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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
    University of Gävle, Faculty of Health and Occupational Studies, Department of Social Work and Psychology, Social work.
    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 perceptions2016In: Health Education Journal, ISSN 0017-8969, E-ISSN 1748-8176, Vol. 75, no 8, p. 897-910Article in journal (Refereed)
    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 kris1997In: Komplekst og varieret: en antologi om svensk-dansk psykosocial onkologi / [ed] Helle Ploug Hansen, Carol Tishelman, Lund: Studentlitteratur AB, 1997, 1Chapter in book (Other academic)
  • 3.
    Forinder, Ulla
    Stockholms universitet, Institutionen för socialt arbete - Socialhögskolan.
    Barn och ungdomar som anhöriga2007In: Psykosocial cancervård / [ed] Maria Carlsson, Lund: Studentlitteratur AB, 2007, 1, p. 151-172Chapter in book (Other academic)
  • 4.
    Forinder, Ulla
    Stockholms universitet, Institutionen för socialt arbete - Socialhögskolan.
    Barn som bevittnat familjevåld - utvärdering av en stödgruppsverksamhet2008In: Stödgrupper för barn och ungdomar / [ed] Ulla Forinder och Elisabeth Hagborg, Lund: Studentlitteratur AB, 2008, 1, p. 253-280Chapter in book (Other academic)
  • 5.
    Forinder, Ulla
    Ersta Sköndal University College; Department of Social Work, Huddinge University Hospital, Huddinge, Sweden.
    Bone marrow transplantation from a parental perspective2004In: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 8, no 2, p. 134-148Article in journal (Refereed)
    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 föräldraperspektiv2000Doctoral thesis, monograph (Other academic)
  • 7.
    Forinder, Ulla
    Institutionen för socialt arbete, Stockholms universitet, Stockholm.
    Livssituation  och krisbearbetning hos föräldrar vars barn genomgått en benmärgstransplantation1996Licentiate thesis, monograph (Other academic)
  • 8.
    Forinder, Ulla
    Institutionen för socialt arbete, Stockholms universitet, Stockholm.
    Människors berättelser om sorger, lidanden och kriser2008In: Narrativa metoder i socialt arbete / [ed] Sam Larsson, Yvonne Sjöblom och John Lilja, Lund: Studentlitteratur AB, 2008, 1, p. 337-360Chapter in book (Other academic)
  • 9.
    Forinder, Ulla
    University of Gävle, Faculty of Health and Occupational Studies, Department of Social Work and Psychology, Social work. Stockholms universitet; Nordic School of Public Health, Västra Frölunda, Sverige.
    Socialt arbete med sjuka barn2014In: 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, p. 147-164Chapter in book (Other academic)
  • 10. Forinder, Ulla
    Stödgrupp för unga vuxna - ur ett anhörigperspektiv: ett vårdutvecklingsprojekt hos Cancerfonden 1999-2000 : slutrapport2001Report (Other academic)
    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 Transplant2015In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 10, no 5, article id e0126905Article in journal (Refereed)
    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.
    Stockholms universitet, Institutionen för socialt arbete - Socialhögskolan.
    Hagborg, Elisabeth
    Introduktion2008In: Stödgrupper för barn och ungdomar / [ed] Ulla Forinder och Elisabeth Hagborg, Lund: Studentlitteratur , 2008, 1, p. 20-58Chapter in book (Other academic)
  • 13.
    Forinder, Ulla
    et al.
    Socialhögskolan, Stockholms universitet, Stockholm.
    Hagborg, Elisabeth
    Stödgrupper för barn och ungdomar2008Collection (editor) (Other academic)
  • 14. 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 tumour2010In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 18, no 5, p. 543-51Article in journal (Refereed)
    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.

  • 15.
    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 transplantation2014In: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 18, no 4, p. 326-335Article in journal (Refereed)
    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.

  • 16.
    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 SCT2005In: Bone Marrow Transplantation, ISSN 0268-3369, E-ISSN 1476-5365, Vol. 36, no 2, p. 171-176Article in journal (Refereed)
    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.

  • 17.
    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 perspective2006In: Pediatric Transplantation, ISSN 1397-3142, E-ISSN 1399-3046, Vol. 10, no 4, p. 491-496Article in journal (Refereed)
    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.

  • 18.
    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 barndomen2008In: Socionomens forskningssupplement, ISSN 0283-1929, Vol. 6, no 24, p. 58-69Article in journal (Refereed)
  • 19.
    Forinder, Ulla
    et al.
    University of Gävle, Faculty of Health and Occupational Studies, Department of Social Work and Psychology, Social work. 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 kuratorsarbetet2014In: 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, p. 32-49Chapter in book (Other academic)
  • 20.
    Forinder, Ulla
    et al.
    Stockholms universitet.
    Posse, Ebba
    A life on hold: adolescents' experiences of stem cell transplantation in a long-term perspective.2008In: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 12, no 4, p. 301-13Article in journal (Refereed)
    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.

  • 21.
    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 transplant2008In: Social work in health care, ISSN 0098-1389, E-ISSN 1541-034X, Vol. 47, no 2, p. 157-73Article in journal (Refereed)
    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.

