Prioritization of Future Research Topics for Children's Hospice Care by Its Key Stakeholders: A Delphi Study

Malcom et al. (2009) 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?

With recent advances in medical technology and supportive care, children with life-limiting conditions (LLCs) are living longer and accessing palliative care and hospice services over a number of years. Palliative care for children with LLCs and their families must be underpinned by a rigorous empirical basis, yet there remains a dearth of published research to provide a sound evidence base upon which their care can be based. Therefore, there is a requirement to develop a clear research agenda in this field.

What was the objective?

to identify and prioritize the future research priorities for children's hospice care in Scotland from the perspective of key stakeholder groups

What was the outcome?

a ranking list of 15 research topics

How long did the research prioritization take?

No information provided.

Which methods were used to identify research priorities?

Delphi

How were the priorities for research identified exactly?

Step 1: Delphi round 1: interviews and focus groups. Step 2: data processing: thematic analysis, resulting in a list of 56 topics. Step 3: Delphi round 2: participants were asked to rate each of the 56 research topics, highest rated 15 research topics were representative of the total sample and of all three participant groups. Step 4: Delphi round 3: survey with 15 questions, participants were asked to re-rate based on group mean ratings from round 2

Which stakeholders took part?

Families, hospice staff/volunteers and professionals. Delphi round 1: interviews: 5 families using hospice services. Focus groups: 4 groups with 44 hospice staff and volunteers. Telephone interviews: 18 professionals associated with the hospice. Delphi round 2: 274 participants, Delphi round 3: 204 participants.

How were stakeholders recruited?

A purposive sampling strategy was used: 1) families currently supported by the hospice 2) staff and volunteers at the hospice 3) professionals linked or who referred to the hospice organization, including representatives from health, social care and education, policy developers and national organizations in the field of palliative care. The participants were considered as ‘experts' based on their experiences of living with and/or caring for a child or young person with a LLC and utilising or providing children's hospice services.

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.