Research

Grief experiences of nurses in Ireland who have cared for children with an intellectual disability who have died

Abstract

Background: The personal grief experience of nurses who have cared for children with an intellectual disability who have died is little understood. Method: This descriptive qualitative study was initiated to ascertain nurses’ knowledge and personal experience of grief and how this is managed. Semi-structured interview was the method used to collect data from eight nurses who had cared for a child with an intellectual disability who had died. A pragmatic approach to qualitative data analysis was adopted. Results: Of the eight main themes identified, the four most prevalent are discussed in detail: grief, relationship with the child, end of life, and support. The findings demonstrate that nurses have a good understanding of grief, but the way they experience and manage it varies. Conclusion: The study suggests that nurses who have cared for children with an intellectual disability who have died may experience disenfranchised grief. Nurses seek support from a variety of sources. Organisational support is important for nurses following the death of a child for whom they have provided care. Key words: Grief l Nursing l Children l Intellectual disabilities l Support l Qualitative research l Semi-structured interviews This article has been subject to double-blind peer review.

P Ciara MacDermott, Post Registration Children’s Nursing Student, Children’s University Hospital, Temple Street, Dublin; Paul Michael Keenan Assistant Professor in Intellectual Disability Nursing, Trinity College, Dublin Correspondence to: Ciara MacDermott ciara.nurse.emt@gmail. com

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aediatric palliative care is a developing area of practice, with a focus on providing the best possible care to children with lifelimiting conditions and their families (Liben et al, 2008). The Republic of Ireland has a population of 4.6 million people, in which there are at least 1 400 children living with a life-limiting condition (Irish Hospice Foundation and LauraLynn Ireland’s Children’s Hospice, 2013). Some 350 children in Ireland die each year because of a lifelimiting condition (Department of Health and Children, 2009). The European Association of Palliative Care (2009) acknowledges the need for continual changes and developments in the area of paediatric palliative care. The development of children’s palliative care in Ireland is supported by research, both Irish and international, and is gradually emerging at an international level. Although it is recognised that Ireland is progressing rapidly in this field, it is also acknowledged

that there is substantial work yet to be done. In all developing areas of care it is necessary to research the care provision, but those providing the care must also be considered. To determine the need for further research into this area, a literature review was conducted using CINAHL, Pubmed, Cochrane, Medline, and Internurse. An extensive search was required in order to ascertain the availability of relevant literature, and therefore there were no date restrictions. Results were required to contain at least two of the search terms. The following search terms and their equivalents were used: ‘grief’, ‘nurse’, ‘nurse’s role’, ‘grief experience’, ‘death’, ‘intellectual disability’, ‘palliative care’ and ‘children’. No studies were retrieved that focused on the grief experience of the nurse who had cared for a child with an intellectual disability who had died, thereby underpinning the need for this study to be undertaken. Many studies have been completed in relation to nurses’ response to death and dying (Wakefield, 2000) and the stress of nurses due to death (Barnes, 2001), but according to Lobb et al (2010a), little literature exists on nurses’ personal grief experience associated with the deaths of their clients. The paucity of studies in the area of intellectual disability in particular suggests that little is known about the personal grief experience of these nurses. Similar studies have been conducted that relate to the general paediatric population, and will be referred to in this paper. A study by Papadatou (1997) suggests that nurses may experience a ‘triple failure’ on the death of a child, as they may feel that they have failed at saving the child, did not protect the child, and betrayed the family. She suggests this failure can increase grief reactions, helplessness and sadness. When caring for a child with an intellectual disability, particularly over a prolonged period, it is understandable that therapeutic relationships develop between the nurse and child. It is therefore likely that there will be an impact on the

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Ciara MacDermott and Paul Michael Keenan

