The impact of prolonged disorders of consciousness on family caregivers’ quality of life – A scoping review

ABSTRACT

Providing long-term care for a family member diagnosed with a Prolonged Disorder of Consciousness (PDoC) can have a significant impact on the lives of family caregivers. This scoping review aimed to explore the current literature investigating the impact of caring for a person in a PDoC on family caregivers’ Quality of Life (QOL), as categorized using the WHOQOL-BREF model. We observed that articles employing quantitative methodologies mostly reported QOL outcomes relating to negative feelings, thinking, learning, memory and concentration, and personal relationships. Articles employing qualitative methodologies mostly reported QOL outcomes relating to negative feelings, personal relationships, positive feelings, and health and social care accessibility and quality. A descriptive content analysis of the QOL outcomes highlighted the limitations of the current literature base in representing the complexities of the experiences of family members providing care for a person in a PDoC. To provide valuable and personalized support to caregivers, without pathologizing or medicalizing their distress, it is vital to characterize more accurately the contextual subtleties of each person’s situation.

KEYWORDS:

• Disorders of consciousness
• Family
• Caregiver
• Quality of life
• Scoping review

Acknowledgements

We thank the University of Birmingham Clinical Psychology MRes team for their support and feedback on this project.

Disclosure statement

)In accordance with Taylor & Francis policy, we report that the research reported in this paper was submitted as a part of the lead author’s thesis for the degree of Master of Research at the University of Birmingham.

Notes

1 A. Two articles including professional caregivers in their cohorts were accepted for inclusion in this review as the focus was deemed to be sufficiently on the impact of PDoC on family caregivers to meet the inclusion criteria.

Additional information

Funding

This study was supported by the Medical Research Council (reference: MR/P013228/1) who had no role in the design, collection, analysis, and interpretation of data for this review, or writing and submission of this paper for publication.