Family caregivers' involvement in caring for frail older family members using welfare technology: a qualitative study of home care in transition.

BACKGROUND: Demographic, economic and organisational changes challenge home care services. Increased use of welfare technology and involvement of family members as co-producers of care are political initiatives to meet these challenges. However, these initiatives also involve ethical aspects. METHOD: The aim of this qualitative study was to explore family caregivers' experience of involvement and possible ethical aspects of caring for frail older family members receiving home care services supported by welfare technology. This study used a qualitative explorative and descriptive design within a phenomenological-hermeneutical approach. Sixteen interviews with eighteen family caregivers were conducted. The participants were sons, daughters, siblings and spouses of frail older people receiving home care services with the support of welfare technology. Data were analysed using reflexive thematic analysis. The COREQ checklist was used. RESULTS: The analysis led to five main themes. First, the family caregivers' experienced caring as meaningful but increasingly demanding concerning the changes in home care services. Second, they experienced a change in relationships, roles, tasks, and responsibilities related to more family involvement and the use of welfare technology. This also challenged their sense of autonomy. However, welfare technology helped them deal with responsibilities, especially safety. The family caregivers requested early involvement, dialogue for care decisions, more cooperation and support from health professionals. Third, the participants experienced that health professionals decided the conditions for co-production without discussion. Their need for information and knowledge about welfare technology were not met. Fourth, the family caregivers felt that the health professionals did not adequately recognise their unique knowledge of the care receiver and did not use this knowledge for customising the welfare technology to the care receiver and their families. Fifth, the family caregivers expressed concern about service and welfare technology inequality in home care services. CONCLUSIONS: Co-production in the involvement of family caregivers in care is still not an integral part of home care service. Welfare technology was appreciated, but the family caregivers called for early involvement to ensure successful and safe implementation and use. More attention needs to be given to ethical concerns about the change in relations, transfer of tasks and responsibility, and risk of inequality.

'The sofa is my base in daily life': The experience of long-term, pelvic girdle pain after giving birth.

In this study, we investigated how women struggling with long-term pelvic girdle pain after giving birth experienced and coped in their daily life. We conducted individual interviews with 9 women with pain between 3 and 26 years after giving birth. We found that pelvic girdle pain results in significant challenges, influencing women's relationships with their children, partners and wider network. The pain demands careful planning and time for rest, influences women's ability to work, and creates feelings of isolation and shame. The informants connect the lack of formal diagnostic criteria for the condition to the low level of societal recognition.

'They just came with the medication dispenser'- a qualitative study of elderly service users' involvement and welfare technology in public home care services.

BACKGROUND: Public home care for the elderly is a key area in relation to improving health care quality. It is an important political goal to increase elderly people's involvement in their care and in the use of welfare technology. The aim of this study was to explore elderly service users' experience of user involvement in the implementation and everyday use of welfare technology in public home care services. METHOD: This qualitative study has an explorative and descriptive design. Sixteen interviews of service users were conducted in five different municipalities over a period of six months. The data were analysed using reflexive thematic analysis. RESULTS: Service users receiving public home care service are not a homogenous group, and the participants had different wishes and needs as regards user involvement and the use of welfare technology. The analysis led to four main themes: 1) diverse preferences as regards user involvement, 2) individual differences as regards information, knowledge and training, 3) feeling safe and getting help, and 4) a wish to stay at home for as long as possible. CONCLUSION: The results indicated that user involvement was only to a limited extent an integral part of public home care services. Participants had varying insight into and interest in welfare technology, which was a challenge for user involvement. User involvement must be facilitated and implemented in a gentle way, highlighting autonomy and collaboration, and with the focus on respect, reciprocity and dialogue.

Guidelines as governance: Critical reflections from a documentary analysis of guidelines to support user involvement in research.

