ABSTRACT
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.
Subject(s)
Adaptation, Psychological , Caregivers/psychology , Parkinson Disease/psychology , Focus Groups , Humans , Parkinson Disease/nursingABSTRACT
OBJETIVO: Explorar los principales aspectos psicosociales que influyen en el afrontamiento de la enfermedad de los pacientes con enfermedad de Parkinson (EP) y sus familiares cuidadores. DISEÑO: Estudio cualitativo exploratorio que constituye la segunda fase de un proyecto de metodología combinada. Emplazamiento: Estudio multicéntrico realizado en la Comunidad Autónoma de Navarra en 2014 con la colaboración de Atención Primaria del Servicio Navarro de Salud-Osasunbidea, la Clínica Universidad de Navarra y la Asociación Navarra de Parkinson. PARTICIPANTES: Un total de 21 participantes: 9 personas con EP, 7 familiares cuidadores y 5 profesionales sociosanitarios. MÉTODO: Los participantes fueron seleccionados mediante muestreo opinático. Se realizaron grupos focales hasta que se consideró adecuada la saturación de los datos. Las transcripciones fueron analizadas por 2 investigadores a través de un análisis de contenido. RESULTADOS: Se identificaron 3 aspectos que influían en cómo pacientes y familiares afrontaban la EP: funcionalidad de la atención sanitaria; entorno familiar, y aceptación de la enfermedad. Considerando estos resultados, se proponen estrategias que podrían promover estos aspectos desde atención primaria, para así mejorar la adaptación a esta enfermedad en pacientes y en sus familiares cuidadores. CONCLUSIONES: La atención sociosanitaria de las personas con EP debería adoptar un enfoque integral que aborde el control de los síntomas del paciente y que responda también a los aspectos psicosociales que influyen en el afrontamiento de la enfermedad, tanto en los pacientes como en sus familiares cuidadores
OBJECTIVE: To explore the main psychosocial aspects which have influence on the coping with the disease in patients with Parkinson's disease (PD) and their family carers. DESIGN: An exploratory qualitative study which constitutes the second phase of a mixedmethods project. SETTING: Multicenter study carried out in Navarre in 2014 in collaboration with Primary Care of Navarre Service of Health-Osasunbidea, Clínica Universidad de Navarra and Navarre Association of Parkinson's patients. PARTICIPANTS: A total of 21 participants: 9 people with PD, 7 family carers and 5 healthcare professionals. METHOD: Participants were selected through purposive sampling. Focus groups were conducted until a suitable saturation data was achieved. Transcriptions were analysed by 2 researchers through a content analysis. RESULTS: Three aspects that affected how patients and family carers coped with PD were identified: features of the clinical practice; family environment, and disease's acceptance. Taking account of these findings, some strategies which could foster these aspects from primary healthcare are suggested in order to improve the adjustment to the disease in patients and family carers. CONCLUSIONS: The healthcare in people with PD should have an integral approach that tackle the symptoms control in patients and also deal with psychosocial aspects that influence on the coping with the disease, in patients and family carers
Subject(s)
Humans , Adaptation, Psychological , Parkinson Disease/psychology , Caregivers/psychology , Models, Organizational , Primary Health Care , Focus Groups , Chronic Disease/psychologyABSTRACT
OBJECTIVE: To explore the main psychosocial aspects which have influence on the coping with the disease in patients with Parkinson's disease (PD) and their family carers. DESIGN: An exploratory qualitative study which constitutes the second phase of a mixed-methods project. SETTING: Multicenter study carried out in Navarre in 2014 in collaboration with Primary Care of Navarre Service of Health-Osasunbidea, Clínica Universidad de Navarra and Navarre Association of Parkinson's patients. PARTICIPANTS: A total of 21 participants: 9 people with PD, 7 family carers and 5 healthcare professionals. METHOD: Participants were selected through purposive sampling. Focus groups were conducted until a suitable saturation data was achieved. Transcriptions were analysed by 2 researchers through a content analysis. RESULTS: Three aspects that affected how patients and family carers coped with PD were identified: features of the clinical practice; family environment, and disease's acceptance. Taking account of these findings, some strategies which could foster these aspects from primary healthcare are suggested in order to improve the adjustment to the disease in patients and family carers. CONCLUSIONS: The healthcare in people with PD should have an integral approach that tackle the symptoms control in patients and also deal with psychosocial aspects that influence on the coping with the disease, in patients and family carers.
