Hostname: page-component-78c5997874-lj6df Total loading time: 0 Render date: 2024-11-08T05:34:38.636Z Has data issue: false hasContentIssue false
  • English
  • Français

Support needs of caregivers of patients with amyotrophic lateral sclerosis: A qualitative study

Published online by Cambridge University Press:  05 February 2018

Jessica de Wit Open the ORCID record for Jessica de Wit [Opens in a new window] ,
Carin D. Schröder ,
Julia el Mecky ,
Anita Beelen ,
Leonard H. van den Berg  and
Johanna M. A. Visser-Meily
Jessica de Wit
Affiliation:
Center of Excellence in Rehabilitation Medicine, Brain Center Rudolf Magnus, University Medical Center Utrecht, and De Hoogstraat Rehabilitation, Utrecht, The Netherlands
Carin D. Schröder*
Affiliation:
Center of Excellence in Rehabilitation Medicine, Brain Center Rudolf Magnus, University Medical Center Utrecht, and De Hoogstraat Rehabilitation, Utrecht, The Netherlands Department of Rehabilitation, Physical Therapy Science & Sports, Brain Center Rudolf Magnus, University Medical Center Utrecht, The Netherlands
Julia el Mecky
Affiliation:
Department of Clinical Genetics, University Medical Center Groningen, Groningen, The Netherlands Department of Clinical Ethics & Law, University of Southampton, Southampton, United Kingdom
Anita Beelen
Affiliation:
Department of Rehabilitation, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
Leonard H. van den Berg
Affiliation:
Department of Neurology, Brain Center Rudolf Magnus, University Medical Center Utrecht, Utrecht, The Netherlands
Johanna M. A. Visser-Meily
Affiliation:
Center of Excellence in Rehabilitation Medicine, Brain Center Rudolf Magnus, University Medical Center Utrecht, and De Hoogstraat Rehabilitation, Utrecht, The Netherlands Department of Rehabilitation, Physical Therapy Science & Sports, Brain Center Rudolf Magnus, University Medical Center Utrecht, The Netherlands
*
Author for correspondence: Carin Schröder, Department of Rehabilitation, Physical Therapy Science & Sports, University Medical Center Utrecht, Heidelberglaan 100, 3584 CX Utrecht, The Netherlands. Email: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective

The aim of this study was to explore the support needs of Dutch informal caregivers of patients with amyotrophic lateral sclerosis (ALS).

Method

Individual semi-structured interviews were conducted with 21 caregivers of ALS patients. Audio-taped interviews were transcribed and data were analyzed thematically.

Result

A total of four global support needs emerged: “more personal time”, “assistance in applying for resources”, “counseling”, and “peer contact”. Despite their needs, caregivers are reluctant to apply for and accept support. They saw their own needs as secondary to the needs of the patients.

Significance of results

ALS seems to lead to an intensive caregiving situation with multiple needs emerging in a short period. This study offers targets for the development of supportive interventions. A proactive approach seems essential, acknowledging the importance of the role of the caregivers in the care process at an early stage, informing them about the risk of burden, monitoring their wellbeing, and repeatedly offering support opportunities. Using e-health may help tailor interventions to the caregivers’ support needs.

Keywords

Amyotrophic lateral sclerosisinformal caregiversupport needsqualitative researchcaregiving
Type
Original Article
Information
Palliative & Supportive Care , Volume 17 , Issue 2 , April 2019 , pp. 195 - 201
Copyright
Copyright © Cambridge University Press 2018 

