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  • 1.
    af Winklerfelt Hammarberg, Sandra
    et al.
    Karolinska Institutet, Stockholm, Academic Primary Health Care Centre, Region Stockholm, Stockholm.
    Björkelund, Cecilia
    Sahlgrenska Academy, University of Gothenburg, Gothenburg.
    Nejati, Shabnam
    Sahlgrenska Academy, University of Gothenburg, Gothenburg.
    Magnil, Maria
    Sahlgrenska Academy, University of Gothenburg, Gothenburg.
    Hange, Dominique
    Sahlgrenska Academy, University of Gothenburg, Gothenburg; Region Västra Götaland, Närhälsan Research and Development Primary Health Care, Gothenburg.
    Svenningsson, Irene
    Sahlgrenska Academy, University of Gothenburg, Gothenburg; Region Västra Götaland, Närhälsan Research and Development Primary Health Care, Gothenburg.
    Petersson, Eva‑Lisa
    Sahlgrenska Academy, University of Gothenburg, Gothenburg; Region Västra Götaland, Närhälsan Research and Development Primary Health Care, Gothenburg.
    Udo, Camilla
    Dalarna University, School of Health and Welfare, Social Work. Division of Health Care Science, Marie Cederschiöld University, Stockholm; Center for Clinical Research Dalarna, Uppsala University, Falun.
    Wallin, Lars
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    Westman, Jeanette
    Karolinska Institutet, Stockholm; Academic Primary Health Care Centre, Region Stockholm, Stockholm; Uppsala University, Uppsala.
    Clinical effectiveness of care managers in collaborative primary health care for patients with depression: 12‑ and 24‑month follow‑up of a pragmatic cluster randomized controlled trial2022In: BMC Primary Care, E-ISSN 2731-4553, Vol. 23, no 1, article id 198Article in journal (Refereed)
    Abstract [en]

    Background: In previous studies, we investigated the effects of a care manager intervention for patients withdepression treated in primary health care. At 6 months, care management improved depressive symptoms, remission,return to work, and adherence to anti-depressive medication more than care as usual. The aim of this study wasto compare the long-term effectiveness of care management and usual care for primary care patients with depressionon depressive symptoms, remission, quality of life, self-efficacy, confidence in care, and quality of care 12 and24 months after the start of the intervention.Methods: Cluster randomized controlled trial that included 23 primary care centers (11 intervention, 12 control)in the regions of Västra Götaland and Dalarna, Sweden. Patients ≥18 years with newly diagnosed mild to moderatedepression (n = 376: 192 intervention, 184 control) were included. Patients at intervention centers co-developed astructured depression care plan with a care manager. Via 6 to 8 telephone contacts over 12 weeks, the care managerfollowed up symptoms and treatment, encouraged behavioral activation, provided education, and communicatedwith the patient’s general practitioner as needed. Patients at control centers received usual care. Adjusted mixedmodel repeated measure analysis was conducted on data gathered at 12 and 24 months on depressive symptomsand remission (MADRS-S); quality of life (EQ5D); and self-efficacy, confidence in care, and quality of care (study-specificquestionnaire).Results: The intervention group had less severe depressive symptoms than the control group at 12 (P = 0.02) butnot 24 months (P = 0.83). They reported higher quality of life at 12 (P = 0.01) but not 24 months (P = 0.88). Differencesin remission and self-efficacy were not significant, but patients in the intervention group were more confident that they could get information (53% vs 38%; P = 0.02) and professional emotional support (51% vs 40%; P = 0.05) from theprimary care center.Conclusions: Patients with depression who had a care manager maintained their 6-month improvements in symptomsat the 12- and 24-month follow-ups. Without a care manager, recovery could take up to 24 months. Patients withcare managers also had significantly more confidence in primary care and belief in future support than controls.

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  • 2. af Winklerfelt Hammarberg, Sandra
    et al.
    Hange, Dominique
    André, Malin
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Svenningsson, Irene
    Björkelund, Cecilia
    Petersson, Eva-Lisa
    Westman, Jeanette
    Care managers can be useful for patients with depression but their role must be clear: a qualitative study of GPs’ experiences2019In: Scandinavian Journal of Primary Health Care, ISSN 0281-3432, E-ISSN 1502-7724, Vol. 37, no 3, p. 273-282Article in journal (Refereed)
    Abstract [en]

    Objective: Explore general practitioners’ (GPs’) views on and experiences of working with care managers for patients treated for depression in primary care settings. Care managers are specially trained health care professionals, often specialist nurses, who coordinate care for patients with chronic diseases.

    Design: Qualitative content analysis of five focus-group discussions.

    Setting: Primary health care centers in the Region of Västra Götaland and Dalarna County, Sweden.

    Subjects: 29 GPs.

    Main outcome measures: GPs’ views and experiences of care managers for patients with depression.

    Results: GPs expressed a broad variety of views and experiences. Care managers could ensure care quality while freeing GPs from case management by providing support for patients and security and relief for GPs and by coordinating patient care. GPs could also express concern about role overlap; specifically, that GPs are already care managers, that too many caregivers disrupt patient contact, and that the roles of care managers and psychotherapists seem to compete. GPs thought care managers should be assigned to patients who need them the most (e.g. patients with life difficulties or severe mental health problems). They also found that transition to a chronic care model required change, including alterations in the way GPs worked and changes that made depression treatment more like treatment for other chronic diseases.

    Conclusion: GPs have varied experiences of care managers. As a complementary part of the primary health care team, care managers can be useful for patients with depression, but team members’ roles must be clear.

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  • 3. Alexandersson, Karin
    et al.
    Nyström Svensk, Ingrid
    Olsson, Helén
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Försörjningsstöd som leverbröd - Det ekonomiska biståndets utveckling 2007-2008, i sex kommuner i Dalarna, i relation till förändringar i det svenska välfärdssystemet.2008Report (Other academic)
  • 4.
    Ayoub, Maria
    et al.
    Dalarna University, School of Health and Welfare, Care Sciences. Dalarna University, School of Health and Welfare, Social Work.
    Udo, Camilla
    Dalarna University, School of Health and Welfare, Social Work.
    Randell, Eva
    Dalarna University, School of Health and Welfare, Social Work.
    Promoting social engagement for young adults living in social isolation in Sweden: Social workers and health care professionals’ perceptions of success factors2023In: Nordic Social Work Research, ISSN 2156-857X, E-ISSN 2156-8588, no 1, p. 63-75Article in journal (Refereed)
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  • 5.
    Ayoub, Maria
    et al.
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Randell, Eva
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Promoting social engagement for young adults living in social isolation: Social workers and health care professionals' perceptions of success factors2019Conference paper (Other academic)
    Abstract [en]

    Background: Today the global number of young adults not in employment, education or training seem to increase. A large proportion of the group are unemployed and disengaged and have not been in contact with any authority. Thus, they are invisible to many community services and official agencies. The situation standing outside the society may have negative long-term health effects and statistics shows that more than a third of the target group after ten years still not work or study. Socially withdrawn youth is a complex phenomenon and very few young adults seek help, often due to their lack of motivation. For this reason, unemployed and inactive young people are often described as being a difficult group to support and engage. Further, there is currently limited evidence on the effects of interventions directed to socially withdrawn youth not in employment or education and the use of evidence-based practice has to be improved.

    Aim: The aim of this study was to investigate social workers and health care professionals’ experiences of working with young adults living in social isolation, and to identify which interventions the professionals find most successful in supporting the young adults’ engagement in society.

    Methods: In this study a qualitative method was used. Ten semi-structured interviews were conducted that included thirteen employees from social services and outpatient psychiatric clinics in a Swedish county. Data were analyzed using thematic network analysis.

    Results: Analysis resulted in two general thematic networks: ”barriers of the transition into adulthood” and ”to manage complex needs”. Participants tended to associate the issues of young adults with difficulties related to transition into adulthood. Mental health problems, low self-esteem, school related problems and limited social networks also came out in the interviews as factors that characterized unemployed and disengaged socially withdrawn youths. Participants described that successful work to re-engage these young adults included an empowerment-oriented perspective with a focus on the individual strengths, integrated and coordinated interventions and a flexible working approach.

