Art & science | qualitative research
Grief and the experiences of nurses providing palliative care to children and young people at home Fiona Reid examines how exposure to vulnerable and grieving families can bring about challenges to objectivity and professional boundaries Correspondence [email protected] Fiona Reid is paediatric oncology nurse specialist, Raigmore Hospital, Inverness Date of submission February 15 2013 Date of acceptance June 12 2013 Peer review This article has been subject to open peer review and has been checked using antiplagiarism software Author guidelines ncyp.rcnpublishing.com
Abstract Aims To elicit the views of children’s nurses with regard to the personal, contextual and interprofessional challenges faced when delivering palliative and end of life care to children and young people in the community. Methods Semi-structured interviews were conducted with seven nurses who provided palliative care to one or more child or young person in the home. Data generated were analysed thematically to define topics. Findings Four themes emerged: service delivery, nurse-family relationships, nurses’ grief, funeral rites and bereavement support. Conclusions Nurses experienced considerable internal and external pressures. Some are inevitable but others, such as organisation of care provision to families and nurses’ personal coping, could be improved by adequately resourced workforces, integrated service structures and guidance on reflective practice. Further research is needed. Keywords Bereavement, community children’s nurses, child death, palliative care THE DEATH OF a child is highly emotive, with natural grief experienced by all concerned. Children’s community nursing (CCN) roles are ill-defined and involve autonomous practice across multiple care contexts. The nature of the family-nurse relationship means that nurses’ personal emotions may accompany those of the family. Increasingly sophisticated healthcare interventions, and lack of relative poverty,
NURSING CHILDREN AND YOUNG PEOPLE
malnutrition and infectious disease, mean that the death of a child or young person in Western society is a relatively rare event that can be viewed as an outrage that goes against the natural order of generational death (Maunder 2006). It could be argued that the home is one of the most testing places for nurses to work in, being recognised as a key locus for clients’ cultural identity, privacy and emotion (Owens and Randhawa 2004). In this environment, the nature of the nurse-family relationship, often at its closest during the intense and intimate periods of end of life care, means that the nurse’s emotions may parallel those of the family (Sourkes et al 2005). The nurse’s individual grief may be linked to self-orientated losses, such as of the prolonged and close therapeutic relationships with the entire family, and to challenges to personal beliefs (Liben et al 2008). These feelings may be exacerbated by difficult or multiple deaths, the irresolution of personal grief related to past child deaths or anticipation of future losses (McCloskey and Taggart 2010). The expansion of CCN teams, together with the publication of guidance for developing children’s palliative care services (Association for Children’s Palliative Care (ACT) 2009, Scottish Government 2012) mean that children, young people and/or their parents are increasingly opting for the family home to be their place of death. Pan-Scotland CCN posts have developed only over the past 15 years, with the extent of their roles being as yet indeterminate (McCloskey and Taggart 2010) but necessitating autonomous working across multiple health, social care and education environments. Poor interprofessional working between these care November 2013 | Volume 25 | Number 9 31
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Art & science | qualitative research contexts has the potential to compound the nurse’s personal grief through work-orientated losses that could result from unmet professional expectations and goals (Williams 2010).
Literature review Few studies can be found that relate to the emotional toll shouldered by children’s nurses providing palliative care in the community. Those articles that are available generally focus on acute rather than community settings (Papadatou et al 2002), and research may be limited by overzealous gatekeeping with regard to the vulnerability of families (Tomlinson et al 2007).
Aims This study aimed to elicit the lived experiences of children’s nurses delivering palliative and end of life care to children and young people in the community. It was anticipated that the information gained could offer a better understanding of the personal, contextual and interprofessional challenges faced by these nurses, and the consequent influences of these on their personal grief over the inevitable suffering and loss. It was hoped to identify changes to practice that could enhance the way nurses cope with the situation and improve service delivery to families. Specific goals were to generate: knowledge in a field of study where there was limited information; understanding of complex processes; illumination of a variety of meanings attached to particular issues; and further ideas and hypotheses (Thompson et al 2006). Methods The study was conducted in a rural part of Scotland. A flexible, qualitative design using grounded theory was selected. Registered children’s nurses meeting the criteria (Box 1) were approached through team leads to allow indirect but targeted sampling of staff who could contribute significant information about the focus of the study. Seven nurses (four CCNs and three children’s respite nurses (ResNs)) were invited to participate in a single face-to-face interview with the principal investigator. Core questions covered areas such as skills and resources, relationships, team working, coping mechanisms and changes to practice, with consent gained, and anonymity and confidentiality assured. Options for post-interview support were available for participants because, although the interview could have been cathartic, recall of the episode might have had emotional repercussions (Gerow et al 2010). The material was audiotaped, transcribed, anonymised and analysed using a coding, weighting 32 November 2013 | Volume 25 | Number 9
Box 1 Participant inclusion criteria ■■ Participant has delivered palliative care to a child or young person and their family in the community. ■■ The client was 0-19 years old. ■■ The participant is a registered nurse with the Nursing and Midwifery Council. ■■ The participant is employed through the NHS in the local health board. ■■ There has been at least one face to face contact with the dying child and the family together. ■■ Client died before the interview took place (grief and pressures escalating with disease trajectory). Exclusion criteria ■■ The candidate is employed privately, in social work, is a health visitor or a school nurse. and distillation approach (Burnard et al 2008) to generate relevant data and extrapolate main themes and subthemes. Ethical considerations Ethical approval was granted from NHS and university research ethics committees.