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

Anderson, NH, Gluyas, C, Mathers, S, et al. (2016) “A monster that lives in our lives”: Experiences of caregivers of people with motor neuron disease and identifying avenues for support. BMJ Supportive & Palliative Care Epub ahead of print April 28.Google Scholar
Aoun, SM, 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 Medicin, 27(5), 437–446.Google Scholar
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 & Psychiatry 82(4), 413–418.Google Scholar
Bergin, S and Mockford, C (2016) Recommendations to support informal carers of people living with motor neurone disease. British Journal of Community Nursing 21(10), 518–524.Google Scholar
Braun, V and Clarke, V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3(2), 77–101.Google Scholar
Bruletti, G, Comini, L, Scalvini, S, et al. (2015) A two-year longitudinal study on strain and needs in caregivers of advanced ALS patients. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 16(3-4), 187–195.Google Scholar
Cedarbaum, JM, Stambler, N, Malta, E, et al. (1999) The ALSFRS-R: A revised ALS functional rating scale that incorporates assessments of respiratory function. Journal of the Neurological Sciences 169(1–2), 13–21.Google Scholar
Chio, A, Gauthier, A, Vignola, A, et al. (2006) Caregiver time use in ALS. Neurology 67(5), 902–904.Google Scholar
Cipolletta, S and Amicucci, L (2015) The family experience of living with a person with amyotrophic lateral sclerosis: A qualitative study. International Journal of Psychology 50(4), 288–294.Google Scholar
Creswell, JW and Miller, DL (2000) Determining validity in qualitative inquiry. Theory into Practice 39(3), 124–130.Google Scholar
Foley, G, Timonen, V, and Hardiman, O (2012) Patients’ perceptions of services and preferences for care in amyotrophic lateral sclerosis: A review. Amyotrophic Lateral Sclerosis 13(1), 11–24.Google Scholar
Gauthier, A, Vignola, A, Calvo, A, et al. (2007) A longitudinal study on quality of life and depression in ALS patient-caregiver couples. Neurology 68(12), 923–926.Google Scholar
Goldstein, LH and Abrahams, S (2013) Changes in cognition and behaviour in amyotrophic lateral sclerosis: Nature of impairment and implications for assessment. Lancet Neurology 12(4), 368–380.Google Scholar
Goldstein, LH, 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
Guest, G, Bunce, A, and Johnson, L (2006) How many interviews are enough? An experiment with data saturation and variability. Field Methods 18(1), 59–82.Google Scholar
Hobson, EV, Fazal, S, Shaw, PJ, et al. (2017) “Anything that makes life's journey better.” Exploring the use of digital technology by people living with motor neurone disease. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 18(5–6), 1–10.Google Scholar
Larsson, BJ, Frojd, C, Nordin, K, et al. (2015) Relatives of patients with amyotrophic lateral sclerosis: Their experience of care and support. Palliative & Supportive Care 13(6), 1569–1577.Google Scholar
Lerum, SV, Solbraekke, KN, and Frich, JC (2016) Family caregivers’ accounts of caring for a family member with motor neurone disease in Norway: A qualitative study. BMC Palliative Care 15, 22.Google Scholar
Lillo, P, Mioshi, E, and Hodges, JR (2012) Caregiver burden in amyotrophic lateral sclerosis is more dependent on patients’ behavioral changes than physical disability: A comparative study. BMC Neurology 12, 156.Google Scholar
Locock, L and Brown, JB (2010) ‘All in the same boat’? Patient and carer attitudes to peer support and social comparison in Motor Neurone Disease (MND). Social Science & Medicine 71(8), 1498–1505.Google Scholar
Mast, ME (2013) To use or not to use. A literature review of factors that influence family caregivers’ use of support services. Journal of Gerontological Nursing 39(1), 20–28.Google Scholar
Merrilees, J, Klapper, J, Murphy, J, et al. (2010) Cognitive and behavioral challenges in caring for patients with frontotemporal dementia and amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis 11(3), 298–302.Google Scholar
Mioshi, E, Lillo, P, Kiernan, M, et al. (2012) Activities of daily living in motor neuron disease: Role of behavioural and motor changes. Journal of Clinical Neuroscience 19(4), 552–556.Google Scholar
Mitchell, JD and Borasio, GD (2007) Amyotrophic lateral sclerosis. Lancet 369(9578), 2031–2041.Google Scholar
Molloy, GJ, Johnston, DW, Johnston, M, et al. (2008) Using the demand-control model of job strain to predict caregiver burden and caregiver satisfaction in the informal caregivers of heart failure patients. British Journal of Health Psychology 13(3), 401–417.Google Scholar
NVivo Qualitative Data Analysis Software (2012) QSR International Pty Ltd, version 11.Google Scholar
O'Brien, BC, Harris, IB, Beckman, TJ, et al. (2014) Standards for reporting qualitative research: A synthesis of recommendations. Academic Medicine 89(9), 1245–1251.Google Scholar
O'Brien, MR, Whitehead, B, Jack, BA, et al. (2012) The need for support services for family carers of people with motor neurone disease (MND): Views of current and former family caregivers a qualitative study. Disability and Rehabilitation 34(3), 247–256.Google Scholar
Orbell, S and Gillies, B (1993). What's stressful about caring? Journal of Applied Social Psychology 23, 272–290.Google Scholar
Ozanne, AO, Graneheim, UH, 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), 1364–1373.Google Scholar
Peters, M, Fitzpatrick, R, Doll, H, et al. (2012) The impact of perceived lack of support provided by health and social care services to caregivers of people with motor neuron disease. Amyotrophic Lateral Sclerosis 13(2), 223–228.Google Scholar
Ray, RA and Street, AF (2007) Non-finite loss and emotional labour: Family caregivers’ experiences of living with motor neurone disease. Journal of Clinical Nursing 16(3A), 35–43.Google Scholar
Robinson, BC (1983) Validation of a Caregiver Strain Index. Journals of Gerontology 38(3), 344–348.Google Scholar
Robinson, KM, Buckwalter, KC, and Reed, D (2005) Predictors of use of services among dementia caregivers. Western Journal of Nursing Research 27(2), 126–140.Google Scholar
Van den Berg, JP, de Groot, IJ, Joha, BC, et al. (2004). Development and implementation of the Dutch protocol for rehabilitative management in amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders 5(4), 226–229.Google Scholar
Van den Berg, JP, Kalmijn, S, Lindeman, E, et al. (2005) Multidisciplinary ALS care improves quality of life in patients with ALS. Neurology 65(8), 1264–1267.Google Scholar
Van Teijlingen, ER, Friend, E, and Kamal, AD (2001) Service use and needs of people with motor neurone disease and their carers in Scotland. Health & Social Care in the Community 9(6), 397–403.Google Scholar
Waldron, EA, Janke, EA, Bechtel, CF, et al. (2013) A systematic review of psychosocial interventions to improve cancer caregiver quality of life. Psychooncology 22(6), 1200–1207.Google Scholar
Wasilewski, MB, Stinson, JN, and Cameron, JI (2017) Web-based health interventions for family caregivers of elderly individuals: A scoping review. International Journal of Medical Informatics 103, 109–138.Google Scholar
Weisser, FB, Bristowe, K, and 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
Supplementary material: File

De Wit et al. supplementary material 1

Appendix

Download De Wit et al. supplementary material 1(File)
File 19.7 KB