Research
Lived experiences of adult community nurses delivering palliative care to children and young people in rural areas Fiona Cathryn Reid
© 2013 MA Healthcare Ltd
T
he death of a child or young person (CYP) is a relatively rare occurrence in the Western world, and so there is often a need to rationalise the highly emotional and subjective experiences of these events (Maunder, 2006). Nurses caring for a CYP at the end of their life may have exaggerated feelings of lack of competence, helplessness, and fear, and may undertake a personal search for spirituality (Papadatou et al, 2002). Palliative care for CYP is increasingly recognised as requiring specialist input (ACT, 2009). Simply transferring adult models of care does not take into account the differing and complex developmental, environmental, and psychological characteristics that inform each situation (Swinney et al, 2007). Nurses with considerable knowledge, skills, and experience in CYP palliative care are often few in number, with gaps between service development and educational provision (Price and McNeilly, 2006). This is important because feelings of inadequacy, emotional distancing, and burnout have been reported as being more prevalent among professionals who are insufficiently prepared, educated, or supported to carry out their role (Contro et al, 2004). Nurses have frequent, poignant, and intimate relationships with families during the delivery of end-of-life care (EoLC) for a CYP (Maunder, 2006). Many families will have received support from children’s health-care services until the later stages of palliation, at which point the intensive nursing input required in the home often cannot be provided by the widely dispersed CYP nursing teams. Adult community nurses are likely to be involved in providing just a few episodes of palliative care to this age group during their working lifetimes. This creates challenges in their experiential reflection of nursing dying CYP, their development of relevant knowledge and skills, their building of nurse–family relationships, and in the amount and type of support they require (Neilson et al, 2011).
International Journal of Palliative Nursing 2013, Vol 19, No 11
Abstract
The anticipated death of a child or young person is a relatively rare occurrence in the Western world. Many families receive support from children’s health-care services until the late stages of palliation, with adult community nurses being involved in just an occasional end-of-life care episode in the home during their entire career. This creates challenges in nurses’ experiential reflection, development of knowledge and skills, and building of nurse–family relationships. Individual semi-structured interviews were conducted with 10 adult community nurses from a rural part of Scotland to explore their experiences of providing palliative care to children. The material was analysed using a qualitative phenomenological thematic approach. Four key themes emerged: emotional preparedness, navigating the professional ‘road’, becoming part of the family, and it’s everybody’s business. Significant issues were highlighted in relation to nurses’ coping, with implications for practice. Recommendations are made for further research into rural contextual dilemmas. Key words: Children l Young people l Palliative care l Qualitative research l Community l Adult nurses
In the past, research relating to this specialised area of nursing has focused on children’s teams working in acute or community environments (Papadatou et al, 2002; Rashotte, 2005; McCloskey and Taggart, 2010) or on the strategic development of children’s palliative care services (Beringer et al, 2007; Bradford et al, 2012). Literature from Canada and Australia identified challenges in delivering care to adult populations in very rural contexts (Wilkes and Beale, 2001; Kenny et al, 2007; Pesut et al, 2012). However, there appears to be a dearth of material that acknowledges the practical, emotional, and spiritual experiences of adult-registered nurses called on to deliver EoLC to CYP in their homes.
Aim Through the narration of lived experiences, this research aimed to highlight some of the challenges perceived by rural adult community nurses when delivering palliative care to CYP
Fiona Cathryn Reid is Paediatric Oncology/ Haematology Nurse Specialist for NHS Highland, Scotland Email: [email protected]
541
ional Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 4, 2015. For personal use only. No other uses without permission. . All rights re
Research
Box 1.Themes and subthemes
●
Emotional burden
● Attitude
to child death
Becoming part of the family ●
Extended family members
●
Parental behaviours
●
Personal beliefs
● Talking
●
Self-efficacy
●
●
Knowledge and experience
It’s everybody’s business
●
Qualifications
●
Delivering a 24-hour service
●
Isolation and rurality
●
Community expectations
●
Personal support
●
Confidentiality and anonymity
Navigating the ‘professional road’ ●
Referral and discharge planning
● Timing
of introduction to family
●
Roles
●
Interfacing with children’s health-care structures
with children
Rewards
Ethical approval for the study was given by the North of Scotland NHS Research Ethics Committee, NHS Highland Research and Development, and the University of Dundee Ethics Committee. Informed consent was obtained from participants and confidentiality was assured.
Data collection
and their families in the home. It was hoped that some changes to practice might be identified that could enable these nurses to cope more confidently with these stressful and unique events, ultimately enhancing service delivery.
Methodology A qualitative phenomenological design was thought most appropriate to explore these individual, diverse, and subjective lived experiences. This method is valuable in leading to deeper understanding of a poorly understood area, particularly where complex, interactive feelings and practices are involved (Barbour, 2000).
Setting The study was set in an area covering 41% of the land mass of Scotland (approximately the size of Belgium), including around 35 inhabited islands. The population of this area is around 310 000 (5.9% of Scotland’s total), of which 40 000 are aged 0–15 years, giving a population density of around 8.7/km2 (UK average is 258.9/km2). There are less than 20 miles of dual carriageway, with families travelling 2–7 hours in a single journey to access the nearest children’s hospital.
Sample The managers of adult community nursing teams from one health-care provider in the region were requested to invite all of their nursing staff to participate in the study, allowing non-probabilistic recruitment. Six district nurses (DNs) and four adult community palliative care clinical nurse specialists (CNSs) took part. The nurses had been qualified for between 15 and 42 years (mean 29.5 years). Eight of the ten had community qualifications, four had palliative care qualifications, and just two (DNs 2 and 3) had children’s
542
Ethical considerations
Individual, digitally recorded interviews were conducted by the author. These were semistructured, with open-ended core questions providing a flexible agenda.
Data analysis Latent, inductive content analysis was used, whereby the transcribed and anonymised data was annotated to record participants’ audible cues, such as sighs, tears, or changes in tone, adding weight to the analytical process. Significant statements were extrapolated and meanings formulated through coding and cross-coding of the data generated. These were distilled into related and recurrent emerging topics, resulting in a thematic approach (Elo and Kyngäs, 2008).
Findings Four interrelated and overlapping themes emerged from the analysis, illustrating the complexity of delivering palliative care to CYP.
Emotional preparedness Most of the nurses described being under prepared to deal with the emotional impact of the death of a CYP. Rather than the younger participants or those with least experience, it appeared to be those without a child nursing qualification who struggled to reconcile themselves with the concept of child death. ‘… young people affect you mightily more than somebody who has lived a full life … it was just the unjustness of why somebody could be plucked away.’ (DN4) ‘I did find it hard going because she was younger … I kept thinking that a young girl should [not] have to go … it’s not fair, and I did struggle.’ (DN6)
© 2013 MA Healthcare Ltd
Emotional preparedness
nursing qualifications. Three reported on their involvement with two CYP and the remaining seven on the care of a single CYP each. The participants’ median distances from the district general hospital employing specialist children’s nurses was around 65 miles, illustrating the rurality of the practising locations.
