| 1. |
- Einberg, Eva-Lena, 1965-, et al.
(författare)
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Hur gör man barn delaktiga i forsknings- och innovationsprocesser vid utveckling av digitala hälsoinnovationer
- 2013
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Konferensbidrag (refereegranskat)abstract
- Att drabbas av en svår eller kronisk sjukdom under barndomen kan bidra till fysiska och psykosociala svårigheter senare i livet. Kamratstöd mellan individer som delar samma erfarenhet är en viktig främjande faktor till hälsa och välbefinnande och kan verka som en buffert mot stress och motgångar. Empirisk evidens som kan vägleda utveckling av digitala och interaktiva lösningar för kamratstöd mellan barn som drabbas av sjukdom i skolåldern är idag begränsad. Den process som presenteras här är fokuserad på att etablera metodologi för barns delaktighet i innovationsprocesser och att fånga barns bakomliggande beteenden och mål relaterat till kamratstödjande processer och hälsa. Intervjuer i fokusgrupper är en teknik som främjar barns deltagande och fångar barns perspektiv, förståelse och erfarenhet relaterat till deras hälsa. Friska barn (8-12 år) rekryterades från en lokal grundskola till fyra fokusgrupper med fyra barn i varje grupp. Barnen träffades två gånger med en intervall på 1-2 veckor. Förändringar gjordes mellan varje fokusgrupp för att anpassa strukturen på träffarna till en nivå motsvarande barnens erfarenheter, ålder och förmåga och för att fokusera diskussionerna på innovationsprocessen. En blandning av informativa och kreativa tekniker som öppna frågor, brainstorming, rita och måla och fotografering användes för att underlätta för barnen att uttrycka sig. Barnen framförde efter deltagandet att de tyckte om att delta och ville träffas igen i den här formen av grupp. Vår anpassade struktur på fokusgrupper används idag med barn med erfarenhet av svår sjukdom (cancer) för att ta fram typanvändare (Personas) i innovationsprocessen. Barnen rekryterades från Barnonkologiskt centra i Lund och Hallands sjukhus i Halmstad till fem fokusgrupper med tre barn i varje grupp. Barns delaktighet genom vår metod har förbättrat förutsättningarna att fånga barns mål och beteende och tillfört unikt material till den fortsatta designprocessen.
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| 2. |
- Einberg, Eva-Lena, 1965-, et al.
(författare)
-
Hur gör man barn delaktiga i forsknings- och innovationsprocesser vid utveckling av digitala hälsoinnovationer
- 2012
-
Konferensbidrag (refereegranskat)abstract
- Att drabbas av en svår eller kronisk sjukdom under barndomen kan bidra till fysiska och psykosociala svårigheter senare i livet. Kamratstöd mellan individer som delar samma erfarenhet är en viktig främjande faktor till hälsa och välbefinnande och kan verka som en buffert mot stress och motgångar. Empirisk evidens som kan vägleda utveckling av digitala och interaktiva lösningar för kamratstöd mellan barn som drabbas av sjukdom i skolåldern är idag begränsad. Den process som presenteras här är fokuserad på att etablera metodologi för barns delaktighet i innovationsprocesser och att fånga barns bakomliggande beteenden och mål relaterat till kamratstödjande processer och hälsa. Intervjuer i fokusgrupper är en teknik som främjar barns deltagande och fångar barns perspektiv, förståelse och erfarenhet relaterat till deras hälsa. Friska barn (8-12 år) rekryterades från en lokal grundskola till fyra fokusgrupper med fyra barn i varje grupp. Barnen träffades två gånger med en intervall på 1-2 veckor. Förändringar gjordes mellan varje fokusgrupp för att anpassa strukturen på träffarna till en nivå motsvarande barnens erfarenheter, ålder och förmåga och för att fokusera diskussionerna på innovationsprocessen. En blandning av informativa och kreativa tekniker som öppna frågor, brainstorming, rita och måla och fotografering användes för att underlätta för barnen att uttrycka sig. Barnen framförde efter deltagandet att de tyckte om att delta och ville träffas igen i den här formen av grupp. Vår anpassade struktur på fokusgrupper används idag med barn med erfarenhet av svår sjukdom (cancer) för att ta fram typanvändare (Personas) i innovationsprocessen. Barnen rekryterades från Barnonkologiskt centra i Lund och Hallands sjukhus i Halmstad till fem fokusgrupper med tre barn i varje grupp. Barns delaktighet genom vår metod har förbättrat förutsättningarna att fånga barns mål och beteende och tillfört unikt material till den fortsatta designprocessen.
