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  • 1.
    Daniels, Karen
    et al.
    Health Systems Research Unit, South African Medical Research Council, Cape Town, Tygerberg WC, South Africa; Health Policy and Systems Division, School of Public Health and Family Medicine, University of Cape Town, Cape Town, South Africa.
    Forinder, Ulla
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete och psykologi, Socialt arbete.
    Clarke, Marina
    Centre for Health Professions Education, Stellenbosch University, Stellenbosch, South Africa.
    Snyman, Stefanus
    Centre for Health Professions Education, Stellenbosch University, Stellenbosch, South Africa.
    Ringsberg, Karin C.
    Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Preschool children’s healthy lifestyles: South African parents’ and preschool staff perceptions2016Inngår i: Health Education Journal, ISSN 0017-8969, E-ISSN 1748-8176, Vol. 75, nr 8, s. 897-910Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: The worldwide growth of non-communicable diseases requires important lifestyle adaptations. The earlier a healthy lifestyle is adopted, the better. Enabling a healthy lifestyle for children during the preschool years ideally involves the cooperation of parents and teachers. Health promotion with parents and teachers is most effective if it takes into consideration their views and opinions, as well as context. Objective: The aim of this study was to explore perceptions of health and healthy lifestyle from the perspective of preschool children’s parents, and the staff caring for children attending preschools in three diverse settings. Design: Qualitative in-depth study. Setting: Preschools in Western Cape Province, South Africa. Method: Data were collected through six focus group discussions and analysed using qualitative content analysis. Results: Parents and staff shared a holistic view of health, agreeing that children and their health were primarily the responsibility of the parents. Informants described their own health and that of children as affected by a variety of interconnected factors, including environmental, economic, social and individual influences. Conclusion: When tailoring a health-promoting education programme, it is important to consider the pre-existing knowledge the participants have and the context in which intervention will take place. There is also a need to structurally address social determinants of health that may be beyond the control of the individuals.

  • 2. Forinder, Ulla
    Barn med cancer – familj i kris1997Inngår i: Komplekst og varieret: en antologi om svensk-dansk psykosocial onkologi / [ed] Helle Ploug Hansen, Carol Tishelman, Lund: Studentlitteratur AB, 1997, 1Kapittel i bok, del av antologi (Annet vitenskapelig)
  • 3.
    Forinder, Ulla
    Stockholms universitet, Institutionen för socialt arbete - Socialhögskolan.
    Barn och ungdomar som anhöriga2007Inngår i: Psykosocial cancervård / [ed] Maria Carlsson, Lund: Studentlitteratur AB, 2007, 1, s. 151-172Kapittel i bok, del av antologi (Annet vitenskapelig)
  • 4.
    Forinder, Ulla
    Stockholms universitet, Institutionen för socialt arbete - Socialhögskolan.
    Barn som bevittnat familjevåld - utvärdering av en stödgruppsverksamhet2008Inngår i: Stödgrupper för barn och ungdomar / [ed] Ulla Forinder och Elisabeth Hagborg, Lund: Studentlitteratur AB, 2008, 1, s. 253-280Kapittel i bok, del av antologi (Annet vitenskapelig)
  • 5.
    Forinder, Ulla
    Ersta Sköndal University College; Department of Social Work, Huddinge University Hospital, Huddinge, Sweden.
    Bone marrow transplantation from a parental perspective2004Inngår i: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 8, nr 2, s. 134-148Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    The present study focuses on the parents of the first group of children in Sweden to receive a bone marrow transplant and survive. Its aim was to get in-depth knowledge of the parents' situation during this critical time. The result of 10 years of research (1988-98), the study deals with the situation to which the parents had to adapt and the strategies that they used to handle their situation within a long-term perspective. Two series of qualitative interviews with the parents of 20 children who had undergone bone marrow transplantation were carried out. A self-report questionnaire for coping was also used. The result shows that the child's illness and treatment played an important role in the parents' lives for many years. Those parents who managed to put reason before emotion rated their coping as better. A sense of participation was also a useful coping strategy.

  • 6.
    Forinder, Ulla
    Stockholms universitet.
    I skuggan av cancer: benmärgstransplantation hos barn ur ett föräldraperspektiv2000Doktoravhandling, monografi (Annet vitenskapelig)
  • 7.
    Forinder, Ulla
    Institutionen för socialt arbete, Stockholms universitet, Stockholm.
    Livssituation  och krisbearbetning hos föräldrar vars barn genomgått en benmärgstransplantation1996Licentiatavhandling, monografi (Annet vitenskapelig)
  • 8.
    Forinder, Ulla
    Institutionen för socialt arbete, Stockholms universitet, Stockholm.
    Människors berättelser om sorger, lidanden och kriser2008Inngår i: Narrativa metoder i socialt arbete / [ed] Sam Larsson, Yvonne Sjöblom och John Lilja, Lund: Studentlitteratur AB, 2008, 1, s. 337-360Kapittel i bok, del av antologi (Annet vitenskapelig)
  • 9.
    Forinder, Ulla
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete och psykologi, Socialt arbete. Stockholms universitet; Nordic School of Public Health, Västra Frölunda, Sverige.
    Socialt arbete med sjuka barn2014Inngår i: Socialt arbete i hälso- och sjukvård: villkor, innehåll och utmaningar / [ed] Ann Lalos, Björn Blom, Stefan Morén & Mariann Olsson, Stockholm: Natur och kultur, 2014, 1, s. 147-164Kapittel i bok, del av antologi (Annet vitenskapelig)
  • 10. Forinder, Ulla
    Stödgrupp för unga vuxna - ur ett anhörigperspektiv: ett vårdutvecklingsprojekt hos Cancerfonden 1999-2000 : slutrapport2001Rapport (Annet vitenskapelig)
    Abstract [sv]

    Rapporten beskriver ett projekt på Huddinge universitetssjukhus med syfte att skaffa kunskap om huruvida en gruppverksamhet är en lämplig stödform för unga anhöriga till cancerpatienter. Man anordnade en verksamhet med en grupp bestående av 5 ungdomar vars föräldrar var svårt och obotligt sjuka i cancer. Vid den åttonde och sista gruppträffen gjordes en utvärdering av gruppen. Samtliga inblandade var i stort sett mycket positiva. De deltagande ungdomarna tyckte att en gruppverksamhet fungerade mycket bra då det överskuggande behovet var att träffa andra som är i samma situation.

  • 11.
    Forinder, Ulla
    et al.
    Stockholms universitet, Institutionen för socialt arbete - Socialhögskolan.
    Claesson, Lovisa
    Szybek, Katharina
    Lindahl Norberg, Annika
    Exploring the Content of Post-Traumatic Stress Symptoms among Parents after Paediatric Stem Cell Transplant2015Inngår i: PLOS ONE, E-ISSN 1932-6203, Vol. 10, nr 5, artikkel-id e0126905Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    In the present study the aim was to explore the content in a trauma reported in a self-report questionnaire by parents of children with a life threatening illness. Semi-structured interviews were performed, with the aim to explore the specific cognitive and behavioral content of the trauma related symptoms reported by the individual informant. The transcripts of the interviews were analyzed with content analysis using a direct approach with a-priori categories according to the B and C categories of the DSM-IV diagnostic criteria for PTSD. The results give us the picture of a complex situation, where the self-report instrument PCL captured a spectrum of qualitatively different cognitions. The parents described traumatic thoughts and images relating not only to experiences in the past (i.e., truly post-traumatic), but also to current stressors and expected future events.

  • 12.
    Forinder, Ulla
    et al.
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete och kriminologi, Socialt arbete.
    Daniels, Karen
    South African Medical Research Council, South Africa; University of Cape Town.
    Clarke, Marina
    Stellenbosch University, South Africa.
    Ringsberg, Karin C
    University of Gothenburg.
    Health care professionals’ perceptions of health promotion with preschool children2016Inngår i: International Journal of Healthcare, ISSN 2377-7338, Vol. 2, nr 1, s. 128-138Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: The growing burden of non-communicable diseases (NCDs) all over the world calls for a change in peoples’ lifestyles. One way to prevent NCDs is to work with health promotion. The burden of communicable diseases (CDs), however, is still high and resources are limited. Studies suggest that promotion of health should start early in life and in cooperation between preschool teachers and parents. Also health care workers should be included in such work. The aim of the present study was to explore health care professionals’ experiences and their reflections on health promotion in relation to children’s health in two different Western Cape settings, South Africa.

