Hostname: page-component-7c8c6479df-xxrs7 Total loading time: 0 Render date: 2024-03-19T01:50:46.672Z Has data issue: false hasContentIssue false

Interventions targeting psychological well-being for motor neuron disease carers: A systematic review

Published online by Cambridge University Press:  15 March 2022

Paul Cafarella*
Affiliation:
School of Psychology, Faculty of Health and Medical Sciences, University of Adelaide, South Australia, Australia Department of Respiratory Medicine, Flinders Medical Centre, Southern Adelaide Local Health Network, South Australia, Australia College of Nursing and Health Sciences, Flinders University of South Australia, Adelaide, Australia College of Medicine and Public Health, Flinders University of South Australia, Adelaide, Australia
Tanja Effing
Affiliation:
School of Psychology, Faculty of Health and Medical Sciences, University of Adelaide, South Australia, Australia College of Medicine and Public Health, Flinders University of South Australia, Adelaide, Australia
Anna Chur-Hansen
Affiliation:
School of Psychology, Faculty of Health and Medical Sciences, University of Adelaide, South Australia, Australia
*
Author for correspondence: Paul Cafarella, Department of Respiratory Medicine, Flinders Medical Centre, Bedford Park, South Australia 5042, Australia. E-mail: paul.cafarella@sa.gov.au

Abstract

Objectives

This systematic review considers interventions designed to improve the psychological well-being (PWB) of carers of people with motor neuron disease (MND) using quantitative, qualitative, or mixed-methods studies, and aimed to (1) summarize current research, (2) assess the quality of evidence, and (3) evaluate the effectiveness of interventions.

Method

Mixed-methods systematic review (MMSR) was conducted based on Joanna Briggs Institute methodology for quantitative, qualitative, and mixed-methods reviews and Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.

Results

Thirteen papers met the inclusion criteria, including 12 studies (six mixed-methods, four quantitative, and two qualitative). Four studies described randomized controlled trials, seven detailed uncontrolled longitudinal studies with a single treatment group and a pre-post design, and one was an observational survey. Critical appraisal of the studies revealed a wide range of weaknesses in the quantitative and/or qualitative methodologies. Due to the heterogeneity of interventions, outcomes, and measurements, a narrative and convergent approach to data synthesis was employed. While a minority of studies demonstrated some benefits to hedonic and eudaimonic aspects of PWB, the interpretability of these data was limited by methodological problems.

Significance of results

This MMSR highlighted a paucity of quality research regarding interventions for the PWB of MND carers. Although some benefits to PWB were demonstrated, most studies suffered from substantial methodological problems, rendering the overall evidence base low. High-quality and carefully designed studies are a priority to enable effective development and testing of much-needed interventions targeting the PWB for MND carers.

Type
Review Article
Copyright
© The Author(s), 2022. Published by Cambridge University Press

