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Introduction

All nurses have a duty of care to their patients (Brooker and Waugh, 2013). Nurses are expected to play a safeguarding role, recognising vulnerable patients and protecting them from harm, abuse and neglect. Elderly patients are at especial risk due to their poor health, disabilities and increased frailty (de Chesnay and Anderson, 2008). Of concern here, is the higher than average incidence of abuse in elderly people with dementia (Cooper et al., 2008). Nurses play an important role in recognising signs of abuse and acting as advocates for their dementia patients. Here, the principles of safeguarding and how they are applied in dementia nursing are presented.

Dementia: Cause of Vulnerability

Dementia is a group of symptoms that are associated with declining functionality and physical health of the brain (NHS Choices, 2015). This decline in mental function makes a person increasingly vulnerable (de Chesnay and Anderson, 2008). Dementia is typically seen in elderly people with one in every three people over 65 having dementia, and two-thirds of these will be women (Alzheimer’s Society, 2014). The signs and symptoms of dementia demonstrate how this condition makes someone vulnerable to harm, abuse or neglect (Hudson, 2003) as they include: memory loss, reduced thinking speed, reduced mental agility, language difficulties, lower levels of understanding and reduced judgement. Furthermore, as dementia develops people become more apathetic and isolated as they lose interest in socialising, putting them at increased risk.

Dementia can alter a person’s personality (Hudson, 2003). They may find it difficult to control their emotions and hard to empathise. They may appear more self-centred, suffer from hallucinations and even make false claims or statements. All of these factors make it difficult for relatives and carers to interact with the dementia patient especially when offering very personal care (Adams and Manthorpe, 2003). Dementia reduces a person’s ability to live independently and, as the condition progresses, they will increasingly need support and assistance. Their lack of mental capacity makes dementia patients vulnerable to the actions of others (Hudson, 2003). They will require assistance with decisions and gradually lose their autonomy as the dementia progresses, eventually relying on others for even the most simplistic decisions. Depending upon the stage and severity of their dementia, they may be living at home with support from relatives, or they may be in residential care.

Safeguarding: Duties and Expectations

Safeguarding adult patients means to protect those at risk of harm from suffering any abuse or neglect (Tidy, 2013). The CQC (2015) defines safeguarding people as “protecting people’s health, wellbeing and human rights, and enabling them to live free from harm, abuse and neglect”. Safeguarding is seen as an essential component of high quality health and social care. The healthcare provider is expected to minimise the risk of any abuse or neglect befalling a patient, identifying any potential causes and taking steps to mitigate them. A patient’s right to live safely and free from abuse or neglect must be protected, and their wellbeing promoted with ample consideration for their own views and beliefs.

The overall responsibility for safeguarding vulnerable adults lies with Adult Social Care (Dementia Partnerships, 2015). They receive and process and safeguarding issues from their partner agencies. However, each partner agency is expected to have its own procedures and practices to recognise and respond to any safeguarding alerts. This means that all staff employed by a health or social care provider has a duty to identify and report any safeguarding issues. Nurses caring for patients with dementia therefore have a duty to identify and report any signs of abuse or neglect (Hudson, 2003). Furthermore, they must have the knowledge and skills necessary to provide quality care to these patients with reduced mental capacity.

Abuse of a vulnerable adult can occur anywhere: at their home, in a hospital or a residential care setting (Tidy, 2013). Abuse can include physical actions, sexual abuse, mental or emotional abuse, neglect and also financial abuse. Often, the abuser is well known to the victim (de Chesnay and Anderson, 2008). They could be a neighbour, relative or friend, carer, nurse or social worker, a fellow resident or service user. The adults most at risk of abuse are the frail elderly people who either live alone, or live in residential care, but without any family support (Mandelstam, 2008). In terms of suffering physical harm, the most at risk are those adults with mental or physical disabilities.

Dementia Specific Issues

Dementia patients are vulnerable adults, their degree of vulnerability dependant on the stage and severity of their condition (Tidy, 2013). The Department of Health describes vulnerable adults as those who are unable to take care of themselves, or who are unable to protect themselves from harm (DH, 2000). People with care and support needs require help and assistance from both the nursing and social care disciplines. Part of the nurse’s duty is to safeguard their vulnerable patient from abuse and neglect (SCIE, 2015). The Care Act (HM Government, 2014) requires local authorities to perform safeguarding duties. This stipulates a multiagency approach where any safeguarding concerns are recognised, acknowledged and addressed. Dementia patients are especially vulnerable as they increasingly lack the mental capacity to participate in the decision-making process that will ultimately protect and promote their own interests (BMA, 2011). This means that any decisions made regarding their care or treatment are made on their behalf. This loss of autonomy disempowers them and makes them subject to others’ will. Coupled with the ageing process, declining physical health and increased frailty, this puts dementia patients in a highly vulnerable position.

Steps a Nurse Can Take: Identification

Safeguarding adults with dementia is a difficult task. It is widely acknowledged that it is difficult for the nurse to spot signs of abuse in dementia patients due to similarities between signs of abuse and symptoms of their underlying condition. General signs of abuse can include frequent arguments between the caregiver and the patient, and changes in the dementia patient’s personality or behaviour (Tidy, 2013). Yet, as noted above, these are also signs and symptoms of the progressive disease. Furthermore, spotting such trends requires the nurse to have good knowledge of both patient and carer. Recognised signs of emotional abuse such as rocking, sucking and/or mumbling to themselves are also dementia-like (Tidy, 2013). Often professionals can only detect the signs of physical abuse and neglect by way of a detailed physical examination. The nurse should look for signs of physical and sexual abuse such as physical injury, bruising and bleeding. These may seem more easily detectable, but can be concealed or explained away as accidents. Signs of neglect, including weight loss, dirty living conditions, poor personal hygiene and untreated physical problems, should be identified by the nurse. Again, factors associated with dementia such as increasing apathy, reduced taste / appetite may be the underlying cause and will need to be explored.

Effective safeguarding requires the nurse needs to get to know their patient, discussing all aspects of their well being with them and/or their carer. People with dementia are especially vulnerable to abuse being less able to remember or describe what has occurred (Alzheimer’s Society, 2014). Victims, whether they have dementia or not, find it difficult to tell anyone what has happened. Added to this general reluctance, are issues specific to dementia: patients may feel that they will not be believed, have difficulties recalling and communicating events. The distress caused by the abuse may exacerbate these difficulties. Dementia patient are often not believed, being discredited and thought of as confused and unreliable. Therefore, to protect their patients and best represent their interests it is essential that the nurse understands them and establishes a good trusting relationship.

Dementia patients are also at increased risk of financial abuse. This can include sales-people taking advantage of them, relatives or carers accessing their bank details or causing them to alter their will and/or gain power of attorney (Adams and Manthorpe, 2003). Yet, the nurse should remember that some of these actions may be necessary steps so as to provide care to elderly dementia sufferers. For example, a carer may need to pay for some goods or services for the patient, and, in cases of significant reductions in mental capacity, power of attorney has to be awarded to ensure that all aspects of the dementia patient’s life are managed. Nurses should be aware of the Mental Capacity Act (HM Government, 2005). This was introduced to help protect the rights and wellbeing of those who lack capacity. It governs the responsibilities and jurisdiction of those making decisions on another’s behalf. It aims to ensure that people’s autonomy is protected, but where they cannot make a decision, they are not ignored and any actions are in their best interest (Adams and Manthorpe, 2003).

The demanding care needs of dementia patients can result in high levels of ‘carer stress’ to be experienced by relatives and friends. This may cause that individual to do abusive things and behave out-of-character. Nurses should recognise that carers of dementia patients experience greater strain and distress compared to carers of other elderly people (Alzheimer’s Society, 2014). The enforced change of lifestyle resulting from caring full time can manifest as resentment and dislike. External pressures and stress can make people abuse others, as can a history of being abused themselves, previous violent or antisocial behaviour. Nurses should endeavour to develop a good relationship with both patient and carer(s). They should seek to establish trust and empathy and learn about the people behind the condition. This will enable the nurse to offer high quality care as described in the next section.

Steps a Nurse Can Take: Prevention

Nurses should recognise that abuse can take place in all settings and be performed by all people (Tidy, 2013). Abuse of dementia patients in formal residential or hospital care settings is usually a sign of an overall poor quality of care. It signifies that staff are not appropriately trained and skilled in dementia care. They do not understand the complex needs of these patients and therefore cannot adequately address them. Thus, where a nurse identifies abuse at an organisational level, the situation should be reported so the necessary systems and training can be put in place. Remedial action on this scale is outside the scope of this essay, but where a colleague or individual carer acts inappropriately, the nurse can intervene to educate and train them.

The communication difficulties posed by dementia patients does mean that it is more difficult to offer person-centred care. This results in an individual’s needs not being met. This is further exacerbated where the dementia patient exhibits behavioural and psychological symptoms such as restlessness, shouting and aggression. These can result in the patient being restrained or medicated inappropriately. Therefore, nurses should ensure that they have the knowledge and skill to work with dementia patients so as to act in their best interests. On occasion, the requirements of the Mental Capacity Act are not followed appropriately: Staff assume that all dementia patients lack capacity and therefore don’t involve them in decisions. Nurses should be aware of, and understand, the Act. They should know how to implement it and where to gain advice if necessary. Ideally, there should be continuity of care. The same nurse should work with the patient and their carer(s) throughout the progression of the condition. By knowing the patient well, they will be better able to facilitate person-centred care, upholding the patient’s interests and best representing their views.

The nurse also has safeguarding duties with regards to home-based care. Improving the emotional and practical support given to family carers of dementia patients is recognised as key to safeguarding patients. These carers have little or no training and often do not feel adequately prepared (Alzheimer’s Society, 2014). They often find the situation stressful and demanding: circumstances that could lead to abuse or neglect. The nurse should therefore ensure that they are approachable and inspire confidence in the patient and carer. They should provide education and advice to carers and ensure that back-up support and resources are available to those who need it at all times. Developing a good relationship between all parties is essential in preventing abuse from occurring, ensuring the patient’s needs are met and their interests respected.

Conclusion

Nurses play a key role in protecting dementia patients from abuse. In order to effectively safeguard their patients, it is essential for nurses to understand the types of abuse, how and why it may occur. Dementia patients are at especial risk due to their declining mental capacity and reliance on others. Nurses are well placed to identify and prevent abuse through establishing close, open and trusting relationships with both patient and carer. Nurses can act as advocates for their patients, representing their best interests and facilitating person-centred care. Through providing education and support for carers, nurses can ensure that all the dementia patient’s needs are met.

References

Adams, T., Manthorpe, J., (2003). Dementia Care: An evidence based textbook. Boston, CRC Press

Alzheimer’s Society, (2014). Dementia 2014 Infographic [on-line]. London, Alzheimer’s Society via: http://www.alzheimers.org.uk/infographic

BMA, (2011). Safeguarding Vulnerable Adults – A toolkit for general practitioners. London, British Medical Association

Brooker, C., Waugh, A., (2013). Fundamentals of Nursing Practice: Fundamentals of Holistic Care. New York, Elsevier

Cooper, C., Selwood, A., Livingstone, G., (2008). The prevalence of elder abuse and neglect: A systematic review. Age and Ageing, 37(2): 151-160

CQC, (2015). Safeguarding People [on-line]. London, Care Quality Commission http://www.cqc.org.uk/content/safeguarding-people

de Chesnay, M., Anderson, B.A., (2008). Caring for the Vulnerable: Perspectives in Nursing Theory, Practice and Research. London, Jones and Bartlett Learning

Dementia Partnerships, (2015). Safeguarding vulnerable adults [on-line]. Ashburton, Dementia Partnerships http://www.dementiapartnershipd.org.uk/archive/primary-care/primarycaretoolkit/1-dementia-care/managing-a-long-term-condition/safeguarding/

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HM Government, (2014). The Care Act. London, The stationary office

HM Government, (2005). The Mental Capacity Act. London, The stationary office

Hudson, R., (2003). Dementia Nursing: A guide to practice. Oxford, Radcliffe Publishing

Mandelstam, M., (2008). Safeguarding Vulnerable Adults and the Law. London, Jessica Kingsley Publishers

NHS Choices, (2015). Dementia [on-line]. London, Department of Health http://www.nhs.uk/Conditions/dementia-guide/Pages/about-dementia.aspx

SCIE, (2015). Adult Safeguarding [on-line]. London, Social Care Institute for Excellence http://www.scie.org.uk/adults/safeguarding

Tidy, C., (2013). Safeguarding Adults. Leeds, Emergency Medical Information Service

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Terms of Reference

Accountability: Means that healthcare professionals are accountable to their selves and to others on the care received by the patients.

Adverse event: Refers to an incident that occurred in the hospital or any other clinical setting that resulted to harm or could have resulted to the patient’s harm.

Colleagues: Other healthcare professionals, co-workers, midwifery and nursing students.

Patient-centred care: A consideration of patient preferences, engagement and needs when making healthcare decisions.

Patient satisfaction: The perceived level of satisfaction on the quality of care they receive from their nurses.

Introduction

This report aims to discuss the role and career opportunities for a nurse. This report will include the qualification, skills and experience that are required to be a nurse in Ireland. A discussion on the daily work of a nurse with reference to health and safety issues will also be presented. Possible job opportunities for nurses in the Irish healthcare system will also be discussed. A conclusion will summarise the key points raised in this report.

