First validation study of the living with long term conditions scale (LwLTCs) among English-speaking population living with Parkinson's disease.

INTRODUCTION: Parkinson's disease is the second most prevalent neurodegenerative disease, affecting 10 million people worldwide. Health and social care professionals need to have personalised tools to evaluate the process of living with Parkinson's disease and consequently, plan individualised and targeted interventions. Recently, the English version of the Living with Long term conditions (LwLTCs) scale has been developed filling an important gap related to person-centred tools to evaluate the process of living with long term conditions among English-speaking population. However, no validation studies for testing its psychometric properties have been conducted. AIM: To analyse the psychometric properties of the LwLTCs scale in a wide English-speaking population living with Parkinson's disease. METHODS: Validation study, with an observational and cross-sectional design. The sample was composed of individuals living with Parkinson's disease from non-NHS services in the community. Psychometric properties including feasibility and acceptability, internal consistency, reproducibility, and construct, internal and known-groups validity were tested. RESULTS: A total sample of 241 people living with Parkinson's disease were included. 6 individuals did not complete 1 or 2 items on the scale. Ordinal alpha was 0.89 for the total scale. The intraclass correlation coefficient for the total scale was 0.88. The LwLTCs scale is strongly correlated with scales measuring satisfaction with life (rs=0.67), quality of life (rs=0.54), and moderately correlated with social support (rs=0.45). Statistically significant difference just for therapy and co-morbidity, yet no for gender, employment situation, or lifestyle changes. CONCLUSIONS: The LwLTCs scale is a valid scale to evaluate how the person is living with Parkinson's disease. Future validation studies to prove the repeatability of the total scale and particularly, domains 3-Self-management, and 4-Integration and internal consistency will be needed. Developing further studies on the English version of the LwLTC in people with other long term conditions is also proposed.

Understanding support systems for Parkinson's disease management in community settings: A cross-national qualitative study.

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.

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 models.

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 journey.

The influence of social relationships and activities on the health of adults with obesity: A qualitative study.

BACKGROUND: Obesity in adults is a leading health challenge that causes millions of deaths worldwide and represents a risk factor for developing long-term conditions. Social relationships are one of the multiple drivers shaping obesity and obesity-related practices. However, there is still little evidence as to the processes by which relationships influence the adoption of positive and negative obesity health-related practices-eating, physical activity and alcohol intake. This study aims first to identify the types of relationships relevant to the adoption of practices in adults with obesity and, second, to explore the type of activities these relationships engage with or promote to produce those practices and their potential health consequences. METHODS: Nineteen adults who have or had a history of obesity living in the United Kingdom were interviewed between May 2020 and March 2021. Experiences were explored through semi-structured interviews and network mapping via videoconferencing. Data were analysed using a hermeneutic phenomenology informed thematic analysis. RESULTS: Three main themes were identified: (1) everyday familial routines matter, (2) chasing healthier lifestyles: comparing, modelling and connecting emotionally with friends and (3) healthcare professionals as negative influencers. DISCUSSION AND CONCLUSIONS: Findings show how different types of relationships might shape the risk of developing and losing weight. They uncover the power of informal networks (family and friends) and highlight the potentially negative impact of formal ones (healthcare professionals). Our exploration could add to arguments about the need for stakeholders confronting obesity to be aware of the relevance of everyday social relationships in health and well-being strategies for tackling the issue, in creating collective and individual person-centred long-term sustainable actions. PATIENT AND PUBLIC CONTRIBUTION: Feedback on the tone/content of the interview questions was provided by the two first participants. The results were checked and received feedback from one of the interviewees.

Living with Chronic Illness Scale: International validation through the classic test theory and Rasch analysis among Spanish-speaking populations with long-term conditions.