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

Akobeng, AK (2005) Understanding randomised controlled trials. Archives of Disease in Childhood 90(8), 840844. doi:10.1136/adc.2004.058222CrossRefGoogle Scholar
Aoun, SM, Connors, SL, 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), 842850. doi:10.1177/0269216311416036CrossRefGoogle ScholarPubMed
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), 437446. doi:10.1177/0269216312455729CrossRefGoogle ScholarPubMed
Aoun, SM, Deas, K, Kristjanson, LJ, et al. (2017) Identifying and addressing the support needs of family caregivers of people with motor neurone disease using the Carer Support Needs Assessment Tool. Palliative & Supportive Care 15(1), 3243. doi:10.1017/S1478951516000341CrossRefGoogle ScholarPubMed
Aoun, S, Hogden, A and Kho, L (2018) “Until there is a cure, there is care”: A person-centered approach to supporting the wellbeing of people with Motor Neurone Disease and their family carers. European Journal for Person Centered Healthcare 6(2), 320328. doi:10.5750/ejpch.v6i2.1488CrossRefGoogle Scholar
Aoun, SM, Kissane, DW, Cafarella, PA, et al. (2020a) Grief, depression, and anxiety in bereaved caregivers of people with motor neurone disease: A population-based national study. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 21(7–8), 593605. doi:10.1080/21678421.2020.1790610CrossRefGoogle ScholarPubMed
Aoun, SM, Cafarella, PA, Rumbold, B, et al. (2020b) Who cares for the bereaved? A national survey of family caregivers of people with motor neurone disease. Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration 22(1–2), 1222. doi:10.1080/21678421.2020.1813780CrossRefGoogle ScholarPubMed
Aoun, S, Cafarella, P, Hogden, A, et al. (2021) Why and how the work of Motor Neurone Disease Associations matters before and during bereavement: A consumer perspective. Palliative Care and Social Practice 15, 263235242110095. doi:10.1177/26323524211009537CrossRefGoogle ScholarPubMed
Aromataris, E and Munn, Z (eds) (2020) JBI Manual for Evidence Synthesis. The Joanna Briggs Institute. https://synthesismanual.jbi.global. doi:10.46658/JBIMES-20-01Google Scholar
Bentley, B, O'Connor, M, Kane, R, et al. (2014) Feasibility, acceptability, and potential effectiveness of dignity therapy for people with motor neurone disease. PLoS One 9(5), e96888. doi:10.1371/journal.pone.0096888CrossRefGoogle ScholarPubMed
Boutron, I, Guittet, L, Estellat, C, et al. (2007) Reporting methods of blinding in randomized trials assessing nonpharmacological treatments. PLoS Medicine 4(2), e61. doi:10.1371/journal.pmed.0040061CrossRefGoogle ScholarPubMed
Burke, T, , O, Pinto-Grau, M, et al. (2018) Longitudinal predictors of caregiver burden in amyotrophic lateral sclerosis: a population-based cohort of patient–caregiver dyads. J Neurol 265, 793808. doi:10.1007/s00415-018-8770-6.CrossRefGoogle ScholarPubMed
Cipolletta, S, Gammino, GR, Francescon, P, et al. (2018) Mutual support groups for family caregivers of people with amyotrophic lateral sclerosis in Italy: A pilot study. Health & Social Care in the Community 26(4), 556563. doi:10.1111/hsc.12558CrossRefGoogle ScholarPubMed
Creemers, H, Veldink, JH, Grupstra, H, et al. (2014) Cluster RCT of case management on patients’ quality of life and caregiver strain in ALS. Neurology 82(1), 2331. doi:10.1212/01.wnl.0000438227.48470.62CrossRefGoogle ScholarPubMed
Creemers, H, de Morée, S, Veldink, JH, et al. (2016) Factors related to caregiver strain in ALS: A longitudinal study. Journal of Neurology, Neurosurgery, and Psychiatry 87(7), 775781. doi:10.1136/jnnp-2015-311651CrossRefGoogle ScholarPubMed
de Almeida, F, do Carmo Santana, A and de Carvalho, F (2021) Multidisciplinary care in Amyotrophic Lateral Sclerosis: A systematic review and meta-analysis. Neurological Sciences 42(3), 911923. doi:10.1007/s10072-020-05011-2CrossRefGoogle ScholarPubMed
de Wit, J, Vervoort, S, van Eerden, E, et al. (2019) User perspectives on a psychosocial blended support program for partners of patients with amyotrophic lateral sclerosis and progressive muscular atrophy: A qualitative study. BMC Psychology 7(1), 35. doi:10.1186/s40359-019-0308-xCrossRefGoogle ScholarPubMed
de Wit, J, Beelen, A, Drossaert, C, et al. (2020) Blended psychosocial support for partners of patients with ALS and PMA: Results of a randomized controlled trial. Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration 21(5–6), 344354. doi:10.1080/21678421.2020.1757114CrossRefGoogle ScholarPubMed
Diener, E (2000) Subjective well-being. The science of happiness and a proposal for a national index. The American Psychologist 55(1), 3443. doi:10.1037/0003-066X.55.1.34CrossRefGoogle Scholar
Dodge, R, Daly, AP, Huyton, J, et al. (2012) The challenge of defining wellbeing. International Journal of Wellbeing 2(3), 222235. doi:10.5502/ijw.v2i3.4CrossRefGoogle Scholar
Falconier, M and Kuhn, R (2019) Dyadic coping in couples: A conceptual integration and a review of the empirical literature. Frontiers in Psychology 10, 571. doi:10.3389/fpsyg.2019.00571CrossRefGoogle Scholar
Fava, GA and Ruini, C (2003) Development and characteristics of a well-being enhancing psychotherapeutic strategy: Well-being therapy. Journal of Behavior Therapy and Experimental Psychiatry 34(1), 4563. doi:10.1016/s0005-7916(03)00019-3CrossRefGoogle ScholarPubMed
Furlan, AD, Pennick, V, Bombardier, C, et al. (2009) 2009 updated method guidelines for systematic reviews in the Cochrane Back Review Group. Spine 34(18), 19291941. doi:10.1097/BRS.0b013e3181b1c99fCrossRefGoogle ScholarPubMed