Qualification, Skills and Experience Required to be a Nurse

The Code of Professional Conduct and Ethics for Registered Nurses and Registered Midwives (Nursing and Midwifery Board of Ireland, 2014) lays out the skills and professional requirements necessary for registered nurses in Ireland. These skills include the ability to provide safe and quality care for different groups of patients, respecting the dignity of each patient, professional accountability and responsibility, quality care, collaboration and trust and confidentiality. Since nurses continue to professionally develop from newly registered to specialist nurses, it is expected that professional characteristics and skills would be honed as nurses begin their practice. One of the important skills required for quality patient-centred care is the ability to communicate effectively with patients and colleagues. Communication is defined as a two-directional process that could involve transmission and receiving of verbal and non-verbal messages (Kourkouta and Papathanasiou, 2014). Nurses have a crucial role in promoting the health and welfare of patients. Establishing a relationship of trust in the beginning of care is crucial in promoting effective communication (Houghton and Allen, 2005). The first meeting between a nurse and a patient is important since this could either reassure patients or convey fear and indifference (O’Daniel and Rosenstein, 2008). However, communicating with patients who suffer from cognitive impairment or are unable to communicate because of confusion and hypoxia is often difficult and challenging (O’Daniel and Rosenstein, 2008). In patients unable to verbally express themselves, nurses have to recognise non-verbal messages in order to determine the healthcare needs of the patients (Watson, 2008). For instance, facial expressions, body gestures and posture (Houghton and Allen, 2005) could help identity the patient’s feelings and needs. Effective communication is important in patient care since this will help facilitate timely and early intervention for the needs of the patients (Watson, 2008). Kourkouta and Papthanasiou (2014) argue that physical space, social and cultural values and psychological conditions have an impact on the communication between the nurse and patient and vice versa. Hence, it is crucial for nurses to identify the factors that promote effective communication and those that deter patients from communicating their needs with the nurses. For instance, a language barrier might lead to miscommunication or misinformation, which in turn, affects the quality of communication of the nurses and patients.

Apart from communication skills, healthcare professionals are also bound to provide safe and effective care as stressed in the Code of Conduct for nurses in Ireland (Nursing and Midwifery Board of Ireland, 2014). Avoidance of medication errors does not only promote safe and effective care but also prevents adverse events and death of the patients. Acquiring numeracy skills is a prerequisite in the preparation and safe administration of medications. However, Eastwood et al. (2011) suggest that a number of nursing students have poor numeracy skills. While applicability of the findings of these studies to a larger and more heterogeneous population is limited due to the small sample sizes, findings could show a trend on the numeracy skills of nursing students. These suggest the need to enhance nursing curriculum to ensure that students have sufficient numeracy skills to prepare and administer medications before they become registered nurses. It is noteworthy that these findings are not only seen in nursing students but also in registered nurses (Warburton, 2010). This indicates that there is a continuing need to train nurses on how to safely administer or prepare medications in order to prevent medication errors.

Another nursing quality that is associated with quality care is the ability to show empathy to patients. Empathy is described as the ability to share and understand the feelings of other people (Kinnell and Hughes, 2010). Developing this characteristic could calm down patients and let them feel that nurses are willing to listen to their concerns and are available to help them with their needs. Rana and Upton (2009) suggest that patients are satisfied with the care they receive if they perceive nurses to be empathic to their needs, feelings and concerns. Increasing levels of patient satisfaction is important since high levels are associated with better quality care (Rana and Upton, 2009).

The Code of Professional Conduct and Ethics (Nursing and Midwifery Board of Ireland, 2014) should also develop skills on how to collaborate effectively with others. This means that individuals also have to learn effective leadership skills in order to lead health care teams, introduce innovations and work in partnership with other agencies in order to improve care. It has been shown that the transformational leadership style is consistent with effective leadership (Bach and Ellis, 2011). This type of leadership requires leaders to develop empathy with their colleagues and patients. These leaders also tend to have high emotional intelligence (Bach and Ellis, 2011). Hence, developing the skills needed to become a transformational leader would be essential as a nurse. Further, collaborating with others requires skills on how to resolve conflicts.

Health and Safety Issues

Nurses working on clinical and primary care settings have some health and safety issues to consider. For example, nurses assigned to patients who are immobile often have to handle these patients manually. Failure to properly handle patients could lead to health issues such as musculoskeletal injuries (Cornish and Jones, 2007; Powell-Cope et al., 2014). The rising incidence of musculoskeletal injuries (Powell-Cope et al., 2014) is a cause of concern since guidelines are available for nurses and students on how to properly handle patients manually. Yet, it has been shown that adherence to these guidelines is not optimal for both students and registered nurses (Powell-Cope et al., 2014). This suggests that translating evidence and uptake of guidelines in actual practice still remains to be low despite aggressive implementation of these guidelines in clinical practice. Health and safety issues are often influenced by the culture present in the clinical setting (Powell-Cope et al., 2014). For instance, student nurses who observe registered nurses not following policies or guidelines might assimilate this bad practice once they become registered nurses (Cornish and Jones, 2007).

Apart from developing musculoskeletal injuries, nurses who work long hours are also at risk of nursing burnout. It has been shown that nursing burnout is associated with lower job satisfaction (Mrayyan, 2006). This in turn affects the psychological health of the nurses, their interaction with patients and reduces the quality of care they provide to their patients (Mrayyan, 2006). Hence, it is essential to consider the number of nursing staff and whether this could support the current needs of patients in healthcare settings. Further, nursing burnout also indirectly affects nursing-patient ratio since nurses who report burnout are more likely to leave their jobs (Mrayyan, 2006; Wong et al., 2013). This could lead to a high turnover of nursing, which in turn, affects the quality of care received by the patients.

Another important health and safety issue in healthcare setting includes percutaneous and needle-stick and sharp injuries. This health issue is related to poor compliance to universal precaution (Jacob et al., 2010). This is challenging since studies (Gershon et al., 2009; Jacob et al., 2010) have shown that nurses tend to report high knowledge and awareness on universal precaution. The risk associated with failure to observe universal precaution when handling sharp objects in clinical settings include increased risk of acquiring HIV infection, Hepatitis B and C (Mark et al., 2007; Elder and Paterson, 2007). Reporting of injuries is also crucial in maintaining the safety of nurses in clinical settings. However, current data on this type of injuries might not truly reflect actual practice since underreporting is often noted in published studies (Gershon et al., 2009). For instance, Gershon et al. (2009) report that 45% of percutaneous injuries were not reported. The incidence of percutaneous injuries highlights the need for consistent training of the nurses.

Job Opportunities

Nurses in Ireland have many job opportunities as demand of healthcare increases. Incidence of long-term conditions such as obesity, diabetes and heart diseases have increased in the last few decades (DHSSPS, 2012). This requires specialist care from nurses. Further, the ageing population also means that individuals are living longer and hence, might require additional care to ensure longevity or address chronic conditions that affect older persons (DHSSPS, 2012). Newly registered nurses could acquire experience and develop to become specialists in their respective fields. For example, there is a need for specialist nurses such as diabetes nurses to manage patients suffering from type 1 and type 2 diabetes. On the other hand, mental health nurses are required in community and clinical settings to manage patients suffering from schizophrenia, depression, postpartum psychosis, depression and other mental health conditions. Learning disability nurses provide support and care management to patients and their families suffering from learning disabilities. Meanwhile, paediatric nurses provide care to paediatric patients.

Nurses could also choose to specialise to become part of surgical theatre teams. Others could also opt to become mentors, cardiology nurses or respiratory specialists. Nurses who are now specialists could also choose to further hone their skills and qualify as a nurse prescriber. These nurses could prescribe medications from their own field of specialty only (Nursing and Midwifery Board of Ireland, 2015). It has been shown that inclusion of nurse prescribers allow continuity of care and higher patient satisfaction (Nursing and Midwifery Board of Ireland, 2015). Patients report that they are also satisfied with the type of care they receive from nurse prescribers and view them as showing more empathy and sensitivity to their situations. However, it should be noted that nurses who choose to become specialists or nurse prescribers have to engage in continuing professional development, earn a Master’s degree in nursing or continue to train in their respective fields. Hence, learning is seen as continuous when an individual engages in the nursing profession. Since this is a caring profession, nurses are also expected to show empathy and compassion to their patients. These characteristics are often honed as nurses become highly specialised in their chosen fields.

Conclusion

Nursing is a caring profession that aims to provide quality, patient-centred care to the patients. Preparing to become a registered nurse in Ireland requires earning a nursing degree. The path to becoming an effective nurse begins in the nursing student years. Developing attitudes such as empathy, compassion, responsibility and accountability and practical skills such as numeracy skills could all promote quality care. As patients perceive their nurses to reflect these attitudes and skill, they would be reassured that their nurses truly care and are willing to manage their health condition. This essay also argues the importance of developing communication skills in order to identify the needs of the patient and introduce early interventions. However, becoming a nurse is also challenging because of health and safety issues. These include the risk of musculoskeletal, percutaneous and needle-stick injuries. Some nurses, due to a low nurse-patient ratio, may also suffer from nursing burnout. Once this occurs, this might lead to poor job satisfaction and high nursing turnover. Quality of patient care is affected when there are fewer and dissatisfied nurses. Finally, this essay shows that there are many job opportunities for nurses in Ireland.

References

Bach, S. & Ellis, P. (2011) Leadership, Management and Team Working in Nursing. Exeter: Learning Matters.

Cornish, J. & Jones, A. (2007) ‘Evaluation of moving and handling training for pre-registration nurses and its application to practice’, Nurse Education in Practice, 7(3), pp. 128-134.

Department of Health, Social Services and Public Safety (2012) Living with long term conditions: A policy framework. Dublin, Ireland: Department of Health, Social Services and Public Safety.

Eastwood, KJ, Boyle, MJ, Williams, B, & Fairhall, R (2011) ‘Numeracy skills of nursing students. Nurse Education Today. 31(8) November. pp. 815-818.

Elder, A. & Paterson, C. (2006) ‘Sharps injuries in UK health care: a review of injury rates, viral transmission and potential efficacy of safety devices’, Occupational Medicine, 56 (8), pp. 566-574.

Gershon, R., Pearson, J., Sherman, M., Samar, S., Canton, A. & Stone, P. (2009) ‘The prevalence and risk factors for percutaneous injuries in registered nurses in the home health care sector’, American Journal of Infection Control, 37(7), pp. 525-533.

Houghton, A. & Allen, J. (2005) ‘Doctor-patient communication’, British Medical Journal Career Focus, 330, pp. 36-37.

Jacob, A., Newson-Smith, M., Murphy, E., Steiner, M. & Dick, F. (2010) ‘Sharps injuries among health care workers in the United Arab Emirates’, Occupational Medicine, 6(5), pp. 395-397.

Kinnell, D. & Hughes, P. (2010) Mentoring Nursing and Healthcare Students. London: SAGE.

Kourkouta, L. & Papathanasiou, I. (2014) ‘Communication in nursing practice’, Materia Socio Medica, 26(1), pp. 65-67.

Mark, B., Hughes, L., Belyea, M., Chang, Y., Hofmann, D., Jones, C. & Bacon, C. (2007) ‘Does safety climate moderate the influence of staffing adequacy and work conditions on nurse injuries?’, Journal of Safety Research, 38(4), pp. 431-446.

Mrayyan, M. (2006) ‘Jordanian nurses’ job satisfaction, patients’ satisfaction and quality of nursing care’, International Nurse Review, 53(3), pp. 224-230.

Nursing and Midwifery Board of Ireland (2014) The Code of Professional Conduct and Ethics for Registered Nurses and Registered Midwives. Ireland: Nursing and Midwifery Board of Ireland [Online]. Available from: http://www.nursingboard.ie/en/code/new-code.aspx (Accessed: 15 June, 2015).

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Introduction

This essay will discuss how play therapy improves the cognitive and social functions of young children. A brief review of child development theories and how these underpin play therapy will be done. A critical analysis of published literature on play therapy and its impact on child development will then be presented. Finally, a conclusion summarising the key points raised in this essay will be presented.

Child Development Theories and Play Therapy

Piaget’s theory proposes that cognitive development of children occurs in four stages: sensorimotor, preoperational, concrete operational and formal operational stages (Nevid, 2008). Piaget observes that very young children engage in general patterns of behaviour once they are at play. These include being fascinated with objects, covering objects, filling or emptying containers, transporting objects and connecting them together. Crowley (2014) explains that these behaviours are known as schemas. As children assimilate new experiences and accommodate learning, these schemas will help them to make sense of the world around them (Crowley, 2014). Hence, allowing children to play and explore will help them develop a schema of their environment (Keenan and Evans, 2009). Piaget’s theory helps to underpin play therapy since it acknowledges that play will help children to construct knowledge and develop cognitive abilities. For instance, in the sensorimotor stage, providing children with a treasure basket will expose very young children to a wealth of sensory stimuli (Shaffer and Kipp, 2009). In turn, this will promote cognitive development as children become acquainted with different sounds, shape, colour, taste and texture of toys. Children, according to Piaget, develop through assimilation or through using an existing schema to make sense of a new situation or object (Shaffer and Kipp, 209). This is then followed by accommodation when existing schema has to be changed in order to deal with a new situation. As children continue to develop, new information is quickly assimilated based on existing schema. Piaget explained that equilibrium is reached when children learn to deal with new information through assimilation. Meanwhile, Vygotsky’s theory proposes that social interaction is crucial in the cognitive development of children (Shaffer and Kipp, 2009). He suggests that social, linguistic and interpersonal factors all play a role in the mental development of children. In this theory, social interaction during play is critical in developing cognitive learning. It has been shown that during play, social skills are developed along with skills on problem solving (Keenan and Evans, 2009).

