Psychosocial adjustment of in-home caregivers of family members with dementia and parkinson's disease: a comparative study

Neurodegenerative diseases such as Parkinson's and dementia are highly prevalent worldwide. People who suffer from these disorders often receive in-home care and assistance from family members, who must dedicate a considerable amount of time to the care recipient. The study of family caregivers' psychosocial adjustment to the degenerative processes of both conditions is of interest due to the implications for the quality of life of both the care receiver and the caregiver, as well as other family members. This study compares the psychosocial adjustment of family members who care for people with dementia and Parkinson's disease and identifies the main sociodemographic variables that affect the processes of adjustment to both conditions. To this end, the Psychosocial Adjustment to Illness Scale (PAIS-SR) and a sociodemographic form were administered to 157 family caregivers in Navarre, Spain. The results show that adjustment to the disease in family caregivers of people with Parkinson's disease and dementia is, in general, satisfactory and related to variables such as place of residence, income, and employment status. The illness itself (Parkinson's or dementia), however, is found to be the most influential variable in the level of psychosocial adjustment.Ignacio García and Jose Moler acknowledge the financial support received from the project MTM2016-77015-R

Internal dynamics within primary care teams in two Spanish regions during the COVID-19 pandemic: a qualitative study

Background: Pandemics and epidemics have represented public health emergencies with severe consequences at a global level. Primary care teams have played a crucial role in disease surveillance and monitoring during the COVID-19 pandemic through early detection, contact tracing, and isolation of positive cases. The objective of this study was to explore the impact of the COVID-19 pandemic on primary care teams regarding their internal dynamics and their professional performance. Methods: Qualitative study carried out between July and December 2020 in two large central and southern Spanish regions (Castilla la Mancha and Madrid). Semi-structured interviews and focus groups were conducted with primary care workers. Data was analysed using thematic content analysis. Participants were accessed using purposive sampling. Results: A total of 53 primary care workers participated in the study, of which 38 were individually interviewed, and 15 participated in three focus groups.The analysis of their experiences revealed two main themes regarding the impact of the COVID-19 pandemic on primary care teams: 1) The need to reorganise traditional roles: Primary care settings closed their doors to the public and their workers restructured their roles to ensure the delivery of essential services; 2) The need to implement a new primary care delivery model: Each primary care team had to self-organise, making sure their reference population was cared for and developing resource optimisation strategies. Conclusions: Primary care teams have quickly adapted their roles and internal dynamics to respond to the demands generated by COVID-19. In the new delivery model, some positive aspects could be highlighted – such as increased communication between professionals and the use of telemedicine for some cases. However, it is important to address the negative impact that the COVID-19 crisis has had on of the main functions of primary care. These measures are necessary to promote well-being in primary care teams, and to provide quality care that addresses the complex and individual needs of each person and reduces inequalities in healthcare deliveryThis work was supported by the FONDO SUPERA COVID-19, organised by Santander Bank, the Spanish National Research Council (CSIC), and the Conference of Rectors of Spanish Universities (CRUE). It aims to fund programs, collaborative projects, and support activities to minimise the impact of the COVID-19 crisis in the health, education, and social sector

Avaliação de uma intervenção educacional (edworkcases) envolvendo casos clínicos e estudantes de Enfermagem: um estudo observacional transversal

