6 research outputs found
A pilot study on the Spanish version of the Psychosocial Adjustment to Illness Scale (PAIS‐SR) with carers of people with Parkinson's disease
Aim: To report the cross-cultural adaptation and pilot study of the ongoing validation of the Spanish version of the Psychosocial Adjustment to Illness Scale with carers of people with Parkinson's disease.
Design: Cross-cultural adaptation and pilot study with a cross-sectional validation design of the Spanish version of the Psychosocial Adjustment to Illness Scale - Carers.
Methods: Twenty-one carers of people with Parkinson's disease from a Primary Care practice in Spain were recruited and completed the PAIS-Carers, the SF-36 Health Survey, the Brief COPE Inventory and an assessment form. SPSS 23.0 was used to determine viability/acceptability and preliminary aspects of internal consistency of the instrument.
Results: Five of the seven domains presented floor effect (71.42%), and only one presented ceiling effect (14.28%). The internal consistency of the scale and domains showed acceptable values (over 0.7). The content validity of the Spanish version seemed satisfactory with positive comments in general from participants
Elementos clave en el proceso de convivencia con la enfermedad de Parkinson de pacientes y familiares cuidadores
Fundamento. La enfermedad de Parkinson produce un impacto considerable en la vida de las personas. Es necesario
identificar los elementos clave que influyen en el proceso de
convivencia con la enfermedad de Parkinson para que los profesionales de la salud puedan ayudar a los pacientes y sus familias a convivir lo mejor posible con los cambios y limitaciones
producidos por la enfermedad.
Material y método. Se llevó a cabo un estudio cualitativo
descriptivo. Este estudio se corresponde con la primera fase
de un diseño exploratorio secuencial (Mixed-methods) que
incluye a su vez una fase cuantitativa. Se realizó un proyecto
multicéntrico. Para la recogida de datos se aplicó un muestreo
de conveniencia y se utilizó una entrevista semi-estructurada
realizada individualmente a pacientes y familiares cuidadores
y dos cuestionarios para pacientes: la Escala de Hoehn & Yahr
y el Cuestionario PDNMS. Se realizó un análisis de contenido de
las entrevistas y estadístico descriptivo de los cuestionarios.
Resultados. La muestra la constituyeron 46 participantes. Se
identificaron tres elementos clave en el proceso de convivencia
con la enfermedad de Parkinson: aceptación, adaptación y automanejo. Estos elementos condicionaron dos modos de convivencia con la enfermedad de Parkinson: una convivencia positiva, caracterizada por sentimientos de armonía, equilibrio,
y naturalidad; y una convivencia negativa caracterizada por
sentimientos de frustración, pérdida de control y autoestima.
Conclusiones. Es esencial que los profesionales de la salud
conozcan a fondo estos elementos, así como los factores que
los favorecen o dificultan. En la medida que se propicie la investigación en este ámbito y se identifiquen intervenciones
efectivas se mejorará la atención integral de la personas en
consonancia con las nuevas directrices para la cronicidad.Background. Parkinson’s disease has a considerable impact
on people’s lives. It is necessary to identify the key elements
that influence the process of living with Parkinson’s disease so
that health professionals can help patients and their relatives
to live as well as possible with the changes and limitations produced by the disease.
Material and methods. A qualitative descriptive study was realized. This study corresponded to the first phase of a sequential, exploratory design (mixed method) that in turn included a
quantitative phase. A multicentre project was carried out. Convenience sampling was applied to collect data, a semi-structured interview was realized individually with patients and carer-relatives and two questionnaires with patients: the Hoehn
& Yahr scale and the PDNMS questionnaire. Content analysis
of the interviews and a statistical description of the questionnaires were used.
Results. The sample was made up of 46 participants. Three
key elements were identified in the process of living with
Parkinson’s disease: acceptance, adaptation and self-management. These elements conditioned the modes of living
with Parkinson’s disease: positive living, characterized by
feelings of harmony, balance and naturalness; negative living
characterized be feelings of frustration, loss of control and
self-esteem.
Conclusions. It is essential for health professionals to have a
deep understanding of these elements, as well as of the factors
that favor or hinder them. To the extent that research in this
field progresses and effective interventions are identified, comprehensive patient care will be improved in consonance with
the new directives for chronicity
Implementation of a multidisciplinary psychoeducational intervention for Parkinson's disease patients and carers in the community: study protocol
Background: Parkinson’s disease progressively limits patients at different levels and as a result family members play
a key role in their care. However, studies show lack of an integrative approach in Primary Care to respond to the
difficulties and psychosocial changes experienced by them. The aim of this study is to evaluate the effects of a
multidisciplinary psychoeducational intervention focusing on improving coping skills, the psychosocial adjustment
to Parkinson’s disease and the quality of life in patients and family carers in a Primary Care setting.
Methods: This quasi-experimental study with control group and mixed methods was designed to evaluate a
multidisciplinary psychoeducational intervention. Based on the study power calculations, 100 people with
Parkinson’s disease and 100 family carers will be recruited and assigned to two groups. The intervention group will
receive the ReNACE psychoeducational intervention. The control group will be given a general educational
programme. The study will be carried out in six community-based health centres. The results obtained from the
two groups will be collected for evaluation at three time points: at baseline, immediately after the intervention and
at 6 months post-intervention. The results will be measured with these instruments: the Quality of Life Scale PDQ39 for patients and the Scale of Quality of Life of Care-givers SQLC for family carers, and for all participants the
Psychosocial Adjustment to Illness scale and the Brief COPE Inventory. Focus groups will be organised with some
patients and family carers who will have received the ReNACE psychoeducational intervention and also with the
healthcare professionals involved in its development.