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nurse when the child dies, as grief is a natural response to loss (Fisher, 1991). Grief is an area that has been widely researched in the past. Rando (1986) wrote on ‘anticipatory grief’ – the grief suffered when a loss is expected. Disenfranchised grief was defined by Doka (1989) as the grief experienced when a loss is incurred that is not or cannot be openly acknowledged, publicly mourned, or socially supported, applying to unrecognised relationships and losses, as well as to certain types of death. The concept of ‘continuing bonds’ was introduced by Klass et al (1996), but the adaptive nature of this concept was challenged by Field et al (2003). Neimeyer (2006) studied ‘meaning making’ through continuing bonds, and Epstein et al (2006) suggest continuing bonds are not necessarily unhealthy when grieving the loss of a person to whom there was a close attachment. Owen (2000) suggests that ‘cumulative grief’ can be experienced by nurses, which occurs when a second or subsequent loss occurs while the person is still grieving a previous loss. Neimeyer (2006) also discusses ‘complicated grief’. Complicated grief is an intense prolonged grief that impairs the person from resuming life as they knew it before the death occurred. The predictors of complicated grief are recognised by Lobb et al (2010b) as including attachment style and the relationship to the deceased.

Aim and objectives The study aim was to explore the personal grief experience of nurses who have cared for a child with an intellectual disability who has died, with a view to drawing awareness to this area, to potentially enhance the body of knowledge, and to develop practice to improve this area of care and support. It is hoped that this might result in the development of grief support and training for paediatric palliative nurses. The objectives of this study were to ascertain nurses’ understanding of grief, to gain an understanding of the nurses’ personal grief experiences, and finally, to gain insight into the support systems which nurses use to manage personal grief, and to evaluate their effectiveness.

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Methodology A qualitative descriptive approach was viewed as the most appropriate methodology as it provided participants with the opportunity to describe their grief experience and how this was managed, to gain a deeper understanding of the personal grief experiences of these nurses, and give a possible insight into grief reactions of other nurses in similar situations.

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Ethical considerations Ethical approval was granted by Trinity College Dublin. The sensitivity of the research area and its potential as an emotionally charged topic were recognised. The possibility of nurses finding this topic upsetting was anticipated. A psychologist was available to provide support, if required. The nurses were advised that if they preferred to speak to a professional external to the organisation, this option was also available free of charge. Informed consent was obtained from the participants, who were aware of their right to withdraw from the study at any stage. Strict measures were taken to maintain confidentiality during and after the study.

❛ ...this might result in the development of grief support and training for paediatric palliative nurses. ❜

Setting The study was conducted in the respite, residential and school environment, within an Irish health-care organisation for people with an intellectual disability. Interviews were conducted in a private room in the participant’s location of work.

Recruitment of participants Participation in this study was open to all nurses, provided they were registered (i.e. general, intellectual disability, psychiatric, paediatric, and midwives) because many nurses were not working in the same area as they originally trained. All of the nurses worked in the same organisation. Purposive sampling was adopted, and the sample consisted of eight registered nurses. The criteria for inclusion were that nurses must be registered and have worked with a child who had an intellectual disability who had died within the previous 7 years. This time frame was chosen to ensure the study was open to a large number of nurses, and because a period greater than 7 years may introduce bias into their recall of their experience. A gate-keeper facilitated the distribution of participant information leaflets, participant consent forms, and letters inviting nurses to participate in the study. Only eight of the nurses who consented to participate in the study met the criteria, each having experienced more than two deaths. Table 1 presents participants’ biographical details.

Data collection Semi-structured interviews were conducted using an interview schedule informed by the literature review and the study aims. This approach enabled the researcher to gather the required data, while also giving freedom to the participant in terms of what information they wished to disclose. Each interview lasted one hour. All interview data was recorded using a sound-recording device, and transcribed verbatim by the researcher. Participants consented to the inter-

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Table 1. Participant biographical details (n=8) Gender

Female = 8

Male = 0

Age profile

21–30 years = 2

31–40 Years = 3

41–50 years = 1

51–60 years = 0

61–70 years = 2

Nursing experience

5–10 years = 2

11–15 years = 3

16–20 years =1

21–25 years =0

26–30 years = 0

41 years or older = 1

36–40 years = 1

Intellectual disability = 5

General = 3

Palliative training

Training = 4

No training = 4

Paediatric training

Training = 3

No training = 5

Intellectual disability training

Training = 6

No training = 2

Bereavement training

Training = 0

No training = 8

view process the week before the interview, and again verbally on the day of the interview.

‘I didn’t feel, as his carer, I was entitled to grieve – that was only for his family.’

