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  • 1.
    Björk, Maria
    et al.
    Jönköping University.
    Sundler J, Annelie
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    Hallstöm, Inger
    Lund university.
    Hammarlund, Kina
    Högskolan i Skövde.
    Like being covered in a wet and dark blanket - Parents' lived experiences of losing a child to cancer2016In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 25, p. 40-45Article in journal (Refereed)
    Abstract [en]

    Purpose: The aim of this study was to illuminate parents' lived experiences of losing a child to cancer. Method: Interviews and a narrative about parents' experiences of losing a child to cancer were gathered from six parents of children whom had participated in a longitudinal study across the child's illness trajectory. The analysis of the data was inspired by van Manen's hermeneutic phenomenological approach. Results: One essential theme emerged: Like being covered in a wet and dark blanket, as well as six related themes: Feeling conflicting emotions, Preparing for the moment of death, Continuing parenting after death, Recollecting and sharing memories, Working through the sorrow and New perspectives in life. Conclusion: There is a need for good palliative care. If not, there is a risk that the parent will perseverate and blame themselves for not being a good parent during the suffering child's last time in life. Meetings with the parents six months and two years after the child's death might facilitate healing through the grief process.

  • 2.
    Darcy, Laura
    et al.
    University of Borås, School of Health Science. University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    Björk, M
    Enkär, K
    Knutsson, Susanne
    University of Borås, School of Health Science.
    The process of striving for an ordinary, everyday life, in young children living with cancer, at six months and one year post diagnosis2014In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 18, no 6, p. 605-612Article in journal (Refereed)
    Abstract [en]

    Purpose Health care focus is shifting from solely looking at surviving cancer to elements of attention relating to living with it on a daily basis.The young child's experiences are crucial to providing evidence based care. The aim of this study was to explore the everyday life of young children as expressed by the child and parents at six months and one year post diagnosis. Methods Interviews were conducted with children and their parents connected to a paediatric oncology unit in Southern Sweden. A qualitative content analysis of interview data from two time points, six months and one year post diagnosis, was carried out. Results The process of living with cancer at six months and at one year post diagnosis revealed the child's striving for an ordinary, everyday life. Experiences over time of gaining control, making a normality of the illness and treatment and feeling lonely were described. Conclusion Nurses have a major role to play in the process of striving for a new normal in the world post-diagnosis, and provide essential roles by giving the young child information, making them participatory in their care and encouraging access to both parents and peers. Understanding this role and addressing these issues regularly can assist the young child in the transition to living with cancer. Longitudinal studies with young children are vital in capturing their experiences through the cancer trajectory and necessary to ensure quality care.

  • 3.
    Darcy, Laura
    et al.
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare. Faculty of Caring Science, Work Life and Social Welfare, University of Borås, Borås, Sweden.
    Enskär, Karin
    Högskolan i Jönköping, HHJ, Avd. för omvårdnad.
    Björk, Maria
    Högskolan i Jönköping, HHJ, Avd. för omvårdnad.
    Young children's experiences of living an everyday life with cancer – A three year interview study2018In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122Article in journal (Refereed)
    Abstract [en]

    Purpose

    The young child's experiences of living with cancer are crucial to providing evidence based care. This study explores and describes experiences of everyday life of young children with cancer, over a three year period from diagnosis.

    Method

    This is a longitudinal, inductive interview study with young children with cancer, and their parents. Interviews from shortly after diagnosis, six and 12 months after diagnosis have been reanalysed. Interviews with the same children and their parents from 18 to 36 months after diagnosis have been analysed for the first time in the present paper. A longitudinal temporal analysis at category level for five synchronic data sets forms the basis for the results.

    Results

    The child living with cancer over a three year period is described as a child apart, striving to live an everyday life. This description is built on three categories: I want to be a child like any other, I need security and control and I feel lonely and left out. Young children with cancer actively strive to understand their illness, participate in care and live an ordinary everyday life- but with ongoing feelings of social isolation and loneliness.

    Conclusions

    Young children with cancer need access to and ongoing contact with peers and preschool. A structured follow-up throughout the cancer trajectory and not just during active treatment, is necessary. A child-centred philosophy of care would guide the child towards attainment of health and wellbeing.

