Background Self-management support can be viewed in two ways – as a portfolio of techniques and tools to help patients choose healthy behaviours, and as a fundamental transformation of the patient-caregiver relationship into a collaborative partnership. The hospice delivers a patient and carer programme to encourage self-management for patients with a range of life-limiting conditions. The planning of the programme was carried out with the input of the hospice User Forum, with the scoping of existing groups delivered by hospices across England. The first programme was initially piloted to identify the key sessions and format of the programme. Self-management programmes for patients with long-term conditions have been developed and researched over the past decade. There is limited research concerning these for adults with life-limiting conditions.
Aims Supporting adults with any life-limiting illness – offering information and support to help people manage their illness along with carers, family and friends who support them.
Methods People are invited to attend one or more sessions, which include eating well, living with fatigue, encouraging exercise, coping with being breathless, protecting skin, information about welfare benefits and how to cope with medical and care changes. The hour-long sessions are facilitated by an expert in the relevant field either from the hospice or partner organisations, including Age UK and the NHS Trust.
Results First programme – 31 attendees; second programme – 53 attendees. Examples of participant feedback – ‘I feel rejuvenated’; ‘I close my flat door and come here for positive input’; ‘I had no idea of the range of moulds for the pureed foods I need to have’.
Conclusions Voluntary participation, positive group dynamics, strong but flexible facilitators and active learning techniques – underpin the overwhelmingly positive experiences of the sessions now being rolled out across the year.
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