1. The family as a secure base for identity reconstruction following a
diagnosis of MS: A meta-synthesis of qualitative literature on multiple sclerosis
Alex Barker, Nadina Lincoln and Roshan das Nair
Introduction
Multiple sclerosis (MS) is a disease of the central nervous system (23) which can produce a wide range of symptoms including physical impairment, cognitive impairment and emotional impairment (14). Multiple sclerosis is a degenerative disease with a downward progression featuring irregular relapses which affects all aspects of an individual’s life including their personal life and plans, their self confidence, their family lives, their future and their employment (21). Many salient aspects of the self are lost as a result of multiple sclerosis and are replaced by negative self concepts, which has been associated with low psychological well-being (9). This loss of identity can lead an individual into a transition period where an attempt to reconstruct their identity is made (1). Identity refers to the sense of self that people derive from their membership in social groups (28)
Adapting to Identity Change
Two patterns of adapting to identity change have been identified in response to chronic illness (5). Bracketing involves compartmentalising the disease to preserve a sense of pre-diagnosis self, in an attempt to recover the lost identity. Adapting involves acknowledging the impairment and the lost identity and reconstructing a new identity based upon the changed sense of self
A meta-synthesis of the qualitative literature around identity change in MS will allow insight to see if the family can provide a secure base for identity change, as well as, investigating which coping strategies people with MS use, following a loss of identity.
Method
Meta Synthesis
The meta-ethnographic analytic approach (24) was used for this meta-synthesis. This approach involves identifying themes across different studies, so that the results of a synthesis are grounded in the data, whilst, allowing a re-conceptualisation across studies (7).
Databases
The following databases were searched using a wide range of search terms; EMBASE, Medline, Psychinfo, Web of Knowledge and Science Direct. Criteria for inclusion were defined before searching.
A total of 118 citations were returned using the literature search. 14 studies were deemed relevant.
Themes and Sub-themes
The three main themes identified were; the family as a secure base, the problems encountered with living with MS or having a member of the family with MS, and coping strategies used. A number of sub-themes were also identified. The prevalence of the main themes and most common sub-themes are displayed below.
Line of Argument
The family appears to act as a secure base, providing social support as soon as symptoms appear, with a number of studies showing that the family is often the first to know about the diagnosis (12, 27) and the first source of social support for the person with MS (PwMS) (12,27,22). This relationship appeared to be reciprocal (2), so that both the PwMS and their family support each other whilst they come to terms with the diagnosis.
A wide range of difficulties were identified in coming to terms and living with MS, these ranged from social withdrawal (1, 12), to the effects of losing or reducing work (1, 8,12,15,18,19), to issues of dependency tensions (8,12,17,19). Social support from the family appears to affect the impact of these problems as well as coping strategies used by both the PwMS and the family members (12).
The two forms of coping previously identified in the literature were used by the PwMS and their family members to cope with the changed identity. Adaptive coping strategies appeared to be associated with positive outcomes, such as family engagement with MS (2, 17), and increased social activity following an initial withdrawal stage after diagnosis (12). Whereas, Bracketing coping strategies, such as, compartmentalising the disease, was associated negative outcomes, such as loss of roles, identity and self worth (15), and social withdrawal (1). Adjusting to a changed identity appeared to reduce the negative effects of identity loss, as predicted by the Social Identity Model of Identity Change (9,13).
Implications
The family can provide a secure base for identity reconstruction if problems encountered through everyday life with MS can be adapted into the individual and family identity. The individual will then incorporate the illness into their new identity and will be more willing to attend support groups (12) and identify with the MS sufferer in-group, improving social capital (11). This has its benefits, the shared social identity of members of stigmatised groups provides a basis for shared social support that can provide individuals with the emotional, intellectual, and material resources to cope with and resist the injustice of discrimination, prejudice, and stigma (16). However, The family is not always successful in providing a secure base for identity reconstruction. In these cases support groups might be better.
The study provides a starting point for further research into the role of the family in forming a new identity following a diagnosis of MS. By providing information on effective coping styles in response to living with MS, to both the person with MS and their family members, new identities can be formed by adapting to the diagnosis. This will reduce the negative effects of the loss of identity, protecting the psychological wellbeing of people with MS. This meta-synthesis provides evidence for the Social Identity Model of Identity Change (13) by showing how a person with multiple sclerosis can build a new identity by using previous identities as a secure base.
Limitations
The limitations of this meta-synthesis are that;
There are a limited number of studies investigating the role of the family on identity in MS
All of the studies were conducted in Europe and North
A meta-synthesis is an interpretation of other researchers interpretation of results. This will affect the generalisability of the findings of this meta-synthesis.
The Social Identity Model of Identity Change
The Social Identity Model of Identity Change (SIMIC) (13), argues that belonging to a large number of different groups before a life changing transition, such as a diagnosis of MS, can protect from the effects of this transition by providing groups to fall back on (9). These groups continue to form a basis for drawing social support, whilst providing a secure base for people to establish new identities which are integrated and compatible with previous identities, enhancing a persons identity continuity (13), which can reduce the negative effects of identity loss on psychological well-being (9).