International Journal of Palliative Nursing 2013, Vol 19, No 11
ional Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 4, 2015. For personal use only. No other uses without permission. . All rights re
Research
The nurses clearly, and sometimes tearfully, articulated the personal impact of the episode. ‘… whole emotional rollercoaster that the parents were on … you were riding that yourself ... [it was] emotionally wearying.’ (CNS4) ‘We were bewildered and emotionally upset … [It caused me to] question my faith ... is there really a God up there?’ (DN5) ‘You yourself are quite overwhelmed by it, it’s got a lot of impact, there was such a lump in my throat.’ (DN4) ‘… what do you say to a parent whose child is dying? It’s very difficult if you’re all choked up yourself.’ (CNS2)
None of the nurses reported any palliative care education being part of their pre-registration programmes, 16–39 years prior to the interview, or of any subsequent training. Perceptions of professional expertise and self-confidence clearly differed between those who were registered as children’s nurses and those who were not. ‘I felt I was floundering ... you’re flying by the seat of your pants ... the main hindering factor was the lack of knowledge.’ (CNS4) ‘... I think there is a gap in knowledge, it was a very steep learning curve.’ (DN4)
Navigating the ‘professional road’ Many of the nurses were clear in their comments relating to discharge planning, with over twothirds feeling it did not exist or that it occurred far too late, was too rapid, and was ill-planned.
© 2013 MA Healthcare Ltd
‘The meeting when one child was discharged from hospital was fine, but then to find that the helicopter had already landed ... it felt like ... it’s over to you, they’ve done all their high-falluting stuff, and you’re left high and dry.’ (DN2)
Over three-quarters of the DNs criticised their late introduction to the families, stressing the importance of gaining trust and respect from the family. Comprehending family dynamics was recognised as important to individually tailoring care for each CYP. ‘We could have been of more use earlier on … [instead of] coming in late in the day … paddling fast to build a relationship … at a critical stage.’ (DN3)
International Journal of Palliative Nursing 2013, Vol 19, No 11
All of the CYP had input from large numbers of teams and professionals from both the district general hospital and tertiary hospitals. Understanding this structure of children’s services created issues for the participants, with identifying colleagues and setting up communication pathways a challenge for the majority. ‘This chap belonged to everybody ... the diabetic department … oncology … rheumatology … the ownership was huge … I couldn’t get one direct answer … I had to get in touch with all these different people.’ (DN4)
❛Nurses with considerable knowledge, skills, and experience in children and young people’s palliative care are often few in number ...❜
The input of specialist children’s nurses and paediatricians appeared to confuse the nurses’ perceptions of their roles, boundaries, and responsibilities. As a local team, they would normally have orchestrated and coordinated the care for adult patients.
Becoming part of the family Over half of the participants found working in balance with the extended family, parents, and the CYP unusual. All described some challenges in maintaining professional boundaries, with some portraying themselves as a ‘pseudo-member’ of the family. ‘… a lot of relatives involved in the families … all looking to you for an answer … it is more stressful.’ (CNS1) ‘They were coming from diverse ends of the spectrum … both parents looked at it from a different perspective totally.’ (DN2)
The nurses all identified the importance of skilled and sensitive communication with the family. They reported feeling anxious that the CYP or their siblings might not be able to cope with the information and feeling neglectful in not always directing the conversation to the patient. ‘I felt maybe perhaps was I missing something in not trying to engage the actual child themselves…’ (CNS1)
Over a quarter of the participants acknowledged the apparent resilience of children. ‘They’ve got a hunger for knowledge … kids will ask that obvious question that nobody wants to answer … they know a lot more than we give them credit [for].’ (DN1)
The nurses with child nursing qualifications
543
ional Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 4, 2015. For personal use only. No other uses without permission. . All rights re
Research
appeared to demonstrate greater confidence in adapting their communication styles to the age and maturity of the CYP. ‘ … the child needs to be heard … unintentionally, a lot of practitioners address the carers.’ (DN3)
Despite these fears, all of the nurses felt it was rewarding to deliver this care at such a private, personal, and devastating time. ‘It was a very privileged place to be.’ (CNS4) ‘The absolute uniqueness of each individual … you don’t see it so clearly in adults.’ (DN4) ‘It was a positive experience, it was teamwork … I feel personally enriched by having dealt with the situation.’ (CNS4)
It’s everybody’s business Resources for providing 24-hour EoLC, with the ability to rest and relinquish practical and emotional responsibilities, were limited as very small local teams and caseloads were spread over wide geographical areas. ‘… feeling unable to give the support that you wanted … it went on and on and on … I felt, I don’t know if I can keep this momentum up …’ (CNS4) ‘… they [DNs] didn’t really have anybody else they could have drawn on … I could see these nurses getting really tired.’ (CNS2)
Working in tightly-knit rural communities often meant the nurses had prior relationships with families, with just under half being related to, friends with, or having children in the same school as the family concerned. They highlighted the risks of prejudging the family, potential breaches of confidentiality, lack of nursing anonymity, and the pressure of being a supportive pillar for the entire community. ‘It’s not just the one family that’s involved … my kids would come home from school telling me about [the ill child].’ (DN1) ‘Everybody knew what was going on … they’d see us going in and out … everybody knows everybody’s business.’ (DN6) ‘The whole village reverberated … every single person is affected by that young person.’ (DN4)
544
Both groups remarked on the restricted opportunities for face-to-face support from others as a consequence of these rural issues and the geographical isolation. ‘My other colleague lived near [place 50 miles away] … the only way we could do this was to talk on the phone … that’s difficult when someone’s crying.’ (CNS2)
Discussion Irrespective of context or the participants’ level of experience, the death of a CYP elicited feelings of grief, fear, and emotional conflict. Some of the nurses still appeared to be trying to come to terms with their emotions in relation to the child’s death at the interview. Attitudes to the event seemed to directly correlate with the supposed degree of unjustness of the death, the age of the child, whether EoLC was more protracted, and whether the nurse held a prior relationship with the family. These personal beliefs also appeared to be heavily influenced by whether the participant had a child nursing qualification. These findings of stress, suffering, and paying an emotional price were also reported by Rashotte (2005) and McCloskey and Taggart (2010), although the impact on nurses’ emotional well being, exaggerated though working in close and familiar communities, is under-recorded. Western society is generally unprepared for the death of a child (Maunder, 2006), with a lack of discussion around this topic in the UK and other countries. Mourning losses is a natural activity, and the needs of nurses are no different to those of the general population. Displays of emotions and attitudes to death are linked to background, experience, culture, faith, and socio-cultural standards (Papadatou et al, 2002; Liben et al, 2008). Institutional and vocational ‘norms’ may also demand that nurses behave in a manner commensurate with their role (Maunder, 2006), with exhibition of sentiment being perceived as a s i g n o f e m o t i o n a l o v e r- i n v o l v e m e n t . Reconciliation with the concept of child death may be enhanced through the use of comparative stories about several care episodes (Schreiner et al, 2009). This was not an option available to those adult nurses interviewed, who had only been involved in an occasional event. Team debriefing using storytelling with children’s nurses could encourage validation of subjective emotions, and should be supported with the use of reflective frameworks (Quinn and Bailey, 2011) in clinical supervision sessions. Despite being expert generalists who highlighted their ability to translate most practical skills,
© 2013 MA Healthcare Ltd
❛Adult community nurses are likely to be involved in providing just a few episodes of palliative care to this age group during their working lifetimes.❜
International Journal of Palliative Nursing 2013, Vol 19, No 11
ional Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 4, 2015. For personal use only. No other uses without permission. . All rights re
© 2013 MA Healthcare Ltd
Research