Data analysis

When asked to speak about a child who had died, five of the participants referred to repeated losses:

A pragmatic approach to qualitative data analysis (Newell and Burnard, 2011) was used. After each interview the researcher noted any relevant topics that were discussed that had not been directly addressed in the topic guide. The researcher then read the transcripts of the interviews, noting any general themes that emerged from the data. Several of the themes were expected, such as grief and attachment, but other themes also emerged such as helplessness and unexpected deaths. After the re-reading of the transcripts, 24 open coding headings were generated. These headings covered all aspects of the data from each of the eight transcripts. The number of codes was then reduced to eight key themes and their relevant sub-themes using higher order headings (see Table 2).

Findings and discussion The four most prevalent themes are discussed in this paper.

Grief Papadatou (2000) reported that grief can be experienced by health professionals. This grief is an ongoing fluctuation between experiencing and avoiding grief reactions, and is viewed as necessary, adaptive and healthy. The nurses in this study were asked about their understanding and experience of grief. Professionalism was mentioned several times as a reason why nurses couldn’t be seen to grieve. One nurse suggested: ‘Some nurses just put on a professional front and try not to appear that they are grieving.’

Disenfranchised grief was shown by participants who perceived grief to be an emotion that only the family should be allowed to display. One nurse commented:

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‘We’ve lost so many children over the years it’s difficult to really just think of one.’

The prevalence of disenfranchised grief in the data was unforeseen. This grief was vocalised and physically displayed in the interviews. These findings correlate to those of Romesberg (2004), who suggests that disenfranchised grief may be experienced by health-care providers following the loss of a patient, or many patients over time. The ‘repeated losses’ mentioned by study participants can result in cumulative grief. A study by Owen (2000) suggests that cumulative grief may occur if staff are not given adequate ‘space’ to grieve. Wakefield (2000) highlights that nurses are expected to carry on as ‘normal’ once a patient has died, which does not allow for an opportunity for the nurse to grieve for the patient when necessary. Kristjanson et al (2010) also acknowledge that cumulative grief can arise in response to the continuous nature of the work, which became apparent in this study.

Relationship with child Often nurses build a strong therapeutic relationship with their patients. It is recognised that the nurse will ‘react’ to a patient’s death as a result of developing a more personal relationship due to the intimacy and frequency of the care needs (Nordgren and Olsson, 2004). Emotional and psychological distress can also be experienced by the nurse when their patient dies, because of this relationship (Cooper and Barnett, 2005). According to Doka (1989), regardless of the bond that develops between the nurse and patient, often the nurse’s grief remains hidden. In the intellectual disability residential setting,

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31–35 years = 0 Nursing registration type

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the nurse may spend more time than the family with the child, therefore it is likely and often inevitable that a bond would develop. Wakefield (1996) also suggests that a nurse may have a similar feeling of hurt to that of the family of a dying patient, because nurses establish strong therapeutic bonds with dying patients. It is important to note that this study is not to compare the nurses’ grief to the grief of the parents of the child. McCloskey and Taggart (2010) explored the experiences of the stress of nurses working with children in a palliative care setting and examined the consequences of this stress upon the nurses’ lives. Their study highlights occupational stress among children’s palliative care nurses, suggesting there are consequences for nurses who become attached to children and their families, which often leads to a deep sense of loss at the death of the child. Each nurse in this study discussed their professional relationship with the child and also their attachment: ‘When you are working with children they say you have to be professional, but I think that you can’t help it, you become personal, you become attached to them.’

Of the eight nurses, seven described a strong attachment to the child in their care. It was clear by some of the comments made that the children were very special in the lives of the nurses:

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‘We weren’t supposed to have ‘favourites’, but it can be difficult... He would also turn his head to follow me as I moved around the room. I think the fact that he even did something as small as that for me, and didn’t for others, created a little bond between us. He would always settle for me. There was just something so special about him.’

