| 1. |
- af Winklerfelt Hammarberg, Sandra, et al.
(författare)
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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 trial
- 2022
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Ingår i: BMC Primary Care. - : Springer Nature. - 2731-4553. ; 23:1
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Tidskriftsartikel (refereegranskat)abstract
- Background In previous studies, we investigated the effects of a care manager intervention for patients with depression 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 was to compare the long-term effectiveness of care management and usual care for primary care patients with depression on depressive symptoms, remission, quality of life, self-efficacy, confidence in care, and quality of care 12 and 24 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 Vastra Gotaland and Dalarna, Sweden. Patients >= 18 years with newly diagnosed mild to moderate depression (n = 376: 192 intervention, 184 control) were included. Patients at intervention centers co-developed a structured depression care plan with a care manager. Via 6 to 8 telephone contacts over 12 weeks, the care manager followed up symptoms and treatment, encouraged behavioral activation, provided education, and communicated with the patient's general practitioner as needed. Patients at control centers received usual care. Adjusted mixed model repeated measure analysis was conducted on data gathered at 12 and 24 months on depressive symptoms and remission (MADRS-S); quality of life (EQ5D); and self-efficacy, confidence in care, and quality of care (study-specific questionnaire). Results The intervention group had less severe depressive symptoms than the control group at 12 (P = 0.02) but not 24 months (P = 0.83). They reported higher quality of life at 12 (P = 0.01) but not 24 months (P = 0.88). Differences in 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 the primary care center. Conclusions Patients with depression who had a care manager maintained their 6-month improvements in symptoms at the 12- and 24-month follow-ups. Without a care manager, recovery could take up to 24 months. Patients with care managers also had significantly more confidence in primary care and belief in future support than controls.
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| 2. |
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| 4. |
- Ayoub, Maria, 1990-, et al.
(författare)
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Promoting social engagement for young adults living in social isolation: Social workers and health care professionals' perceptions of success factors
- 2019
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- 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.
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| 5. |
- Ayoub, Maria, 1990-, et al.
(författare)
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The Family Talk Intervention in Pediatric Oncology : Potential Effects Reported by Parents
- 2024
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Ingår i: Children. - : MDPI. - 2227-9067. ; 11:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Childhood cancer impacts the family system and has psychosocial consequences for all family members. For the parents, the ill child, and the siblings to be able to adjust to this challenging situation, the whole family needs access to psychosocial support. However, only a few such family interventions in pediatric oncology have been evaluated. The aim of this study was to explore the potential effects of a family-centered intervention, the Family Talk Intervention (FTI), in pediatric oncology from the parents' perspectives. Methods: A concurrent mixed methods design was used for this study. Data were derived from a pilot study of 26 families recruited from one pediatric oncology center in Sweden. This study focused on questionnaire and interview data from 52 parents. Results: After participation in FTI, the parents felt more satisfied with the conversations within the family about the illness. FTI also contributed to strengthened family togetherness, including more open communication and improved family relations, as described by the parents. Parents further expressed that they felt more empowered in their parenting role following FTI. Conclusions: The findings regarding FTI's ability to improve family communication and family relations, thus strengthening family togetherness in families with childhood cancer, are promising. This provides motivation for a large-scale study of FTIs in pediatric oncology.
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| 6. |
- Björkelund, Cecilia, 1948, et al.
(författare)
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Clinical effectiveness of care managers in collaborative care for patients with depression in Swedish primary health care: a pragmatic cluster randomized controlled trial
- 2018
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Ingår i: Bmc Family Practice. - : Springer Science and Business Media LLC. - 1471-2296. ; 19:1
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 7. |
- Björkelund, Cecilia, 1948, et al.
(författare)
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[Effects of a care manager organization for care of people with mild-moderate depression in Swedish primary care]. : Vårdsamordnare för depression – effektivt grepp i primärvården - Gav friskare patienter och hälsoekonomiska vinster.