these nurses also reported a pressure to rapidly learn new skills, often using any knowledge gained retrospectively. This resulted in sentiments of power lessness and an increased onus on responsibility, accountability, and culpability. Education in palliative care is said to influence belief in personal skills, self-efficacy, and advocacy behaviours (Thacker, 2008). It seems that any sense of failure to deliver quality care adds to the impotence and occupational and moral distress for nurses, exacerbating their grief. Clinicians delivering EoLC to CYP need endorsement, guidance, and a level of expert knowledge to meet the unique needs of children and families, but many are ill-prepared for this type of role (Davies et al, 2008; Liben et al, 2008). The costs and practicalities of delivering children’s palliative care training to very rural nurses, who may only be involved in a single episode of care, are challenging and as-yet unresolved. However, the principles of palliative care are now mandatory to nurses’ core education (Nursing and Midwifery Council, 2010). The introduction of key issues specifically related to children into postgraduate adult palliative care programmes, and provision of substantial and sustained support from specialist children’s nurses, could enhance the skills of adult nurses participating in this type of care. CYP with complex health-care needs require input from large numbers of professionals from multiple agencies and care sites (Carter et al, 2007). In this study, understanding the organisational systems and interfacing with children’s services proved challenging for the participants. They described the centrality of their role, viewing themselves as normally being the pivotal figure in community EoLC. With their usual partners in adult health-care provision absent, they reported confusion in role, responsibilities, and boundaries, and in gaining information and support from those with greater expertise in children’s services. A clear, cohesive approach, with consistent implementation of care plans, is known to reduce both anxiety and feelings of abandonment for families and professionals alike (Sourkes et al, 2005; O’Leary et al, 2006; Quinn and Bailey, 2011). The nurses reported being introduced to the families in the late stages of the disease trajectory, often with poor communication. They had usually been bypassed during earlier periods of care as a result of the existence of children’s community nurses. These findings have been briefly reported in previous literature (Spencer and Battye, 2001; Bradford et al, 2012) and may in part reflect territorial attitudes from children’s teams. Participants also criticised incidences of
International Journal of Palliative Nursing 2013, Vol 19, No 11
untimely discharge planning from hospital. This affected the development of professional communication pathways and opportunities to build new skills. These issues are consistent with other rural studies (Neilson et al, 2011; Wilkes and Beale, 2001). This is disappointing because facilitating a seamless service has long been a goal for health service provision. With early engagement being a prerequisite for quality care (Gunther and Thomas, 2006), there are real opportunities for keyworker children’s nurses to facilitate local nurses to familiarise themselves and develop a rapport with particularly vulnerable families. This, in turn, would enable EoLC to be exclusively shaped for each CYP. In paediatrics the term ‘family-centred care’ encompasses the concept of the client being the patient and their family (MacKean et al, 2005), and inclusion of their wider social and welfare concerns. In the present study it appeared that using an engrained holistic approach with extended family members was more unusual for participants without a child nursing registration. Becoming so heavily involved with the family and incorporating the needs of each individual raised their levels of anxiety, especially with potentially discordant perspectives leading to increased strain in family relationships. Nurses need to be sensitive to the level of support and empowerment required by each family member at any one time. This is not limited to, but is amplified in, paediatric palliative care. Families can be tired, angry, and indecisive, particularly at the very late stages of palliative care, so that pressures created through managing this balancing act in the home setting may be underestimated. This merits further study. McCloskey and Taggart (2010) briefly commented on the risks for children’s nurses of exposure to family anticipatory grief behaviours. Inclusion of and interaction with the CYP and their siblings raised more anxieties for the participants without a child-nursing registration, even though they acknowledged that openness was preferable and that children were resilient. There is a professional mandate for veracity and communication with CYP and their families. Nurses with an understanding of the emotional, cognitive, and behavioural stages of development of CYP are in an ideal position to help them express their preferences, make sense of events, and feel more in control (Dunlop, 2008). The pressure to guide conversations sensitively and diplomatically, with awareness that statements cannot be retracted, may have led less-experienced nurses to avoid this essential communication. These findings may therefore reflect the levels of
❛Most of the nurses described being underprepared to deal with the emotional impact of the death of a child or young person.❜
545
ional Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 4, 2015. For personal use only. No other uses without permission. . All rights re
Research
546
knowledge, communication skills, and confidence required to deliver this type of care. Although distressing, taking part in this exclusive, intimate, and painful experience resulted in a sense of achievement for some of the nurses and in humbling gratification for the majority. These testimonies of being enriched by the creation of trusting relationships, emotional connectedness, and positive bonds with the child’s family at a time of extreme vulnerability are well substantiated (Papadatou et al, 2002; Maunder, 2006), although other studies have generally focused on observations in acute settings. The patient demography, geographically isolated locations, and inequitable cover from specialist children’s nurses created significant issues. These findings are supported by many other international rural studies (Beringer et al, 2007; Nelson et al, 2007; Neilson et al, 2011; Bradford et al, 2012), which also report issues in relation to compromised quality of care and an increased sense of isolation for nurses. Participants demonstrated exhausting personal accountability and a strong sense of ownership, going well beyond their contractual responsibility to ensure rural families’ needs were met. Pesut et al’s (2012) rural Canadian study into adult nursing reported similar findings, although it did not consider the emphasised pressures of caring for children. Participants questioned their preconceptions in an attempt to be non-judgemental, while simultaneously preserving lay and professional boundaries. The rural community culture of sharing and giving of opinions also resulted in a conflict of interests for these nurses. The challenges of maintaining confidentiality, anonymity, and a good reputation while interacting with the family and community ‘en bloc’ in both professional and personal situations is well documented when caring for dying adults (Wilkes and Beale, 2001; Kenny et al, 2007; Nelson et al, 2007). The rarity of child death appeared to exaggerate the complexity of this dual relationship and is underreported in the paediatric literature. Feeling burdened into being a pillar of support for the entire local populace, where more personal relationships are demanded, seemed to shape advocacy roles and expectations for care, with personal ramifications of the death through community bereavement felt for years to come. The nurses’ attempts to manage their personal grief beyond their natural social networks appeared to have been compromised by the sparse professional support available. These factors have been observed in adult nursing in other rural settings (Wilkes and Beale, 2001) and will be hightened by the additional complications
reported here. Denial of support mechanisms can result in nurses being disenfranchised. National investment in more sophisticated and readily available telemedicine, linking specialist teams directly to rural practices and the families at home, could help to increase the available support, improve communication, and enhance knowledge and confidence.
Limitations The participants were a homogeneous group, analogous in culture, ethnicity, and gender and all trained in the UK, and the families they cared for were all from similar backgrounds. Although this is in some senses a strength, it also poses limitations on the transferability of the results to other international rural contexts, where demographic diversity, health-care structures and priorities may differ.
Recommendations for practice Emotional stress in nurses should be recognised by managers and health-care commissioners, and debriefing and reflective practice should be made available. Key issues related to CYP palliative care should be introduced on adult palliative care training programmes. Children’s nurses should be identified as keyworkers to provide practical, educational, and psychological support to adult colleagues. More sophisticated and available telemedicine could link family homes and rural practices.
Further research Additional research is needed into the emotional impact of delivering care to CYP in the home as opposed to hospital settings. The complexity of the dual personal–professional relationship experienced by rural nurses when caring for dying CYP should be explored. Similar studies could investigate the impact of this type of care on GPs and allied health professionals.
