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  • 1.
    Carlsund, Åsa
    et al.
    Mittuniversitetet ; Swedish Family Care Competence Centre (NKA), Kalmar.
    Johansson, Pauline
    Linnéuniversitetet; Swedish Family Care Competence Centre (NKA), Kalmar.
    Hammare, Ulf
    Ersta Sköndal Bräcke University College, Comissioned Education. Swedish Family Care Competence Centre (NKA), Kalmar.
    Hanson, Elizabeth
    Linnéuniversitetet; Swedish Family Care Competence Centre (NKA), Kalmar.
    Support for children as next of kin and systematic follow up: Group leaders’ and managers’ perspectives within non-profit organizations in Sweden2017In: Open Family Studies Journal, ISSN 1874-9224, Vol. 9, p. 49-59Article in journal (Refereed)
    Abstract [en]

    Method: The aim of this study was to explore the systematic follow up of supportive activities in non-profit organizations targeted at childrenas next of kin. Managers and group leaders were interviewed, and findings were content analysed.

    Result: The findings indicated that a child focus, education, safety and trust were important. These factors were observed as the primarytasks and the key reason for being involved in supportive activities. Managers expressed concern about not retaining funding, if the organization was unable to demonstrate the effects of their activities. Namely, to enhance the health and wellbeing of children. In order to continuously develop their work most organisations explained that they used some form of system for follow up. However,there was a wide variation in how non-profit organizations worked with follow ups.

    Conclusion: Overall, it was evident that there was a major need for education and support in this area.

  • 2.
    Finkel, Deborah
    et al.
    Jönköping University; Indiana University Southeast, USA.
    Bülow, Pia H.
    Jönköping University; University of the Free State, South Africa.
    Wilińska, Monika
    Jönköping University.
    Jegermalm, Magnus
    Ersta Sköndal Bräcke University College, Centre for Civil Society Research. Jönköping University.
    Torgé, Cristina Joy
    Jönköping University.
    Bravell, Marie Ernsth
    Jönköping University.
    Bülow, Per
    Jönköping University; Rättspsykiatriska regionkliniken, Vadstena; Psykiatriska kliniken på Länssjukhuset Ryhov.
    Does the length of institutionalization matter? Longitudinal follow-up of persons with severe mental illness 65 year and older: shorter-stay versus longer-stay2021In: International Journal of Geriatric Psychiatry, ISSN 0885-6230, E-ISSN 1099-1166, Vol. 36, no 8, p. 1223-1230Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: As part of the process of de-institutionalization in the Swedish mental healthcare system, a reform was implemented in 1995, moving the responsibility for services and social support for people with severe mental illness (SMI) from the regional level to the municipalities. In many ways, older people with SMI were neglected in this changing landscape of psychiatric care. The aim of this study is to investigate functional levels, living conditions, need of support in daily life, and how these aspects changed over time for older people with SMI.

    METHODS: In this study we used data from surveys collected in 1996, 2001, 2006, and 2011 and data from national registers. A group of older adults with severe persistent mental illness (SMI-O:P) was identified and divided into those who experienced shorter stays (less than 3 years) in a mental hospital (N = 118) and longer stays (N = 117).

    RESULTS: After correcting for longitudinal changes with age, the longer-stay group was more likely than the shorter-stay group to experience functional difficulties and as a result, were more likely to have experienced "re-institutionalization" to another care setting, as opposed to living independently.

    CONCLUSIONS: The length of mental illness hospitalization has significant effects on the living conditions of older people with SMI and their ability to participate in social life. This article is protected by copyright. All rights reserved.