Although guidelines to regulate user involvement in research have been advocated and implemented for several years, literature still describes the process as challenging. In this qualitative study, we take a critical view on guidelines that are developed to regulate and govern the collaboration process of user involvement in research. We adapt a social constructivist view of guidelines and our aim is to explore how guidelines construct the perception of users and researchers and thus the process of involvement. Twenty-two guidelines published between 2006 and 2019 were analyzed iteratively. The analysis focuses on values which are emphasized in the guidelines on the distribution of entities, knowledge, and tasks between users and researchers. The analysis indicates that users and researchers are constructed differently; researchers are mainly constructed as responsible initiators and caretakers, while users are constructed as powerless and vulnerable. The guidelines portray the collaboration process as harmonious and assume a normative perspective. In doing so, challenges described in the literature related to power imbalances are not addressed. Based on these findings, we ask if these guidelines might function to maintain existing power imbalances between users and researchers.

In search of the changeable: An analysis of visual representations of nursing in Norwegian and Danish professional nursing journals, 1965-2016.

In this study, we demonstrate how perceptions of nursing are constructed in close connection with the development of the Nordic welfare states. Drawing on Gillian Rose's framework for analysing the social and political implications of visual materials, we analysed selected visual representations of nursing published in Danish and Norwegian professional nursing journals in the period 1965 to 2016. The analyses were conducted in an iterative process in three phases. First, we reviewed all visuals spanning the entire period to obtain an overview of developmental trends in the material. Second, selected visuals and associated captions were subjected to more thorough analysis. Third, we further examined and discussed the visuals in light of societal and political movements and ideologies in Danish and Norwegian healthcare policies over this period. Our analysis shows that visual representations of the nurse-patient relationship and of the patient's and the nurse's roles and responsibilities changed over this period and that the visualisations corresponded with and supported developments in the Danish and Norwegian welfare states as these first consolidated and then moved towards individualisation and the competition state. Our study demonstrates that nurses in these states are political actors implementing health policies embedded in various knowledge regimes.

Users' and researchers' construction of equity in research collaboration.

BACKGROUND: Equity is described as an ideal in user involvement in research and is mentioned in the health service literature and in several guidelines. However, equity is described as being difficult to obtain and the concept is rarely clarified or concretized. Equity can be socially constructed. OBJECTIVE: This study explored users' and researchers' constructions of equity in research processes. DESIGN AND METHOD: The study had a qualitative research design. Constructions of equity were analysed through the lens of positioning theory. Two focus group interviews consisting of both users and researchers were conducted. FINDINGS: The thirteen users and four researchers considered 'equity' as an important part of user involvement in research. Storylines about norms, responsibility, language, knowledge and usefulness evolved in the discussions. These storylines elucidated unequal access to rights and duties. DISCUSSION AND CONCLUSION: Users and researchers constructed equity in user involvement differently, but the difference was masked by an apparent agreement. Users and researchers drew on different storylines. The researchers emphasized the scientific discourse and although users acknowledged this discourse, they attempted to oppose this dominant discourse by drawing on a lay discourse. The identified constructions and negotiations of equity may contribute in new understandings of an equal collaboration in user involvement in research.

User involvement in the implementation of welfare technology in home care services: The experience of health professionals-A qualitative study.

AIMS AND OBJECTIVES: The aim of this study is to learn more about factors that promote or inhibit user involvement among health professionals when implementing welfare technology in home care services. BACKGROUND: It is a health policy goal to increase the use of welfare technology in order to address some of the challenges that healthcare services are facing. Health professionals' involvement is important for the successful implementation of welfare technology in home care services. DESIGN: The study has an explorative and descriptive longitudinal design based on a qualitative approach. Five focus group interviews were conducted with 16 nurses and assistant nurses from three different municipalities over a period of 2 years. The data were analysed using reflexive thematic analysis. The COREQ checklist was used. RESULTS: The analysis led to five main themes: competence a critical component, information and information lines, new ways of working, choice of welfare technology and change in patient services. From health professionals' perspective, there appeared to be a lack of preparedness for the change in the implementation of welfare technology entailed for home care services. The respondents experienced limited facilitation and opportunities for user involvement. CONCLUSION: Health professionals want to be more involved but emphasised that competence, information and collaborative arenas are necessary factors if involvement in the process is to be increased. Competence affected some of the respondents' attitudes and willingness to use the technology. The respondents also experienced that the managements' focus on facilitation and interest in user involvement in addition to infrastructures that functioned in various ways had an impact on user involvement. RELEVANCE TO CLINICAL PRACTICE: The knowledge gained from this study about factors that promote or inhibit user involvement among health professionals could contribute to better preparedness for further implementation of welfare technology in the field of home care.

