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Feeling responsible : Family caregivers’ attitudes and experiences of shared decision-making regarding people diagnosed with schizophrenia : A qualitative study
Huang, Chongmei Lam, Louisa Lok Yi Plummer, Virginia Cross, Wendy
Huang, Chongmei
Lam, Louisa Lok Yi
Plummer, Virginia
Cross, Wendy
Abstract
Objective
To explore the attitudes and experiences of family caregivers concerning their involvement in shared decision-making regarding people diagnosed with schizophrenia.
Methods
This study used a qualitative descriptive design involving face-to-face semi-structured interviews. Both convenience and purposive sampling were used to recruit family caregivers until no new insights were generated (n = 15). An inductive thematic analysis method was used.
Results
Primary results of analysis of the attitudes and experiences included four main themes with nine subthemes generated from the data: (1) feeling obligated; (2) playing functional roles: i) providing social and financial support, ii) acting as a liaison, and iii) overviewing treatment adherence; (3) Experiencing multiple challenges i) limited treatment options, ii) insufficient information at health services iii) traditional acceptance of authoritative advice; and (4) living under pressure: i) feeling exhausted, ii) being socially isolated and iii) worrying about the future.
Conclusions
Due to their caregiving responsibilities, family caregivers facilitated shared decision-making in various ways. However, they perceived that their involvement was limited to practical tasks and attributed this to the lack of access and support for engagement, resulting in aggravated caregiving burden.
Practice implications
Family caregivers need to be recognized as partners and core stakeholders, to be involved in shared decision-making and better supported in caregiving. To achieve shared decision-making, decision aids are needed to support family caregivers for caregiving in collaborative care models.
Keywords
decision-making, family caregivers, family involvement, qualitative, schizophrenia, serious mental illness
Date
2021
Type
Journal article
Journal
Patient Education and Counseling
Book
Volume
104
Issue
7
Page Range
1553-1559
Article Number
ACU Department
School of Nursing, Midwifery and Paramedicine
Faculty of Health Sciences
Faculty of Health Sciences
Relation URI
Source URL
Event URL
Open Access Status
License
All rights reserved
File Access
Controlled