  • 22.
    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
    University of Gävle, Faculty of Health and Occupational Studies, Department of Social Work and Psychology, Social work. 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 death2018In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 13, no 8, article id e0202544Article in journal (Refereed)
    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.

  • 23.
    Hultman, Lill
    et al.
    Division of Social Work, Department of Neurobiology, Care Sciences and Society (NVS), Karolinska Institutet, Stockholm, Sweden.
    Forinder, Ulla
    University of Gävle, Faculty of Health and Occupational Studies, Department of Social Work and Psychology, Social work. 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 assistance2018In: Disability & Society, ISSN 0968-7599, E-ISSN 1360-0508, Vol. 33, no 6, p. 909-931Article in journal (Refereed)
    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.

  • 24. 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 assistance2016In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 38, no 11, p. 1053-1062Article in journal (Refereed)
    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.

  • 25.
    Hultman, Lill
    et al.
    Karolinska Institutet, Stockholm, Sweden.
    Forinder, Ulla
    University of Gävle, Faculty of Health and Occupational Studies, Department of Social Work and Psychology, Social work.
    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 Assessments2019In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011, no 1, p. 38-48Article in journal (Refereed)
    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.

  • 26.
    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
    University of Gävle, Faculty of Health and Occupational Studies, Department of Social Work and Psychology, Social work. 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]2017In: European Journal of Social Work, ISSN 1369-1457, E-ISSN 1468-2664, Vol. 20, no 4, p. 509-521Article in journal (Refereed)
    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.

  • 27.
    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
    University of Gävle, Faculty of Health and Occupational Studies, Department of Social Work and Psychology, Social work. 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 Transplantation2016In: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 63, no 6, p. 1065-1069Article in journal (Refereed)
    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.

  • 28.
    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 transplantation2014In: Pediatric Transplantation, ISSN 1397-3142, E-ISSN 1399-3046, Vol. 18, no 3, p. 302-309Article in journal (Refereed)
    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.

  • 29.
    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
    University of Gävle, Faculty of Health and Occupational Studies, Department of Social Work and Psychology, Social work. 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 survey2018In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 35, p. 33-38Article in journal (Refereed)
    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.

  • 30. 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 childhood2011In: Pediatric Transplantation, ISSN 1397-3142, E-ISSN 1399-3046, Vol. 15, no 7, p. 691-698Article in journal (Refereed)
    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.

  • 31. 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 children2007In: Pediatric Transplantation, ISSN 1397-3142, E-ISSN 1399-3046, Vol. 11, no 2, p. 145-151Article in journal (Refereed)
    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.

  • 32.
    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 Transplantation2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 3, p. 265-266Article in journal (Refereed)
  • 33.
    Oborn, Helena
    et al.
    Karolinska Institutet, Department Of Clinical Science, Technology And Intervention, Division Of Pediatrics, Stockholm, Sweden.
    Forinder, Ulla
    University of Gävle, Faculty of Health and Occupational Studies, Department of Social Work and Psychology, Social work.
    Herthelius, Maria
    Karolinska Institutet, Department Of Clinical Science, Technology And Intervention, Division Of Pediatrics, Stockholm, Sweden.
    Health-related quality of life in children with cronic kidney deisease, comparsions between parent and child reports2017In: Pediatric nephrology (Berlin, West), ISSN 0931-041X, E-ISSN 1432-198X, Vol. 32, no 9, p. 1794-Article in journal (Refereed)
    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.

  • 34.
    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 hospital2008In: Effects of a field program for social work students within a university hospital, 2008Conference paper (Refereed)
  • 35.
    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
    University of Gävle, Faculty of Health and Occupational Studies, Department of Social Work and Psychology, Social work. 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 Cancer2017In: Journal of Social Work in End-of-Life and Palliative Care, ISSN 1552-4256, Vol. 13, no 1, p. 44-60Article in journal (Refereed)
    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.

  • 36. 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 transplantation2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 11, p. 1307-1313Article in journal (Refereed)
    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.

  • 37.
    Rooth, Hetty
    et al.
    School of Health, Care and Social Welfare, Mälardalen University, Västerås, Sweden.
    Forinder, Ulla
    University of Gävle, Faculty of Health and Occupational Studies, Department of Social Work and Psychology, Social work.
    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 Interventions2017In: Children & society, ISSN 0951-0605, E-ISSN 1099-0860, Vol. 31, no 6, p. 510-522Article in journal (Refereed)
    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.

  • 38.
    Rooth, Hetty
    et al.
    Mälardalens högskola, Akademin för hälsa, vård och välfärd.
    Forinder, Ulla
    University of Gävle, Faculty of Health and Occupational Studies, Department of Social Work and Psychology, Social work. Gävle University.
    Piuva, Katarina
    Stockholm University.
    Söderbäck, Maja
    Mälardalens högskola, Akademin för hälsa, vård och välfärd.
    Being a child in the family: Young children describe themselves and their parents who have participated in universal parenting trainingManuscript (preprint) (Other academic)
  • 39.
    Rooth, Hetty
    et al.
    School of Health, Care and Social Welfare, Mälardalen University, Västerås, Sweden.
    Forinder, Ulla
    University of Gävle, Faculty of Health and Occupational Studies, Department of Social Work and Psychology, Social work.
    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 2008.2018In: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 46, no 20_Suppl. 1, p. 59-65Article in journal (Refereed)
    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.

