Estudio de Metodología continuada sobre el abordaje de los factores implicados en la convivencia con la enfermedad de Parkinson

Abstract

The main objective of this study was to determine the relationship between the factors involved in living with Parkinson¿s disease, not only in people affected by it, but also in family carers, in order to design an intervention for this sector of the population, focusing on one of the most influential factors. A mixed-methods study was carried out with an explanatory sequential design in two phases: In the Quantitative Phase, multicentre data collection was carried out at the San Juan Primary Health Centre, in the Clínica Universidad de Navarra and in the Navarre Association of Parkinson¿s disease. Participants were people with PD (n = 91) and carers who are family members (n = 83). The participants filled in a questionnaire which integrated the following scales: Quality of Life Scale, the Psychosocial Adjustment to Illness Scale PAIS-SR, the Brief Cope Scale and the Benefit Finding Scale. In this phase, multiple regression analyses and structural equation modelling were done, in order to determine how the variables which were measured in the questionnaires influence the psychosocial adjustment to illness and quality of life in PD patients and family carers. Among the findings, it should be noted that the variable coping was identified as being one of the main predictors of patients¿ psychosocial adjustment to illness (Adjusted R2 = 0.421; p < 0.001) and of family carers (Adjusted R2 = 0.271; p = 0.001); and that psychosocial adjustment to illness was significantly related to the patients¿ quality of life (Adjusted R2 = 0.660; p < 0.001) and the family carers¿ quality of life (Adjusted R2 = 0.414; p < 0.001). Also, the results of the structural equation modelling established the existence of influences between the quality of life of patients and family carers (p < 0.001). Therefore, in the Qualitative Phase, focus groups were developed (n = 3) in order to explore the area of coping in more depth, and to know how sufferers of PD, family carers and health professionals perceived the idea of designing an intervention aimed at improving how to cope and live with PD, in the sector being studied. The participants were people with PD (n = 9) and relatives (n = 8) and health professionals (n = 5). In this qualitative phase, a content analysis was carried out, from which two themes emerged: ¿The road to coping with illness¿ and ¿Learning to live with Parkinson¿s disease¿. The findings of the first theme, ¿The road to coping with illness,¿ demonstrated the importance of coping with PD, for both sufferers and their family members, and also the coping skills that they used to improve living with PD. Likewise, this point also showed that coping with the illness was a key step towards psychosocial adjustment and living with PD, which confirmed the findings of the previous quantitative phase. Nevertheless, the participants in this phase also noted that coping with an illness was a complex process due to it being influenced by numerous factors, among which they highlighted spiritual values and deficiencies in the healthcare they received. The second theme ¿Learning to live with Parkinson¿s disease¿ found that the participants supported the idea of developing a healthcare intervention to improve coping skills for people with PD and their family carers. The findings served to define the intervention, which was subsequently designed. Finally, in the study which was carried out in this doctoral thesis, a multidisciplanary healthcare intervention was designed which focused on enabling people with PD and their family carers to acquire coping skills which would help their psychosocial adjustment to PD, thus having an impact on their quality of life. The design of this intervention was based on the integration of the quantitative and qualitative phase results of the study, as well as on the results of discussions and observations with professionals within the area of clinical practice.