    Methods: Data was collected in two focus group discussions (FGDs) with twelve health care professionals from health clinics situated in two different settings; one upper-middle income urban suburb and one peri-urban township. Data was analysed with latent content analysis.

    Results: The findings are presented in four categories and twelve subcategories. The focus group (FG) participants had a holistic view on health and they talked about children’s health from a health promotion perspective where they saw children’s health as affected by an interplay between family, societal and structural factors. Further they saw several possibilities and expressed ideas about how to work from a health promotion perspective. They had a positive attitude to working intersectorally and interdisciplinary and believed that they could contribute to such a work. However, the cooperation with doctors and social service must be improved in order to succeed.

    Conclusions: The organizers of the health care sector should see to that health professionals have the possibility to work according to health promotion principles. Also the health care workers themselves must engage more actively in the work by considering the attitudes of the staff, the parents and grandparents and develop cultural awareness and sensibility.

    Fulltekst (pdf)
    fulltext
  • 13.
    Forinder, Ulla
    et al.
    Stockholms universitet, Institutionen för socialt arbete - Socialhögskolan.
    Hagborg, Elisabeth
    Introduktion2008Inngår i: Stödgrupper för barn och ungdomar / [ed] Ulla Forinder och Elisabeth Hagborg, Lund: Studentlitteratur , 2008, 1, s. 20-58Kapittel i bok, del av antologi (Annet vitenskapelig)
  • 14.
    Forinder, Ulla
    et al.
    Socialhögskolan, Stockholms universitet, Stockholm.
    Hagborg, Elisabeth
    Stödgrupper för barn och ungdomar2008Collection/Antologi (Annet vitenskapelig)
  • 15. Forinder, Ulla
    et al.
    Lindahl Norberg, Annika
    Karolinska institutet, Inst. för kvinnors och barns hälsa.
    "Now we have to cope with the rest of our lives": Existential issues related to parenting a child surviving a brain tumour2010Inngår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 18, nr 5, s. 543-51Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    The findings underscore the importance of the social network, validating and supporting parents through this process. Moreover, in this social network the paediatric oncology and neurology care is a significant part.

  • 16.
    Forinder, Ulla
    et al.
    Socialhögskolan, Stockholms universitet.
    Lindahl Norberg, Annika
    Uppsala universitet, Psykosocial onkologi och stödjande vård.
    Posttraumatic growth and support among parents whose children have survived stem cell transplantation2014Inngår i: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 18, nr 4, s. 326-335Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    In the current study, we investigated the occurrence of posttraumatic growth (PTG) among parents whose children had had stem cell transplantation (SCT) and survived. Although SCT is well established, it remains stressful and dangerous, and SCT is only performed if there is no other choice of treatment to be considered. A questionnaire batteries including the Post-Traumatic Stress Disorder (PTSD) Check List-Civilian version and the Post-Traumatic Growth Inventory were sent out to a cross-sectional national sample of parents of children who had had SCT six months or more before the study. The response rate was 66% (n = 281). The data were analyzed in relation to parents' appraisal of the event, gender, and perceived social support. The results confirm that SCT in childhood is an event of extreme adversity for the parents. Indications of PTSD were found among an important minority of the parents. Nevertheless, a large proportion of the parents had experienced growth as a consequence of the child's illness. Appreciation of life and personal strength were the domains with the highest scores. Moreover, a higher level of PTG was correlated with a higher level of posttraumatic stress and with an experience of the trauma as more severe. In summary, the study indicates that PTG is a relevant concept for this group of parents.

  • 17.
    Forinder, Ulla
    et al.
    Department of Paediatrics, Karolinska Institutet, Karolinska University Hospital, Huddinge, Stockholm.
    Löf, C.
    Department of Paediatrics, Karolinska Institutet, Karolinska University Hospital, Huddinge, Stockholm.
    Winiarski, J.
    Department of Paediatrics, Karolinska Institutet, Karolinska University Hospital, Huddinge, Stockholm.
    Quality of life and health in children following allogeneic SCT2005Inngår i: Bone Marrow Transplantation, ISSN 0268-3369, E-ISSN 1476-5365, Vol. 36, nr 2, s. 171-176Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    A total of 52 children, age 9 or over and at least 3 years (median=8) beyond SCT for leukaemia (n=32) or nonmalignant diseases, participated in a single-centre study of health and quality of life (QoL). QoL and self-esteem were assessed with SCHQ-CF87, a generic multidimensional self-report instrument, and with 'I think I am'. As a group, the children had good QoL, but were below norm in the bodily pain (P<0.05), general health and self-esteem dimensions (P<0.01). Lansky or Karnofsky function levels were at a median of 90. Sense of coherence (SOC-13) was normal and correlated with SCHQ-CF87. Most children were subjectively and objectively in good health according to a self-assessment symptom inventory or by a medical record-based scoring of late effects, although pain was commonly reported. A total of 25% of the patients were rated as having moderate to severe late effects, without considering cataracts or infertility. Neither age at SCT, gender, malignant vs nonmalignant disease, nor stature influenced QoL significantly. Children with moderate to severe chronic graft-versus-host disease or cognitive deficits had lower QoL in some dimensions. No correlation was, however, found between the physician-rated total late effects score and overall QoL. Contrarily, QoL was clearly related to the degree of self-rated symptoms.

  • 18.
    Forinder, Ulla
    et al.
    Department of Paediatrics, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden.
    Löf, C.
    Department of Paediatrics, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden.
    Winiarski, J.
    Department of Paediatrics, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden.
    Quality of life following allogeneic stem cell transplantation, comparing parents' and children's perspective2006Inngår i: Pediatric Transplantation, ISSN 1397-3142, E-ISSN 1399-3046, Vol. 10, nr 4, s. 491-496Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    There is insufficient knowledge about the quality of life (QoL) among children after allogeneic stem cell transplantation (SCT). We recently reported an overall, good self-assessed QoL and health in 52 children who were three yr or more beyond SCT. The focus of this paper is the QoL as assessed by their parents, of whom 42 participated in the study. Using Swedish child health questionnaire (SCHQ)-PF50, parents rated their children's QoL lower on both the psychosocial (p<0.001) and physical summary scales (p<0.001) than the normative group of parents of children without chronic disease. Although essentially following each other, parent scores tended to be lower than children's own SCHQ-CF87 scores, particularly in the domains 'role socially due to physical limitations' (p<0.01) and 'self-esteem' (p<0.05). In the 'bodily pain' domain, patients' and parents' low scores agreed. The child's condition had a greater impact on parents' emotional situation than in the norm population (p<0.001). The severity of the child's physician-rated late effects (p<0.05) or of self-assessed subjective symptoms (p<0.01-0.05) was associated with a lower parental rating of the child's QoL. High Lansky or Karnofsky scores corresponded, respectively, to higher psychosocial (p<0.05) and physical (p<0.05) summary scores. It is concluded that as children, parents, and clinicians do not necessarily adopt similar views of a child's illness and of its impact on the child's life, clarity with regard to who is responsible for assessing the child's QoL is crucial when interpreting pediatric QoL studies.

  • 19.
    Forinder, Ulla
    et al.
    Stockholms universitet, Institutionen för socialt arbete - Socialhögskolan.
    Lööf, Catharina
    Livskvalitet och livssituation för unga vuxna som genomgått stamcellstransplantation som barn: En studie om livskvalitet och socioekonomisk situation efter cancer i barndomen2008Inngår i: Socionomens forskningssupplement, ISSN 0283-1929, Vol. 6, nr 24, s. 58-69Artikkel i tidsskrift (Fagfellevurdert)
  • 20.
    Forinder, Ulla
    et al.
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete och psykologi, Socialt arbete. Stockholms universitet; Nordic School of Public Health, Västra Frölunda, Sverige.
    Olsson, Marianne
    Sektionen för socialt arbete, Institutionen för neurobiologi, vårdvetenskap och samhälle, Karolinska institutet, Stockholm.
    Teorier och metoder i kuratorsarbetet2014Inngår i: Socialt arbete i hälso- och sjukvård: villkor, innehåll och utmaningar / [ed] Ann Lalos, Björn Blom, Stefan Morén & Mariann Olsson, Stockholm: Natur och kultur, 2014, 1, s. 32-49Kapittel i bok, del av antologi (Annet vitenskapelig)
  • 21.
    Forinder, Ulla
    et al.
    Stockholms universitet.
    Posse, Ebba
    A life on hold: adolescents' experiences of stem cell transplantation in a long-term perspective.2008Inngår i: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 12, nr 4, s. 301-13Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Stem cell transplantation is one of the treatment methods for cancer in children and adolescents which has resulted in a positive outcome. Unfortunately this method of treatment brings with it a number of late effects such as short stature, cognitive effects and infertility. However, a majority of children and adolescents experience a good quality of life. By examining their medical records this study has gained a deeper understanding of the situation for the minority of young people who describe themselves as suffering severe mental distress which they relate to their illness and treatment. The population comprised seven adolescents who sought psychotherapeutic support several years after treatment. They describe how they are affected by the feeling of being different, the loss of contact with friends and their dependence on parents. The study points to the need for long-term psychosocial support for children and adolescents who have undergone stem cell transplantation.

  • 22.
    Forinder, Ulla
    et al.
    Stockholms universitet, Institutionen för socialt arbete - Socialhögskolan.
    Posse, Ebba
    Winiarski, Jacek
    Long-term psychosocial support for families of children who have undergone allogeneic stem cell transplant2008Inngår i: Social work in health care, ISSN 0098-1389, E-ISSN 1541-034X, Vol. 47, nr 2, s. 157-73Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Stem cell transplant (SCT) in children has a continuing impact in the lives of the SCT recipients and their families. This realization has led to extended psychosocial support to these families. The aim of this study was to evaluate the extended psychosocial support. How many families accepted the proffered contact with the social worker and what kind of support did the families ask for? The data were collected from the patients' medical charts by the health care social worker. Content analysis was used as the research method. The study reveals a need for continued psychosocial support lasting many years after treatment. The need for support does not lessen with the passage of time, but the nature of the support changes.

  • 23.
    Gyllström Krekula, Linda
    et al.
    Social Work in Health Care, Karolinska University Hospital, Stockholm, Sweden; Department of Learning, Informatics, Management and Ethics (LIME), Karolinska Institutet, Stockholm, Sweden.
    Forinder, Ulla
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete och psykologi, Socialt arbete. Department of Neurobiology, Care Sciences and Society (NVS), Karolinska Institutet, Stockholm, Sweden.
    Tibell, Annika
    Program Management Office (PMO), New Karolinska, Karolinska University Hospital, Stockholm , Sweden; Department of Learning, Informatics, Managemen t and Ethics (LIME), Karolinska Institutet, Stockholm, Sweden.
    What do people agree to when stating willingness to donate?: On the medical interventions enabling organ donation after death2018Inngår i: PLOS ONE, E-ISSN 1932-6203, Vol. 13, nr 8, artikkel-id e0202544Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Purpose of the study

    The purpose of this study is to explore donor relatives’ experiences of the medical interventions enabling organ donation, as well as to examine the donor relatives’ attitudes towards donating their own organs, and whether or not their experiences have influenced their own inclination to donate.

    Methods

    The experiences of donor relatives were explored via in-depth interviews. The interviews covered every step from the deceased family member being struck by a severe bleeding in the brain till after the organ recovery, including the medical interventions enabling organ donation. The interviews were analysed through qualitative and quantitative content analysis.

    Results

    Brain death and organ donation proved to be hard to understand for many donor relatives. The prolonged interventions provided after death in order to enable organ donation misled some relatives to believe that their family member still was alive. In general, the understanding for what treatment aimed at saving the family member and what interventions aimed at maintaining organ viability was low. However, most donor relatives were either inspired to, or reinforced in their willingness to, donate their own organs after having experienced the loss of a family member who donated organs.

    Conclusions

    There is a need for greater transparency regarding the whole chain of events during the donation process. Yet, having experienced the donation process closely did not discourage the donor relatives from donating their own organs–but rather inspired a willingness to donate. This indicates an acceptance of the medical procedures necessary in order to enable organ donation after death.

  • 24.
    Hjelmstedt, Sofia
    et al.
    Karolinska institutet.
    Forinder, Ulla
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete och kriminologi, Socialt arbete.
    Lindahl Norberg, Annika
    Centre for Occupational and Environmental Medicine, Stockholm County Council.
    Hovén, Emma
    Karolinska institutet.
    A Balancing Act: Working and Caring for a Child with Cancer2021Inngår i: Journal of Child and Family Studies, ISSN 1062-1024, E-ISSN 1573-2843, Vol. 30, nr 8, s. 1881-1894Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Parenting a child with cancer creates numerous additional care demands that may lead to increased difficulties in balancing work and family responsibilities. Still, there is limited knowledge of how parents cope with both parenthood and paid work after a child’s cancer diagnosis. The aim of the study was to explore mothers’ and fathers’ experiences of balancing the dual roles of work and parenthood following a child’s cancer diagnosis. Nine focus groups with in total 32 parents of children with cancer in Sweden were conducted. The data was analysed using qualitative content analysis. Three categories were identified: Shifts in the importance of the parent role and the work role, Influence of context and conditions on the balance of roles, and Long-term unbalance of roles. Parents expressed an increased appreciation of time spent with family, but also emphasized the importance of work to counterbalance the sometimes overwhelming parenting demands. The pre-existing financial situation, work situation, and employer behaviour were important factors influencing the parents’ ability to balance work and family. Traditional gender roles influenced how couples divided responsibilities and reflected on their experiences. Mothers and fathers were also met with different expectations, which highlights the need for the healthcare to consider their communication with caregivers. Importantly, the parents expressed how the child’s illness affected their ability to balance work and family for a long time, while the understanding and support from others had steadily declined. Enabling parents to care for their ill child without sacrificing their own career is of utmost importance, and future research should focus on identifying which factors facilitate for parents to achieve a sustainable work-life balance.

    Fulltekst (pdf)
    fulltext
  • 25.
    Hjelmstedt, Sofia
    et al.
    Karolinska institutet.
    Forinder, Ulla
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete och kriminologi, Socialt arbete.
    Montgomery, Scott
    Örebro universitet; Karolinska institutet; University College London, UK.
    Lindahl Norberg, Annika
    Stockholm County Council; Karolinska institutet.
    Hovén, Emma
    Karolinska institutet.
    Facilitators and barriers to return to work and meet financial needs in parents of children with cancer2021Inngår i: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 68, nr 10, artikkel-id e29245Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: The aim of this study was to explore what facilitators and barriers parents of children with cancer identify for their ability to return to work and meet financial needs. Procedure: Nine focus groups (21 mothers; 11 fathers) were performed across Sweden in 2015 and 2019. A deductive content analysis approach was used. A preconstructed matrix consisting of 12 codes based on previous literature was used to organize the data. The codes were grouped into subcategories, which were abstracted to four generic categories. Results: Facilitators for a return to work were covered in the category “Flexibility and understanding from employers and social services,” and barriers in the category “Pressure to return without consideration of the consequences.” Facilitators to meeting financial needs were covered in the category “Available public, private, and employer support,” and barriers in the category “Lack of organized and efficient support from employers and social services.”. Conclusions: The identified barriers suggest that there is room for improvement in the provision of psychosocial support, which relates to a perceived lack of organized support regarding practical, financial, and occupational matters. The results show a need for a coordinated support system that includes major stakeholders, such as the health care, welfare agencies, and employers. Moreover, employers should consider how to implement more workplace flexibility and involvement of occupational health services. Importantly, to be able to return to work and achieve a sustainable financial situation, it is necessary for all stakeholders to recognize the long-term impact of parenting a child with cancer. 

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  • 26.
    Hovén, Emma
    et al.
    Department of Women’s and Children’s Health, Karolinska Institutet, Stockholm, Sweden; Department of Women’s and Children’s Health, Uppsala University, Uppsala, Sweden.
    Lindahl Norberg, Annika
    Department of Women’s and Children’s Health, Karolinska Institutet, Stockholm, Sweden; Centre for Occupational and Environmental Medicine, Stockholm County Council, Stockholm, Sweden.
    Toft, Teolinda
    Department of Women’s and Children’s Health, Uppsala University, Uppsala, Sweden.
    Forinder, Ulla
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete och kriminologi, Socialt arbete. Department of Social Work and Psychology, Faculty of Health and Occupational StudiesUniversity of Gävle, Gävle, Sweden.
    Siblings of children diagnosed with cancer: being faced with a moral dilemma2023Inngår i: Journal of Family Studies, ISSN 1322-9400, E-ISSN 1839-3543, Vol. 29, nr 3, s. 1043-1060Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    In this study, we explore how siblings of children diagnosed with cancer describe the implications of cancer experience in interaction with other young people. Seven focus groups were performed with 30 siblings, 14–23 years at the time of study. Data were analysed using inductive thematic analysis. We applied the theoretical framework of ecological system theory and sociological perspective of childhood. Two themes were identified: family relations and maintaining normality. Family relations covered experiences of loneliness, neglect and changed family relationships. Siblings described being faced with a moral dilemma, where, on the one hand, it was difficult to handle the clash of being aware of their parents’ struggle and the severity of the illness; and on the other hand, refraining from claiming attention and support, resulting in experiencing loneliness and unmet needs. Maintaining normality involved descriptions of a strive for ‘normality,’ where the brother’s/sister’s cancer didn’t dominate. The results show how a sister’s/brother’s cancer disrupts the family system and the relations between microsystems, including school and friends. Young siblings should be recognized as independent agents, who have rights to be listened to. The health care system should create possibilities for siblings to express their own needs and provide appropriate support.

    Fulltekst (pdf)
    fulltext
  • 27.
    Hultman, Lill
    et al.
    Division of Social Work, Department of Neurobiology, Care Sciences and Society (NVS), Karolinska Institutet, Stockholm, Sweden.
    Forinder, Ulla
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete och psykologi, Socialt arbete. Division of Social Work, Department of Neurobiology, Care Sciences and Society (NVS), Karolinska Institutet, Stockholm, Sweden; Research & Development, Education and Innovation, Function Area Social Work in Health, Karolinska University Hospital, Stockholm, Sweden.
    Fugl-Meyer, Kerstin
    Division of Social Work, Department of Neurobiology, Care Sciences and Society (NVS), Karolinska Institutet, Stockholm, Sweden; Research & Development, Education and Innovation, Function Area Social Work in Health, Karolinska University Hospital, Stockholm, Sweden.
    Pergert, Pernilla
    Childhood Cancer Research Unit, Department of Women’s and Children’s Health (KBH), Karolinska Institutet, Stockholm, Sweden; Pediatric Oncology and Hematology, Children’s and Women’s Health, Karolinska University Hospital, Stockholm, Sweden.
    Maintaining professional integrity: experiences of case workers performing the assessments that determine children’s access to personal assistance2018Inngår i: Disability & Society, ISSN 0968-7599, E-ISSN 1360-0508, Vol. 33, nr 6, s. 909-931Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    This qualitative study explores Swedish case workers experiences of decision making regarding disabled children's right to obtain assistance in their everyday life whereby they can live independently in the community. Data collection included seven focus-group interviews and 11 complementary individual interviews with case workers from different agencies responsible for decisions regardig access to personal assistance. Grounded theory methodology was used. Compromised professional integrity under shifting conditions emerged as a main concern and maintaing professional integrity was used as an approach to resolve it. The case workers are maintaining professional integrity by applying different strategies; struggling with division of responsibility, bureaucratizig, and justifying and protecting. The results indicate that present application of assessment criteria in combination with the utilization of precedent rulings has made it difficult for the case workers to make decisions that provide children access to assistance. Current practice raises questions about the case workers perspectives of professionalism.

  • 28. Hultman, Lill
    et al.
    Forinder, Ulla
    Stockholms universitet, Institutionen för socialt arbete - Socialhögskolan.
    Pergert, Pernilla
    Assisted normality - a grounded theory of adolescent's experiences of living with personal assistance2016Inngår i: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 38, nr 11, s. 1053-1062Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Purpose: The purpose of the study was to explore how adolescents with disabilities experience everyday life with personal assistants.

    Method: In this qualitative study, individual interviews were conducted at 35 occasions with 16 Swedish adolescents with disabilities, in the ages 16-21. Data were analyzed using grounded theory methodology.

    Results: The adolescents' main concern was to achieve normality, which is about doing rather than being normal. They try to resolve this by assisted normality utilizing personal assistance. Assisted normality can be obtained by the existing relationship, the cooperation between the assistant and the adolescent and the situational placement of the assistant. Normality is obstructed by physical, social and psychological barriers.

    Conclusion: This study is from the adolescents' perspective and has implications for understanding the value of having access to personal assistance in order to achieve assisted normality and enable social interaction in everyday life. Implications for Rehabilitation Access to personal assistance is important to enable social interaction in everyday life. A good and functional relationship is enabled through the existing relation, co-operation and situational placement of the assistant. If the assistant is not properly sensitized, young people risk turning into objects of care. Access to personal assistants cannot compensate for disabling barriers in the society as for example lack of acceptance.

  • 29.
    Hultman, Lill
    et al.
    Karolinska Institutet, Stockholm, Sweden.
    Forinder, Ulla
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete och kriminologi, Socialt arbete.
    Öhrvall, Ann-Marie
    Karolinska Institutet, Stockholm, Sweden.
    Pergert, Pernilla
    Karolinska Institutet, Stockholm, Sweden.
    Fugl-Meyer, Kerstin
    Karolinska Institutet, Stockholm, Sweden.
    Elusive Participation – Social Workers’ Experience of the Participation of Children with Disabilities in LSS Assessments2019Inngår i: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011, Vol. 21, nr 1, s. 38-48Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    The aim of this study was to gain a deeper understanding of Swedish social workers’ experience of disabled children’s participation, to discover in what ways their knowledge about impairment and disability, combined with legal literacy and local context influence children’s participation in formal meetings and decision making. Seven focus-group interviews were conducted with 35 municipal social workers from communities in different parts of Sweden. The phenomenological analysis resulted in the overarching theme of elusive participation, in which participation was described as difficult to grasp both in relation to what was supposed to be achieved and what it was meant to result in. Elusive participation entailed a discrepancy between policy and practice, norms and perception of normality, conflicting perspectives and needs, judgment of children’s abilities. These findings underline the importance of creating safe spaces in which social workers have the opportunity for critical reflections and shared discussions about social work practice.

  • 30.
    Hultman, Lill
    et al.
    Karolinska Institutet, Division of Social Work, Department of Neurobiology, Care Sciences and Society (NVS).
    Pergert, Pernilla
    Karolinska Institutet, Childhood Cancer Research Unit, Department of Women’s and Children’s Health (KBH).
    Forinder, Ulla
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete och psykologi, Socialt arbete. Karolinska Institutet, Division of Social Work, Department of Neurobiology, Care Sciences and Society (NVS).
    Reluctant participation -€“ the experiences of adolescents with disabilities of meetings with social workers regarding their right to receive personal assistance [Motvilligt deltagande–erfarenheter hos ungdomar med funktionshinder av möten med LSS-handläggare gällande deras rätt till personlig assistans]2017Inngår i: European Journal of Social Work, ISSN 1369-1457, E-ISSN 1468-2664, Vol. 20, nr 4, s. 509-521Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    The aim of this study was to improve understanding of the experiences of adolescents with disabilities concerning meetings that affect their possibility to receive personal assistance in Sweden. Qualitative inductive content analysis was used to describe their experiences. Overall adolescents were found to be reluctant to participate in meetings. Two main approaches could be discerned – taking part and taking part by proxy. The adolescents who took part in meetings tried to adapt their self-presentation to fit with the social workers’ requirements by presenting their worst self, giving requested information, using support and raising their voices. The adolescents who choose to participate by proxy were either being involved or not being involved. Being involved implied involvement before and/or after the meeting. The meaning of participants’ strategies was examined through a social constructivist lens. The results indicate that ‘performing disability’ during the meetings is a prerequisite for obtaining personal assistance. In its current form adolescents’ participation is reduced to tokenism and this raises questions about how to implement a child perspective.

