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Keywords

empowerment for health, expert patient, multiple sclerosis, peer support, qualitative research

 

Authors

  1. Robles-Sanchez, Miguel-Angel
  2. Cruz-Diaz, Veronica
  3. Amil-Bujan, Paloma
  4. Sastre-Garriga, Jaume
  5. Ramio-Torrenta, Lluis
  6. Bertran-Noguer, Carme

Abstract

ABSTRACT: BACKGROUND: Multiple sclerosis (MS) affects approximately 50 000 people in Spain, so it is essential to implement health interventions that respond to their needs and demands. Expert patient programs may facilitate health-related empowerment through peer learning, but their particular features need to be tailored to MS. METHODS: Qualitative research was used to examine the needs and demands of people with MS in relation to the management of MS with the aim of designing a specific program to enable empowerment. Data gathered from focus group interviews were coded and grouped using thematic analysis with independent peer review. RESULTS: The identified needs and demands focused on improving MS knowledge and acquiring the skills to promote self-management and autonomy. An MS expert patient program should address the impact of MS, its integrated treatment, and health promotion. The program's design should follow an open script with small groups and the support of healthcare professionals. Participants showing a need for help and an absence of comorbidities that prevent interaction should be included. Expert patients should have a positive outlook on their health, experience-based knowledge, and leadership and communication skills. The identified potential benefits were an improvement in knowledge, quality of life, and the normalization of the patient's health situation. CONCLUSION: The needs and demands of people with MS focused on enhancing knowledge about all aspects of the disease and on acquiring skills to promote self-management, autonomy, and empowerment. Program design and content were identified enabling determination of the characteristics needed to resolve these issues and develop an expert patient program for people with MS in Spain.