    Conclusion: Today the societal changes and the process of individualization place greater demands on individual resources and capabilities which might increase the risk of social exclusion. Participants indicated that the complex problems of socially isolated young adults and experiences of long-term disengagement may contribute to stable and persistent withdrawal from society. Early identification and support for youths at risk of social withdrawal, a holistic approach, multifaceted interventions and tailored and flexible activities is deemed crucial to help reintegrate these young people. Further investigation is required to examine the effects of interventions targeting socially withdrawn and inactive young adults.

     

  • 6.
    Ayoub, Maria
    et al.
    Dalarna University, School of Health and Welfare, Care Sciences. Dalarna University, School of Health and Welfare, Social Work.
    Udo, Camilla
    Dalarna University, School of Health and Welfare, Social Work.
    Årestedt, Kristofer
    Department of Health and Caring Sciences, Faculty of Health and Life Science, Linnaeus University, 352 52 Växjö, Sweden.
    Kreicbergs, Ulrika
    Department of Health Care Sciences, Palliative Research Centre, Marie Cederschiöld University, 116 28 Stockholm, Sweden;Department of Women’s and Children’s Health, Childhood Cancer Research Unit, Karolinska Institute, 171 77 Solna, Sweden;Louis Dundas Center, Great Ormond Street Institute of Child Health, University College London, London WC1N 1EH, UK.
    Lövgren, Malin
    Department of Health Care Sciences, Palliative Research Centre, Marie Cederschiöld University, 116 28 Stockholm, Sweden;Advanced Pediatric Home Care, Astrid Lindgren Children’s Hospital, Karolinska University Hospital, 171 64 Solna, Sweden.
    The Family Talk Intervention in Pediatric Oncology: Potential Effects Reported by Parents2024In: Children, E-ISSN 2227-9067, Vol. 11, no 1, p. 95-95Article in journal (Refereed)
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  • 7. Björkelund, Cecilia
    et al.
    Svenningsson, Irene
    Hange, Dominique
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Petersson, Eva-Lisa
    Ariai, Nashmil
    Nejati, Shabnam
    Wessman, Catrin
    Wallin, Lars
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Göteborgs universitet; Karolinska institutet.
    Westman, Jeanette
    Clinical effectiveness of care managers in collaborative care for patients with depression in Swedish primary health care: a pragmatic cluster randomized controlled trial.2018In: BMC Family Practice, E-ISSN 1471-2296, Vol. 19, no 1, article id 28Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Depression is one of the leading causes of disability and affects 10-15% of the population. The majority of people with depressive symptoms seek care and are treated in primary care. Evidence internationally for high quality care supports collaborative care with a care manager. Our aim was to study clinical effectiveness of a care manager intervention in management of primary care patients with depression in Sweden.

    METHODS: In a pragmatic cluster randomized controlled trial 23 primary care centers (PCCs), urban and rural, included patients aged ≥ 18 years with a new (< 1 month) depression diagnosis. Intervention consisted of Care management including continuous contact between care manager and patient, a structured management plan, and behavioral activation, altogether around 6-7 contacts over 12 weeks. Control condition was care as usual (CAU).

    OUTCOME MEASURES: Depression symptoms (measured by Mongomery-Asberg depression score-self (MADRS-S) and BDI-II), quality of life (QoL) (EQ-5D), return to work and sick leave, service satisfaction, and antidepressant medication. Data were analyzed with the intention-to-treat principle.

    RESULTS: One hundred ninety two patients with depression at PCCs with care managers were allocated to the intervention group, and 184 patients at control PCCs were allocated to the control group. Mean depression score measured by MADRS-S was 2.17 lower in the intervention vs. the control group (95% CI [0.56; 3.79], p = 0.009) at 3 months and 2.27 lower (95% CI [0.59; 3.95], p = 0.008) at 6 months; corresponding BDI-II scores were 1.96 lower (95% CI [- 0.19; 4.11], p = 0.07) in the intervention vs. control group at 6 months. Remission was significantly higher in the intervention group at 6 months (61% vs. 47%, p = 0.006). QoL showed a steeper increase in the intervention group at 3 months (p = 0.01). During the first 3 months, return to work was significantly higher in the intervention vs. the control group. Patients in the intervention group were more consistently on antidepressant medication than patients in the control group.

    CONCLUSIONS: Care managers for depression treatment have positive effects on depression course, return to work, remission frequency, antidepressant frequency, and quality of life compared to usual care and is valued by the patients.

    TRIAL REGISTRATION: Identifier: NCT02378272 . February 2, 2015. Retrospectively registered.

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  • 8.
    Björkelund, Cecilia
    et al.
    Department of Primary Health Care, Institute of Medicine, The Sahlgrenska Academy, University of Gothenburg; Region Västra Götaland, Närhälsan Research and Development Primary Health Care, Gothenburg.
    Svenningsson, Irene
    Department of Primary Health Care, Institute of Medicine, The Sahlgrenska Academy, University of Gothenburg; Region Västra Götaland, Närhälsan Research and Development Primary Health Care, Gothenburg.
    Petersson, Eva-Lisa
    Department of Primary Health Care, Institute of Medicine, The Sahlgrenska Academy, University of Gothenburg; Region Västra Götaland, Närhälsan Research and Development Primary Health Care, Gothenburg.
    Hange, Dominique
    Department of Primary Health Care, Institute of Medicine, The Sahlgrenska Academy, University of Gothenburg; Region Västra Götaland, Närhälsan Research and Development Primary Health Care, Gothenburg.
    Holst, Anna
    Department of Primary Health Care, Institute of Medicine, The Sahlgrenska Academy, University of Gothenburg; Region Västra Götaland, Närhälsan Research and Development Primary Health Care, Gothenburg.
    Westman, Jeanette
    Ersta Sköndal Bräcke högskola, Stockholm.
    Wallin, Lars
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Region Dalarna; Sahlgrenska akademin, Göteborg.
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work. Centrum för klinisk forskning Dalarna; Region Dalarna.
    André, Malin
    Uppsala universitet.
    Möller, Christina
    Koncernkontoret, Västra Götalandsregionen.
    Vårdsamordnare för depression: effektivt grepp i primärvården2019In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 116, article id 2019;116:FSH3Article in journal (Refereed)
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  • 9.
    Eilegård Wallin, Alexandra
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke högskola.
    Lövgren, Malin
    Ersta Sköndal Bräcke högskola.
    Cancer-bereaved siblings advice to peers: A nationwide follow-up survey2019Conference paper (Refereed)
  • 10.
    Eilegård Wallin, Alexandra
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke Högskola.
    Lövgren, Malin
    Ersta Sköndal Bräcke Högskola.
    Cancer-bereaved siblings' advice to peers: a nationwide follow-up survey2020In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 44, no 9, p. 561-568Article in journal (Refereed)
    Abstract [en]

    The aim of this nationwide survey was to explore, based on an open-ended question, cancer-bereaved siblings’ advice to peers with a brother or sister with cancer. Half of the advice related to being with the ill sibling and cherishing the time together. Other advice related to the value of communicating about the situation, letting go of guilt, and living life as usual. The results highlight the importance of health care professionals, family, and others facilitating for siblings to spend time together and communicate openly.

  • 11. Eklund, Rakel
    et al.
    Lövgren, Malin
    Alvariza, Anette
    Kreicbergs, Ulrika
    Udo, Camilla
    Dalarna University, School of Health and Welfare, Social Work. Ersta Sköndal Bräcke University College, Stockholm; Center for Clinical Research (CKF) Dalarna, Uppsala University.
    Talking about death when a parent with dependent children dies of cancer: A pilot study of the Family Talk Intervention in palliative care.2022In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 46, no 10, p. 2384-2394Article in journal (Refereed)
    Abstract [en]

    This study focused on families with dependent children who participated in the Family Talk Intervention (FTI) and lost a parent during the intervention or directly thereafter. The aim was to explore how they perceived information and communication about the imminent death during the illness trajectory and after the loss. Seven families from palliative homecare settings in Sweden participated. This study suggests that it is important to support family communication when a parent is dying, since communication in this situation is unlike everyday family communication, as they enter a complex and existentially unfamiliar area, hard to initiate on their own.