  • 3.
    Fläckman, Birgitta
    Karolinska institutet.
    Work in eldercare - staying or leaving: Caregivers' experiences of work and support during organizational changes2008Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The overall aim of the present thesis was to reveal nursing home (NH) caregivers’ work ex-periences when receiving support through education and clinical supervision over a two-year period, while the workplace was undergoing organizational changes. The studies (I-IV) com-bine qualitative and quantitative methods in a longitudinal two-year follow-up project in three Swedish NHs (NH I - III), in which support was given to the staff at NH I-II. NH III was in-cluded as a comparison. The thesis is based on interviews (I-IV) and self-assessment ques-tionnaires (I), which were conducted at three occasions: at start, after 12 and 24 months at the respective NHs. As a result of political decisions, NH I was informed of organizational changes and pending financial cutbacks shortly after opening. The other NHs were informed at around 12 months. The numbers of caregivers willing to participate at start were 32, 21 and 22 at the respective NHs. No new participants were included to replace dropouts. Descriptive statistics (I) and qualitative content analyses (I-IV) were used. Study I focused on the organ-izational climate and the prevalence of burnout symptoms in the three NHs. The result from NH I revealed an improvement over time as opposed to NH II, which showed negative pro-gression at 12 months, despite support. This corresponded to the time at which they received information about financial cutbacks. The improvement based on the interviews at NH I was not as distinct as that based on the self-assessment scores. The support given seemed to have helped the caregivers at NH I, but was not able to alter the situation at NH II. The develop-ment based on self-assessments at NH III was more constant throughout the study. Results from interviews at NH II and III were more in accordance with the scores. In Study II, the caregivers’ work experiences at NH II, while receiving support through education and clinical supervision, showed that they valued the caring milieu and their own knowledge. The value of knowledge was related to their different backgrounds and to the knowledge gained through the support, and it seemed to be one factor underlying participants’ continued willingness to stay. In Study III, caregivers’ experiences and reflections on working at NH III, while under threat of organizational changes and termination notice, showed a transition from ‘having a professional identity and self-confidence’ to ‘being a professional in a threatening situation caused by someone else’. Finally they were ‘struggling to adapt to a changed working envi-ronment as a person and a professional’. The caregivers experienced a loss of pride and satis-faction. Included in Study II and III were interviews from those caregivers who had been interviewed on all three occasions. Study IV focused on what had caused caregivers at the three NHs to decide to leave their employment during the study period. Caregivers’ decisions to leave work could be encompassed in one main category: ‘Unmet expectations’. Their ex-periences were lack of encouragement, trust and professional development. Also reported were feelings of insecurity, different opinions on the care delivered, being disregarded and betrayed, followed by thoughts of leaving work and pursing other opportunities. It can be concluded that the changes at all three NHs seemed to have over-shadowed attempts to im-prove working conditions. Successful changes require a vision that justifies them. High-level decision-makers and managers ought to be conscious of the factors that facilitate or impede similar transitions. They should also focus on supporting caregivers during change processes, as the literature shows a risk for decreasing quality of care.

  • 4.
    Fläckman, Birgitta
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences.
    Skovdahl, Kirsti
    Faculty for Health Sciences, Buskerud and Vestfold University College, Drammen, Norway.
    Fagerberg, Ingegerd
    Ersta Sköndal University College, Department of Health Care Sciences. Department of Neurobiology, Care Sciences and Society, Karolinska institutet.
    Kihlgren, Mona
    Centre for Caring Sciences, Örebro University Hospital.
    Kihlgren, Annica
    School of Health and Medical Sciences, Örebro University.
    Consequences of working in elder care during changes and cutbacks in the organisation while education and clinical supervision was provided: A mixed methods study2015In: Open Journal of Nursing, ISSN 2162-5336, E-ISSN 2162-5344, Vol. 5, no 9, p. 813-827Article in journal (Refereed)
    Abstract [en]

    Background: Reorganization and downsizing can disrupt a competent staff and conflicts can arise between what the employee is being asked to do and their knowledge and competences. Reduced job satisfaction among nursing home staff with increased workload and strain can occur. Aim and Objectives: The aim was to investigate the organizational climate and prevalence of burnout symptoms among caregivers over time in three Swedish nursing homes (NH I-III) undergoing organizational changes, while education and clinical supervision were provided. Design: The study design combines qualitative and quantitative methods in a longitudinal two-year follow-up project in NH I-III. Methods: Support through education and clinical supervision was provided for caregivers only at NH I and NH II. At NH I-III caregiver self-assessments and interviews were completed and analysed three different times. Results: NH I revealed improvement and increased innovation over time, while NH II showed a decline with no ability to implement new knowledge. NH III retained a more status quo. Conclusions: Organizational changes and cutbacks, occurring at different times, appeared to cause major stress and frustration among the three personnel groups. They felt guilty about not meeting their perceived obligations, seemed to have lost pride in their work but kept struggling. The changes seemed to over-shadow attempts to improve working conditions through education and clinical supervision initially. Implications for practice: It will be important to learn from reorganizations and the consequences they will have for the staff and quality of care. Important topics for future research are to study financial cutbacks and changes in organizational processes in care of older people to be able to develop a more person centered care for older people.

  • 5.
    Fläckman, Birgitta
    et al.
    Högskolan i Gävle.
    Sørlie, Venke
    Kihlgren, Mona
    Unmet expectations: why nursing home staff leave care work2008In: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 3, no 1, p. 55-62Article in journal (Refereed)
    Abstract [en]

    Background. The shortages of healthcare professionals have been a common topic in care of older people.

    Aim and objectives. The aim of the present study was to illuminate what caused the nursing home caregivers to decide to leave their employment.

    Design. A two-year intervention study was performed in three nursing homes in Sweden.

    Method. This qualitative interview study was conducted with 18 caregivers who decided to leave their employment during the first year. Content analysis was the method used to analyse the interviews.

    Result. The caregivers’ decisions to leave their work in care of older people could be encompassed in one main category: ‘Unmet Expectations’. Their experiences were of lack of encouragement and trust and professional development. Feelings of insecurity, different opinions on the care delivered, being disregarded and betrayed followed as did thoughts of leaving work and pursuing other opportunities.

