Hostname: page-component-cd9895bd7-mkpzs Total loading time: 0 Render date: 2024-12-27T07:00:39.337Z Has data issue: false hasContentIssue false
  • English
  • Français

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

Published online by Cambridge University Press:  21 September 2017

Lucy Holkham  and
Andy Soundy
Lucy Holkham*
Affiliation:
School of Sport, Exercise, and Rehabilitation Sciences, University of Birmingham, Birmingham, United Kingdom
Andy Soundy
Affiliation:
School of Sport, Exercise, and Rehabilitation Sciences, University of Birmingham, Birmingham, United Kingdom
*
Address correspondence and reprint requests to: Lucy Holkham, School of Sport Exercise and Rehabilitation Sciences, University of Birmingham, Birmingham, West Midlands, B15 2TT. E-mail: lrh388@alumni.bham.ac.uk.
Get access Rights & Permissions [Opens in a new window]

Abstract

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.

Keywords

CaregiversMotor neurone diseaseQualitative researchExperience
Type
Review Article
Information
Palliative & Supportive Care , Volume 16 , Special Issue 4: Topics in Bereavement , August 2018 , pp. 487 - 496
Copyright
Copyright © Cambridge University Press 2017 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Akiyama, M., Kayama, M., Takamura, S., et al. (2006). A study of the burden of caring for patients with amyotrophic lateral sclerosis (MND) in Japan. British Journal of Neuroscience Nursing, 2(1), 38–43.Google Scholar
Aoun, S. M., Connors, L., Priddis, L., et al. (2012). Motor neurone disease family carers' experiences of caring, palliative care and bereavement: An exploratory qualitative study. Palliative Medicine, 26(6), 842–850.Google Scholar
Aoun, S., Bentley, B., Funk, L., et al. (2013). A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions. Palliative Medicine, 27(5), 437–446.Google Scholar
Aria, L., Britten, N., Popay, J., et al. (2007). Identifying themes main or recurrent which can group concepts from studies together. Evidence & Policy, 3(3), 361–383.Google Scholar
Atkins, L., Brown, R. G., Leigh, P. N., et al. (2010). Marital relationships in amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis, 11(4), 344–350.Google Scholar
Brown, J. B. (2003). User, carer and professional experiences of care in motor neurone disease. Primary Health Care Research & Development, 4(3), 207–217.Google Scholar
Chio, A., Gauthier, A., Vignol, A., et al. (2006). Caregiver time use in ALS. Neurology, 67(5), 902–904.Google Scholar
Cooke, A., Smith, D. & Booth, A. (2012). Beyond PICO: The SPIDER tool for qualitative evidence synthesis. Qualitative Health Research, 22(10), 1435–1443.Google Scholar
Cote, L. & Turgeon, J. (2009). Appraising qualitative research articles in medicine and medical education. Medical Teacher, 27(1), 71–75.Google Scholar
Crellin, N. E., Orrell, M., McDermott, O., et al. (2014). Self-efficacy and health-related quality of life in family carers of people with dementia: A systematic review. Aging & Mental Health, 18(8), 954–969.Google Scholar
Eifert, E., Adams, R., Dudley, W., et al. (2015). Family caregiver identity: A literature review. American Journal of Health Education, 46(6), 357–367.Google Scholar
Fossey, E., Harvey, C., McDermott, F., et al. (2002). Understanding and evaluating qualitative research. The Australian and New Zealand Journal of Psychiatry, 36(6), 717–732.Google Scholar
Goldstein, L. N., Atkins, L., Landau, S., et al. (2006). Predictors of psychological distress in carers of people with amyotrophic lateral sclerosis: A longitudinal study. Psychological Medicine, 36(6), 865–875.Google Scholar
Herz, H., McKinnon, P. & Butow, P. (2006). Proof of love and other themes: A qualitative exploration of the experience of caring for people with motor neurone disease. Progress in Palliative Care, 14(5), 209–214.Google Scholar
Hewitt, M. (2007). How to Search and Critically Evaluate Research Literature. Nottingham, UK: The NIHR RDS for the East Midlands/Yorkshire and the Humber. Available from http://www.worcester.ac.uk/documents/6_Critically_evaluate_research_literature_2009v2.pdf.Google Scholar
Hyunjin, O. & Schepp, K. (2013). Wives becoming caregivers: The lived experiences of wives caring for amyotrophic lateral sclerosis patients. Journal of Hospice & Palliative Nursing, 15(4), 244–250.Google Scholar
Malpass, A., Shaw, A., Sharp, D., et al. (2009). “Medication career” or “moral career”? The two sides of managing antidepressants: A meta-ethnography of patients' experience of antidepressants. Social Science & Medicine, 68(1), 154–168.Google Scholar
McPherson, C., Wilson, K., Chyurlia, L., et al. (2011). The caregiving relationship and quality of life among partners of stroke survivors: A cross-sectional study. Health & Quality of Life Outcomes, 9, 29. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111340/.Google Scholar
Mitchell, J. & Borasio, G. (2007). Amyotrophic lateral sclerosis. Lancet, 369(9578), 2031–2041.Google Scholar
MND Association (2015). Motor Neurone Disease: A Guide for GPs and Primary Care Teams. Northampton: MND Association. Available from https://www.mndassociation.org/wp-content/uploads/px016-motor-neurone-disease-a-guide-for-gps-and-primary-care-teams.pdf.Google Scholar