Objective: to evaluate the impact of the (edworkcases) educational intervention on students’ evaluation outcomes in their clinical practices, their attitudes towards Nursing diagnoses, and their satisfaction. Method: this study used a cross-sectional observational design. The participants were 69 third-year Nursing students from a public university in Madrid, Spain. The data analysed in the study were the grades obtained by students for their clinical practices, as well as pre-post intervention scores on the Positions on Nursing Diagnosis Scale and a satisfaction survey. A means comparison by participation in the project (yes/no) was carried out using Student’s t-test. A means comparison by professor was conducted using Kruskal-Wallis tests. Results: participation rate: 72.4%; 92% of the participants were women; median age = 21 years old. Statistically significant differences were found between participants and non-participants in terms of mean score in the Overall Evaluation and in the Case Study Evaluation, with higher scores found among the group of participants. The mean score for attitudes towards Nursing diagnoses was 99.9 (SD=2.8) before the intervention and 111.1 (SD=2.9) after the intervention [95% CI: 3.3-19.2]. Conclusion: the use of (edworkcases) as part of the practical training was considered satisfactory, enabling theory and practice to be combined and improving students’ attitudes towards Nursing diagnoses.Objetivo: evaluar el efecto de la intervención educativa (edworkcases) sobre los resultados de la evaluación de los estudiantes en sus prácticas clínicas, sus actitudes hacia los diagnósticos de Enfermería y su nivel de satisfacción. Método: en este estudio se empleó un diseño transversal y observacional. Los participantes fueron 68 estudiantes de tercer año de la carrera de Enfermería de una universidad pública de Madrid, España. Los datos que se analizaron en el estudio fueron las calificaciones obtenidas por los estudiantes en sus prácticas clínicas, al igual que las puntuaciones antes y después de la intervención en la Escala de Posicionamiento ante el Diagnóstico de Enfermería y en una encuesta de satisfacción. Se utilizó la prueba t de Student para realizar una comparación de valores medios por participación en el proyecto (sí/no). La comparación de valores medios por profesor se llevó a cabo por medio de pruebas Kruskal-Wallis. Resultados: índice de participación: 72,4%; el 92% de los participantes eran mujeres, con una mediana de edad de 21 años. Se encontraron diferencias estadísticamente significativas entre participantes y no participantes en cuanto a la puntuación media en la Evaluación General y en la Evaluación de Estudios de Caso, con puntuaciones más elevadas en el grupo de participantes. Las puntuaciones medias correspondientes a las actitudes con respecto a los diagnósticos de Enfermería fueron 99,9 (SD=2,8) y 111.1 (SD=2.9) antes y después de la intervención, respectivamente [IC 95%: 3,3-19,2]. Conclusión: se consideró satisfactorio utilizar edworkcases como parte te la capacitación práctica, lo que permitió combinar teoría y práctica y mejorar las actitudes de los estudiantes con respecto a los diagnósticos de Enfermería.Objetivo: avaliar o impacto da intervenção educacional (edworkcases) nos resultados da avaliação dos alunos em suas práticas clínicas, suas atitudes em relação aos diagnósticos de Enfermagem e sua satisfação. Método: estudo observacional transversal, realizado com 69 estudantes do terceiro ano de Enfermagem de uma universidade pública de Madri, Espanha. Os dados analisados foram obtidos das notas dos alunos em suas práticas clínicas, bem como, os escores pré- e pós-intervenção na Escala de Posições frente ao Diagnóstico de Enfermagem e uma pesquisa de satisfação. A comparação de médias por participação no projeto (sim/não) foi realizada por meio do teste t de Student. A comparação de médias por professor foi realizada por meio de testes de Kruskal-Wallis. Resultados: taxa de participação: 72,4%; 92% dos participantes eram mulheres; mediana de idade de 21 anos. Foram encontradas diferenças estatisticamente significativas entre participantes e não participantes em termos de pontuação média na Avaliação Geral e na Avaliação do Estudo de Caso, com maiores pontuações encontradas entre o grupo de participantes. A pontuação média das atitudes em relação aos diagnósticos de Enfermagem foi de 99,9 (DP=2,8) antes da intervenção e 111,1 (DP=2,9) após a intervenção [IC 95%: 3,3-19,2]. Conclusão: a utilização de edworkcases como parte do treinamento prático foi considerada satisfatória, permitindo a articulação teoria e prática e melhorando as atitudes dos alunos em relação aos diagnósticos de Enfermagem

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

International psychometric validation of the Living with Chronic Illness Scale in Spanish-speaking patients with chronic obstructive pulmonary disease

Objectives To validate the Living with Chronic Illness (LW-CI) Scale in patients with chronic obstructive pulmonary disease (COPD). Design Observational, cross-sectional validation study with retest. Acceptability, reliability, precision and construct validity were tested. Setting The study took place in primary and secondary specialised units of public and private hospitals of Spain and Colombia. Participants The study included 612 patients with COPD assessed from May 2018 to May 2019. A consecutive cases sampling was done. Inclusion criteria included: (A) patients with a diagnosis of COPD; (B) native Spanish speaking; (C) able to read and understand questionnaires; and (D) able to provide informed consent. Exclusion criteria included: (A) cognitive deterioration and (B) pharmacological effect or disorder that could disrupt the assessment. Results The LW-CI-COPD presented satisfactory data quality, with no missing data or floor/ceiling effects, showing high internal consistency for all the domains (Cronbach's alpha for the total score 0.92). Test-retest reliability was satisfactory (intraclass correlation coefficient=0.92). The LW-CI-COPD correlated 0.52-0.64 with quality of life and social support measures. The scale demonstrated satisfactory known-groups validity, yielding signifi cantly different scores in patients grouped according to COPD severity levels. Conclusions This has been the first validation study of the LW-CI-COPD. It is a feasible, reliable, valid and precise self-reported scale to measure living with COPD in the Spanish-speaking population. Therefore, it could be recommended for research and clinical practice to measure this concept and evaluate the impact of centred-care interdisciplinary interventions based on the patients' perspective, focused on providing holistic and comprehensive care to patients with COPDMinistry of Science, Innovation and University (FEDER/Ministerio de Ciencia, Innovacion y Universidades -Agencia Estatal de Investigacion)||Universidad de la Saban

