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1.
J Fish Dis ; : e14001, 2024 Jul 16.
Article in English | MEDLINE | ID: mdl-39011626

ABSTRACT

Studying inflammatory responses induced by vaccination can contribute to a more detailed understanding of underlying immune mechanisms in lumpfish (Cyclopterus lumpus). Tissue samples from lumpfish intraperitoneally immunized with a divalent oil-adjuvanted vaccine (Aeromonas salmonicida and Vibrio salmonicida) at water temperatures of 5, 10, and 15°C were collected at 630 day degrees and 18 weeks post injection. The relative amount of secretory and membrane-bound immunoglobulin M (IgM) gene transcripts in the head kidney was determined by qPCR. Vaccine-induced inflammatory lesions were assessed on histological sections of abdominal pancreatic/intestinal tissue from vaccinated fish in all three temperature groups. Inflammatory cells forming dense aggregations in lesions showed proliferative activity, many of which were identified as eosinophilic-granulocyte-like cells. IgM+ cells were scattered in inflammatory tissue dominated by connective tissue, showing no difference in numbers between lesions from fish vaccinated at 5, 10, and 15°C. Relative gene expression analysis of secretory and membrane-bound IgM revealed low overall expression in the head kidney of vaccinated fish at both 630 day-degrees and 18 weeks post injection. The results of this study indicate that the vaccine stimulated prolonged local inflammatory responses at the injection site, which were not influenced by temperature.

2.
J Interprof Care ; : 1-9, 2024 Jun 28.
Article in English | MEDLINE | ID: mdl-38940630

ABSTRACT

Collaboration among healthcare providers is regarded as a promising method to improve care quality and patient outcomes with limited human and financial resources. In Norway, "hospital-at-home" refers to care given by teams from the hospital pediatric wards who provide treatment and care in the family's home. When children need home visits multiple times daily, the hospital-at-home often reaches out to municipality healthcare providers, asking them to share this task. We aimed to explore the collaboration between stakeholders to gain knowledge on matters concerning the transfer of pediatric competence between hospital and home-based care, and to gain insight into how to set up the service for children in the future. We conducted three focus group interviews. The results showed that managing hospital-at-home collaboratively came with various challenges concerning unclear responsibilities between hospitals and homecare services and several obstacles to setting up cooperation across service levels. Thus, positive collaboration experiences between hospital and homecare settings were shared. Formalizing this collaboration was considered important for future collaboration. Building competence and learning from and with each other ensures better conditions for success if the collaboration is organized and facilitated through agreements between the hospital and the municipalities.

3.
Health Soc Care Community ; 30(6): e5326-e5335, 2022 11.
Article in English | MEDLINE | ID: mdl-35899974

ABSTRACT

Healthcare policies in Western countries increasingly emphasise the avoidance of hospitalisation to reduce hospital admissions. Hospital-at-home for children is a treatment offered to children at home that would otherwise require hospitalisation. Norway practices a model where homecare services play a significant role in assisting the hospital when children need home visits beyond the capacity of what the hospital can offer. Although homecare nurses' work has been affected by several changes in recent decades, few have reported on what these changes imply for homecare nurses' work and family caregivers. The aim of this study was to explore how parents and homecare nurses worked and collaborated in home visits to children receiving hospital-at-home, focusing on how they negotiated caregiving. We conducted 16 interviews: six interviews with parents and 10 interviews with homecare nurses. The interviews were analysed thematically. Both parents and homecare nurses described these home visits as challenging, indicating experiences of distrust. Parents had carefully observed homecare nurses, checking whether they knew how to treat the child and perform the clinical procedures. Homecare nurses had invested much energy into being perceived as calm and trustworthy by the parents. We applied the perspective of negotiation to understand the work and collaboration reported by parents and homecare nurses when unsafety or uncertainty was experienced during home visits, revealing the complexity of their roles in dealing with such events. The results showed the reciprocal dependency between the parents and the homecare nurses that enabled them to perform caregiving work in partnership, sharing responsibility. Our findings suggest that the collaboration with hospital-at-home has an impact on the feeling of safety and control for both parties. We question whether there is a danger of too much responsibility being left with the parents when homecare services are involved.


Subject(s)
Home Care Services , Nurses , Child , Humans , Negotiating , Parents , Hospitals
4.
BMC Geriatr ; 22(1): 223, 2022 03 18.
Article in English | MEDLINE | ID: mdl-35303816

ABSTRACT

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.


Subject(s)
Caregivers , Home Care Services , Aged , Family , Frail Elderly , Humans , Qualitative Research
5.
Health Care Women Int ; 43(1-3): 263-281, 2022.
Article in English | MEDLINE | ID: mdl-31922461

ABSTRACT

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.


