Core elements to understand and improve coping with Parkinson's disease in patients and family carers: a focus group study
Navarta-Sánchez MV (1), Caparrós N (2), Riverol Fernández M (3), Díaz De Cerio Ayesa S (4), Ursúa Sesma ME (5), Portillo MC (6).
(1) University of Navarre, Faculty of Nursing. C/ Irunlarrea, s/n, Edif. De los Castaños,, 31008, Pamplona, Navarre, Spain.
(2) University of La Rioja, Faculty of Law and Social Sciences. C/ Cigüeña 60, 26004, Logroño, La Rioja, Spain.
(3) Clínica Universidad de Navarra, Department of Neurology. Avenida Pio XII, 36,, 31008, Pamplona, Navarre, Spain.
(4) SW. Navarre Association of Parkinson's patients. C/ Aralar 17, 31004, Pamplona, Navarre, Spain.
(5) Navarre Service of Health-Osasunbidea. Plaza Obispo Irurita s/n Planta Baja, 31011, Pamplona, (Navarre), Spain.
(6) University of Southampton, Faculty of Health Sciences. Building 67, Highfield Campus, University Road, Southampton, Hampshire, UK SO17 1BJ, United Kingdom. National Institute for Health Research CLAHRC Wessex.
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.
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.
A sequential explanatory mixed-methods study was carried out. Findings from the qualitative phase are presented.
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.
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.
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.
CITATION J Adv Nurs. 2017 May 11. doi: 10.1111/jan.13335