Adoption, scale-up, and sustainability of a neuropalliative care model: qualitative exploration of pre-implementation barriers and enablers.

BACKGROUND

People with long-term neurological conditions such as Alzheimer's dementia and Parkinson's disease live with these increasingly debilitating conditions for years. However, palliative care is provided only towards the end of life. To address the gap between patient needs and services provided, we piloted an early neuro-palliative model of care - Neurosupport. In this study, we explored pre-implementation barriers and enablers for the adoption, scale-up, and sustainability of Neurosupport.

METHODS

We conducted semi-structured interviews using an interview guide based on the Theoretical Domains Framework. Participants were neurologists and healthcare professionals involved in the care of patients with long-term neurological conditions. Interviews were conducted between May and December 2021. We used deductive and inductive coding followed by code-mapping to arrive at themes.

RESULTS

Twenty-one participants were interviewed, comprising 12 neurologists, four neurology nurses, and five allied healthcare professionals (two speech therapists, one physiotherapist, one medical social worker, and one psychologist). Five themes were generated: (I) build rapport and support patients and families/caregivers; (II) current challenges, foreseeable barriers, and mitigation strategies; (III) unclear value-add of Neurosupport; (IV) integration of health and social services; and (V) implementing and sustaining Neurosupport.

CONCLUSION

This study elicited critical gaps and issues regarding the value proposition, workflows, and resources relevant to the implementation of Neurosupport. Future scale-up and sustainability of Neurosupport depend on these short-comings being addressed.

CLINICAL TRIAL NUMBER: Not applicable.