3 years ago

Core elements to understand and improve coping with Parkinson's disease in patients and family carers: A focus group study

Mari Carmen Portillo, Sara Díaz De Cerio Ayesa, Mario Riverol Fernández, Neus Caparrós, M. Victoria Navarta-Sánchez, M. Eugenia Ursúa Sesma
Aims The aim of this study were: (1) To explore the meaning that coping with Parkinson's disease has for patients and family carers; (2) To suggest the components of an intervention focused on enhancing their coping with the disease. Background Adapting to Parkinson's disease involves going through many difficult changes; however, it may improve quality of life in patients and family carers. One of the key aspects for facilitating the psychosocial adjustment to Parkinson's disease is the strengthening of coping skills. Design A sequential explanatory mixed methods study was carried out. Findings from the qualitative phase are presented. Methods Data were collected in May 2014 through three focus groups: one of people with Parkinson's disease (n = 9), one of family carers (n = 7) and one of healthcare professionals (n = 5). All focus groups were digitally recorded and transcribed verbatim and content analysis was independently carried out by two researchers. Findings The participants coincided in highlighting that coping with Parkinson's disease helped the patient and the family carer in their search for balance; and it implied a transformation in their lives. To aid the process of coping with Parkinson's disease, a multifaceted intervention is proposed. Conclusion Coping with Parkinson's disease is a complex process for both patients and family carers and it should therefore be considered a standard service in healthcare policies aimed at this group. The proposed intervention constitutes a nursing tool which has great potential to improve the quality of life in Parkinson's disease and in other long-term conditions.

Publisher URL: http://onlinelibrary.wiley.com/resolve/doi

DOI: 10.1111/jan.13335

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