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- Hovén, Emma, 1983-, et al.
(författare)
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Siblings of children diagnosed with cancer : being faced with a moral dilemma
- 2021
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Ingår i: Journal of Family Studies. - : Routledge. - 1322-9400 .- 1839-3543. ; , s. 1-18
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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- Olsson, Erik, et al.
(författare)
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U-CARE : a research program on psychosocial care via the internet
- 2012
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Konferensbidrag (refereegranskat)abstract
- U-CARE is one of the Swedish government’s strategic research programs atUppsala University. The overarching goal is to promote psychosocial healthamong patients suffering from somatic disease and their significant others by means of self-help programs delivered via an internet platform. Another goal is to reduce costs for individuals and the society caused by emotional distress in response to somatic disease. Professionals within clinical psychology, health economics, and information systems collaborate to reach this goal.Approximately 20% of patients suffering from somatic disease as well as theirsignificant others experience a clinically relevant level of emotional distress in response to disease and treatment. This is in itself alerting, but becomes even moreproblematic since physicians and nurses show low sensitivity and specificityin detecting patients and significant others experiencing a clinically relevant level of distress. This can result in persistent distress causing human suffering as well as costs for individuals and the society.During 2010-2011 an internet platform: www.u-care.se to provide interactive support and cognitive behavioral therapy has been constructed within the U-CARE program. The platform supports, among other things, rule-based unfolding of self-help material for participants, interaction between participants and therapists, interaction within a participant community, and research including a detailed log of participants’ behaviors on the platform. In addition self-help programs of interactive support and cognitive behavioural therapy for adolescents with cancer: U-CARE: TeenCan, adults with cancer: U-CARE: AdultsCan, and adults having had a myocardial infarct: U-CARE: Heart to be provided via www.u-care.se have been constructed.Through a multi-disciplinary and design-oriented approach, the U-CARE program aims at developing new evidence-based knowledge in basic and applied psychosocial health care,and actively promoting its implementation in health care practice as well as in undergraduate and advanced education.
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- Silvén Hagström, Anneli, et al.
(författare)
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"TOGETHER WE ARE UNBEATABLE" : young sisters' narration of a sibling's cancer in personal blogs on the internet
- 2019
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : TAYLOR & FRANCIS LTD. - 1748-2623 .- 1748-2631. ; 14:1
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: Siblings of children and young people diagnosed with cancer are commonly reluctant to talk about their experiences due to the circumstances of the illness situation. This article aims to bring voice to experience and inform practice by investigating what and how three young sisters narrate about their illness experiences in personal blogs on the Internet.Methods: A narrative methodology for the analysis of life storytelling was applied primarily to investigate the sister's coping strategies and support needs.Results: The results show how the sisters constructed their own space for narration, with the main aims of expressing their feelings about the illness and seeking social support. The telling of their experiences along with encouraging comments from a supportive audience enabled a change in position from feeling neglected and silenced to being a recognized agent and caring sister. In addition, through their narrative coping the sisters went from powerless to powerful in their position in relation to cancer.Conclusion: The results highlight the need for siblings to be able to narrate experience in a supportive context, where the processing of their relationship with the ill sister/brother should be understood as an important element of their coping with cancer and death.
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- Toft, Teolinda, et al.
(författare)
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Feeling excluded and not having anyone to talk to : Qualitative study of interpersonal relationships following a cancer diagnosis in a sibling
- 2019
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 42, s. 76-81
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: To explore experiences related to interpersonal relationships following a cancer diagnosis in a sibling.METHODS: Respondents (n = 7 females) were recruited by means of convenience sampling during a camp for children affected by childhood cancer and their siblings. Data from children and adolescents with a sibling diagnosed with cancer was collected through individual face-to-face interviews and analyzed using systematic text condensation.RESULTS: Two categories portrayed the experiences related to interpersonal relationships following a cancer diagnosis in a sibling. Feeling excluded while wanting to maintain a relationship with their ill sibling and be involved in the care portrayed that trying to be involved in the care of their ill sibling was a stressful and difficult experience, since they were simultaneously expected to also manage household chores and attend school. Feeling stigmatized and exposed in social contexts while needing an allowing space to talk about their experiences portrayed the emotional difficulties evoked by social situations and behaviors of others, which left respondents feeling exposed and mistreated. Having the possibility to talk about their experiences and receiving social support was described as essential in order to cope with the situation.CONCLUSIONS: Health professionals need to take into consideration the emotional difficulties and vulnerable situation that children and adolescents who have a sibling diagnosed with cancer are at risk of experiencing. Stigmatization and social exposure present a risk of psychological distress. Having an allowing space to communicate feelings and experiences is desired. Interventions may be necessary to help these individuals psychologically cope.
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