Coming from two different worlds-A qualitative, exploratory study of the collaboration between patient representatives and researchers.

BACKGROUND: Interest in user involvement in research has increased and user involvement is increasingly seen as a prerequisite. Still, challenges in the collaboration process have been documented from both researchers' and users' perspective. OBJECTIVE: By bringing together researchers and patient representatives, this study explores and describes both parties' experiences with user involvement in research as they appear through interactions in a focus group. DESIGN: We apply a qualitative design using positioning theory as a theoretical framework. SETTING AND PARTICIPANTS: Researchers and patient representatives were mixed within 2 focus groups. Positioning theory was used to guide the analysis. FINDINGS: The discussion evolved around knowledge, equity and partnership, all related to power through constant negotiations of positions. Researchers and users ascribed various positions while discussing these topics. Various positions are seen as the result of different rights and duties in the research process. Power differences in the form of different rights and duties stand out as barriers. Being positioned as a partner was an important aspect for users in our study. Researchers assumed passive positions within the focus group, whereas users assumed active positions by expressing their wishes and needs. DISCUSSION AND CONCLUSION: Our study indicates that positions relating to status and knowledge in the involvement process are important. The findings suggest that the positions that users and researchers assume and ascribe throughout the process are constantly changing; however, the researchers tend to have more power. More studies are needed to understand how equity is perceived in user involvement in health research.

Moving between ideologies in self-management support-A qualitative study.

BACKGROUND: Reforms in current health policy explicitly endorse health promotion through group-based self-management support for people with long-term conditions. Health promotion and traditional medicine are based on different logics. Accordingly, health professionals in health-promoting settings demand the adoption of new practices and ways of thinking. OBJECTIVES: The objective of our study was to investigate how health professionals perceive the health-promoting group-based self-management support that is politically initiated for people with long-term conditions. DESIGN: This study had a qualitative research design that included focus group interviews and was guided by a social constructivist paradigm in which group-based self-management was viewed as a social construction. Different logics at play were analysed through the theoretical lens of institutional logic. Discussions among participants show frames of references seen as logics. SETTING AND PARTICIPANTS: We recruited health professionals from group-based health-promoting measures for people with type 2 diabetes in Norway. Two focus groups comprising four and six participants each were invited to discuss the practices and value of health promotion through group-based self-management support. RESULTS: The analysis resulted in three themes of discussion among participants that contained reflections of logics in movement. Health professionals' discussions moved between different logics based on the importance of expert-based knowledge on compliance and on individual lifestyle choices. DISCUSSION AND CONCLUSION: The study indicates that health promotion through self-management support is still a field "in the making" and that professionals strive to establish new logics and practices that are not considered difficult to manage or do not contain incompatible understandings.

Group affiliation in self-management: support or threat to identity?

BACKGROUND: Self-management is considered important in chronic illness, and contemporary health policy recommends participation in support groups for individuals with chronic conditions. Although withdrawal from or non-participation in support groups is an important problem, there is limited knowledge about individuals' own motivation for participation in or withdrawal from self-management support groups. OBJECTIVES: To investigate how individuals with type 2 diabetes perceive participation in group-based self-management support. DESIGN: This is a qualitative focus group study using a semi-structured interview guide. SETTING AND PARTICIPANTS: Sixteen participants diagnosed with type 2 diabetes were included in the study. Individuals with and without group affiliations were mixed in three focus groups to trigger discussions. In the analysis, reoccurring themes of engagement and discussions between participants were focused within a theoretical frame of institutional logic. The focus groups are seen as social spaces where participants construct identity. RESULTS: Both participation and non-participation in group-based self-management support are associated with dealing with the stigma of having type 2 diabetes. Negotiations contribute to constructing an illness dignity as a response to the logic of moral responsibility for the disease. DISCUSSION AND CONCLUSION: Contemporary policy contributes to societal understandings of individuals with type 2 diabetes as morally inadequate. Our study shows that group-based self-management support may counteract blame and contribute in negotiations of identity for individuals with type 2 diabetes. This mechanism makes participation in groups beneficial for some but stigma inducing for others.