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| 3. |
- Einberg, Eva-Lena, 1965-, et al.
(författare)
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Involving children in research and innovation processes in the development of digital health promotion intervention
- 2013
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Konferensbidrag (refereegranskat)abstract
- IntroductionSevere or chronic illness in childhood may contribute to physical and psychosocial problems later in life. Peer support among individuals who share the same experience is an important factor in promoting health and wellbeing and can act as a buffer against stress and adversities. Empirical evidence that could guide development of digital and interactive solutions for peer support between school-aged children affected by illness is limited.Purpose/MethodsThe process presented here is focused on establishing method- ology for children's participation in innovation processes and to capture the child's underlying behaviors and goals related to peer support processes and health. Focus group interview is a child-friendly method that promotes participation and access to children's perspectives, insights and experiences related to their health. Healthy children were recruited from a local elementary school. Focus groups were carried out in two sessions for each group with an interval of 1-2 weeks.ResultsAdjustments were made between each focus group to adapt the meeting structure to a level commensurate with the chil- dren's experience, age and abilities and to focus discussions on innovation incentives related to a digital peer support service. A mixture of informative and creative techniques such as open questions, brainstorming, drawing and painting and photog- raphy were used to assist the children to express themselves. The children were pleased to participate and wanted to meet again in this form of group.ConclusionsOur adapted focus group structure are now being used with children with experience of severe illness (cancer) to develop Personas (fictitious characters of users) in the innovation pro- cess. Children's participation through our method has improved the chances of capturing children's goals and behavior, and added unique material for the continuing design process.
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| 4. |
- Einberg, Eva-Lena, 1965-, et al.
(författare)
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Participatory innovation process for development of a digital peer support service for children with cancer
- 2012
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Ingår i: SIOP Publication Abstracts. - Hoboken, NJ : John Wiley & Sons. ; , s. 88-88
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Konferensbidrag (refereegranskat)abstract
- Purpose: Surviving cancer during childhood imposes a number of difficulties later in life. Peer support has been recognised as an important contributor to health and well-being but empirical evidence that could guide development of peer support programs for school aged children is scarce. The process presented here is focused on generic exploration of children’s needs and expectations related to peer support innovations to promote health and wellbeing of children with cancer. The purpose of this study is to establish a participatory innovation process that grasps the underlying behaviours and goals of children that will affect the design of a digital peer support service.Methods: Focus group interview is a child-friendly technique that promotes participation and access to children’s perspectives, insights and experiences related to their health. Healthy children 8–12 years of age were recruited from a local elementary school. Focus groups (n = 5 groups) were carried out in two sessions for each group (n = 4 children per group) with an interval of 1–2 weeks. Adjustments were made between each focus group to adapt the meeting structure to a level commensurate with the children’s experience, age and abilities and to focus discussions on innovation incentives related to a digital peer support service.Results: The adaptation process involved adjustments of the focus group structure to match children in the selected age group and to the aims of the innovation process. A mixture of informative and creative techniques (open questions, brainstorming, drawing, photography) assisted the children in talking and expressing themselves. The children were pleased to participate and wanted to meet again in this kind of study group. The adapted focus group sessions are now being used in the research and innovation process with children (8–12 yrs) with experience of cancer treatment.Conclusion: The final focus group structure capture children’s perspectives for the design of a digital peer support service.
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| 6. |
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| 7. |
- Stigmar, Jennie, 1976-, et al.
