Patients' and Caregivers' Needs, Experiences, Preferences and Research Priorities in Spiritual Care: A Focus Group Study Across Nine Countries
For which topic were research priorities identified?
In which location was the research priority setting conducted?
Africa - Kenya; Africa - South Africa; Asia - South Korea; Europe - Belgium; Europe - Finland; Europe - Poland; Europe - United Kingdom; North America - Canada; North America - USA
Why was it conducted at all?
Spiritual distress is prevalent in advanced disease, but often neglected, resulting in unnecessary suffering. Evidence to inform spiritual care practices in palliative care is limited.
What was the objective?
to explore spiritual care needs, experiences, preferences and research priorities in an international sample of patients with life-limiting disease and family caregivers
What was the outcome?
a ranking list of 4 research areas
How long did the research prioritization take?
2013 - 2014
Which methods were used to identify research priorities?
How were the priorities for research identified exactly?
Step 1: 22 focus groups: separate focus groups for patients and caregivers, patients asked: In your opinion as a patient, what are the most important areas of research to improve spiritual care? What do you think would really improve the quality of spiritual care or help to better meet your needs?, caregivers asked: In your opinion as a caregiver, what are the most important areas of research to improve spiritual care? What do you think would really improve the quality of spiritual care or help better meet your needs?. Step 2: data processing: thematic analysis
Which stakeholders took part?
Patients having an incurable, progressive disease and being an adult, caregivers as adults with experience of caring for someone with incurable, progressive disease. 175 participants: 74 patients, 71 caregivers.
How were stakeholders recruited?
Purposive sampling to ensure diversity in diagnoses, age, gender and religion/beliefs where possible was used. Participants were recruited via one of the clinicians at the site introducing the study, with follow up b the researcher; via posters displayed in participating sites.
Were stakeholders actively involved or did they just participate?
Stakeholders were mere participants of the research prioritization process; they were not actively involved in the process.