Findings Analysis of the interview results revealed four main themes: service delivery, nurse-family relationship, nurses’ grief and funeral rites/bereavement support. Service delivery One of the main challenges identified by all participants, especially when there was rapid turnover of staff, was initiating and sustaining plans of care across a range of contexts. Some family decisions, agreed with professionals in a healthcare environment, could not be honoured in non-health settings because of incongruent regulations and philosophies: ‘Parents had signed the Do Not Resuscitate plan... you go into education or social work… they have to be resuscitated… not what the family wanted… care environments have different rules’ (Participant 4). The participants reported frustrations resulting from disputes between different budget holders over responsibility for sourcing, financing and maintaining health equipment and supplies. The delivery of care to families was affected by the variability in the degree and quality of interprofessional working, with roles poorly defined and a limited availability of appropriately skilled nurses to whom these nurses could pass on responsibility. With no formal arrangements for 24-hour end of life care established, most CCNs delivered NURSING CHILDREN AND YOUNG PEOPLE
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the service on an impromptu, goodwill basis. Respondents described mixed feelings about the benefits of interagency care plan meetings that could have been led more effectively and often took place without suitable representation or clear objectives, and were of overwhelming magnitude for the family: ‘These child plans… try and encompass school, social work and respite… team is actually so huge’ (Participant 4). Nurse-family relationships Maintaining professional boundaries when trying to balance familiarity and emotional involvement with a level of detachment was challenging for nurses, with a high number describing a fine line between advising, advocacy, empowering and intervening: ‘You get sucked in to the family dynamic… found it quite difficult to remain neutral’ (Participant 1). There were reports of incidents where discomfort was associated with family friction and anger, and this was sometimes directed towards staff: ‘I don’t want to do marriage guidance… disharmony between mum and dad… I didn’t like that conflict’ (Participant 5). It was evident during the interviews that particular ethical dilemmas still caused distress to about three quarters of participants many years later. Examples of these were when parents and/ or professionals disagreed about continuation or introduction of intensive, life-prolonging interventions, or when the use of alternative medicines was not seen to be in the best interest of the child: ‘A battle between medical and parents... about keeping him alive at any cost... thank goodness that poor child is at peace’ (Participant 7). With information mainly filtered through the parents, few nurses felt they could establish opportunities for open discussion and truth-telling directly with the child or young person; they reported that on occasions they were expected to participate in levels of collusion: ‘They’re [parents] quite overprotective of these kids… don’t think we ever had him on his own to talk’ (Participant 7). Nurses’ grief Although participants appeared to be reconciled to child death, all still described strong feelings of fearful anticipation, emotional wrestling and cumulative effects, with comments related to societal attitudes: ‘Death is the most under-talked about subject… it was drummed into you… don’t cry… it continually happens… so hard to keep dealing with it’ (Participant 5). NURSING CHILDREN AND YOUNG PEOPLE
All the nurses identified peer support and reflective practice as coping tactics they used: ‘I like to reflect and figure things out… sometimes you did take it home with you … basically kind of think… oh God’ (Participant 2). However, many found disconnecting from intrusive thoughts outside work and turning this process into a positive endeavour difficult. Funeral rites and bereavement support The funeral appeared to offer a setting where most nurses could legitimately demonstrate personal grief. Nevertheless, the type of ritual was a major factor influencing the degree of personal closure achieved by over half of the nurses: ‘The funeral didn’t give any sense of farewell… my picture is still of a very distressed family, trying to stop the coffin going away’ (Participant 3). Several participants indicated some negative cumulative effects: ‘I remember all the other children… you see all the parents that you’ve known for years… you see the grief in them’ (Participant 5). Providing post-death bereavement support was considered to be part of the CCN’s role if requested by the family, although this was not always recognised by managers. Nurses acknowledged the mutual benefits for grief resolution, but virtually all were conscious of having to maintain a clear, professional and family-orientated stance meanwhile.
Discussion The complex nature of children’s palliative care is apparent from this study, where the nurses describe the need for comprehensive and consistent interaction between multiple agencies and for flexibility if adequate care is to be provided for rural populations. This requirement for a unified approach to individualised person-centred care is documented well, although the challenges of navigating through fragmented and bureaucratic systems are more often reported by parents than by professionals (Sourkes et al 2005). There is little definition of the roles of CCNs, who can be mistaken for district nurses (McCloskey and Taggart 2010). This is complicated further by the fact that CCN teams have evolved independently to meet local demographic needs. The multiplicity of their roles, however, is clear – with nurses needing to be eclectic, innovative and flexible in adapting to the attitudes, regulations and fiscal arrangements in the many care environments involved. Conflict between nurses’ expectations of their role and the stress caused by organisational pressures from the November 2013 | Volume 25 | Number 9 33
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Art & science | qualitative research Sensitive guidance of parents... can offer real opportunities for children and young people to participate in discussions... various structures in which they work is reiterated in this investigation. It is reasonable to propose that the closer and more frequent the CCN’s connection to the child or young person and the family, the more acutely these pressures will be felt (Oudshoorn et al 2007). Significant non-constructive elements to multi-agency meetings described in this study appear to contradict the values of this activity suggested by most models of interagency working, although Sloper (2004) does identify significant barriers to co-ordination. Nurses in this study were reporting on experiences that took place up to ten years previously, and improvements based on more recent policy drivers (Scottish Executive 2008, Stradling et al 2009) may have been achieved since. Integrated service planning at board level and a shared ethos of care across all agencies are essential to providing consistent high quality care and avoiding compartmentalisation of services to families. The incorporation of all individual family and professional perspectives in appropriate and well-managed meetings can create a sense of inclusion and identify clear, shared priorities and goals. With CCNs acting as key workers, often bypassing primary healthcare nurses in the early phases of a child’s disease, provision of a formal 24-hour service during end of life care is not easy. It would appear that, commonly, support for families was delivered on an ad hoc basis through the generosity of staff (Beringer et al 2007). Improved, flexible access to other experienced children’s nurses at times of intensive palliative care could be achieved through appointments to rotational acute/community nursing contracts, with empowerment of local adult-trained nursing teams to complement children’s nursing services. These arrangements should allow the practical and emotional responsibilities to be shared safely and confidently, so maintaining the physical and mental health of the nursing workforce, with continuity of care for the family in the event of a nurse’s absence. Witnessing the family’s oscillating physical and emotional suffering, flexibly empowering parents in response to need and advising impartially in a non-authoritarian manner, are all inherent in children’s nursing practice. The challenges 34 November 2013 | Volume 25 | Number 9
of balancing an appropriate level of personal involvement through creating an atmosphere of intimacy while curbing excessive engagement are not exclusive to, but are exaggerated in, children’s palliative care (Wakefield 2000) and were seen in this study. The intensity of these complex interpersonal relationships is a significant stressor for nurses (Williams 2010), where increased burdens of emotion management, loss of objectivity and prolonged nurse grief may be underestimated and warrant further investigation. The concept of ‘hope, denial and resistance’ has been associated with anticipatory grieving in family members, resulting in fluctuations of feelings. The behaviours associated with diverse parental coping mechanisms at this time are often related to the prolonged, unpredictable disease trajectories frequently seen in children (Liben et al 2008). Controversial parental choices and ethical quandaries resulting from this can cause distress to nurses, feelings of impotence in advocating on behalf of the child, forced crossing of personal moral thresholds and difficulties in distancing themselves from the situation (Harrington-Jacobs 2005). Parents are usually the primary recipients of information, and therefore take on an executive role in facilitating, constraining, diluting or delaying communication to their child. The discomfort experienced by nurses associated with perceived mutual collusion and over-protection, and discordance between parents and their children, was described by Dunlop in 2008. McTaggart (2008) commented that, in their attempts to shield children from discussions about death and dying, professionals and parents could essentially do the opposite. Sensitive guidance of parents by children’s nurses skilled in communication can offer real opportunities for children and young people to participate in discussions that convey and demystify their concerns, increase their feelings of control and reduce their sense of marginalisation or isolation. Regardless of context, the death of a child or young person intensified the feelings of responsibility, tension, emotional cost and anguish experienced by nurses in this study. The participants described the ways in which they felt they should behave in relation to such a death while maintaining a professional role in which a feature has been denial of exhibitions of grief. Such views are validated (Liben et al 2008) where the display of emotion is influenced by culture, society and institutions, often being viewed as a sign of weakness or in the UK as tantamount to failure. NURSING CHILDREN AND YOUNG PEOPLE
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The development of a reciprocal therapeutic relationship through emotional engagement with the family, that almost transcends that of a typical professional role, leads to inevitable professional grief, but enables individualised care (Gerow et al 2010). Alternatively, conscious suppression of emotions risks degrees of detachment and indifference that may be barriers to high-quality care. Maunder (2006) emphasised the considerable skills required by nurses to manage their private grief. Participants, as in other reports (Williams 2010), attempted to resolve their grief often in solitude, by searching for internal solutions to attribute positive perspectives and personal meaning to their work. With professional guidance, the benefits of reflective practice can be maximised to maintain staff welfare, particularly where cumulative deaths risk staff burnout (Gerow et al 2010). In this study, rituals – such as funerals – appeared to assist emotional coping, healing and sense of closure through acknowledging the reality of the child’s death and expressing grief. However, as Running et al (2008) corroborated, full therapeutic value was not always provided if the ceremony did not acknowledge society’s sentiments about child death, failed to address the depth of the nurses’ grief, was not personally meaningful or had no sense of specialness. The impact of multiple deaths resulted sometimes in cumulative distress for nurses, with each funeral evoking comparison with the best and worst past deaths, as noted by Gerow et al (2010). Nurses were professionally supporting and witnessing the grief of the family concerned and also other families who were already, or were soon going to be, bereaved. This appeared to constrain nurses from experiencing support themselves, further compounding their anguish. Although some children’s hospices hold internal policies on professional boundary management at funerals, their guidance is directed at the support to families. This additional effect on grief resolution for nurses appears to be a new finding, with strategies to overcome this not addressed in any literature. Whereas funerals are not primarily for the benefit of professionals, it could be argued that nurses have the same rights to expectations from the ritual as any other bereaved member of society. Participants implied the values of bereavement support for the family through maintaining therapeutic bonds and avoiding family feelings of abandonment due to the double loss of their child and of their ‘professional family’ NURSING CHILDREN AND YOUNG PEOPLE
(Sourkes et al 2005). Nurses may need to be advised to be reflective in analysing why and how they conduct bereavement support, to ensure the reason for continued input is not self-fulfilling. Newer recommendations describe the importance of this activity to families but also indicate the need to recognise effects on, and education and support for, nurses carrying out this role (Scottish Government 2010). Limitations Some of the findings identified here may be generalised. However, because all participants were local, female and trained in the UK, they are limited by the small size and homogeneous demography of the sample, and there is some limitation on transferability to children’s nursing teams working in urban areas. Furthermore, additional factors were not explored, for example in relation to diverse cultural attitudes and practices, because the CCNs and their clients were of similar ethnicity. The subjective nature of the topic may have biased the recruitment process in that those nurses who had experienced a greater emotional impact may have been more motivated to respond, and balance the reporting towards a negative account.
Conclusion It is clear from what literature is available and the findings from this research that the delivery of domiciliary palliative care to children and young people evokes highly subjective emotions in nurses that are unique to each episode of care. Exposure to vulnerable and grieving families in the privacy of their home can intensify the reciprocity of the nurse-family relationship, creating challenges in maintaining boundaries, objectivity and professionalism. Managing reactions between the parents’, the child’s or young person’s and the nurse’s own coping strategies requires considerable skill and reflection. Dissonance between the beliefs, values and expectations of clients and those of practitioners can result in moral and ethical conflict, raising barriers to communication and shared decision making. Incidents of inflexibility, organisational constraints and ineffective or untimely collaborative approaches were identified in this study, with nurses’ reports of increased physical and emotional fatigue associated with attempts to provide a comprehensive service. The capacity to meet agreed goals appears to be positively influential for all concerned, whereas non-accomplishment adds to the sense of impotence and of occupational stress for nurses. November 2013 | Volume 25 | Number 9 35
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Art & science | qualitative research Similarly, comparison of past and present end of life care experiences can be constructive for nurses in providing benchmarks for care but, equally, can become emotionally destructive if standards could not be maintained, particularly if this was out of the control of the individual practitioner. This emphasises the exclusivity of each event and the concept of nurses’ non-habituation to grief. Little literature exists about the effect on staff of attending children’s funerals, but the evidence provided in this study indicates a cumulative effect of revisitation of past child deaths which can be positive and negative. The significance of attempting to carry out a professional role in supporting families and other service users, while simultaneously attempting to achieve a level of personal grief resolution, is under-researched and merits further study. This study demonstrated that CCNs face internal and external challenges in the delivery of domiciliary palliative care to children, young people and their families. Some of these pressures are inevitable and unavoidable. Nurses need better training under clinical supervision, and better support through guidance in communication skills, reflective practice and interprofessional working, with shared ethos and structures across the various statutory and voluntary sectors. Nurses’ professionalism and coping would then be enhanced, ultimately reducing their sense of grief, while also improving quality of service provision and support for families placed in this unenviable position.
Implications for practice ■■ A degree of professional grief is inevitable and acceptable. ■■ Children’s community nursing (CCNs) posts need to be better understood by other healthcare professionals, to clarify role definitions and boundaries and appreciate pressures experienced. ■■ Integrated policies, philosophies and service provision between health, social care, education and the voluntary sector reduce the challenges for CCNs and families in implementing agreed care pathways consistently across multiple contexts. ■■ Multi-agency meetings need to be led well with clear and focused agendas and optimal representation. ■■ Twenty four-hour end of life care could be more flexibly resourced through the creation of pools of experienced children’s nurses employed through acute/community rotational posts. ■■ Guided reflective practice opportunities assist nurses in managing ethical dilemmas, professional boundaries, family behaviours and the effects of cumulative grief. ■■ The impact of multiple funeral attendances on CCNs and expectations of their roles at the ritual are poorly understood and warrant further research.
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Conflict of interest None declared
References Association for Children’s Palliative Care (2009) A Guide to the Development of Children’s Palliative Care Services. Third edition. ACT Publications, Bristol.
Maunder EZ (2006) Emotion work in the palliative care of children and young people. International Journal of Palliative Nursing. 12, 1, 27-33.
Papadatou D et al (2002) Greek nurse and physician grief as a result of caring for children dying of cancer. Pediatric Nursing. 28, 4, 345-355.
Sourkes B et al (2005) Food, toys and love: pediatric palliative care. Current Problems in Pediatric Adolescent Health Care. 35, 9, 350-386.
Beringer A et al (2007) Providing a children’s palliative care service in the community through fixed-term grants: the staff perspective. Child Care, Health and Development. 33, 5, 619-624.
McCloskey S, Taggart L (2010) How much compassion have I left? An exploration of occupational stress among children’s palliative care nurses. International Journal of Palliative Nursing. 16, 5, 233-240.
Running A et al (2008) Ritual: the final expression of care. International Journal of Nursing Practice. 14, A, 303-307.
Stradling B et al (2009) An Evaluation Report on the Development and Early Implementation Phases of Getting it Right for Every Child in Highland 2006-2009. Scottish Government, Edinburgh.
Burnard P et al (2008) Analysing and presenting qualitative data. British Dental Journal. 204, 8, 429-432.
McTaggart I (2008) Communication. In Kelsey J, McEwing G (Eds) Clinical Skills in Child Health Practice. Elsevier, Edinburgh.
Dunlop S (2008) The dying child: should we tell the truth? Paediatric Nursing. 20, 6, 28-31.
Oudshoorn A et al (2007) Client-nurse relationships in home-based palliative care: a critical analysis of power relations. Journal of Clinical Nursing. 16, 8, 1435-1443.
Gerow L et al (2010) Creating a curtain of protection: nurses’ experiences of grief following patient death. Journal of Nursing Scholarship. 42, 2, 122-129. Harrington-Jacobs H (2005) Ethics in pediatric end-of-life care: a nursing perspective. Journal of Pediatric Nursing. 20, 5, 360-336.
Owens A, Randhawa G (2004) ‘It’s different from my culture; they’re very different’: providing community-based palliative care for South Asian people in the UK. Health and Social Care in the Community. 12, 5, 414-421.
Liben S et al (2008) Paediatric palliative care: challenges and emerging ideas. Lancet. 371, 9615, 852-864.
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Scottish Executive (2008) Living and Dying Well – a National Action Plan for Palliative Care in Scotland. Scottish Executive, Edinburgh. Scottish Government (2010) Shaping Bereavement Care – Consultation on a Framework for Action for Bereavement Care in NHS Scotland. Scottish Government Health Directorate, Edinburgh. Scottish Government (2012) A Framework for the Delivery of Palliative Care for Children and Young People in Scotland. Scottish Government Health Directorate, Edinburgh. Sloper P (2004) Facilitators and barriers for co-ordinated multi-agency services. Child: Care, Health and Development. 30, 6, 571-580.
Thompson GN et al (2006) “Changing lanes”: facilitating the transition from curative to palliative care. Journal of Palliative Care. 22, 2, 91-100. Tomlinson D et al (2007) Challenges to participation in paediatric palliative care research: a review of the literature. Palliative Medicine. 21, 5, 435-440. Wakefield A (2000) Nurses’ responses to death and dying: a need for relentless self-care. International Journal of Palliative Nursing. 6, 5, 245-251. Williams J (2010) Pediatric death: a focus on health care providers. Archives of Pediatrics and Adolescent Medicine. 164, 4, 311-313.
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Grief and the experiences of nurses providing palliative care to children and young people at home Fiona Reid examines how exposure to vulnerable and grieving families can bring about challenges to objectivity and professional boundaries Correspondence [email protected] Fiona Reid is paediatric oncology nurse specialist, Raigmore Hospital, Inverness Date of submission February 15 2013 Date of acceptance June 12 2013 Peer review This article has been subject to open peer review and has been checked using antiplagiarism software Author guidelines ncyp.rcnpublishing.com
Abstract Aims To elicit the views of children’s nurses with regard to the personal, contextual and interprofessional challenges faced when delivering palliative and end of life care to children and young people in the community. Methods Semi-structured interviews were conducted with seven nurses who provided palliative care to one or more child or young person in the home. Data generated were analysed thematically to define topics. Findings Four themes emerged: service delivery, nurse-family relationships, nurses’ grief, funeral rites and bereavement support. Conclusions Nurses experienced considerable internal and external pressures. Some are inevitable but others, such as organisation of care provision to families and nurses’ personal coping, could be improved by adequately resourced workforces, integrated service structures and guidance on reflective practice. Further research is needed. Keywords Bereavement, community children’s nurses, child death, palliative care THE DEATH OF a child is highly emotive, with natural grief experienced by all concerned. Children’s community nursing (CCN) roles are ill-defined and involve autonomous practice across multiple care contexts. The nature of the family-nurse relationship means that nurses’ personal emotions may accompany those of the family. Increasingly sophisticated healthcare interventions, and lack of relative poverty,
NURSING CHILDREN AND YOUNG PEOPLE
malnutrition and infectious disease, mean that the death of a child or young person in Western society is a relatively rare event that can be viewed as an outrage that goes against the natural order of generational death (Maunder 2006). It could be argued that the home is one of the most testing places for nurses to work in, being recognised as a key locus for clients’ cultural identity, privacy and emotion (Owens and Randhawa 2004). In this environment, the nature of the nurse-family relationship, often at its closest during the intense and intimate periods of end of life care, means that the nurse’s emotions may parallel those of the family (Sourkes et al 2005). The nurse’s individual grief may be linked to self-orientated losses, such as of the prolonged and close therapeutic relationships with the entire family, and to challenges to personal beliefs (Liben et al 2008). These feelings may be exacerbated by difficult or multiple deaths, the irresolution of personal grief related to past child deaths or anticipation of future losses (McCloskey and Taggart 2010). The expansion of CCN teams, together with the publication of guidance for developing children’s palliative care services (Association for Children’s Palliative Care (ACT) 2009, Scottish Government 2012) mean that children, young people and/or their parents are increasingly opting for the family home to be their place of death. Pan-Scotland CCN posts have developed only over the past 15 years, with the extent of their roles being as yet indeterminate (McCloskey and Taggart 2010) but necessitating autonomous working across multiple health, social care and education environments. Poor interprofessional working between these care November 2013 | Volume 25 | Number 9 31
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Art & science | qualitative research contexts has the potential to compound the nurse’s personal grief through work-orientated losses that could result from unmet professional expectations and goals (Williams 2010).
Literature review Few studies can be found that relate to the emotional toll shouldered by children’s nurses providing palliative care in the community. Those articles that are available generally focus on acute rather than community settings (Papadatou et al 2002), and research may be limited by overzealous gatekeeping with regard to the vulnerability of families (Tomlinson et al 2007).
Aims This study aimed to elicit the lived experiences of children’s nurses delivering palliative and end of life care to children and young people in the community. It was anticipated that the information gained could offer a better understanding of the personal, contextual and interprofessional challenges faced by these nurses, and the consequent influences of these on their personal grief over the inevitable suffering and loss. It was hoped to identify changes to practice that could enhance the way nurses cope with the situation and improve service delivery to families. Specific goals were to generate: knowledge in a field of study where there was limited information; understanding of complex processes; illumination of a variety of meanings attached to particular issues; and further ideas and hypotheses (Thompson et al 2006). Methods The study was conducted in a rural part of Scotland. A flexible, qualitative design using grounded theory was selected. Registered children’s nurses meeting the criteria (Box 1) were approached through team leads to allow indirect but targeted sampling of staff who could contribute significant information about the focus of the study. Seven nurses (four CCNs and three children’s respite nurses (ResNs)) were invited to participate in a single face-to-face interview with the principal investigator. Core questions covered areas such as skills and resources, relationships, team working, coping mechanisms and changes to practice, with consent gained, and anonymity and confidentiality assured. Options for post-interview support were available for participants because, although the interview could have been cathartic, recall of the episode might have had emotional repercussions (Gerow et al 2010). The material was audiotaped, transcribed, anonymised and analysed using a coding, weighting 32 November 2013 | Volume 25 | Number 9
Box 1 Participant inclusion criteria ■■ Participant has delivered palliative care to a child or young person and their family in the community. ■■ The client was 0-19 years old. ■■ The participant is a registered nurse with the Nursing and Midwifery Council. ■■ The participant is employed through the NHS in the local health board. ■■ There has been at least one face to face contact with the dying child and the family together. ■■ Client died before the interview took place (grief and pressures escalating with disease trajectory). Exclusion criteria ■■ The candidate is employed privately, in social work, is a health visitor or a school nurse. and distillation approach (Burnard et al 2008) to generate relevant data and extrapolate main themes and subthemes. Ethical considerations Ethical approval was granted from NHS and university research ethics committees.