Relationships should remain professional, but it is recognised by Peterson et al (2010) that being able to maintain professional distance while caring for dying patients and their families is a common concern. In the intellectual disability setting, nurses often care for a child and family over a period of years. Maunder (2006) acknowledges that it can be difficult not to form some attachment to the child. Papadatou et al (2000) and Liben et al (2008) suggest that nurses often grieve for the loss of a child when they have developed attachments. From the data collected it is evident that all except one of the nurses interviewed had formed a strong attachment with a child in their care who died. The question

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Table 2.Themes and sub-themes determined from data analysis Themes

Sub-themes

Grief

Disenfranchised grief Cumulative grief

Relationship with the child

Professional relationship with child Attachment to child

End of life

Comfort at the end of life Discussion about the end of life Planning end-of-life care Unexpected death

Support

Self-support Support from colleagues Support from organisation Not recognising need for support at time of death

Helplessness due to limited experience and knowledge

Experience helps Inexperience of dealing with death Guilt of not knowing how to help

The family of the child

Contact with the family after death Grief experience of the family Grief for the family Supporting the family

The funeral

Taking time off work for the funeral The funeral experience

Focusing on the positive

Further education for the nurse after the death Improved care of subsequent children and families Prayer and religion

remains as to whether a nurse develops an attachment to a child because of the length of time they provide care for the child, the intimacy of the care, or whether it is simply because they are a child.

End of life The location of death for the children who were discussed in the study varied between hospital, home and residential setting. The participants’ comments in relation to the dying child’s comfort were mostly negative, with such comments as: ‘He died in the children’s hospital – in pain.’

The nurses’ feelings of sadness and regret were clear: ‘It was very sad to see someone die in a lot of pain... She could have been more settled and could have died more peacefully. Unfortunately

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she didn’t have that.’

It became apparent that ‘end of life’ was a subject that was not openly discussed: ‘His poor prognosis was something that was brought up in conversation occasionally. There weren’t any official meetings or discussions. Everyone just knew he was a child with a short life expectancy.’

For one nurse, the impending death of the child was something that she had not anticipated: ‘He was so sick for so long that we just kind of got used to him being that way – that was just him – so I suppose I thought he would just go on like that indefinitely.’

This data shows how upsetting some nurses found the death of a child because of the manner in which the child died. ‘Dying in pain’ was the most prevalent issue addressed, which clearly had a negative impact on the nurses involved. Due to developments in paediatric palliative care education and services in recent years, one might hope that ‘dying in pain’ would not be an issue raised in research in the future. With an increase in third-level palliative care education programmes, a children’s hospice and an increase in the number of children’s outreach nurses throughout the Republic of Ireland, a higher standard of care and support can now be provided to children and families. Even when a child has a life-limiting condition, death can come as a shock, partly because the family and nurse accept the child the way they are, and do not see them as a sick child. In the past, advance care planning was often avoided so as not to further burden the family and to maintain some hope. However, a study by James and Johnson (1997) suggests that there is no evidence that early discussion causes loss of hope. It appeared from their comments that some nurses in this study felt the circumstances the child died in could have been more comfortable had there been a care plan in place. With advances in paediatric palliative care, advance care planning is now more widely used, and support has been made available to assist health practitioners with the necessary communication skills (Tsai, 2008).

Support The International Work Group on Death, Dying, and Bereavement (1993) acknowledges that emotional involvement is a prerequisite for quality

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care provision and this necessitates professional support for staff. Each nurse interviewed in this study was asked about the support they received when the child died. One nurse had neither received nor sought support, and appeared comfortable with this: ‘I think I have managed to deal with it in my own way.’

The lack of recognition by some nurses for the need of support after a death became apparent: ‘I didn’t expect anyone to support me through something I felt I shouldn’t have been experiencing. Looking back however, I did need some support.’

The majority of participants identified informal social support as a technique that they used after the death of a child: ‘We just talk about it once in a while together.’

The lack of support from management was also emphasised: ‘Management offered no support – sure they didn’t even think to tell me he was dead.’ ‘The management wasn’t really into that kind of thing – you know, debriefing and talking about feelings.’

There were three methods of support identified by the group of participants: self-support, informal social support from peers, and support from management. For some, self-support may be sufficient in most situations. In a study by Peterson et al (2010), the nurses looked to themselves as well as to others to cope with the death of a patient. There is also the concern that if the nurse never seeks further support, the need for support has actually not been recognised, and may later affect the nurse’s health or practice. If self-support is adequate for some nurses, this must be respected by organisations, but they must also be aware that an occasion may arise where further support is required. Carver et al (1989) describe seeking social support as a method of support. Peterson et al (2010) also make reference to using support from colleagues as a method of coping after a death. They feel this is an effective support method, as they share the unique experience of caring for a dying patient – there is a level of understanding that others cannot provide.