Perspectives of people with Parkinson's disease and family carers about disease management in community settings: A cross-country qualitative study

Aim: To explore perceptions of people with Parkinson's disease and family carers about the use and impact of health and social care services, community and voluntary sector resources for the management of Parkinson's disease. Background: Resources from outside the formal health care system and collaborations between different levels and sectors could address the unmet needs of people with Parkinson's disease and their family carers and improve the management of Parkinson's disease in the community setting. Design: A qualitative exploratory study was carried out in Denmark, Norway, Spain and the United Kingdom and was reported using the COREQ. Methods: Individual semi-structured interviews were conducted with people with Parkinson's disease and family carers between May and August 2020. Interviews were digitally recorded, transcribed verbatim and analysed using thematic analysis. A meta-ethnographic approach was used to analyse and synthesise cross-national findings. Results: Forty-seven people with Parkinson's disease and 39 family carers participated in the four countries. Four themes and eight sub-themes emerged: (1) Personalised care for needs throughout the Parkinson's disease journey; (2) Accessibility of different types of support systems (including initiatives to support emotional well-being, physical rehabilitation, information on the healthcare services, voluntary associations and community groups); (3) Multiagency collaborations, a more comprehensive approach; (4) Acknowledgment of people with Parkinson's and family carers own role in Parkinson's disease management. Conclusions: An integrated and person-and-community-centred approach, which includes the participation of the health, social, voluntary and community sectors, is desired by people with Parkinson's disease and their family carers to improve the management of Parkinson's in the community setting. These findings could contribute to the creation of more sustainable care systems at the European level that would better respond to individual and changing needs in people with Parkinson's disease and their family carers, and in other long-term conditions. Patient or Public Contribution: The Patient and Public Involvement groups contributed to the design of the study, the interview guides and validation of findings. Relevance to Clinical Practice: This study will inform the management of Parkinson's disease at the community level and the use of resources not only directly linked to the health system. Taking into account all the actors that provide care and support to people with Parkinson’ disease and family carers facilitates the creation of strategies that better respond to individual needs. Nurses and other health and social care professionals in the community and specialist levels of care should collaborate to develop multisectoral strategies that promote personalised and integrated care throughout the Parkinson's journeyAlzheimer´s Society; Autonomous University of Madrid and the Ministry of Universities of the Spanish Government (Recovery, Transformation and Resilience Plan); DAM Foundation; EU Joint Programme - Neurodegenerative Disease Research; Innovation Fund Denmark; Research Council of Norwa

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

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

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

Living with Chronic Illness Scale: Pilot study in patients with several chronic diseases.

