Informal carers’ experiences of caring for someone with Multiple Sclerosis: A photovoice investigation

Abstract

Objectives. This study explores the lived experiences of carers of people with Multiple Sclerosis (MS), specifically in relation to their quality of life (QoL), through the use of images and narratives, with the aim of gaining a nuanced insight into the complex nature of QoL in the MS caregiving context. Design. Real-time qualitative design using the photovoice method. Methods. Twelve MS carers (aged 30-73 years) took photographs of objects/places/ events that represented enhancement or compromise to their QoL and composed written narratives for each photograph based on their experiences of caregiving. In total, 126 photographs and their corresponding narratives were analysed using content analysis. Results. Seven interrelated themes were identified. MS caregiving-related challenges, sense of loss (e.g., loss of activities), emotional impact (e.g., feeling lonely), urge to escape, and sense of anxiety over the unpredictability of MS carer role were discussed in relation to the negative experiences that compromised their QoL. The themes precious moments (e.g., time spent with loved ones or hobbies) and helpful support (e.g., family and pets) encompassed participants' positive experiences that enhanced their QoL. Conclusions. Findings demonstrated the multi-faceted and complex nature of MS caregiver's QoL and highlighted that although the experiences of MS carers were mostly negative, there were also some positive aspects to caregiving, that helped enhance carers' QoL by ameliorating these negative experiences. These findings can be used to inform support programmes and enhance service provision for MS carers. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

Intertwined like a double helix: A meta‐synthesis of the qualitative literature examining the experiences of living with someone with multiple sclerosis

“…Many experienced a sense of loss 35,44 ; they felt that MS had changed their partner, the dynamics of their relationship and themselves 43,53,63,65 . Those who had to stop or reduce their work sometimes experienced a loss of self and status 35,37,58,63 . Some children acting as caregiver to a parent with MS described a reversal of the parent–child role, 59,64 with others reporting taking on parental obligation for younger siblings as well as parenting themselves 27,54,60 .…”

“…Some children acting as caregiver to a parent with MS described a reversal of the parent–child role, 59,64 with others reporting taking on parental obligation for younger siblings as well as parenting themselves 27,54,60 . Many experienced a loss of connectedness with friends, family and work colleagues as their social lives contracted 24,26,34,36,37,39,41,42,44,48,53,58,63,68 . Participants—particularly children of people with MS 24,27,54,60 —described a sense of becoming invisible as family, friends or health care providers never asked about them, only about the person with MS 24,37 …”

“…Uncertainty about MS diagnosis, treatment, prognosis and management underpinned the experiences and concerns of people living with a person with MS. The unpredictable trajectory of MS was presented as a constant source of worry for partners, 43,44,46,47,51,58,68,70 carers, 25,[34][35][36]39,42,65 support persons, 23 Young carers felt unsupported and isolated.…”

“…X X X X X There is a need for health professionals to provide support that focusses on the needs of partners. children 24,28,30,33,54,[58][59][60]64 and parents of people with MS, 25,32,55 and their next of kin. 37 This existential uncertainty was psychologically distressing for partners who described not knowing how to help the person with MS 66 and for carers worried about being unable to care for them if they themselves were unwell.…”

Risco de Lesões Músculo Esqueléticas nos Enfermeiros: Contributos do Photovoice

“…O Photovoice foi relevante como método de recolha de dados por traduzir a auto perceção dos participantes e permitir uma melhor compreensão do significado das LMELT e, concomitantemente, promover um papel mais ativo na sua prevenção (Topcu et al, 2020).…”