    Conclusions. The main findings indicated that organizational work pressure with information about pending financial cutbacks caused the caregivers to leave the nursing homes.

    Relevance to clinical practice. The study’s results show the value of meeting the needs of caregivers, as caregivers consider that they meet the needs of the older people. Optimal use of caregivers’ skills, experiences, competence and respect for their aspirations is also likely to result in cost-efficient care.

  • 6.
    Gaber, Sophie
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences. Karolinska institutet.
    Thalen, Liv
    Karolinska institutet.
    Malinowsky, Camilla W.
    Karolinska institutet.
    Margot-Cattin, Isabel
    Karolinska Institutet; University of Applied Sciences and Arts Western Switzerland, Switzerland.
    Seetharaman, Kishore
    Simon Fraser University, Canada.
    Chaudhury, Habib
    Simon Fraser University, Canada.
    Cutchin, Malcolm
    Pacific Northwest University of Health Sciences, USA.
    Wallcook, Sarah
    Karolinska Institutet.
    Kottorp, Anders
    Karolinska institutet; Malmö universitet.
    Brorsson, Anna
    Karolinska Institutet.
    Biglieri, Samantha
    Ryerson University, Canada.
    Nygard, Louise
    Karolinska Institutet.
    Social Citizenship Through Out-of-Home Participation Among Older Adults With and Without Dementia2022In: Journal of Applied Gerontology, ISSN 0733-4648, E-ISSN 1552-4523, Vol. 41, no 11, p. 2362-2373Article in journal (Refereed)
    Abstract [en]

    There is limited empirical knowledge about how older adults living with dementia enact their social citizenship through out-of-home participation. This study aimed: (a) to investigate out-of-home participation among older adults with and without dementia in four countries and (b) to compare aspects of stability or change in out-of-home participation. Using a cross-sectional design, older adults with mild-to-moderate dementia and without dementia, aged 55 years and over, were interviewed using the Participation in ACTivities and Places OUTside the Home questionnaire in Canada (n = 58), Sweden (n = 69), Switzerland (n = 70), and the United Kingdom (n = 128). Data were analyzed using descriptive statistics and a two-way analysis of variance. After adjustment for age, diagnosis of dementia and country of residence had significant effects on total out-of-home participation (p < .01). The results contribute to policies and development of programs to facilitate social citizenship by targeting specific activities and places.

  • 7.
    Klarare, Anna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Lind, Susanne
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Hansson, Johan
    Folkhälsomyndigheten.
    Fossum, Bjöörn
    Sophiahemmet högskola; Karolinska institutet.
    Fürst, Carl Johan
    Lunds universitet.
    Lundh Hagelin, Carina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Leadership in specialist palliative home care teams: A qualitative study2020In: Journal of Nursing Management, ISSN 0966-0429, E-ISSN 1365-2834, Vol. 28, no 1, p. 102-111Article in journal (Refereed)
    Abstract [en]

    AIM: The aim of this study was to describe team leaders' experiences of facilitators and barriers of leadership in specialist palliative home care teams.

    BACKGROUND: For effective teamwork in specialist palliative care, leadership is crucial; however, defining and agreeing on what leadership comprises may be challenging. In palliative care, teamwork is recognized as imperative for multiprofessional perspectives to meet dying patients' and families' needs.

    METHODS: Qualitative interviews with 13 team leaders in specialist palliative home care were performed, using the Pettigrew and Whipp framework, and analysed with directed content analysis.

    RESULTS: Team leaders' experiences of conditions influencing the organisation and delivery of specialist palliative home care is multifaceted and leaders seem conflicted in their approach to the multiple levels of leadership, vision and responsibilities.

    CONCLUSION: Team leaders in specialist palliative home care described goals of care on differing levels and, for some, fiscal restraints and external pressures influenced their vision and leadership. Team leaders experienced challenges of leadership in relation to organisational issues, feeling burdened by responsibilities, budget restraints and team size.

    IMPLICATIONS FOR NURSING MANAGEMENT: Team leadership is demanding and complex. In specialist palliative home care, affirming values and enabling vision during times of fiscal strain and external pressures, is challenging. For successful leadership that develops both individuals and the health care team, leaders are recommended to adapt the leadership style to the present situation surrounding the team.

  • 8.
    Kneck, Åsa
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Flink, Maria
    Karolinska institutet.
    Frykholm, Oscar
    Karolinska institutet.
    Kirsebom, Marie
    Linnéuniversitetet.
    Ekstedt, Mirjam
    Karolinska institutet; Linnéuniversitetet.
    The Information Flow in a Healthcare Organisation with Integrated Units.2019In: International journal of integrated care, ISSN 1568-4156, Vol. 19, no 3, p. 1-10, article id 20Article in journal (Refereed)
    Abstract [en]

    Introduction: Integrated care is believed to provide support to patients with multiple long-term and complex conditions. Transparency in information delivery is key for shared decision-making, and co-production of care. This study aimed to explore information pathways within an integrated healthcare and social care organisation and describe how information continuity was delivered for an older patient with complex care needs.