Conclusion The dearth of international literature relating to the lived experiences of adult community nurses caring for dying CYP in their homes suggests that this is an underdeveloped field of research. It is evident that, regardless of their experience, the nurses were affected by the deaths of the children at both professional and personal levels, leaving a legacy of unforgettable memories. The nurses interviewed were highly experienced yet had minimal exposure to this type of care in their nursing careers. The data suggested that levels of self-efficacy were directly related to type of training, with a child-nursing registration appearing to be a positive influence in nurses coping
© 2013 MA Healthcare Ltd
❛Resources for providing 24-hour end-of-life care ... were limited as very small local teams and caseloads were spread over wide geographical areas.❜
International Journal of Palliative Nursing 2013, Vol 19, No 11
ional Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 4, 2015. For personal use only. No other uses without permission. . All rights re
Research
effectively with the unique pressures experienced. There is a need for early interprofessional working, collaboration, and role clarity, affording nurses the opportunity to build knowledge, skills, and relationships. Specialist children’s nurses should be expected and resourced, with the assistance of technology, to act as keyworkers for families. They should also provide direction, education, and support to adult community nurses involved in this type of care on an individual and timely basis. Ethical issues and dilemmas around rural health-care were highlighted that require more in-depth research, including into the views of other health professionals. The findings illustrate the need for health-care commissioners to comprehend these issues when planning recruitment, resources, educational opportunities, and staff support for this nursing group. The international rise in the profile of CYP palliative care, along with the publication of guidance frameworks (Scottish Government, 2012), should give families the confidence to opt for home as the place for quality EoLC for their CYP. With this change in focus from a hospital location it is likely that rural adult community nurses will be increasingly involved in this care. Protecting the wellbeing of this staff group will help to ensure the quality and efficacy of care, which may in turn significantly influence both family and professional bereavement. I● JPN Acknowledgments The author wishes to acknowledge Irene McTaggart (Senior Lecturer in Nursing, Professional Regulation, College Lead Interprofessional Learning, University of Dundee) for her academic supervision of the author’s MSc dissertation and for her support and encouragement in disseminating the findings.
© 2013 MA Healthcare Ltd
Declaration of interests This study had no external sources of funding. The authors have no conflicts of interest to declare. ACT (2009) A Guide to the Development of Children’s Palliative Care Services. Third edition. ACT publications, Bristol Barbour RS (2000) The role of qualitative research in broadening the ‘evidence base’ for clinical practice. J Eval Clin Pract 6(2): 155–63 Beringer AJ, Eaton NM, Jones GL (2007) Providing a children’s palliative care service in the community through fixed-term grants: the staff perspective. Child Care Health Dev 33(5): 619–24 Bradford N, Bensink M, Irving H et al (2012) Paediatric palliative care services in Queensland: an exploration of the barriers, gaps and plans for service development. Neo Paed Child Health Nurs 15(1): 2–7 Carter B, Cummings J, Cooper L (2007) An exploration of best practice in multi-agency working and the experiences of families of children with complex health needs. What works well and what needs to be done to improve practice for the future? J Clin Nurs 16(3): 527–39 Contro NA, Larson J, Scofield S, Sourkes B, Cohen HJ (2004) Hospital staff and family perspectives regarding quality of pediatric palliative care. Pediatrics 114(5):
International Journal of Palliative Nursing 2013, Vol 19, No 11
1248–52 Davies B, Sehring SA, Partridge JC et al (2008) Barriers to palliative care for children: perceptions of pediatric health care providers. Pediatrics 121(2): 282–8 Dunlop S (2008) The dying child: should we tell the truth? Paediatr Nurs 20(6): 28–31 Elo S, Kyngäs H (2008) The qualitative content analysis process. J Adv Nurs 62(1): 107–15 Gunther M, Thomas SP (2006) Nurses’ narratives of unforgettable patient care events. J Nurs Scholarsh 38(4): 370–6 Kenny A, Endacott R, Botti M, Watts R (2007) Emotional toil: psychosocial care in rural settings for patients with cancer. J Adv Nurs 60(6): 663–72 Liben S, Papadatou D, Wolfe J (2008) Paediatric palliative care: challenges and emerging ideas. Lancet 371(9615): 852–64 MacKean G, Thurston WE, Scott CM (2005) Bridging the divide between families and health professionals’ perspectives on family-centred care. Health Expect 8(1): 74–85 Maunder EZ (2006) Emotion work in the palliative nursing care of children and young people. Int J Palliat Nurs 12(1): 27–33 McCloskey S, Taggart L (2010) How much compassion have I left? An exploration of occupational stress among children’s palliative care nurses. Int J Palliat Nurs 16(5): 233–40 Neilson SJ, Kai J, Macarthur C, Greenfield SM (2011) Caring for children dying from cancer at home: a qualitative study of the experience of primary care practitioners. Fam Pract 28(5): 545–53 Nelson W, Pomerantz A, Howard K, Bushy A (2007) A proposed rural healthcare ethics agenda. J Med Ethics 33(3): 136–9 Nursing and Midwifery Council (2010) Standards for Pre-Registration Nursing Education. NMC, London O’Leary N, Flynn J, MacCallion A, Walsh E, McQuillan R (2006) Paediatric palliative care delivered by an adult palliative care service. Palliat Med 20(4): 433–7 Papadatou D, Bellali T, Papazoglou I, Petraki D (2002) Greek nurse and physician grief as a result of caring for children dying of cancer. Pediatr Nurs 28(4): 345–53 Pesut B, McLeod B, Hole R, Dalhuisen M (2012) Rural nursing and quality end-of-life care: palliative care ... palliative approach ... or somewhere in-between? Adv Nurs Sci 35(4): 288–304 Price J, McNeilly P (2006) Developing an educational programme in paediatric palliative care. Int J Palliat Nurs 12(11): 536–41 Quinn C, Bailey M (2011) Caring for children and families in the community: experiences of Irish palliative care clinical nurse specialists. Int J Palliat Nurs 17(11): 561–7 Rashotte J (2005) Dwelling with stories that haunt us: building a meaningful nursing practice. Nurs Inq 12(1): 34–42 Schreiner LS, Pimple C, Wolf Bordonaro GP (2009) Palliative care for children: preparing undergraduate nursing students. Nurs Educ 34(4): 162–5 Scottish Government (2012) A Framework for the Delivery of Palliative Care for Children and Young People in Scotland. Scottish Government, Edinburgh Sourkes B, Frankel L, Brown M et al (2005) Food, toys, and love: pediatric palliative care. Curr Probl Pediatr Adolesc Health Care 35(9): 350–86 Spencer L, Battye L (2001) Palliative care in the community for children with cancer in South East England. Eur J Oncol Nurs 5(3): 190–7 Swinney R, Yin L, Lee A, Rubin D, Anderson C (2007) The role of support staff in pediatric palliative care: their perceptions, training, and available resources. J Palliat Care 23(1): 44–50 Thacker K (2008) Nurses’ advocacy behaviours in end-oflife nursing care. Nurs Ethics 15(2): 174–85 Wilkes LM, Beale B (2001) Palliative care at home: stress for nurses in urban and rural New South Wales, Australia. Int J Nurs Pract 7(5): 306–13
❛Protecting the wellbeing of this staff group will help to ensure the quality and efficacy of care, which may in turn significantly influence both family and professional bereavement.❜
547
ional Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 4, 2015. For personal use only. No other uses without permission. . All rights re
Lived experiences of adult community nurses delivering palliative care to children and young people in rural areas Fiona Cathryn Reid
© 2013 MA Healthcare Ltd
T
he death of a child or young person (CYP) is a relatively rare occurrence in the Western world, and so there is often a need to rationalise the highly emotional and subjective experiences of these events (Maunder, 2006). Nurses caring for a CYP at the end of their life may have exaggerated feelings of lack of competence, helplessness, and fear, and may undertake a personal search for spirituality (Papadatou et al, 2002). Palliative care for CYP is increasingly recognised as requiring specialist input (ACT, 2009). Simply transferring adult models of care does not take into account the differing and complex developmental, environmental, and psychological characteristics that inform each situation (Swinney et al, 2007). Nurses with considerable knowledge, skills, and experience in CYP palliative care are often few in number, with gaps between service development and educational provision (Price and McNeilly, 2006). This is important because feelings of inadequacy, emotional distancing, and burnout have been reported as being more prevalent among professionals who are insufficiently prepared, educated, or supported to carry out their role (Contro et al, 2004). Nurses have frequent, poignant, and intimate relationships with families during the delivery of end-of-life care (EoLC) for a CYP (Maunder, 2006). Many families will have received support from children’s health-care services until the later stages of palliation, at which point the intensive nursing input required in the home often cannot be provided by the widely dispersed CYP nursing teams. Adult community nurses are likely to be involved in providing just a few episodes of palliative care to this age group during their working lifetimes. This creates challenges in their experiential reflection of nursing dying CYP, their development of relevant knowledge and skills, their building of nurse–family relationships, and in the amount and type of support they require (Neilson et al, 2011).