  • 31.
    Lindahl Norberg, Annika
    et al.
    Childhood Cancer Research Unit, Department of Women's and Children's Health, Astrid Lindgren Children's Hospital, Karolinska Institutet, Stockholm.
    Forinder, Ulla
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete och psykologi, Socialt arbete. Childhood Cancer Research Unit, Department of Women's and Children's Health, Astrid Lindgren Children's Hospital, Karolinska Institutet, Stockholm, Sweden.
    Different Aspects of Psychological Ill Health in a National Sample of Swedish Parents after Successful Paediatric Stem Cell Transplantation2016Inngår i: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 63, nr 6, s. 1065-1069Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: Paediatric hematopoietic stem cell transplantation (HSCT) may have great psychological impact on parents during the intense treatment period as well as many years after a successful transplantation. Since different psychological disorders require different interventions, a differentiation of general distress into specific types of psychological ill health is essential. The aim of this descriptive study was to distinguish anxiety, depression, and burnout, and investigate occurrence and co-occurrence of these in a national Swedish sample of parents of children who had undergone HSCT and survived.

    PROCEDURE: Established self-report instruments (Hospital Anxiety and Depression Scale, posttraumatic stress checklist, and Shirom-Melamed Burnout Questionnaire) were used to assess parents' subjective suffering.

    INCLUSION CRITERIA: the child had to be alive; ≤18 years of age; >6 months since HSCT.

    RESULTS: Four hundred twenty-one eligible parents (220 mothers and 201 fathers) were identified, of whom 284 choose to participate (response rate 67%). In total, 134 parents (87 mothers, 47 fathers) reported clinically relevant levels of one or more of the assessed types of psychological ill health, representing 48% of the responding participants and 32% of the entire national population of parents of children who had undergone HSCT and survived. Anxiety and/or burnout were reported most frequently. A majority reported more than one type of psychological ill health. Depression only was rare.

    CONCLUSIONS: The findings underscore the importance of recognizing-in research as well as in clinical practice-that different types of psychological ill health may affect parents after successful HSCT. When parents present with psychological suffering, a referral for qualified assessment is warranted to obtain the proper treatment.

  • 32.
    Lindahl Norberg, Annika
    et al.
    Department of Women’s and Children’s Health, Childhood Cancer Research Unit, Karolinska Institutet, Stockholm, Sweden, 2 U-CARE/Psychosocial Oncology and Supportive Care, Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
    Mellgren, Karin
    Department of Pediatrics, Institution for Clinical Sciences, University of Gothenburg, Gothenburg, Sweden,.
    Winiarski, Jacek
    Department of Clinical Science, Intervention and Technology, Astrid Lindgren Children’s Hospital, Karolinska Institutet, Karolinska University Hospital Huddinge, Stockholm, Sweden.
    Forinder, Ulla
    Nordiska ministerrådet, Nordic School of Public Health NHV.
    Relationship between problems related to child late effects and parent burnout after pediatric hematopoietic stem cell transplantation2014Inngår i: Pediatric Transplantation, ISSN 1397-3142, E-ISSN 1399-3046, Vol. 18, nr 3, s. 302-309Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    A few studies have indicated that parents’ reactions to achild’s serious disease may entail long-term stress for the parents.However, further knowledge of its consequences is valuable. The aim ofthe study was to investigate the occurrence of burnout in a Swedishnational sample of parents of children who had undergone HSCT andsurvived. Burnout (Shirom–Melamed Burnout Questionnaire) andestimations of the child’s health status (Lansky/Karnofsky estimationsand study-specific questions) were self-reported by 159 mothers and 123fathers. In addition, physicians made estimations of the child’s healthstatus (Lansky/Karnofsky estimations). Nonparametric tests revealedthat burnout symptoms occurred more often among fathers of childrenwho had undergone transplantation within the last five yr compared tofathers of children with no history of serious disease (34.4% vs. 19.9%).Burnout among mothers and fathers was associated with the child’snumber and severity of health impairments up to five yr after the childunderwent HSCT (Spearman’s rho for mothers 0.26–0.36 and forfathers 0.36–0.61). In conclusion, chronic stress in parents after achild’s HSCT seems to abate eventually. However, parents should bemonitored and offered adequate support when needed. Moreover, thesituation of fathers in the often mother-dominated pediatric settingshould receive more attention in research as well as in the clinic.

  • 33.
    Lindahl Norberg, Annika
    et al.
    Karolinska institutet.
    Plato, Mario
    Forinder, Ulla
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete och kriminologi, Socialt arbete.
    Hållbart arbetsliv för nattarbetande sjuksköterskor och barnmorskor: Upplevelser av nattarbetets för- och nackdelar2021Rapport (Annet vitenskapelig)
    Abstract [sv]

    Det övergripande syftet med det här projektet var att bidra med kunskap som kan användas för attmöjliggöra att natt- och skiftarbete ska kunna kombineras med god hälsa, motivation och engagemang i en stabil personalstyrka i hälso- och sjukvården. Rapporten beskriver resultat baserade på29 intervjuer som gjordes med sjuksköterskor och barnmorskor i Region Stockholm under hösten2018 och våren 2019.

    Inte oväntat var möjligheten till återhämtning ett viktigt område, då nattarbete är nära sammankopplat med efterföljande trötthet. Resultaten pekar mot att individuella psykologiska, biologiskaoch sociala variationer kan påverka vad som är ett optimalt schema. Nattarbetets effekter på livetutanför arbetet var ett annat område där återhämtning hade stor betydelse.

    Men nattarbete handlar inte bara om trötthet och återhämtning. I sjuksköterskans och barnmorskans nattarbete fanns också vissa speciella arbetsorganisatoriska förhållanden. En av de viktigastepusselbitarna i nattarbetets karaktär är kravet på stor självständighet, som – om förutsättningarnaär de rätta – har möjlighet att öka arbetstillfredsställelsen och bidra till en berikad arbetssituation.Under sämre förutsättningar, ofta handlar det om begränsad bemanning, kan kravet på självständighet istället medföra stress och oro för patientsäkerheten och upplevelsen av att vara ensam omett alltför stort ansvar. En annan aspekt av nattarbetets organisation handlade om att det kan gemöjlighet till klinisk kompetensutveckling inom vård och omvårdnad. 

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  • 34.
    Lundberg, Tina
    et al.
    Department of Neurobiology, Care Sciences and Society/Division of Social Work, Karolinska Institutet, Huddinge, Sweden; Department of Health Care Sciences/Palliative Research Centre, Ersta Sköndal Bräcke University College, Stockholm, Sweden; Function Area in Social Work and Health, Karolinska University Hospital, Stockholm, Sweden.
    Forinder, Ulla
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete och psykologi, Socialt arbete. Department of Neurobiology, Care Sciences and Society/Division of Social Work, Karolinska Institutet, Huddinge, Sweden; Function Area in Social Work and Health, Karolinska University Hospital, Stockholm, Sweden.
    Olsson, Mariann
    Department of Neurobiology, Care Sciences and Society/Division of Social Work, Karolinska Institutet, Huddinge, Sweden; Function Area in Social Work and Health, Karolinska University Hospital, Stockholm, Sweden; Stockholms Sjukhem Foundation, Stockholm, Sweden.
    Fürst, Carl Johan
    Department of Neurobiology, Care Sciences and Society/Division of Social Work, Karolinska Institutet, Huddinge, Sweden; .
    Årestedt, Kristofer
    Faculty of Health and Life Science, Linnaeus University, Kalmar, Sweden; Department of Medical and Health Sciences, Linköping University, Linköping, Sweden; Kalmar County Council, Kalmar, Sweden.
    Alvariza, Anette
    Department of Health Care Sciences/Palliative Research Centre, Ersta Sköndal Bräcke University College, Stockholm, Sweden; Capio Palliative Care Unit, Dalen Hospital, Enskededalen, Stockholm, Sweden.
    Bereavement stressors and psychosocial well-being of young adults following the loss of a parent – A cross-sectional survey2018Inngår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 35, s. 33-38Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Purpose: The knowledge about young adults who have lost a parent to cancer is limited, and to reach a broader understanding about this group, this study used the Dual Process Model of Coping with Bereavement (Stroebe and Schut, 1999) as a theoretical framework. The purpose of this study was to describe loss- and restoration-oriented bereavement stressors and psychosocial wellbeing of young adults following the loss of a parent to cancer. Method: This survey used baseline data from a longitudinal study. Young adults, aged 16–28 years, who lost a parent to cancer more than two months earlier and agreed to participate in support groups held at three palliative care services in Sweden, responded to a comprehensive theory-based study-specific questionnaire. Results: Altogether, 77 young adults (64 women and 13 men) answered the questionnaire an average of five-to-eight months after the loss. Twenty percent (n = 15) had not been aware of their parent's impending death at all or only knew a few hours before the death, and 65% (n = 50) did not expect the death when it occurred. The young adults reported low self-esteem (n = 58, 76%), mild to severe anxiety (n = 55, 74%), mild to severe depression (n = 23, 31%) and low life satisfaction. Conclusion: Young adults reported overall poor psychosocial wellbeing following bereavement. The unexpectedness and unawareness of the parent's imminent death, i.e., loss-oriented bereavement stressors, might influence psychosocial wellbeing. Despite these reports, restoration-oriented stressors, such as support from family and friends, helped them to cope with the loss.

