Exploring the Experiences and Perspectives of Families using a Children's Hospice and Professionals Providing Hospice Care to Identify Future Research Priorities for Children's Hospice Care

Malcom et al. (2008) full text summary PDF

For which topic were research priorities identified?

children's hospice care

In which location was the research priority setting conducted?

Europe - United Kingdom

Why was it conducted at all?

Palliative care for children with life-limiting conditions involves the provision of physical, emotional, social and spiritual support at every stage of their illness to ensure the best possible quality of life for the child and their family. The principles of palliative care for children and adults are comparable yet there are many ways in which children's palliative care is unique and as such it has emerged as a specialist field in its own right. Although research in this new and rapidly evolving speciality has increased steadily over recent years, published outcome data to provide an evidence base on which care can be based is not adequate, thus showing the need for a clear research agenda to address key questions. Indeed, criticisms have been levied that children's palliative care lacks a rigorous empirical basis and that practice has developed through clinical experience, anecdotal evidence and modifications of adult palliative care management, creating an opportunity to move services forward by identifying and pursuing key research topics.

What was the objective?

to generate a list of priority topics for children's hospice care research in Scotland from the perspective of its key stakeholder

What was the outcome?

a list of 14 research topics

How long did the research prioritization take?

3 months

Which methods were used to identify research priorities?

focus group; interview

How were the priorities for research identified exactly?

Step 1: focus groups with hospice staff and volunteers: participants were asked to describe experiences of using the hospice and its services, experiences of providing palliative care to children with life-limiting conditions and their families and asked to identify the topics they believed were important as future research priorities for CHAS, additionally telephone interviews with families and professionals. Step 2: data processing: thematic analysis, resulting in 14 principal research topics, 5 research topics mentioned in all three stakeholder groups

Which stakeholders took part?

Families using hospice services, hospice staff and volunteers and professionals associated with the hospice. Interviews: 5 families using hospice services. Focus groups: 4 groups with 44 hospice staff and volunteers. Interviews: 18 professionals associated with the hospice.

How were stakeholders recruited?

A purposive sampling strategy was used. A senior member of the hospice staff was requested to identify up to five families whose current circumstances would make it suitable to approach and invite to participate in an interview. Initial contact with the potential families was made through this senior member of the hospice staff, who requested the families' permission to be sent a project information sheet by the researchers. Families were advised to contact the researchers directly to discuss the project in greater detail and to obtain formal consent should they wish to participate. All five families agreed to participate. To recruit staff and volunteers operating within the hospice, posters were displayed at each of the two hospices inviting staff and volunteers to take part in the focus groups. Forty-four individuals agreed to participate. To recruit professionals linked to the hospice organization, in consultation with the project Steering Group and hospice staff, key professionals were identified who had an association with the hospice and/or with families accessing the service (often as referrers to the organization), and an informed interest or expertise in the care of children with life-limiting conditions and their families. This sample included key strategic professionals in paediatric palliative care across the United Kingdom.

Were stakeholders actively involved or did they just participate?

Stakeholders not only participated but were also actively involved in the research prioritization process: They were part of a steering group.