Skip to main content Accessibility help
×
Home

Supporting wellbeing in motor neurone disease for patients, carers, social networks, and health professionals: A scoping review and synthesis

  • Melanie Harris (a1), Geoff Thomas (a2), Mary Thomas (a2), Paul Cafarella (a3), Allegra Stocks (a4), Julia Greig (a4) and R. Doug McEvoy (a1)...

Abstract

Objective:

Disease management in motor neurone disease (MND) is focused on preserving quality of life. However, the emphasis has so far been on physical symptoms and functioning and not psychosocial wellbeing. MND affects the wellbeing of carers, of family and social network members, and of healthcare providers, as well as of the patients. We therefore aimed to assess and synthesize the knowledge about maximizing MND-related psychosocial wellbeing across all these groups.

Method:

We used a systematic search and selection process to assess the scope of the literature along with a narrative synthesis of recent high-quality reviews.

Results:

The original studies were mainly observational studies of patients and, to a lesser extent, of carers. There were few interventional studies, mainly of patients. There were very few studies of any type on wellbeing in their wider social network or in healthcare professionals. All the review literature looked at MND patient or carer wellbeing, with some covering both. No reviews were found of wellbeing in other family members, patients' social networks, or their healthcare professionals. The reviews demonstrated wellbeing problems for patients linked to psychosocial issues. Carer wellbeing is also compromised. Psychotherapies, social supports, improved decision supports, and changes to healthcare delivery are among the suggested strategies for improved patient and carer wellbeing, but no proven interventions were identified for either. Early access to palliative care, also not well-tested but recommended, is poorly implemented.

Significance of results:

Work on interventions to deal with well-established wellbeing problems for patients and carers is now a research priority. Explicit use of current methods for patient and public involvement and for design and testing of interventions provide a toolkit for this research. Observational research is needed in other groups. There is a potential in considering needs across patients' social networks rather than looking individually at particular groups.

Copyright

Corresponding author

Address correspondence and reprint requests to: Melanie Harris, Adelaide Institute for Sleep Health, c/o Sleep Health Service, Repatriation General Hospital, C-Block, Daws Road, Daw Park, South Australia 5041, Australia. E-mail: melanie.harris@flinders.edu.au.