- 2019
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Ingår i: Lakartidningen. - 1652-7518. ; 116
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- By strengthening accessibility and continuity and support via a care manager for primary care patients with depression corresponding to 20-30% of a nursing service, patients recovered significantly faster and to a greater extent than in primary care-as-usual. Return to work occurred significantly earlier in the first three months, and net sick leave period was significantly shorter during the following 4-6 months. To introduce a collaborative care organizational change where the care manager is the hub and coordinates care for the patient and makes it possible to adapt the care according to the patient's needs throughout the care process, is thus the individual effort shown to have the greatest efficiency in Swedish primary care to increase the quality of care of depression. This approach, where the clinic and academy work closely and continuously in the development and evaluation phases, makes it possible to rapidly develop new ways of working where consideration is given to the complexity of primary care and the complexity of care needs and care efforts.
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| 8. |
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| 9. |
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| 11. |
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| 12. |
- Eilegård Wallin, Alexandra, 1975-, et al.
(författare)
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Cancer-bereaved siblings’ advice to peers : A nationwide follow-up survey
- 2020
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Ingår i: Death Studies. - : Informa UK Limited. - 0748-1187 .- 1091-7683. ; 44:9, s. 561-568
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 13. |
- Eklund, Rakel, 1986-, et al.
(författare)
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Talking about death when a parent with dependent children dies of cancer : A pilot study of the Family Talk Intervention in palliative care
- 2022
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Ingår i: Death Studies. - : Informa UK Limited. - 0748-1187 .- 1091-7683. ; 46:10, s. 2384-2394
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 14. |
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| 15. |
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| 16. |
- Ericson, Jenny, et al.
(författare)
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Mothers' experiences of a telephone-based breastfeeding support intervention after discharge from neonatal intensive care units - a mixed-method study
- 2017
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Ingår i: International Breastfeeding Journal. - : Springer Science and Business Media LLC. - 1746-4358. ; 12:1
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Tidskriftsartikel (refereegranskat)abstract
- 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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| 17. |
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| 18. |
- Hammarberg, Sandra af Winklerfelt, et al.
(författare)
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Care managers can be useful for patients with depression but their role must be clear : a qualitative study of GPs' experiences
- 2019
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Ingår i: Scandinavian Journal of Primary Health Care. - : TAYLOR & FRANCIS LTD. - 0281-3432 .- 1502-7724. ; 37:3, s. 273-282
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Tidskriftsartikel (refereegranskat)abstract
- 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 Vastra Gotaland 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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| 19. |
- Henoch, Ingela, 1956, et al.
(författare)
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The Swedish Version of the Frommelt Attitude Toward Care of the Dying Scale : Aspects of Validity and Factors Influencing Nurses' and Nursing Students' Attitudes.
- 2014
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Ingår i: Cancer Nursing. - : Lippincott Williams & Wilkins. - 0162-220X .- 1538-9804. ; 37:1, s. E1-E11
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Tidskriftsartikel (refereegranskat)abstract
- 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 α'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.
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| 20. |
- Henoch, Ingela, et al.
(författare)
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The Swedish version of the Frommelt Attitude Toward Care of the Dying Scale (FATCOD) : Aspects of validity and factors influencing nurses' and nursing students' attitudes
- 2014
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Ingår i: Cancer Nursing. - : Lippincott Williams & Wilkins. - 0162-220X .- 1538-9804. ; 37:1
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 21. |
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| 23. |
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| 24. |
- Landfeldt, Erik, et al.
(författare)
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Health-related quality of life of children with spinal muscular atrophy in Sweden : A prospective cohort study in the era of disease-modifying therapy
- 2023
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Ingår i: European journal of paediatric neurology. - : Elsevier. - 1090-3798 .- 1532-2130. ; 46, s. 67-73
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 25. |
- Lövgren, Malin, et al.
(författare)
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Family talk intervention in paediatric oncology : a pilot study protocol
- 2019
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Ingår i: BMJ Paediatrics Open. - : BMJ. - 2399-9772. ; 3:1
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Tidskriftsartikel (refereegranskat)abstract
- 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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| 26. |
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| 27. |
- Lövgren, Malin, et al.
(författare)
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Is the Family Talk Intervention feasible in pediatric oncology? An evaluation of a family-based psychosocial intervention
- 2022
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Konferensbidrag (refereegranskat)abstract
- 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.
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| 28. |
- Lövgren, Malin, 1980-, et al.
(författare)
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Much is left unspoken : Self-reports from families in pediatric oncology
- 2020
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Ingår i: Pediatric Blood & Cancer. - : Wiley. - 1545-5009 .- 1545-5017.