  • 4.
    Enskär, Karin
    et al.
    Jönköping University.
    Björk, Maria
    Jönköping University.
    Knutsson, Susanne
    Jönköping University.
    Granlund, Mats
    Jönköping University.
    Darcy, Laura
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    Huus, Karina
    Jönköping University.
    A Swedish perspective on nursing and psychosocial research in paediatric oncology: A literature review.2015In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 19, no 3, p. 310-7, article id S1462-3889(14)00176-8Article in journal (Refereed)
    Abstract [en]

    PURPOSE: A dramatic improvement in outcomes of survival rates of childhood cancer has been seen. Caring science research is central in providing skills and knowledge to the health care sector, but few overviews of the content of published research have been carried out. The aim of this review was to investigate the content and methodology of published studies in paediatric oncology relevant to caring science, and also to compare possible differences in content and method of the published studies from the nursing and psychosocial perspectives.

    METHOD: A systematic literature review was performed of 137 published articles on paediatric oncology relevant to caring science in Sweden.

    RESULTS: The results show that most of the studies were descriptive or comparative ones with a quantitative design. Most of them focused on parents (43%) or children (28%). Most of the studies investigated wellbeing (88%), using questionnaires (54%) or interviews (38%). Several different measurement instruments had been used. While the results were often clearly presented, the clinical implications were more diffuse. The most acknowledged research fund was the Swedish Childhood Foundation (75%).

    CONCLUSIONS: To reflect the children' perspectives in paediatric oncology require that future researchers take on the challenge of including children (even young ones) in research. The use of a limited number of agreed measurement instruments is desirable. The biggest challenge for the future is to make a shift from explorative to intervention studies. There is an urgent need to transform research results into clinical practice.

  • 5.
    Högberg, K
    et al.
    University of Borås, School of Health Science.
    Sandman, L
    University of Borås, School of Health Science.
    Nyström, M
    University of Borås, School of Health Science.
    Stockelberg, D
    Broström, A
    Prerequisites required for the provision and use of web-based communication for psychosocial support in haematologic care2013In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 17, no 5, p. 596-602Article in journal (Refereed)
    Abstract [en]

    Purpose: The purpose of this study was to describe the prerequisites required for the provision and use of web-based communication for psychosocial support within a haematology clinic, from a patient and family perspective. Method: A qualitative design using content analysis was used. A strategically selected sample of patients ( n ¼ 11) and family members ( n ¼ 6) were offered access to a web-based communication capability with a nurse. After four months, individual interviews were conducted with all participants, in order to identify necessary prerequisites. Results: Preferences and characteristics of the individual patient or family member are crucial as to whether web-based communication for support is perceived as useful. To feel comfortable with writing and to self-identify the need for support are fundamental in getting motivated to use web-based com- munication. An effective organization around psychosocial support in general is another prerequisite. Goals and responsibilities must be clearly de fi ned for patients and family members to understand their rights and enable the transformation of opportunities into practice. The use of web-based communi- cation must also be a convenient and naturally incorporated part of both individual and organizational use of the web in general. Conclusions: Prerequisites of taking into account caretakers ’ different preferences and needs, providing highly structured psychosocial support activities and providing a congruent range of web services, are necessary for successful provision and use of web-based communication for psychosocial support.

  • 6.
    Nilsson, Stefan R
    et al.
    [external].
    Finnström, Berit
    Kokinsky, Eva
    Enskär, Karin
    The use of Virtual Reality for needle-related procedural pain and distress in children and adolescents in a paediatric oncology unit2009In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 13, no 2, p. 102-109Article in journal (Refereed)
    Abstract [en]

    AIM: It is essential to minimize pain and distress during painful procedures in children. This study examined the effect of using non-immersive Virtual Reality (VR) during a needle-related procedure on reported pain or distress of children and adolescents in a paediatric oncology unit and surveyed their response to the use of VR-equipment during the procedure. METHOD: Twenty-one children and adolescents were included in an intervention group with non-immersive VR and another 21 children and adolescents in a control group where they underwent either venous punctures or subcutaneous venous port devices. Self-reported pain and distress, heart rate and observational pain scores were collected before, during and after the procedures. Semi-structured qualitative interviews were conducted in conjunction with the completed intervention. RESULTS: Self-reported and observed pain and distress scores were low and few significant differences of quantitative data between the groups were found. Two themes emerged in the analysis of the interviews; the VR game should correspond to the child and the medical procedure and children enjoyed the VR game and found that it did distract them during the procedure. CONCLUSION: The interviews showed that non-immersive VR is a positive experience for children undergoing a minor procedure such as venous puncture or a subcutaneous venous port access.

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