    Methods: An explorative single-case study conducted in a Swedish healthcare organization where municipality and the county council have integrated their services. One focus group discussion and six individual interviews were conducted.

    Results: Information flow to partners in care was obstructed, with compensatory double documentation, complementary information channels, and information loss. A heavy burden was on the patient and relatives to keep track of and communicate information between different caregivers. Patients were expected to be active partners in their own care, but were largely excluded from the information flow.

    Discussion: Even integration of care organisations does not imply that integrated care is delivered at the sharp end of practice. An integrated electronic health record is needed to improve accessibility of care information from within all the organisations, facilitating handovers between professionals and levels of care, and involving patients in the information flow.

  • 9.
    Lagerin, Annica
    et al.
    Karolinska institutet; Stockholm läns landsting.
    Törnkvist, Lena
    Karolinska institutet; Stockholm läns landsting.
    Nilsson, Gunnar
    Karolinska institutet; Stockholm läns landsting.
    Johnell, Kristina
    Karolinska institutet; Stockholm läns landsting.
    Fastbom, Johan
    Karolinska institutet; Stockholm läns landsting.
    Extent and quality of drug use in community-dwelling people aged ≥75 years: A Swedish nationwide register-based study2020In: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 48, no 3, p. 308-315, article id 1403494817744101Article in journal (Refereed)
    Abstract [en]

    AIMS: It is important for district nurses and other health professionals in primary care to gain more insight into the patterns and quality of drug use in community-dwelling older people, particularly in 75-year-olds, who have been the target of preventive home visits. This study aimed to examine the extent and quality of drug use in community-dwelling older people and to compare drug use in 75-year-olds with that of older age groups.

    METHODS: Data from 2013 on people aged ≥75 years were obtained from the Swedish Prescribed Drug Register. Those living in the community (671,940/739,734 people aged ≥75 years) were included in the study. Quality of drug use was assessed by using a selection of indicators issued by the Swedish National Board of Health and Welfare.

    RESULTS: The prevalence of polypharmacy and of many drug groups increased with age, as did several indicators of inappropriate drug use. However some drug groups, as well as inappropriate drugs, were prevalent in 75-year-olds and declined with age, for example diabetes drugs, drugs with major anticholinergic effects and nonsteroidal anti-inflammatory drugs.

    CONCLUSIONS: The substantial use of some drugs as early as 75 years of age confirms the value of including drug use as a topic in preventive home visits to 75-year-olds. The finding that polypharmacy and many measures of inappropriate drug use increased with age in community-dwelling older people also underscores the importance of district nurses' role in continuing to promote safe medication management at higher ages.

  • 10.
    Lind, Susanne
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Wallin, L
    Karolinska institutet; Högskolan Dalarna; Göteborgs universitet.
    Brytting, Tomas
    Ersta Sköndal Bräcke University College, The Institute for Organisational and Worklife Ethics.
    Fürst, C J
    Lunds univeristet; Region Skåne.
    Sandberg, J
    Jönköpings universitet.
    Implementation of national palliative care guidelines in Swedish acute care hospitals: A qualitative content analysis of stakeholders' perceptions.2017In: Health Policy, ISSN 0168-8510, E-ISSN 1872-6054, Vol. 121, no 11, p. 1194-1201, article id S0168-8510(17)30239-7Article in journal (Refereed)
    Abstract [en]

    In high-income countries a large proportion of all deaths occur in hospitals. A common way to translate knowledge into clinical practice is developing guidelines for different levels of health care organisations. During 2012, national clinical guidelines for palliative care were published in Sweden. Later, guidance for palliative care was issued by the National Board of Health and Welfare. The aim of this study was two-fold: to investigate perceptions regarding these guidelines and identify obstacles and opportunities for implementation of them in acute care hospitals. Interviews were conducted with local politicians, chief medical officers and health professionals at acute care hospitals. The Consolidated Framework for Implementation Research was used in a directed content analysis approach. The results showed little knowledge of the two documents at all levels of the health care organisation. Palliative care was primarily described as end of life care and only few of the participants talked about the opportunity to integrate palliative care early in a disease trajectory. The environment and culture at hospitals, characterised by quick decisions and actions, were perceived as obstacles to implementation. Health professionals' expressed need for palliative care training is an opportunity for implementation of clinical guidelines. There is a need for further implementation of palliative care in hospitals. One option for further research is to evaluate implementation strategies tailored to acute care.

  • 11.
    Lundvall, Johanna
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences.
    Björnsdotter Kristiansson, Martina
    Ersta Sköndal University College, Department of Health Care Sciences.
    Nurses attitudes towards euthanasia2011Independent thesis Basic level (degree of Bachelor), 10 credits / 15 HE creditsStudent thesis
    Abstract [sv]

    Bakgrund: Eutanasi är idag förbjudet i de flesta länder, däribland Sverige. Frågan diskuteras ofta och är ett kontroversiellt ämne. Dessa diskussioner förs dock alltjämnt utifrån läkarens perspektiv och sjuksköterskans delaktighet hamnar i skymundan.