(författare)
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Young Adult Cancer Survivor's Experiences of Psychosocial Rehabilitation
- 2012
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Ingår i: Pediatric Blood & Cancer. - Hoboken : John Wiley & Sons. - 1545-5009 .- 1545-5017. ; 59:6, Special Issue: SI, s. 1122-1122
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The objective of this study was to establish innovation incentives based on young adult cancer survivor’s experiences of psychosocial rehabilitation following their treatment.Methods: Eligibility for the study cohort included diagnosis and treatment for paediatric acute lymphoblastic leukemia in Sweden prior to age 15 years between 1985 and 1997 and survival for at least 10 years (n = 416). A brief questionnaire including both closed and open questions were sent out by mail to all eligible subjects still living in Sweden and with a valid address in the population register (n = 374). Responses (n = 213, 57%) were analysed by descriptive statistics and qualitative content analysis.Results: Only a few of the survivors in the cohort had maintained contact with their paediatric oncology clinic (n = 30, 14%). However, continuation of regular clinical check-ups related to cancer treatment (n = 61, 28%) were more common. Of those who had no contact with health services, 61% were satisfied and 39% dissatisfied with the contact being terminated. A majority of survivors reported that they did not have experience of psychosocial rehabilitation focused on knowledge formation (58%), strategies for action (66%), or support (58%) to continue life the best way possible.Conclusion: This study highlights the potential for innovative resources for psychosocial rehabilitation during adolescence and the importance of supporting children’s and young adult’s initiatives to re-establishing contact with health care related to psychosocial rehabilitation. The school nurse can play a significant role in communication of such resources due to their proximity to children’s daily life post treatment.
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| 8. |
- Svedberg, Petra, et al.
(författare)
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Support from healthcare services during transition to adulthood : experiences of young adult survivors of pediatric cancer
- 2016
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Ingår i: European Journal of Oncology Nursing. - 1462-3889 .- 1532-2122. ; 21, s. 105-112
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE:Improved survival rates of pediatric cancer have drawn attention on how to best facilitate long-term follow up and transition from pediatric to adult care. The transition process is multifactorial and necessitates the joint involvement of the patient, the family and the healthcare providers. The purpose of this study was to explore the experiences of support from healthcare services during the transition from adolescence to adulthood described by young adult survivors of pediatric cancer.METHODS:A mixed method with a convergent parallel design was used to evaluate the experiences of receiving support from healthcare services (eg pediatric oncology and pediatric clinic) during transition from adolescence to adulthood described by young adult survivors of pediatric cancer (n = 213) in a nation wide cross-sectional survey.RESULTS:A quantitative assessment of the experienced extent and satisfaction of support from healthcare services to handle physical, mental and social changes to continue life after the disease showed that a majority of the participants had received insufficient support. The qualitative analysis indicated a need for equal roles in healthcare to promote participation, a need to manage and process consequences of the disease, and a need for continuous support.CONCLUSIONS:During transition to adulthood, there's a need for a personalized care plan that takes a holistic approach towards supporting the young cancer survivor in managing life in the best way. Identifying and handling the individual needs of pediatric cancer survivors is important for providing the resources and support required to increase the likelihood of successful transition to adulthood.
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| 9. |
- Svedberg, Petra, 1973-, et al.
(författare)
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Support from healthcare services during transition to adulthood – Experiences of young adult survivors of pediatric cancer
- 2016
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Ingår i: European Journal of Oncology Nursing. - London : Elsevier. - 1462-3889 .- 1532-2122. ; 21, s. 105-112
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: Improved survival rates of pediatric cancer have drawn attention on how to best facilitate long-term follow up and transition from pediatric to adult care. The transition process is multifactorial and necessitates the joint involvement of the patient, the family and the healthcare providers. The purpose of this study was to explore the experiences of support from healthcare services during the transition from adolescence to adulthood described by young adult survivors of pediatric cancer.Methods: A mixed method with a convergent parallel design was used to evaluate the experiences of receiving support from healthcare services (eg pediatric oncology and pediatric clinic) during transition from adolescence to adulthood described by young adult survivors of pediatric cancer (n = 213) in a nation wide cross-sectional survey.Results: A quantitative assessment of the experienced extent and satisfaction of support from healthcare services to handle physical, mental and social changes to continue life after the disease showed that a majority of the participants had received insufficient support. The qualitative analysis indicated a need for equal roles in healthcare to promote participation, a need to manage and process consequences of the disease, and a need for continuous support.Conclusions: During transition to adulthood, there's a need for a personalized care plan that takes a holistic approach towards supporting the young cancer survivor in managing life in the best way. Identifying and handling the individual needs of pediatric cancer survivors is important for providing the resources and support required to increase the likelihood of successful transition to adulthood. © 2016 Elsevier Ltd.
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