BACKGROUND: The Living with Chronic Illness (LW-CI) Scale is a comprehensive patient-reported outcome measure that evaluates the complex process of living with long-term conditions. OBJECTIVE: This study aimed to analyse the psychometric properties of the LW-CI scale according to the classic test theory and the Rasch model among individuals living with different long-term conditions. DESIGN: This was an observational, international and cross-sectional study. METHODS: A total of 2753 people from six Spanish-speaking countries living with type 2 diabetes mellitus, chronic obstructive pulmonary disease, chronic heart failure, Parkinson's disease, hypertension and osteoarthritis were included. The acceptability, internal consistency and validity of the LW-CI scale were analysed using the classical test theory, and fit to the model, unidimensionality, person separation index, item local independency and differential item functioning were analysed using the Rasch model. RESULTS: Cronbach's α for the LW-CI scale was .91, and correlation values for all domains of the LW-CI scale ranged from .62 to .68, except for Domain 1, which showed correlation coefficients less than .30. The LW-CI domains showed a good fit to the Rasch model, with unidimensionality, item local independency and moderate reliability providing scores in a true interval scale. Except for two items, the LW-CI scale was free from bias by long-term condition type. DISCUSSION: After some adjustments, the LW-CI scale is a reliable and valid measure showing a good fit to the Rasch model and is ready for use in research and clinical practice. Future implementation studies are suggested. PATIENT AND PUBLIC CONTRIBUTION: Patient and public involvement was conducted before this validation study - in the pilot study phase.

Evaluation of a psychoeducational intervention compared with education in people with Parkinson's disease and their informal caregivers: a quasi-experimental study.

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.

Social network influences and the adoption of obesity-related behaviours in adults: a critical interpretative synthesis review.

BACKGROUND: Obesity is a key risk factor for developing a long-term condition and a leading cause of mortality globally. The limited evidence associated with interventions that currently target obesity-related behaviours demand new approaches to tackle this problem. Given the evidence that social ties are implicated in the gaining and reduction of weight, the use of social networks in interventions is potentially a novel and useful means of tackling this health issue. There is a specific gap in the literature regarding what and how social network properties and processes together with environmental and individual factors influence the adoption of positive and negative obesity-related behaviours in adults. METHODS: To address this gap in developing an integrated and holistic conceptual approach, a critical interpretative synthesis was undertaken following a line of argument synthesis as an analytical strategy. RESULTS: Twenty-four studies were included. The data-driven themes meso-micro network processes, contextual and individual factors, and types of ties and properties were identified individually as components and causes of different health scenarios. Nevertheless, these drivers do not act on their own. As a consequence, developing multi-agent coalitions considering cross-level influences between the data-driven themes are two mechanisms that are created to understand more in-depth how social networks and the environment influence the adoption of obesity-related behaviours. These two new constructs point to a dynamic multilevel set of influences between multiple constructs, developing scenarios where positive and negative health results are identified. CONCLUSIONS: This critical interpretative synthesis offers a new means of exploring the application of social network properties and mechanisms in the 'obesity' field. The synthesizing argument created during the analysis process might be considered by health policy-makers, who might need to contemplate the wider open system of socially connected individuals and harness these forces to design new interventions where social networks and other contextual and individual factors operate together in a complex multilevel environment influencing obesity-related behaviours and practices.

Influencing factors when living with Parkinson's disease: A cross-sectional study.

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.

Stakeholders in support systems for self-care for chronic illness: the gap between expectations and reality regarding their identity, roles and relationships.

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.

Core elements to understand and improve coping with Parkinson's disease in patients and family carers: A focus group study.

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.

Negotiating Diet in Networks: A Cross-European Study of the Experiences of Managing Type 2 Diabetes.

Food and diet are central aspects of diabetes self-management but the relevance of social networks for the way people are supported in their management of type 2 diabetes is often under-acknowledged. In this article, we aimed to explore the coalescences between these two phenomena among people with type 2 diabetes to increase knowledge of interactions within social network related to daily diet. The article is based on 125 qualitative interviews with individuals with type 2 diabetes from five European countries. Based on assumptions that people with chronic illnesses reshape relationships through negotiation, we analyzed negotiations of food at different levels of network. The respondents' reflections indicate that there are complex negotiations that influence self-management and food, including support, knowledge, and relationships within families; attention and openness in social situations; and the premises and norms of society.

[Psychosocial strategies to strengthen the coping with Parkinson's disease: Perspectives from patients, family carers and healthcare professionals]. / Estrategias psicosociales para fortalecer el afrontamiento de la enfermedad de Parkinson: perspectiva de pacientes, familiares y profesionales sociosanitarios.

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.

Factors influencing psychosocial adjustment and quality of life in Parkinson patients and informal caregivers.

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.

Dynamics and nature of support in the personal networks of people with type 2 diabetes living in Europe: qualitative analysis of network properties.

BACKGROUND: Living with and self-managing a long-term condition implicates a diversity of networked relationships. This qualitative study examines the personal communities of support of people with type 2 diabetes. METHODS: We conducted 170 biographical interviews in six European countries (Bulgaria, Greece, the Netherlands, Norway, Spain and UK) to explore social support and networks. Analysis was framed with reference to three predetermined social support mechanisms: the negotiation of support enabling engagement with healthy practices, navigation to sources of support and collective efficacy. Each interview was summarized to describe navigation and negotiation of participants' networks and the degree of collective efficacy. RESULTS: Analysis highlighted the similarities and differences between countries and provided insights into capacities of networks to support self-management. The network support mechanisms were identified in all interviews, and losses and gains in networks impacted on diabetes management. There were contextual differences between countries, most notably the impact of financial austerity on network dynamics. Four types of network are suggested: generative, diverse and beneficial to individuals; proxy, network members undertook diabetes management work; avoidant, support not engaged with; and struggling, diabetes management a struggle or not prioritized. CONCLUSIONS: It is possible to differentiate types of network input to living with and managing diabetes. Recognizing the nature of active, generative aspects of networks support is likely to have relevance for self-management support interventions either through encouraging continuing development and maintenance of these contacts or intervening to address struggling networks through introducing the means to connect people to additional sources of support.

Meso level influences on long term condition self-management: stakeholder accounts of commonalities and differences across six European countries.

BACKGROUND: European countries are increasingly adopting systems of self -care support (SMS) for long term conditions which focus on enhancing individual, competencies, skills, behaviour and lifestyle changes. To date the focus of policy for engendering greater self- management in the population has been focused in the main on the actions and motivations of individuals. Less attention has been paid to how the broader influences relevant to SMS policy and practice such as those related to food production, distribution and consumption and the structural aspects and economics relating to physical exercise and governance of health care delivery systems might be implicated in the populations ability to self- manage. This study aimed to identify key informants operating with knowledge of both policy and practice related to SMS in order to explore how these influences are seen to impact on the self-management support environment for diabetes type 2. METHODS: Ninety semi-structured interviews were conducted with key stakeholder informants in Bulgaria, Spain, Greece, Norway, Netherlands and UK. Interviews were transcribed and analysed using thematic and textual analysis. RESULTS: Stakeholders in the six countries identified a range of influences which shaped diabetes self-management (SM). The infrastructure and culture for supporting self- management practice is viewed as driven by political decision-makers, the socio-economic and policy environment, and the ethos and delivery of chronic illness management in formal health care systems. Three key themes emerged during the analysis of data. These were 1) social environmental influences on diabetes self-management 2) reluctance or inability of policy makers to regulate processes and environments related to chronic illness management 3) the focus of healthcare system governance and gaps in provision of self-management support (SMS). Nuances in the salience and content of these themes between partner countries related to the presence and articulation of dedicated prevention and self- management policies, behavioural interventions in primary care, drug company involvement and the impact of measures resulting from economic crises, and differences between countries with higher versus lower social welfare support and public spending on shaping illness management. CONCLUSIONS: The results suggest reasons for giving increasing prominence to meso level influences as a means of rebalancing and improving the effectiveness of implementing an agenda for SMS. There is a need to acknowledge the greater economic and policy challenging environment operating in some countries which act as a source of inequality between countries in addressing SMS for chronic illness management and impacts on people's capacity to undertake self-care activities.

Living with chronic illness in adults: a concept analysis.

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.

Social support systems as determinants of self-management and quality of life of people with diabetes across Europe: study protocol for an observational study.

BACKGROUND: Long-term conditions pose major challenges for healthcare systems. Optimizing self-management of people with long-term conditions is an important strategy to improve quality of life, health outcomes, patient experiences in healthcare, and the sustainability of healthcare systems. Much research on self-management focuses on individual competencies, while the social systems of support that facilitate self-management are underexplored. The presented study aims to explore the role of social systems of support for self-management and quality of life, focusing on the social networks of people with diabetes and community organisations that serve them. METHODS: The protocol concerns a cross-sectional study in 18 geographic areas in six European countries, involving a total of 1800 individuals with diabetes and 900 representatives of community organisations. In each country, we include a deprived rural area, a deprived urban area, and an affluent urban area. Individuals are recruited through healthcare practices in the targeted areas. A patient questionnaire comprises measures for quality of life, self-management behaviours, social network and social support, as well as individual characteristics. A community organisations' survey maps out interconnections between community and voluntary organisations that support patients with chronic illness and documents the scope of work of the different types of organisations. We first explore the structure of social networks of individuals and of community organisations. Then linkages between these social networks, self-management and quality of life will be examined, taking deprivation and other factors into account. DISCUSSION: This study will provide insight into determinants of self-management and quality of life in individuals with diabetes, focusing on the role of social networks and community organisations.

Diabetes self-management arrangements in Europe: a realist review to facilitate a project implemented in six countries.

BACKGROUND: Self-management of long term conditions can promote quality of life whilst delivering benefits to the financing of health care systems. However, rarely are the meso-level influences, likely to be of direct relevance to these desired outcomes, systematically explored. No specific international guidelines exist suggesting the features of the most appropriate structure and organisation of health care systems within which to situate self-management approaches and practices. This review aimed to identify the quantitative literature with regard to diabetes self-management arrangements currently in place within the health care systems of six countries (The United Kingdom, The Netherlands, Norway, Spain, Bulgaria, and Greece) and explore how these are integrated into the broader health care and welfare systems in each country. METHODS: The methodology for a realist review was followed. Publications of interest dating from 2000 to 2013 were identified through appropriate MeSH terms by a systematic search in six bibliographic databases. A search diary was maintained and the studies were assessed for their quality and risk of bias. RESULTS: Following the multi-step search strategy, 56 studies were included in the final review (the majority from the UK) reporting design methods and findings on 21 interventions and programmes for diabetes and chronic disease self-management. Most (11/21, 52%) of the interventions were designed to fit within the context of primary care. The majority (11/21, 52%) highlighted behavioural change as an important goal. Finally, some (5/21, 24%) referred explicitly to Internet-based tools. CONCLUSIONS: This review is based on results which are derived from a total of at least 5,500 individuals residing in the six participating countries. It indicates a policy shift towards patient-centred self-management of diabetes in a primary care context. The professional role of diabetes specialist nurses, the need for multidisciplinary approaches and a focus on patient education emerge as fundamental principles in the design of relevant programmes. Socio-economic circumstances are relevant to the capacity to self-manage and suggest that any gains and progress will be hard to maintain during economic austerity. This realist review should be interpreted within the wider context of a whole systems approach regarding self-care support and chronic illness management.

Interventions to Foster Resilience in Family Caregivers of People with Alzheimer's Disease: A Scoping Review.

The family caregiver of a person with Alzheimer's disease still experiences, in most cases, negative consequences in their biopsychosocial environment, which are related to the acquisition of this role. However, it has been observed that this fact is not universal in this type of population since benefits can be obtained in the act of caring through the development of resilience. Given this possibility and given that nurses are the health professionals who support people in this illness process, there is an urgent need to identify which non-pharmacological interventions could improve or promote resilience in family caregivers of people with Alzheimer's disease. Therefore, our overall objective was to determine which interventions are useful in promoting resilience in family caregivers of people with Alzheimer's disease through a scoping review. The data were analysed using an adapted version of Arksey and O'Malley's methodological framework, after critically reading the articles with the CasP and MMAT tools. Nine articles were included (five analytical experimental, two quantitative and two mixed). Three types of interventions related to promoting resilience in family caregivers of people with Alzheimer's disease were identified: meditation, multicomponent psychoeducation and creative art; nurses participated as co-therapists in the last two.