References

Hide All
Aoun, S.M., 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), 437446.
Bede, P., Oliver, D., Stodart, J., et al. (2011). Palliative care in amyotrophic lateral sclerosis: A review of current international guidelines and initiatives. Journal of Neurology, Neurosurgery, and Psychiatry, 82(4), 413418.
Bergin, S. & Mockford, C. (2016). Recommendations to support informal carers of people living with motor neurone disease. British Journal of Community Nursing, 21(10), 518524.
Bolmsjo, I. & Hermeren, G. (2001). Interviews with patients, family, and caregivers in amyotrophic lateral sclerosis: Comparing needs. Journal of Palliative Care, 17(4), 236240.
Brett, J., Staniszewska, S., Mockford, C., et al. (2014). Mapping the impact of patient and public involvement on health and social care research: A systematic review. Health Expectations, 17(5), 637650.
Calvo, V., Bianco, F., Benelli, E., et al. (2015). Impact on children of a parent with ALS: A case-control study. Frontiers in Psychology, 6, 288. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4362044/pdf/fpsyg-06-00288.pdf.
Carvalho, T.L., de Almeida, L.M., Lorega, C.M., et al. (2016). Depression and anxiety in individuals with amyotrophic lateral sclerosis: A systematic review. Trends in Psychiatry and Psychotherapy, 38(1), 15.
Cipolletta, S. & Amicucci, L. (2015). The family experience of living with a person with amyotrophic lateral sclerosis: A qualitative study. International Journal of Psychology, 50(4), 288294.
Clabburn, O. & O'Brien, M. (2015). Exploring the impact on young people who are caring and grieving for a parent with motor neurone disease. British Journal of Neuroscience Nursing, 11(5), 243248.
Craig, P., Dieppe, P., Macintyre, S., et al. (2008). Developing and evaluating complex interventions: The new Medical Research Council guidance. BMJ, 337, a1655. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2769032/.
Czajkowski, S.M., Powell, L.H., Adler, N., et al. (2015). From ideas to efficacy: The ORBIT model for developing behavioral treatments for chronic diseases. Health Psychology, 34(10), 971982.
Fegg, M.J., Kogler, M., Brandstatter, M., et al. (2010). Meaning in life in patients with amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis, 11(5), 469474.
Foley, G., O'Mahony, P. & Hardiman, O. (2007). Perceptions of quality of life in people with ALS: Effects of coping and health care. Amyotrophic Lateral Sclerosis, 8(3), 164169.
Foley, G., Timonen, V. & Hardiman, O. (2012). Patients' perceptions of services and preferences for care in amyotrophic lateral sclerosis: A review. Amyotrophic Lateral Sclerosis, 13(1), 1124.
Frank, L., Basch, E. & Selby, J.V. (2014). The PCORI perspective on patient-centered outcomes research. The Journal of the American Medical Association, 312(15), 15131514.
Gluyas, C., Mathers, S., Anderson, N.H., et al. (2016). Factors to consider for motor neurone disease carer intervention research: A narrative literature review. Palliative & Supportive Care: 19. Epub ahead of print Dec 20.
Gnanapragasam, S., Hopkins, C.W. & Moulton, C.D. (2016). Can pharmacotherapy improve depressive symptoms in patients with amyotrophic lateral sclerosis? A systematic review of the literature. Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration, 17(3–4), 289291.
Gould, R.L., Coulson, M.C., Brown, R.G., et al. (2015). Psychotherapy and pharmacotherapy interventions to reduce distress or improve well-being in people with amyotrophic lateral sclerosis: A systematic review. Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration, 16(5–6), 293302.
Hogden, A., Greenfield, D., Nugus, P., et al. (2012). What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives. Patient Preference and Adherence, 6, 829838. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3514070/pdf/ppa-6-829.pdf.
Hogden, A., Greenfield, D., Nugus, P., et al. (2013). What are the roles of carers in decision-making for amyotrophic lateral sclerosis multidisciplinary care? Patient Preference and Adherence, 7, 171181. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3589077/pdf/ppa-7-171.pdf.
Hogden, A., Greenfield, D., Nugus, P., et al. (2015). Development of a model to guide decision making in amyotrophic lateral sclerosis multidisciplinary care. Health Expectations, 18(5), 17691782.
Hogden, A., Greenfield, D., Caga, J., et al. (2016). Development of patient decision support tools for motor neuron disease using stakeholder consultation: A study protocol. BMJ Open, 6(4), e010532. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4823454/pdf/bmjopen-2015-010532.pdf.
Janssens, A.I., Ruytings, M., Al-Chalabi, A., et al. (2016). A mapping review of international guidance on the management and care of amyotrophic lateral sclerosis (ALS). Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration, 17(5–6), 325336.