Gluyas, C, Mathers, S, Hennessy Anderson, N, et al. (2017) Factors to consider for motor neurone disease carer intervention research: A narrative literature review. Palliative & Supportive Care 15(5), 600608. doi:10.1017/S1478951516000912.CrossRefGoogle ScholarPubMed
Gupta, S (2011) Intention-to-treat concept: A review. Perspectives in Clinical Research 2(3), 109. doi:10.4103/2229-3485.83221CrossRefGoogle ScholarPubMed
Hammarberg, K, Kirkman, M and de Lacey, S (2016) Qualitative research methods: When to use them and how to judge them. Human Reproduction (Oxford, England) 31(3), 498501. doi:10.1093/humrep/dev334CrossRefGoogle Scholar
Harris, M, Thomas, G, Thomas, M, et al. (2018) Supporting wellbeing in motor neurone disease for patients, carers, social networks, and health professionals: A scoping review and synthesis. Palliative & Supportive Care 16(2), 228237. doi:10.1017/S1478951517000700CrossRefGoogle ScholarPubMed
Kahlert, J, Gribsholt, S, Gammelager, H, et al. (2017) Control of confounding in the analysis phase — An overview for clinicians. Clinical Epidemiology 9, 195204. doi:10.2147/clep.s129886CrossRefGoogle ScholarPubMed
Kavanaugh, MS, Cho, Y, Fee, D, et al. (2020) Skill, confidence and support: Conceptual elements of a child/youth caregiver training program in amyotrophic lateral sclerosis — The YCare protocol. Neurodegenerative Disease Management 10(4), 231241. doi:10.2217/nmt-2020-0004CrossRefGoogle ScholarPubMed
Kukull, WA and Ganguli, M (2012) Generalizability: The trees, the forest, and the low-hanging fruit. Neurology 78(23), 18861891. doi:10.1212/WNL.0b013e318258f812CrossRefGoogle ScholarPubMed
Marconi, A, Gragnano, G, Lunetta, C, et al. (2016) The experience of meditation for people with amyotrophic lateral sclerosis and their caregivers — A qualitative analysis. Psychology, Health & Medicine 21(6), 762768. doi:10.1080/13548506.2015.1115110CrossRefGoogle ScholarPubMed
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. doi:10.1371/journal.pmed.1000097CrossRefGoogle ScholarPubMed
O'Cathain, A, Croot, L, Sworn, K, et al. (2019) Taxonomy of approaches to developing interventions to improve health: A systematic methods overview. Pilot and Feasibility Studies 5(41). doi:10.1186/s40814-019-0425-6Google Scholar
Pagnini, F, Phillips, D, Haulman, A, et al. (2021) An online non-meditative mindfulness intervention for people with ALS and their caregivers: A randomized controlled trial. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 112. doi:10.1080/21678421.2021.1928707Google ScholarPubMed
Patton, MQ (2015) Qualitative Research and Evaluation Methods, 4th ed. Newbury Park, CA: Sage.Google Scholar
Poppe, C, Koné, I, Iseli, L, et al. (2020) Differentiating needs of informal caregivers of individuals with ALS across the caregiving course: A systematic review. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 21(7–8), 519541. doi:10.1080/21678421.2020.1771735CrossRefGoogle ScholarPubMed
Ryff, CD and Keyes, CLM (1995) The structure of psychological well-being revisited. Journal of Personality and Social Psychology 69, 719727. doi:10.1037/0022-3514.69.4.719CrossRefGoogle ScholarPubMed
Sauer-Zavala, S, Cassiello-Robbins, C, Ametaj, AA, et al. (2019) Transdiagnostic treatment personalization: The feasibility of ordering unified protocol modules according to patient strengths and weaknesses. Behavior Modification 43(4), 518543. doi:10.1177/0145445518774914CrossRefGoogle ScholarPubMed
Schulz, KF and Grimes, DA (2002) Sample size slippages in randomised trials: Exclusions and the lost and wayward. Lancet (London, England) 359(9308), 781785. doi:10.1016/S0140-6736(02)07882-0CrossRefGoogle ScholarPubMed
Steinhauser, KE, Olsen, A, Johnson, KS, et al. (2016) The feasibility and acceptability of a chaplain-led intervention for caregivers of seriously ill patients: A Caregiver Outlook pilot study. Palliative & Supportive Care 14(5), 456467. doi:10.1017/S1478951515001248CrossRefGoogle ScholarPubMed
Stern, C, Lizarondo, L, Carrier, J, et al. (2020) Methodological guidance for the conduct of mixed methods systematic reviews. JBI Evidence Synthesis 18(10), 21082118. doi:10.11124/JBISRIR-D-19-00169CrossRefGoogle ScholarPubMed
Ugalde, A, Mathers, S, Hennessy Anderson, N, et al. (2018) A self-care, problem-solving and mindfulness intervention for informal caregivers of people with motor neurone disease: A pilot study. Palliative Medicine 32(4), 726732. doi:10.1177/0269216317743434CrossRefGoogle Scholar
van Groenestijn, A, Schröder, C, Visser-Meily, J, et al. (2015) Cognitive behavioural therapy and quality of life in psychologically distressed patients with amyotrophic lateral sclerosis and their caregivers: Results of a prematurely stopped randomized controlled trial. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 16(5–6), 309315. doi:10.3109/21678421.2015.1038276CrossRefGoogle ScholarPubMed
Vazquez, C, Hervas, G, Rahona, JJ, et al. (2009) Psychological well-being and health: Contributions of positive psychology. Annuary of Clinical and Health Psychology 5, 1527.Google Scholar
Yan, H, Karmur, B and Kulkarni, A (2020) Comparing effects of treatment: Controlling for confounding. Neurosurgery 86(3), 325331. doi:10.1093/neuros/nyz509CrossRefGoogle ScholarPubMed
Supplementary material: File

Cafarella et al. supplementary material

Cafarella et al. supplementary material

Download Cafarella et al. supplementary material(File)
File 32.8 KB