Findings Analysis of the interview results revealed four main themes: service delivery, nurse-family relationship, nurses’ grief and funeral rites/bereavement support. Service delivery One of the main challenges identified by all participants, especially when there was rapid turnover of staff, was initiating and sustaining plans of care across a range of contexts. Some family decisions, agreed with professionals in a healthcare environment, could not be honoured in non-health settings because of incongruent regulations and philosophies: ‘Parents had signed the Do Not Resuscitate plan... you go into education or social work… they have to be resuscitated… not what the family wanted… care environments have different rules’ (Participant 4). The participants reported frustrations resulting from disputes between different budget holders over responsibility for sourcing, financing and maintaining health equipment and supplies. The delivery of care to families was affected by the variability in the degree and quality of interprofessional working, with roles poorly defined and a limited availability of appropriately skilled nurses to whom these nurses could pass on responsibility. With no formal arrangements for 24-hour end of life care established, most CCNs delivered NURSING CHILDREN AND YOUNG PEOPLE
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the service on an impromptu, goodwill basis. Respondents described mixed feelings about the benefits of interagency care plan meetings that could have been led more effectively and often took place without suitable representation or clear objectives, and were of overwhelming magnitude for the family: ‘These child plans… try and encompass school, social work and respite… team is actually so huge’ (Participant 4). Nurse-family relationships Maintaining professional boundaries when trying to balance familiarity and emotional involvement with a level of detachment was challenging for nurses, with a high number describing a fine line between advising, advocacy, empowering and intervening: ‘You get sucked in to the family dynamic… found it quite difficult to remain neutral’ (Participant 1). There were reports of incidents where discomfort was associated with family friction and anger, and this was sometimes directed towards staff: ‘I don’t want to do marriage guidance… disharmony between mum and dad… I didn’t like that conflict’ (Participant 5). It was evident during the interviews that particular ethical dilemmas still caused distress to about three quarters of participants many years later. Examples of these were when parents and/ or professionals disagreed about continuation or introduction of intensive, life-prolonging interventions, or when the use of alternative medicines was not seen to be in the best interest of the child: ‘A battle between medical and parents... about keeping him alive at any cost... thank goodness that poor child is at peace’ (Participant 7). With information mainly filtered through the parents, few nurses felt they could establish opportunities for open discussion and truth-telling directly with the child or young person; they reported that on occasions they were expected to participate in levels of collusion: ‘They’re [parents] quite overprotective of these kids… don’t think we ever had him on his own to talk’ (Participant 7). Nurses’ grief Although participants appeared to be reconciled to child death, all still described strong feelings of fearful anticipation, emotional wrestling and cumulative effects, with comments related to societal attitudes: ‘Death is the most under-talked about subject… it was drummed into you… don’t cry… it continually happens… so hard to keep dealing with it’ (Participant 5). NURSING CHILDREN AND YOUNG PEOPLE
All the nurses identified peer support and reflective practice as coping tactics they used: ‘I like to reflect and figure things out… sometimes you did take it home with you … basically kind of think… oh God’ (Participant 2). However, many found disconnecting from intrusive thoughts outside work and turning this process into a positive endeavour difficult. Funeral rites and bereavement support The funeral appeared to offer a setting where most nurses could legitimately demonstrate personal grief. Nevertheless, the type of ritual was a major factor influencing the degree of personal closure achieved by over half of the nurses: ‘The funeral didn’t give any sense of farewell… my picture is still of a very distressed family, trying to stop the coffin going away’ (Participant 3). Several participants indicated some negative cumulative effects: ‘I remember all the other children… you see all the parents that you’ve known for years… you see the grief in them’ (Participant 5). Providing post-death bereavement support was considered to be part of the CCN’s role if requested by the family, although this was not always recognised by managers. Nurses acknowledged the mutual benefits for grief resolution, but virtually all were conscious of having to maintain a clear, professional and family-orientated stance meanwhile.
Discussion The complex nature of children’s palliative care is apparent from this study, where the nurses describe the need for comprehensive and consistent interaction between multiple agencies and for flexibility if adequate care is to be provided for rural populations. This requirement for a unified approach to individualised person-centred care is documented well, although the challenges of navigating through fragmented and bureaucratic systems are more often reported by parents than by professionals (Sourkes et al 2005). There is little definition of the roles of CCNs, who can be mistaken for district nurses (McCloskey and Taggart 2010). This is complicated further by the fact that CCN teams have evolved independently to meet local demographic needs. The multiplicity of their roles, however, is clear – with nurses needing to be eclectic, innovative and flexible in adapting to the attitudes, regulations and fiscal arrangements in the many care environments involved. Conflict between nurses’ expectations of their role and the stress caused by organisational pressures from the November 2013 | Volume 25 | Number 9 33
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Art & science | qualitative research Sensitive guidance of parents... can offer real opportunities for children and young people to participate in discussions... various structures in which they work is reiterated in this investigation. It is reasonable to propose that the closer and more frequent the CCN’s connection to the child or young person and the family, the more acutely these pressures will be felt (Oudshoorn et al 2007). Significant non-constructive elements to multi-agency meetings described in this study appear to contradict the values of this activity suggested by most models of interagency working, although Sloper (2004) does identify significant barriers to co-ordination. Nurses in this study were reporting on experiences that took place up to ten years previously, and improvements based on more recent policy drivers (Scottish Executive 2008, Stradling et al 2009) may have been achieved since. Integrated service planning at board level and a shared ethos of care across all agencies are essential to providing consistent high quality care and avoiding compartmentalisation of services to families. The incorporation of all individual family and professional perspectives in appropriate and well-managed meetings can create a sense of inclusion and identify clear, shared