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Supporting families and carers of people living with multiple sclerosis: a rapid realist review and realist evaluation
- Authors:
- BULLEY Cathy, et al
- Journal article citation:
- International Journal of Care and Caring, 5(2), 2021, pp.263-282.
- Publisher:
- Policy Press
Supportive interventions are needed for the family and carers of people with multiple sclerosis. A rapid realist review and realist evaluation explored what helps, who it helps, when and how. Literature analysis was synthesised with a thematic analysis of qualitative interviews and focus groups with 49 family and carers of people with multiple sclerosis. The resulting model summarised a family of interventions that could help people develop their capabilities and expand their resources, resulting in more positive outcomes. This may prevent or delay a ‘tipping point’ where capacity to care is overwhelmed by caring roles. (Edited publisher abstract)
Change of identity: the psychological and emotional impact of caring for someone with multiple sclerosis
- Authors:
- HEWARD Kate, GOUGH Brendan, MOLINEUX Matthew
- Journal article citation:
- Social Care and Neurodisability, 2(1), 2011, pp.21-32.
- Publisher:
- Emerald
In the United Kingdom, multiple sclerosis (MS) is the most common disease of the central nervous system affecting young adults, with more than 85,000 living with the condition. The diagnosis of such a condition impacts many aspects of daily life not only for the diagnosed, but also for their carers who are likely to have emotional and psychological problems. This paper describes a study with nine partners/carers that examined the impact of caring for someone with MS, and asked whether or not partners’ identities are affected by taking a central role in caring – including how existing identities are maintained and new ones acquired. Findings revealed two core themes: ‘playing detective’, or seeking evidence regarding symptoms in order to reach a possible diagnosis; and ‘reshaping identities’ such as becoming a sole parent and income generator. In conclusion, it is essential that professionals working with MS are aware that identities within families can change over time, and that there are issues that can arise through these changes that need to be addressed.
MS family and friends 2019 survey findings
- Authors:
- GRANT Rachael, CAVANDER-ATTWOOD Fredi
- Publisher:
- MS Society
- Publication year:
- 2020
- Pagination:
- 20
- Place of publication:
- London
This survey highlights the challenges facing family members and friends providing care and support to people with MS (Multiple Sclerosis). A total of 549 people completed the survey, which was conducted by the MS Society. Areas covered included; the hours of support carers provide; the impact of caring on their employment and financial security; and health and wellbeing. The survey found that half of respondents did not receive the practical, emotional or financial support they need; one in three (34%) have given up work as a result of supporting people with MS, and nearly all respondents to the survey (90%) said their health and wellbeing had been negatively impacted. Changes carers felt would make the most difference to them were: the availability of appropriate care and support services for the person with MS; respect and recognition of their role from health and care professionals; and improved information and advice. (Edited publisher abstract)
Multiple sclerosis: long-term social care and the 'family care pathway'
- Authors:
- BOWEN Ceri, MACLEHOSE Anna
- Journal article citation:
- Social Care and Neurodisability, 1(1), 2010, pp.31-38.
- Publisher:
- Emerald
Neurological disease and neurodisability can be a source of significant disruption to families. In this paper, the authors present details of personal accounts of relatives coping with one particular neurological condition - multiple sclerosis (MS) - reporting on statements that reflect coping with the condition from onset of symptoms to admission to care from the perspective of the family as a whole. The study involved 7 continuing care and respite facilities for people with complex neurological conditions, and the 25 participants were the visiting relatives of family members with MS either resident in one of the care centres or accessing respite care. Interviews were conducted by a graduate psychologist and data were transcribed and analysed. The article discusses the results in terms of stages of family adaptation to MS (emerging, diagnostic, long-term adaptation, crisis, chronic, and terminal), and makes recommendations for supporting family members in the form of a 'family care pathway' for neurology and neurodisability.
Social identity in people with multiple sclerosis: a meta-synthesis of qualitative research
- Authors:
- BARKER Alex B., et al
- Journal article citation:
- Social Care and Neurodisability, 5(4), 2014, pp.256-267.