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❛ Even when a child has a life-limiting condition, death can come as a shock. ❜

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According to Wakefield (2000), the nursing profession lacks a clearly defined protocol to assist nurses in managing their feelings of loss when faced with a patient’s death. Fisher (1991) suggests that by offering staff time to grieve and providing continuing support, it is more likely that bereavement overload and professional burnout will be prevented. Complicated grief may result when a nurse does not receive support in a timely manner. The availability of support is vital to ensure staff feel supported, regardless of whether or not they use the system. This will allow nurses to accept that grieving is a normal reaction, decreasing the risk of disenfranchised grief, which may also occur if the loss is not recognised by the management or organisation. The emotional element of children’s palliative care remains undervalued by managers and healthcare services (Maunder, 2008). There are several ways to support staff, including debriefing, counselling sessions, and reflective practice. Nurses may require varying levels of support in different situations or at different stages in their lives. Fisher (1991) identified the importance of ensuring that structured staff support is available as well as informal support as some nurses may not recognise their need for help, or may not seek it. The need for self-care is also recognised in a study by Lobb et al (2010b). From this data, it appears that the management and the organisation have failed in meeting the support needs of these nurses. It is important to note that at no stage did the nurses mention that they actively sought support, or that they were refused support.

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Conclusion This paper has outlined a small-scale research project that explored the personal grief experience of nurses who have cared for a child with an intellectual disability who has died. The nurses interviewed demonstrated their understanding of grief. When describing grief, they mostly focused on the family’s grief rather than their own. Two participants recognised during the interview that they had never had a chance to grieve for the child in their care. Each participant provided an in-depth account of their experience of caring for a child with an intellectual disability who had died in their care, their grief experience, and how this grief was managed. All of the nurses had managed their grief either on their own, with the support of colleagues, or had not previously recognised their grief. While disenfranchised grief and cumulative grief were described by some of the nurses, none of them used these particular terms.

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Participants attached great importance to peer support, although the findings suggest the nurse’s grief must also be acknowledged by organisations. The implication for practice is that organisations should anticipate grief, and support nurses who are grieving so as to minimise further issues such as cumulative grief. Education and training can also be beneficial in the support of staff caring for children at end of life (Papadotou, 1997). Further research in this area would be beneficial, particularly interviewing a similar sample in an organisation where end-of-life planning and programmes for staff support following a death are in place. It is interesting to note that most participants thought it was not professional for a nurse to become attached to a child that they care for. However, this does not appear to deter the nurses from continuing to develop a bond with the children in their care, and the authors addressed this as something that is inevitable; nurses will always form attachments to particular children. The most important aspect is how the nurse professionally manages this, and the support received from the organisation to do so.

❛ There are several ways to support staff, including debriefing, counselling sessions, and reflective practice. ❜

Study limitations The study was undertaken in one service in the Republic of Ireland. Nursing practice, organisational structure and support may differ in other services and countries. There was a small sample for the study and there were no male participants, which limits the data obtained.

Implications for practice Paediatric palliative care is a relatively new area of nursing in Ireland, where continuing research will ensure the development of practice standards. It is hoped this research study will lead to better patient care. Nurses will often experience grief at the loss of a child in their care who has an intellectual disability, and not all nurses will express or manage the grief in the same way. With the correct level of peer and management support, nurses will be better able to provide care for the child, and for their family, throughout the life and death of the child. Declaration of interests There was no conflict of interests in this study. Financial support was received from the Queen’s Institute of District Nurses in Ireland and the Irish Hospice Foundation. Barnes K (2001) Staff stress in the children’s hospice: causes, effects and coping strategies. Int J Palliat Nurs 7(5): 248–54 Carver CS, Scheier, MF, Weintraub JK (1989) Assessing coping strategies: a theoretically based approach. J Soc Psychol 56(2): 267–83 Cooper J, Barnett M (2005) Aspects of caring for dying patients which cause anxiety to first year student nurses. Int