priorities and goals. With CCNs acting as key workers, often bypassing primary healthcare nurses in the early phases of a child’s disease, provision of a formal 24-hour service during end of life care is not easy. It would appear that, commonly, support for families was delivered on an ad hoc basis through the generosity of staff (Beringer et al 2007). Improved, flexible access to other experienced children’s nurses at times of intensive palliative care could be achieved through appointments to rotational acute/community nursing contracts, with empowerment of local adult-trained nursing teams to complement children’s nursing services. These arrangements should allow the practical and emotional responsibilities to be shared safely and confidently, so maintaining the physical and mental health of the nursing workforce, with continuity of care for the family in the event of a nurse’s absence. Witnessing the family’s oscillating physical and emotional suffering, flexibly empowering parents in response to need and advising impartially in a non-authoritarian manner, are all inherent in children’s nursing practice. The challenges 34 November 2013 | Volume 25 | Number 9
of balancing an appropriate level of personal involvement through creating an atmosphere of intimacy while curbing excessive engagement are not exclusive to, but are exaggerated in, children’s palliative care (Wakefield 2000) and were seen in this study. The intensity of these complex interpersonal relationships is a significant stressor for nurses (Williams 2010), where increased burdens of emotion management, loss of objectivity and prolonged nurse grief may be underestimated and warrant further investigation. The concept of ‘hope, denial and resistance’ has been associated with anticipatory grieving in family members, resulting in fluctuations of feelings. The behaviours associated with diverse parental coping mechanisms at this time are often related to the prolonged, unpredictable disease trajectories frequently seen in children (Liben et al 2008). Controversial parental choices and ethical quandaries resulting from this can cause distress to nurses, feelings of impotence in advocating on behalf of the child, forced crossing of personal moral thresholds and difficulties in distancing themselves from the situation (Harrington-Jacobs 2005). Parents are usually the primary recipients of information, and therefore take on an executive role in facilitating, constraining, diluting or delaying communication to their child. The discomfort experienced by nurses associated with perceived mutual collusion and over-protection, and discordance between parents and their children, was described by Dunlop in 2008. McTaggart (2008) commented that, in their attempts to shield children from discussions about death and dying, professionals and parents could essentially do the opposite. Sensitive guidance of parents by children’s nurses skilled in communication can offer real opportunities for children and young people to participate in discussions that convey and demystify their concerns, increase their feelings of control and reduce their sense of marginalisation or isolation. Regardless of context, the death of a child or young person intensified the feelings of responsibility, tension, emotional cost and anguish experienced by nurses in this study. The participants described the ways in which they felt they should behave in relation to such a death while maintaining a professional role in which a feature has been denial of exhibitions of grief. Such views are validated (Liben et al 2008) where the display of emotion is influenced by culture, society and institutions, often being viewed as a sign of weakness or in the UK as tantamount to failure. NURSING CHILDREN AND YOUNG PEOPLE
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The development of a reciprocal therapeutic relationship through emotional engagement with the family, that almost transcends that of a typical professional role, leads to inevitable professional grief, but enables individualised care (Gerow et al 2010). Alternatively, conscious suppression of emotions risks degrees of detachment and indifference that may be barriers to high-quality care. Maunder (2006) emphasised the considerable skills required by nurses to manage their private grief. Participants, as in other reports (Williams 2010), attempted to resolve their grief often in solitude, by searching for internal solutions to attribute positive perspectives and personal meaning to their work. With professional guidance, the benefits of reflective practice can be maximised to maintain staff welfare, particularly where cumulative deaths risk staff burnout (Gerow et al 2010). In this study, rituals – such as funerals – appeared to assist emotional coping, healing and sense of closure through acknowledging the reality of the child’s death and expressing grief. However, as Running et al (2008) corroborated, full therapeutic value was not always provided if the ceremony did not acknowledge society’s sentiments about child death, failed to address the depth of the nurses’ grief, was not personally meaningful or had no sense of specialness. The impact of multiple deaths resulted sometimes in cumulative distress for nurses, with each funeral evoking comparison with the best and worst past deaths, as noted by Gerow et al (2010). Nurses were professionally supporting and witnessing the grief of the family concerned and also other families who were already, or were soon going to be, bereaved. This appeared to constrain nurses from experiencing support themselves, further compounding their anguish. Although some children’s hospices hold internal policies on professional boundary management at funerals, their guidance is directed at the support to families. This additional effect on grief resolution for nurses appears to be a new finding, with strategies to overcome this not addressed in any literature. Whereas funerals are not primarily for the benefit of professionals, it could be argued that nurses have the same rights to expectations from the ritual as any other bereaved member of society. Participants implied the values of bereavement support for the family through maintaining therapeutic bonds and avoiding family feelings of abandonment due to the double loss of their child and of their ‘professional family’ NURSING CHILDREN AND YOUNG PEOPLE
(Sourkes et al 2005). Nurses may need to be advised to be reflective in analysing why and how they conduct bereavement support, to ensure the reason for continued input is not self-fulfilling. Newer recommendations describe the importance of this activity to families but also indicate the need to recognise effects on, and education and support for, nurses carrying out this role (Scottish Government 2010). Limitations Some of the findings identified here may be generalised. However, because all participants were local, female and trained in the UK, they are limited by the small size and homogeneous demography of the sample, and there is some limitation on transferability to children’s nursing teams working in urban areas. Furthermore, additional factors were not explored, for example in relation to diverse cultural attitudes and practices, because the CCNs and their clients were of similar ethnicity. The subjective nature of the topic may have biased the recruitment process in that those nurses who had experienced a greater emotional impact may have been more motivated to respond, and balance the reporting towards a negative account.