  • 12.
    Eneslätt, Malin
    et al.
    Marie Cederschiöld högskola.
    Ayoub, Maria
    Dalarna University, School of Health and Welfare, Care Sciences. Dalarna University, School of Health and Welfare, Social Work.
    Udo, Camilla
    Dalarna University, School of Health and Welfare, Social Work.
    Kreicbergs, Ulrika
    Marie Cederschiöld högskola.
    Lövgren, Malin
    Marie Cederschiöld högskola.
    Mål och innehåll i samtal med familjer  inom stödprogrammet Family Talk Intervention i barnonkologi2023Conference paper (Refereed)
  • 13.
    Ericson, Jenny
    et al.
    Uppsala University; Centre for Clinical Research Dalarna, Falun; Department of Paediatrics, Falu Hospital.
    Flacking, Renée
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Mothers' experiences of a telephone-based breastfeeding support intervention after discharge from neonatal intensive care units - a mixed-method study2017In: International Breastfeeding Journal, ISSN 1746-4358, E-ISSN 1746-4358, Vol. 12, no 1, article id 50Article in journal (Refereed)
    Abstract [en]

    Background: After discharge from a neonatal intensive care unit (NICU), many mothers of preterm infants (gestational age<37 weeks) experience a lack of support for breastfeeding. An intervention study was designed to evaluate the effects of proactive (a daily telephone call initiated by a member of a breastfeeding support team) and/or reactive (mothers could call the breastfeeding support team) telephone based breastfeeding support for mothers after discharge from the NICU. The mothers in the intervention group had access to both proactive and reactive support; the mothers in the control group only had access to reactive support. The aim of this study was to explore the mothers' experiences of the proactive and reactive telephone support.

    Methods: This study was a qualitatively driven, mixed-method evaluation using three data sources: questionnaires with qualitative open-ended questions, visual analogue scales and telephone interviews. In total, 365 mothers contributed data for this study. The qualitative data were analysed with an inductive thematic network analysis, while the quantitative data were analysed with Student's t-test and the chi-square test.

    Results: Proactive support contributed to greater satisfaction and involvement in breastfeeding support. The mothers who received proactive support reported that they felt strengthened, supported and secure, as a result of the continuous care provided by staff who were knowledgeable and experienced (i.e., in breastfeeding and preterm infants), which resulted in the global theme 'Empowered by proactive support'. The mothers who received reactive support experienced contradictory feelings; some felt secure because they had the opportunity to call for support, whereas others found it difficult to decide when and if they should use the service, which resulted in the global theme; 'Duality of reactive support'.

    Conclusion: There were positive aspects of both proactive (i.e., greater satisfaction and feelings of empowerment) and reactive support (i.e., the opportunity to call for support); however, the provision of reactive support alone may be inadequate for those with the greatest need for support as they are the least likely to access it.

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  • 14. Henoch, Ingela
    et al.
    Browall, Maria
    Melin-Johansson, Christina
    Danielson, Ella
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Johansson Sundler, Annelie
    Björk, Maria
    Ek, Kristina
    Hammarlund, Kina
    Strang, Susann
    The Swedish version of the Frommelt Attitude Toward Care of the Dying Scale (FATCOD): Aspects of validity and factors influencing nurses' and nursing students' attitudes2014In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 37, no 1Article in journal (Refereed)
    Abstract [en]

    Background: Nurses' attitudes toward caring for dying persons need to be explored. The Frommelt Attitude Toward Care of the Dying (FATCOD) scale has not previously been used in Swedish language.

    Objectives: The objectives of this study were to compare FATCOD scores among Swedish nurses and nursing students with those from other languages, to explore the existence of 2 subscales, and to evaluate influences of experiences on attitudes toward care of dying patients.

    Methods: A descriptive, cross-sectional, and predictive design was used. The FATCOD scores of Swedish nurses from hospice, oncology, surgery clinics, and palliative home care and nursing students were compared with published scores from the United States, Israel, and Japan. Descriptive statistics, t tests, and factor and regression analyses were used.

    Results: The sample consisted of 213 persons: 71 registered nurses, 42 enrolled nurses, and 100 nursing students. Swedish FATCOD mean scores did not differ from published means from the United States and Israel, but were significantly more positive than Japanese means. In line with Japanese studies, factor analyses yielded a 2-factor solution. Total FATCOD and subscales had low Cronbach [alpha]'s. Hospice and palliative team nurses were more positive than oncology and surgery nurses to care for dying patients.

    Conclusions: Although our results suggest that the Swedish FATCOD may comprise 2 distinct scales, the total scale may be the most adequate and applicable for use in Sweden. Professional experience was associated with nurses' attitudes toward caring for dying patients.

    Implication for Practice: Care culture might influence nurses' attitudes toward caring for dying patients; the benefits of education need to be explored.

  • 15.
    Högsnes, Monika
    et al.
    Karlstads universitet.
    Grim, Katarina
    Karlstads universitet.
    Udo, Camilla
    Dalarna University, School of Health and Welfare, Social Work.
    Ullsten, Alexandra
    Region Värmland.
    Landstedt, Evelina
    Karlstads universitet.
    Psychosocial support in healthcare settings from the perspective of persons with acquired brain injury (ABI) and their relatives2023Conference paper (Refereed)
  • 16. Landfeldt, Erik
    et al.
    Udo, Camilla
    Dalarna University, School of Health and Welfare, Social Work. Stockholm University; Marie Cederschiöld University, Stockholm; Center for Clinical Research Dalarna-Uppsala University, Falun.
    Lövgren, Malin
    Marie Cederschiöld högskola.
    Sejersen, Thomas
    Kreicbergs, Ulrika
    Marie Cederschiöld högskola.
    Health-related quality of life of children with spinal muscular atrophy in Sweden: A prospective cohort study in the era of disease-modifying therapy2023In: European journal of paediatric neurology, ISSN 1090-3798, E-ISSN 1532-2130, Vol. 46, p. 67-73Article in journal (Refereed)
    Abstract [en]

    The objective of this study was to estimate change over time in health-related quality of life (HRQoL) of children with spinal muscular atrophy (SMA) in Sweden. Children with SMA were identified via the National Patient Register by the National Board of Health and Welfare in Sweden. Patient HRQoL was caregiver proxy-assessed using the Pediatric Quality of Life Inventory 4.0 Generic Core Scales at baseline, as well as at 6, 12, and 18 months of follow-up. Results were stratified by SMA type. Mothers and fathers to 27 children with SMA (mean patient age: 9.17 years; 59% female) participated in the study. All patients received disease-modifying therapy. At baseline, across SMA types, the mean total score was estimated at between 52.68 and 59.19, Physical Functioning score at between 26.39 and 40.34, Emotional Functioning score at between 66.82 and 68.57, Social Functioning score at between 55.00 and 70.45, and School Functioning score at between 70.45 and 78.33. The mean annual total score change was estimated at −2.03 for SMA type I, 4.11 for SMA type II, and 1.12 for SMA type III. In conclusion, we show that SMA has a detrimental impact on HRQoL that extends above and beyond somatic disability. Children with SMA type II experienced a dramatic increase in HRQoL over time, predominantly related to improvement in physical and social functioning. Our data helps quantify the patient burden of disease and adds to the rapidly expanding body of evidence of the effectiveness of recently approved disease-modifying therapies for SMA. © 2023 European Paediatric Neurology Society

  • 17.
    Lövgren, Malin
    et al.
    Department of Health Care Sciences, Palliative Research Centre, Ersta Sköndal Bräcke University College, Stockholm, Sweden.
    Kreicbergs, Ulrika
    Department of Health Care Sciences, Palliative Research Centre, Ersta Sköndal Bräcke University College, Stockholm, Sweden.
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Family talk intervention in paediatric oncology: a pilot study protocol2019In: BMJ Paediatrics Open, E-ISSN 2399-9772, Vol. 3, no 1, article id e000417Article in journal (Refereed)
    Abstract [en]

    Introduction: There is evidence that families with a child diagnosed with cancer need psychosocial support throughout the illness trajectory. Unfortunately, there is little research into psychosocial interventions for such families, especially interventions where the entire family is involved. The aim of this pilot study is therefore to evaluate a psychosocial intervention, the family talk intervention(FTI), in paediatric oncology in terms of study feasibility and potential effects.

    Methods and analysis: This pretest/post-test intervention pilot study is based on families with a child diagnosed with cancer. All families that include at least one child aged 6–19 years (ill child and/or sibling) at one of the six paediatric oncology centres in Sweden between September 2018 and September 2019 will be asked about participation. The intervention consists of six meetings with the family (part of the family or the entire family), led by two interventionists. The core elements in the interventionare to support the families in talking about the illness and related subjects, support the parents in understandingthe needs of their children and how to support them and support the families in identifying their strengths and howto use them best. Mixed methods are used to evaluatethe intervention (web-based questionnaires, interviews, field notes and observations). Self-reported data from all family members are collected at baseline, directly after the intervention and 6 months later. Study outcomes are family communication, knowledge about the illness, resilience, quality of life and grief.