Subject(s)
Pelvic Girdle Pain , Pregnancy Complications , Adaptation, Psychological , Child , Emotions , Female , Humans , Parturition , Pelvic Girdle Pain/diagnosis , Pregnancy , Pregnancy Complications/diagnosis
6.
J Clin Nurs ; 31(17-18): 2495-2506, 2022 Sep.
Article in English | MEDLINE | ID: mdl-34570945

ABSTRACT

AIM: To explore and describe the work performed by the nurses providing hospital-at-home care to children and their families from the perspectives of hospital nurses and physicians. BACKGROUND: To reduce capacity pressure on hospitals, various ambulatory services combining hospital and home treatment have emerged. Studies have shown that children and their families are satisfied with hospital-at-home when the parents experienced the professionals possessed the necessary competences. Knowledge is limited about nurses and physicians' perspectives on the work performed and competence needed when children receive hospital treatment in the family's home. DESIGN: A qualitative descriptive design with semi-structured interviews was used. Sixteen nurses and physicians from two hospitals in Norway working in hospital-at-home for children were recruited to interview. Data were analysed using systematic text condensation. In preparing the manuscript, we applied the COREQ guidelines. The theory on 'expert nursing' supported the discussion of results. RESULTS: We identified three categories through analysis; building a trustful relationship with the family and the sick child; performing essential skills in paediatric nursing care in hospital-at-home; and nurses serving as the 'hub' between the different parties. CONCLUSION: The results demonstrate the complexity of the work performed by hospital nurses when children received hospital-at-home. Building a trustful relationship and alliance with the child and the family formed the cornerstone of accomplishing good and safe paediatric care. The nurses became a coordinating and collaborating 'hub' for actors involved, taking care of patient safety on a daily basis. RELEVANCE TO CLINICAL PRACTICE: The way the nurses approached the children and their families, was the core element of the paediatric nursing expertise and important for the service quality and patient safety. The importance of building a trustful relationship needs to be more acknowledged, and the services would benefit to organise this through continuity of care.


Subject(s)
Home Care Services , Physicians , Child , Hospitals , Humans , Pediatric Nursing , Qualitative Research
7.
J Clin Nurs ; 30(19-20): 2854-2862, 2021 Oct.
Article in English | MEDLINE | ID: mdl-33934413

ABSTRACT

AIMS AND OBJECTIVES: This study aims to shed light on patients with late-stage COPD and their experiences of shame. BACKGROUND: Patients with COPD often experience shame for bringing the disease into their lives due to smoking. Knowledge about patients with COPD and their feelings of shame is crucial, but limited, however. DESIGN: The study has a qualitative and explorative design. We interviewed twelve patients with late-stage COPD. The data were analysed using Kvale and Brinkmann's three interpretative contexts. The COREQ checklist was used. RESULTS: Three main themes were defined; the body as a mirror of shame; a sense of being unworthy, invisible and powerless; and that sharing the burden is too difficult. The participants experienced that the disease defined their value as human beings and that made them feel vulnerable, ashamed and more socially isolated. CONCLUSIONS: The participants experienced feelings of shame, guilt and self-blame due to their own perceptions of themselves. They were in doubt about whether they were worthy to receive care and comfort from both health professionals and, their family and friends. The participants seemed to have internalised the moral norms of contemporary society and the understanding that the disease, and especially a 'self-inflicted' disease, is a personal weakness. RELEVANCE FOR CLINICAL PRACTICE: Findings from this study show that patients struggle with feelings such as shame and misery. The nurses who work bedside are in continuous contact with the patients and have an opportunity to gain knowledge of these feelings in order to meet the patients' needs for comfort and care. They have an obligation to ask patients about their feelings and meet them with empathy and respect. Moreover, it is necessary to have interdisciplinary fora in clinical practice where health professionals reflect, discuss and challenge themselves according to attitudes towards patients with so-called 'self-inflicted' diseases.


Subject(s)
Pulmonary Disease, Chronic Obstructive , Shame , Emotions , Guilt , Humans , Qualitative Research
8.
BMC Health Serv Res ; 21(1): 245, 2021 Mar 19.
Article in English | MEDLINE | ID: mdl-33740974

ABSTRACT

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.


Subject(s)
Home Care Services , Medication Systems , Mental Health Services , Aged , Humans , Qualitative Research , Technology
9.
Nurs Inq ; 28(1): e12378, 2021 01.
Article in English | MEDLINE | ID: mdl-32905645

ABSTRACT

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.