References
1)Boeije, et al. (2002). Encountering the downward phase: biographical work in people with multiple sclerosis living at home. Social Science & Medicine, 55(6),
2) Boland, et al. (2012). Coping with multiple sclerosis as a couple: 'peaks and troughs' - an interpretative phenomenological exploration. Disability and Rehabilitation, 34(16),
3) Bowen, et al. (2011). Advanced multiple sclerosis and the psychosocial impact on families. Psychology & Health, 26(1),
4) Boyd, et al. (2005). Experiences of children and adolescents living with multiple sclerosis. The Journal of Neuroscience Nursing, 37(6),
5) Charmaz, K. (1995). The body, identity, and self: Adapting to impairment. Sociological Quarterly, 36(4), 657–680.
6) Douglas, et al. (2008). Understanding chronic pain complicating disability: Finding meaning through focus group methodology. Journal of Neuroscience Nursing, 40(3),
7) Doyle, L. H. (2003). Synthesis through meta-ethnography: paradoxes, enhancements, and possibilities. Qualitative Research, 3(3),
8)Dyck, I. (1995). Hidden geographies - The changing lifeworlds of women with multiple sclerosis. Social Science & Medicine, 40(3),
9) Haslam, et al. (2008). Maintaining group memberships: social identity continuity predicts well-being after stroke. Neuropsychological Rehabilitation, 18(5-6),
10) Haslam, et al. (2009). Social identity, health and well-being: An emerging agenda for applied psychology. Applied Psychology: An International Review, 58, 1-23.
11) Helliwell, J.F., & Barrington-Leigh, C.P. (2012). How much is social capital worth? In Jetten, et al. (Eds.). (2012). The Social Cure: Identity, Health and Well-Being (pp ). Hove & New York: Psychology Press.
12) Irvine, et al. (2009). Psychosocial adjustment to multiple sclerosis: exploration of identity redefinition. Disability and Rehabilitation, 31(8),
13) Jetten, J., & Panchana, N. (2012). Not wanting to grow old; a social identity model of identity change (SIMIC) analysis of driving cessation among older adults. In Jetten, et al. (2012). The Social Cure: Identity, Health and Well-Being. Psychology Press, Hove & New York.
14) Jonsson, A., & Ravnborg, M.H. (1998). Rehabilitation in Multiple Sclerosis. Acta Neurol Scand, 93,
15) Johnson, et al. (2010). Being in- or out-of-sync: A qualitative study of couples' adaptation to change in multiple sclerosis. Disability and Health Journal, 32(3),
16) Levine, et al. (2002). Self-categorisation and bystander non-intervention: Two experimental studies. Journal of Applied Social Psychology, 7, 1452–1463.
17) Lexell, et al. (2011). Occupational Adaptation in People With Multiple Sclerosis. Otjr-Occupation Participation and Health, 31(3),
18) Lexell, et al. (2009). Constantly Changing Lives: Experiences of People With Multiple Sclerosis. American Journal of Occupational Therapy, 63(6),
19) Liedstrom, et al. (2010). Quality of Life in Spite of an Unpredictable Future: The Next of Kin of Patients With Multiple Sclerosis. Journal of Neuroscience Nursing, 42(6),
20) McLaughlin, J., & Zeeberg, I. (1993). Self care and multiple sclerosis - A view from two cultures. Social Science & Medicine, 37(3),
21) Murray, T.J. (1995). The psycho-social aspects of multiple sclerosis. Neurologic Clinics, 13(1),
22) Mutch, K. (2010). In sickness and in health: experience of caring for a spouse with MS. British Journal of Nursing, 19(4),
23) National Institute for Health and Clinical Excellence (2003). Multiple sclerosis: Management of multiple sclerosis in primary and secondary care [internet]. London, NICE.
24) Noblit, G. W. & R. D. Hare (1988). Meta-Ethnography: Synthesizing Qualitative Studies, SAGE Publications.
25) Riazi, et al. (2012). Quality of life in the care home: A qualitative study of the perspectives of residents with multiple sclerosis. Disability Rehabilitation, 34(24),
26) Robinson, I. (1980). Personal Narratives, social careers and medical courses - Analysing life trajectories of people with multiple sclerosis. Social Science & Medicine, 30(11),
27)Stewart, D. C. & Sullivan, T. J. (1982). Illness behaviour and the sick role in chronic illness - The case of multiple sclerosis. Social Science & Medicine, 16(15)
28) Tajfel, H., & Turner, J.C. (1979). An integrative theory of intergroup conflict. In Austin, W.G., Worchel, S. (Eds.) The Social Psychology of Intergroup Relations (pp 33-47). Monerey, CA: Brooks/Cole.
Mr Alex Barker, MBPsS (BSc, MSc), PGR Student,
Division of Rehabilitation and Ageing,
YANG Fujia Building, Jubilee Campus, Nottingham, NG8 1BB Wordpress: