Being on the outside--critical reflections of the research process in paediatric palliative care.

Waugh, Fran ; Bonner, Michelle

INTRODUCTION

In Australia in 1997, 196 (27 percent of the total of 726) children aged from 1 to 14 years died because of malignant diseases (life-threatening) and congenital anomalies (life-threatening illnesses) (Australian Bureau of Statistics 1997). This number is relatively small, however, such children and their parents, as the main carers of children with life-threatening illnesses, frequently live with chronic trauma and uncertainty. Although the life expectancy of children living with a life-threatening illnesses has increased, the knowledge about parents' experiences is still limited.

Our qualitative research undertaken in 2002-03 aimed to explore parents' experiences of the Australian health system, in particular paediatric palliative care and social care and informal supports when caring for their child with a life-limiting illness who had died. It is not the intention of this article, however, to present and discuss the research findings but rather to focus on the processes of undertaking research in this area of paediatric palliative care. The purpose of this discussion is to elaborate on the issues and challenges of such sensitive research with parents whose children had died and make potential recommendations for future researchers.

BACKGROUND OF PAEDIATRIC PALLIATIVE CARE IN AUSTRALIA

The notion and practice of providing palliative care to children and young people is underdeveloped in Australia (Hynson, Gillis, Collins, Irving, Trethewie, 2003). The idea of palliative care of children is relatively new and has relied upon a small pool of parents and professionals supporting families and their children at the end-of-life (Collins 2000). Hence there is limited research on palliative care for children. Australian studies have tended to focus on the care of the child in the late dying stage in a hospital setting (Mallinson and Jones 2000) and the barriers to the provision of palliative care in paediatrics (Hynson and Sawyer 2001, 323).

Literature on the parents' experiences of caring for their child who has died is also limited (Collins 2000; Department of Health and Ageing 2004). One Australian study involved in-depth interviews with 17 parents of 10 children who had died. The study identified: the services and supports parents valued; the services and supports parents found to be unhelpful and alienating; the financial costs incurred by parents when caring for their dying child; and the importance for parents of informal social supports, namely relatives and friends (Darbyshire, Haller and Fleming 1997, 7-9). Another Australian study explored the difficulties faced by parents when caring for their dying child at home (Collins, Stevens and Cousens 1998). This study identified that the most difficult aspect of home care for parents was watching the physical decline of the child. In 2004 the Department of Health and Ageing, Australia noted that there still remained significant gaps in the knowledge and understanding of how parents and families experience paediatric palliative care.

The underdeveloped nature of paediatric palliative care has been noted in the National Palliative Care Strategy (Commonwealth of Australia 2000, 14) which aims to support continuous improvement in the quality and effectiveness of all palliative care service delivery across Australia. It identifies children with life-threatening illnesses as a group needing flexible service models for delivery of palliative care to suit their specific clinical and social needs.. The development of flexible services to respond to these children and their families must be based on sound knowledge about their diverse needs and experiences of health and social care. The research discussed here sought to contribute to that knowledge.

RESEARCH AIMS

Our qualitative research aimed to explore parents' experiences of the Australian health system, in particular paediatric palliative care; social care; and informal supports when caring for their child with a life-limiting illness. In essence this research aimed to explore the question of resources and capacities: how health promoting palliative care resources could enhance parents' capacities to care for their children.

The research realised this general aim by pursuing specific aims through:

* exploring parents' experiences of parenting a child with a life-threatening illness

* exploring parents' use of formal health and social care services at different stages of their child's deteriorating illness

* exploring parents' use of informal sources of personal and social support at different stages of their child's deteriorating illness

* documenting parents' evaluation of formal and informal sources of care and support, and

* examining the implications of the research findings for the development of health promoting palliative care in policy and practice.

For the purpose of this research palliative care was defined as "the combination of active and compassionate therapy that meets the physical, social, psychological and spiritual needs of the patient [child] and family when medical treatment is no longer possible."(Oleske and Czarniecki 1999, 1287) Whereas the focus of studies on palliative care of children has tended to be on the final dying stage, as children with life-threatening illness live longer (Collins 2000), it is important to consider ways of enhancing a sense of autonomy, control and support for all those involved.

This is what Kellehear (1999a, 1999b) describes as health promoting palliative care. The key features of health promoting palliative care are social interventions namely: providing information and education about health, dying and death; providing social supports (personal and community); enabling those living with a chronic illness to adjust to lifestyle changes and enabling increased participation of parents and children in the decisions which affect their lives to provide them with a sense of control. It is also about influencing professional and policy development in order to promote a sense of control and support for children living with a life-threatening illness and their families.

Four categories of life-threatening illnesses in children that might benefit from health promoting palliative care are:

* diseases where premature death is likely but intensive treatment may prolong high-quality life, for example cystic fibrosis

* conditions for which curative treatments are possible but may fail, for example malignancy

* progressive conditions where treatment is exclusively palliative, for example congenital anomalies and

* conditions with neurological impairment, causing weakness and susceptibility (Collins 2000; Baum 1994).

RESEARCH METHODOLOGY

Qualitative research provides rich data about social issues where there is limited knowledge as researchers are "more interested in understanding how others experience life, in interpreting meaning and social phenomena, and in exploring new concepts and developing new theories." (Alston and Bowles 2003, 10) In this study as the researchers were interested in understanding how parents experienced caring for their child who had died, qualitative research was undertaken. It provided the opportunity for research participants to have a voice by speaking about their experiences. Such an approach is a constructivist one which enables research participants to challenge professional's taken-for-granted assumptions about their intervention with parents and children (Parton and O'Byrne 2000). As with any qualitative research, this study does not claim to be representative or generalisable to all parents who have cared for a child who has died (Alston and Bowles 2003).

Interviews

It was intended in the original research proposal to conduct three focus groups with parents and 15 individual or couple interviews. Those participating would be members of self-help groups coming from metropolitan and regional New South Wales. The researchers contacted 20 self-help groups for parents with a child or a young person who had a life-limiting illness; major non-government associations that support families and children with a life-limiting illness as well as two major paediatric hospitals, about the research and the possibility for parents to participate. However, due to the difficulties in recruiting parents, which is discussed in a later section, only eight mothers volunteered to participate in individual interviews. Hence our methodology was modified to conducting in-depth individual interviews with mothers.

These individual interviews explored the mothers':

* understanding of what were the critical times during their child's illness

* understanding of what helped them in their day to day lives at the different stages of their child's deteriorating illness (what the mothers considered they needed and what could have been of benefit)

* use of and access to formal health and social care during the critical times

* use of and access to informal sources of personal and social support at different stages of their child's deteriorating illness, and

* evaluation of the adequacy, flexibility and responsiveness of these formal and informal sources of care and support.

The individual interviews were either electronically recorded and transcribed, or detailed notes were taken during the interview. Data obtained from the interviews was analysed by major themes in considering the implications for social and health policy, in particular service delivery and social supports in paediatric palliative care.

The eight mothers had cared for a child or young person who had subsequently died following a life-limiting illness. The children and young people's age at death ranged from 5 years to 20 years. The interviews were conducted face-to-face or over the phone. Some of the mothers who volunteered to participate in the research lived interstate and despite knowing the interview would have to be over the phone still chose to participate. The interviews ranged from 1 1/4 hours to 2 1/2 hours.

We now concentrate on some of the issues which arise in doing research of this nature and how we attempted to resolve them.

POTENTIAL DIFFICULTIES FOR RESEARCHERS

Ethics approval

In designing the research and seeking ethics approval it is important to consider whether the potential research participants could be vulnerable in the research process and if so what steps would need to be taken to address potential issues for such participants. "Vulnerable populations are groups of people who can be harmed, manipulated, coerced or deceived by researchers because of their diminished competence, powerlessness, or disadvantaged status." (Rogers 1999 cited in Sutton et al 2003, 106) Parents whose children have died could be described as a vulnerable population. In her study for Barnardos in the UK, Alderson and Goody (1995) determined that several key questions needed to be addressed in any research undertaking which involved vulnerable participants including:

* what is the purpose of the research?

* what are the costs and benefits for participants?

* what was the impact of the research upon the participants?

* what are the privacy and confidentiality issues?

* what was the involvement of the participants in planning the research?

* did the participants consent to being involved in the research?

These issues were considered and addressed when developing and implementing the research.

However, undertaking research into the area of death, and especially the death of a child, can be problematic due to the sensitive nature of the issue. Ethics approval for this research was granted by the University Ethics Committee on the condition that the researchers would not approach the parents directly to participate in this research.

EXPERIENCE OF THE RESEARCHERS

In recognition of the sensitive nature of this research and the potential of causing further distress the researchers had:

* to have had experience in the area of grief and loss

* to be able to respond appropriately to grief stricken parents and

* to be able to make an assessment of the parents mental state.

In addition, both researchers needed to be knowledgeable about where to obtain assistance from support agencies if required. During the research one mother was given information about a bereavement service which she was not previously aware of.

RECRUITING RESEARCH PARTICIPANTS

Initial contact was made by phone with national and state self-help groups, paediatric hospitals, grief and loss organisations and peak bodies for major chronic or lifelimiting illnesses. This phone contact was followed with written information for both the organisations and interested parents. Although this process ensured parents were not contacted directly by researchers, it relied heavily on organisations, professionals and self- help groups choosing if, when and how to disseminate the information about the research and the opportunity for parents to participate. A number of the organisations contacted believed they faced a dilemna in deciding whether to give parents the opportunity to participate. Some of these key players expressed their reluctance in informing parents about the research as they perceived it would create distress or pain to the parent talking about their child. There was also a concern by some self-help groups that placing information about the research into their newsletters, for example, would be upsetting to those parents whose children had the chronic life-limiting illness and were still alive. As a result, many self-help groups and health professionals chose not to pass on the information about the research and the possibility to participate, to parents. Consequently dissemination varied greatly, from organisations sending personal letters to bereaved parents, to one health provider verbally discussing the research at a bereaved parents' support group and a self-help organisation placing an advertisement about the research in their newsletter.

Most self-help groups develop from people who have recognised a gap in a service and they decided to create their own support network (Koonin and Napier 2000). The network can expand to include telephone support, information resources, editing a newsletter, maintaining a web site which is provided by parents who are volunteers in their own time. This poses potential strategic difficulties to researchers such as researchers being able to make contact with the relevant executive member, to follow up on phone conversations and the information sent out. In addition, as the purpose of self-help groups is to support and protect their members, executive members must be discerning about allowing researchers to access their members to ensure that their parents will not be exploited. The researchers in this study, therefore, had to allow additional time to establish their credibility with the self-help group.

As the majority of self-help groups and health professionals did not have ongoing contact with parents once their child had died, many considered they would be intruding in the parents' lives if they were to re-contact them to provide information about the research.

Two children's hospitals were very supportive of the research but were conducting their own research at the time into paediatric palliative care. As a result, the institutions did not want the parents feeling 'over researched', thereby limiting access to their parents. One hospital agreed to inform parents about the research at their bereaved parents' support group.

Overall, a number of professionals, services and organisations seemed to make assumptions on behalf of the parents by not informing them about the research. These assumptions included, that parents would have 'moved on' and would not want to talk about their child that had died; that it is harmful or distressing to parents to talk about their child that has died; and that the parents would have previously had numerous opportunities to talk, debrief and ventilate to practitioners both during their child's illness and after their child's death.

Such assumptions were in direct contrast to the researcher's experience with the mothers interviews. During their child's life all the mothers had had some opportunities to talk about their day to day experience but had not been afforded the opportunity to share the in-depth meaning of caring for their child who had died. They were anxious to talk about their children and in the face-to-face interviews brought out photos, scrapbooks and memorabilia of their children to show the researchers. Like all proud parents, these mothers wanted to talk about their children and at no time expressed a desire not to talk further as they had "moved on". In fact as expected, all the mothers had been deeply affected by the death of their child and some disclosed thoughts and feelings to the researchers that they had not told anyone else.

Consent

During this process the issues of privacy and confidentiality was another issue which needed special consideration. Consent forms were completed by all organisations that chose to inform parents about the research. This was a requirement of the Ethics Committee to ensure that no parents were directly approached about the research by the researchers. Furthermore no organisation was informed by the researchers if a parent connected to their service chose to participate. Identifying details of health professionals or organsiations were not included in the interview transcriptions or notes. All of the mothers who agreed to be interviewed, completed individual consent forms.

Issues for future researchers

Researchers need to recognise that the death of a child is a sensitive area to undertake research in. This needs to be considered in any research proposal by ensuring that the key questions raised by Alderson and Goody (1995) around researching vulnerable participants has been clearly addressed.

The recruitment of research participants can prove to be difficult due to some health professionals, non-government organisations and self-help groups taking on a protective or gatekeeper role towards the parents. To overcome this researchers might consider developing joint research proposals with a key organisation (government or non-government) already providing a service to this population group.

In addition, it would be useful to consider creative ways of including parents throughout the research process. This could include being a member of a reference group which would contribute to all areas of the research.

CONCLUSION

Research on such a sensitive area requires sensitivity and specialist knowledge on the part of the researcher. Not to invite parents to tell their stories and to consider the implications of this for the development of future practices and policies in paediatric palliative care would be remiss in the era of evidence based practice. Such an invitation acknowledges the potential contribution of the parents; the value of the parent in telling 'their story'; and the value professionals place on understanding the ways parents dealt with the difficulties and complexities, in particular, how formal and informal supports can assist or hinder parents while caring for their child with a life-limiting illness.

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* * Authors:

Fran Waugh: School of Social Work and Policy Studies, Faculty of Education and Social Work, University of Sydney. Email: f.waugh@edfac.usyd.edu.au

Michelle Bonner: School of Social Work and Policy Studies, Faculty of Education and Social Work, University of Sydney. Email: m.bonner@edfac.usyd.edu.au