The experience of informal caregivers of patients with motor neurone disease: A thematic synthesis

OBJECTIVE: Research is required in order to illustrate and detail the experiences of informal caregivers of patients with motor neurone disease (pwMND) to further advance the research base and to inform the development of future support structures and services. Due to the heterogeneous nature of caregiving for pwMND, one way in which this can be achieved is through a qualitative review. A qualitative thematic analysis of existing qualitative studies has not, to the best of the authors' knowledge, been previously undertaken. Thus, the present synthesis aims to identify caregivers' experiences and to suggest factors that contribute to these experiences in order to fulfill the required research needs.

METHOD: A thematic synthesis of qualitative literature was conducted. AMED, Medline, SPORTDiscus, CINAHL, and PubMed were electronically searched from inception until September of 2015. Studies were eligible if they included qualitative literature reporting on firsthand experience of informal caregivers of patients with MND, were published in English, and contained verbatim quotations. Critical appraisal was undertaken using a 13-item consolidated criteria for reporting qualitative studies (COREQ) checklist.

RESULTS: A total of 10 studies met the inclusion criteria, with 148 (50 male) current or previous informal caregivers of pwMND identified. Critical appraisal demonstrated that study design and reflexivity were underreported. The synthesis derived three themes: (1) loss of control, (2) inability to choose, and (3) isolation.

SIGNIFICANCE OF RESULTS: The synthesis highlighted the factors that contribute to both positive and negative caregiving experiences. Through these experiences, such suggestions for service provision as improving communication with healthcare professionals and having a single point of contact emerged. However, the outcome of such suggestions on the experience of caregivers is beyond the scope of our synthesis, so that further research is required.