Critical Review of Play Therapy

Play has long been recognised as crucial in the healthy development of children (Ray, 2011). However, it was only in the 1900s when therapeutic settings began using play as a means for young children to express their emotions and feelings. Early proponents of play therapy include Melanie Klein and Anna Freud (Ray, 2011). They used play to help analyse childrens’ behaviour, feelings and responses to events or situations. Both early scholars used play to help children communicate non-verbally. Today, child-centred play therapy is widely accepted as a means of helping children resolve or prevent psychological and social difficulties and in helping them to achieve optimal development (Keenan and Evans, 2009). A meta-analysis (Bratton et al., 2005) on the efficacy of play therapy reviewed and pooled data from 94 studies that investigated play therapy outcomes. Forty-two of these studies were published in peer-reviewed journals while 50 were unpublished dissertations. Two of the articles were from the Education Resources Information Center (ERIC) database. Studies included in the meta-analysis utilised the comparison or control-group design or pre and post-treatment measures. Treatment effect was calculated after pooling data from these studies.

Findings of the study reveal that the effect of play therapy on different treatment outcomes ranges from 0.66 to 0.84. According to Cohen’s guideline for interpretation of treatment effect, a value of 0.80 suggests a large treatment effect (Ellis, 2010). This suggests that play therapy is effective in managing behavioural and emotional difficulties in children. Although duration of treatment varies, findings suggest that 35-40 sessions of play therapy significantly improved treatment outcomes. Findings also appear to suggest that positive outcomes declined with prolonged sessions. For instance, findings suggest that positive outcomes declined after multiple sessions (40 sessions). This suggests that findings should be taken with caution in determining whether long-term play therapy is effective. In contrast, children ending play therapy prematurely or engaging in less than 14 sessions of therapy did not show positive treatment outcomes compared to children who completed 35-40 play therapy sessions. Meanwhile, investigators of the study failed to mention the average number of hours for each session. This could have provided important information on how long each session should last. Findings also show that gender and age were not significant predictors of the treatment outcomes, suggesting that this type of therapy is equally effective for boys and girls and across all ages of the children. Although the study shows equal effectiveness of play therapy for different age groups, this intervention might be more successful in younger children. Since play therapy is considered as sensitive to the development stage of the children (Nevid, 2008), it is reasonable to apply this form of therapy to younger children while older children might benefit more from traditional talk therapies (Bratton et al., 2005). The study also suggests that when parents are trained to partner with healthcare professionals in conducting play therapy, the treatment effect of play therapy significantly increased when compared to therapy conducted by professionals alone. Hence, when supervised by healthcare professionals and therapists, the involvement of parents would result in the greatest benefit.

A meta-analysis allows pooling of data from studies with small sample sizes and hence, insufficiently powered (Polit et al., 2013). It should be noted that small studies are often rejected for publication due to sample size or once published, have limited applicability due to insufficient treatment effect (Polit et al., 2013). Hence, a meta-analysis would be able to address this issue since findings are pooled (Ellis, 2010). A review of the study of Bratton et al. (2005) reveals that all resources for both published and unpublished studies were exhausted to avoid publication bias (Burns and Grove, 2013). Further, investigators only included studies that reported statistics and have sound methodological procedures. Further, the study was able to establish that play therapy could be an agent in changing children’s behaviour, help them adjust socially and adapt to a group in order to fit in. Likewise, play therapy also appears to be uniquely responsive to the children’s developmental needs. However, play therapy was compared only to no intervention, making it difficult to establish if play therapy is the most effective intervention for children’s behavioural, social and cognitive difficulties. Comparing play therapy with other form of interventions might help to provide more information on its effectiveness in improving the behaviour of children.

Apart from promoting positive treatment outcomes, play therapy also facilitates social competence and problem solving skills in preschool children (Stone and Stark, 2013; Chinekesh et al., 2014). Stone and Stark (2013) reveal that short-term therapy groups were shown to facilitate development amongst 3-5 year old preschool children. Findings are noteworthy since it has been suggested that very young children are not yet developmentally prepared to engage in a group process (Stone and Stark, 2013). However, findings of the study suggest that very young children are able to participate in structured play therapy. Further, they benefit from these structured plays as evidenced in improvements in their social skills. Meanwhile, Chinekesh et al. (2014) investigated the effects of play therapy on children’s emotional and rational skills. A total of 372 pre-school children were recruited in the study and randomly assigned to the group play therapy and control group. Pre and post-tests were done to compare the children’s self-regulation, self-awareness, empathy, social interaction and adaptability before and after the intervention. Findings between case and control groups were also compared. Results of the study suggest that play significantly improved the children’s social and emotional skills (p0.001). Further, Chinekesh et al. (2014) observe that play therapy could help improve the children’s ability to learn problem-solving skills and communicate with other children. Providing an environment where children are engaged in unstructured play would help them develop their social skills as they learn to interact with other children (Chinekesh et al., 2014).

Play therapy has also been shown to improve outcomes among children with disabilities. For instance, the studies of Abdollahian et al. (2013); Kasari et al. (2012); Wilkes-Gillan et al. (2014); Cantrill et al. (2015) have similar findings and suggest that play therapy is effective in improving social play skills of children with attention deficit hyperactivity disorder (ADHD) and autism spectrum disorder (ASD). For instance, Kasari et al. (2012) suggest that play therapy could help improve the language skills and communication of children with ASD. This was a longitudinal study and followed preschool children who received early play therapy intervention. During the 5-year follow-up, children who received play therapy were more likely to have better language skills. The strength of a longitudinal outcome is its ability to show patterns regarding how play therapy improves the social and cognitive skills of children over time (Ellis, 2010). However, panel attrition might affect the findings of a longitudinal study (Gray, 2009). Panel attrition could occur if several members of a cohort decide to drop out or are unable to participate during the last stages of the study. In addition, play therapy (Abdollahian et al., 2013) has been shown to be effective in reducing symptoms associated with ADHD. Abdollahian et al. (2013) emphasise that play therapy would be effective in managing symptoms associated with ADHD. Meanwhile, Cantrill et al. (2015) point out that children’s social play skills are further enhanced when parents are involved in the delivery of the therapy. A third study (Wilkes-Gillan et al., 2014) suggests that social play outcomes of children with ADHD significantly improved following play therapy. Although this study has a small sample size (n=5 children with ADHD), it was able to demonstrate preliminary efficacy.

In summary, recent literature has shown that play therapy consistently promotes positive outcomes for children with or without disabilities. Specifically, it promotes social and cognitive skills in very young children and could be used as a method to prepare these children for transition from kindergarten to infant school. The effectiveness of play therapy is also not influenced by gender and age, suggesting its effectiveness for both boys and girls and those in the younger or older age group. However, the impact of play therapy appears to be greatest amongst younger age children. This form of therapy could also be used to improve language skills in children suffering from autism (Kasari et al., 2012). Literature also demonstrates that the participation of parents significantly enhances the effectiveness of play therapy. This suggests that parents should be involved to facilitate sustained positive outcomes in children.

Conclusion

Play therapy could help to improve both social and cognitive functions of children with or without disabilities. Hence, there is a need to provide children with a safe environment that would allow them to play and interact with other children. While most studies reviewed in the present essay used play therapy as treatment for behavioural and social difficulties, play therapy could also be used for children without disabilities. Specifically, it can be used for preschoolers to help them develop their social and cognitive skills. As Vygotsky’s theory suggests, social development would help children develop mentally. Hence, promoting play therapy amongst young children with no disabilities would not only help to develop their social skills but also their cognitive skills. Finally, play therapy could also promote social and cognitive skills in children with disabilities such as ADHD and ASD. It is recommended that play therapy should be introduced into preschool settings for better outcomes for children. It is also recommended that parents should be involved in order to enhance the impact of play therapy. Hence, there is a need to train parents on how to deliver this type of therapy on their children.

References:

Abdollahian, E., Mohkber, N., Balaghi, A. & Moharrari, F. (2013) ‘The effectiveness of cognitive-behavioural play therapy on the symptoms of attention-deficit/hyperactivity disorder in children aged 7-9 years’, Attention Deficit and Hyperactivity Disorders, 5(1), pp. 41-46.

Bratton, S., Ray, D. & Rhine, T. (2005) ‘The efficacy of play therapy with children: A meta-analytic review of treatment outcomes’, Professional Psychology: Research and Practice, 36(4), pp. 376-390.

Burns, N. & Grove, S. (2013) The practice of Nursing Research: Conduct, critique and utilisation (7th ed.). St. Louis: Elsevier Saunders.

Cantrill, A., Wilkes-Gillan, S., Bundy, A., Cordier, R. & Wilson, N. (2015) ‘An eight-month follow-up of a pilot parent-delivered play-based intervention to improve the social play skills of children with attention deficit hyperactivity disorder and their playmates’, Australian Occupational Therapy Journal, 62(3), pp. 197-207.

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Wilkes-Gillan, S., Bundy, A., Cordier, R. & Lincoln, M. (2014) ‘Eighteen-month follow-up of a play-based intervention to improve the social play skills of children with attention deficit hyperactivity disorder’, Australian Occupational Therapy, 6(15), pp. 299-307.

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Australia has a large and expanding population of people from a refugee background – referred to as ‘refugees’. Refugees in general, and refugee women in particular, have distinctive and diverse health needs which require complex and conscientious responses from nurses and health systems. In the context of nursing refugee women in Australia, this paper will explore the need for cultural safety in nursing. It will then analyse the negative impacts of culturally unsafe nursing practices and health systems in Australia on refugees and refugee women. Finally, it will discuss how culturally safe nursing practice can (and should) be achieved in Australia to improve the health outcomes of refugee women and others of diverse backgrounds.

The Nursing Council of New Zealand (2002: p. 7), which developed the concept of cultural safety, defines it as “the effective nursing … [care] of a person or family from another culture, [as] determined by that person or family”. Fundamentally, culturally safe nursing practice focuses on supporting diverse people to effectively access and engage with mainstream ‘biomedical’ health systems, and so reducing the high rates of poor physical and psychological mental health outcomes in these populations (Johnstone & Kanitsaki, 2007). Culturally safe nursing practice achieves this by attempting to deconstruct the inequitable power relationships between patients and health providers and systems, which are a significant barrier to health access and engagement for socio-culturally vulnerably groups (Anderson et al., 2003; Woods, 2010). This is achieved through a focus on culture. However, culturally safe practice does not involve nurses learning others’ cultures; indeed, diversity both between and among cultures is too significant to allow a nurse to do this meaningfully (Woods, 2010). Instead, culturally safe nursing involves a nurse reflecting on their own culture and on the legitimacy of others’ cultures in the context of the nursing care they provide (Mortensen, 2010). Belfrage (2007) notes that ‘cultural safety’ underpins the provision of the most effective health practice and systems for diverse groups in Australia. This is particularly true in the context of refugee health.

The United Nations’ 1951 Refugee Convention, Article 1(A)2, defines a refugee as any person residing outside their country of nationality or residence due to fear of persecution (UNHCR, 2015). As a signatory to this Convention Australia has an obligation to assist with the resettlement of refugees, including a special category of refugees referred to ‘women at risk’ (Australian Law Reform Commission, 2015; Parliament of Australia, 2015b). In 2013-14, Australia resettled a total of 6500 refugees, approximately 3.2% of its total migrant intake (Parliament of Australia, 2015b). The majority of these refugees were from Afghanistan (39%), with significant numbers also from Myanmar (18%) and Iraq (13%) (Parliament of Australia, 2015b). In response to the Syrian refugee crisis, in 2015-16 Australia will significantly increase its intake of refugees within existing humanitarian quotas (Parliament of Australia, 2015a). Under the Migration Regulation 1994 Australia allocates 12% of its humanitarian quota to ‘women at risk’, and in 2013-14 granted over 1000 visas to women at risk (Parliament of Australia, 2015b). This program highlights the fact that refugee women are particularly vulnerable to the effects of conflict and persecution (Federal Minister for Women, 2014).

Refugees in general, and refugee women in particular, have “unique and diverse health profiles” (Hadgkiss & Renzaho, 2014: p. 157). Though refugees make up a very small part of the overall Australian population, it is essential that nurses are aware of refugees’ health needs and their complex sociocultural determinants if culturally safe health care is to be provided. In a seminal work on refugee health in Australia (examining the health of refugee children specifically), Davidson et al. (2004) report that a significant number of refugees arrive in Australia with complex health needs. The psychological issues experienced by refugees are well-recognised. Exposure to trauma leaves many refugees – up to 60% in one Australian study – with complex psychological sequelae, including impairments to memory function and debilitating dissociative reactions (Alvin Tay et al., 2013). Nickerson et al. (2014) reports that up to 25% of refugees receive a psychological diagnosis of Post-Traumatic Stress Disorder (PTSD), and 16% of these people also have disorders related to grief. Costa (2007) highlights that refugee women in particular face an increased risk of psychological morbidity related to trauma underpinned by conflict, persecution and forced resettlement. For example, one study found that the gender discrimination experienced by a large number of refugee women is positively correlated with increased incidence of traumatic disorders (including PTSD) and increased risk of suicidality (Kira et al., 2010). It is important to note that issues related to gender, including roles and access, may also limit a refugee woman’s health-seeking behaviours related to mental illness (O’Mahony & Donnelly, 2013).

In addition to mental illness, a large number of refugees – up to 77% in some reports – also experience physical illness; indeed, Hadgkiss and Renzaho (2014) note that poor mental health is strongly correlated with poor physical health in refugee populations. Physical illnesses which are particularly prevalent in refugee populations include dental disease, non-specific migraine, musculoskeletal pain and disorders of the integumentary, respiratory and gastrointestinal systems (Hadgkiss & Renzaho, 2014). There is also a high prevalence of infectious disease in refugee populations, including human immunodeficiency virus (HIV), active tuberculosis, Hepatitis B and C and chronic gastrointestinal infections (Hadgkiss & Renzaho, 2014). Costa (2007) notes that refugee women are disproportionately affected by nutritional deficiencies and anaemia, and a sequelae of physical and psychological issues related to gender-based violence. Refugee women experience higher rates of complex gynaecological and obstetric conditions, are more likely to have been sexually assaulted and are more likely to have had an unwanted pregnancy and / or abortion than other women in host countries (Goosen et al., 2009; Kurth et al., 2010).