International Journal of Palliative Nursing 2013, Vol 19, No 11
Abstract
The anticipated death of a child or young person is a relatively rare occurrence in the Western world. Many families receive support from children’s health-care services until the late stages of palliation, with adult community nurses being involved in just an occasional end-of-life care episode in the home during their entire career. This creates challenges in nurses’ experiential reflection, development of knowledge and skills, and building of nurse–family relationships. Individual semi-structured interviews were conducted with 10 adult community nurses from a rural part of Scotland to explore their experiences of providing palliative care to children. The material was analysed using a qualitative phenomenological thematic approach. Four key themes emerged: emotional preparedness, navigating the professional ‘road’, becoming part of the family, and it’s everybody’s business. Significant issues were highlighted in relation to nurses’ coping, with implications for practice. Recommendations are made for further research into rural contextual dilemmas. Key words: Children l Young people l Palliative care l Qualitative research l Community l Adult nurses
In the past, research relating to this specialised area of nursing has focused on children’s teams working in acute or community environments (Papadatou et al, 2002; Rashotte, 2005; McCloskey and Taggart, 2010) or on the strategic development of children’s palliative care services (Beringer et al, 2007; Bradford et al, 2012). Literature from Canada and Australia identified challenges in delivering care to adult populations in very rural contexts (Wilkes and Beale, 2001; Kenny et al, 2007; Pesut et al, 2012). However, there appears to be a dearth of material that acknowledges the practical, emotional, and spiritual experiences of adult-registered nurses called on to deliver EoLC to CYP in their homes.
Aim Through the narration of lived experiences, this research aimed to highlight some of the challenges perceived by rural adult community nurses when delivering palliative care to CYP
Fiona Cathryn Reid is Paediatric Oncology/ Haematology Nurse Specialist for NHS Highland, Scotland Email: [email protected]
541
ional Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 4, 2015. For personal use only. No other uses without permission. . All rights re
Research
Box 1.Themes and subthemes
●
Emotional burden
● Attitude
to child death
Becoming part of the family ●
Extended family members
●
Parental behaviours
●
Personal beliefs
● Talking
●
Self-efficacy
●
●
Knowledge and experience
It’s everybody’s business
●
Qualifications
●
Delivering a 24-hour service
●
Isolation and rurality
●
Community expectations
●
Personal support
●
Confidentiality and anonymity
Navigating the ‘professional road’ ●
Referral and discharge planning
● Timing
of introduction to family
●
Roles
●
Interfacing with children’s health-care structures
with children
Rewards
Ethical approval for the study was given by the North of Scotland NHS Research Ethics Committee, NHS Highland Research and Development, and the University of Dundee Ethics Committee. Informed consent was obtained from participants and confidentiality was assured.
Data collection
and their families in the home. It was hoped that some changes to practice might be identified that could enable these nurses to cope more confidently with these stressful and unique events, ultimately enhancing service delivery.
Methodology A qualitative phenomenological design was thought most appropriate to explore these individual, diverse, and subjective lived experiences. This method is valuable in leading to deeper understanding of a poorly understood area, particularly where complex, interactive feelings and practices are involved (Barbour, 2000).
Setting The study was set in an area covering 41% of the land mass of Scotland (approximately the size of Belgium), including around 35 inhabited islands. The population of this area is around 310 000 (5.9% of Scotland’s total), of which 40 000 are aged 0–15 years, giving a population density of around 8.7/km2 (UK average is 258.9/km2). There are less than 20 miles of dual carriageway, with families travelling 2–7 hours in a single journey to access the nearest children’s hospital.
Sample The managers of adult community nursing teams from one health-care provider in the region were requested to invite all of their nursing staff to participate in the study, allowing non-probabilistic recruitment. Six district nurses (DNs) and four adult community palliative care clinical nurse specialists (CNSs) took part. The nurses had been qualified for between 15 and 42 years (mean 29.5 years). Eight of the ten had community qualifications, four had palliative care qualifications, and just two (DNs 2 and 3) had children’s
542
Ethical considerations
Individual, digitally recorded interviews were conducted by the author. These were semistructured, with open-ended core questions providing a flexible agenda.
Data analysis Latent, inductive content analysis was used, whereby the transcribed and anonymised data was annotated to record participants’ audible cues, such as sighs, tears, or changes in tone, adding weight to the analytical process. Significant statements were extrapolated and meanings formulated through coding and cross-coding of the data generated. These were distilled into related and recurrent emerging topics, resulting in a thematic approach (Elo and Kyngäs, 2008).
Findings Four interrelated and overlapping themes emerged from the analysis, illustrating the complexity of delivering palliative care to CYP.
Emotional preparedness Most of the nurses described being under prepared to deal with the emotional impact of the death of a CYP. Rather than the younger participants or those with least experience, it appeared to be those without a child nursing qualification who struggled to reconcile themselves with the concept of child death. ‘… young people affect you mightily more than somebody who has lived a full life … it was just the unjustness of why somebody could be plucked away.’ (DN4) ‘I did find it hard going because she was younger … I kept thinking that a young girl should [not] have to go … it’s not fair, and I did struggle.’ (DN6)
© 2013 MA Healthcare Ltd
Emotional preparedness
nursing qualifications. Three reported on their involvement with two CYP and the remaining seven on the care of a single CYP each. The participants’ median distances from the district general hospital employing specialist children’s nurses was around 65 miles, illustrating the rurality of the practising locations.
