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- Kassa, Ann-Marie, 1955-, et al.
(författare)
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Understanding of the transition to adult healthcare services among individuals with VACTERL association in Sweden: A qualitative study
- 2022
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Ingår i: Plos One. - : Public Library of Science (PLoS). - 1932-6203. ; 17:5
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Tidskriftsartikel (refereegranskat)abstract
- Current knowledge of transitional care from the perspective of individuals with congenital malformations is scarce. Their viewpoints are required for the development of follow-up programs and transitional care corresponding to patients' needs. The study aimed to describe expectations, concerns, and experiences in conjunction with transfer to adult health care among adolescents, young adults, and adults with VACTERL association, (i.e. vertebral defects, anorectal malformations (ARM), cardiac defects (CHD), esophageal atresia (EA), renal, and limb abnormalities). Semi-structured telephone interviews were performed and analyzed with qualitative content analysis. Of 47 invited individuals, 22 participated (12 males and 10 females). An overarching theme emerged: Leaving the safe nest of pediatric health care for an unfamiliar and uncertain follow up yet growing in responsibility and appreciating the adult health care. The participants described expectations of qualified adult health care but also concerns about the process and transfer to an unfamiliar setting. Individuals who were transferred described implemented or absence of preparations. Positive and negative experiences of adult health care were recounted including being treated as adults. The informants described increasing involvement in health care but were still supported by their parents. Ongoing follow up of health conditions was recounted but also uncertainty around the continuation, missing follow up and limited knowledge of how to contact health care. The participants recommended information ahead of transfer and expressed wishes for continued health care with regular follow up and accessibility to a contact person. Based on the participants' perspective, a transitional plan is required including early information about transfer and follow up to prepare the adolescents and reduce uncertainty concerning future health care. Meetings with the pediatric and adult team together with the patient and the parents are essential before transfer. Follow up should be centralized to centers with multi-professional teams well-experienced with the condition. Further studies are warranted to evaluate the transition process for adolescents and young adults with complex congenital health conditions.
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| 2. |
- Cederved, Catarina, et al.
(författare)
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Co-creation of a Serious Game About Radiotherapy : Participatory Action Research Study With Children Treated for Cancer
- 2022
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Ingår i: JMIR Human Factors. - : JMIR Publications Inc.. - 2292-9495. ; 9:2
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Tidskriftsartikel (refereegranskat)abstract
- Background: Children with cancer who have to undergo radiotherapy can experience fear, because they have no prior knowledge of the treatment. One way of teaching children about the treatment and reducing their fear is to prepare them for it through serious games. Involvement of the end user in the design process within medicine is a way of ensuring that the product being developed will fit the intended user.Objective: The aim was to outline the contributions made by children and their parents through participatory action research when designing a serious game about radiotherapy.Methods: By means of participatory action research, children and their parents participated in the development of a serious game about radiotherapy. Nine children (7-10 years old) were included, each with an accompanying parent. A qualitative approach was used that included interviews and participant observation. Six rounds of iterative development process were used with the children and their parents. Meetings with the children were held either face-to-face or online. Each round resulted in a list of suggestions for changes to the game. A thematic analysis was performed based on the list of proposed changes, underpinned by all gathered data, to highlight how the children’s participation changed the game.Results: Two main themes were identified. The first theme was “The children’s participation was affected by their health and treatment” and included the following subthemes: “an opportunity to share emotions and perceptions of radiotherapy” and “the possibility to participate was affected by the severity of the disease.” The second theme was “participation allowed becoming an active part of game development” and included the following subthemes: “the opportunity to express sentiments about the game,” “the emergence of a playable game through the children’s contributions,” and “the necessity of understanding the text.”Conclusions: The method used in this study made the children active participants, and our results suggest that this method can be used by health care researchers to cocreate serious games with children. It is necessary to inform the children involved that the process takes time, and that the process can be altered to allow as much participation as possible without placing a burden on them. The children’s illness affected their possibility to take part; thus, it is crucial to accommodate the children’s needs when conducting similar studies. The parents’ participation facilitated the meetings for their children, even though their involvement in the game design was negligible.
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