  • 35.
    Lundberg, Tina
    et al.
    Karolinska institutet; Ersta Sköndal Bräcke University College; Karolinska University Hospital..
    Forinder, Ulla
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete och kriminologi, Socialt arbete. Karolinska institutet.
    Olsson, Mariann
    Karolinska institutet.
    Fürst, Carl Johan
    Lunds universitet.
    Årestedt, Kristofer
    Linnéuniversitetet.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College.
    Poor psychosocial well-being in the first year-and-a-half after losing a parent to cancer – a longitudinal study among young adults participating in support groups2020Inngår i: Journal of Social Work in End-of-Life & Palliative Care, ISSN 1552-4256, Vol. 16, nr 4, s. 330-345Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    The purpose of this study was to investigate variations in psychosocial well-being over time among young adults who participated in a support group after the death of a parent from cancer. Fifty-five young adults, aged 16–28 years, completed questionnaires that measured self-esteem, anxiety, depression, and life satisfaction at three time-points during the first yearand-one-half after the loss. Results indicated overall poor psychosocial well-being with few increases in psychological health over the study period, despite access to support and social networks. However, these resources may help to prevent major impairments in the participants’ future lives.

    Fulltekst (pdf)
    fulltext
  • 36.
    Lundberg, Tina
    et al.
    Karolinska institutet; Ersta Sköndal Bräcke högskola.
    Årestedt, Kristofer
    Linnéuniversitetet.
    Forinder, Ulla
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete och kriminologi, Socialt arbete. Karolinska institutet.
    Olsson, Mariann
    Karolinska institutet; Stockholms Sjukhem Foundation.
    Fürst, Carl Johan
    Lundsuniversitet.
    Alvariza, Anette
    Ersta Sköndal Bräcke högskola; Dalen Sjukhus.
    Higher self-esteem associated with less symptoms of anxiety and depression among young adults after the loss of a parent to cancer - a longitudinal study2022Inngår i: Journal of Palliative Care, ISSN 0825-8597, Vol. 37, nr 2, s. 113-119Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Objective: The purpose of the study was to examine associations between self-esteem and symptoms of anxiety and depression among young adults who lost a parent to cancer. Methods: Older adolescents and young adults, aged 16 to 28 years, who had lost their parent to cancer and had accepted an invitation to join a support group, completed a questionnaire 5 to 8 months after the loss and a similar questionnaire about 10 months later (follow-up). Of a total of 77 young adults who participated in the study, 56 completed both questionnaires. Self-esteem was measured with the Rosenberg Self-Esteem Scale. Symptoms of anxiety and depression were measured with the Hospital Anxiety and Depression Scale. Univariate and multiple linear regression models were used to analyze the associations. Result: Self-esteem was significantly associated with symptoms of anxiety and depression at baseline and at follow-up. Conclusion: This study reveals that self-esteem is a valuable explanatory variable, and that it is associated with both symptoms of anxiety and depression in bereavement. This new knowledge could be used to guide future support to parentally bereaved young adults.

    Fulltekst (pdf)
    fulltext
  • 37.
    Lundberg, Tina
    et al.
    Department of Health Care Sciences/Palliative Research Centre, Marie Cederschiöld University, Stockholm, Sweden;Function Area in Social Work and Health, Karolinska University Hospital, Stockholm, Sweden.
    Årestedt, Kristofer
    Faculty of Health and Life Sciences, Linnaeus University, Kalmar, Sweden;Department of Research, Region Kalmar County, Kalmar, Sweden.
    Olsson, Mariann
    Function Area in Social Work and Health, Karolinska University Hospital, Stockholm, Sweden;Department of Neurobiology, Care Sciences and Society/Division of Family Medicine and Primary Care, Karolinska Institutet Huddinge, Stockholm, Sweden;Department of Research and Development/ Palliative Care, Stockholms Sjukhem, Stockholm, Sweden.
    Alvariza, Anette
    Department of Health Care Sciences/Palliative Research Centre, Marie Cederschiöld University, Stockholm, Sweden;Department of Research and Development/ Palliative Care, Stockholms Sjukhem, Stockholm, Sweden.
    Forinder, Ulla
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete och kriminologi, Socialt arbete.
    Posttraumatic growth after struggling with the loss of a parent in young adulthood2023Inngår i: Omega, ISSN 0030-2228, E-ISSN 1541-3764Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    This study aims to examine posttraumatic growth and its associations with parental bereavement among adolescents and young adults. Fifty-five young adults who had lost a parent to cancer at least 2 months earlier and were about to attend a support group at a palliative care service were recruited. Data was collected through questionnaires before support group participation, about 5–8 months after the loss and at a 6-month follow-up, about 14–18 months after the loss. The result shows that the young adults experienced posttraumatic growth, mostly in the domains Personal strength and Appreciation of life. Posttraumatic growth was associated with bereavement outcomes, especially life satisfaction, a feeling of meaning in future life and psychological health. The result is of value for health care professionals as it adds information about the importance of supporting constructive rumination to enhance the possibility to positive psychological change after a parent’s death.

  • 38.
    Lyrberg, Ann
    et al.
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete, kriminologi och folkhälsovetenskap, Socialt arbete.
    Jess, Kari
    Högskolan Dalarna.
    Forinder, Ulla
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete, kriminologi och folkhälsovetenskap, Socialt arbete.
    Barns upplevelser av en intervention i familjer där vuxna har ett problematiskt bruk av alkohol och droger2024Inngår i: Nordic Studies on Alcohol and Drugs, ISSN 1455-0725, E-ISSN 1458-6126Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Aim: To investigate children's experiences of the intervention Me and my Family. Me and my Family is an intervention, for families with parental substance use problems (SUP) provided by Swedish social services outpatient care, includes eight weekly sessions where family members communicate how the SUP affects the family. Method: Data consists of 17 qualitative interviews with children, 7 to 19 years old. The qualitative data were analysed using a thematic approach, initially inductively and then discussed by adding salutogenic perspective. Results: The results are presented in three themes. Regardless of the children's varying ages, the results indicate that participating in the intervention has helped the family break the taboo surrounding parental substance use and enabled the young participants to communicate with their family members differently. The intervention also contributed to stronger bonds between children and their parents.

  • 39. Löf, Catharina M.
    et al.
    Winiarski, Jacek
    Ljungman, Per
    Forinder, Ulla
    Stockholms universitet, Institutionen för socialt arbete - Socialhögskolan.
    The socioeconomic and psychosocial circumstances of adult long-term survivors of hematopoietic stem cell transplantation in childhood2011Inngår i: Pediatric Transplantation, ISSN 1397-3142, E-ISSN 1399-3046, Vol. 15, nr 7, s. 691-698Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Socioeconomic factors such as education, employment, financial circumstances, marital status, and psychological well-being were investigated in 51 Swedish adults (age 19-42) surviving for at least five yr following pediatric allogeneic SCT (age at SCT 1-16 yr) using items derived from a Living Condition Survey (ULF). Psychological well-being and cognitive faculties were measured by HAD and SWED-QUAL. Socioeconomic data and marital status were compared with a norm group matched for gender and age, derived from the Swedish national population registry. Most subjects function well and lead normal lives, and they are nevertheless more likely than the norm to encounter problems with establishing themselves on the labor market. The SCT group demonstrated a lower level of employment, and the likelihood of having a disability pension was higher than in the normal population. Younger subjects and women encountered most financial difficulties and a higher risk of poverty. Cognitive difficulties intercorrelated both with inferior financial circumstances and with higher levels of anxiety and depression. These results indicate the importance of recognizing and attempting to tackle the possible cumulative disadvantage of problems that affect the adult following SCT in childhood.