The myriad of complex health issues faced by refugees highlights the importance of host countries’ health systems being responsive to refugees’ health needs through the provision of culturally safe care and services. However, there is evidence to suggest this is not being achieved in the Australian context; indeed, Johnstone and Kanitsaki (2007) conclude that cultural safety is both poorly understood and lacks currency in Australia’s mainstream health contexts (Johnstone & Kanitsaki, 2007). This leads to culturally unsafe nursing practices. The Nursing Council of New Zealand (2002: p. 7) define this as “compris[ing] any action which diminishes, demeans or disempowers the cultural identity and wellbeing of an individual”, either overtly and intentionally or otherwise.

There are many examples of culturally unsafe practice relating to refugees in the Australian context. For example, many refugees, both in Australia and elsewhere, perceive themselves to be discriminated against by health staff in their host countries – a key aspect of culturally unsafe practice. Multiple studies report on such issues – including refugees’ perceptions of denial or provision of poorer-quality care on the basis of race and / or immigration status (Bhatia & Wallace, 2007; O’Donnell et al., 2007; O’Donnell et al., 2008; Wahoush, 2009; Bernardes et al., 2010; Kokanovich & Stone, 2010; Asgary & Segar, 2011). This is particularly problematic in terms of the provision of mental health services for refugees in Australia; indeed, Newman et al. (2008) highlight that Australian health workers frequently devalue and deligitimise refugees’ experiences of mental illness – for example, by dismissing the self-harm behaviours of refugees in immigration detention as being politically-motivated. Hadgkiss and Renzaho (2014) report a high level of ‘medical mistrust’ among refugee populations, underpinned by issues such as a fear of financial exploitation and that health information will be used to inform decisions about asylum status (Kokanovic & Stone, 2010; Asgary & Segar, 2011). Covert institutional racism is recognised to be a significant problem in Australian health settings, and this is underpinned by the prejudicial and discriminative attitudes towards refugees which are pervasive in wider Australian society (Henry et al., 2004; Davidson et al., 2008; Johnstone & Kanitsaki, 2008). This ‘systemic trauma’ compounds the health issues of refugees settled in Australia, and is a particular problem for women. Indeed, one Australian study found that women with vulnerabilities related to social adversity were substantially more likely to experience inequalities in health access (in this study, in the context of perinatal care specifically) (Yelland et al., 2012).

In addition to culturally unsafe nursing practices, the provision of culturally unsafe health services is a particular problem for refugees in Australia. As noted by Renzaho et al. (2013) the health systems in host countries are often poorly-equipped to manage the complex health, linguistic and cultural needs of refugee populations (Renzaho et al., 2013). It is well-recognised that Australia’s mainstream biomedical health system is highly Eurocentric, disempowering because of its exclusivity and repressive of the fundamental social dimensions of health (Willis & Elmer, 2007). Additionally, the biomedical model of health may be incompatible with refugees’ diverse perceptions of health, focusing instead on a limited ‘pathological’ definition of disease and a reductionist distinction between physical and mental health (Willis & Elmer 2007). Again, this is particularly problematic in terms of the provision of refugee mental health services; for example, Savy & Sawyer (2008) present evidence for the considerably limited culturally safe treatment options in Australia for refugees suffering acute mental illness. These issues may result in refugees’ exclusion from or disengagement with health services (Correa-Velez et al., 2013). Indeed, there is evidence to suggest that refugees’ engagement with health services is poor; in a European study, Bischoff et al. (2009) found that refugees attend far fewer than the average number of consultations, and that their cost to the health system of their host country was just half that of others in host countries. There is minimal current data available on the engagement of refugee women specifically with health services; however, one study suggests that refugee women are 40% less likely than other women in host countries to attend health screening (in this case for Papanicolaou testing, a common screen for cervical cancer) (Rogstad & Dale, 2004). Refugees’ exclusion from and disengagement with health services feeds into the cycle of poor physical and mental health outcomes in this population.

Woods (2010) notes that nurses have a critical role to play in deconstructing the power imbalances which exist between patients and health providers, and which often result in the provision of culturally unsafe care – thereby promoting refugees’ access to and engagement with health services in a culturally safe way. The Nursing Council of New Zealand (2002: p. 7) highlights that culturally safe nursing practice is underpinned by nurses “hav[ing] undertaken a process of reflection on [their] cultural identity and … recognis[ing] the impact that [their] personal culture has on [their] professional practice”. Here, the notion of ‘culture’ extends beyond the traditional definition of the term as a system of worldviews, value systems and lifestyles based on shared race or ethnicity, and instead ‘culture’ is considered as a complex, changing concept underpinned by factors such as individual experiences, gender and social position, etc. (Woods, 2010). It is important to note that achieving culturally safe nursing is an ongoing process of continuous reflection (Ogunsiji et al. 2007). Given the covert but pervasive negative views of refugees in Australian health systems and wider society (Henry et al., 2004; Davidson et al., 2008; Johnstone & Kanitsaki, 2008), reflecting on one’s own culture in this way is a particularly important aspect of providing culturally safe health care to refugees.

In addition to reflecting on their own culture, a nurse must also reflect on the cultures of others – but should do so in the context of cultural relativism. Cultural relativism is a sociological theory which posits that all cultures are, and therefore must be recognised as, equally valid and legitimate forms of human expression (Kottak, 2004). Cultural relativism is particularly important when caring for refugees, including refugee women, who engage in unfamiliar and challenging health practices, one example of which is ritualised genital cutting (also referred to as ‘female genital mutilation’). Many refugee women from parts of Africa and the Middle East perceive genital cutting to be an important cultural practice and fundamental to their identity, role and beliefs, however the mainstream biomedical health system in Australia denounces and reproves the practice (Ogunsiji et al. 2007). If such issues are not dealt with sensitively and approaches – from both nurses and the health system – balanced through the application of principles of cultural relativism, refugee women may disengage from health services (Ogunsiji et al. 2007). As noted, disengagement drives the cycle of poor physical and mental health outcomes for refugees in Australia.

Australia has a large refugee population which is predicted to increase significantly in the coming years. Refugees in general, and refugee women in particular, have distinctive and diverse health needs which require complex and conscientious responses from nurses and health systems. In the context of nursing refugee women in Australia, this paper has explored the need for cultural safety in nursing. It has also analysed the negative impacts of culturally unsafe nursing practices and health systems in Australia on refugees, with a focus on refugee women. Finally, it was discussed how culturally safe nursing practice can (and should) be achieved in Australia to improve the health outcomes of refugee women and others of diverse backgrounds.

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The National Health Service is the universal medical care provider for residents of the UK. The principles it was originally developed upon ensured the service was provided free to meet everyone’s clinical need (NHS, 2013). This ethos is still at the core of its delivery, but additional principles have been added to its constitution to improve quality standards and to provide the public with rights as an NHS patient (Department of Health, 2012). Thus, for health professionals and the wider NHS workforce to achieve these principles, the patient needs to be central to the delivery of their healthcare. Therefore, the focus of this essay will be to explore the relationship between a positive NHS culture and increased quality of patient care. In this essay the phrase ‘positive NHS culture’ has two definitions: 1) its internal organisational structure and the working environments of staff 2) the public and patients’ perception and experiences of the NHS as service users. Due to the limited word count of this essay, the following factors will only be discussed: multi-disciplinary working, patient engagement and the role of the media.

Within an organisation, a positive work culture is the key to successful delivery to its customers, clients, service users or patients. An inclusive workplace is constantly promoted by governing bodies, trade unions and human resource professionals because it allows for greater happiness to be achieved at work through the creation of a positive working environment (Equality and Human Rights Commission, 2010). This is because when professionals are respected and their skills are valued, they feel a sense of autonomy and purpose (West et al, 2011). Furthermore, this supportive environment can create trusting relationships amongst colleagues, which can result in a positive internal work culture. Oppositely, within an organisation where there is a lack of respect and trust, the service of the quality being delivered can become compromised. For example, cases have been identified where clinicians did not trust the medical judgments of fellow clinicians and this resulted in clinical assessments being repeated on patients (NHS Institute for Innovation and Improvement, 2010). This mistrust can result in creating more worry for the patient, a negative relationship between clinicians, an increased waiting time for the result of the assessment and possibly delaying NHS services to another patient and wasting NHS money.

It can be argued that this critical approach by one clinician can ensure the diagnosis of a patient is correct; however as the UK has a high standard in its medical education progammes, the knowledge of another clinician should be respected. Also, there are other processes to ensure the diagnosis and treatment/care of the patient is suitable and of a high quality through regular discussions with allied health professionals who have been trained in a varied way to meet specific service areas. This allows alternative methods and treatments to be discussed and leads to better quality decisions on patient care (Borrill et al, 2002).

Multi-disciplinary working is essential for a large organisation like the NHS, who aim to provide healthcare for everyone regardless of what health and well-being support or treatment is needed by the patient (NHS Institute for Innovation and Improvement, 2010). It allows professionals to efficiently manage their times and reduce patient waiting times, and more importantly it ensures the patient is receiving care from the relevant expert. Multi-disciplinary working could in the future challenge the entrenched feature of ‘waiting times’ in the NHS healthcare system. It is often accepted by NHS professionals that it is normal for a patient to wait to be seen: this indirectly disrespects the status and clinical need of the patient, suggesting that their time is less valuable than the healthcare professional’s time (Leape et al, 2012).

Over time, a blame culture has developed within the NHS when poor quality of care has been delivered, or more extremely when a number of fatal cases have been reported within one trust. Multi-disciplinary working is used to promote a team effort in high quality care and it is also used to challenge and prevent poor quality care (Berwick and Department of Health, 2013). To ensure poor standards are not accepted, patient partnerships need to be created to allow patients to participate in planning future NHS care improvements. Furthermore, if healthcare professionals communicate with patients in a method which allows them to understand jargon and medical information related to their health condition, this can then empower them to make suitable decisions in regards to their healthcare (Leape et al, 2012). Furthermore, the patient may become confident enough to comment on their healthcare and also feel respected and comfortable in the medical environment which they are being treated within, hence positively influencing their perception of the NHS.

To further support the comfort patients’ feel when using the NHS services, practitioners need to have a level of emotional intelligence as well as the intellectual ability to provide high quality care. This is because ‘good health’ is a combination of mental, physical and social well-being (WHO, 1946). Intellectual ability is usually identified and revisited often in a practitioner’s healthcare training because it is thoroughly assessed. However, emotional intelligence differs within training depending on the role of the practitioner. Also, trainers of technical skills would argue it is not easy to teach emotional intelligence because it is often connected to an individual’s personality/character and the events they have experienced throughout their own personal life (Tapia and Hyter, 2015). Nursing staff initially deal with difficult patient situations where emotional intelligence is essential to solve or ease the patient’s situation. Therefore, showing care and compassion towards the patient often shows the patient they are being supported, hence improving the patient’s satisfaction towards the support offered by the nurse (Ruddick, 2015).

Media are used globally to reach a mass audience. Therefore, the NHS uses the mass media to reach a national audience for their health campaigns. Cutting down the number of smokers in the country is still a high priority to improve public health (NICE, 2015). The NHS using media campaigns for smoking cessation services, and the advice these provide has resulted in an overall positive effect for the incentive, due to the campaign reaching a mass audience (NHS Institute for Innovation and Improvement, 2013). This has been due to the development of diverse and creative advertisements being produced and made available freely to healthcare professionals, organisations and the public (NHS, 2015). These advertisements are not for online or television use only: they are often displayed or given in physical environments where patients and practitioners are present, hence making the delivery of patient care more interesting and more effective in tackling negative habits such as smoking. The extent of influence that the media has on its audience, and their thoughts and beliefs on specific topics, depend on a variety of factors; hence one single theory cannot sum up the impact of media.

Using the media to acknowledge successful NHS services is important because often the media report investigations or organisational changes. For example, the BBC reported that over 40% of NHS investigations are not carried out adequately (BBC, 2015). This suggests that the culture of the NHS is one that fails to handle a large number of patient complaints appropriately; the complaint of a patient often suggests that there was a negative event when receiving healthcare within the NHS such as medical negligence. Therefore, failing to acknowledge this can further deteriorate the perception of the NHS to the patient. Furthermore, due to the NHS being a healthcare provider it is expected by society to have a high standard service, yet the demands on the staff to provide this service is often forgotten (Griffin, 2014).

The NHS Practitioner Health Programme Team received the ‘Innovation in Mental Health in Primary Care’ award in 2014; this recognition of high quality practice was reported by various forms of media (NHS, 2014). The public were shown that these practitioners were successful and passionate individuals who were working to improve the Mental Health service within the NHS. Despite this not having a direct impact on the quality of patient care, it positively promoted the NHS and it also recognised that the mental health service in primary care was being recognised as innovative. Healthcare professionals can further promote the NHS culture as positive by using social media to engage with a larger public audience and also to connect with other healthcare professionals by increasing their participation in discussions on healthcare knowledge and alternative techniques (Cooper and Craig, 2013). This engagement can promote self-help techniques to patients and support them to manage their conditions. Self-help and self-care of conditions can reduce hospital admissions, hence directly impacting the number of patients waiting in Accident and Emergency departments, which can then allow clinicians to have more time with patients (The King’s Fund, 2010).