Discussion: An important gap exists in the knowledge and application of interventions with a psychosocial
approach for people with PD and family carers as a whole. This study will promote this comprehensive approach in
Primary Care, which will clearly contribute in the existing knowledge and could reduce the burden of PD for
patients and family carers, and also in other long-term conditions
Elementos clave en el proceso de convivencia con la enfermedad de Parkinson de pacientes y familiares cuidadores
Fundamento. La enfermedad de Parkinson produce un impacto considerable en la vida de las personas. Es necesario
identificar los elementos clave que influyen en el proceso de
convivencia con la enfermedad de Parkinson para que los profesionales de la salud puedan ayudar a los pacientes y sus familias a convivir lo mejor posible con los cambios y limitaciones
producidos por la enfermedad.
Material y método. Se llevó a cabo un estudio cualitativo
descriptivo. Este estudio se corresponde con la primera fase
de un diseño exploratorio secuencial (Mixed-methods) que
incluye a su vez una fase cuantitativa. Se realizó un proyecto
multicéntrico. Para la recogida de datos se aplicó un muestreo
de conveniencia y se utilizó una entrevista semi-estructurada
realizada individualmente a pacientes y familiares cuidadores
y dos cuestionarios para pacientes: la Escala de Hoehn & Yahr
y el Cuestionario PDNMS. Se realizó un análisis de contenido de
las entrevistas y estadístico descriptivo de los cuestionarios.
Resultados. La muestra la constituyeron 46 participantes. Se
identificaron tres elementos clave en el proceso de convivencia
con la enfermedad de Parkinson: aceptación, adaptación y automanejo. Estos elementos condicionaron dos modos de convivencia con la enfermedad de Parkinson: una convivencia positiva, caracterizada por sentimientos de armonía, equilibrio,
y naturalidad; y una convivencia negativa caracterizada por
sentimientos de frustración, pérdida de control y autoestima.
Conclusiones. Es esencial que los profesionales de la salud
conozcan a fondo estos elementos, así como los factores que
los favorecen o dificultan. En la medida que se propicie la investigación en este ámbito y se identifiquen intervenciones
efectivas se mejorará la atención integral de la personas en
consonancia con las nuevas directrices para la cronicidad.Background. Parkinson’s disease has a considerable impact
on people’s lives. It is necessary to identify the key elements
that influence the process of living with Parkinson’s disease so
that health professionals can help patients and their relatives
to live as well as possible with the changes and limitations produced by the disease.
Material and methods. A qualitative descriptive study was realized. This study corresponded to the first phase of a sequential, exploratory design (mixed method) that in turn included a
quantitative phase. A multicentre project was carried out. Convenience sampling was applied to collect data, a semi-structured interview was realized individually with patients and carer-relatives and two questionnaires with patients: the Hoehn
& Yahr scale and the PDNMS questionnaire. Content analysis
of the interviews and a statistical description of the questionnaires were used.
Results. The sample was made up of 46 participants. Three
key elements were identified in the process of living with
Parkinson’s disease: acceptance, adaptation and self-management. These elements conditioned the modes of living
with Parkinson’s disease: positive living, characterized by
feelings of harmony, balance and naturalness; negative living
characterized be feelings of frustration, loss of control and
self-esteem.
Conclusions. It is essential for health professionals to have a
deep understanding of these elements, as well as of the factors
that favor or hinder them. To the extent that research in this
field progresses and effective interventions are identified, comprehensive patient care will be improved in consonance with
the new directives for chronicity
Implementation of a multidisciplinary psychoeducational intervention for Parkinson's disease patients and carers in the community: study protocol
Background: Parkinson’s disease progressively limits patients at different levels and as a result family members play
a key role in their care. However, studies show lack of an integrative approach in Primary Care to respond to the
difficulties and psychosocial changes experienced by them. The aim of this study is to evaluate the effects of a
multidisciplinary psychoeducational intervention focusing on improving coping skills, the psychosocial adjustment
to Parkinson’s disease and the quality of life in patients and family carers in a Primary Care setting.
Methods: This quasi-experimental study with control group and mixed methods was designed to evaluate a
multidisciplinary psychoeducational intervention. Based on the study power calculations, 100 people with
Parkinson’s disease and 100 family carers will be recruited and assigned to two groups. The intervention group will
receive the ReNACE psychoeducational intervention. The control group will be given a general educational
programme. The study will be carried out in six community-based health centres. The results obtained from the
two groups will be collected for evaluation at three time points: at baseline, immediately after the intervention and
at 6 months post-intervention. The results will be measured with these instruments: the Quality of Life Scale PDQ39 for patients and the Scale of Quality of Life of Care-givers SQLC for family carers, and for all participants the
Psychosocial Adjustment to Illness scale and the Brief COPE Inventory. Focus groups will be organised with some
patients and family carers who will have received the ReNACE psychoeducational intervention and also with the
healthcare professionals involved in its development.
Discussion: An important gap exists in the knowledge and application of interventions with a psychosocial
approach for people with PD and family carers as a whole. This study will promote this comprehensive approach in
Primary Care, which will clearly contribute in the existing knowledge and could reduce the burden of PD for
patients and family carers, and also in other long-term conditions