    Syfte: Syftet med föreliggande studie är att belysa sjuksköterskors uppfattning om eutanasi i länder där det tillämpas respektive där det inte tillämpas.

    Metod: Denna metod är en systematisk litteraturstudie som omfattar 12 artiklar från åren 2000-2011. Analysen har skett med via kodning och kategorisering av artiklarnas text. Katie Erikssons vårdteori har utgjort den teoretiska utgångspunkten för diskussion av resultatet.

    Resultat: Sjuksköterskor känner en ovisshet i vad eutanasi verkligen innebär. Det vanligaste argumentet mot eutanasi i länder där det är olagligt är att sjuksköterskorna tror att det kan komma att missbrukas samt bli ett alternativ för patienter som känner att de är till belastning för samhället. Oavsett om sjuksköterskorna arbetar i länder där eutanasi är lagligt eller olagligt är de som har en religiös trosuppfattning mer säkra i var de står i eutanasifrågan. De sjuksköterskor som arbetar inom hemsjukvård tenderar att vara mer positivt inställda till eutanasi än sjuksköterskor som arbetar på sjukhus, oberoende av vilket land de arbetar i.

    Slutsats och diskussion: Oavsett om sjuksköterskorna jobbade i ett land där eutanasi var lagligt eller olagligt var det inte mycket som skiljde sig i deras uppfattning rörande ämnet.  Mer information om vad eutanasi innebär skulle kunna bidra till att sjuksköterskor blir bättre rustade och kan förmedla adekvat information till patienten och dess anhöriga, samt känna sig trygga i sin sjuksköterskeroll.

    Download full text (pdf)
    FULLTEXT02
  • 12.
    Mankell, Anna
    Ersta Sköndal Bräcke University College, Centre for Civil Society Research.
    Collective Patient Participation: Patient Voice and Civil Society Organizations in Healthcare2021Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The importance of engaging patients in the development of healthcare services and policy has received increasing attention over the last decades. However, this attention has mainly been directed towards various forms of involvement of individual patients. This dissertation shifts focus to the collective forms of patient participation and the specific values they bring. The overall aim of the dissertationis to explore how collective patient participation is shaped, in an increasingly individualized and marketized society. The articles included in the dissertation analyze aspects such as advocacy work, representation mechanisms and coproduction practices at different levels of healthcare. These aspects are studied from the perspective of civil society organizations navigating current social trends such as individualization and marketization. Taken together, the findings point to the importance of considering the preconditions of the individual patient to engage in patient participation in a collective form. This appears to be an important factor in the shaping of collective patient participation, as well as a potential challenge for both advocacy and representation. The findings also indicate that individual and collective forms of participation should not be seen as two conflicting interests, but could rather be mutually strengthening, something that should be considered both by civil society organizations and healthcare policymakers. Furthermore, this dissertation contributes to a better understanding of the diverse nature of patient participation, and how these variations all play important yet distinct roles in improving democratic and quality aspects of healthcare.

    Download full text (pdf)
    Doktorsavhandling
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    presentationsbild
  • 13.
    Mankell, Anna
    Ersta Sköndal Bräcke University College, Department of Social Sciences.
    Individual, Community and Organizational Coproduction and their Relevance to Service Quality – the Case of Japanese Health CooperativesIn: Article in journal (Refereed)
    Abstract [en]

    The concept of coproduction has increasingly been adopted by health services research, practice and policy. The focus of this type of coproduction is at the individual level. However, a large literature has for decades explored the values and logics that come with coproduction at a collective level. This article combines the different theories of coproduction by studying Japanese healthcare cooperative organizations, where the individual-level, healthcare-related type of coproduction exists along with more collective forms such as community- and organizational coproduction. The study aims to establish this three-part typology of coproduction, and how the different types of coproduction relate to self estimated service quality. The study uses survey data from 2016–2017 collected at four cooperative hospitals in Japan, covering both staff and patients. Individual coproduction stands out with the strongest positive correlation with service quality. However, all three types of coproduction had strong and positive correlations with service quality. An important finding is that the relationship between service quality and the collective forms of coproduction were experienced differently by patients and staff. This finding underlines the importance of using a multi-stakeholder perspective when studying collective forms of coproduction in healthcare.