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Tidskriftsartikel (refereegranskat)abstract
- 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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| 29. |
- Lövgren, Malin, et al.
(författare)
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Telling the truth to dying children — end-of-life communication with families
- 2019
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Ingår i: Acta Paediatrica. - : Wiley. - 0803-5253 .- 1651-2227. ; 108:11, s. 2111-2112
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Tidskriftsartikel (refereegranskat)abstract
- 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).
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| 30. |
- Matérne, Marie, 1967-, et al.
(författare)
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Hälso- och sjukvårdskuratorns funktion i rehabilitering för personer med stroke
- 2022
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Ingår i: Socialmedicinsk Tidskrift. - : Socialmedicinsk tidskrift. - 0037-833X. ; 99:1, s. 76-86
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Tidskriftsartikel (refereegranskat)abstract
- Att stödja patienter i rehabilitering efter stroke är en viktig funktion för hälso- och sjukvårdskuratorn. I denna artikel analyseras hälso- och sjukvårdskuratorns funktion utifrån ett systemteoretiskt perspektiv med stöd av patienternas erfarenheter av resiliens och livskvalitet. Intervjuer med 19 personer med stroke sekundäranalyserades tematiskt och resulterade i fem områden av betydelse för hälso- och sjukvårdskuratorns funktion. De teman som framkom 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 sjukvårdskuratorn funktioner återfinns således systemteoretiskt på alla nivåer vilket innebär att de professionellt antar en helhetssyn med fokus på individen i relation till dennes situation och kontext.
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| 31. |
- Melin-Johansson, Christina, 1956-, et al.
(författare)
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A third of dying patients do not have end-of-life discussions with a physician : A nationwide registry study
- 2022
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press (CUP). - 1478-9515 .- 1478-9523. ; 20:3, s. 357-362
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Tidskriftsartikel (refereegranskat)abstract
- 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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| 32. |
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| 33. |
- Melin-Johansson, Christina, 1956-, et al.
(författare)
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Mening
- 2020. - 2
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Ingår i: Palliativ vård. - : Studentlitteratur AB. - 9789144131078 ; , s. 353-367
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 34. |
- Melin-Johansson, Christina, 1956-, et al.
(författare)
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Talk for life - conversations in palliative care : Establishing a Trusting Relation: Interdisciplinary Strategies
- 2023
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Ingår i: Palliative Medicine. - : Sage Publications. - 0269-2163 .- 1477-030X. ; 37:1 Supplement
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Tidskriftsartikel (refereegranskat)abstract
- Background/aims: In Sweden, palliative care, is an interdisciplinary approach including e.g. doctors, nurses, hospital social workers, physiotherapists and occupational therapists, having knowledge about the patient’s physical and medical status. Communication about existential issues as life and death, and meaning, contribute to relieve symptoms for patients and support their next-of-kin. Today, these conversations are not provided on equal terms to all patients in palliative care. Therefore, there is a need for deeper knowledge about healthcare professionals’ experiences of existential conversations with patients and their next-of-kin in palliative care, and investigate their main concerns to initiate and implement these conversations.Aim:To deepen the understanding of healthcare professionals’ communication strategies and main concerns in conversations with patients having palliative care needs and their next-of kin.Methods: Design: A qualitative approach using grounded theory method for data collection and analysis with a focus on communication processes in the participants’ natural settings. Seven focus group interviews with assistant and registered nurses, psysiotherapists and occupational therapists were conducted. The analysis is in progress and final results will presented at the conference.Results: Preliminary results: Professionals’ main concerns involved “Establishing a trusting relationship” which they solved by “Maintaining presence” despite challenges. These challenges affected how they handled their main concern and are represented in the categories “Talking about death” “Capturing wishes and needs” and “Guiding the patient and next-of-kin”.Conclusions: A theory based on the professional’s main concerns and challenges will be developed when all data have been analyzed.
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| 35. |
- Melin-Johansson, Titti, et al.
(författare)
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Mening
- 2020
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Ingår i: Palliativ vård. - Stockholm : Studentlitteratur AB. - 9789144131078
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Bokkapitel (refereegranskat)abstract
- 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
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| 36. |
- Olsen, Marie, 1967-, et al.
