Abstract
Background: Personal caregivers including partners and families play a critical role in supporting persons with MS, including engagement in health behaviours. The role and challenges of carer burden are acknowledged in the research, yet there is less research on what helpful caregiving looks like, what resources and qualities are needed to promote it, and what barriers may emerge.
Methods: In this qualitative study, we explored these questions through interviews with 27 participants in Australia (10 persons with MS, 10 carers, and 7 MS service providers).
Results: All groups described personal qualities of helpful caregiving that would typically align with compassionate care, including patience, knowledge and understanding, empathy, and being non-judgmental. In supporting health behaviours in persons with MS, this translated into caregiving actions such as encouraging autonomy, shared decision making and working together, openness in communication, and listening with attention. Participants identified tensions in caregiving such as managing the balance between providing enough support with encouraging independence, as well as balancing the commitment to caregiving with the need for self-care. Caregivers also recognised personal barriers to helpful caregiving such as self-criticism and guilt, lack of time, energy, and support, and identified resources that would facilitate helpful caregiving including attending to carer wellbeing, managing difficult emotions, seeking support and connection, and respite.
Conclusions: These findings may help to inform the development of skills and resources to support carer wellbeing as well as supporting care for persons with MS.