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.

Institutional logic in self-management support: coexistence and diversity.

The prevalence of chronic conditions in Europe has been the subject of health-political reforms that have increasingly targeted collaboration between public, private and voluntary organisations for the purpose of supporting self-management of long-term diseases. The international literature describes collaboration across sectors as challenging, which implies that their respective logics are conflicting or incompatible. In line with the European context, recent Norwegian health policy advocates inter-sectorial partnerships. The aim of this policy is to create networks supporting better self-management for people with chronic conditions. The purpose of our qualitative study was to map different understandings of self-management support in private for-profit, volunteer and public organisations. These organisations are seen as potential self-management support networks for individuals with chronic conditions in Norway. From December 2012 to April 2013, we conducted 50 semi-structured interviews with representatives from relevant health and well-being organisations in different parts of Norway. According to the theoretical framework of institutional logic, representatives' statements are embedded with organisational understandings. In the analysis, we systematically assessed the representatives' different understandings of self-management support. The institutional logic we identified revealed traits of organisational historical backgrounds, and transitions in understanding. We found that the merging of individualism and fellowship in contemporary health policy generates different types of logic in different organisational contexts. The private for-profit organisations were concerned with the logic of a healthy appearance and mindset, whereas the private non-profit organisations emphasised fellowship and moral responsibility. Finally, the public, illness-oriented organisations tended to highlight individual conditions for illness management. Different types of logic may attract different users, and simultaneously, a diversity of logic types may challenge collaboration at the user's expense. Moral implications embed institutional logic implying a change towards individual responsibility for disease. Policy makers ought to consider complexities of logic in order to tailor the different needs of users.

Social support and self-management capabilities in diabetes patients: An international observational study.

OBJECTIVE: The objective of this study was to explore which aspects of social networks are related to self-management capabilities and if these networks have the potential to reduce the adverse health effects of deprivation. METHODS: In a cross-sectional study we recruited type 2 diabetes patients in six European countries. Data on self-management capabilities was gathered through written questionnaires and data on social networks characteristics and social support through subsequent personal/telephone interviews. We used regression modelling to assess the effect of social support and education on self-management capabilities. RESULTS: In total 1692 respondents completed the questionnaire and the interview. Extensive informational networks, emotional networks, and attendance of community organisations were linked to better self-management capabilities. The association of self-management capabilities with informational support was especially strong in the low education group, whereas the association with emotional support was stronger in the high education group. CONCLUSION: Some of the social network characteristics showed a positive relation to self-management capabilities. The effect of informational support was strongest in low education populations and may therefore provide a possibility to reduce the adverse impact of low education on self-management capabilities. PRACTICE IMPLICATIONS: Self-management support interventions that take informational support in patients' networks into account may be most effective, especially in deprived populations.

Social Support and Health in Diabetes Patients: An Observational Study in Six European Countries in an Era of Austerity.

INTRODUCTION: Support from individual social networks, community organizations and neighborhoods is associated with better self-management and health outcomes. This international study examined the relative impact of different types of support on health and health-related behaviors in patients with type 2 diabetes. METHODS: Observational study (using interviews and questionnaires) in a sample of 1,692 type 2 diabetes patients with 5,433 connections from Bulgaria, Greece, Netherlands, Norway, Spain, and the United Kingdom. Outcomes were patient-reported health status (SF-12), physical exercise (RAPA), diet and smoking (SDCSCA). Random coefficient regression models were used to examine linkages with individual networks, community organizations, and neighborhood type (deprived rural, deprived urban, or affluent urban). RESULTS: Patients had a median of 3 support connections and 34.6% participated in community organizations. Controlled for patients' age, sex, education, income and comorbidities, large emotional support networks were associated with decrease of non-smoking (OR = 0.87). Large practical support networks were associated with worse physical and mental health (B = -0.46 and -0.27 respectively) and less physical activity (OR = 0.90). Participation in community organizations was associated with better physical and mental health (B = 1.39 and 1.22, respectively) and, in patients with low income, with more physical activity (OR = 1.53). DISCUSSION: Participation in community organizations was most consistently related to better health status. Many diabetes patients have individual support networks, but this study did not provide evidence to increase their size as a public health strategy. The consistent association between participation in community organizations and health status provides a clear target for interventions and policies.

