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Keywords:

  • caregivers;
  • chronic illness;
  • community;
  • focus groups;
  • Huntington disease;
  • supportive care

Aim.  The aim of this research was to identify the needs and coping strategies of individuals with Huntington disease and their family members/carers and to ascertain the extent to which they were supported by the type of specialised service provided in this unit.

Background.  The duration of the illness may be up to 30 years and there are far reaching implications for the affected person, family members and carers. Services for families need to provide expert psychological and practical support, whilst remaining planned and flexible. The aim of this research was to identify needs and coping strategies of individuals with Huntington disease and their carers and ascertain the extent to which they were supported by a specialised community service.

Methods.  Five focus groups and three individual interviews were used to gather data from affected individuals, family, carers and staff of the unit (n = 33). A semi-structured discussion guide was used in every case. Data were analysed using an inductive coding technique.

Results.  Three main themes emerged; (i) Transitions and the journey, (ii) Challenges in finding and providing support and (iii) The role of the unit in providing supportive care. While the service was seen as supportive, the need for flexibility was emphasised to facilitate the transition from unaffected to affected status. Affected individuals felt it was important to be known as the person they had been, despite the changes due to the disease.

Conclusions.  Provision of service in a dedicated unit is an appropriate way to support affected patients and their carers. Enhancing understanding of the disease and allowing the individual to make choices can assist coping with this challenging disease.

Relevance to clinical practice.  It is helpful to allow patients control over timing and frequency of contact with professionals. Improving understanding of the condition in the public and health professionals may enable patients to access a greater range of social activities.