The long-term unmet needs of informal carers of stroke survivors at home: a systematic review of qualitative and quantitative studies

Abstract

Aim

To synthesise research describing the long-term unmet needs of carers who are providing care to a stroke survivor at home who is at least 3 months post-discharge.

Methods

A systematic review with a narrative synthesis of the English-language qualitative and quantitative studies identified from MEDLINE, CINAHL, PsycINFO, EMBASE, AMED, and Scopus was undertaken.

Results

Five quantitative studies, seven qualitative studies, and one mixed-method study were included in the review. Five themes of unmet needs were identified from the synthesis: (1) Obtaining adequate information, (2) Taking care of oneself, (3) Service accessibility, (4) Emotional and psychological, and (5) Relationship. Commonly reported needs across the 13 final studies included the need for support from health care and/or service providers, help with self-care, and help with coping and managing emotions. Variables associated with unmet needs included the severity of the stroke that the stroke survivor experienced and the length of hospital stay.

Conclusions

Evidence from this review suggests that carers are experiencing a range of long-term unmet needs, particularly in education and training, coping and managing their own emotions, and accessing much-needed services. Recommendations to support carers at home include continuing engagement, assessment, and support from health care providers and services to meet the needs of carers throughout the stroke recovery process.

IMPLICATIONS FOR REHABILITATION

• Carers of stroke survivors experience complex long-term unmet needs around managing the recovery process of the stroke survivor when they have been discharged from hospital and returned home.

• Evidence suggests that continuing engagement and support from health care providers and services may assist carers in meeting their unmet needs.

• Healthcare professionals should provide help in accessing training and services.

• Support is required to help carers cope and to manage their emotions.

Keywords:

• Carers
• caregivers
• stroke
• needs
• systematic review

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The scholarship of AMJD is supported by a Research Training Program (RTP), University of Newcastle PhD Scholarship and Hunter Medical Research Institute/Emlyn and Jennie Thomas Postgraduate Medical Research Scholarship. ALB is supported by a National Health and Medical Research Council (NHMRC) Senior Research Fellowship Grant and Brawn in full is Gladys Brawn Memorial Fellowship, Faculty of Health and Medicine, University of Newcastle. NJS is supported by an investigator who was the recipient of a co-funded National Health and Medical Research Council/National Heart Foundation Career Development/Future Leader Fellowship [APPS1110629/100827]. BB is supported by the University of Newcastle.