  • 14.
    Mankell, Anna
    et al.
    Ersta Sköndal Bräcke University College, Department of Social Sciences.
    Fredriksson, Mio
    Uppsala universitet.
    Federative patient organizations in a decentralized health-care system: A challenge for representation?2020In: Health, ISSN 1363-4593, E-ISSN 1461-7196, Vol. 25, no 6, p. 722-738Article in journal (Refereed)
    Abstract [en]

    Over the last two decades, the inclusion of patient voices and public values in the field of health care through deliberation has become increasingly emphasized, by patients as well as policy-makers. This is achieved not only through individual patient participation but also through patient interest organizations. Geographical representation within national interest organizations is especially important in a decentralized, multilevel policy field such as Swedish health care, allowing representation from all regions to be present in national advocacy. Using Pitkin’s conceptualization of political representation,this study aims to characterize the shaping of representation among Swedish federative patient organizations, in a time of professionalization and centralization of civil society.The results show that patient organization representation has functioning mechanisms for all studied aspects of representation; however, the nature of the substantive representation seems to contain a challenge from a democratic perspective. This leads us to a discussion about management, rooted in democratic ideals but simultaneously strongly characterized by more managerial ideals, and the contradiction of democracy and actionable management.

  • 15.
    Mankell, Anna
    et al.
    Ersta Sköndal Bräcke University College, Centre for Civil Society Research.
    Fredriksson, Mio
    Uppsala universitet.
    Two-front individualization: The challenges of local patient organizations2020In: Journal of Civil Society, ISSN 1744-8689, E-ISSN 1744-8697, Vol. 16, no 1, p. 77-95Article in journal (Refereed)
    Abstract [en]

    Patient organizations such as those in Sweden face individualization processes on two fronts, both in their own voluntary sector and in the healthcare sector. The aim of this study is to investigate how the patient organizations are handling the two-front individualization process internally in their organizations, as well as externally towards a more patient-centred healthcare system.With more diverse stakeholders and individual patients given increased influence, we would expect a corresponding adjustment in the strategies of the patient organizations. The article’s focus is on the organizations’ representative role, and theories on advocacy strategies are used to identify the nature of the patient organizations’ advocacy work. To find out how adjustments are made, 17 semi-structured interviews were conducted with representatives from local branches of three large Swedish patient organizations. The interviews show a low tendency to adjust as a response to this two-front individualization and illustrate a paralyzed rather than modified behaviour in these organizations. Individualization being a global trend, we believe these results are of interest to scholars of collective participation in all parts of the world.

  • 16.
    O'Sullivan, Anna
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Undocumented migrants’ access to healthcare in Sweden, and the impact of Act 2013:4072023In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989Article in journal (Refereed)
    Abstract [en]

    Background Research shows that undocumented migrants have difficulties in accessing healthcare. Act 2013:407 came into force in 2013 and entitled undocumented migrants to healthcare that cannot be deferred. To date, studies about undocumented migrants’ access to care in Sweden and the impact of Act 2013:407 are sparse. Hence, the aim of this study was to describe professionals’ experiences of access to healthcare for undocumented migrants in Sweden and the impact of Act 2013:407.

    Methods A qualitative design with semi-structured interviews was employed. Nine interviews were carried out in 2015 with nurses at two NGO healthcare centres for undocumented migrants – and an additional seven interviews in 2022 with staff at an NGO healthcare centre for undocumented migrants and personnel at a regional health and medical care administration. Interpretive description was used for the analyses.

    Ethical considerations Permission to carry out the study was obtained from managers at the participating NGOs and the regional health and medical care administration. Participants received verbal and written information about the study, and informed consent was obtained from all participants.

    Findings Six categories emerged from the analysis: Changes since the Act was introduced, General problems with healthcare access, Care for undocumented migrants – politics and social economy, Lack of knowledge, ‘Healthcare that cannot be deferred’ and Being an undocumented migrant.

    Conclusion Undocumented migrants’ social needs are as great as their needs for healthcare. Healthcare staff are burdened with healthcare cost considerations which affect their judgement of care provision and prioritization. Healthcare staff attitudes towards undocumented migrants affect their access to healthcare. Undocumented migrants in need of healthcare are especially vulnerable due to their legal status, being ill and the fear of being reported and deported. To assure undocumented migrants’ access to healthcare and maintain healthcare ethics, the only possible solution is to provide healthcare based on needs.

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  • 17.
    Pusa, Susanna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Lind, Susanne
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Häggström, Marie
    Mittuniversitetet.
    Social processes in academic-community partnership in health care: A grounded theory study2021In: BMC Nursing, ISSN 1472-6955, E-ISSN 1472-6955, Vol. 20, article id 258Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: International and national guidelines state that palliative care should be offered to everyone who needs it. To promote the implementation of palliative care in nursing homes, a partnership collaboration was initiated with the goal of implementing high quality palliative care. The partnership consisted of three partner groups: a project group from a non-profit organisation providing health care, managers at the nursing homes and an academic partner. The aim was to explore the social processes within academic-community partnership in a collaboration project.

    METHODS: Digital focus group discussions were conducted with 16 participants, representing all three partner groups. One individual digital interview was also carried out. A constructivist perspective of a grounded theory approach was used for data analysis.

