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- Jenholt Nolbris, Margaretha, 1956, et al.
(författare)
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Sibling supporters' experiences of person-centred care for siblings who have a brother or a sister with cancer
- 2015
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Ingår i: SIOP 2015, 47th Congress of the International Society of Paediatric Oncology, 08-11 October 2015, Cape Town, South Africa.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Conclusions The sibling supporters think that they can give beneficial support to siblings who have a brother or a sister with cancer. They felt that they gave the siblings person-centred care, which meant that they listened to the siblings´ stories and met them where they were in their crisis. The study confirms that sibling supporters should be a part of the healthcare team that treats and supports the family when a child has cancer. Background Siblings of a child with a life-threatening disease such as cancer have a right to measures that promote their health and welfare. Siblings may find it hard to understand what is happening to the sick child with cancer and why they react as they do. In Sweden sibling supporters started to become a part of children´s cancer centers in 1990. Since 2013 are sibling supporters available at all of the six children´s cancer centers in Sweden and funded by the Children's Cancer Fund. The sibling supporter carries out various activities together with siblings and listens to their situation. He/she meets the siblings during the sick child is alive and when he/she is dying or has died. Purpose The aim of this project was to explore sibling supporters’ thoughts about the possibilities they had to provide support for siblings with a brother or a sister with a life-threatening disease such as cancer. The research question was to explore the sibling supporters’ experiences of supporting the siblings of children with cancer. Method The study was qualitative descriptive in design. The data were collected from August 2014 to September 2014 by means of qualitative interviews as a form of communication between the interviewers and each of the 12 sibling supporters. The participants comprised 9 women and 3 men, aged between 35 and 57 years (mean 46 years). They had been working as a sibling supporter between 1.5 and 15 years (mean 5 years). Qualitative content analysis was used to draw a systematic conclusion from the text and also to extract its message. Results The text resulting from the content analysis was sorted into five categories. The five categories that make up the participants´ thoughts about the possibilities they had are presented below. 1. Want to be a support from diagnosis to death. 2. Will allow the siblings to meet each other. 3. Facilitate for siblings through ageappropriate activities. 4. Letting the siblings be encouraged by a positive environment. 5. The sibling supporters help siblings by interacting with people around them.
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- Melin-Johansson, Christina, et al.
(författare)
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The Recovery Process When Participating in Cancer Support and Rehabilitation Programs in Sweden
- 2015
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Ingår i: Global qualitative nursing research. - : Sage Publications. - 2333-3936. ; 2
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Tidskriftsartikel (refereegranskat)abstract
- The aim was to illuminate the meaning of participating in support and rehabilitation programs described by people diagnosed with cancer. Nineteen persons were interviewed in focus groups and face-to-face. Data were analyzed with a qualitative phenomenological hermeneutical method for researching lived experiences. Interpretation proceeded through three phases: naïve reading, structural analysis, and comprehensive understanding. Three themes were disclosed: receiving support for recovery when being most vulnerable, recapturing capabilities through supportive activities, and searching to find stability and well-being in a changed life situation. Participating in the programs was an existential transition from living in an unpredictable situation that was turned into something meaningful. Recovery did not mean the return to a state of normality; rather, it meant a continuing recovery from cancer treatments and symptoms involving recapturing capabilities and searching for a balance in a forever changed life. This study provides new insights about the experiences of participating in cancer support and rehabilitation programs.
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- Nilsson, Stefan, et al.
(författare)
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Young adults' childhood experiences of support when living with a parent with a mental illness
- 2015
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Ingår i: Journal of child health care. - : Sage Publications Ltd.. - 1367-4935 .- 1741-2889. ; 19:4, s. 444-453
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Tidskriftsartikel (refereegranskat)abstract
- There are several concerns in relation to children living with a parent suffering from a mental illness. In such circumstances, the health-care professionals need to involve the whole family, offering help to the parents on parenting as well as support for their children. These children are often helped by participating in meetings that provide them with contact with others with similar experiences. The aim of this study was to investigate young adults' childhood experiences of support groups when living with a mentally ill parent. Seven young women were chosen to participate in this study. A qualitative descriptive method was chosen. The main category emerged as 'the influence of life outside the home because of a parent's mental illness' from the two generic categories: 'a different world' and 'an emotion-filled life'. The participants' friends did not know that their parent was ill and they 'always had to…take responsibility for what happened at home'. These young adults appreciated the support group activities they participated in during their childhood, stating that the meetings had influenced their everyday life as young adults. Despite this, they associated their everyday life with feelings of being different. This study highlights the need for support groups for children whose parents suffer from mental illness.
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- Sparud Lundin, Carina, 1964, et al.
(författare)
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Use of participatory design in the development of person-centred web-based support for persons with long-term illness
- 2015
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Ingår i: Abstracts: 19th International Philosophy of Nursing Society (IPONS) conference August 24-26, 2015 Karolinska Institutet, Stockholm, Sweden. - Stockholm : Karolinska Institutet. ; , s. 43-43
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Konferensbidrag (refereegranskat)abstract
- Background: E-health solutions are increasingly developed to meet patients’ preferences and promote their participation in their health care. This has led to increased interest in person-centred technology developed by means of participatory approaches. However, few studies explore the participatory design process from the perspective of person-centeredness including how it becomes materialized in the informational technology. This paper explores how applied participatory approaches and the design of four web based supports correspond to key areas of person-centeredness.Aim and method: The purpose was to create shared knowledge and understanding of each separate case and to generate relevant categories. Data was collected from four Swedish research projects. The analysis followed an inductive approach involving a step-wise cross-case analysis.Results: A number of question areas describe the dialogue with the participants in the cases. The areas cover individual, social, and practical issues. The results of the dialogue are categorized into four support areas; psychological/emotional, personal, information, technical. By means of common as well as specifically developed technical solutions the support areas becomes visible in the design. Person-centredness will appear in the participatory design (PD) process as the approach promotes the development of a holistic view of the person and the illness and a partnership between patients and carers.Conclusions: Our results contribute to a central development area within eHealth involving greater opportunities for the patient to actively contribute in real time, getting access to and add information, and sometimes interact directly with carers. However, it is concluded that neither participatory approaches nor technology for online information and communication can guarantee personcenteredness by itself. Instead, it is the design of the PD process and the forming of the actual use of technology together with the particular purpose of the web based support that shape person-centred online support.
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