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

Volumn 29, Issue 8, 2015, Pages 737-745

  Weisser, Fabia B ^a   Bristowe, Katherine ^a   Jackson, Diana ^a  

^a KING'S COLLEGE LONDON   (United Kingdom)

Author keywords

burden; coping; family caregiver; Motor Neurone Disease Amyotrophic Lateral Sclerosis; needs; resilience; rewards; secondary thematic analysis

Indexed keywords

ADULT; AMBIVALENCE; AMYOTROPHIC LATERAL SCLEROSIS; ARTICLE; CAREGIVER BURDEN; CAREGIVER SUPPORT; CONTROLLED STUDY; COPING BEHAVIOR; GUILT; HUMAN; INFORMATION DISSEMINATION; LONGITUDINAL STUDY; MOTOR NEURON DISEASE; PATIENT ADVOCACY; PATIENT ATTITUDE; PATIENT CARE; PERSONAL EXPERIENCE; PSYCHOLOGICAL WELL BEING; QUALITATIVE ANALYSIS; RESPONSIBILITY; REWARD; SEMI STRUCTURED INTERVIEW; THEMATIC ANALYSIS; UNITED KINGDOM; ADAPTIVE BEHAVIOR; AGED; CAREGIVER; COST OF ILLNESS; FAMILY HEALTH; FEMALE; HEALTH SERVICE; MALE; MENTAL STRESS; MIDDLE AGED; NEEDS ASSESSMENT; NURSING; PSYCHOLOGY; QUALITATIVE RESEARCH; QUESTIONNAIRE; SOCIAL SUPPORT;

ADAPTATION, PSYCHOLOGICAL; ADULT; AGED; AMYOTROPHIC LATERAL SCLEROSIS; CAREGIVERS; COST OF ILLNESS; FAMILY HEALTH; FEMALE; HEALTH SERVICES NEEDS AND DEMAND; HUMANS; MALE; MIDDLE AGED; MOTOR NEURON DISEASE; NEEDS ASSESSMENT; QUALITATIVE RESEARCH; RESILIENCE, PSYCHOLOGICAL; REWARD; SOCIAL SUPPORT; STRESS, PSYCHOLOGICAL; SURVEYS AND QUESTIONNAIRES;

EID: 84939489623     PISSN: 02692163     EISSN: 1477030X     Source Type: Journal    
DOI: 10.1177/0269216315575851     Document Type: Article

References (38)