Jetten, J., Haslam, C., Haslam, S.A., et al. (2014). How groups affect our health and well-being: The path from theory to policy. Social Issues and Policy Review, 8(1), 103130.
Lerum, S.V., Solbraekke, K.N., Holmoy, T., et al. (2015). Unstable terminality: Negotiating the meaning of chronicity and terminality in motor neurone disease. Sociology of Health & Illness, 37(1), 8196.
Mathis, S., Couratier, P., Julian, A., et al. (2016). Management and therapeutic perspectives in amyotrophic lateral sclerosis. Expert Review of Neurotherapeutics, 17(3), 263276.
McConigley, R., Aoun, S., Kristjanson, L., et al. (2012). Implementation and evaluation of an education program to guide palliative care for people with motor neurone disease. Palliative Medicine, 26(8), 9941000.
McConigley, R., Kristjanson, L.J., Aoun, S.M., et al. (2014). Staying just one step ahead: Providing care for patients with motor neurone disease. BMJ Supportive & Palliative Care, 4(1), 3842.
McLeod, J.E. & Clarke, D.M. (2007). A review of psychosocial aspects of motor neurone disease. Journal of the Neurological Sciences, 258(1–2), 410.
Mockford, C., Jenkinson, C. & Fitzpatrick, R. (2006). A review: Carers, MND and service provision. Amyotrophic Lateral Sclerosis, 7(3), 132141.
Möhler, R., Köpke, S. & Meyer, G. (2015). Criteria for reporting the development and evaluation of complex interventions in healthcare: Revised guideline (CReDECI 2). Trials, 16(1), 204. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4461976/pdf/13063_2015_Article_709.pdf.
Murray, L. & Butow, P.N. (2016). Advance care planning in motor neuron disease: A systematic review. Palliative & Supportive Care, 14(4), 411432.
Noble, B., Buckle, P. & Gadd, B. (2015). Service user and patient and public involvement in palliative and supportive care research. BMJ Supportive & Palliative Care, 5(5), 459460.
Oliver, D.J. & Turner, M.R. (2010). Some difficult decisions in ALS/MND. Amyotrophic Lateral Sclerosis, 11(4), 339343.
Oliver, D.J., Borasio, G., Caraceni, A., et al. (2016). A consensus review on the development of palliative care for patients with chronic and progressive neurological disease. European Journal of Neurology, 23(1), 3038.
Olsson Ozanne, A., Graneheim, U.H., Persson, L., et al. (2012). Factors that facilitate and hinder the manageability of living with amyotrophic lateral sclerosis in both patients and next of kin. Journal of Clinical Nursing, 21(9–10), 13641373.
Pagnini, F. (2013). Psychological wellbeing and quality of life in amyotrophic lateral sclerosis: A review. International Journal of Psychology, 48(3), 194205.
Rabbitte, M., Bates, U. & Keane, M. (2015). Psychological and psychotherapeutic approaches for people with motor neuron disease: A qualitative study. Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration, 16(5–6), 303308.
Sanchez-Reilly, S., Morrison, L.J., Carey, E., et al. (2013). Caring for oneself to care for others: Physicians and their self-care. The Journal of Supportive Oncology, 11(2), 7581.
Smith, K.P. & Christakis, N.A. (2008). Social networks and health. Annual Review of Sociology, 34, 405429.
Thoits, P.A. (2011). Mechanisms linking social ties and support to physical and mental health. Journal of Health and Social Behavior, 52(2), 145161.
Tong, A., Flemming, K., McInnes, E., et al. (2012). Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC Medical Research Methodology, 12(1), 181. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3552766/pdf/1471-2288-12-181.pdf.
Trail, M., Nelson, N.D., Van, J.N., et al. (2003). A study comparing patients with amyotrophic lateral sclerosis and their caregivers on measures of quality of life, depression, and their attitudes toward treatment options. Journal of the Neurological Sciences, 209(1–2), 7985.
Trail, M., Nelson, N., Van, J.N., et al. (2004). Major stressors facing patients with amyotrophic lateral sclerosis (ALS): A survey to identify their concerns and to compare with those of their caregivers. Amyotrophic Lateral Sclerosis & Other Motor Neuron Disorders, 5(1), 4045.
van Groenestijn, A.C., Kruitwagen-van Reenen, E.T., Visser-Meily, J.M., et al. (2016). Associations between psychological factors and health-related quality of life and global quality of life in patients with ALS: A systematic review. Health and Quality of Life Outcomes, 14(1), 107. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4955215/pdf/12955_2016_Article_507.pdf.
Vassilev, I., Rogers, A., Kennedy, A., et al. (2014). The influence of social networks on self-management support: A metasynthesis. BMC Public Health, 14(1), 719. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4223639/pdf/1471-2458-14-719.pdf.

Keywords

Type Description Title
WORD
Supplementary materials

Harris et al supplementary material
Appendices 1-4

 Word (37 KB)
37 KB

Metrics

Altmetric attention score

Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed