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Background: Health and social care systems face difficulties in managing multimorbidity, disease burden and complex needs in long-term conditions such as Parkinson's disease. Objective: This study aimed to develop a European understanding of how health and social care professionals can collaborate with stakeholders from different organizations and sectors to enhance the management of Parkinson's disease in a community setting by identifying the existing gaps in this process and how people with Parkinson's disease and their family carers could benefit from these partnerships. Methods: A mixed-methods sequential study was conducted in Denmark, Norway, Spain and the United Kingdom. The findings from the qualitative phase are presented. Individual semistructured interviews were analysed using Braun's and Clarke's thematic analysis. A meta-ethnography approach was used to analyse and synthesize cross-national findings. Results: A total of 41 healthcare professionals and 39 stakeholders from different disciplines and sectors were interviewed in the four countries. The participants acknowledged a lack of awareness of available resources and poor communication between the different support systems in the management of Parkinson's disease. To promote multiagency collaborations, the participants highlighted the need to organize services along the Parkinson's disease journey, patient involvement and strategic involvement of carers in organizing resources and Parkinson's disease care pathways. According to the participants, the benefits from multiagency partnerships could lead to an enhanced continuity of care and specialized knowledge, mobilization of resources in the community, personalized support and improved access to services. Conclusions: Policymakers are called upon to create formal structures that facilitate multisectoral collaborations to promote an integrated system of care for the management of Parkinson's disease in the community. To address this challenge, we propose five strategies showing how organizations can work together to optimize the use of resources and enhance the management of Parkinson's disease throughout the illness trajectory. Patient or public contribution: Patient and Public Involvement groups made up of stakeholders, healthcare professionals, patients with Parkinson's disease and family carers participated in the design of the study, the development of the interview guides and the validation of the findings. This work was supported by the EU Joint Programme-Neurodegenerative Disease Research (JPND). In Norway, the work was funded by the Research Council of Norway (grant number: 299762) and the DAM Foundation (project number FO296567). In Denmark, the work was funded by the Innovation Fund Denmark. In the United Kingdom, the work was funded by the Alzheimer's Society (grant number: 470). The Autonomous Universityof Madrid and the Ministry of Universities of the Spanish Government (Recovery, Transformation and Resilience Plan) were the financing entities of the researcher M. V. Navarta‐Sánchez (Grant number: CA2/RSUE/2021‐00854) Sí

Background: The family caregiver of a person with Alzheimer disease still has, in most cases, negative consequences in their bio-psycho-social sphere, which are related to the acquisition of this role. However, it has been objectified that this fact is not universal in this type of population, as benefits have been obtained in the act of caring through the development of resilience. Given this possibility, and since nurses are the healthcare professionals that support the dyad in both health and disease processes, there is an urgent need of identifying which non-pharmacological interventions could improve or foster resilience in family caregivers of people with Alzheimer disease. Objectives: General objective: To determine which interventions have been useful in order to foster resilience of family caregivers of people with Alzheimer disease. Specific objectives: 1) To determine the concept of resilience applied to family caregivers of people with Alzheimer disease; 2) To identify variables that have been studied together with resilience; 3) To determine the profile of family caregivers of people with Alzheimer disease; 4) To find out the implication of nursing professionals in the development of the intervention; 5) To describe the intervention’s main features. Design: A scoping review of research published in English and Spanish between 2009 and 2022 was undertaken. Medline (PubMed), CinahlPlus, PsycInfo and Cochrane Library were searched to obtain eligible articles. Methods: Data was analysed using an adapted version of Arksey and O’Malley’s methodological framework, having done a previous critical reading of the articles with the CasP and MMAT tools. Contents and intervention techniques were narratively synthesised. Results: Nine articles (5 analytical-experimental, 2 quantitatives and 2 mixed) whose methodology and implementation of interventions were highly heterogeneous were included. Three types of interventions related to the furtherance of resilience in family caregivers of people with Alzheimer disease were identified: meditation, multicomponent psychoeducation and creative art; nurses participated as co-therapists in the last two. Although the concept of resilience presented variations in its definition and assessment, it seems that scientific literature has related it more to a decrease of negative variables (stress, depression) than to the furtherance of other more positive ones (mental health). Conclusions: This scoping review objectifies with low certainty that the interventions that can be useful for the improvement of resilience in family caregivers of people with Alzheimer disease are multicomponent psychoeducation, creative art and meditation. The need of carrying out more high methodological quality research is emphasised, deepening on the definition of the concept of resilience, on the nurses’ role in the activity’s execution process, on the support of the caregiver and on the assessment and maintenance of the outcomes.

Objectives The purpose of this study was to explore the expectations of and experiences with the public healthcare system of domestic partners of people with Parkinson`s disease (PD) in Denmark and Norway. Methods A qualitative exploratory design was applied. The sample consisted of 14 people from Denmark ( n = 9) and Norway ( n = 5) living with a partner with PD. Semi-structured individual interviews were conducted between June and September 2020, digitally recorded, transcribed verbatim and analysed using a reflexive thematic analysis approach combining inductive and deductive approaches. Results The main themes were ‘negotiating systems of support’ and ‘balancing being both a partner and a family carer’. Partners take responsibility for the people with whom they live and attempt to fill gaps in the public healthcare system. The most frequently described needs were more information, service coordination as the illness progressed and acknowledgement of the complex role. Discussion A recommendation for practice is recognition of the complex roles of partners to people with PD and reaching out to both regularly to determine needs. This may enhance the collaboration between partner carers, people with PD and healthcare providers, ensure sustainability of the system and optimise living with PD in the family.

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 journey, Alzheimer´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 Norway

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 models, This 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)

People with Parkinson's disease (PD) may find it difficult to identify and access the wide number of services they need and are entitled to along their complex PD journey. As part of the project OPTIM-PARK - Optimisation of community resources and systems of support to enhance the process of living with Parkinson's Disease, document analysis was developed to create overviews of existing resources and systems of support in Denmark, Norway, Spain and the United Kingdom. Documents on community resources, policies, guidelines and professional recommendations were the main sources of information. They were sought systematically at official websites of the public sector (national and regional levels) and websites of non-governmental organisations and scientific societies; searches were performed in October 2020 and updated in September 2021. A higher-level cross-national content analysis integrated all the country-specific information. Data- and concept-driven coding frames were developed; trial coding and peer review strengthened face validity and reliability. The analysis led to overviews of: (1) Key aims at patient and societal levels. (2) Key elements in form of professional approaches. (3) Community resources. (4) Legally anchored services. In general, clear descriptions of how to implement care pathways and tools to facilitate delivery were missing in the included documents, and pathways and guidelines did not include referral to general social support, social security support or labour and employment support. The results shed light on the complex support systems and resources and can inspire the planning of more comprehensive care pathways for people with PD and other long-term conditions.

It is essential that healthcare and social professionals understand the daily lives of people with chronic diseases, and the variables that influence them. The aim of this study was to identify the determinants influencing the process of living with long-term conditions. To investigate this, an observational, international, cross-sectional study was carried out. A consecutive sample of 1788 Spanish-speaking population living with chronic obstructive pulmonary disease, chronic heart failure and type 2 diabetes mellitus were included. Descriptive statistics and multiple linear regression models were performed. The linear regression models identified that social support (β = 0.39, p &lt, 0.001) and the satisfaction with life (β = 0.37, p &lt, 0.001) were the main determinants in the process of living with a long-term condition (49% of the variance). Age (β = −0.08, p = 0.01) and disease duration (β = 0.07, p = 0.01) were determinants only in the chronic heart failure subgroup, and country was significant in the chronic obstructive pulmonary disease subgroup (β = −0.15, p = 0.002). Satisfaction with life and social support were key determinants influencing the process of living with long-term conditions. As such, those aspects should be included in the design of interventions focused on the achievement of a positive living in people with long-term conditions.

Aim: to report of the crosscultural adaptation and pilot study of the ongoing validation of the Spanish version of the Psychosocial Adjustment to Illness Scale with carers of patients with Parkinson's Disease.Design: crosscultural adaptation and pilot study with a cross-sectional validation design of the Spanish version of the Psychosocial Adjustment to Illness Scale –Carers Methods: 21 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%), 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.

INTRODUCTION The high ill-health burden associated with musculoskeletal (MSK) disease has been widely reported, and various treatment approaches proposed. Increasingly, treatments have sought to reflect personalised care and incorporate self-management (SM). However, the range of SM approaches proposed for foot and ankle MSK problems, and their relative clinical or cost-effectiveness, has not been reviewed. A scoping review is required to understand the need/appropriateness of a systematic review on this topic. METHODS AND ANALYSIS The scoping review will be conducted in line with the PRISMA-ScR framework. We will perform an initial search across two databases to confirm search syntax. We will then complete a full search across three databases (Embase [Ovid], CINAHL [EBSCO], and Medline [EBSCO]) and grey literature (Cochrane Library, The British Library, The Canadian Agency for Drugs and Technologies in Health [CADTH], The Health Foundation, The Kings Fund, and MedNar). We will use a snowballing strategy to review the reference list of retrieved texts, as per inclusion criteria, to identify previously unretrieved texts of potential relevance. In an iterative process, the protocol outlined above will be refined and repeated as new key terms come to light. ETHICS AND DISSEMINATION The scoping review will synthesise what is known and not known about SM approaches for MSK foot and ankle problems. The review will form the first step in outlining future research recommendations and areas of potentially unmet clinical need. The findings will be submitted for publication and shared in written form with stakeholder groups involved in the design of future research.

Introduction Psychosocial adjustment affects the quality of life of patients with Parkinson's disease (PD) and his/her family/carers. However, this is not usually addressed in clinical practice. Objective To evaluate coping skills, psychosocial adjustment and quality of life of patients with PD and their family/carers from a quasiexperiment at baseline time. Method Quasi-experimental study carried out in Primary Care centres to evaluate the impact of a psychoeducational intervention in contrast with an informative intervention. The sample comprised 80 patients with PD and 80 family carers, divided into a control group and an experimental group. The psychosocial adjustment scale PAIS-SR, the coping scale Brief COPE and the quality of life scales PDQ-39 and SQLC were used in the data collection. The analysis of sociodemographic data and Student's t tests was performed using SPSS 23.0. Results The patients and family/carers from the control group and the experimental group noticed a mild impairment in their quality of life and some difficulties in their psychosocial adjustment to illness. Both groups used coping skills with a medium-low frequency. Acceptance was the most used coping skill by patients and family/carers. No statistically significant differences were found between the control group and the experimental group. Conclusions We observed that the quality of life and psychosocial adjustment to their illness was impacted in patients with PD and their family/carers, which could be addressed with psychoeducational interventions focused on developing their coping skills.

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 José Moler acknowledge the financial support received from the project MTM2016-77015-R.

Resumen Objetivo Analizar los instrumentos existentes en la actualidad que evaluan la convivencia del paciente con un proceso cronico o aspectos relacionados con la convivencia. Metodo Se llevo a cabo una revision sistematica de la evidencia disponible en las bases de datos: Medline, CINHAL, PsycINFO, Cochrane Library, Embase y Cuiden. Los criterios que limitaron la busqueda fueron: el idioma, ingles y/o espanol y los estudios llevados a cabo en una poblacion adulta. No se aplico limite de anos de publicacion de los articulos. Resultados Se identificaron y analizaron un total de 16 instrumentos que potencialmente evaluaban la convivencia con un proceso cronico y/o aspectos relacionados con el mismo. En cuanto al nombre del instrumento, 4 evaluaban el concepto convivencia con un proceso cronico, mientras que el resto de instrumentos evaluaban algun aspecto de la convivencia o el significado de convivir con un proceso cronico. Conclusiones Se han identificado diferentes instrumentos para evaluar el dia a dia del paciente con un proceso cronico, asi como aspectos relacionados con el mismo. Despues de esta revision, se considera necesaria la realizacion de futuros estudios de validacion en otras poblaciones y/o contextos para lograr instrumentos validos y fiables que puedan ser empleados en la practica clinica.

Aims 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. This article is protected by copyright. All rights reserved.

Aim: To evaluate the effects of a psychoeducational intervention compared with an education programme to strengthen quality of life, psychosocial adjustment, and coping in people with Parkinson's disease and their informal caregivers. Design: A quasi-experimental study was performed with repeated measures at baseline, after the intervention and 6 months post-intervention. Methods: The study was carried out at seven primary care centres from 2015-2017. A total of 140 people with Parkinson's and 127 informal caregivers were allocated to the experimental and the control groups. The experimental group received a 9-week psychoeducational intervention, whereas the control group received a 5-week education programme. Repeated measures ANOVA were used to test differences in quality of life, psychosocial adjustment, and coping between the experimental and control groups and over time. Results: Patients and informal caregivers in both the experimental and control groups showed significantly better psychosocial adjustment at the post-intervention measurement compared with baseline data. We also found significantly greater quality of life in patients and coping skills in caregivers after the end of the interventions in the experimental and control groups. Nevertheless, no significant differences were identified on the outcomes at the 6-month post-intervention measurement. Conclusion: The effect of the psychoeducational intervention was not different from the effect of the education programme. The strategies applied in both interventions followed a group approach led by a multidisciplinary team covering information about PD, healthy lifestyles, and social resources. They might be easily sustained in Primary Care to improve care for people with Parkinson's and informal caregivers.

(1) Background: When living with one or more long term conditions (LTCs), both the patient and the family experience the impact of the condition at different levels. The family’s needs and perceptions should be considered in the process of caring for people with LTCs. The aim of this review is to understand “the process of living with LTCs” from a family perspective. (2) Methods: A scoping review and narrative synthesis were conducted using a systematic methodology in MEDLINE, CINAHL, Web of Science and PsycINFO, in English and Spanish, including evidence from 2018. (3) Results: A total of 28 articles were included in the review. Acceptance, coping, self-management, integration, and adjustment were key attributes in the process of living with LTCs from the perspective of family caregivers that interrelated in a dynamic way through different mechanisms: being aware of the changing situation, personal networks, information and education, personal conditions, attitude to life and communication. (4) Conclusions: The five attributes that comprise living with LTCs from the perspective of the family caregiver are closely connected of to those of patients living with LTCs; however, self-management and integration have a different meaning and application.

Contains fulltext : 170072.pdf (Publisher’s version ) (Open Access) BACKGROUND: Diabetes has become a challenging health priority globally. Given the tensions of financially burdened health systems in Europe the mobilisation of community resources like voluntary organisations and community groups is seen as a health policy strategy to sustain the management of long-term conditions like diabetes. However, little is known about how this is happening in practice in Europe. OBJECTIVES: To explore diabetes self-management interventions undertaken or promoted by voluntary organisations and community groups in Europe; and describe the types of working relationships between these organisations, European health systems and users when implementing diabetes self-management programmes in different areas. DESIGN: A mixed method study (survey/qualitative interviews) was undertaken. This research formed part of a European project (7th Framework programme of the European Commission) exploring the link between resources, like community organisations, and peoples' capacities to manage long-term conditions. SETTINGS: Six European countries (Bulgaria, Greece, Norway, Spain, the Netherlands and the United Kingdom) participated in the study. Three areas: deprived urban area, a relatively affluent urban area and a deprived rural area were purposefully selected. PARTICIPANTS: Through a purposeful sample and bottom up strategies 749 representatives of voluntary organisations and community groups were recruited from the geographical areas above. Organisations with at least three members, existing for at least one year that could provide information or other type of support directly or indirectly relevant to patients with diabetes were included. METHODS: Participants completed a 15 item questionnaire for the survey (n=749) and a voice recorded semi structured interview (n=300). Data collection focused on the type of activities and roles developed to promote health, and relationships and communication channels between organisations, health services and users. Descriptive and comparative statistical and qualitative content analyses were used. RESULTS: Participants perceived they had better reach of people with health needs than health providers, filled the administration gaps left in their capacity to deal with basic diabetes practical needs, humanized care, and acted as mediators between services and communities. There were significant differences between countries in relation to the types of activities (p-value

Contains fulltext : 174302.pdf (Publisher’s version ) (Open Access) BACKGROUND AND OBJECTIVE: The spread of self-care holds the promise of containing chronic illness burden. Falling within the framework of a FP7 collaborative research project, this paper reports the views of key informants from six countries regarding who the main stakeholders are at different levels in the support system for self-care for patients with chronic illness (SSSC) and how they accomplish their role and collaborate. METHODS: 90 Interviews with purposefully selected key informants from Bulgaria, Greece, the Netherlands, Norway, Spain and United Kingdom were conducted. Interviews involved government and local authorities, politicians, academics, health professionals and private sector representatives. Interviewers followed an expert opinion-based guide. Analysis involved a cross-country examination with thematic analysis and framework method techniques. RESULTS: Key informants described the ideal SSSC as inclusive, interdependent and patient-centred. The following main stakeholders in SSSC were identified: patients, governments, health-care professionals, associations, private companies and the media. In the current SSSCs, collaboration among stakeholders within and across different levels was said to be lacking. Patients were seen as playing a passive subordinate role based on the following: their own attitudes; the paternalistic and medicalized attitudes of the health-care professionals; their misrepresentation by patient associations; and their exposure to the damaging influences of media and industries. CONCLUSIONS: Making SSSC patient-centred constitutes the greatest challenge for European authorities. Strategies must be revised for promoting patient participation. They should undergo changes so as to promote industry and media social responsibility and patient association advocacy capacity.

Introduction: To explore the psychometric attributes of a new Satisfaction with Life Scale (SLS-6) in a wide Spanish-speaking population with Parkinson's disease (PD). Methods: This was an international, cross-sectional study. Several rater-based and patient-reported outcomes measures for evaluation of PD (e.g., Scales for Outcomes in Parkinson's Disease-Motor) and other constructs (e.g., Duke-UNC Functional Social Support Questionnaire, Scale for Living with Chronic Illness) were applied together with the SLS-6. Acceptability, scaling assumptions, reliability, precision, and construct validity were tested. Results: The study included 324 patients from five countries, with age (mean ± standard deviation) 66.67 ± 10.68 years. None of the SLS-6 items had missing values and all acceptability parameters fulfilled the standard criteria. Scaling assumptions allowed the calculation of a summary index from items 2 to 6, complementary to the global evaluation (item 1). For these five items, Cronbach's alpha was 0.85; the corrected item–total correlation 0.53–0.73; inter-item correlation, 0.45–0.70, with an item homogeneity index of 0.55. The standard error of measurement, based on Cronbach's alpha for a single observation, was 3.48. SLS-6 correlations were moderate to strong (rs ? 0.35) with the patient-reported outcomes and weak to moderate with the rater-based assessments used in the study. The SLS-6 total score was significantly different according to PD severity levels established according to Hoehn and Yahr staging, Clinical Impression of Severity Index, and Patient-Based Global Impression of Severity scale. Conclusion: The results suggest that SLS-6 is an easy, feasible, acceptable, consistent, precise and valid measure to evaluate satisfaction with life in PD patients.

Aims and objectives To identify the personal- and disease-related factors that are associated with living with Parkinson's disease. Background Living with Parkinson's disease affects the physical, psychological, social and spiritual areas of the person. Health professionals need to know which factors influence the daily living with Parkinson's disease, in order to facilitate a positive living. Design A multicentre cross-sectional study. Methods A total of 324 patients with Parkinson's disease diagnoses were included in the study through a consecutive case sampling. Data were collected from January-June 2015, in specialised units of movement disorders of public and private and community centres, from Spain, Argentina, Mexico, Ecuador and Cuba. Nine measures were applied to evaluate personal-related factors (age, gender, psychosocial function, satisfaction with life, social support, home economical situation) and Parkinson's disease-related factors (duration of disease, motor symptoms and non-motor symptoms). The STROBE checklist was used to ensure quality reporting during the study (see File S1). Multiple linear regression analysis was carried out. Results Results indicated that social support, followed by satisfaction with life and home economical situation are the only three factors that significantly influence in living with Parkinson's disease. The rest of the factors analysed did not present significant influence in the daily living with this neurodegenerative disease. Conclusion This study highlights the necessity to put more emphasis on the person and his/her daily living with the condition and less on symptoms and treatment. Health professionals need to develop person-centred interventions that also deal with other elements of the experience of living with a long-term condition like Parkinson's disease. Relevance to clinical practice Interventions to foster positive living with Parkinson's disease in clinical practice should integrate strategies to tackle and prevent loneliness and interagency elements to increase community resources and systems of support.