1. MND-Association. Symptoms of MND., http://www.mndassociation.org/what-is-mnd/symptoms (. accessed 30 December 2013).
2. Kiernan MC, Vucic S, Cheah BC,. Amyotrophic lateral sclerosis. Lancet 2011; 377: 942-955.
3. Talbot K,. Motor neuron disease: the bare essentials. Pract Neurol 2009; 9 (5): 303-309.
4. Mockford C, Jenkinson C, Fitzpatrick R,. A Review: carers, MND and service provision. Amyotroph Lateral Scler 2006; 7: 132-141.
5. Goldstein LH, Leigh PN,. Motor neurone disease: a review of its emotional and cognitive consequences for patients and its impact on carers. Br J Health Psychol 1999; 4: 193-208.
6. Aoun S, Bentley B, Funk L,. A 10-year literature review of family caregiving for motor neurone disease: moving from caregiver burden studies to palliative care interventions. Palliat Med 2013; 27: 437-446.
7. OBrien MR, Preston H,. Family carer perspectives of acute hospital care following a diagnosis of motor neuron disea se: a qualitative secondary analysis. BMJ Support Palliat Care. Epub ahead of print 28 2014. DOI: 10.1136/bmjspcare-2013-000627.
8. Ray RA, Brown J, Street AF,. Dying with motor neurone disease, what can we learn from family caregivers? Health Expect 2014; 17: 466-476.
9. Hogden A, Greenfield D, Nugus P,. What are the roles of carers in decision-making for amyotrophic lateral sclerosis multidisciplinary care? Patient Prefer Adherence 2013; 7: 171-181.
10. Rabkin J, Wagner G, Del Bene M,. Resilience and distress among amyotrophic lateral sclerosis patients and caregivers. Psychosom Med 2000; 62: 271-279.
11. Williams M, Donnelly J, Holmlund T,. ALS: family caregiver needs and quality of life. Amyotroph Lateral Scler 2008; 9: 279-286.
12. Herz H, McKinnon PM, Butow PN,. Proof of love and other themes: a qualitative exploration of the experience of caring for people with motor neurone disease. Progr Palliat Care 2006; 14: 209-214.
13. Department of Health. Carers (Recognition and Services) Act. London: The Stationery Office, 1995.
14. Department of Health. Caring about carers: a national strategy for carers. London: Department of Health, 1999.
15. Department of Health. Carers (Equal Opportunities) Act. London: The Sttionery Office, 2004.
16. Department of Health. Carers at the heart of 21st century families and communities: a caring system on your side, a life of your own. London: Department of Health, 2008.
17. Department of Health. Carers and personalisation: improving outcomes. London: Department of Health, 2010.
18. Department of Health. Recognised, valued and supported: next steps for the Carers Strategy, London: Department of Health, 2010.
19. Department of Health. Caring for our future: reforming care and support. London: Department of Health, 2012.
20. Department of Health. Policy: helping carers to stay healthy. London: Department of Health, 2013.
21. Department of Health. Policy: treating patients and service users with respect, dignity and compassion. London: Department of Health, 2013.
22. Jackson D, Williams D, Turner-Stokes L,. How do carers of people with long term neurological conditions experience the provision of replacement care? Final report to the Department of Health RandD grant 053/0012, 2011, http://www.ltnc.org.uk/download-files/final%20reports/April%2012/2012/2012/Replacement%20care-%20final%20report(rev).pdf
23. Jackson D, Turner-Stokes L, Harris J,. Support for carers, particularly those with multiple caring roles: an investigation of support needs and the cost of provision. Final report to the Department of Health RandD grant 053/0007, 2011, http://www.ltnc.org.uk/download-files/final%20reports/Oct-11/Final-Report-Support-for-Carers.pdf
24. Heaton J,. Reworking qualitative data: the possibility of secondary analysis. London: SAGE, 2004.
25. Locock L, Brown JB,. All in the same boat? Patient and carer attitudes to peer support and social comparison in Motor Neurone Disease (MND). Soc Sci Med 2010; 71: 1498-1505.
26. Joffe H,. Thematic analysis. In: Harper D, Thompson AR, (eds) Qualitative research methods in mental health and psychotherapy: a guide for students and practitioners. Chichester, UK: John Wiley and Sons, Ltd, 2011, pp. 163-223.
27. Guest G, MacQueen K, Namey E,. Applied thematic analysis. London: SAGE, 2012.
28. Cho J, Trent A,. Validity in qualitative research revisited. Qual Res Psychol 2006; 6: 319-340.
29. Tong A, Sainsbury P, Craig J,. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 2007; 19: 349-357.
30. Ng L, Khan F,. Multidisciplinary care for adults with amyotrophic lateral sclerosis or motor neuron disease. Cochrane Database of Syst Rev 2009; (4): CD007425.
31. OBrien M, Whitehead B, Jack B,. 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. Disabil Rehabil 2012; 34: 247-256.
32. McCabe MP, Roberts C, Firth L,. Satisfaction with services among people with progressive neurological illnesses and their carers in Australia. Nurs Health Sci 2008; 10: 209-215.
33. Chiò A, Gauthier A, Montuschi A,. A cross sectional study on determinants of quality of life in ALS. J Neurol Neurosurg Psychiatry 2004; 75: 1597-1601.
34. Aoun S, Connors S, Priddis L,. Motor Neurone Disease family carers experiences of caring, palliative care and bereavement: an exploratory qualitative study. Palliat Med 2012; 26: 842-850.
35. Locock L, Ziebland S, Dumelow C,. Biographical disruption, abruption and repair in the context of motor neurone disease. Sociol Health Illn 2009; 31: 1043-1058.
36. Calvo A, Moglia C, Ilardi A,. Religiousness is positively associated with quality of life of ALS caregivers. Amyotroph Lateral Scler 2011; 12: 168-171.
37. Folkman S, Lazarus RS,. An analysis of coping in a middle-aged community sample. J Health Soc Behav 1980; 21: 219-239.
38. Stroebe M, Schut H,. The dual process model of coping with bereavement: rationale and description. Death Stud 1999; 23: 197-224.