[ES] Objetivo Presentar el estudio piloto de la Escala de Convivencia con un proceso crónico (EC-PC) en pacientes con diabetes mellitus tipo 2, insuficiencia cardiaca crónica, enfermedad pulmonar obstructiva crónica y artrosis. Diseño Estudio observacional, transversal y multicéntrico. Emplazamiento Dos hospitales de atención especializada de Navarra y Madrid. Participantes 64 pacientes con diversos procesos crónicos, mayores de 18 años que acudan a centros de atención primaria y/o consultas externas. Los pacientes con deterioro cognitivo diagnosticado y/o trastornos psiquiátricos fueron excluidos. Intervenciones Las evaluaciones tuvieron una duración media de 15 minutos por paciente. Mediciones principales Se evaluó la variable Convivencia con un proceso crónico, mediante la EC-PC. Se analizó la viabilidad/aceptabilidad, consistencia interna y validez de constructo. Resultados Para la muestra total, la EC-PC mostró una buena viabilidad y aceptabilidad, sin datos faltantes. El coeficiente alfa de Cronbach alcanzó valores entre 0,64 y 0,76, y el índice de homogeneidad fue superior a 0,30 en todos los dominios de la escala. Los valores de validez interna oscilaron entre 0,04 y 0,30. No se encontraron diferencias significativas en la puntuación total de la escala en función del sexo o las diferentes patologías. Los pacientes describieron la escala como sencilla y útil. Conclusiones El estudio piloto de la EC-PC en pacientes con diversos procesos crónicos indica que es una medida breve, de fácil uso, fiable y válida. La EC-PC servirá para conocer de manera individualizada cómo el paciente convive con su proceso crónico y prevenir posibles aspectos negativos del día a día con la enfermedad. [EN] To present the pilot study of the Living with Chronic Illness Scale (EC-PC) in patients with diabetes mellitus type 2, chronic heart failure, chronic obstructive pulmonary disease and osteoarthritis. Observational, cross-sectional and multicenter study. Two specialized hospitals in Navarre and Madrid. 64 patients with several chronic diseases, older than 18 years old, that go to primary health centre and/or outpatients. Patients with cognitive deterioration and/or psychiatric disorders were excluded. Evaluations had an average duration of 15 minutes per patient. Patients completed the EC-PC and a questionnaire related to the scale. Feasibility/acceptability, internal consistency and construct validity was analyzed. For the total sample, the EC-PC showed a good viability and acceptability, without missing data and with almost 100% of the computable data. Cronbach's alpha coefficient reached values between 0.64 and 0.76, and the homogeneity index was higher than 0.30 in all domains of the scale. The values of internal validity ranged between 0.04 and 0.30. No significant differences were found (p> 0.05) in the total score of the scale according to gender or the different pathologies. The patients described the scale as simple and useful. The pilot study of the EC-PC in patients with different chronic illnesses showed that it is a brief, easy to use, reliable and valid measure. The EC-PC will serve to know in an individualized way, how the patient is living with his/her chronic process and to prevent possible negative aspects of the daily living with the disease.El presente proyecto ha sido financiado por el Ministerio de Economía, Industria y Competitividad. CS02017-82691-R. MINECO/AEI/FEDER, UE.S

Managing Parkinson’s during the COVID-19 pandemic: Perspectives from people living with Parkinson’s and health professionals

Objectives: The aim of this study was to understand how people living with Parkinson's and healthcare professionals perceived their care management and interactions with health services were affected during the COVID-19 pandemic. Background: During the COVID-19 pandemic, many governments introduced restrictions and services that support Parkinson's care management had to cease or be delivered remotely. These changes may have had an impact on the well-being of people living with Parkinson's. Methods: A qualitative exploratory UK study was carried out. Semi-structured individual interviews with people living with Parkinson's and health professionals were recorded, transcribed verbatim and analysed using Braun´s and Clarke´s thematic analysis. Eleven patients and 10 health professionals were recruited between April and September 2020. The study was reported using the COREQ. Results: Two main themes were identified. In the first theme, many patients and professionals reported that the COVID-19 pandemic made some people living with Parkinson's feel isolated and vulnerable due to disruptions to their social networks and usual activities related to Parkinson's disease care. However, other patients remained connected with their networks. In the second theme, patients and most professionals mentioned that some clinical practices were cancelled, delayed or transformed to remote consultation. Conclusion: The COVID-19 restrictions had an impact on how people living with Parkinson's managed their care and in their interactions with healthcare services. Health professionals should assess the risk of vulnerability, social isolation, physical inactivity and confidence with remote consultations in people living with Parkinson's. This might inform a rethinking of existing clinical interactions with people living with Parkinson's towards a flexible, sustainable, person-centred care model. Relevance to clinical practice: This study has shown that Parkinson's care management and interactions with healthcare services should provide personalised and flexible support. To meet this challenge, the design of the organisation of health services should include greater involvement of patients and person-centred care modelsThis study was funded by the Alzheimer's Society as part of the Joint Programme for Neurodegenerative Research (JPND); grant number: 470. The Autonomous University of Madrid and the Ministry of Universities of the Spanish Government (Recovery, Transformation and Resilience Plan) were the financing entities of the researcher Dr M Victoria Navarta-Sánchez (Grant number: CA2/ RSUE/2021-00854