International Journal of Palliative Nursing 2013, Vol 19, No 11
ional Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 4, 2015. For personal use only. No other uses without permission. . All rights re
Research
The nurses clearly, and sometimes tearfully, articulated the personal impact of the episode. ‘… whole emotional rollercoaster that the parents were on … you were riding that yourself ... [it was] emotionally wearying.’ (CNS4) ‘We were bewildered and emotionally upset … [It caused me to] question my faith ... is there really a God up there?’ (DN5) ‘You yourself are quite overwhelmed by it, it’s got a lot of impact, there was such a lump in my throat.’ (DN4) ‘… what do you say to a parent whose child is dying? It’s very difficult if you’re all choked up yourself.’ (CNS2)
None of the nurses reported any palliative care education being part of their pre-registration programmes, 16–39 years prior to the interview, or of any subsequent training. Perceptions of professional expertise and self-confidence clearly differed between those who were registered as children’s nurses and those who were not. ‘I felt I was floundering ... you’re flying by the seat of your pants ... the main hindering factor was the lack of knowledge.’ (CNS4) ‘... I think there is a gap in knowledge, it was a very steep learning curve.’ (DN4)
Navigating the ‘professional road’ Many of the nurses were clear in their comments relating to discharge planning, with over twothirds feeling it did not exist or that it occurred far too late, was too rapid, and was ill-planned.
© 2013 MA Healthcare Ltd
‘The meeting when one child was discharged from hospital was fine, but then to find that the helicopter had already landed ... it felt like ... it’s over to you, they’ve done all their high-falluting stuff, and you’re left high and dry.’ (DN2)
Over three-quarters of the DNs criticised their late introduction to the families, stressing the importance of gaining trust and respect from the family. Comprehending family dynamics was recognised as important to individually tailoring care for each CYP. ‘We could have been of more use earlier on … [instead of] coming in late in the day … paddling fast to build a relationship … at a critical stage.’ (DN3)
International Journal of Palliative Nursing 2013, Vol 19, No 11
All of the CYP had input from large numbers of teams and professionals from both the district general hospital and tertiary hospitals. Understanding this structure of children’s services created issues for the participants, with identifying colleagues and setting up communication pathways a challenge for the majority. ‘This chap belonged to everybody ... the diabetic department … oncology … rheumatology … the ownership was huge … I couldn’t get one direct answer … I had to get in touch with all these different people.’ (DN4)
❛Nurses with considerable knowledge, skills, and experience in children and young people’s palliative care are often few in number ...❜
The input of specialist children’s nurses and paediatricians appeared to confuse the nurses’ perceptions of their roles, boundaries, and responsibilities. As a local team, they would normally have orchestrated and coordinated the care for adult patients.
Becoming part of the family Over half of the participants found working in balance with the extended family, parents, and the CYP unusual. All described some challenges in maintaining professional boundaries, with some portraying themselves as a ‘pseudo-member’ of the family. ‘… a lot of relatives involved in the families … all looking to you for an answer … it is more stressful.’ (CNS1) ‘They were coming from diverse ends of the spectrum … both parents looked at it from a different perspective totally.’ (DN2)
The nurses all identified the importance of skilled and sensitive communication with the family. They reported feeling anxious that the CYP or their siblings might not be able to cope with the information and feeling neglectful in not always directing the conversation to the patient. ‘I felt maybe perhaps was I missing something in not trying to engage the actual child themselves…’ (CNS1)
Over a quarter of the participants acknowledged the apparent resilience of children. ‘They’ve got a hunger for knowledge … kids will ask that obvious question that nobody wants to answer … they know a lot more than we give them credit [for].’ (DN1)
The nurses with child nursing qualifications
543
ional Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 4, 2015. For personal use only. No other uses without permission. . All rights re
Research
appeared to demonstrate greater confidence in adapting their communication styles to the age and maturity of the CYP. ‘ … the child needs to be heard … unintentionally, a lot of practitioners address the carers.’ (DN3)
Despite these fears, all of the nurses felt it was rewarding to deliver this care at such a private, personal, and devastating time. ‘It was a very privileged place to be.’ (CNS4) ‘The absolute uniqueness of each individual … you don’t see it so clearly in adults.’ (DN4) ‘It was a positive experience, it was teamwork … I feel personally enriched by having dealt with the situation.’ (CNS4)
It’s everybody’s business Resources for providing 24-hour EoLC, with the ability to rest and relinquish practical and emotional responsibilities, were limited as very small local teams and caseloads were spread over wide geographical areas. ‘… feeling unable to give the support that you wanted … it went on and on and on … I felt, I don’t know if I can keep this momentum up …’ (CNS4) ‘… they [DNs] didn’t really have anybody else they could have drawn on … I could see these nurses getting really tired.’ (CNS2)
Working in tightly-knit rural communities often meant the nurses had prior relationships with families, with just under half being related to, friends with, or having children in the same school as the family concerned. They highlighted the risks of prejudging the family, potential breaches of confidentiality, lack of nursing anonymity, and the pressure of being a supportive pillar for the entire community. ‘It’s not just the one family that’s involved … my kids would come home from school telling me about [the ill child].’ (DN1) ‘Everybody knew what was going on … they’d see us going in and out … everybody knows everybody’s business.’ (DN6) ‘The whole village reverberated … every single person is affected by that young person.’ (DN4)
544
Both groups remarked on the restricted opportunities for face-to-face support from others as a consequence of these rural issues and the geographical isolation. ‘My other colleague lived near [place 50 miles away] … the only way we could do this was to talk on the phone … that’s difficult when someone’s crying.’ (CNS2)
Discussion Irrespective of context or the participants’ level of experience, the death of a CYP elicited feelings of grief, fear, and emotional conflict. Some of the nurses still appeared to be trying to come to terms with their emotions in relation to the child’s death at the interview. Attitudes to the event seemed to directly correlate with the supposed degree of unjustness of the death, the age of the child, whether EoLC was more protracted, and whether the nurse held a prior relationship with the family. These personal beliefs also appeared to be heavily influenced by whether the participant had a child nursing qualification. These findings of stress, suffering, and paying an emotional price were also reported by Rashotte (2005) and McCloskey and Taggart (2010), although the impact on nurses’ emotional well being, exaggerated though working in close and familiar communities, is under-recorded. Western society is generally unprepared for the death of a child (Maunder, 2006), with a lack of discussion around this topic in the UK and other countries. Mourning losses is a natural activity, and the needs of nurses are no different to those of the general population. Displays of emotions and attitudes to death are linked to background, experience, culture, faith, and socio-cultural standards (Papadatou et al, 2002; Liben et al, 2008). Institutional and vocational ‘norms’ may also demand that nurses behave in a manner commensurate with their role (Maunder, 2006), with exhibition of sentiment being perceived as a s i g n o f e m o t i o n a l o v e r- i n v o l v e m e n t . Reconciliation with the concept of child death may be enhanced through the use of comparative stories about several care episodes (Schreiner et al, 2009). This was not an option available to those adult nurses interviewed, who had only been involved in an occasional event. Team debriefing using storytelling with children’s nurses could encourage validation of subjective emotions, and should be supported with the use of reflective frameworks (Quinn and Bailey, 2011) in clinical supervision sessions. Despite being expert generalists who highlighted their ability to translate most practical skills,
© 2013 MA Healthcare Ltd
❛Adult community nurses are likely to be involved in providing just a few episodes of palliative care to this age group during their working lifetimes.❜
International Journal of Palliative Nursing 2013, Vol 19, No 11
ional Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 4, 2015. For personal use only. No other uses without permission. . All rights re
© 2013 MA Healthcare Ltd
Research
