Neuropalliative care for progressive neurological diseases: A scoping review on models of care and priorities for future research.

BACKGROUND: Neuropalliative care is a newly-defined subspeciality bringing specific aspects of fields of neurology and palliative care together to better meet the complex care needs of people with progressive neurological diseases. Examining these needs would help provide guidance about developing relevant models of care and identify gaps in research knowledge. AIM: To identify current models and approaches to neuropalliative care for people with progressive neurological diseases and the priorities for future research work. DESIGN: A scoping literature review following the methods described by the Joanna Briggs Institute. DATA SOURCES: An electronic search of the literature was undertaken from six sources including MEDLINE (Ovid), EMCARE, PsycINFO and CINAHL covering the years January 2011 to September 2021. RESULTS: Twenty-eight studies were found examining neuropalliative care from the perspectives of 4795 PND patients, 774 informal carers and 138 health professionals. All studies held themes of integrative care, with most studies employing outpatient models of multidisciplinary care. Topics discussed included: overcoming local system-issues, providing education for professionals, patients and carers, early referral and capturing outcome measures for quality-assurance and future research work. CONCLUSIONS: Most models of neuropalliative care described in the international literature are predominantly outpatient, multidisciplinary and integrative. Clinicians typically utilise existing neurology and palliative care infrastructure to provide care. More high-quality research and outcome tools are needed to guide the design of evidence-based palliative care for people with progressive neurological diseases.

A self-care, problem-solving and mindfulness intervention for informal caregivers of people with motor neurone disease: A pilot study.

BACKGROUND: Informal caregivers of people with motor neurone disease (MND) take on an extensive role. Caregivers are at increased risk of experiencing psychological distress and burden, yet, there is a lack of intervention programmes to support them. AIM: The aim of this study was to investigate the feasibility and acceptability of a therapeutic group intervention promoting self-care, problem-solving and mindfulness to informal caregivers of people with MND. DESIGN: Pilot study that utilised a one-arm pre- and post-design. Acceptability of the intervention was assessed 2 weeks post intervention with a questionnaire designed specifically for this study. Feasibility was assessed with consent, adherence and reasons for non-participation, refusal and attrition. Participants completed baseline and follow-up (6-week post intervention) questionnaires for psychological morbidity, burden, problem-solving, mindfulness and preparedness. Settings/participants: Caregivers of people with a diagnosis of MND within the past 12 months who were 18 years or older; who could speak, read and write in English and who were attending a progressive neurological diseases clinic were eligible. RESULTS: A total of 13 caregivers participated in one of three group intervention sessions which were focused on self-care, problem-solving and mindfulness. The intervention appeared to be feasible and acceptable. All participants stated that they would recommend the intervention to others. The group format appeared to be highly valued. There was no significant change in measures between pre-intervention and 6 weeks post intervention. CONCLUSION: This pilot serves as an initial step for examining interventions for MND caregivers, with the hope of identifying effective, efficient and sustainable strategies to best support this group.