Caregiving and Respite for People With Motor Neurone Disease: A National Cross‐Sectional Survey of Experiences and Challenges
Natalie Gauld, Joanna Hikaka, Simone Newsham, Chris Frampton, Ruth Mylchreest, Tamzin Brott, Sarah M. Buchanan, Stephen BuetowABSTRACT
Aims
To ascertain care support for people with motor neurone disease encompassing formal and informal care (funded and unfunded care), residential respite utilisation, care tasks performed by family members, and experiences and challenges encountered in accessing funded care.
Design
National cross‐sectional survey.
Methods
People with motor neurone disease, their family members, and bereaved family members were surveyed across New Zealand. Analysis included descriptive and multivariable statistical methods. Responses to open‐ended questions were analysed thematically.
Results
Data were available from 115 people with motor neurone disease, 89 family carers and 40 bereaved carers. Care hours data represented 189 unique individuals with motor neurone disease – 115 responses from people with motor neurone disease, 35 from family carers and 39 bereaved. Most (58%) reported needing funded care but only 50% received it (median 24 h/week), 51% reporting this was insufficient. Younger age, greater disease severity and slow (versus fast) progression rate were associated with greater likelihood of receiving funded care (all p < 0.05); fewer funded hours were associated with faster progression and age over 65 years (all p < 0.05). Most people with motor neurone disease (77%) received unpaid care (median 30 h/week), rising to 90% among bereaved respondents (median 80 h/week). Barriers to funded care included assessment delays, insufficient information and unmet eligibility criteria. Inadequate care funding affected family (e.g., exhaustion, safety issues), and the person with motor neurone disease (e.g., unmet needs and safety concerns), with additional financial impacts. Many family members reduced paid work during the illness. Residential respite was used by only 15%, with multiple reasons for non‐use.
Conclusion
Inadequate funded care and residential respite provision in New Zealand impose a substantial burden on families to provide unpaid care, harming both people with motor neurone disease and family members.
Implications
Funded care needs to be more responsive to the needs of those with motor neurone disease and their caregivers.
Impact
Little is known about funded and unpaid care in motor neurone disease (MND), particularly the challenges of acquiring sufficient funding and arising from insufficient funding. This study found that many people with MND could not access the care hours they needed, leaving family members to provide high levels of unpaid care, while often reducing their own paid work. Resulting challenges included exhaustion for family, financial strain, unmet needs, and safety concerns for the person with MND. Insufficient care funding was associated with reduced life satisfaction for family members. The care funding system was hard to navigate and too slow, particularly where MND progresses fast. From a nursing perspective, this research highlights the critical importance of funded care that is flexible and responsive to rapidly changing needs. When funding systems are slow or difficult to navigate, the burden often falls on families, increasing stress and risk for the person with MND and their carers. This research should inform policy in New Zealand and internationally, demonstrating the need for care funding systems that are flexible, fast, and straightforward to use—findings relevant regardless of the funding model. Reporting method: this paper was informed by the STROBE checklist for cross‐sectional studies.
Patient or Public Contribution
The lead author has MND. Many people with MND and their family members were involved throughout the study, shaping its concept, scope, and methods. Two people with MND tested the survey in Qualtrics—one using eye gaze technology and one using voice to text. Four people with MND and three carers reviewed the questionnaire, providing feedback that resulted in rewording. One person with MND worked through every question with the lead author over three separate sessions to ensure all questions and response options were clear and meaningful.