Subject(s)
Adaptation, Psychological , Attitude of Health Personnel , Attitude to Health , Caregivers/psychology , Parkinson Disease , Aged , Female , Humans , Male , Middle Aged , Parkinson Disease/therapyABSTRACT
OBJECTIVE: The influence that social conditions and personal attitudes may have on the quality of life (QoL) of Parkinson's disease (PD) patients and informal caregivers does not receive enough attention in health care, as a result of it not being clearly identified, especially in informal caregivers. The aim of this study was to provide a comprehensive analysis of psychosocial adjustment and QoL determinants in PD patients and informal caregivers. METHODS: Ninety-one PD patients and 83 caregivers participated in the study. Multiple regression analyses were performed including benefit finding, coping, disease severity and socio-demographic factors, in order to determine how these aspects influence the psychosocial adjustment and QoL in PD patients and caregivers. RESULTS: Regression models showed that severity of PD was the main predictor of psychosocial adjustment and QoL in patients. Nevertheless, multiple regression analyses also revealed that coping was a significant predictor of psychosocial adjustment in patients and caregivers. Furthermore, psychosocial adjustment was significantly related to QoL in patients and caregivers. Also, coping and benefit finding were predictors of QoL in caregivers but not in patients. CONCLUSIONS: Multidisciplinary interventions aimed at improving PD patients' QoL may have more effective outcomes if education about coping skills, and how these can help towards a positive psychosocial adjustment to illness, were included, and targeted not only at patients, but also at informal caregivers.
Subject(s)
Caregivers/psychology , Parkinson Disease/psychology , Sickness Impact Profile , Adult , Aged , Aged, 80 and over , Cross-Sectional Studies , Female , Humans , Male , Middle AgedABSTRACT
AIMS AND OBJECTIVES: To report an analysis of the concept of Living with chronic illness in adults, using Rodger's evolutionary analytical methodology. BACKGROUND: In the literature, several qualitative studies exist that address the question of Living with chronic illness from the adult patient's perspective. However, the lack of clarity and consensus among the existing studies renders this concept ambiguous when it is analysed in depth. DESIGN: A narrative review. METHODS: A systematic search has been carried out on electronic databases such as Medline (PubMed), Cinahl (Ebsco), Cochrane Library, PsycINFO (Ovid), Embase, Cuiden, Dialnet and Scielo. This was limited to articles published in either Spanish or English, from 2003-2013. RESULTS: Living with chronic illness is a complex, dynamic, cyclic and multidimensional process, and involves the development of five different attributes: Acceptance, Coping, Self-management, Integration and Adjustment. Depending on how these attributes operate, there are four different ways of living which can result from the process of Living with chronic illness: (1) Disavowal, (2) False Normality, (3) The New Normal and (4) Disruption. CONCLUSIONS: This paper contributes to the understanding of the concept 'Living with chronic illness'. Findings in this analysis have to be evaluated with caution and further research is needed on this topic to confirm them. Also, more studies in evaluating how patients live a long-term condition are recommended to foster patient-centred care. RELEVANCE TO CLINICAL PRACTICE: Findings generated from this concept analysis can raise awareness of Living with chronic illness so that this process could be assessed in a correct and uniform way in the clinical community and improved when needed.
Subject(s)
Adaptation, Psychological , Chronic Disease/psychology , Models, Nursing , Adult , Chronic Disease/nursing , Humans , Quality of Life , Self CareABSTRACT
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