  • 40.
    Rooth, Hetty
    et al.
    Mälardalen University, Sweden.
    Piuva, Katarina
    Stockholm University, Sweden.
    Forinder, Ulla
    University of Gävle, Faculty of Health and Occupational Studies, Department of Social Work and Psychology, Social work.
    Söderbäck, Maja
    Mälardalen University, Sweden.
    Competent parents with natural children: parent and child identities in manual-based parenting courses in Sweden2018In: Childhood, ISSN 0907-5682, E-ISSN 1461-7013, Vol. 25, no 3, p. 369-384Article in journal (Refereed)
    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.

  • 41.
    Vogel, Gisela
    et al.
    Department of Clinical Science and Education, Karolinska Institutet, Unit of Anaesthesiology; Intensive Care, Södersjukhuset, Stockholm, Sweden.
    Forinder, Ulla
    University of Gävle, Faculty of Health and Occupational Studies, Department of Social Work and Psychology, Social work.
    Sandgren, A.
    Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Svensen, C.
    Department of Clinical Science and Education, Karolinska Institutet, Unit of Anaesthesiology; Intensive Care, Södersjukhuset, Stockholm, Sweden.
    Joelsson-Alm, Eva
    Department of Clinical Science and Education, Karolinska Institutet, Unit of Anaesthesiology; Intensive Care, Södersjukhuset, Stockholm, Sweden.
    Health-related quality of life after general surgical intensive care2018In: Acta Anaesthesiologica Scandinavica, ISSN 0001-5172, E-ISSN 1399-6576, Vol. 62, no 8, p. 1112-1119Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Impaired mental and physical health are common complications after intensive care that could influence the patient's health-related quality of life (HRQoL). Earlier research has mainly focused on HRQoL in mixed surgical and medical ICU populations. This study aimed to describe and analyze factors associated with HROoL after discharge from a general surgical ICU.

    METHODS: A prospective cohort study was conducted in a general surgical ICU in Sweden between 2005 and 2012. Adult patients (≥18 years) with an ICU length of stay ≥96 hours were included. HRQoL was measured at 3, 6, and 12 months after discharge from the ICU using a questionnaire (SF-36). A linear mixed model was used to analyze changes over time and Wilcoxon Signed Rank Tests were used to compare the 12-months results to an age and gender matched reference population in Sweden. Linear regression analyses were performed to explore the impact on HRQoL from background variables.

    RESULTS: Of 447 patients eligible for the study, 276 patients (62%) answered SF-36 at least once at 3, 6 or 12 months after ICU care and were included in the study. HRQoL improved over time but was still significantly lower at 12 months compared to the reference population. Female gender, age <75 years, living single, and ICU-stay of more than 14 days were associated with lower HRQoL.

    CONCLUSION: General surgical ICU patients reports low HRQoL 1 year after ICU stay. The impaired HRQoL could be a long-lasting problem with major consequences for the individual, family, and society.

  • 42.
    Öborn, Helena
    et al.
    Division of Pediatrics, Department of Clinical Science, Technology and Intervention, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden.
    Wettergren, Lena
    Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Stockholm, Sweden.
    Herthelius, Maria
    Division of Pediatrics, Department of Clinical Science, Technology and Intervention, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden.
    Forinder, Ulla
    University of Gävle, Faculty of Health and Occupational Studies, Department of Social Work and Psychology, Social work. Department of Neurobiology, Care Sciences and Society, Division of Social Work, Karolinska Institutet, Stockholm, Sweden.
    Associations between lower urinary tract dysfunction and health-related quality of life in children with chronic kidney disease2016In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 105, no 8, p. 959-966Article in journal (Refereed)
    Abstract [en]

    Aim Little is known about the health-related quality of life (HRQoL) of children with lower urinary tract dysfunction (LUTD) and chronic kidney disease (CKD). We investigated LUTD and other possible predictors of impaired HRQoL in children with conservatively treated moderate to severe CKD or with a kidney transplant.

    Methods All 64 children with CKD or a kidney transplant treated at Karolinska University Hospital, Stockholm, Sweden, between June 2011 and December 2012 were approached and 59 children aged 8-18 were enrolled in the study. Lower urinary tract function was evaluated with voiding history, frequency and volume chart, uroflowmetry and post void ultrasound measurements. Self-reported HRQoL was assessed with validated generic instruments.

    Results The HRQoL of the study cohort was as good as the general paediatric population, apart from the physical and psychological well-being dimensions, and was no different to children with other chronic conditions. Urinary incontinence, but not LUTD in general, was associated with impaired HRQoL, as was having a kidney transplant and being female in some dimensions.

    Conclusion LUTD was common in children with CKD or a kidney transplant but did not affect their general HRQoL. Predictors of impaired HRQoL included incontinence, having had a kidney transplant and being female.

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