    RESULTS: The core category, partnership positioning, covers the social processes of the academic-community partnership in a collaboration project to implement and evaluate health-promoting interventions in clinical health care. The core category was found to have four categories: Pre-positioning, Co-positioning, Re-positioning and GoOn-positioning. The process of partnership positioning is conceptualised in a model.

    CONCLUSIONS: Our findings indicate that a new partnership in an implementation project needs holistic, systemic thinking. To enhance implementation in a collaborative project involving different professionals and actors a plan is required to facilitate positioning activities. The process, the roles and the components need to be clearly defined and documented, and the management of a system requires knowledge of the interrelationships between all the components within the system. The development of a conceptual model of Partnership Positioning contributes to knowledge concerning the social dynamic processes which can be applied to support future academic-community collaboration and/or implementation projects.

    TRIAL REGISTRATION: Not applicable. The present study has not been considered as a clinical trial.

  • 18.
    Rajan, Gita
    et al.
    Karolinska institutet.
    Wahlström, Lars
    Karolinska institutet.
    Philips, Björn
    Stockholms universitet.
    Wändell, Per
    Karolinska institutet.
    Wachtler, Caroline
    Karolinska institutet.
    Svedin, Carl Göran
    Ersta Sköndal Bräcke University College, Department of Social Sciences.
    Carlsson, Axel C.
    Karolinska institutet.
    Delayed healthcare access among victims of sexual abuse, understood through internal and external gatekeeping mechanisms2021In: Nordic Journal of Psychiatry, ISSN 0803-9488, E-ISSN 1502-4725, Vol. 75, no 5, p. 370-377Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Sexual abuse is associated with severe health consequences, and the European Union has, through the Istanbul Convention, urged its member countries to provide specialist care for victims of sexual abuse.

    AIM: This aim of this study was to investigate patient- and abuse-related characteristics among patients seeking help at a specialist clinic in Sweden, with focus on disclosure, mental health and appropriate healthcare access.

    METHODS: This is a descriptive study where journal data from 100 consecutive patients January 2017 to February 2018 were analyzed. All adult individuals (women n = 80, men n = 8) who had taken part in the standardized semi-structured intake interview at the clinic were included (n = 88).

    RESULTS: At admission, mean age was 40.3 (SD 11.9), mean number of psychiatric diagnoses 6.3 (2.6), and 93% of the patients scored above cut-off (≥34) on IES-R for PTSD. A majority of the patients (87%) had been exposed to childhood sexual abuse (CSA), and mean time to first disclosure was 15.9 (SD 15.3) years. In total, 82% of the patients had, despite disclosure, experienced difficulties accessing appropriate healthcare before coming to the specialist clinic.

    CONCLUSION: Adult victims of sexual abuse have difficulties accessing appropriate healthcare. This constitutes a gender-based equality problem. A model of gatekeeping mechanisms with two dimensions (external and internal) and three categories (Competence related, Organizational and Emotional) is proposed to understand these difficulties.

  • 19.
    Skinner, Marianne Sundlisæter
    et al.
    NTNU, Norges teknisk-naturvitenskapelige universitet, Gjøvik, Norway.
    Lorentzen, Håkon
    NTNU, Norges teknisk-naturvitenskapelige universitet, Gjøvik, Norway.
    Tingvold, Laila
    NTNU, Norges teknisk-naturvitenskapelige universitet, Gjøvik, Norway.
    Sortland, Oddrunn
    Høgskulen på Vestlandet, Bergen, Norway.
    Andfossen, Nina Beate
    NTNU, Norges teknisk-naturvitenskapelige universitet, Gjøvik, Norway.
    Jegermalm, Magnus
    Ersta Sköndal Bräcke University College, Department of Social Sciences. Jönköping University.
    Volunteers and Informal Caregivers' Contributions and Collaboration with Formal Caregivers in Norwegian Long-term Care2021In: Journal of Aging & Social Policy, ISSN 0895-9420, E-ISSN 1545-0821, Vol. 33, no 6, p. 647-672Article in journal (Refereed)
    Abstract [en]

    The article illuminates and discusses the realism of policy-makers' goals to increase involvement of volunteers and informal caregivers in long-term care services in Norway. Drawing on multiple data sources, the article investigates how commonplace volunteering and informal care are in long-term care, and it explores challenges experienced in collaboration between formal caregivers and volunteers and informal caregivers. The results show that only 4.4 percent of the Norwegian population carry out unpaid, voluntary work in long-term care. Twenty percent regularly provide informal care to someone with special care needs. Knowledge/information gaps and lacking coordination are common collaboration challenges between formal caregivers and volunteers/informal caregivers. The limitations identified in the current collaboration environment should be used actively by both policy makers and the practice field to critically assess goals and strategies for involvement and improving collaboration practices.