To summarise, patient experience is central to the quality of patient care. It seems a positive NHS culture is at the core of positive patient experience because it supports the development of relationships between the patient and the healthcare professional: this then can allow the patient to express their thoughts on the healthcare being delivered to them. In addition to this, trusting and respectful relationships can be created between professionals, who can then apply successful multi-disciplinary working to make the quality of care sufficient to meet service demands yet of a high personalised standard for each patient. Sadly, there are constraints in creating a highly positive NHS culture due to the demands put on the NHS service, diverse training of staff and the influence of the media.

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Since the pioneering experiments of allograft heart transplantation by Christiaan Barnard in 1967, there have been significant advances in the development of human organ transplantation. Indeed, over 35,000 patients in both the US and Europe benefit annually from organ transplantation (Hampton, 2005). Through the transplantation and engraftment of these organs, not only can biological function of organs be restored, but also the quality of life of recipients can be greatly increased. As a result the number of transplantation operations carried out each year has increase exponentially over the past decades. Despite improvements in surgical techniques, the hurdle of immunological rejection by the host of transplanted organs still remains a current obstacle. This represents a challenge both scientifically and clinically and, as a result, is a focus of both the medical and scientific communities.

Over the past 60 years, there has been an exponential increase in the development of immunosuppressive drugs in order to treat organ rejection, as well as autoimmune diseases (Gummert et al. 1999). These drugs seek to suppress various components of the immune system in order to prevent rejection in the context of organ transplantation. This essay seeks to examine the broad immunology of transplantation as well as the different classes of immunosuppressive drugs and their associated benefits and side effects.

Transplantation is broadly defined as the act of transferring cells, tissues, or organs from one site to another. In the context of organ transplantation, this is generally from one person to another, with transplantation classed as either from a living donor or cadaveric. Although less common, there has been some attempt to transplant organs from other animals, known as xenografts. This was initially attempted given the lack of availability of human donor organs. However, as transplantation occurs between two immunologically distinct persons, a degree of immunological mismatch occurs. Due to this mismatch, the host immune system recognises the donor organ as ‘foreign’ and, as a result, activates various arms of the immune system.

Several types of immune rejection can occur in individuals undergoing organ transplantation. Hyperacute rejection occurs when pre-existing antibodies within the host against donor antigens attack the graft and result in rapid rejection of the graft, typically within a few hours (Murphy et al. 2010). This results in rapid declining function of the graft and is often non-reversible, thereby causing the recipient to lose the graft. In contrast, acute rejection occurs within six months following transplantation and is the result of activated T cells against donor antigens (Murphy et al. 2010). The third type of rejection is known as chronic rejection and, as the name suggests, occurs years after transplantation and is mediated by both antibodies and T cells. In order to encourage graft survival, and prevent the aforementioned from occurring, effective regimes in order to suppress these immune responses have been developed, although as outlined, they often come with significant side effects.

Glucocorticoids, such as prednisone, are commonly used in immunosuppressive regimes. These drugs seek to prevent rejection by suppressing various arms of the immune system including T cells, B cells, macrophages, granulocytes and monocytes (Steiner and Awdishu, 2011). These drugs are, therefore considered to be relatively non-specific and highly potent leading to a range of side effects. Glucocorticoids exert their effects by regulating the activity and expression of various cytokines through inhibition of intracellular signalling pathways such as NF-kB. Through modulation of this complex signalling pathway, the production of pro-inflammatory cytokines such as IL-1, IL-6 and TNF-alpha are greatly reduced (Schacke et al. 2002). Although these drugs feature heavily in clinical practice, they are associated with a significant number of side effects. Prolonged glucocorticoid use can lead to Cushing’s syndrome: a constellation of symptoms characterised by increased central adiposity, ‘buffalo hump’, osteoporosis and a round face (Schacke et al. 2002). These symptoms are due to excess exogenous cortisol within the body and therefore have multiple endocrinological effects on various physiological processes. The concentration of such drugs are therefore closely monitored and patients are encouraged to monitor for symptoms suggestive of Cushing’s syndrome.

As well as glucocorticoids, drugs known as antimetabolites are frequently used in immunosuppressive regimes. These drugs, such as azathioprine and mercaptopurine, amongst others, were originally developed in the 1950s, but remain used to this day. Azathioprine is commonly used for liver and kidney transplantation (Germani et al. 2009), as well as for the treatment of autoimmune conditions such as rheumatoid arthritis (Whisnant and Pelkey, 1982). Antimetabolites exert their immunosuppressive effects by blocking the synthesis of purine within cells (Murphy et al. 2010). Through the blockage of purine synthesis, DNA replication is unable to take place, thereby preventing expansion of rapidly dividing cells within the immune system. Through the blockade of T and B cell expansion, the level of rejection against organ transplants can be controlled.

One considerable side effect associated with the use of azathioprine is the increased risk of skin cancer. A relatively recent review by Ulrich and Stockfleth (2006) has shown that sunlight exposure, pre and post transplantation in patients using azathioprine, correlates with an increased incidence of skin cancer. As exposure to UVA light damages skin cells: these cells are unable to undergo repair following damage, due to inhibition of DNA replication from azathioprine. In the long term, this accumulation of damage results in the increased propensity for patients to develop skin cancer. Current clinical guidelines suggest that clinicians discourage patients in spending prolonged periods of time in the sun following transplantation (Perrett et al. 2008).

Along with these classes, of drugs, another category of immunosuppressive medications, known as calcineurin inhibitors, also work efficaciously in organ transplantation. These drugs, which include tacrolimus and cyclosporine, act by inhibiting the protein calcineurin. Calcineurin in activated following the presentation of an antigen by an antigen presenting cell, such as a dendritic cell or macrophage, to a T cell, resulting from an increase in the concentration of intracellular calcium (Reynolds and Al-Daraji, 2002). Following the activation of calcineurin, there is an increase in the production of interleukin 2 (IL-2), which causes the activation of T cells. As a result, this further propagates an immune response. Calcineurin inhibitors are, therefore, useful in dampening an immune response, preventing the activation of T cells against a transplanted organ. Calcineurin inhibitors are popular drugs used in renal transplantation. However, evidence over the past decade has suggested that drugs such as tacrolimus may induce renal failure in some patients (Ponticelli, 2000). Obviously this a key consideration when considering patients who already have poor renal function to being with. As a result, these drugs are often combined with other immunosuppressive agents and tailored to the lowest dosage possible.

The understanding into the way in which the immune system functions has been exploited over the past thirty years with the development of monoclonal antibodies. Monoclonal antibodies were first developed in the 1970s through the fusion of rapidly proliferative myeloma cells with B cells to produce hybridomas (Liu, 2014). Antibodies are protein molecules that have a specific antigen-binding region enabling them to have a high degree of specificity. Antibodies have, therefore, been exploited therapeutically in order to target pathogenic molecules within the body.

Recently, monoclonal antibodies have been developed to target various components of the immune responses in order to modulate organ rejection seen in patients. In particular, monoclonal antibodies have been developed to target T and B cells. Some examples of these therapeutics are discussed below.

Muromonab is a monoclonal antibody, which is specific for cluster of differentiation 3 (CD3), a molecule found primarily on T cells (Murphy et al. 2010). By targeting T cells and preventing their activation against the transplanted organ, there is considerable evidence to show that this can significantly prolong the survival of the organ following transplantation, compared to glucocorticoid steroids (Authors not listed, 1985). However, despite the success of anti-CD3 therapy, there are substantial side effects associated with clinical use. Use of anti-CD3 has been associated with severe fever in patients, as well as the unwanted release of pro-inflammatory cytokines (Norman et al. 2000). As a result the use of anti-CD3 has declined in clinical practice and is reserved for treatment resistant cases of organ rejection.

As well as muromonab, another mainstay treatment for organ rejection are antibodies directed against cluster of differentiation number 25 (CD25). Organ rejection is heavily mediated by T cells, in combination with other arms of the immune system (Ingulli, 2010). When activated, T cells produce large amounts of IL-2, a cytokine that acts in an autocrine fashion to further expand T cells via the IL-2 receptor CD25. Therefore, blockade of CD25 with a monoclonal antibody was hypothesised to offer a novel target in treating immunological rejection by T cells. As a result, daclizumab was developed and was shown by Vincenti et al. in 1998 to be a successful tool in treating renal transplantation compared to using a combination therapy of cyclosporine, azathioprine and corticosteroids. Furthermore, more long term studies have examined the function of renal transplants and concluded that patients on daclizumab showed improved renal function, as established by estimated glomerular filtration rate (GFR) (Ferran et al. 1990). However, like other pharmacological treatments, daclizumab has also been shown to cause a significant number of side effects such as hypertension and insomnia (EPAR for Zenapax).

More recently, the scientific community has sought to develop more refined immunological tools in order to modulate rejection. Through the development of monoclonal antibodies targeting cluster of differentiation 52 (CD52), clinicians are able to target lymphocytes for destruction, sparing the destruction of resident haematopoetic stem cell populations (Flynn and Byrd, 2000). Anti-CD52 drugs were originally developed for multiple sclerosis (Coles et al. 2008) and trials are currently being undertaken to establish their efficacy in organ transplantation.

The overarching side effect with immunosuppressive regimes is the relatively blanket level of immunosuppression which they cause. Although immunosuppression is required to maintain organ survival, immunosuppression also results in a reduced ability to fight infections. In particular, pulmonary infections are common in organ transplant patients, with Hoyo et al. (2012) detailing that around 1 in 5 patients in their study developed pulmonary infections. It is clear that clinicians dealing with organ transplantation patients must remain vigilant for infections. It is similarly clear, therefore, that a fine balance of the level of immunosuppression should be reached: a heavily weighted level will pre-dispose to opportunistic infections, and, conversely, a lightly weighted level will result in organ rejection.

With respect to future outlooks in transplantation immunology, the development of pluripotent stem cells has been hypothesised to overcome immunological issues associated with organ transplantation. Through the use of induced pluripotent stem cells (iPS cells) developed by Takahashi et al. (2006) it has been shown that it is possible to differentiate nearly all existing cell types. As these cells are derived from the patient, they are immunologically matched to the individual and, as a result, patients would not require harsh immunosuppressive regimes. Although this technology has not been tested clinically in patients extensively yet, it is hoped that within the next twenty years this method will provide an unlimited source of organ replacement for patients. Use of such cells is currently being explored for regeneration of certain organs such as the heart (Masumoto, 2014). Use of these cells will require a significant amount of clinical testing to determine their immunological properties, as well as their propensity to develop into tumours. It is likely, therefore, that the clinical applications of stem cells are still many years away.

In conclusion, despite significant improvements in targeted immunosuppressive regimes, significant side effects are associated with current pharmacological treatments. Clearly, as patients treated with these agents are often susceptible to opportunistic infections, their progress must be monitored closely by a clinician who is familiar with such patients, and the complications they can present with. Through our increased understanding of the immune system, alongside new technologies such as stem cell replacement therapy, it is hoped that the immunological issues associated with organ transplantation will in the near future be overcome.

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This work was produced by one of our professional writers as a learning aid to help you with your studies

Identify a patient, stating the reason for admission/appointment. It must be on diabetes. Describe a specific problem that has been highlighted through the assessment process. Explore factors that may have led to their hospital admission/appointment. This could include physical psychological and social aspects.

Case details

In this essay we shall discuss the case of Mrs Singh. She is an elderly lady of 76 yrs. old. Who lives in warden assisted accommodation. She has done so for the last ten years since her husband died. She has had Type II diabetes mellitus for the last 17 years, and copes reasonably well considering her age and her comparative infirmity. She has been able to go out and get her shopping from the nearby shops and is otherwise self-caring, clean and tidy.

According to the referral letter from her General Practitioner, who arranged this admission to hospital, a number of people had recently commented that she looked ill and was not caring for herself as well as she used to do. Her family live a considerable distance away from her and, although they see her about once or twice a month, they do not stay for long as they have a business to run.

When she was admitted she was found to be lucid and coherent but her family told us that she had had a number of episodes of confusion recently. She was occasionally very sleepy and had left the gas burning on one occasion. She had a large infected ulcer on her left shin, which had clearly been there for a matter of weeks, but because of her habit of wearing long skirts, no one had noticed it. She had a degree of ankleoedema, but her physical examination was otherwise unremarkable, apart from the fact that she had a BMI in excess of 29. She is a moderate smoker.

Discussion

Mrs Singh as an individual is clearly unique, but sadly, she also represents a great many elderly diabetic patients who live in similar conditions. The thrust of this particular discussion will be the aetiology and management of her condition with particular relevance to her leg ulcer.

Diabetes Mellitus, an overview

Diabetes is a comparatively common disease process in the UK. In children it is the commonest major illness (after childhood infections). There are approximately 1.5 million diabetic patients in the UK at present and the number is relentlessly increasing. (Devendra et al 2004).

The 1.5 million are not equally spread across all segments of the population. People from the Asian and Afro-Caribbean ethnic backgrounds have a markedly increased risk of developing Diabetes Mellitus (UKPDSG 1998) with one in four of all Afro-Caribbean women over the age of 55 being diabetic. (Nathan 1998).

Increasing age and BMI also are both independent risk factors for Diabetes Mellitus (James 1997). Of this number, it is expected that about 10% will develop some form of lower limb ulceration while they are diabetic. (Amos et al 1997). To some extent, it is statistically more likely that those patients who have poor control of their diabetic state will develop ulceration (and other complications) than those patients who have good control.

The other factor that is relevant in the aetiology of leg ulceration is the length of time a person is diabetic. Chronicity of the disease process is an independent variable for leg ulceration. (Simon P et al 2004).

