Palliative care needs and utilisation of specialist services for people diagnosed with motor neuron disease: a national population-based study

Introduction
There is a growing emphasis on the importance of the availability of specialist palliative care for people with motor neuron disease (MND). However, the palliative care needs of this population and the utilisation of different specialist services remain poorly defined.

Objectives
To (1) describe clinical characteristics, symptom burden and functional levels of patients dying with MND on their admission to palliative care services; (2) determine factors associated with receiving inpatient or community palliative care services.

Design
An observational study based on point-of-care assessment data from the Australian Palliative Care Outcomes Collaboration.

Participants
A total of 1308 patients who received palliative care principally because of MND between 1 January 2013 and 31 December 2020.

Measures
Five validated clinical instruments were used to assess each individual’s function, distress from symptoms, symptom severity and urgency and acuity of their condition.

Results
Most patients with MND had no or mild symptom distress, but experienced a high degree of functional impairment. Patients who required ‘two assistants for full care’ relative to those who were ‘independent’ (OR=11.53, 95% CI: 4.87 to 27.26) and those in ‘unstable’ relative to ‘stable’ palliative care phases (OR=16.74, 95% CI: 7.73 to 36.24) were more likely to use inpatient versus community-based palliative care. Associations between the use of different palliative care services and levels of symptom distress were not observed in this study.

Conclusions
Patients with MND were more likely to need assistance for decreased function and activities of daily living, rather than symptom management. This population could have potentially been cared for in the palliative phase in a community setting if greater access to supportive services were available in this context.

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Agosto 2024

Somebody who understands the culture and their needs that can cater for them in their retirement time: a peer research study exploring the challenges faced by British Muslims with palliative care needs during the COVID-19 pandemic

Background
Inequities in palliative and end-of-life care access exist, with evidence of lower uptake of these services among people from the British Muslim community. Little research exists exploring the experiences of British Muslims with palliative care needs and their families during the pandemic or before.

Aim
To coproduce peer research exploring the experiences of British Muslims with palliative care needs and their families during the COVID-19 pandemic.

Design
A collaborative peer research interview study. Peer researchers were recruited and trained to undertake qualitative interviewing. Data were analysed using reflective thematic analysis.

Setting/participants
3 peer researchers conducted 11 telephone interviews (10 in English and 1 in Urdu) between August and September 2021 with 12 participants (5 people with palliative care needs and 7 family carers).

Results
Four themes were identified: (1) issues in accessing healthcare exacerbated by the COVID-19 pandemic, (2) the impact on family carers, (3) variation in support from community groups and (4) social and information exclusion. The COVID-19 pandemic exacerbated existing challenges to accessing healthcare services for British Muslims with palliative care needs. Family members experienced the cumulative impact of supporting people with palliative needs while also advocating for and supporting them to access the care they required. Language barriers, digital exclusion and uncertainly about how to access information, in addition to the apparent lack of consideration of important festivals in the Muslim calendar in the implementation of policies around lockdowns, culminated in a sense of exclusion from COVID-19-related policies and messaging for this population.

Conclusions
These findings support the need to involve people from diverse backgrounds in the design and delivery of healthcare services and policies. Learning from this unique time in our histories should be used to shape future delivery of culturally aware and inclusive care.

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Agosto 2024