    Ethics and dissemination: The study has been approved by the Regional Ethical Review Board in Stockholm (Dnr 2018/250-31/2 and 2018/1852–32). Data are processed in coded form, accessible only to the research team and stored at Ersta Sköndal Bräcke University College in a secure server.

    Trial registration: ClinicalTrials. gov IdentifierNCT03650530, registered in August 2018.

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  • 18.
    Lövgren, Malin
    et al.
    Ersta Sköndal Bräcke högskola.
    Melin-Johansson, Christina
    Ersta Sköndal Bräcke Högskola.
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work. Ersta Sköndal Bräcke Högskola; Ctr Clin Res Dalarna.
    Sveen, Josefin
    Ersta Sköndal Bräcke högskola.
    Telling the truth to dying children — end-of-life communication with families2019In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 108, no 11, p. 2111-2112Article in journal (Refereed)
    Abstract [en]

    Communicating a terminal prognosis is challenging for patients, families and healthcare professionals. However, positive effects have been reported when children are told about their diagnosis and prognosis, including fewer symptoms of anxiety and depression and enhanced adherence to treatment (1). When research about prognostic communication was first published in the 1950s and 1960s, it recommended protecting children from bad news. By the late 1960s, a more open approach was recommended and by the late 1980s the advice was to always tell children. There has been a growing awareness of the complexity of prognostic disclosure and the need to balance often competing factors, such as hope and patient and family considerations, on a case-to-case basis (2).

  • 19.
    Lövgren, Malin
    et al.
    Ersta Sköndal Bräcke högskola.
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work. Ersta Sköndal Bräcke University College, Center for Clinical Research Dalarna, Falun.
    Alvariza, Anette
    Ersta Sköndal Bräcke högskola.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke högskola.
    Much is left unspoken: Self-reports from families in pediatric oncology2020In: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, article id e28735Article in journal (Refereed)
    Abstract [en]

    Background: Communication about illness-related subjects is complex and difficult. To support entire families in pediatric oncology, health care professionals need to know what family members think, but leave unspoken. The aim of this study was to explore how families in pediatric oncology experienced illness-related information and communication with professionals and within the family.Procedure: A cross-sectional web survey was used. Families were recruited from one pediatric oncology center in Sweden, 2-3 months after diagnosis. One hundred eighteen family members (ill children, siblings, and parents) representing 27 families filled out age-adapted surveys.Results: Eighty-six percent of the parents and 71% of the siblings reported that theyhad not received enough or any information about how the cancer and its treatment could affect the child’s psychological health. The families reported that they did not dare ask professionals questions about psychosocial issues and future-related subjects.Nor did they talk with one another, even though 55% of the parents and 24% ofthe children wanted to reveal more about how they felt to someone in the family. The parents reported the lowest family communication, and few families had all members reporting the same perception of family communication. Conclusions: Much is still left unspoken in pediatric oncology and the needs of the families are prominent. Assessments of each family member’s needs might form a basis for professionals to give each person adequate information and family support. An increased awareness in families about family members’ different needs might lead to mutual understanding.

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  • 20.
    Lövgren, Malin
    et al.
    Marie Cederschiöld högskola.
    Udo, Camilla
    Dalarna University, School of Health and Welfare, Social Work.
    Eklund, Rakel
    Uppsala universitet.
    Kreicbergs, Ulrika
    Marie Cederschiöld högskola.
    Is the Family Talk Intervention feasible in pediatric oncology? An evaluation of a family-based psychosocial intervention2022Conference paper (Refereed)
    Abstract [en]

    Background and Aims: As there are few evaluated family interventions in pediatric oncology, this study aimed to pilot-test a family-based psychosocial intervention, the Family Talk Intervention (FTI), in pediatric oncology in terms of retention, delivery, response rate, and acceptability from the parents’ and ill children’s perspectives. Methods:This pre-post pilot study included 26 families (115 family members) affected by childhood cancer of which a majority had a CNS tumor or relapse. FTI is led by professionals, often social workers, and aims to facilitate family communication about illness-related subjects, e.g. prognosis, support parenting, and make the children’s needs visible. FTI encompasses six meetings, both individual and as a family. Meeting 5, referred to as “the family talk”, is preferably led by the parents. Extra meetings are offered if needed. This abstract includes observational and surveys data, and interviews with parents and ill children (sibling data is presented elsewhere). Results: All families who started FTI underwent the full intervention. Survey response rate varied between 100% and 71% over time. Extra meetings were held with most families. The parents stated that FTI filled a gap of support to the family as a unit and that, since FTI was conducted at home, it felt safe and supportive. According to most parents and ill children, FTI came right in time, included a reasonable number of meetings, with appropriate length. The family members felt listened to and understood. They reported that FTI had helped them, e.g. with family communication, adjustment of their behavior, and strengthened relationships. The parents valued the children’s perspectives being considered, but some felt uncomfortable leading meeting. Conclusions: FTI was valuable and helpful according to the parents and the ill children. Even if FTI seemed feasible in pediatric oncology it would benefit from being slightly modified before a large trial can be conducted. 

  • 21.
    Lövgren, Malin
    et al.
    Ersta Sköndal Bräcke högskola.
    Udo, Camilla
    Dalarna University, School of Health and Welfare, Social Work. Ersta Sköndal Bräcke högskola; Center for Clinical Research Dalarna- Uppsala University.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke högskola.
    Is the Family Talk Intervention feasible in paediatric oncology? An evaluation of a family-based psychosocial intervention2022In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 111, no 3, p. 684-692Article in journal (Refereed)
  • 22. Matérne, Marie
    et al.
    Udo, Camilla
    Dalarna University, School of Health and Welfare, Social Work.
    Thermaenius, Ingrid
    Strandberg, Thomas
    Dalarna University, School of Health and Welfare, Social Work.
    Hälso- och sjukvårdskuratorns funktion i rehabilitering för personer med stroke2022In: Socialmedicinsk Tidskrift, ISSN 0037-833X, no 1, p. 76-86Article in journal (Refereed)
    Abstract [sv]

    Att stödja patienter i rehabilitering efter stroke är en viktig funktion för hälsoochsjukvårdskuratorn. I denna artikel analyseras hälso- och sjukvårdskuratornsfunktion utifrån ett systemteoretiskt perspektiv med stöd av patienternaserfarenheter av resiliens och livskvalitet. Intervjuer med 19 personermed stroke sekundäranalyserades tematiskt och resulterade i fem områdenav betydelse för hälso- och sjukvårdskuratorns funktion. De teman somframkom på mikronivå var: trygghet och förutsägbarhet; mening och hopp.På mesonivå: socialt och formellt stöd; samordna och informera. På makronivå:kunskapsspridning och kompetens. Den legitimerade hälso- och sjukvårdskuratornfunktioner återfinns således systemteoretiskt på alla nivåervilket innebär att de professionellt antar en helhetssyn med fokus på individeni relation till dennes situation och kontext.

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  • 23.
    Melin-Johansson, Christina
    et al.
    Ersta Sköndal Bräcke högskola.
    Lagerin, Annika
    Ersta Sköndal Bräcke högskola.
    Lind, Susanne
    Ersta Sköndal Bräcke högskola.
    Lövgren, Malin
    Ersta Sköndal Bräcke högskola.
    Sveen, Josefin
    Ersta Sköndal Bräcke högskola.
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    End-of-life communication from a life cycle perspective: a register study2019Conference paper (Refereed)
  • 24. Melin-Johansson, Christina
    et al.
    Sveen, Josefin
    Lövgren, Malin
    Udo, Camilla
    Dalarna University, School of Health and Welfare, Social Work. Ersta Sköndal Bräcke University College, Stockholm; Center for Clinical Research (CKF), Dalarna.
    A third of dying patients do not have end-of-life discussions with a physician: A nationwide registry study.2022In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 20, no 3, p. 357-362Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The aim of the study was to explore the proportion of adult patients and next-of-kin who had end-of-life (EOL) discussions and associated factors.

    METHOD: A retrospective nationwide registry study was reported with data from the Swedish Register of Palliative Care. All patients in Sweden in hospitals, nursing homes, own homes, community, and palliative care units during 2015-2017 and their next-of-kin were included. Data were reported to the register by healthcare staff, based on diseased patients' records regarding their last days of life, and were voluntary. Descriptive statistics illustrated the proportion of patients/next-of-kin who had EOL discussions and logistic regressions were used to examine associated factors.

    RESULTS: About half of the patients (46%) did have an EOL discussion, but a third (32%) did not. Associated factors of those who did not have an EOL discussion were dementia (48.5%) or stroke (47.5%), older age (38.4%), being female (33.6%), being cared for in a nursing home (41.3%), or hospital (40.3%), having lost decision-making ability months before death (58.9%), and not having a documented decision to shift to EOL care (82.7%). Younger patients diagnosed with cancer and cared for at a palliative unit were more likely to have EOL discussions. The regression analysis showed similar results for next-of-kin.

    SIGNIFICANCE OF RESULTS: The result shows that not all patients with palliative care needs have equal access to EOL discussions, despite efforts at a national level and the recognized benefits of timely communication about the EOL care. Further efforts must be made to achieve EOL discussions for all patients.

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  • 25.
    Melin-Johansson, Titti
    et al.
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Mening2020In: Palliativ vård: Begrepp och perspektiv i teori och praktik / [ed] Birgitta Andershed och Britt-Marie Ternestedt, Stockholm: Studentlitteratur AB, 2020Chapter in book (Refereed)
    Abstract [sv]

    Vad är ett gott liv nära döden och hur kan ett sådant främjas? Många olika synsätt existerar sida vid sida och det finns inte enbart ett enkelt svar. För att fånga den enskilda personens behov krävs ett personcentrerat förhållningssätt där patienter och närstående är självklara aktörer. Behovet av kunskap om döende, död och palliativ vård har blivit extra tydligt i samband med den pandemi som drabbade världen våren 2020. Detta är den andra omarbetade och uppdaterade utgåvan av boken. Nya kapitel: Möte med religion i det nya Sverige, Mening, Sorg samt Medicinska aspekter på döendefasen kompletterar detta redan gedigna verk. Centrala begrepp och perspektiv i teori och praktik belyses i bokens sju delar: Att möta döden i vår samtid,Värdegrund och förhållningssätt, Identitet,autonomi och delaktighet, Smärta, lidande och sorg, Stöd, tröst och mening, Livet nära döden- tidigt och sent i livet och Den palliativa vårdens praktik. Samtliga kapitel i boken har en tydlig vetenskaplig grund. Författarna är aktiva forskare med olika yrkesbakgrund och erfarenheter av palliativ vård. Boken vänder sig till studenter på grundnivå och avancerad nivå inom hälso- och sjukvårdsprogrammen, men även forskare, beslutsfattare och en intresserad allmänhet kan ha nytta av att läsa boken

  • 26.
    Olsen, Marie
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Dahlberg, Lena
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Boström, Anne-Marie
    Institutionen för Neurobiologi, Vårdvetenskap och Samhälle, Karolinska Institutet.
    McKee, Kevin
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Older people’s views on the important values in home help provision: a Swedish study2018Conference paper (Refereed)
    Abstract [en]

    Little is known about the values that older people consider important in receipt of home help. Therefore, this study aimed to explore which values older people hold in relation to home help services and their experiences of how these values are reflected in the delivery of help. Interviews were conducted from November 2015 to March 2016 with 16 older persons (age ≥65 years) who received home help at the time of the study. Data were analysed using qualitative content analysis. Results identified values that older people find important in home help and suggest behaviours that should underpin home help, such as supporting the older person’s independence, building a reciprocal relationship and promoting a sense of safety and security (e.g., by providing information about what home help entails for the recipient). We conclude that it is important that care staff recognise and integrate these values into their actions on an interpersonal level in daily care, adopting a relation-oriented rather than a task-focused approach in the provision of home help for older people.

  • 27.
    Olsen, Marie
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Dahlberg, Lena
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    McKee, Kevin
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Older people´s views on the core values of home care2015Conference paper (Other academic)
    Abstract [en]

    The care of older people and the underpinning values of care of older people in a recent government report on dignity in care. Care of older people should be based on six aspects of dignity which is the foundation for a dignified life. These are: integrity, such as privacy and bodily integrity; Self-determination; involvement in decisions about their care; individualized care; good health and social care; and a good interaction to the older person and their families.

    Despite a strong policy agenda on individually adapted care and values, social care research has usually not been undertaken from the perspective of the older care-receiver themselves. Even less is known about preferences of older care receivers with dementia, despite that they compose approximately 34 percent of older care receivers who have support from home help.

    Such pronouncements raise a question regarding the extent to which proposed ‘core values’ of social care are based on the actual values of the users, that is, the older care receivers.

    The study will be undertaken by means of a qualitative cross-sectional study, with semi-structured interviews.

     The population will include two groups: older care receivers (65 years or older) with or without dementia. The sample size is estimated to approximately 20-30 participants in each group.

    The interviews will be analyzed with content analysis. 

    This study will provide an increased understanding of older care receivers’ preferences and create conditions for a more individualized and person-centered care. This study will also contribute to strengthening the evidence-based practice in social care.

     

  • 28.
    Olsen, Marie
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    McKee, Kevin
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Dahlberg, Lena
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Understanding older people’s experiences of home care through the capability approach2015Conference paper (Other academic)
    Abstract [en]

    The core concepts of CA

    In the theoretical framework of CA, well-being is constituted by a person’s unique way of functioning and capabilities. This means that a person's well-being is personal and involves freedom of choice which in turn means they have a number of options. Although many people may have the same resources, it is of importance to study how these resources are converted into how they function. Thus, wellbeing is about the person's freedom to achieve in general and the capabilities to function in particular (Sen, 1995).

    Strength of the capability approach

    The capability approach is a useful tool for matching objective evaluations with subjective metrics. Furthermore, although one’s individual abilities are in focus, contextual factors, and subjective perceptions and experiences, are taken into consideration.

    Critiques against the CA

    The capability approach has been criticized for being too individual-centered and not taking sufficient account to social structures in society. It is difficult to know what a person would choose to do if other options were available. Therefore, to operationalize abilities involves uncertainties.

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  • 29.
    Olsen, Marie
    et al.
    Dalarna University, School of Health and Welfare, Caring Science/Nursing. Karolinska Institute, Stockholm University.
    Udo, Camilla
    Dalarna University, School of Health and Welfare, Social Work. Center for Clinical Research, Dalarna; Ersta Sköndal Bräcke University College.
    Boström, Anne-Marie
    Karolinska Institute; Karolinska University Hospital; Stockholms Sjukhem, R&D Unit, Stockholm.
    Marmstål Hammar, Lena
    Malardalen University, Karolinska Institute.
    Important aspects in home care service: an interview study with persons with dementia2021In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 20, no 5, p. 1649-1663Article in journal (Refereed)
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  • 30.
    Olsen, Marie
    et al.
    Dalarna University, School of Health and Welfare, Caring Science/Nursing. Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Stockholm, Sweden.
    Udo, Camilla
    Dalarna University, School of Health and Welfare, Social Work. Center for Clinical Research Dalarna-Uppsala University, Falun, Sweden.
    Dahlberg, Lena
    Dalarna University, School of Health and Welfare, Social Work. Department of Neurobiology, Care Sciences and Society, Ageing Research Centre, Karolinska Institutet, Stockholm, Sweden.
    Boström, Anne-Marie
    Department of Neurobiology, Care Sciences and Society, Ageing Research Centre, Karolinska Institutet, Stockholm, Sweden; Theme Inflammation and Ageing, Karolinska University Hospital, Huddinge, Sweden; R&D Unit, Stockholms Sjukhem, Stockholm, Sweden.
    Older persons' views on important values in Swedish home care service: A semi-structured interview study2022In: Journal of Multidisciplinary Healthcare, ISSN 1178-2390, E-ISSN 1178-2390, Vol. 15, p. 967-977Article in journal (Refereed)
    Abstract [en]

    Introduction: Knowledge of older person’s experiences of important values in home care service can facilitate the development and delivery of high-quality services supporting their well-being, dignity and participation in the care provided. To date, few studies have explored older person’s values and experiences of home care services.

    Purpose: This study aimed to explore values that older person holds regarding home care services and their experiences of how these values manifest in home care service delivery.

    Participants and Methods: The study has a qualitative exploratory design. Semi-structured interviews were conducted with 16 older persons aged 74–90 who received home care service. Data were analysed using qualitative content analysis.

    Results: Two themes (each with sub-themes) of values relating to the experience of home care service from the perspective of the 16 older persons were identified: to be supported as an autonomous person and to be supported as a relational being. The participants experience that these two values were only partly manifested in the home care services they received. They also noted that their well-being was negatively affected when staff failed to implement these values. The fundamental values identified in study related to the older person feeling safe, being autonomous, maintaining control and independence, and having relationships. The values constitute help to guide practice from the perspective of older persons who receive home care services.

    Conclusion: The identified values are primarily interpersonal-level values. However, such values are also of importance for homecare service organisations when promoting delivery of person-centred care. Taking such a position implies adopting a relation-oriented rather than a task-oriented approach in providing home care services for older persons.

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  • 31.
    Petersson, Eva-Lisa
    et al.
    Sahlgrenska Akademin, Göteborgs universitet; Region Västra Götaland.
    Hange, Dominique
    Sahlgrenska Akademin, Göteborgs universitet; Region Västra Götaland.
    Udo, Camilla
    Dalarna University, School of Health and Welfare, Social Work. Center for Clinical Research Dalarna, Uppsala Universitet.
    Björkelund, Cecilia
    Sahlgrenska Akademin, Göteborgs universitet; Region Västra Götaland.
    Svenningsson, Irene
    Sahlgrenska Akademin, Göteborgs universitet; Region Västra Götaland.
    Long-term effect of a care manager on work ability for patients with depression - the PRIM-CARE RCT2022In: Work: A journal of Prevention, Assessment and rehabilitation, ISSN 1051-9815, E-ISSN 1875-9270, Vol. 72, no 2, p. 601-609Article in journal (Refereed)
    Abstract [en]

    Background:  Collaborative care with a care manager in primary care improves care.

    Objective:  To study whether care manager support leads to improved work ability, decreased job strain and reduced time of sick leave among primary care patients with depression.

    Methods:  A clinical effectiveness study of care managers for depression patients seeking care in primary care was conducted in a RCT 2014 -2016. Patients in the intervention group were assigned a care manager. In the 12-month follow-up, patients with employment (n = 269; intervention n = 142, control n = 127) were studied concerning work ability, job strain and sick leave.

    Results:  An association was shown between reduction of depressive symptoms and improved work ability for the entire group. At 12-month follow-up a statistically significant difference of reduction of depressive symptoms was seen between the groups (MADRS-S: intervention 10.8 vs control 13.1, p = 0.05) as well as increased quality of life (EQ-5D: intervention 0.77 vs control 0.70, p = 0.04). In the intervention group, a concordance was found between the patient's prediction of return to work and the actual return to work (91%for intervention and 68 %for control group, p = 0.047).

    Conclusions:  Compared to usual care, the care manager does not seem to further improve perception of work ability, job strain or perception of social support per se among the patients despite a long-term effect on depression symptoms. The lack of a long-term effect regarding these aspects may be due to the fact that care manager support was only provided during the first three months.

  • 32. Petersson, Eva-Lisa
    et al.
    Svenningsson, Irene
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Collaborative care och personcentrerad vård2020In: Vårdsamordnare vid psykisk ohälsa i primärvården: Forskning, organisation och implementering, Göteborg: Göteborgs universitet , 2020Chapter in book (Other academic)
  • 33. Petersson, Eva-Lisa
    et al.
    Svenningsson, Irene
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Wallin, Lars
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Implementeringsprocessen2020In: Vårdsamordnare vid psykisk ohälsa i primärvården: Forskning, organisation och implementering, Göteborg: Göteborgs universitet , 2020Chapter in book (Other academic)
  • 34.
    Randell, Eva
    et al.
    Dalarna University, School of Health and Welfare, Social Work.
    Udo, Camilla
    Dalarna University, School of Health and Welfare, Social Work. Center for Clinical Research (CKF), Dalarna; Ersta Sköndal Bräcke University College, Stockholm.
    Warne, Maria
    Mittuniversitetet.
    A sense of health and coherence in young schoolchildren in Sweden2021In: International Journal of Circumpolar Health, ISSN 1239-9736, E-ISSN 2242-3982, Vol. 80, no 1, article id 1893534Article in journal (Refereed)
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  • 35.
    Sandegärd, Madeleine
    et al.
    Region Örebro.
    Udo, Camilla
    Dalarna University, School of Health and Welfare, Social Work.
    Existentiella samtal inom hälso- och sjukvård: Kuratorers erfarenheter av samtal om döden2023In: Socialmedicinsk Tidskrift, ISSN 0037-833X, Vol. 100, no 1, p. 88-96Article in journal (Refereed)
  • 36.
    Schmöker, Annika
    et al.
    Dalarna University, School of Health and Welfare, Care Sciences. Uppsala University.
    Ericson, Jenny
    Dalarna University, School of Health and Welfare, Caring Science/Nursing. Center for Clinical Research Dalarna, Uppsala University; Department of Paediatrics, County of Dalarna, Falun.
    Flacking, Renée
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    Udo, Camilla
    Dalarna University, School of Health and Welfare, Social Work. Center for Clinical Research Dalarna, Uppsala University; Palliative Research Centre, Ersta Sköndal University College, Stockholm.
    Needs and Perceptions Relative to Emotional Support in Parents With Preterm Infants.2021In: Journal of Perinatal & Neonatal Nursing, ISSN 0893-2190, E-ISSN 1550-5073Article in journal (Refereed)
    Abstract [en]

    Objectives of this study were to explore parents' needs for emotional support and how such support could be best delivered during admittance to a neonatal unit. This study took place at 6 neonatal units in Sweden. Forty-two semistructured interviews were analyzed using qualitative content analysis: 26 individual telephone interviews with mothers of preterm infants 6 to 10 months after discharge and 16 face-to-face interviews with parents of preterm infants admitted to neonatal units. The main category to emerge was needs and preferences for emotional support, which consisted of 2 generic categories: emotional needs and preferences for potential support interventions. Emotional needs define the importance of comprehending the new situation, finding meaning, and managing the situation through resources. Preferences for potential support interventions identify possible ways to deliver emotional support in the form of parental PhD group, diary writing, professional counseling, and Internet support. The results highlight the importance of supporting parents' sense of coherence in their situation and parenthood by offering different interventions according to parent preferences. Parental groups could serve as a keystone for emotional support with the possibility to combine with other support mechanisms.

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  • 37.
    Schmöker, Annika
    et al.
    Dalarna University, School of Education, Health and Social Studies, Medical Science. Uppsala University.
    Flacking, Renée
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work. Center for Clinical Research Dalarna, Falun; The Department of Health Care Sciences, Ersta Sköndal University College, Stockholm.
    Ericson, Jenny
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Center for Clinical Research Dalarna, Falun; Department of Paediatrics, County of Dalarna, Falun.
    Experienced parental stress and potential predictors up until the preterm infant’s age of 12 months2019Conference paper (Refereed)
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  • 38.
    Schmöker, Annika
    et al.
    Dalarna University, School of Education, Health and Social Studies, Medical Science. Uppsala University.
    Flacking, Renée
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work. Center for Clinical Research Dalarna, Falun, Sweden / Ersta Sköndal University College.
    Eriksson, Mats
    Hellström-Westas, Lena
    Ericson, Jenny
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Center for Clinical Research Dalarna, Falun, Sweden / Department of Paediatrics, County of Dalarna, Falun, Sweden.
    Longitudinal cohort study reveals different patterns of stress in parents of preterm infants during the first year after birth.2020In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 109, p. 1778-1786Article in journal (Refereed)
    Abstract [en]

    AIM: To compare experiences of stress in mothers and fathers of preterm infants during the first year of life, assess changes in parental stress and explore potential predictors of parental stress.

    METHODS: Between 2013 and 2015, data on parental stress were collected at 8 weeks after discharge and at 6 and 12 months postpartum from 493 mothers and 329 fathers of 547 preterm infants in Sweden. The Swedish Parenting Stress Questionnaire was used as a secondary outcome in a randomised clinical trial of breastfeeding support.