A number of authorities have estimated the burden of cost of Diabetes Mellitus to the NHS. A recent study by Newrick (et al 2000) considered that 9% of the total NHS budget was spent on diabetes and diabetic related issues. By far the biggest single portion of that amount (over half) was on the treatment of complications and the commonest clinically relevant complication is that of venous ulceration (Ellison et al2002)

We can start by considering the pathophysiology of Diabetes Mellitus

Pathophysiology

This is a huge subject in its own right and we shall therefore present a brief overview as far as it is relevant to Mrs Singh. In broad terms Diabetes Mellitus is a condition where the body loses the ability to metabolise carbohydrates in general and glucose in particular.

Glucose is absorbed from the gut, transported to the liver where is can be stored as glycogen, and then transported through the bloodstream to the cells in the periphery of the body, where it is one of the main metabolic substrates. It is absorbed from the blood into the cells by a specific molecular carrier system and this is totally insulin dependent.

If there is a failure of insulin production, then the circulating level of insulin falls and the glucose is not transported into the cells. This leads, initially to hyperglycaemia and finally to ketosis and metabolic failure. This is the situation of Type I diabetes mellitus.

The alternative is Type II diabetes mellitus where the cells lose the ability to respond to the circulating insulin levels. This also results in hyperglycaemia and eventual metabolic failure but is characterised by high levels of circulating insulin. In general terms, Type I diabetes mellitus is a comparatively acute illness whereas Type 1 diabetes mellitus tends to be far more chronic, sometimes taking many months or even years to become clinically apparent. (after Donnelly et al 2000)/

The complications of Diabetes Mellitus are many. The largest group are the micro- and macro vascular group of the cardiovascular complications.

(Stratton I et al 2000). The macro vascular group are usually related to the process of atherosclerosis and present with either degrees of myocardial is chaemia or as peripheral impairment such as intermittent claudication or ulceration. In general terms the incidence of this type of complication is directly associated with the average levels of HbA1 (which is a long term indicator of diabetic control) (HSG 1997).

Nursing interventions

The major nursing intervention to discuss here is the management of the leg ulcer. In any medical intervention its important to establish a sound evidence base (Sackett, 1996). We shall therefore quote the literature relevant to each point.

The first, and arguably most important consideration is whether the ulcer is primarily venous, arterial or (more rarely) neuropathic in origin. This is comparatively easily determined by an assessment of the ankle/brachial pressure ratio. This is measured by means of a Doppler measure and the ratio is easily calculated. If it is less than the critical level of 0.8 it is likely that an significant arterial element is present.(Partsch H. 2003).

Mrs Singh was treated with a 4 layer bandage. Her ratio was significantly above the 0.8 threshold and the main aetiology of her ulcer was therefore judged to be venous.

The composition and construction of a 4-layer bandage is very specific but it can be individually modified to suit the demands of the individual patient. The first layer is a cotton wool based bandage with the primary purpose of absorbing the copious amounts of exudates that are common with this type of ulcer. It also has the secondary purpose of spreading the pressure evenly across the underlying tissues the second layer is a crepe bandage which has the prime function of holding the lower layer in place. The third layer is a compressive layer, usually an elastic type of bandage is then applied and this is covered by a final binding layer. (Nelsonet al. 2004).

The rationale behind the bandage is that in the typical diabetic venous ulcer there is an increased pressure at the venous end of the capillary bed which translates into stagnation in the capillary blood flow which renders the tissues less viable because of poor oxygenation. By exerting physical pressure of about 40 mm Hg on the tissues, this increase of venous pressure is negated and the circulation improved.(Thomas S. 2003).

Clearly it follows that in an arterial ulcer, as there is a reduction in the arterial pressure at the arterial end of the capillary bed, any increase in physical pressure could further reduce the blood flow across the capillary bed, which is why it is vital to differentiate between the two types before applying the bandage.(Marston W et al. 2003).

The second main nursing intervention, and possibly more beneficial in the longer term, would be the Health Promotion aspects of the nursing relationship. Mrs Singh is overweight. Her BMI is about 29 which means that her weight is not only contributing to the reduction in venous return, and thereby contributing to both the aetiology and the persistence of her ulcer, but the obesity is also a major factor in the aetiology of her Type II diabetes mellitus. If Mrs Singh can be persuaded to reduce her weight, her need for hypoglycaemic medication may well lessen. It is possible that it may reduce to the point that she could manage her condition on diet alone. (Terry T-K et al 2003).

Smoking is not only an independent risk factor for Type II diabetes mellitus, but it is also a risk factor for cardiovascular disease. A major health promotion measure would therefore be to help Mrs Singh to give up smoking. This is not a short term measure, so is not particularly suited for hospital intervention, although the nursing staff spent a considerable amount of time with Mrs Singh to explain the problems associated with smoking. (Marks-Moran & Rose 1996).

On discharge she was referred to, and seen by, the smoking cessation nurse at the local primary healthcare team. The whole concept of patient empowerment and education is most important in this field. If a patient understands why they are being asked to do something, they are much more likely to comply with the request from the healthcare professional (Marinker M.1997).

The weight reduction needs to be carefully managed if it is to be successful. She was referred to the dietician who prescribed a low fat, carbohydrate regulated, 1,200 cal. per day diet. Because this is clearly going to be a long term intervention, arrangements were made for Mrs Singh to be followed up in the community dietetic clinic.

Mrs Singh was in hospital for seven days when the multidisciplinary discharge team were able to arrange her discharge. This involved the assistance of an occupational therapist to assist with minor home modifications and the community nurses who continued the treatment with the 4 layer bandage.

(Harrison, I. D et al 2005) The diabetic specialist nurse was also involved. As Mrs Singh’s weight slowly reduced she was able to reduce and finally come off her hypoglycaemic medication.

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In the Australian tertiary health care system, ‘best practice’ in the care of a terminally-ill neonate and the neonate’s family centres on the provision of ‘holistic care’. Neonates and their families are considered an interdependent system; therefore, holistic care involves the complete physical and psychological care of both the neonate and the family. However, quality holistic care can be challenging for nurses to achieve, particularly in a complex palliative model of care. This paper discusses the best practice holistic care of a terminally ill neonate and the neonate’s family in the context of the Australian tertiary health care system.

The term ‘palliative care’ refers to the withholding and / or withdrawal of life sustaining treatment in patients with terminal illness, to prevent or relieve suffering and allow death to occur (World Health Organisation, 2015). In all patients, and children in particular, the World Health Organisation (2015: n.p.) highlights that palliative care must be a holistic process, one which provides “active total care of the child’s body, mind and spirit, and [which] also involves giving support to the family”. Palliative care is concerned with providing a terminally ill neonate with the best conditions in which to live and with facilitating a comfortable death (Ahern, 2013; Bergstraesser, 2013). As parents are fundamental in the decision-making processes around neonatal palliation and as it is they who will be the most significantly affected by these decisions (Branchett & Stretton, 2012; Larcher, 2013), neonatal palliative care places a particular focus on caring for parents. There is consensus in the academic literature for palliation as the best model of care for neonates who are terminally ill; indeed, both the Australian College of Neonatal Nurses (2010) and the Royal Australian College of General Practitioners (2014) highlight palliative care as a best-practice option for terminally ill neonates in the Australian context.

It is accepted that the parents of a terminally-ill neonate in palliative care require significant emotional support from neonatal nurses and other members of the health care team. Parents of palliated neonates often experience a complex emotional reaction to their situation, typically one of grief, shock and confusion (Badenhorst & Hughes, 2007; Gardner & Dickey, 2011). They may also experience feelings of profound loss, related not only to the impending loss of their child but also to a loss of their expectations, aspirations, role as parents and family dynamic, etc. (Gardner & Dickey, 2011). Additionally, it is not uncommon for parents to feel indecisiveness, shame or guilt about the decision to palliate their neonate (Reid et al., 2011), particularly when the outcome of the neonate’s condition is uncertain. There is evidence from one early Australian study to suggest that women who experience neonatal loss have significantly higher rates of psychological distress and a greater risk of clinical depression than other mothers (Boyle et al., 1996). Thus, it is essential for neonatal nurses to validate the complex emotions the parents of a palliated neonate experience as being part of a normal and healthy psychological process (Badenhorst & Hughes, 2007). The provision of a clinical environment where parents’ complex emotions can be expressed and explored is also important.

Best-practice models of neonatal palliative care recommend that parents take a lead role in the care of their infant, both in terms of decision-making and practical care (PSANZ, 2009; Australian College of Neonatal Nurses, 2010). Whilst some parents may resist providing care for and thus becoming attached to a palliated neonate, fearing that this will increase the degree and duration of their grief following the child’s death, there is evidence to suggest this is not the case for many parents (Gardner & Dickey, 2011). There is also evidence which indicates that many parents regret not spending more time with their deceased neonate, both prior to and following death (Williams et al., 2008). Thus, the literature recommends that parents should be treated by neonatal nurses as ‘welcome partners’ in the care of their baby (Griffin, 2013). Parents should also be encouraged and supported to be involved in the care of their baby to the extent that they feel comfortable doing so (PSANZ, 2009).

So that parents may be meaningfully and safely involved in the care of their palliated baby, it is important that neonatal nurses provide them with the information they require to make informed decisions – and this may begin in the palliation planning phase. Developing a flexible, transparent and family-centred palliation plan is essential, and so that their preferences are met, parents should take a key role in this process (Williamson et al., 2009). The palliation plan must focus on enabling ‘open caregiving policies’, highlight parents’ wishes for their neonate and be legally documented (Breeze et al., 2007; Wiliamson et al., 2009; Gardner & Dickey, 2011). Whilst most parents wish to be involved in decisions and planning around end-of-life care for their neonate, they may find this responsibility overwhelming (Williams et al., 2008). Parents will be exposed to a range of options and opinions which they must synthesise in order to make the best decisions for their family; however, it is important for neonatal nurses to realise that highly emotive situations can often cause significant deficits in parents’ ability to comprehend and process such information (Williams et al., 2008). Evidence suggests that repetition printed literature is important in the provision of information to parents in situations involving neonatal death (PSANZ, 2009). The timing and delivery of the information provided by neonatal nurses should also be carefully planned to ensure maximal uptake (PSANZ, 2009).

Australian guidelines recommend that when supporting the parents of a palliated neonate, neonatal nurses focus on the normalcy of parenthood wherever possible (PSANZ, 2009). Neonatal nurses should assist parents to engage in normal parenting opportunities – including holding, changing and bathing their baby, and routine interactions such as reading cues and providing comfort – if they feel able to do so (PSANZ, 2009). For babies with longer palliative periods and where the baby’s condition permits, feeding – including breastfeeding or the feeding of expressed breast milk – is also an important consideration. Normal rituals associated with infancy, such as naming ceremonies and baptism, should also be followed if the family consider these to be important (PSANZ, 2009; Weidner et al., 2011).

A palliated neonate’s relationship with extended family may also be an important consideration for many families. Though visiting in intensive care nurseries is often restricted to parents, photographs and videos of the baby may be shared with extended family members and these relatives may be encouraged to send toys, clothing and nursery decorations, etc. for the baby in return (PSANZ, 2009). Research suggests that the support of family is a significant factor in the recovery of parents from the death of a neonate; indeed, the grief of parents may be enhanced when there is a lack of familial engagement with a palliated neonate (Gardner & Dickey, 2011). Grief of the family itself is also essential to consider; for example, there is evidence to suggest that better outcomes are achieved when grandparents and siblings are engaged with parents in the process of bereaving a deceased neonate (Roose & Blanford, 2011).

The literature suggests that the creation of tangible memories is fundamentally important to the parents of a palliated neonate, and this is included as a recommendation in Australian perinatal mortality guidelines (Capitulo, 2005; PSANZ, 2009). Memories collected may include photographs and videos, prints or casts of the hands and feet, locks of hair, identification bracelets or cards, toys and gifts, nursery decorations, and blankets, hats or clothing, etc. (De Lisle-Porter & Podruchny, 2009; PSANZ, 2009). It is important to note that many parents, and particularly those in denial of their baby’s palliative state, may resist collecting such memories; in this case, it is recommended that hospitals do so and hold these with the baby’s clinical documentation until such time as the family is ready to receive them (PSANZ, 2009).

So that parents may maximise the quality time they spend with their neonate, it is important for neonatal nurses consider the wider social factors which may affect them and their families (Ahern, 2013). Issues related to finances, employment commitments, accommodation, transport and the care of other children should be referred to a hospital social worker. Where required, postnatal medical attention in a clinical area where the mother will not be in close proximity to other healthy neonates, in addition to the suppression of lactation, are important (Badenhorst & Hughes, 2007). The environment in which the palliative care takes place must also be considered; Australian guidelines suggest that this environment should be private, comfortable, peaceful and supportive (Kain, 2006; PSANZ, 2009).

Once the decision has been made to palliate a neonate, all treatment which is not essential to the baby’s comfort must be withheld and withdrawn. This includes removing all inessential intravenous lines, invasive ventilation, monitors and pharmaceutical treatment. As the neonate begins to decline physiologically and the activity of the gastrointestinal system reduces, nasogastric feeding and hydration should also be ceased (Porta & Frader, 2007). Administering an appropriate dose of narcotic analgesia to relieve discomfort and sedate the respiratory drive may be useful (Williams et al., 2008; Carter & Jones, 2013); however, parents should be assured that this does not constitute euthanasia, which is illegal in Australia. At this stage, the end-of-life rituals should be conducted according to parental preference (Ahern, 2013). As the neonate progressively declines, it is essential that neonatal nurses prepare parents with information about how the baby’s death will likely occur. This includes the possibility of the neonate rapidly decompensating and displaying distressing signs such as hypoxic agitation, gasping, intercostal recession, pallour and temperature loss (Brosig et al., 2007; Williams et al., 2008; Carter & Jones, 2013). Information provided should also include the fact that timing to death cannot be predicted (Williams et al., 2008). Parents should be given a choice as to whether they remain with the neonate during death.

