The need for support services for family carers of people with motor neurone disease (MND): views of current and former family caregivers a qualitative study

Abstract

Purpose: Family carers provide the majority of home-based care for people with motor neurone disease (MND). Carers’ need for, and use of, support services are not fully understood; this study aimed to explore, from a qualitative perspective, the views of current and former family carers of people with MND. Methods: A qualitative study was undertaken in Northwest England, using narrative interviews with current (18) and former (10) carers of a family member with MND. An optional longitudinal element involving diary completion was offered to the current carers. Data were analyzed using a thematic framework approach. Results: Carer’s needs vary, but encompass the provision of information and training, availability of respite care, counselling, and access to trained paid-for carers. Conclusions: There is need for a range of support services to be made available from which carers can select those most appropriate for them. Some support services are not always available for carers of this client group. There is a need for carers to access greater manual handling and training for physical care. Without sufficient support, carer burden can be overwhelming which may impact on the place of care of the patient and ultimately has implications for health and social care services.

Implications for Rehabilitation

• People with motor neurone disease have complex care needs with family carers providing the majority of home-based care.

• This study has shown there is a need for increased training in manual handling and physical care for family carers.

• Failure to properly support family carers increases the burden on them and if left unchecked may ultimately affect where the patient is cared for.

• A range of support services are needed for family carers with clear signposting for them to select those most appropriate for their individual needs.

Keywords::

• Caregivers
• end-of-life care
• family
• motor neurone disease
• support services

Acknowledgements

Since this paper was originally submitted, tragically, Douglas Mitchell died following a short illness with cancer. He had a particular interest in MND and his contribution to care and research in this area will be sadly missed.

The authors wish to acknowledge the contribution of the study participants, who gave freely of their time. In addition, thanks go to Joyce Gardham, Pauline Callagher and staff at the Preston MND Care and Research Centre for their assistance with the study.

Declaration of interest: This manuscript presents independent research commissioned by the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0706–10369). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.