Abstract
PurposeThe availability of psychosocial support measures has a significant impact on the quality of life of terminally ill and dying patients and the burden experienced by their relatives. To date, no intervention has specifically focused on promoting interaction within the dyads of the following: (1) terminally ill adult children and their parents and (2) terminally ill parents and their adult children. A national Delphi study was conducted to provide appropriate recommendations for dyadic psychosocial support measures.MethodsRecommendations were formulated from qualitative interview data on the experiences and wishes of patients and family caregivers within these two dyads. Experts from palliative and hospice care providers rated the relevance and feasibility of 21 recommendations on two 4-point Likert-type scales, respectively. Additional suggestions for improvement were captured via free text fields. Individual items were considered consented when ≥ 80% of participants scored 1 (strongly agree) or 2 (somewhat agree) regarding both relevance and feasibility.ResultsA total of 27 experts (35% response rate) completed two Delphi rounds. Following the first round, 13 recommendations were adjusted according to participants’ comments. After the second round, consensus was achieved for all 21 of the initially presented recommendations.ConclusionThe Delphi-consented recommendations for parents and adult children at the end of life provide the first guidance for hands-on dyadic psychosocial support measures for parent–adult child relationships, specifically. The next step could involve the structured implementation of the recommendations, accompanied by scientific research.This study was registered on October 27, 2017, with the German Clinical Trials Register (DRKS00013206).
Highlights
IntroductionThe number of people facing terminal illness with a limited life span is increasing
Introduction and backgroundIn our aging society, the number of people facing terminal illness with a limited life span is increasing
Parents are increasingly faced with the challenge of caring for an adult child with terminal illness; likewise, adult children are continuing to cope with the limited life span of their aging parents
Summary
The number of people facing terminal illness with a limited life span is increasing. Parents are increasingly faced with the challenge of caring for an adult child with terminal illness; likewise, adult children are continuing to cope with the limited life span of their aging parents. In the context of terminal illness, both the family setting and the interaction between It is necessary to develop supportive interventions tailored to specific populations [1, 7]
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