Transitions as experienced by persons in palliative care circumstances and their families – a qualitative meta-synthesis

Abstract

BackgroundWhen receiving palliative care, patients and their families experience altered life situations in which they must negotiate challenges in daily life, increased care and new roles. With limited time, they also experience emotional changes that relate to their uncertain future. Transitions experienced in such situations are often studied by focusing on individual aspects, which are synthesized in the following study. The aim was to conduct a qualitative meta-synthesis to explore the experiences patients and their families gain during transitions in palliative care circumstances.MethodsA qualitative meta-synthesis was conducted following an inductive approach as proposed by Sandelowski and Barroso. Inclusion criteria were studies with adult persons in palliative situations and articles published in English or German. Relevant articles were identified by researching the Pubmed and Cinahl databases, as well as by hand searches in journals and reference lists for the period 2000–2015. The findings of each study were analyzed using initial coding, followed by axial and selective coding in this order. Consequently, a conceptual model was derived from the categories.ResultsIn total 2225 articles were identified in the literature search. Finally, 14 studies were included after the selection process. The central phenomenon observed among palliative care patients and their families was maintaining normality during transitions. Transitions are initially experienced unconsciously until a crisis occurs and responsive actions are necessary, which encourages patients and families to perceive the situation consciously and develop strategies for its negotiation. Patients remain caught between hopelessness and valuing their remaining time alive. As the illness progresses, informal caregivers reprioritize and balance their roles, and after death, family members inevitably find themselves in changed roles.ConclusionsIn palliative care situations, transitions are experienced differently by patients and their families in a constant phenomenon that oscillates between unconscious and conscious perceptions of transitions. The derived conceptual model offers an additional perspective to existing models and helps to clarify the phenomenon in practical settings. The study promotes a differentiated conceptual view of transitions and emphasizes patients’ and families’ perspectives.

Silent voices: Family caregivers' narratives of involvement in palliative care

“…In our study, the caregivers talked about how difficult it was to be in the role of an “assistant” instead of the role of a close family member. Studies have reported that changing roles can be difficult for family caregivers involved in palliative care (Fringer et al, ). To handle multiple roles could lead to over‐exertion and these contradictory roles must be balanced (Fringer et al, ).…”

“…Studies have reported that changing roles can be difficult for family caregivers involved in palliative care (Fringer et al, ). To handle multiple roles could lead to over‐exertion and these contradictory roles must be balanced (Fringer et al, ). In our study, this need for balance was significant, especially when the patient rejected support offered by healthcare providers.…”

“…A meta‐synthesis (Fringer, Hechinger, & Schnepp, ) of studies from Europe, the United States and Canada showed that palliative patients and family caregivers wanted to maintain normality in their daily life. They experienced challenges dealing with their life situation and achieving balance in everyday life.…”

Co-construction of the Family-Focused Support Conversation: A Participatory Learning and Action Research Study to implement support for family members whose relatives are being discharged for end of life care at home or in a nursing home

“…End of life care transitions can be practically and emotionally difficult for family members 1 . They signify the certainty of impending death 2 and evoke many uncertainties about the future, including care after discharge 7 . Thus, care transitions are a 'critical time' during which family members need additional support and information 8 and present an opportunity for health and social care professionals to identify and respond to this need.…”

Comparison of the experience of caregiving at end of life or in hastened death: a narrative synthesis review

“…Multiple systematic reviews have examined the experiences and needs of end-of-life caregivers [3,[5][6][7][8][9][10][11][12]. Although many individual studies are rooted in conceptual or theoretical frameworks [13], few systematic reviews have them as an analytic structure: Broady [8] used personal construct psychology as the basis for framework analysis, and Morgan [10] conducted a feminist quality appraisal of gender in family caregiving.…”