- Publisher:
- Emerald
Purpose: Many aspects of the self are lost as a consequence of having multiple sclerosis (MS). A person's identity can be altered by negative self-concepts, which are associated with poor psychological wellbeing and can lead individuals to reconstruct their sense of self. The Social Identity Model of Identity Change argues that previously established identities form a basis of continued social support, by providing grounding and connectedness to others to facilitate the establishment of new identities. Family support is a salient factor in adjustment to MS and may enable the establishment of new identities. The purpose of this paper is to investigate identity reconstruction following a diagnosis of MS. Design/methodology/approach: A meta-synthesis of the qualitative literature was conducted to examine the relationship between identity change and family identity of people with MS and other family members. Findings: In all, 16 studies were identified that examined identity change and the family following a diagnosis of MS. Coping strategies used by people with MS and their wider family groups, affect the reconstruction of people's identity and the adjustment to MS. Receiving support from the family whilst a new identity is constructed can buffer against the negative effects of identity loss. Practical implications: The family base is strengthened if MS-related problems in daily life are adapted into the individual and family identity using positive coping styles. Originality/value: This review provides an interpretation and explanation for results of previous qualitative studies in this area. (Publisher abstract)
Contribution of demographic, medical, and social support variables in predicting the mental health dimension of quality of life among people with multiple sclerosis
- Authors:
- SCHWARTZ Chaya, FROHNER Rena
- Journal article citation:
- Health and Social Work, 30(3), August 2005, pp.203-212.
- Publisher:
- Oxford University Press
This study examines the contribution of demographic, medical, and social support variables in predicting the mental health dimension of quality of life (MHD/QOL) among people with multiple sclerosis (MS). Eighty-two participants of employment age recruited from hospital neurology clinics specializing in MS in Israel completed a demographic questionnaire, and 69 completed the Multiple Sclerosis Quality of Life Inventory (MSQLI). In addition, a neurologist used the Expanded Disability Status Scale (EDSS) to assess the medical status of each participant. The number of young children in the family, MS duration, cognitive impairment, and social support were predictors of MHD/QOL. Employment was not associated with MHD/QOL score. Social support made a significant and unique contribution to the MHD/QOL beyond all the other variables. Implications for social work practice are presented.
Homeward bound
- Author:
- GEORGE Mike
- Journal article citation:
- Community Care, 8.1.98, 1998, pp.18-19.
- Publisher:
- Reed Business Information
A woman with multiple sclerosis whose husband had drinking problems had been receiving day care for years, but increased care was needed. Considers the difficulties of deciding how much weight should be given to the client's wishes when assessing an acceptable level of risk.
Living with chronic illness: the experience of patients and their families
- Authors:
- ANDERSON Robert, BURY MIchael
- Publisher:
- Unwin Hyman
- Publication year:
- 1989
- Pagination:
- 265p., diags., bibliogs.
- Place of publication:
- London
Looks at the everyday lives of people with the following conditions : stroke, renal failure, multiple sclerosis, Parkinson's Disease, arthritis, heart attack, epilepsy, rectal cancer, psoriasis and diabetes.
Economic deprivation and its effects on subjective wellbeing in families of people with multiple sclerosis
- Authors:
- DE JUDICIBUS Magaret A., McCABE Marita P.
- Journal article citation:
- Journal of Mental Health, 14(1), February 2005, pp.49-59.
- Publisher:
- Taylor and Francis
- Place of publication:
- London
There has been limited research on the role of financial strain on the adjustment of people with multiple sclerosis.Aims: This study examined the financial costs of MS and the impact of financial strain on the quality of life and adjustment of people with MS and their families. Interviews were conducted with 16 health professionals, 26 people with MS and 11 family members of people who have MS. Economic deprivation impacted on the subjective well being of many families living with MS. Concerns included adjustment to a lower income if the person with MS reduced or ceased work, and meeting the costs of home alterations, mobility equipment, and special transport. The additional cost of living with MS is a stress factor, especially for people dependent on disability support pensions. It is anticipated that the findings from this study will raise the awareness of health professionals and politicians regarding the potential impact of financial stress on people with MS and their families.