A discursive look at large bodies--implications for discursive approaches in nursing and health research.

This article illuminates discursive constructions of large bodies in contemporary society and discusses what discursive approaches might add to health care. Today, the World Health Organization describes a current "epidemic of obesity" and classifies large bodies as a medical condition. Texts on the obesity epidemic often draw upon alarming perspectives that involve associations of threat and catastrophe. The concern we see for body size in contemporary discourse is not new. Understandings of body size in Western societies are highly cultural and normative and could be different. The way we approach large bodies affects health care practice as well as subjects' self-perceptions.

Empowerment and bariatric surgery: negotiations of credibility and control.

Today obesity is understood as a chronic illness. Programs developed to deal with obesity often build on an explicit aim to "empower" patients to take increased responsibility for their health, in line with contemporary neoliberal discourses. There is little empirically based knowledge about this so-called empowering process. In this article we focus on how an empowering program for patients diagnosed as morbidly obese worked on individuals' identity. The program encompassed a course in lifestyle change, bariatric surgery, and aftercare. We conducted qualitative interviews with 9 individuals at different stages of their treatment process and applied discourse analysis to interpret their constructions and negotiations as they progressed through the program. We found that dimensions of control and credibility framed the respondents' identity work. Based on the findings we suggest that contemporary discourses of empowerment as practice might leave the participants "trapped" within the ambivalence of freedom and control.

Morbidly obese patients and lifestyle change: constructing ethical selves.

Morbidly obese patients and lifestyle change: constructing ethical selves In contemporary societies, bodily size is an important part of individuals' self-representation. As the number of persons clinically diagnosed as morbidly obese increases, programmes are developed to make people reduce weight by changing their lifestyle, and for some, by bariatric surgery. This article presents findings from interviews with 12 participants undergoing a prerequisite course prior to bariatric surgery that is intended both as a preparation for further (surgical) treatment and as a tool to empower individuals regarding lifestyle changes. In this study, we investigate how power operates by looking at how the participants position themselves throughout the course. Findings reveal how participants construct their ability to act in line with norms of lifestyle change. They do this by positioning themselves as both included group members and as 'morally' acceptable individuals. Despite some resistance, the participants tend to glide into the role of 'good patients' acting in compliance with the aims of the course in their hope and striving for new positions as 'normal-sized'. The intention in the course is to empower individuals towards lifestyle changes. The findings provide a basis to question whether these kinds of courses create new forms of compliance and dependency.

Empowering dialogues--the patients' perspective.

The aim of the study was to highlight the patients' experiences and perspectives of the dialogue with the health professionals at a pain clinic. This knowledge can develop and give nuanced understanding of patient empowerment and sense of control. Qualitative content analysis was used to reveal the meaning of the patients' experiences and perspectives during focus group interviews. The findings and interpretations revealed the main theme; preconditions and opportunities for participation. The main theme was represented by four subthemes; means for common understanding, basis for collaboration, acknowledgement and legitimacy. The findings and interpretations are discussed in the light of an evolving theory on women's sense of control while experiencing chronic pain and empowerment. The dialogue is very important related to aspects of control, remoralization and demoralization and is affected by external structural factors. This underlines the importance of further research focusing on empowerment and power.

Caught between conduct and free choice--a field study of an empowering programme in lifestyle change for obese patients.

The aim of this study was to investigate understandings and strategies of empowerment in Learning and Mastery Centres, in a course in lifestyle change for morbidly obese patients. A field study was conducted with nonparticipant observation, and data analysis was inspired by foucauldian discourse analysis. The analysis revealed powerful discourses underlying the course, and the analysis showed how different discourses were set at play within the teaching strategies in the course. The course leaders balanced powerful aspects that involved directing the participants towards strategies promoting their autonomy. The analysis revealed how strategies to reduce the impression of direction and conduct are powerful actions. From a foucauldian perspective of power, this analysis demonstrates how power is everywhere as a productive force. When creating programmes to empower patients to help them deal with their health, it seems vital that health professionals examine power. By accepting the presence of power, professionals can examine the truth motivation underlying an empowerment programme.