Conclusion It is clear from what literature is available and the findings from this research that the delivery of domiciliary palliative care to children and young people evokes highly subjective emotions in nurses that are unique to each episode of care. Exposure to vulnerable and grieving families in the privacy of their home can intensify the reciprocity of the nurse-family relationship, creating challenges in maintaining boundaries, objectivity and professionalism. Managing reactions between the parents’, the child’s or young person’s and the nurse’s own coping strategies requires considerable skill and reflection. Dissonance between the beliefs, values and expectations of clients and those of practitioners can result in moral and ethical conflict, raising barriers to communication and shared decision making. Incidents of inflexibility, organisational constraints and ineffective or untimely collaborative approaches were identified in this study, with nurses’ reports of increased physical and emotional fatigue associated with attempts to provide a comprehensive service. The capacity to meet agreed goals appears to be positively influential for all concerned, whereas non-accomplishment adds to the sense of impotence and of occupational stress for nurses. November 2013 | Volume 25 | Number 9 35
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Art & science | qualitative research Similarly, comparison of past and present end of life care experiences can be constructive for nurses in providing benchmarks for care but, equally, can become emotionally destructive if standards could not be maintained, particularly if this was out of the control of the individual practitioner. This emphasises the exclusivity of each event and the concept of nurses’ non-habituation to grief. Little literature exists about the effect on staff of attending children’s funerals, but the evidence provided in this study indicates a cumulative effect of revisitation of past child deaths which can be positive and negative. The significance of attempting to carry out a professional role in supporting families and other service users, while simultaneously attempting to achieve a level of personal grief resolution, is under-researched and merits further study. This study demonstrated that CCNs face internal and external challenges in the delivery of domiciliary palliative care to children, young people and their families. Some of these pressures are inevitable and unavoidable. Nurses need better training under clinical supervision, and better support through guidance in communication skills, reflective practice and interprofessional working, with shared ethos and structures across the various statutory and voluntary sectors. Nurses’ professionalism and coping would then be enhanced, ultimately reducing their sense of grief, while also improving quality of service provision and support for families placed in this unenviable position.
Implications for practice ■■ A degree of professional grief is inevitable and acceptable. ■■ Children’s community nursing (CCNs) posts need to be better understood by other healthcare professionals, to clarify role definitions and boundaries and appreciate pressures experienced. ■■ Integrated policies, philosophies and service provision between health, social care, education and the voluntary sector reduce the challenges for CCNs and families in implementing agreed care pathways consistently across multiple contexts. ■■ Multi-agency meetings need to be led well with clear and focused agendas and optimal representation. ■■ Twenty four-hour end of life care could be more flexibly resourced through the creation of pools of experienced children’s nurses employed through acute/community rotational posts. ■■ Guided reflective practice opportunities assist nurses in managing ethical dilemmas, professional boundaries, family behaviours and the effects of cumulative grief. ■■ The impact of multiple funeral attendances on CCNs and expectations of their roles at the ritual are poorly understood and warrant further research.
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Conflict of interest None declared
References Association for Children’s Palliative Care (2009) A Guide to the Development of Children’s Palliative Care Services. Third edition. ACT Publications, Bristol.
Maunder EZ (2006) Emotion work in the palliative care of children and young people. International Journal of Palliative Nursing. 12, 1, 27-33.
Papadatou D et al (2002) Greek nurse and physician grief as a result of caring for children dying of cancer. Pediatric Nursing. 28, 4, 345-355.
Sourkes B et al (2005) Food, toys and love: pediatric palliative care. Current Problems in Pediatric Adolescent Health Care. 35, 9, 350-386.
Beringer A et al (2007) Providing a children’s palliative care service in the community through fixed-term grants: the staff perspective. Child Care, Health and Development. 33, 5, 619-624.
McCloskey S, Taggart L (2010) How much compassion have I left? An exploration of occupational stress among children’s palliative care nurses. International Journal of Palliative Nursing. 16, 5, 233-240.
Running A et al (2008) Ritual: the final expression of care. International Journal of Nursing Practice. 14, A, 303-307.
Stradling B et al (2009) An Evaluation Report on the Development and Early Implementation Phases of Getting it Right for Every Child in Highland 2006-2009. Scottish Government, Edinburgh.
Burnard P et al (2008) Analysing and presenting qualitative data. British Dental Journal. 204, 8, 429-432.
McTaggart I (2008) Communication. In Kelsey J, McEwing G (Eds) Clinical Skills in Child Health Practice. Elsevier, Edinburgh.
Dunlop S (2008) The dying child: should we tell the truth? Paediatric Nursing. 20, 6, 28-31.
Oudshoorn A et al (2007) Client-nurse relationships in home-based palliative care: a critical analysis of power relations. Journal of Clinical Nursing. 16, 8, 1435-1443.
Gerow L et al (2010) Creating a curtain of protection: nurses’ experiences of grief following patient death. Journal of Nursing Scholarship. 42, 2, 122-129. Harrington-Jacobs H (2005) Ethics in pediatric end-of-life care: a nursing perspective. Journal of Pediatric Nursing. 20, 5, 360-336.
Owens A, Randhawa G (2004) ‘It’s different from my culture; they’re very different’: providing community-based palliative care for South Asian people in the UK. Health and Social Care in the Community. 12, 5, 414-421.
Liben S et al (2008) Paediatric palliative care: challenges and emerging ideas. Lancet. 371, 9615, 852-864.
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Scottish Executive (2008) Living and Dying Well – a National Action Plan for Palliative Care in Scotland. Scottish Executive, Edinburgh. Scottish Government (2010) Shaping Bereavement Care – Consultation on a Framework for Action for Bereavement Care in NHS Scotland. Scottish Government Health Directorate, Edinburgh. Scottish Government (2012) A Framework for the Delivery of Palliative Care for Children and Young People in Scotland. Scottish Government Health Directorate, Edinburgh. Sloper P (2004) Facilitators and barriers for co-ordinated multi-agency services. Child: Care, Health and Development. 30, 6, 571-580.
Thompson GN et al (2006) “Changing lanes”: facilitating the transition from curative to palliative care. Journal of Palliative Care. 22, 2, 91-100. Tomlinson D et al (2007) Challenges to participation in paediatric palliative care research: a review of the literature. Palliative Medicine. 21, 5, 435-440. Wakefield A (2000) Nurses’ responses to death and dying: a need for relentless self-care. International Journal of Palliative Nursing. 6, 5, 245-251. Williams J (2010) Pediatric death: a focus on health care providers. Archives of Pediatrics and Adolescent Medicine. 164, 4, 311-313.
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