  • 40. Löf, C.M.
    et al.
    Forinder, Ulla
    Stockholms universitet, Institutionen för socialt arbete - Socialhögskolan.
    Winiarski, J.
    Risk factors for lower health-related QoL after allogeneic stem cell transplantation in children2007Inngår i: Pediatric Transplantation, ISSN 1397-3142, E-ISSN 1399-3046, Vol. 11, nr 2, s. 145-151Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    To explore risk factors affecting HrQoL, we analyzed data from patients (n = 51) at least three yr beyond SCT and their parents (n = 41), who responded to the SCHQ, to a subjective symptom inventory and to a sense of coherence instrument, in parallel with a physician-rated scoring of late effects. Children with leukemia rated a lower HrQoL than children with non-malignant disease only in subscale RE, limitations in role socially because of the emotional difficulties (p < 0.05) but had more severe late effects (p < 0.05). Parents of children with leukemia rated their children's HrQoL overall lower in both the psychosocial area and physical area (p < 0.01) and the child's condition also had a greater impact on parents' emotional situation (p < 0.05), compared with parents of children with non-malignant diagnosis. The psychosocial HrQoL was more affected in recipients of an unrelated than of a sibling graft, according to both child (p < 0.01) and parent (p < 0.05). In the multiple regression analysis, however, late effects remained the only independent factor, contributing to low parental psychosocial (p < 0.05) and physical (p < 0.001) HrQoL ratings, while leukemia, unrelated donor and TBI did not. To conclude, parent-reported HrQoL was lower in SCT patients with leukemia, mainly due to a higher impact of late effects in this group.

  • 41.
    Norberg, Annika Lindahl
    et al.
    Uppsala universitet, Klinisk psykologi i hälso- och sjukvård.
    Forinder, Ulla
    Co-morbidity of Psychological Reactions Among Parents After Paediatric Stem Cell Transplantation2014Inngår i: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, nr 3, s. 265-266Artikkel i tidsskrift (Fagfellevurdert)
  • 42.
    Oborn, Helena
    et al.
    Karolinska Institutet, Department Of Clinical Science, Technology And Intervention, Division Of Pediatrics, Stockholm, Sweden.
    Forinder, Ulla
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete och psykologi, Socialt arbete.
    Herthelius, Maria
    Karolinska Institutet, Department Of Clinical Science, Technology And Intervention, Division Of Pediatrics, Stockholm, Sweden.
    Health-related quality of life in children with chronic kidney disease, comparsions between parent and child reports2017Inngår i: Pediatric nephrology (Berlin, West), ISSN 0931-041X, E-ISSN 1432-198X, Vol. 32, nr 9, s. 1794-Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Introduction: We aimed to assess health related quality of life (HRQoL) in children with chronic kidney disease (CKD) or a kid-ney transplant (CKD-T) from the perspective of their parents (proxy ratings). Additionally, the parental life satisfaction was evaluated aswell as its possible associations with HRQoL of their children.

    Material and methods: Sixty parents to children with CKD stage 3–5 or CKD-T participated. HRQoL in children was assessed by parent proxy versions of the generic instruments Kidscreen-27 and Disabkids-37. Parents own life satisfaction was measured by self-reported LiSat-11 questionnaire.

    Results: In most areas parent proxy ratings were significantly lower thanratings by the children themselves. Female sex and older age were associated with lower HRQoL. Compared with proxy ratings by parents to children in the general population, proxy ratings of HRQoL in children with CKD and CKD-T were significantly lower in the domains Physical Well-being, Psychological Well-being, Social inclusion, Social exclusion, and in overall score. Compared with general population, parents in the study rated their own life satisfaction lower in the domains Life as a whole, Leisure and Contacts. Mothers’ life satisfaction were lower than  fathers’in domains Life as a whole and Leisure.

    Conclusions: The agreement between parent and child reports of HRQoL was generally poor. Parent ratings of HRQoL in children with CKD seemed to correlate with parents own life satisfaction. The differences between parent and child ratings should be considered in clinical practice.

  • 43.
    Olsson, Mariann
    et al.
    Karolinska institutet.
    Forinder, Ulla
    Karolinska institutet.
    Larsson, Kjerstin
    Uppsala universitet, Institutionen för folkhälso- och vårdvetenskap.
    Berggren, Sigrid
    Karolinska universitetssjukhuset.
    Klinga, Charlotte
    Karolinska institutet.
    Effects of a field program for social work students within a university hospital2008Inngår i: Effects of a field program for social work students within a university hospital, 2008Konferansepaper (Fagfellevurdert)
  • 44.
    Olsson, Mariann
    et al.
    Department of Neurobiology, Care Sciences and Society, Stockholms Sjukhem Foundation, Karolinska Institutet, Stockholm, Sweden; Palliative Research Centre, Ersta Sköndal University College, Stockholm, Sweden.
    Lundberg, Tina
    Department of Neurobiology, Care Sciences and Society, Stockholms Sjukhem Foundation, Karolinska Institutet, Stockholm, Sweden; Department of Social Work, Karolinska University Hospital, Stockholm, Sweden; Department of Clinical Sciences, Lund University, Lund, Sweden.
    Fürst, Carl Johan
    Institute of Health Care Sciences, University of Gothenburg Centre for Person-Centred Care, University of Gothenburg, Gothenburg, Sweden.
    Öhlén, Joakim
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Forinder, Ulla
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete och psykologi, Socialt arbete. Department of Clinical Sciences, Lund University, Lund, Sweden; Department of Neurobiology, Care Sciences and Society, Stockholms Sjukhem Foundation, Karolinska Institutet, Stockholm, Sweden.
    Psychosocial Well-Being of Young People Who Participated in a Support Group Following the Loss of a Parent to Cancer2017Inngår i: Journal of Social Work in End-of-Life and Palliative Care, ISSN 1552-4256, Vol. 13, nr 1, s. 44-60Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Despite the evidence of unmet support needs among young people who have lost a parent to cancer, only a few support group initiatives have been reported. This observational prospective study explored the psychosocial well-being of young people who participated in support groups at a Swedish specialist palliative care setting. On three occasions, 29 participants, aged 16–28 years, answered questionnaires covering characteristics of the participants, circumstances of the losses, psychosocial well-being of the young people, and their own assessment of the support groups. The support groups attracted mostly young women who were often unprepared for the loss. The living arrangements differed between younger and older participants; however, the loss-related variables did not differ. Significant positive changes were found regarding a sense of meaning in their future life and life satisfaction. The helpfulness of the group was assessed as high/very high and the group brought a valuable fellowship with others in a similar situation. Universality and beneficial interactions were reported and strengthened psychosocial well-being developed over time. This change, according to the young people themselves, may be attributed to the group support. The findings are useful for planning interventions to support young people in bereavement in order to enhance their psychosocial well-being.

  • 45. Riva, Roberto
    et al.
    Forinder, Ulla
    Stockholms universitet, Institutionen för socialt arbete - Socialhögskolan.
    Arvidson, Johan
    Mellgren, Karin
    Toporski, Jacek
    Winiarski, Jacek
    Lindahl Norberg, Annika
    Patterns of psychological responses in parents of children that underwent stem cell transplantation2014Inngår i: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, nr 11, s. 1307-1313Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Objective

    Hematopoietic stem cell transplantation (HSCT) is curative in several life-threatening pediatric diseases but may affect children and their families inducing depression, anxiety, burnout symptoms, and post-traumatic stress symptoms, as well as post-traumatic growth (PTG). The aim of this study was to investigate the co-occurrence of different aspects of such responses in parents of children that had undergone HSCT.