MND Association (2016). Your Rights as a Carer. Northampton. MND Association. Available from https://www.mndassociation.org/wp-content/uploads/3-your-rights-as-a-carer.pdf.Google Scholar
Mockford, C., Jenkinson, C. & Fitzpatrick, R. (2006). A review: Carers, MND and service provision. Amyotrophic Lateral Sclerosis, 7(3), 132–141.Google Scholar
Moher, D., Liberati, A., Tetzlaff, J., et al. (2009). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. PLoS Medicine, 6(7), e1000097. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2707599/.Google Scholar
Murphy, V., Felgoise, S., Walsh, S., et al. (2009). Problem solving skills predict quality of life and psychological morbidity in ALS caregivers. Amyotrophic Lateral Sclerosis, 10(3), 147–153.Google Scholar
Nageshwaran, S. (2014). Motor Neurone Disease. BMJ, 349, g4052.Google Scholar
NICE (2016). Motor Neurone Disease: Assessment and Management. London: NICE. Available from http://www.nice.org.uk/guidance/ng42/chapter/Recommendations.Google Scholar
O'Brien, M., Whitehead, B., Jack, B., et al. (2012). The need for support services for family carers of people with motor neurone disease: Views of current and former family caregivers a qualitative study. Disability and Rehabilitation, 4(3), 247–256.Google Scholar
Oyebode, J., Smith, H. & Morrison, K. (2013). The personal experience of partners of individuals with motor neuron disease. Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration, 14(1), 39–43.Google Scholar
Peters, M., Jenkinson, C., Doll, H., et al. (2013). Carer quality of life and experiences of health services: A cross-sectional survey across three neurological conditions. Health and Quality of Life Outcomes, 11(1), 103–111.Google Scholar
Ray, R. & Street, A. (2007). Non-finite loss and emotional labour: Family caregivers' experiences of living with motor neurone disease. Journal of Clinical Nursing, 16(3), 35–43.Google Scholar
Rodgers, M., Sowden, A., Petticrew, M., et al. (2009). Testing methodological guidance on the conduct of narrative synthesis in systematic reviews. Evaluation, 15(1), 47–71. Available from https://www.lancaster.ac.uk/shm/research/nssr/research/dissemination/publications/Rodgers_et_al.pdf.Google Scholar
Sakellariou, D, Boniface, G. & Brown, P. (2013). Experiences of living with motor neurone disease a review of qualitative research. Disability and Rehabilitation, 35(21), 1765–1773.Google Scholar
Shaw, R., Booth, A., Sutton, J., et al. (2004). Finding qualitative research: An evaluation of search strategies. BMC Medical Research Methodology, 4, 5. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC385230/.Google Scholar
Sorrell, J. (2014). Moving beyond caregiver burden: Identifying helpful interventions for family caregivers. Journal of Psychosocial Nursing and Mental Health Services, 52(3), 15–18.Google Scholar
Soundy, A. & Condon, A. (2015). Patients' experiences of maintaining mental well-being and hope within motor neuron disease: A thematic synthesis. Frontiers in Psychology, 6, 606. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4428059/.Google Scholar
Soundy, A., Roskell, C., Elder, T., et al. (2016). The psychological process of adaptation and hope in patients with multiple sclerosis: A thematic synthesis. Open Journal of Therapy and Rehabilitation, 4(1), 22–47.Google Scholar
Thomas, J. & Harden, A. (2008). Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Medical Research Methodology, 8, 45. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2478656/.Google Scholar
Tong, A., Sainsbury, P. & Craig, J. (2007). Consolidated Criteria for Reporting Qualitative Research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19(6), 349–357.Google Scholar
Tong, A., Flemming, K., McInnes, E., et al. (2012). Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC Medical Research Methodology, 12, 181. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3552766/.Google Scholar
Weisser, F., Bristowe, K. & Jackson, D. (2015). Experiences of burden, needs, rewards and resilience in family caregivers of people living with motor neurone disease/amyotrophic lateral sclerosis: A secondary thematic analysis of qualitative interviews. Palliative Medicine, 29(8), 737–745.Google Scholar
Whitehead, B., O'Brien, M., Jack, B., et al. (2012). Experiences of dying, death and bereavement in motor neurone disease: A qualitative study. Palliative Medicine, 26(4), 368–378.Google Scholar
Wu, Y., Aylward, B., Roberts, M., et al. (2012). Searching the scientific literature: Implications for quantitative and qualitative reviews. Clinical Psychology Review, 32(6), 553–557.Google Scholar
Ybema, J., Kuijer, R., Hagedoorn, M., et al. (2002). Caregiver burnout amongst intimate partners of patients with a severe illness: An equity perspective. Personal Relationships, 9(1), 73–88.Google Scholar
Supplementary material: File

Holkham and Soundy supplementary material 1

Appendix

Download Holkham and Soundy supplementary material 1(File)
File 191.8 KB