Subject(s)
Community Participation/methods , Governing Board/trends , Guidelines as Topic/standards , Governing Board/standards , Humans , Work Engagement
10.
Patient Educ Couns ; 103(7): 1263-1271, 2020 07.
Article in English | MEDLINE | ID: mdl-32164960

ABSTRACT

OBJECTIVE: The objective of this study is to shed light on common characteristics revealed in concept analyses of empowerment to contribute to further understanding. A further objective is to discuss how the perspective of healthcare service users appeared in the concept analyses. METHODS: The review was performed by systematically searching Medline, CINAHL, EMBASE, PsycINFO and ERIC. The search yielded 255 abstracts, which were reduced by relevance and critical appraisal to the 12 concept analyses included. The analysis process involved thematic synthesis as described by Thomas and Harden. RESULTS: The synthesis led to 13 descriptive themes structured according to antecedents, attributes and consequences of empowerment. The synthesis revealed how sparsely the question of equality and power in the relation between health professionals and healthcare service users is addressed. DISCUSSION: To a great extent empowerment is viewed as a helping process of making patients act differently, rather than redistribution of power. For groups that are particularly vulnerable to oppression, questions of power are of severe importance. PRACTICE IMPLICATIONS: As user participation is a growing discourse in health policy, health professionals need education to develop and address dimensions of power and reciprocity in empowering relations between users and themselves.


Subject(s)
Health Personnel , Professional-Patient Relations , Health Services , Humans , Patient Participation
11.
Nurs Inq ; 27(3): e12340, 2020 07.
Article in English | MEDLINE | ID: mdl-31899850

ABSTRACT

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.


Subject(s)
Audiovisual Aids/trends , Nursing/instrumentation , Periodicals as Topic/trends , Social Identification , Denmark , Humans , Norway , Nurse's Role , Nursing/trends
12.
Health Expect ; 23(2): 296-305, 2020 04.
Article in English | MEDLINE | ID: mdl-31960555

ABSTRACT

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.


Subject(s)
Negotiating , Research Personnel , Focus Groups , Humans , Qualitative Research
13.
J Clin Nurs ; 29(21-22): 4007-4019, 2020 Nov.
Article in English | MEDLINE | ID: mdl-33463827

ABSTRACT

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.


Subject(s)
Health Personnel , Home Care Services , Focus Groups , Humans , Qualitative Research , Technology
14.
Health Expect ; 22(3): 496-503, 2019 06.
Article in English | MEDLINE | ID: mdl-30779324

ABSTRACT

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.


Subject(s)
Cooperative Behavior , Patient Advocacy , Research Personnel , Adult , Female , Focus Groups , Humans , Male , Norway , Power, Psychological , Qualitative Research , Research Subjects
15.
Health Expect ; 22(1): 83-92, 2019 02.
Article in English | MEDLINE | ID: mdl-30289189

ABSTRACT

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.


Subject(s)
Health Promotion , Qualitative Research , Self-Management , Diabetes Mellitus, Type 2/therapy , Health Education , Health Policy , Humans , Self Care , Self-Help Groups
17.
Health Expect ; 20(1): 159-170, 2017 02.
Article in English | MEDLINE | ID: mdl-26868829

ABSTRACT

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.


Subject(s)
Self-Help Groups , Self-Management , Social Identification , Aged , Diabetes Mellitus, Type 2/therapy , Female , Focus Groups , Humans , Interviews as Topic , Male , Middle Aged , Qualitative Research
18.
Qual Health Res ; 27(3): 299-310, 2017 Feb.
Article in English | MEDLINE | ID: mdl-26515920

ABSTRACT

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.


Subject(s)
Diabetes Mellitus, Type 2/psychology , Diabetes Mellitus, Type 2/therapy , Diet/psychology , Negotiating/psychology , Self Care/psychology , Social Support , Adult , Aged , Chronic Disease , Environment , Europe , Feeding Behavior/psychology , Female , Humans , Life Style , Male , Middle Aged , Qualitative Research , Socioeconomic Factors
19.
Health Expect ; 20(3): 434-447, 2017 06.
Article in English | MEDLINE | ID: mdl-27231025

ABSTRACT

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.


Subject(s)
Chronic Disease , Leadership , Self Care/methods , Social Support , Health Personnel/organization & administration , Health Policy , Humans , Patient-Centered Care
20.
Health Soc Care Community ; 24(6): 672-686, 2016 11.
Article in English | MEDLINE | ID: mdl-26429546

ABSTRACT

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.


Subject(s)
Diabetes Mellitus, Type 2/therapy , Self Care , Humans , Poverty , Self-Management , Social Support
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