(författare)
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Important aspects in home care service: an interview study with persons with dementia
- 2021
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Ingår i: Dementia. - : SAGE Publications. - 1471-3012 .- 1741-2684. ; 20:5, s. 1649-1663
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Tidskriftsartikel (refereegranskat)abstract
- AbstractBackground and aim: Because of the policy of ‘ageing in place’ and a decreased number of beds at residential settings, more persons with dementia are staying in their ordinary homes with assistance from home care services. However, previous studies reveal more unmet needs and a lower quality of life in this group than in other groups. Because few qualitative studies are done where persons with dementia have the opportunity to tell their own stories and describe what they find important, this study aimed to interview persons with dementia and describe their views of important aspects when receiving home care service.Methods: The study has a qualitative approach and 14 persons with dementia participated in interviews. The interviews were analysed using qualitative content analysis.Results: The results revealed one overarching theme: The importance of being supported as a unique and capable human, in that the persons with dementia described that despite their dementia diagnoses it was important to be seen as a person with capabilities although in need of support. The theme was built up by three subthemes: Being seen as a person, being involved and informed; and being part of a relationship.Conclusions: Our study showed that persons with dementia are able to express, formulate and reflect on their needs and preferences about their daily care and what is important to them when receiving home care service. Therefore, their points of view should be considered when planning, providing and examining care, and they need to be involved in decision making about their care.
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| 37. |
- Olsen, Marie, et al.
(författare)
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Important aspects of home care service : An interview study of persons with dementia.
- 2021
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Ingår i: Dementia. - : SAGE Publications. - 1471-3012 .- 1741-2684. ; 20:5, s. 1649-1663
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND AND AIM: Because of the policy of 'ageing in place' and a decreasing number of beds in residential settings, more persons with dementia live at home with support from home care services. However, previous studies have revealed more unmet needs and a lower quality of life in this group than in other groups. Because few qualitative studies are performed in which persons with dementia have the opportunity to tell their own stories and describe what they find important, this study aimed to interview persons with dementia and describe their views on the important aspects of receiving home care service.METHODS: The study used a qualitative approach, and 14 persons with dementia participated in the interviews. The interviews were analysed using qualitative content analysis.FINDINGS: The findings revealed one overarching theme. The importance of being supported as a unique and capable human, that is the persons with dementia stated that despite their dementia diagnoses, it was important to be seen as a person with capabilities, although in need of support. This theme was built on three subthemes: being seen as a person, being informed and involved, and being part of a relationship.CONCLUSIONS: Our study showed that persons with dementia are able to express, formulate and reflect on their needs and preferences about their daily care as well as what is important to them when receiving home care service. Therefore, their point of view should be taken into consideration when planning, providing and evaluating care.
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| 38. |
- Olsen, Marie, 1967-, et al.
(författare)
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Older people’s views on the important values in home help provision: a Swedish study
- 2018
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Konferensbidrag (refereegranskat)abstract
- 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.
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| 39. |
- Olsen, Marie, 1967-, et al.
(författare)
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Older persons' views on important values in Swedish home care service : A semi-structured interview study
- 2022
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Ingår i: Journal of Multidisciplinary Healthcare. - : DOVE MEDICAL PRESS LTD. - 1178-2390. ; 15, s. 967-977
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Tidskriftsartikel (refereegranskat)abstract
- 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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| 40. |
- Olsen, Marie, 1967-, et al.
(författare)
-
Older people´s views on the core values of home care
- 2015
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- 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.
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| 41. |
- Olsen, Marie, 1967-, et al.
(författare)
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Understanding older people’s experiences of home care through the capability approach
- 2015
-
Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- The core concepts of CAIn 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 approachThe 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 CAThe 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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| 42. |
- Petersson, Eva-Lisa, et al.
(författare)
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Collaborative care och personcentrerad vård
- 2020
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Ingår i: Vårdsamordnare vid psykisk ohälsa i primärvården. - Göteborg : Göteborgs universitet. - 9789151960876
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 43. |
- Petersson, Eva-Lisa, et al.
(författare)
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Implementeringsprocessen
- 2020
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Ingår i: Vårdsamordnare vid psykisk ohälsa i primärvården. - Göteborg : Göteborgs universitet. - 9789151960876
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 44. |
- Petersson, Eva-Lisa, et al.