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J Palliat Nurs 11(8): 423–30 Department of Health and Children (2009) Palliative Care for Children with Life-Limiting Conditions in Ireland – A National Policy. http://tiny.cc/zstzpx (accessed 27 November 2014) Doka K (1989) Disenfranchised Grief: Recognising Hidden Sorrows. Lexington Books, Lexington MA Epstein R, Kalus C, Berger M (2006) The continuing bond of the bereaved towards the deceased and adjustment to loss. Mortality 11(3): 253–69 European Association of Palliative Care (2009) Palliative Care for Infants, Children and Young People: The Facts. http://tiny.cc/6bn1px (accessed 27 November 2014) Field NP, Gal-Oz E, Bonanno GA (2003) Continuing bonds and adjustment at 5 years after the death of a spouse. J Consult Clin Psychol 71(1): 110–7 Fisher M (1991) Can grief be turned into growth? Staff grief in palliative care. Background to practice. Prof Nurse 7(3): 178–82 International Work Group on Death, Dying, and Bereavement (1993) Palliative Care for Children. Death Stud 17(3): 277–80 Irish Hospice Foundation and LauraLynn Ireland’s Children’s Hospice (2013) Respite Services for Children with Life-limiting Conditions and their Families – A National Needs Assessment. http://tiny.cc/obrzpx (accessed 27 November 2014) James L, Johnson B (1997) The needs of parents of pediatric oncology patients during the palliative care phase. J Pedatr Oncol 14(2): 83–95 Klass D, Silverman P, Nickman SL (1996) Continuing Bonds: New understandings of grief. Taylor and Francis, Washington DC Kristjanson LJ, Mc Phee I, Pickstock S et al (2010) Palliative care nurses’ perceptions of good and bad deaths and care expectations: a qualitative analysis. Int J Palliat Nurs 16(6): 274–84 Liben S, Papadatou D, Wolfe J (2008) Paediatric palliate care: challenges and emerging ideas. Lancet 371(9615): 852–64 Lobb EA, Oldham L, Vojkovic S et al (2010a) Frontline grief – the workplace support needs of community nurses after the death of a patient. J Hosp Palliat Nurs 12(4): 225–33 Lobb EA, Kristjanson LJ, Aoun SM et al (2010b) Predictors

of complicated grief: a systematic review of empirical studies. Death Stud 34(8): 673–98 Maunder EZ (2006) Emotion work in the palliative nursing care of children and young people. Int J Palliat Nurs 12(1): 27–33 Maunder EZ (2008) Emotion management in children’s palliative care nursing. Indian J Palliat Care 14(1): 45–50 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 Neimeyer RA (2006) Complicated grief and the quest for meaning: a constructivist contribution. OMEGA 52(1): 37–52 Newell R, Burnard P (2011) Research for Evidence-Based Practice in Healthcare. 2nd Edn. Wiley-Blackwell, Oxford Nordgren L, Olsson H (2004) Palliative care in a coronary care unit: a qualitative study of physicians and nurses perceptions. J Clin Nurs 13(2): 185–93 Owen, R. (2000) Relieving stress in palliative care staff. Palliative Care Today 9(1): 4–5 Papadatou D (1997) Training health professionals in caring for dying children and grieving families. Death Stud 21(6): 575–600 Papadatou D (2000) A proposed model of health professionals’ grieving process. OMEGA 41(1): 59–77 Peterson J, Johnson M, Halvorsen B et al (2010) Where do nurses go for help? A qualitative study of coping with death and dying. Int J Palliat Nurs 16(9): 432–8 Rando TA (1986) Parental Loss of a Child. Research Press, Champaign IL Romesberg TL (2004) Understanding grief – A component of neonatal palliative care. Journal of Hospice and Palliative Nursing 6(3): 161–70 Tsai E (2008) Advance care planning for paediatric patients. Paediatr Child Health 13(9): 791–6 Wakefield AB (1996) The practicalities of organising practical surgical nursing work. Unpublished PhD Thesis. Manchester University, Manchester Wakefield AB (2000) Nurses’ responses to death and dying: a need for relentless self-care. Int J Palliat Care 6(5): 245–51

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Grief experiences of nurses in Ireland who have cared for children with an intellectual disability who have died.

The personal grief experience of nurses who have cared for children with an intellectual disability who have died is little understood...
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