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The caring experience in multiple sclerosis: caregiving tasks, coping strategies and psychological well‐being
- Authors:
- BASSI Marta, et al
- Journal article citation:
- Health and Social Care in the Community, 28(1), 2020, pp.236-246.
- Publisher:
- Wiley
Informal caregivers play a crucial role in supporting persons with multiple sclerosis (MS), a neurodegenerative disease resulting in progressive worsening of physical and cognitive functioning. While research extensively showed that caregiving workload can be perceived as burdensome, little attention was devoted to the relation connecting workload and caregivers’ well‐being. Building on previous literature on stress and coping, the aim of this study was to test the mediational role of coping between caregivers’ tasks and well‐being. A group of 680 caregivers of persons with MS (M age = 46.45; 51.2% women) was recruited in eight Italian MS centres between June 2015 and December 2016. Caregiving tasks related to basic activities of daily living (ADL), instrumental ADL, psycho‐emotional and social‐practical care were assessed through the Caregiving Tasks in MS Scale; coping strategies (avoidance, criticism and coercion, practical assistance, supportive engagement, positive reframing) were investigated through the Coping with MS Caregiving Inventory; well‐being was evaluated through the Psychological Well‐Being Scales. Analyses substantiated a multi‐mediation model including tasks in basic ADL, psycho‐emotional and social‐practical care, and the coping strategies avoidance, criticism/coercion, supportive engagement, positive reframing. Basic ADL care was negatively related to psychological well‐being through lower use of supportive engagement and positive reframing. By contrast, psycho‐emotional and social‐practical tasks were both negatively and positively related to psychological well‐being, through higher use of avoidance and criticism/coercion as well as supportive engagement and positive reframing. Findings suggest that caregiving tasks are not solely detrimental to well‐being, but they may also provide a positive contribution through the adaptive coping strategies supportive engagement and positive reframing. Findings also highlighted task‐specific areas that could be targeted in intervention in order to effectively lighten burden and promote well‐being among caregivers. (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.
How do adolescents adjust to their parent's multiple sclerosis?: an interview study
- Authors:
- BOGOSIAN Angeliki, et al
- Journal article citation:
- British Journal of Health Psychology, 16(2), May 2011, pp.430-444.
- Publisher:
- Wiley
This study explored how adolescents with a parent with multiple sclerosis (MS) adjust to their parents' illness. The authors chose to use thematic analysis rather than content analysis which has tended to be used in previous studies on this subject. Broad open ended questions were asked in the interviews (n= 15) to facilitate the development of a child-centred understanding of how adolescents adjust and which resources they use to cope in this situation. The adolescents described both positive and negative experiences related to having a parent with MS. Benefits included feeling more empathetic to others and more grown-up. Negative impacts included family tension, less time to spend with friends, and worries about the future. The support from the well parent, siblings, and friends facilitated adolescents' adjustment. Adolescents assuming a parenting role and illness characteristics, such as illness deterioration, relapses and fatigue, challenged adolescents' adjustment. The authors conclude that while some adolescents adjust well to having a parent with MS, others appear to have more difficulty. Whilst the severity of the parent's deterioration and symptoms played a part in adjustment, other potentially modifiable factors such as the lack of well parent's support, adolescents' increased parenting responsibilities, and family tension also created barriers to adolescents' adjustment.
Exploring occupational adaptation through the lives of women with multiple sclerosis
- Authors:
- CAHILL Mairead, CONNOLLY Deirdre, STAPLETON Tadhg
- Journal article citation:
- British Journal of Occupational Therapy, 73(3), March 2010, pp.106-115.
- Publisher:
- Sage
Multiple sclerosis (MS) affects people's physical capabilities and the lives of people with MS are constantly changing (Finlayson et al 2005), yet how people adapt to the disease from an occupational perspective has received little attention. This study explored the occupational adaptation of women with MS. Seven women with MS were recruited from the Multiple Sclerosis Society of Ireland. Each participant completed the Modified Interest Checklist (Kielhofner and Neville 1983), the Role Checklist (Oakley et al 1985) and the Occupational Questionnaire (Smith et al 1986). Qualitative data were also collected, using the Occupational Performance History Interview - II (Kielhofner et al 2004). Three main themes emerged: the impact of MS on (i) performance capacity, (ii) roles and (iii) interests. The participants adapted by performing interests and roles differently and developing new meaningful interests and roles that were congruent with their performance capacity. The findings highlight the importance of having an understanding of the impact of different types of MS on the occupational adaptation process. A greater understanding will facilitate occupational therapists in enabling people with MS to adapt to their condition by engaging in meaningful occupations throughout the lifespan.
Development of the benefit finding in multiple sclerosis (MS) caregiving scale: a longitudinal study of relations between benefit finding and adjustment
- Authors:
- COX Stephen, PAKENHAM Kenneth
- Journal article citation:
- British Journal of Health Psychology, 13(4), November 2008, pp.583-602.
- Publisher:
- Wiley
This longitudinal study investigated the dimensions, stability, and validity of the benefit finding in multiple sclerosis caregiving (BFiMSCare) scale. Participants were 232 carers of persons with MS and their care recipients recruited in Australia. Questionnaires were completed at Time 1 and 12 months later (Time 2). Factor analysis of the BFiMSCare scale revealed six psychometrically sound factors: enriched relationship; spiritual growth; family relations growth; life-style gains; inspiration; and relationship opportunities. Results of regression analyses indicated that the Time 1 BFiMSCare factors and the total score accounted for significant amounts of variance in each of the Time 1 positive adjustment outcomes (life satisfaction, positive affect, dyadic adjustment) and in Time 2 positive affect and dyadic adjustment. The BFiMSCare total score predicted all Time 2 adjustment domains (positive affect, dyadic adjustment, care recipient adjustment ratings of carer) except life satisfaction and distress, whereas the six factors as a block predicted positive affect and life satisfaction. Findings delineate the dimensional structure of BF in caregiving and the differential links between BF dimensions and adjustment, and have implications for the measurement of BF.
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)