    Methods

    Questionnaires were completed by 260 parents (146 mothers and 114 fathers) 11-198 months after HSCT: the Hospital Anxiety and Depression Scale, the Shirom-Melamed Burnout Questionnaire, the post-traumatic stress disorders checklist, civilian version, and the PTG inventory. Additional variables were also investigated: perceived support, time elapsed since HSCT, job stress, partner-relationship satisfaction, trauma appraisal, and the child's health problems. A hierarchical cluster analysis and a k-means cluster analysis were used to identify patterns of psychological responses.

    Results

    Four clusters of parents with different psychological responses were identified. One cluster (n=40) significantly differed from the other groups and reported levels of depression, anxiety, burnout symptoms, and post-traumatic stress symptoms above the cut-off. In contrast, another cluster (n=66) reported higher levels of PTG than the other groups did. ConclusionsThis study shows a subgroup of parents maintaining high levels of several aspects of distress years after HSCT. Differences between clusters might be explained by differences in perceived support, the child's health problems, job stress, and partner-relationship satisfaction.

  • 46.
    Rooth, Hetty
    et al.
    School of Health, Care and Social Welfare, Mälardalen University, Västerås, Sweden.
    Forinder, Ulla
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete och psykologi, Socialt arbete.
    Piuva, Katarina
    Department of Social Work, Stockholm University, Stockholm, Sweden.
    Söderbäck, Maja
    School of Health, Care and Social Welfare, Mälardalen University, Västerås, Sweden.
    An Assessment of Two Parenting Training Manuals Used in Swedish Parenting Interventions2017Inngår i: Children & society, ISSN 0951-0605, E-ISSN 1099-0860, Vol. 31, nr 6, s. 510-522Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    In Sweden, all parents of children aged 0–18 years are entitled to attend free parenting courses as part of a national strategy presented by the Government in 2009. This broad parental support welfare strategy is expected to fulfil the intentions of the UN Convention on the Rights of the Child. In this study, two parenting training manuals were analysed: the Canadian Connect program, based on attachment theory, and the Swedish ABC program, based on social learning theory. The results indicate that the manuals use strategies that can both hinder and support children's rights, regardless of rhetoric of children's best interests.

  • 47.
    Rooth, Hetty
    et al.
    Mälardalens högskola, Akademin för hälsa, vård och välfärd.
    Forinder, Ulla
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete och kriminologi, Socialt arbete.
    Piuva, Katarina
    Stockholm University.
    Söderbäck, Maja
    Mälardalens högskola.
    Being a child in the family: Young children describe themselves and their parents2023Inngår i: Journal of Family Studies, ISSN 1322-9400, E-ISSN 1839-3543, Vol. 29, nr 1, s. 1-14Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    This study explores how children describe their experiences of family interaction with parents who had taken part in parenting training. 11 children between five and nine years participated in semi-structured interviews which were analysed using a qualitative content analysis method. The children described themselves as active participants in family life, identifying strategies that they used to safeguard their subjective selves on one hand and to enhance communication with their parents on the other. The analysis displayed three main approaches in everyday life: withholding thoughts and hiding, extending limits for personal agency, and putting trust in their parents to guide and protect them in their stride. While handling these processes the children showed a willingness to take part in democratic family decisions by compromises and compliance. Towards their parents they expressed understanding and forbearance with adult shortcomings such as absentmindedness. Their reasoning involved issues of integrity and relational closeness. Conclusively, the children balanced their own selves with an undemanding respect for parental care and adult competence. The study contributes to awareness of and respect for how children position themselves as relational agents in a generational order. The results suggest that future research should further explore children’s perspectives on family life in a parenting training context. Children’s views should be drawn on to inform future developments in parenting training.

    Fulltekst (pdf)
    fulltext
  • 48.
    Rooth, Hetty
    et al.
    School of Health, Care and Social Welfare, Mälardalen University, Västerås, Sweden.
    Forinder, Ulla
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete och psykologi, Socialt arbete.
    Söderbäck, Maja
    School of Health, Care and Social Welfare, Mälardalen University, Västerås, Sweden.
    Viitasara, Eija
    Department of Health Science, Mid Sweden University, Västerås, Sweden.
    Piuva, Katarina
    Department of Social Work, Stockholm University, Stockholm, Sweden.
    Trusted and doubted: Discourses of parenting training in two Swedish official inquiries, 1947 and 2008.2018Inngår i: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 46, nr 20_Suppl. 1, s. 59-65Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Aim: The aim of this study was to analyse discourses of parenting training in official inquires in Sweden that explicitly deal with the bringing up of children and parental education and how the representations of the problems and their solutions affect parental subject positions in the early welfare state and at the onset of the 21st century. Method: We carried out a discourse analysis of two public inquiries of 1947 and 2008, drawing on theories about governmentality and power regimes. Tools from political discourse analysis were used to investigate the objectives of political discourse practices. Results: Both inquiries referred to a context of change and new life demands as a problem. Concerning suggestions for solutions, there were discrepancies in parents’ estimated need of expert knowledge and in descriptions of parental capacity. In a discourse of trust and doubt, the parents in 1947 were positioned as trusted welfare partners and secure raisers of future generations, and in 2008, as doubted adults, feared to be faltering in their child-rearing tasks. Conclusions: The analysis revealed how governmental problem descriptions, reasoning about causes and suggestions of solutions influenced parents’ subject positions in a discourse of trust and doubt, and made way for governmental interventions with universal parenting training in the 21st century.

  • 49.
    Rooth, Hetty
    et al.
    Mälardalen University, Sweden.
    Piuva, Katarina
    Stockholm University, Sweden.
    Forinder, Ulla
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete och psykologi, Socialt arbete.
    Söderbäck, Maja
    Mälardalen University, Sweden.
    Competent parents with natural children: parent and child identities in manual-based parenting courses in Sweden2018Inngår i: Childhood, ISSN 0907-5682, E-ISSN 1461-7013, Vol. 25, nr 3, s. 369-384Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    This article analyses identity constructions in two manual-based universal parenting training programmes in Sweden, Connect (U) and All Children in Focus (ABC). The analysis was performed with discourse analysis of oral messages during parent training courses. The findings revealed that the parents’ subject positions altered between troubled and good while the children’s subject positions altered between ambiguous and natural in a confessional discourse of uncertainty and competence. Conclusively, pastoral power operated to support parental self-reflexivity and adult control in a process to improve parenting skills.

  • 50.
    Savela, Maria
    et al.
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för folkhälso- och idrottsvetenskap, Folkhälsovetenskap.
    Forinder, Ulla
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för socialt arbete och kriminologi, Socialt arbete.
    Trygghetscirkeln: En föräldrautbildning som stärker föräldraskap och välbefinnande2023Rapport (Annet vitenskapelig)
    Abstract [sv]

    Sedan 2009 är det en skyldighet i Sverige att erbjuda föräldraskapsstöd till alla föräldrar med barn under 18 år. Inom kommuner används olika föräldraskapsutbildningar och Gävle kommun och Svenska kyrkan Gävle församling används Trygghetscirkeln som utgår ifrån ett anknytningsteoretiskt perspektiv.

    Syftet med studien var att undersöka föräldrars erfarenheter och upplevelser av att delta i föräldraskapsstödsprogrammet Trygghetscirkeln. Vi ville också veta om föräldrarnas välbefinnande har påverkats av deltagandet. Nitton föräldrar, som deltagit i programmet intervjuades och datamaterialet analyserades med hjälp av kvalitativ innehållsanalys. I det här arbetet fick författarna också tillgång till Svenska kyrkans redan insamlade enkäter och som också analyserades.

    Resultatet visar att föräldrarna upplever att Trygghetscirkeln har givet dem de verktyg de behöver i sin vardag för att på ett bättre sätt bemöta och vårda sina barn. De beskriver minskat antal konflikter, reparerade relationer till sitt barn och hur de pratar med sina barn om dennes känslor och att de lättare kan se barnets behov och bemöta det. Genom att deras föräldraskap har stärkts har också en känsla av trygghet och ett lugn vuxit fram och man upplever en minskad stress Trygghetscirkeln har gett dem en kompetens som har ökat deras välbefinnande.

    En kostnadseffektiv föräldraskapsutbildning är den som både stärker föräldrar och främjar hälsan, vilket Trygghetscirkeln visar göra i den här studien.

    Fulltekst (pdf)
    fulltext
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