    RESULTS: At the three time points, mothers perceived more role restriction and fathers more social isolation (p<0.001). Stress decreased in mothers during the first year (p=0.018), whereas stress increased in fathers between 6 and 12 months (p=0.048). Mothers of very preterm infants (p=0.024), parents of twins (p=0.038) and parents with lower perceived general health (p=0.003) reported higher levels of stress during the first year after birth.

    CONCLUSION: This study identified several factors that influenced parental stress. Mothers and fathers showed different patterns of stress levels during the first year after birth. This finding indicates different needs for mothers and fathers regarding the time at which parental support after discharge might be most beneficial.

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  • 39.
    Sernbo, Elisabet
    et al.
    Göteborgs universitet.
    Udo, Camilla
    Dalarna University, School of Health and Welfare, Social Work.
    Flink, Maria
    Socialt arbete i hälso- och sjukvård i Sverige – en analys av avhandlingar skrivna av socionomer under åren 2008–20192021In: Socionomens forskningssupplement, ISSN 0283-1929, no 1, p. 18-29Article in journal (Other academic)
  • 40. Svenningsson, I
    et al.
    Petersson, E-L
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Westman, J
    Björkelund, C
    Wallin, Lars
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Center for Clinical Research; Karolinska institutet, Göteborgs universitet.
    Process evaluation of a cluster randomised intervention in Swedish primary care: using care managers in collaborative care to improve care quality for patients with depression.2019In: BMC Family Practice, E-ISSN 1471-2296, Vol. 20, no 1, article id 108Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The collaborative care model with a care manager has previously generated beneficial results for patients with depression in terms of decreased burden of depression symptoms. A care manager function has been tested in Sweden in the PRIM-CARE RCT with successful results. The aim of the present study was to evaluate the process of implementing care managers in collaborative care for patients with depression in Swedish primary health care in the PRIM-CARE RCT.

    METHODS: The study followed UK Medical Research Council guidance for process evaluation. Field notes from the implementation of the PRIM - CARE RCT were used, as well as data collected from five focus group discussions with General Practitioners (n = 29) and three focus group discussions with care managers (n = 11). Data were analysed with content analysis.

    RESULTS: Training sessions, careful preparation and extensive initial support to the care manager and staff at the Primary Care Centres were important ingredients in the implementation. The close access to facilitators, the recurrent peer support meetings, and the weekly newsletter strengthened the care manager function.

    CONCLUSIONS: A complex intervention adapted to the Swedish primary care context focusing on a care manager function for patients with depression could be performed through a stepwise implementation process. Financial support from the health care regions included in the study helped to reduce the impact of identified barriers. This process evaluation has revealed new and important knowledge for primary care development concerning infrastructure and organization building, knowledge sharing, and facilitating factors and barriers.

    TRIAL REGISTRATION: NCT02378272 Care Manager - Coordinating Care for Person Centered Management of Depression in Primary Care (PRIM - CARE). Registered March 4 2015. Retrospectively registered.

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  • 41.
    Svenningsson, Irene
    et al.
    Sahlgrenska Akademin, Göteborgs universitet.
    Hange, Dominique
    Sahlgrenska Akademin, Göteborgs universitet.
    Udo, Camilla
    Dalarna University, School of Health and Welfare, Social Work. Center for Clinical Research, Dalarna.
    Törnbom, Karin
    Sahlgrenska Akademin, Göteborgs universitet.
    Björkelund, Cecilia
    Sahlgrenska Akademin, Göteborgs universitet.
    Petersson, Eva-Lisa
    Sahlgrenska Akademin, Göteborgs universitet.
    The Care Manager meeting the patients’ unique needs using the care manager model - A qualitative study of experienced care managers2021In: BMC Primary Care, ISSN 2731-4553, Vol. 22, no 1, article id 175Article in journal (Refereed)
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  • 42. Svenningsson, Irene
    et al.
    Petersson, Eva-Lisa
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Vårdsamordnarfunktionen i praktiken2020In: Vårdsamordnare vid psykisk ohälsa i primärvården: Forskning, organisation och implementering, Göteborg: Göteborgs universitet , 2020Chapter in book (Other academic)
  • 43.
    Svenningsson, Irene
    et al.
    Sahlgrenska Akademin, Göteborgs universitet.
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Westman, Jeanette
    Nejati, Shabnam
    Hange, Dominique
    Björkelund, Cecilia
    Petersson, Eva-Lisa
    Creating a safety net for patients with depression inprimary care: a qualitative study of care managers’ experiences2018In: Scandinavian Journal of Primary Health Care, ISSN 0281-3432, E-ISSN 1502-7724, Vol. 36, no 4, p. 355-362Article in journal (Refereed)
    Abstract [en]

    Objective: The aim of this study was to explore nurses’experiences and perceptions of working as care managers at primary care centers.

    Design: Qualitative, focus group study. Malterud’s method of systematic text condensation was used to analyse the data.

    Setting: Primary health care in the region of Västra Götaland and region of Dalarna in Sweden.

    Subjects: Eight nurses were trained during three days including treatment of depression and how to work as care managers. The training was followed by continuous support in the method.

    Main outcome measures: The nurses’s experiences and perceptions of working as care managers at primary care centers.

    Results: The care managers described their role as providing additional support to the already existing care at the primary care center, working in teams with a person-centered focus, where they were given the opportunity to follow, support, and constitute a safety net for patients with depression. Further, they perceived that the care manager increased continuity and accessibility to primary care for patients with depression. 

    Conclusion: The nurses perceived that working as care managers enabled them to follow and support patients with depression and to maintain close contact during the illness.  The care manager function helped to provide continuity in care which is a main task of primary health care. 

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  • 44.
    Udo, Camilla
    Dalarna University, School of Health and Social Studies, Social Work.
    Existential issues in surgical care: Nurses’ experiences and attitudes in caring for patients with cancer2012Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The overall aim of this thesis was to explore surgical nurses’ experiences of being confronted with patients’ existential issues when caring for patients with cancer, and to examine whether an educational intervention may support nurses in addressing existential needs when caring for patients with cancer. Previously recorded discussions from supervision sessions with eight healthcare professionals were analysed (I), written descriptions of critical incidents were collected from 10 nurses, and interviews with open questions were conducted (II). An educational intervention on existential issues was pilot tested and is presented in Studies III and IV. The intervention was the basis of a pilot study with the purpose of testing whether the whole design of the educational intervention, including measurements instruments, is appropriate. In Study III and IV interviews with 11 nurses were conducted and 42 nurses were included in the quantitative measurements of four questionnaires, which were distributed and collected. Data was analysed using qualitative secondary analysis (I), hermeneutical analysis (II), and mixed methods using qualitative content analysis and statistical analyses (III-IV). Results in all studies show that existential issues are part of caring at surgical wards. However, although the nurses were aware of them, they found it difficult to acknowledge these issues owing to for example insecurity (I-III), a strict medical focus (II) and/or lacking strategies (I-III) for communicating on these issues. Modest results from the pilot study are reported and suggest beneficial influences of a support in communication on existential issues (III). The results indicate that the educational intervention may enhance nurses’ understanding for the patient’s situation (IV), help them deal with own insecurity and powerlessness in communication (III), and increase the value of caring for severely ill and dying patients (III) in addition to reducing work-related stress (IV). An outcome of all the studies in this thesis was that surgical nurses consider it crucial to have time and opportunity to reflect on caring situations together with colleagues. In addition, descriptions in Studies III and IV show the value of relating reflection to a theory or philosophy in order for attitudes to be brought to awareness and for new strategies to be developed.

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  • 45.
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work. CKF, Centrum för Klinisk Forskning.
    The concept and relevance of existential issues in healthcare encounters2014Conference paper (Refereed)
    Abstract [en]

    Rationale: Existential issues are relevant, not only in healthcare research, but also in healthcare practice as patients express needs relating to emotional and/or existential aspects of the new and often unexpected life situation they find themselves in. In critical situations, such as being diagnosed with a life-threatening illness, where a previously envisioned future and one’s basic security come under threat, existential issues often arise. Therefore, as a threat to existence, medical problems also become existential problems involving suffering and issues of life and death. Healthcare professionals need to be prepared for this. Thus, there is a need for clarification of what existential issues might.

    Aim: To illuminate and clarify the concept of existential issues in relation to nursing research and nursing practice.

    Method: Literature was searched in philosophical literature, PubMed, Cinahl and Psycinfo.

    Results: The concept of existential has its origin in philosophy and is common for all humans regardless of culture or religion. Existential issues often concern meaning, death, existential isolation and freedom. Although healthcare professionals are often aware of what existential issues may be, they feel unsure to communicate with patients and their loved ones about existential issues.

    Conclusion: Although acting in the professional capacity, the healthcare encounter is still primarily a human encounter where existential issues must be acknowledged and handled in order to support the patient to find meaning and thus relieve suffering. Further education with reflective discussions for healthcare professionals on challenging and difficult caring situations is important to support a deeper understanding of existential issues and to facilitate integration between phronesis-based and episteme-based knowledge. This in turn seems to enable communication about existential issues in caring situations.

  • 46.
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    The concept and relevance of existential issues in nursing2014In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 18, no 4, p. 347-354Article in journal (Refereed)
    Abstract [en]

    Aim: The aim of this study was to illuminate and clarify the concept existential issues in relation to nursing research and nursing practice.

    Methods: This article is a theoretical analysis of existential issues in relation to nursing.

    Results: Existential issues are becoming more commonly discussed and investigated in nursing research. Thus, it is important to clarify the concept.

    Conclusions: A clarification of existential issues may contribute to health care quality by increasing awareness of what existential issues are and drawing attention to the importance of discussing and reflecting on these issues, since practitioners in a caring profession will most likely encounter them.

  • 47.
    Udo, Camilla
    et al.
    Dalarna University, School of Health and Social Studies, Social Work.
    Danielson, Ella
    Sahlgrenska Akademien, Göteborgs Universitet; Mittuniversitetet.
    Henoch, Ingela
    Sahlgrenska Akademien, Göteborgs Universitet.
    Melin-Johansson, Christina
    Mittuniversitetet.
    Surgical nurses’ work-related stress when caring for severely ill and dying patients after participating in an educational intervention on existential issues2013In: The 7th International Conference on Social Work in Health and Mental Health: Pathways to Client-Centered Care: Oral Presentation Abstracts, 2013Conference paper (Refereed)
    Abstract [en]

    The aim was to describe surgical nurses’ perceived work-related stress in care of severely ill and dying patients after participating in an educational intervention on existential issues supervised by a clinical social worker.

    The concurrent data collections in this mixed methods study consisted of repeated interviews and questionnaires distributed on four occasions.

    Directly after the educational intervention, the nurses described working under high time pressure. They described being hindered in caring because of discrepancies between their caring intentions and what was possible in the surgical care context. Six months later, the nurses described a change in decision making, and a shift in the caring to make it more in line with their own intentions and patients’ needs rather than the organizational structure. At the same time they reported decreased feelings of work-related stress, decreased stress associated with work-load and feeling less disappointed at work.

    Results indicate that it may be possible to influence nurses’ work-related stress through an educational intervention. Reflection on ways of caring for severely ill and dying patients, from an existential perspective, had contributed to nurses’ enhanced independent decision-making in caring. This in turn appears to have decreased their feelings of work-related stress and disappointment at work.

  • 48.
    Udo, Camilla
    et al.
    Mid Sweden University, Department of Health Sciences, Östersund, Sweden, Health Care Sciences Post Graduate School, Karolinska Institute, Stockholm, Sweden.
    Danielson, Ella
    Henoch, Ingela
    Melin-Johansson, Christina
    Surgical nurses' work-related stress when caring for severely ill and dying patients with cancer after participating in an educational intervention on existential issues2013In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 17, no 5Article in journal (Refereed)
    Abstract [en]

    Aim

    The aim of this study was to describe surgical nurses' perceived work-related stress in the care of severely ill and dying patients with cancer after participating in an educational intervention on existential issues.

    Methods and sample

    This article reports a mixed methods pilot study of an education programme consisting of lectures and supervised discussions conducted in 2009–2010 in three surgical wards in a county hospital in Sweden. The concurrent data collections consisted of repeated interviews with eleven nurses in an educational group, and questionnaires were distributed to 42 nurses on four occasions.

    Results

    Directly after the educational intervention, the nurses described working under high time pressure. They also described being hindered in caring because of discrepancies between their caring intentions and what was possible in the surgical care context. Six months later, the nurses described a change in decision making, and a shift in the caring to make it more in line with their own intentions and patients' needs rather than the organizational structure. They also reported decreased feelings of work-related stress, decreased stress associated with work-load and feeling less disappointed at work.

    Conclusions

    Results indicate that it may be possible to influence nurses' work-related stress through an educational intervention. According to nurses' descriptions, reflecting on their ways of caring for severely ill and dying patients, many of whom had cancer, from an existential perspective, had contributed to enhanced independent decision making in caring. This in turn appears to have decreased their feelings of work-related stress and disappointment at work.

  • 49.
    Udo, Camilla
    et al.
    Dalarna University, School of Education, Health and Social Studies, Social Work. Mittuniversitetet, Institutionen för hälsovetenskap; Karolinska institutet.
    Danielson, Ella
    Mittuniversitetet, Institutionen för hälsovetenskap.
    Melin Johansson, Christina
    Mittuniversitetet, Institutionen för hälsovetenskap.
    Existential Reflections among Nurses in Surgical Care2010In: Journal of Palliative Care, ISSN 0825-8597, Vol. 26, no 3, p. 228-229Article in journal (Refereed)
    Abstract [en]

    Objectives: To gain a deeper understanding of surgical nurses’ experiences of existential issues in cancer care.

    Methods: Written critical incidents were used to collect nurses’ descriptions and reflections of critical care situations involving existential issues. Individual face-to-face interviews were conducted as follow-up using semi-structured questions which were analysed with hermeneutical analysis.

    Preliminary results: The analysis showed that nurses in surgical care experience caring from different positions. Nurses either focus on the patient as a whole in the caring process or nurses focus more on medical information in the caring process. When focusing on the patient as a whole existential issues are considered to be a natural part of the caring process and nurses’ personal experiences help to enable encounters with the patients. When focusing more on the medical information in the caring process there was a transfer of responsibility to others, mainly the physicians.

    Preliminary conclusions: This study highlights that existential issues are indeed part of surgical cancer care derived from existential care situations. Nurses’ focus in the caring process differs. Nurses express different positions in caring and not all acknowledge patients’ existential issues as part of nurses’ responsibility. When lacking common strategies in the organization nurses derive existential caring strategies from personal experiences.

  • 50.
    Udo, Camilla
    et al.
    Department of Health Sciences, Mid Sweden University, Östersund, Sweden, and Health Care Sciences Post Graduate School at Karolinska Institute, Stockholm, Sweden.
    Danielson, Ella
    Mittuniversitetet, Inst. för Hälsovetenskap; Sahlgrenska Akademien, Götebrogs universitet.
    Melin-Johansson, Christina
    Mittuniversitetet, Inst. för Hälsovetenskap.
    Existential issues among nurses in surgical care - a hermeneutical study of critical incidents2013In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 69, no 3, p. 569-577Article in journal (Refereed)
    Abstract [en]

    Aims.

    To report a qualitative study conducted to gain a deeper understanding of surgical nurses’ experiences of existential care situations.

    Background.

    Existential issues are common for all humans irrespective of culture or religion and constitute man’s ultimate concerns of life. Nurses often lack the strategies to deal with patients’ existential issues even if they are aware of them.

    Design.

    This is a qualitative study where critical incidents were collected and analysed hermeneutically.

    Methods.

    During June 2010, ten surgical nurses presented 41 critical incidents, which were collected for the study. The nurses were first asked to describe existential care incidents in writing, including their own emotions, thoughts, and reactions. After 1–2 weeks, individual interviews were conducted with the same nurses, in which they reflected on their written incidents. A hermeneutic analysis was used.

    Findings.

    The majority of incidents concerned nurses’ experiences of caring for patients’ dying of cancer. In the analysis, three themes were identified, emphasizing the impact of integration between nurses’ personal self and professional role in existential care situations: inner dialogues for meaningful caring, searching for the right path in caring, and barriers in accompanying patients beyond medical care.

    Conclusion.

    Findings are interpreted and discussed in the framework of Buber’s philosophy of the relationships I-Thou and I-It, emphasizing nurses’ different relationships with patients during the process of caring. Some nurses integrate their personal self into caring whereas others do not. The most important finding and new knowledge are that some nurses felt insecure and were caught somewhere in between I-Thou and I-It.

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