Following death, parents should be provided with the opportunity to hold, change or bathe their baby if they wish to do so (PSANZ, 2009). Whilst many parents are reluctant to or even fear engaging with their deceased baby, there is evidence to suggest that no parent regrets this experience and that many find it valuable (Capitulo, 2005). The policies of most maternity services in Australia allow parents to view their neonate as many times they wish, and some may also provide parents with the option of taking the baby home for a short period (PSANZ, 2009). Once the parents are ready, neonatal nurses should assist them to complete death registration and autopsy documents, as appropriate. Nurses should also support parents to organise a funeral through a company of their choice; in Australia, a funeral is legally required for all neonates born at or over 20 weeks gestation. A funeral is particularly important for many parents in terms of achieving closure (Williams et al., 2008).

Most literature recommends that the parents who have experienced a neonatal death receive ‘early supported discharge’ from hospital (Gardner & Dickey, 2011). Referral to support services in the parents’ own community – including general practitioners, counsellors and peer support groups, etc. – are essential considerations. Follow-up is also important; for example, if an autopsy was performed, neonatal nurses should communicate these results to parents in a timely manner (PSANZ, 2009; Reid et al., 2011). Additionally, many parents find personal follow-up, including telephone calls and cards, from the neonatal nurses who cared for their baby to be meaningful (Weidner et al., 2011), reinforcing that their child was important and will be remembered.

In the Australian tertiary health care system, ‘best practice’ in the care of a terminally-ill neonate and the neonate’s family centres on the provision of ‘holistic care’. As they are an interdependent system, holistic care involves the complete physical and psychological care of both the neonate and the family. This paper has discussed the best practice holistic care of a terminally ill neonate and the neonate’s family in the context of the Australian tertiary health care system. It has demonstrated that whilst holistic care may be challenging to achieve, it is essential in delivering the best positive outcomes in a complex situation such as neonatal palliation.

References

Ahern, K., (2013), ‘What neonatal intensive care nurses need to know about neonatal palliative care’, Advances in Neonatal Care, vol. 13, no. 2, pp. 108-114.

Australian College of Neonatal Nurses 2010, Palliative Care in the Neonatal Nursery: Guidelines for Neonatal Nurses in Australia, viewed 04 October 2015, https://acnn.sslsvc.com/acnn-resources/clinical-guidelines/G3-Palliative-care-in-the-neonatal-nursery.pdf

Badenhorst, W., & Hughes, P., (2007), ‘Psychological aspects of perinatal loss’, Clinical Obstetrics & Gynaecology, vol. 21, no. 2, pp. 249-259.

Bergstraesser, E., (2013), ‘Pediatric palliative care: When quality of lie becomes the main focus of treatment’, European Journal of Pediatrics, vol. 172, no. 2, pp. 139-115.

Boyle, FM., Vance, JC., Najman, JM., & Thearle, JM., (1996), ‘The mental health impact of stillbirth, neonatal death or SIDS: Prevalence and patterns of distress among mothers’, Social Science & Medicine, vol. 43, no. 8, pp. 1273-1282.

Branchett, K., & Stretton, J., (2012), ‘Neonatal palliative and end of life care: What parents want from professionals’, Journal of Neonatal Nursing, vol. 18, no. 2, pp. 40-44.

Breeze, ACG., Lees, CC., Kumar, A., Missfelder-Lobos, HH., & Murdoch, EM., (2007), ‘Palliative care for prenatally diagnosed lethal fetal abnormality’, Archives of Disease in Childhood, vol. 92, no. 1, pp. 56-58.

Brosig, CL., Pierucci, RL., Kupst, MJ., & Leuthner, SR., (2007), ‘Infant end-of-life care: The parents’ perspective’, Journal of Perinatology, vol. 27, no. 510-516.

Capitulo, KL., (2005), ‘Evidence for healing interventions with perinatal bereavement’, The American Journal of Maternal Child Nursing, vol. 30, no. 6, pp. 389-396.

Carter, BS., & Jones, PM., (2013), ‘Evidence-based comfort care for neonates towards the end of life’, Seminars in Fetal & Neonatal Medicine, vol. 18, no. 2, pp. 88-92.

De Lisle-Porter, M., & Podruchny, AM., (2009), ‘The dying neonate: Family-centred end-of-life care’, Neonatal Network, vol. 28, no. 2, pp. 75-83.

Gardner, SL., & Dickey, LA., (2011), Grief and Perinatal Loss, in SL Gardner, BS Carter, M Enzman-Hones & JA Hernandez (eds.), Merenstein & Gardner’s Handbook of Neonatal Intensive care, Australian Academic Press, Queensland.

Griffin, T., (2013), ‘A family-centred ‘visitation’ policy in the neonatal intensive care unit that welcomes parents as partners’, The Journal of Perinatal & Neonatal Nursing, vol. 27, no. 2, pp. 160-165.

Kain, VJ., (2006), ‘Palliative care delivery in the NICY: What barriers to neonatal nurses face?’, Neonatal Network, vol. 25, no. 6, pp. 387-392.

Larcher, V., (2013), ‘Ethical considerations in neonatal end-of-life care’, Seminars in Fetal & Neonatal Medicine, vol. 18, no. 2, pp. 105-110.

Perinatal Society of Australia and New Zealand (PSANZ) 2009, Clinical Practice Guideline for Perinatal Mortality, viewed 04 October 2015, http://www.stillbirthalliance.org.au/doc/Section_1_Version_2.2_April_2009.pdf

Porta, N., & Frader, J., (2007), ‘Withholding hydration and nutrition in newborns’, Theoretical Medicine & Bioethics, vol. 28, no. 5, pp. 443-451.

Reid, S., Bredemeyer, S., van den Berg, C., Cresp, T., Martin, T., Miara, N., Coombs, S., Heaton, M., Pussell, K., & Wooderson, S., (2011), ‘Palliative care in the neonatal nursery’, Neonatal, Paediatric & Child Health Nursing, vol. 14, no. 2, pp. 2-8.

Roose, RE., & Blanford, CR., (2011), ‘Perinatal grief and support spans the generations: Parents’ and grandparents’ evaluations of an intergenerational perinatal bereavement program’, Journal of Perinatal & Neonatal Nursing, vol. 25, no. 1, pp. 77-85.

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Weidner, NJ., Cameron, M., Rebecca, C., McBride, J., Mathias, EJ., & Byczkowski, TL., (2011), ‘End-of-life care for the dying child: What matters most to parents’, Journal of Palliative Care, vol. 27, no. 4, pp. 279-286.

Williams, C., Munson, D., Zupancic, J., & Kirpalani, H., (2008), ‘Supporting bereaved parents: Practical steps in providing compassionate perinatal and neonatal end-of-life care’, Seminars in Fetal and Neonatal Medicine, vol. 13, no. 5, pp. 335-340.

Williamson, A., Devereux, C., & Shirtliffe, J., (2009), ‘Development of a care pathway for babies being discharged from a level 3 neonatal intensive care unit to a community setting for end-of-life care’, Journal of Neonatal Nursing, vol. 15, no. 5, pp. 164-168.

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Aboriginal and Torres Strait Islander people, referred to as ‘Indigenous Australians’, experience significantly poorer health outcomes than non-Indigenous Australians. This is particularly true for Indigenous women. The difference in life expectancy between Indigenous and non-Indigenous women is some 9.5 years, and Indigenous mothers are three times as likely as non-Indigenous mothers to die during childbirth (AIHW, 2014a; AIHW, 2014b). There are many complex, interrelated social factors which impact the health of Indigenous people. This paper provides a critical analysis of the social determinants of health for Indigenous mothers in particular.

Education is one of the most fundamental social determinants of health, and this is particularly true for Indigenous Australians. Education enables Indigenous women to access and interpret health-related information to prevent ill health, and it also improves their capacity to engage effectively with the health care system when necessary (Jones et al., 2014). In Indigenous women, higher levels of education are directly linked with positive health outcomes; for example, an Indigenous woman is less likely to smoke if she completes secondary schooling (Australian Government Department of Health & Ageing, 2012; Biddle & Cameron, 2012). However, Indigenous women have poor rates of formal education attainment; just 29% of Indigenous people complete Year 12 compared with a national average of 73% (ABS, 2012). Indigenous women with a lower standard of education are more likely to bear a child in their adolescent years, a particular problem for Indigenous women generally, and are also more likely to have a child with a low birthweight (Comino et al., 2009; Osborne et al., 2013). Additionally, Indigenous mothers with lower standards of education are more likely to children with poor educational outcomes; this highlights the significant problems associated with the intergenerational transfer of health and social risk in Indigenous communities (Benzies et al., 2011).

Education is related directly to an Indigenous woman’s level of economic participation – specifically, her ability to gain employment and earn an adequate income, both of which are key predictors of health (Osborne et al., 2013). Research suggests that an Indigenous person’s chance of gaining employment increases by 40% if they complete Year 10 and by 53% if they complete Year 12 (New South Wales Government Department of Education & Training, 2004). However, as with low education, low employment is a significant problem for Indigenous women; indeed, rates of unemployment for Indigenous women are above 16%, compared with a national average of just 4% (ABS, 2013). Economic disadvantage resulting from unemployment is a significant predictor of poor health. Booth and Carrol (2008) suggest that economic variables can explain up to 50% of the disparity in health between Indigenous and non-Indigenous Australians. Additionally, and demonstrating the cyclical nature of socioeconomic disadvantage and poor health in Indigenous communities, research also suggests that poor health may explain 60% of the disparity in employment participation between Indigenous and non-Indigenous women (Kalb et al., 2011).

Unemployment and socioeconomic disadvantage may affect the health of Indigenous women in a range of ways. Primarily, limited disposable income – in combination with a lack of food storage and cooking facilities within households and, particularly within remote communities, lack of access to fresh food itself – means indigenous women have reduced access to nutritionally-appropriate foods and lower food security (Osborne et al., 2013; Browne et al., 2014). Indeed, the diets of Indigenous people in many regions are characterised by a high intake of saturated fats, refined carbohydrates and salt, and little to no intake of fresh fibre-rich foods (ABS, 2006). In Indigenous women, as in all women, nutrition is fundamental to health in the ante-, intra- and post-partum periods (Browne et al., 2014). Poor dietary intake leads to high rates of gestational diabetes mellitus among Indigenous mothers – 5.1%, compared with a national average of 4.5% (2000-2009 estimate) (Chamberlain et al., 2014). Poor nutritional status also underpins the burden of chronic disease evident in Indigenous women and particularly chronic diseases related to obesity, which are a significant problem in Indigenous communities (Liaw et al., 2011). Around 60% of Indigenous women aged 25-55 years have a body mass index which indicates they are ‘obese’ (ABS, 2006). Because of the risks posed by chronic disease, Indigenous mothers are significantly more likely than non-Indigenous mothers to require antenatal hospital admission (Badgery-Parker et al., 2012). Additionally, maternal chronic disease means that around 11% of indigenous neonates have a low birthweight (ABS, 2014). This is an important marker for increased risk of chronic disease, again demonstrating the cyclical nature of socioeconomic disadvantage and poor health outcomes in Indigenous communities.

Socioeconomic disadvantage has a variety of other impacts on Indigenous mothers. For example, lack of employment and poverty mean that many Indigenous women have reduced access to appropriate housing. Up to 28% of Indigenous people live in housing which is severely overcrowded and where basic facilities – including showers, toilets and stoves – are not available or do not work (Osborne et al., 2013). Compounding the issue of poor housing is the fact that Indigenous Australians, and particularly those living in regional and remote communities, have disproportionate access to essential health infrastructure such as safe drinking water, rubbish collection services, sewerage systems and a reliable supply of power (Australian Human Rights Commission, 2007; Osborne et al., 2013). Indeed, lower standards of housing health infrastructure in Australian communities contribute directly to the high rates of parasitic and bacterial infection and increased rates of physical injury – for example, from house fires – among Indigenous women (Bailie & Wayte, 2006).

Inappropriate, overcrowded housing has had other impacts on Indigenous mothers. Specifically, it has led to breakdowns in traditional, complex social structures, norms and spiritual practices in Indigenous communities (Osborne et al., 2013). This has resulted in increases in the rates violence, including domestic violence, perpetrated against Indigenous women; indeed, Indigenous women are 40 times more likely than non-Indigenous women to experience violence, and are 35 times more likely to experience intra-familial violence which results in hospitalisation (Osborne et al., 2013). Indigenous people are also significantly more likely than non-Indigenous people to experience sexual assault (Phillips & Park, 2006; ABS, 2009). The Australian Human Rights Commission (2007) notes that a combination of unemployment, the receipt of welfare payments and a lower standard of education also predispose Indigenous women to an increased risk of poor health outcomes due to violence.

In Indigenous women in particular, social capital – including a connection with community, country and culture, is positively correlated with wellbeing (Brough et al., 2004; Biddle, 2012; Osborne et al., 2013). The relationship between social capital and mental wellbeing, particularly in Indigenous people, is well-established, however the correlation between social capital and physical wellbeing is now also acknowledged. For example, a number of Australian studies have demonstrated that Indigenous people who are connected to their community, country and culture are less likely to be diagnosed with a range of chronic health conditions including obesity, diabetes mellitus, hypertension and renal disease (Burgess et al., 2009; Campbell et al., 2011). Where there are declines in social capital, therefore, the mental and physical health of Indigenous women also decline.