Contains fulltext : 172202.pdf (Publisher’s version ) (Open Access) This paper presents a meta-synthesis of the literature on community-based self-management to support experiences of people diagnosed with type 2 diabetes. The aim was to synthesise findings on both formal and informal self-management support with particular reference to the relevance and influence of the social context operating at different levels. The review forms part of EU-WISE, a project financed through EU's 7th Framework Programme. The review was performed by systematically searching MEDLINE, PubMed, EMBASE, CINAHL, PsycINFO and Web of Science for English language publications between 2005 and 2014 presenting research conducted in Europe on the experiences and perspectives of self-management concerns of patients diagnosed with type 2 diabetes. The search yielded 587 abstracts, which were reduced through search strategy refinement and eligibility and quality criteria to 29 papers that were included in the review. This review highlights the relevance of contextual factors operating at micro- and macro-levels. The synthesis yielded six second-order thematic constructs relating to self-management: sense of agency and identity, the significance and meaning of social networks, minimal disruption of everyday life, economic hardship, the problem of assigning patients' responsibility and structural influences of primary care. Using a line of argument synthesis, these themes were revisited, and a third-order construct, connectivity emerged which refers to how links in daily life are interwoven with peoples' social networks, local communities, economic and ideological conditions in society in a way which support self-management activities. This meta-synthesis indicates a need to heed the notion of connectivity as a means of mobilising and supporting the self-management strategies of people with type 2 diabetes in everyday life.

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.

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 PDQ-39 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.Trial registration:NCT03129425 (ClinicalTrials.gov). Retrospectively registered on April 26, 2017.

Objective To analyse the currently available instruments to assess living with a chronic illness and related aspects. Method A review of the evidence was made using the databases: Medline, CINHAL, PsycINFO, Cochrane Library, Embase and Cuiden. The criteria that limited the search were: the language, English and/or Spanish and studies carried out in an adult population. Years of article publication were not used as a limit. Results A total of 16 instruments were identified and analysed that apparently measured the concept of living with a chronic illness and/or related aspects. According to the name of the instrument, four seemed to evaluate the concept of living with a chronic illness while the rest of the instruments evaluated aspects intrinsically related to the concept of “living with”, such as attributes or the meaning of living with a chronic illness. Conclusions Different instruments were identified to evaluate daily living for the chronically ill patient, as well as related aspects. According to this review, further validation studies are required in other populations and/or contexts in order to achieve valid and reliable instruments that could be used in clinical practice.

Parkinson’s disease (PD) is a long-term condition that affects patients’ and carers’ quality of life. It is important to develop and implement new approaches that bring together health and psychosocial care for people living with chronic illnesses such as PD. The authors emphasise the role of primary care nurses in supporting patients and their informal carers, and outline how practitioners can focus care on patients’ psychosocial as well as physical needs. The article includes a literature review of the process of living with PD and discusses the development and implementation of interventions based on assessments tailored to the individual needs of patients and their carers.

This study proposed a collaborative methodology among university students in different grades in order to find sustainable strategies that are an added value for students, teachers, and society. In daily professional practice, different professionals must develop skills to collaborate and understand each other. For that reality to be sustainable, we believe that experiences must begin in the context of higher education. Social network analysis offers a new perspective on optimizing relationships between university students. The main goal of this study was to analyze students&rsquo, behavior in their networks following an educational intervention and the association with academic performance, resilience and engagement. This was a descriptive quasi-experimental study with pre&ndash, post measures of a cooperative interdisciplinary intervention. Participants comprised 50 nursing and computer engineering students. We measured help, friendship, and negative network centrality, engagement, resilience, and academic performance. No significant differences were observed between pre&ndash, post-intervention centrality measures in the negative network. However, the help and friendship networks presented statistically significant differences between inDegreeN, OutDegreeN and EigenvectorN on the one hand, and resilience and engagement&mdash, but not academic performance&mdash, on the other. Academic performance was solely associated with the team to which participants belonged. Cooperative interdisciplinary learning increased the number of ties and levels of prestige and influence among classmates. Further research is required in order to determine the influence of engagement and resilience on academic performance and the role of negative networks in network formation in education. This study provides important information for proposals on sustainable assessments in the field of higher education.