these nurses also reported a pressure to rapidly learn new skills, often using any knowledge gained retrospectively. This resulted in sentiments of power lessness and an increased onus on responsibility, accountability, and culpability. Education in palliative care is said to influence belief in personal skills, self-efficacy, and advocacy behaviours (Thacker, 2008). It seems that any sense of failure to deliver quality care adds to the impotence and occupational and moral distress for nurses, exacerbating their grief. Clinicians delivering EoLC to CYP need endorsement, guidance, and a level of expert knowledge to meet the unique needs of children and families, but many are ill-prepared for this type of role (Davies et al, 2008; Liben et al, 2008). The costs and practicalities of delivering children’s palliative care training to very rural nurses, who may only be involved in a single episode of care, are challenging and as-yet unresolved. However, the principles of palliative care are now mandatory to nurses’ core education (Nursing and Midwifery Council, 2010). The introduction of key issues specifically related to children into postgraduate adult palliative care programmes, and provision of substantial and sustained support from specialist children’s nurses, could enhance the skills of adult nurses participating in this type of care. CYP with complex health-care needs require input from large numbers of professionals from multiple agencies and care sites (Carter et al, 2007). In this study, understanding the organisational systems and interfacing with children’s services proved challenging for the participants. They described the centrality of their role, viewing themselves as normally being the pivotal figure in community EoLC. With their usual partners in adult health-care provision absent, they reported confusion in role, responsibilities, and boundaries, and in gaining information and support from those with greater expertise in children’s services. A clear, cohesive approach, with consistent implementation of care plans, is known to reduce both anxiety and feelings of abandonment for families and professionals alike (Sourkes et al, 2005; O’Leary et al, 2006; Quinn and Bailey, 2011). The nurses reported being introduced to the families in the late stages of the disease trajectory, often with poor communication. They had usually been bypassed during earlier periods of care as a result of the existence of children’s community nurses. These findings have been briefly reported in previous literature (Spencer and Battye, 2001; Bradford et al, 2012) and may in part reflect territorial attitudes from children’s teams. Participants also criticised incidences of
International Journal of Palliative Nursing 2013, Vol 19, No 11
untimely discharge planning from hospital. This affected the development of professional communication pathways and opportunities to build new skills. These issues are consistent with other rural studies (Neilson et al, 2011; Wilkes and Beale, 2001). This is disappointing because facilitating a seamless service has long been a goal for health service provision. With early engagement being a prerequisite for quality care (Gunther and Thomas, 2006), there are real opportunities for keyworker children’s nurses to facilitate local nurses to familiarise themselves and develop a rapport with particularly vulnerable families. This, in turn, would enable EoLC to be exclusively shaped for each CYP. In paediatrics the term ‘family-centred care’ encompasses the concept of the client being the patient and their family (MacKean et al, 2005), and inclusion of their wider social and welfare concerns. In the present study it appeared that using an engrained holistic approach with extended family members was more unusual for participants without a child nursing registration. Becoming so heavily involved with the family and incorporating the needs of each individual raised their levels of anxiety, especially with potentially discordant perspectives leading to increased strain in family relationships. Nurses need to be sensitive to the level of support and empowerment required by each family member at any one time. This is not limited to, but is amplified in, paediatric palliative care. Families can be tired, angry, and indecisive, particularly at the very late stages of palliative care, so that pressures created through managing this balancing act in the home setting may be underestimated. This merits further study. McCloskey and Taggart (2010) briefly commented on the risks for children’s nurses of exposure to family anticipatory grief behaviours. Inclusion of and interaction with the CYP and their siblings raised more anxieties for the participants without a child-nursing registration, even though they acknowledged that openness was preferable and that children were resilient. There is a professional mandate for veracity and communication with CYP and their families. Nurses with an understanding of the emotional, cognitive, and behavioural stages of development of CYP are in an ideal position to help them express their preferences, make sense of events, and feel more in control (Dunlop, 2008). The pressure to guide conversations sensitively and diplomatically, with awareness that statements cannot be retracted, may have led less-experienced nurses to avoid this essential communication. These findings may therefore reflect the levels of
❛Most of the nurses described being underprepared to deal with the emotional impact of the death of a child or young person.❜
545
ional Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 4, 2015. For personal use only. No other uses without permission. . All rights re
Research
546
knowledge, communication skills, and confidence required to deliver this type of care. Although distressing, taking part in this exclusive, intimate, and painful experience resulted in a sense of achievement for some of the nurses and in humbling gratification for the majority. These testimonies of being enriched by the creation of trusting relationships, emotional connectedness, and positive bonds with the child’s family at a time of extreme vulnerability are well substantiated (Papadatou et al, 2002; Maunder, 2006), although other studies have generally focused on observations in acute settings. The patient demography, geographically isolated locations, and inequitable cover from specialist children’s nurses created significant issues. These findings are supported by many other international rural studies (Beringer et al, 2007; Nelson et al, 2007; Neilson et al, 2011; Bradford et al, 2012), which also report issues in relation to compromised quality of care and an increased sense of isolation for nurses. Participants demonstrated exhausting personal accountability and a strong sense of ownership, going well beyond their contractual responsibility to ensure rural families’ needs were met. Pesut et al’s (2012) rural Canadian study into adult nursing reported similar findings, although it did not consider the emphasised pressures of caring for children. Participants questioned their preconceptions in an attempt to be non-judgemental, while simultaneously preserving lay and professional boundaries. The rural community culture of sharing and giving of opinions also resulted in a conflict of interests for these nurses. The challenges of maintaining confidentiality, anonymity, and a good reputation while interacting with the family and community ‘en bloc’ in both professional and personal situations is well documented when caring for dying adults (Wilkes and Beale, 2001; Kenny et al, 2007; Nelson et al, 2007). The rarity of child death appeared to exaggerate the complexity of this dual relationship and is underreported in the paediatric literature. Feeling burdened into being a pillar of support for the entire local populace, where more personal relationships are demanded, seemed to shape advocacy roles and expectations for care, with personal ramifications of the death through community bereavement felt for years to come. The nurses’ attempts to manage their personal grief beyond their natural social networks appeared to have been compromised by the sparse professional support available. These factors have been observed in adult nursing in other rural settings (Wilkes and Beale, 2001) and will be hightened by the additional complications
reported here. Denial of support mechanisms can result in nurses being disenfranchised. National investment in more sophisticated and readily available telemedicine, linking specialist teams directly to rural practices and the families at home, could help to increase the available support, improve communication, and enhance knowledge and confidence.
Limitations The participants were a homogeneous group, analogous in culture, ethnicity, and gender and all trained in the UK, and the families they cared for were all from similar backgrounds. Although this is in some senses a strength, it also poses limitations on the transferability of the results to other international rural contexts, where demographic diversity, health-care structures and priorities may differ.
Recommendations for practice Emotional stress in nurses should be recognised by managers and health-care commissioners, and debriefing and reflective practice should be made available. Key issues related to CYP palliative care should be introduced on adult palliative care training programmes. Children’s nurses should be identified as keyworkers to provide practical, educational, and psychological support to adult colleagues. More sophisticated and available telemedicine could link family homes and rural practices.
Further research Additional research is needed into the emotional impact of delivering care to CYP in the home as opposed to hospital settings. The complexity of the dual personal–professional relationship experienced by rural nurses when caring for dying CYP should be explored. Similar studies could investigate the impact of this type of care on GPs and allied health professionals.