(författare)
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Long-term effect of a care manager on work ability for patients with depression - the PRIM-CARE RCT
- 2022
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Ingår i: Work. - : IOS Press. - 1051-9815 .- 1875-9270. ; 72:2, s. 601-609
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Tidskriftsartikel (refereegranskat)abstract
- 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 followup, 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.
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| 45. |
- Petersson, Eva-Lisa, et al.
(författare)
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Process evaluation of the CO-WORK-CARE model : Collaboration and a person-centred dialogue meeting for patients with common mental disorder in primary health care
- 2024
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Ingår i: Scandinavian Journal of Caring Sciences. - 0283-9318 .- 1471-6712.
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Tidskriftsartikel (refereegranskat)abstract
- Rationale: To ensure optimal patient care based on evidence, it is crucial to understand how to implement new methods in practice. However, intervention studies often overlook parts of the implementation process. A comprehensive process evaluation is necessary to understand why interventions succeed or fail in specific contexts and to integrate new knowledge into daily practice. This evaluation examines the full implementation of the Co-Work-Care model in Swedish primary healthcare to identify strengths and weaknesses. Aim: This study aimed to evaluate the process of implementing the CO-WORK-CARE model that focuses on close collaboration and the use of a person-centred dialogue meeting in primary healthcare for patients on sick leave due to common mental disorders. Method: The CO-WORK-CARE model emphasises collaboration among the GP, rehabilitation coordinator and care manager, along with person-centred dialogue meetings involving employers. Following UK Medical Research Council guidelines, we conducted a process evaluation. Data from previous studies were reanalysed. We also analysed field notes and meeting notes using Malterud's qualitative method. Results: The evaluation identified key facilitators for model implementation, including regular visits by facilitators and guidance from the research physician. Peer support meetings also bolstered implementation. However, challenges emerged due to conflicts with existing structures and limitations in person-centred dialogue meetings. Conclusion: Adapting the CO-WORK-CARE model to Swedish primary care is feasible and beneficial, with collaboration among the care manager, rehabilitation coordinator and GP and person-centred dialogue meetings. Thorough preparations, ongoing facilitator and peer support and integrated information enhanced implementation efficiency, despite challenges posed by existing structures.
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| 46. |
- Randell, Eva, et al.
(författare)
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A sense of health and coherence in young schoolchildren in Sweden
- 2021
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Ingår i: International Journal of Circumpolar Health. - : Taylor & Francis Group. - 1239-9736 .- 2242-3982. ; 80:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Little is known about how younger schoolchildren in a rural setting experience their sense of coherence (SOC), how they think and reason about health and what they perceive as important to achieve health goals. This study aimed to investigate children’s SOC and their health perceptions.Method: In this mixed-method study 94 children (8-12 years) from three rural schools answered several questionnaires: The Child-SOC (CSOC), Positive Health Scale (PHS) and Cantril’s ladder of life scale. Another 23 children (of 94) participated in four focus group interviews. Thematic analysis was used to identify themes from the interview transcripts.Results: High SOC was reported by 48% of the boys and 22% of the girls. However, no significant gender differences were found. Four themes were generated from the qualitative analysis: Understanding health, Managing health, Doing bodily health and Socialising health. Both younger and older children had a holistic view of health in which health was seen as an individual’s living habits in which social contacts mattered.Conclusion: In a rural context children need to adapt to activities that exist in their immediate environment. Thus, activities during school hours can be an important complement in health promotion.
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| 47. |
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| 48. |
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| 49. |
- Schmöker, Annika, et al.
(författare)
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Longitudinal cohort study reveals different patterns of stress in parents of preterm infants during the first year after birth
- 2020
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Ingår i: Acta Paediatrica. - : Wiley-Blackwell Publishing Inc.. - 0803-5253 .- 1651-2227. ; 109:9, s. 1778-1786
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Tidskriftsartikel (refereegranskat)abstract
- 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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| 50. |
- Schmöker, Annika, et al.
(författare)
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Needs and Perceptions Relative to Emotional Support in Parents With Preterm Infants.
- 2021
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Ingår i: Journal of Perinatal & Neonatal Nursing. - 0893-2190 .- 1550-5073.
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Tidskriftsartikel (refereegranskat)abstract
- 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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