  • 20. Squires, Allison
    et al.
    Aiken, Linda H
    van den Heede, Koen
    Sermeus, Walter
    Bruyneel, Luk
    Lindqvist, Rikard
    Ersta Sköndal University College.
    Schoonoven, Lisette
    Stromseng, Ingeborg
    Busse, Reinhard
    Brozstek, Tomas
    Ensio, Anneli
    Moreno-Casbas, Mayte
    Rafferty, Anne Marie
    Schubert, Maria
    Zikos, Dimitris
    Matthews, Anne
    A systematic survey instrument translation process for multi-country, comparative health workforce studies.2013In: International Journal of Nursing Studies, ISSN 0020-7489, E-ISSN 1873-491X, Vol. 50, no 2, p. 264-273Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: As health services research (HSR) expands across the globe, researchers will adopt health services and health worker evaluation instruments developed in one country for use in another. This paper explores the cross-cultural methodological challenges involved in translating HSR in the language and context of different health systems. OBJECTIVES: To describe the pre-data collection systematic translation process used in a twelve country, eleven language nursing workforce survey. DESIGN AND SETTINGS: We illustrate the potential advantages of Content Validity Indexing (CVI) techniques to validate a nursing workforce survey developed for RN4CAST, a twelve country (Belgium, England, Finland, Germany, Greece, Ireland, Netherlands, Norway, Poland, Spain, Sweden, and Switzerland), eleven language (with modifications for regional dialects, including Dutch, English, Finnish, French, German, Greek, Italian, Norwegian, Polish, Spanish, and Swedish), comparative nursing workforce study in Europe. PARTICIPANTS: Expert review panels comprised of practicing nurses from twelve European countries who evaluated cross-cultural relevance, including translation, of a nursing workforce survey instrument developed by experts in the field. METHODS: The method described in this paper used Content Validity Indexing (CVI) techniques with chance correction and provides researchers with a systematic approach for standardizing language translation processes while simultaneously evaluating the cross-cultural applicability of a survey instrument in the new context. RESULTS: The cross-cultural evaluation process produced CVI scores for the instrument ranging from .61 to .95. The process successfully identified potentially problematic survey items and errors with translation. CONCLUSIONS: The translation approach described here may help researchers reduce threats to data validity and improve instrument reliability in multinational health services research studies involving comparisons across health systems and language translation.

  • 21.
    Sunnerhagen, Katharina Stibrant
    et al.
    Göteborgs Universitet.
    Danielsson, Anna
    Göteborgs Universitet.
    Rafsten, Lena
    Göteborgs Universitet.
    Björkdahl, Ann
    Ersta Sköndal University College, Department of Social Sciences. Göteborgs Universitet.
    Axelsson, Åsa B.
    Göteborgs Universitet.
    Nordin, Åsa
    Göteborgs Universitet.
    Petersson, Cathrine A.
    Göteborgs Universitet.
    Lundgren-Nilsson, Åsa
    Göteborgs Universitet.
    Fröjd, Karin
    Göteborgs Universitet.
    Gothenburg very early supported discharge study (GOTVED) NCT01622205: a block randomized trial with superiority design of very early supported discharge for patients with stroke2013In: BMC Neurology, E-ISSN 1471-2377, Vol. 13, article id 66Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Stroke is the disease with the highest costs for hospital care and also after discharge. Early supported discharge (ESD) has shown to be efficient and safe and the best results with well-organised discharge teams and patients with less severe strokes. The aim is to investigate if very early supported discharge (VESD) for stroke patients in need for on-going individualised rehabilitation at home is useful for the patient and cost effective.

    METHODS/DESIGN: A randomized controlled trial comparing VESD with ordinary discharge. Inclusion criteria: confirmed stroke, >18 years of age, living within 30 min from the stroke unit, on day 2 0-16 points on the National institute of health stroke scale (NIHSS) and 50-100 points on the Barthel Index (BI), with BI 100 then the patient can be included if the Montreal Cognitive Assessment is < 26. Exclusion criteria are: NIHSS >16, BI < 50, life expectancy < 1 year, inability to speak or to communicate in Swedish. The inclusion occurs on day 4 and in block randomization of 20 and with blinded assessor. Primary outcome: levels of anxiety and depression. Secondary outcomes: independence, security, level of function, quality of health, needs of support in activities of daily living and caregiver burden. Power calculation is based on the level of anxiety and with a power of 80%, p-value 0.05 (2 sided test) 44 persons per group are needed. Data is gathered on co-morbidity, re-entry to hospital, mortality and a health economic analysis. Interviews will be accomplished with a strategic sample of 15 patients in the intervention group before discharge, within two weeks after homecoming and 3 months later. Interviews are also planned with 15 relatives in the intervention group 3 months after discharge.

    DISCUSSION: The ESD studies in the Cochrane review present hospital stays of a length that no longer exist in Sweden. There is not yet, to our knowledge, any study of early supported discharge with present length of hospital stay. Thus it is not clear if home rehabilitation nowadays without risks, is cost effective, or with the same patient usefulness as earlier studies.

    TRIAL REGISTRATION: ClinicalTrials.gov NCT01622205.

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