Conclusion The dearth of international literature relating to the lived experiences of adult community nurses caring for dying CYP in their homes suggests that this is an underdeveloped field of research. It is evident that, regardless of their experience, the nurses were affected by the deaths of the children at both professional and personal levels, leaving a legacy of unforgettable memories. The nurses interviewed were highly experienced yet had minimal exposure to this type of care in their nursing careers. The data suggested that levels of self-efficacy were directly related to type of training, with a child-nursing registration appearing to be a positive influence in nurses coping
© 2013 MA Healthcare Ltd
❛Resources for providing 24-hour end-of-life care ... were limited as very small local teams and caseloads were spread over wide geographical areas.❜
International Journal of Palliative Nursing 2013, Vol 19, No 11
ional Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 4, 2015. For personal use only. No other uses without permission. . All rights re
Research
effectively with the unique pressures experienced. There is a need for early interprofessional working, collaboration, and role clarity, affording nurses the opportunity to build knowledge, skills, and relationships. Specialist children’s nurses should be expected and resourced, with the assistance of technology, to act as keyworkers for families. They should also provide direction, education, and support to adult community nurses involved in this type of care on an individual and timely basis. Ethical issues and dilemmas around rural health-care were highlighted that require more in-depth research, including into the views of other health professionals. The findings illustrate the need for health-care commissioners to comprehend these issues when planning recruitment, resources, educational opportunities, and staff support for this nursing group. The international rise in the profile of CYP palliative care, along with the publication of guidance frameworks (Scottish Government, 2012), should give families the confidence to opt for home as the place for quality EoLC for their CYP. With this change in focus from a hospital location it is likely that rural adult community nurses will be increasingly involved in this care. Protecting the wellbeing of this staff group will help to ensure the quality and efficacy of care, which may in turn significantly influence both family and professional bereavement. I● JPN Acknowledgments The author wishes to acknowledge Irene McTaggart (Senior Lecturer in Nursing, Professional Regulation, College Lead Interprofessional Learning, University of Dundee) for her academic supervision of the author’s MSc dissertation and for her support and encouragement in disseminating the findings.
© 2013 MA Healthcare Ltd
Declaration of interests This study had no external sources of funding. The authors have no conflicts of interest to declare. ACT (2009) A Guide to the Development of Children’s Palliative Care Services. Third edition. ACT publications, Bristol Barbour RS (2000) The role of qualitative research in broadening the ‘evidence base’ for clinical practice. J Eval Clin Pract 6(2): 155–63 Beringer AJ, Eaton NM, Jones GL (2007) Providing a children’s palliative care service in the community through fixed-term grants: the staff perspective. Child Care Health Dev 33(5): 619–24 Bradford N, Bensink M, Irving H et al (2012) Paediatric palliative care services in Queensland: an exploration of the barriers, gaps and plans for service development. Neo Paed Child Health Nurs 15(1): 2–7 Carter B, Cummings J, Cooper L (2007) An exploration of best practice in multi-agency working and the experiences of families of children with complex health needs. What works well and what needs to be done to improve practice for the future? J Clin Nurs 16(3): 527–39 Contro NA, Larson J, Scofield S, Sourkes B, Cohen HJ (2004) Hospital staff and family perspectives regarding quality of pediatric palliative care. Pediatrics 114(5):
International Journal of Palliative Nursing 2013, Vol 19, No 11
1248–52 Davies B, Sehring SA, Partridge JC et al (2008) Barriers to palliative care for children: perceptions of pediatric health care providers. Pediatrics 121(2): 282–8 Dunlop S (2008) The dying child: should we tell the truth? Paediatr Nurs 20(6): 28–31 Elo S, Kyngäs H (2008) The qualitative content analysis process. J Adv Nurs 62(1): 107–15 Gunther M, Thomas SP (2006) Nurses’ narratives of unforgettable patient care events. J Nurs Scholarsh 38(4): 370–6 Kenny A, Endacott R, Botti M, Watts R (2007) Emotional toil: psychosocial care in rural settings for patients with cancer. J Adv Nurs 60(6): 663–72 Liben S, Papadatou D, Wolfe J (2008) Paediatric palliative care: challenges and emerging ideas. Lancet 371(9615): 852–64 MacKean G, Thurston WE, Scott CM (2005) Bridging the divide between families and health professionals’ perspectives on family-centred care. Health Expect 8(1): 74–85 Maunder EZ (2006) Emotion work in the palliative nursing care of children and young people. Int J Palliat Nurs 12(1): 27–33 McCloskey S, Taggart L (2010) How much compassion have I left? An exploration of occupational stress among children’s palliative care nurses. Int J Palliat Nurs 16(5): 233–40 Neilson SJ, Kai J, Macarthur C, Greenfield SM (2011) Caring for children dying from cancer at home: a qualitative study of the experience of primary care practitioners. Fam Pract 28(5): 545–53 Nelson W, Pomerantz A, Howard K, Bushy A (2007) A proposed rural healthcare ethics agenda. J Med Ethics 33(3): 136–9 Nursing and Midwifery Council (2010) Standards for Pre-Registration Nursing Education. NMC, London O’Leary N, Flynn J, MacCallion A, Walsh E, McQuillan R (2006) Paediatric palliative care delivered by an adult palliative care service. Palliat Med 20(4): 433–7 Papadatou D, Bellali T, Papazoglou I, Petraki D (2002) Greek nurse and physician grief as a result of caring for children dying of cancer. Pediatr Nurs 28(4): 345–53 Pesut B, McLeod B, Hole R, Dalhuisen M (2012) Rural nursing and quality end-of-life care: palliative care ... palliative approach ... or somewhere in-between? Adv Nurs Sci 35(4): 288–304 Price J, McNeilly P (2006) Developing an educational programme in paediatric palliative care. Int J Palliat Nurs 12(11): 536–41 Quinn C, Bailey M (2011) Caring for children and families in the community: experiences of Irish palliative care clinical nurse specialists. Int J Palliat Nurs 17(11): 561–7 Rashotte J (2005) Dwelling with stories that haunt us: building a meaningful nursing practice. Nurs Inq 12(1): 34–42 Schreiner LS, Pimple C, Wolf Bordonaro GP (2009) Palliative care for children: preparing undergraduate nursing students. Nurs Educ 34(4): 162–5 Scottish Government (2012) A Framework for the Delivery of Palliative Care for Children and Young People in Scotland. Scottish Government, Edinburgh Sourkes B, Frankel L, Brown M et al (2005) Food, toys, and love: pediatric palliative care. Curr Probl Pediatr Adolesc Health Care 35(9): 350–86 Spencer L, Battye L (2001) Palliative care in the community for children with cancer in South East England. Eur J Oncol Nurs 5(3): 190–7 Swinney R, Yin L, Lee A, Rubin D, Anderson C (2007) The role of support staff in pediatric palliative care: their perceptions, training, and available resources. J Palliat Care 23(1): 44–50 Thacker K (2008) Nurses’ advocacy behaviours in end-oflife nursing care. Nurs Ethics 15(2): 174–85 Wilkes LM, Beale B (2001) Palliative care at home: stress for nurses in urban and rural New South Wales, Australia. Int J Nurs Pract 7(5): 306–13
❛Protecting the wellbeing of this staff group will help to ensure the quality and efficacy of care, which may in turn significantly influence both family and professional bereavement.❜
547
ional Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 4, 2015. For personal use only. No other uses without permission. . All rights re
