Background In 2010, a multidisciplinary, group-based, intensive rehabilitation programme for individuals with early to mid-stage Huntington's disease (HD) was established at two rehabilitation centres in Norway. The programme included intensive physical training, information and support related to speech, nutrition, activities of daily living and cognitive function. There was also a programme for care givers.
Aims To explore patients and care givers' experiences with an intensive rehabilitation programme, and to explore health professionals' experiences and views about rehabilitation of individuals with HD.
Methods We did a qualitative study and interviewed a total of 20 participants, including 11 individuals with early- and mid-stage HD, and nine care givers. We did two focus group interviews with a total of 15 health professionals.
Results Central areas where participants reported positive effects were gait function and balance, being member in a group and increased self-confidence. Challenging areas that was reported in more negative ways were the intensity of the programme and difficulties related to goal-setting. Clinical tests were well tolerated by participants and such tests were sometimes used for motivating participants by documenting improvement. Both participants and health professionals reported positive experiences with a system with a contact person at the institution. Contact between the rehabilitation centres and the participants' municipalities was experienced as important for mobilising local rehabilitation services and health care in the community.
Conclusions The rehabilitation programme was well tolerated by participants, who reported a multitude of self-perceived positive effects. A system with contact persons in the institution is important to facilitate an individualised and coordinated programme for each participant. Community outreach initiatives by the rehabilitation centre may secure long-term effects of the programme.
- qualitative study
- user experience