Shepherd et al. (2012) report on the growing body of knowledge which suggests that Indigenous peoples’ social environment may significantly affect their mental health. Rates of mental illness among Indigenous women are high; indeed, Indigenous women are 2.6 times as likely as non-Indigenous women to report experiencing psychological distress and are also more likely to engage in self-harm and / or suicide (Australian Human Rights Commission, 2007; Burns et al. 2015, np). Mental illness is also strongly correlated with poverty; for example, Australian research suggests that people in poverty lack a sense of control over their lives and so experience higher levels of psychological stress (Australian Human Rights Commission, 2007). In addition to poor mental health, psychological stress can also lead to poor physical health outcomes – specifically, via negative effects on the immune and cardiovascular systems and metabolic function (Australian Human Rights Commission, 2007; Shepherd et al., 2012). Mental illness is not only underpinned by social health determinants, it is also problematic in terms of modifying the social factors which underpin poor health outcomes in Indigenous communities. For example, Marmot (2011) suggests that, in Indigenous communities, marginalisation results in disempowerment which in turn leads many Indigenous women to perceive little value in efforts to make health-related changes.

Social dysfunction and high rates of mental illness in Indigenous communities is driven by – and, indeed, drives – the high rate of substance abuse in these communities (Osborne et al., 2013). Indigenous women are twice as likely as non-Indigenous women to smoke on a daily basis, and three times as likely to smoke during pregnancy (Osborne et al., 2013; Passey et al., 2013). Approximately 50% of Indigenous people report consuming alcohol at least once per week, 28% report current regular use of illicit substances including cannabis and other drugs, and 15% engage in ‘risky’ behaviours related to substance use (ABS, 2006). Substance abuse is an important social determinant of health; the correlation between substance use and poor outcomes in terms of both physical and mental health in adults is well-established. Whilst the prevalence of Indigenous mothers who use alcohol and illicit substances is unknown, rates of fetal alcohol spectrum disorder and neonatal abstinence syndrome are high among Indigenous neonates (AIHW, 2015). Additionally, Indigenous mothers who abuse substances are at greater risk of losing custody of their children; because of the relationship between social capital and health in Indigenous communities, this can itself be perceived as a poor health outcome (Australian Human Rights Commission, 2007; Osborne et al., 2013).

As noted by the Australian Government Department of Health and Ageing (2013), poverty limits the access of many Indigenous people to health care services. This is particularly true in regional and remote communities – and approximately 46% of Indigenous women live in an area classified as ‘regional’ or ‘remote’ (ABS, 2010). Though many regional and remote Indigenous communities are supported by ‘fly-in fly-out’ health services, research suggests that fragmented services and discontinuity of care can contribute to poor health outcomes for Indigenous women (Bar-Zeev et al., 2012). Many communities have no health services at all, and to receive medical attention Indigenous women are often required to travel long distances to regional centres. Although the federal government subsidises the transport and accommodation expenses associated with such trips, general living costs borne by Indigenous women are often significant (Kildea et al., 2010). Additionally, the costs for those accompanying a woman are often not subsidised, so women may be required to travel without support (Kildea et al., 2010). These issues affect Indigenous mothers disproportionately; for example, in comparison to non-Indigenous women, Indigenous women tend to access antenatal care both less frequently and later in their pregnancy, and this is underpinned by lack of access to care (Osborne et al., 2013).

Further complicating these issues is the fact that the ‘risk-prevention’ paradigm evident in many medicalised health services is incompatible with the holistic perception of health held by many Indigenous women (Ireland et al., 2011). Additionally, historic protectionist and paternalist attitudes directed towards Indigenous people continue to pervade many medicalised health services in Australia. Durey and Thompson (2012) suggest that racism, both covert and overt, towards Indigenous women in Australian health services remains a significant problem; indeed, the Australian Human Rights Commission (2007) notes that systematic discrimination is a key factor underpinning the lack of opportunity for Indigenous Australians achieve a health status equitable to that of non-Indigenous Australians. These issues associated with ‘culturally-safe’ service provision often culminate in Indigenous mothers disengaging from medicalised health services. This is a significant problem considering a lack of antenatal and intrapartum care in particular, and health care in general, is fundamental to the high maternal morbidity and mortality rates in Indigenous communities (AIHW, 2014a).

This paper has provided a critical analysis of the many social determinants of health for Australia’s Aboriginal and Torres Strait Islander peoples – and, particularly, Indigenous mothers. It has demonstrated that social factors underpin the health of Indigenous mothers in both the physical and mental domains. It has also provided evidence for the complex relationship between health and social determinants in Indigenous mothers.

References

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Palliative care can vary significantly in its effectiveness according to condition, location, and type of patient (WHO, 2011; Gomes et al., 2013). This has long been recognised as an issue: Higginson et al. (2003) suggested that it has been difficult to prove the effectiveness of palliative care given the broad range of providers and the diverse nature of the clients. The World Health Organisation (WHO, 2011) has argued that palliative care has generally been unduly focused on the needs of cancer patients and is unsuited for the increase in older patients with diverse needs that are more common in many parts of the world. Part of this variation is the differences between the type of care required for various conditions and the fact that sometimes specialised care for a variety of conditions is required (Preston et al. 2014). There are also challenges posed to meeting patients’ wishes for palliative care through patient-centred care, and Gomes et al. (2013) suggest that the desire of most patients to die at home can stretch resources or result in palliative care provision not reaching the wishes of their clients. Likewise, the extent to which palliative care can be effectively provided through interaction with other care providers, and the role of family or informal carers is often unclear (Hanson et al., 2012). This has led to a range of views on the effective provision of palliative care. In this essay, first the challenges posed by an aging population and the challenge of providing specialist care to specific population groups will be considered. Second, the challenge of providing home-based palliative care will be discussed. Third, the challenges of developing effective communication between caregivers and the family will be evaluated. Fourth, ways in which informal caregivers may be involved in palliative care will be discussed. Finally, the arguments for earlier intervention in some cases will be evaluated.

The World Health Organisation argues that an important factor impacting upon the effectiveness of palliative care is the aging population in most countries that is coupled with a lack of attention to their complex needs (WHO, 2011). Older people more commonly experience multiple health problems, resulting in the need for such complex health needs to be more effectively supported (WHO, 2011). The model for palliative care traditionally focuses upon support for single diseases such as cancer, whereas people aged over 85 years are more likely to die from cardiovascular disease. There are also multiple debilitating diseases, such as dementia, osteoporosis and arthritis, and may require palliative care at any point in their illness trajectory (Gardiner et al., 2011). WHO (2011) indicate that palliative care does not usually form a part of traditional disease management, and with a combination of diseases the point at which palliative care is needed may become increasingly difficult to determine. The need for integration between different agencies is also cited as an important factor affecting older people (WHO, 2011). As such, palliative care for older adults must take into account the increasing variety of conditions that may develop, which is something that is not yet common amongst many care providers.

Solutions to these issues proposed by WHO (2011) include the need for palliative and primary care providers to receive more effective training in the needs of older people, and to gain a clearer understanding of the syndromes that affect this population group. This also includes a more effective understanding of the pharmacokinetics of opiates for pain management, and issues that are caused by comorbidity (Gardiner et al., 2011). Palliative physicians also need to improve their understanding of long-term care, including the administrative and clinical issues that are associated with older people dying in care homes. Likewise, inter-agency collaboration in palliative care is required to ensure that diverse needs are met through carers with different specialisms (Neilson et al., 2013). This means that palliative care needs to adopt a more personalised approach that takes into account the specific needs of clients, making collaborative approaches more common (Vitillo & Puchalski, 2014). As such, partnership working is likely to play an increasingly prominent role in palliative care provision in the future.

Similar concerns involving the specialised care for specific groups is identified by Vollenbroich et al. (2012), who investigate the potential for providing home care for children. These results suggested that where a specialised paediatric care team was used, there were high improvements in the children’s symptoms and quality of life. Additional benefits were seen as the reduction of the administrative barriers and improvement in aspects of communication between the care teams and the family. This supports arguments made by WHO (2011) which suggests greater specialisation is required to take into account the different diversities of patients who need palliative care. However, one aspect that is not identified by Vollenbroich et al. (2012) is the challenge posed by whether the condition should be considered as of greatest importance or whether the demographic considerations are needed (Gardiner et al., 2011). This suggests that perceptions of the age at death can significantly affect the patients’ needs in palliative care, and further research may be required to investigate the extent to which such suppositions are borne out in practice.

The place in which palliative care is provided is also a significant factor when considering how far the care meets the wishes of the patients. The extent to which people can opt for their place of death is an important factor affecting the effectiveness of palliative care. In the European Union, most people do not die at home (WHO, 2011). However, this is the preferred place of death for most people. In England, 58% of deaths occur in NHS hospitals, 18% at home, 4% in hospices, and 3% in other places. There is clearly an interest amongst many patients for dying at home. Jordhoy et al. (2010) report on an intervention programme staged by the University Hospital of Trondheim, Norway, which was intended to enable patients to spend more time at home and for them to die there should they prefer. This demonstrates that in order to achieve this end, close cooperation was necessary with the community health-care providers, and a multidisciplinary consultant team was needed to coordinate the care provision. This research demonstrated that intervention patients spent a smaller proportion of the last month of life in nursing homes than was possible for the control sample (Jordhoy et al. 2010). This illustrated that to increase the proportion of patients who were able to die at home, a significant investment of resources would be needed. This manifested itself in the need for greater levels of training in palliative care for community care staff, thus increasing the costs associated with the provision of care (Jordhoy et al. 2010).

Similar considerations were made by Gomes et al. (2013), who argue that providing palliative care at home increases the chances of dying at home, while reducing symptom burden that people experience as a part of an advanced illness. This also reduces the intensity of grief for family members if the patient dies (Gomes et al., 2013). However, Gomes et al. (2013) suggest that it is possible to provide home palliative care without significantly raising costs, but this is challenged by reports such as WHO (2011) who argue that for many patients, the complexity of the conditions experienced undermine the potential for home care to be effectively provided. Smith et al. (2014) suggest, however, that the context of increasing costs of healthcare means that the potential for palliative care to be provided in the home environment should be more closely investigated. In particular, this outlines that the quality of care can be significantly improved for home-based care, and in some cases the costs may be reduced by the fact that they may be spread between existing caregivers.

Communication between the patients and family members is often cited as an important factor leading to improved palliative care. Hannon et al. (2012) suggest that in contexts where family members are taken into account and given a role, family meetings can account for a significant improvement to the weekly workload for staff members. The study suggested that such meetings improved the particular areas of concern and worry for family members (Hannon et al., 2012). This demonstrates that such meetings can play an important role improving the experience of palliative care and indicate that one of the important roles of caregivers lies in the support that is given to the families of the patients as well as to the patients themselves (Hannon et al., 2014). However, although such meetings are considered appropriate and effective they may be undermined by the time constraints, the availability of appropriate staff, and the limitations of resources (Hannon et al., 2014). This may lead to less emphasis being placed on such aspects of palliative care, particularly where the benefit is not directed wholly towards the patient. Nevertheless, against this criticism is the extent to which such issues may result in the needs of the patient being better identified by consultation with family members (Gomes et al., 2013). It can be argued that this would represent an area of particular benefit to the provision of palliative care.

Harding et al. (2011) point out that informal caregivers are of significance in providing effective palliative care. Given the diversity of the care provided by this group, there is a need for a range of intervention strategies to provide appropriate support, depending on the needs of the patient. However, Harding et al. (2011) suggest that the range of models that are available to meet caregivers’ needs. Likewise, Harding et al. (2012) emphasise the significant costs to informal caregivers in terms of the emotional, physical and financial demands that informal caregiving places upon them. The conclusions of these studies indicate that support should be provided specifically to the caregiver and tailored closely to their needs, and the drawback of many existing approaches was the fact that interventions were not tailored to the caregivers’ needs. This is an important aspect for improving palliative care, as many patients prefer the services of informal caregiving, and this can also reduce the burden on professional healthcare if appropriate (Aslakson et al., 2014). The potential for providing support that is tailored to the needs of the informal caregivers would seem an important and effective means by which the quality of palliative care can be improved (Brandstatter et al., 2014).

Zimmerman et al. (2014) identify that there are limitations to the provision of palliative care in home settings that depend upon the condition of the patient. In their study, patients with advanced cancer tend to have a much lower quality of life that worsens as their condition progresses. This suggests that for some patients, palliative care should be provided at an earlier stage than is usually the case. However, such developments would depend upon the prognosis, and in such cases it is important to avoid premature judgment. Yoong et al. (2013) also suggest that early palliative care can prove beneficial in situations where patients have advanced lung cancer. This suggests that the benefits allow the palliative care teams to focus on fostering relationships with patients and their families, and improving illness understanding amongst patients and caregivers. The potential for adopting a comprehensive approach in this case provided psychosocial benefits, such as improving the coping mechanisms for patients alongside the management of medical treatment (Bajwah et al., 2012). The research thus indicates that the involvement of palliative care teams at an earlier stage in the treatment may be appropriate for some conditions and may provide significant benefits to the quality and effectiveness of care.

In conclusion, many of the arguments discussed suggest that there is an important case to be made for a greater diversity in approaches to palliative care. The need to take into account the diversity in the psychosocial needs of different population groups illustrate the importance of a more personalised approach to palliative care. Likewise, the challenge in meeting patients’ wishes to die at home requires significant attention as this can clearly provide significant benefits to patients. The research also indicates that greater engagement with family members can help support patients and prove of wider benefit to the carers. This also indicates that the involvement of informal caregivers is also a significant area of development, given the wide-ranging role they can play in the provision of palliative care. The introduction of palliative care at an earlier stage may allow benefits to the care process, particularly where the patient is cared for at home, as it helps foster an effective working relationship between different parties. Thus far, the key deficiencies of palliative care are largely that it appears to be focused on particular conditions and specific locations; the challenge is to broaden the type of patient that can be cared for, provide greater support to informal carers and family members, and be more responsive to the wishes of the patient.

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