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Residents' and family members' perceptions of care quality and self-determination in palliative phase in residential care

RAMONA SCHENELL, R. N. ; ANNELI OZANNE, R. N. ; SUSANN STRANG, R. N. ; INGELA HENOCH, R. N.
Palliative and supportive care, 29/04/2019, p. 1-13

Thème : Soins.

PHASE PALLIATIVE ; MAISON RETRAITE ; PERSONNE AGEE ; QUESTIONNAIRE

OBJECTIVE: Dependency on others can compromise self-determination for older persons in the palliative phase in residential care. Family members can support the residents' self-determination but may also jeopardize it. Quality of care (QoC) is linked to respecting the autonomy of the residents and providing opportunities to participate in decision-making. The aim of the study was to provide knowledge about residents' and family members' perceptions of QoC and self-determination and to detect possible differences between their experiences.
METHOD: This cross-sectional study used an abbreviated version of the questionnaire, Quality from the Patients' Perspective, with additional items about decision-making. Wilcoxon's signed rank test was used to analyze the perception of QoC and to detect differences between residents' and family members' perceptions.
RESULT: QoC was perceived as lower than preferred in the majority of items and there was a high level of agreement between residents and family members. Lowest mean values in QoC were found in: support when feeling lonely; support when feeling worry, anxiety or fear; and staff's time to talk to the residents. Decision-making in everyday life and in life-changing situations showed that neither residents nor family members trusted staff to know about the residents' preferences.
SIGNIFICANCE OF RESULTS: Broad improvements are needed, especially in psychosocial care. Several of the negative outcomes on QoC and self-determination seem to derive from a focus on practical tasks and the lack of trustful relationships between residents and staff. An early implementation of palliative care, with a focus on what brings quality to each resident's life, could facilitate QoC and self-determination, in both everyday life and at the end of life.

Origine : PubMed