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- Brorsson, Anna Lena, 1964, et al.
(författare)
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Randomised controlled trial of a person-centred transition programme for adolescents with type 1 diabetes (STEPSTONES-DIAB): a study protocol
- 2020
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Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 10:4
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Tidskriftsartikel (refereegranskat)abstract
- Introduction Adolescence is a critical period for youths with chronic conditions, when they are supposed to take over the responsibility for their health. Type 1 diabetes (T1D) is one of the most common chronic conditions in childhood and inadequate self-management increases the risk of short-term and long-term complications. There is a lack of evidence regarding the effectiveness of transition programmes. As a part of the Swedish Transition Effects Project Supporting Teenagers with chrONic mEdical conditionS research programme, the objective of this study is to evaluate the effectiveness and experiences of different transitional care models, including a person-centred transition programme aiming to empower adolescents with T1D to become active partners in their health and care. Methods and analysis In this randomised controlled trial, patients are recruited from two paediatric diabetes clinics at the age of 16 years. Patients are randomly assigned to either the intervention group (n=70) where they will receive usual care plus the structured transition programme, or to the control group (n=70) where they will only receive usual care. Data will be collected at 16, 17 and 18.5 years of age. In a later stage, the intervention group will be compared with adolescents in a dedicated youth clinic in a third setting. The primary outcome is patient empowerment. Secondary outcomes include generic, diabetes-specific and transfer-specific variables. Ethics and dissemination The study has been approved by the Ethical Review Board in Stockholm (Dnr 2018/1725-31). Findings will be reported following the Consolidated Standards of Reporting Trials statement and disseminated in peer-reviewed journals and at international conferences.
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- Myrin Westesson, Linda, et al.
(författare)
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A tortuous route to a capable fatherhood: the experience of being a father to a child with severe haemophilia
- 2015
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Ingår i: Haemophilia. - : Wiley. - 1351-8216 .- 1365-2516. ; 21:6, s. 799-805
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Haemophilia is a chronic illness that affects the whole family as the child’s reactions to the illness occur in interaction with the parents. Limited research has been conducted on how fathers of children with haemophilia experience their life situation. Aim: The aim of this study was to describe the lived experience of being a father to a child with severe haemophilia. Method: Individual, qualitative interviews were conducted with 14 fathers of 17 children with severe Haemophilia A. Data were analysed by means of a phenomenological hermeneutic method, including na€ıve reading, structural analysis and comprehensive interpretation. Results: The results revealed that the fathers gradually grew into fatherhood through a process that can be explained in the metaphor, ‘A tortuous road to a capable fatherhood’. The fathers experienced sorrow, powerlessness, concern and loss of a regular fatherhood after the child’s diagnosis. The loss of an envisaged fatherhood emerged as the greatest sorrow of being a father to a child with haemophilia. When home treatment with factor concentrates functioned without the involvement of Health Care Personal (HCP), the fathers’ sense of insufficiency decreased. Conclusion: A sense of being a capable father was associated with a sense of independence and control of one’s life situation. Support from the Haemophilia Treatment Centre (HTC) in the learning process is essential for both parents of a child with severe haemophilia. Awareness of the fathers’ struggle to feel capable is also vital while supporting the family in the first years after diagnosis.
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- Myrin Westesson, Lind, et al.
(författare)
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Reaching Independence Through Forced Learning: Learning Processes and Illness Management in Parents of Children Affected by Hemophilia
- 2018
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Ingår i: Qualitative Health Research. - : SAGE Publications. - 1049-7323 .- 1552-7557. ; 28:14
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Tidskriftsartikel (refereegranskat)abstract
- Hemophilia is a complex condition to manage, especially for parents to newly diagnosed children. This grounded theory study explores parents' learning processes and illness management in daily life during the first year after the start of their child's treatment. Using a longitudinal qualitative design, eight parents of four children were interviewed repeatedly during 12 to 14 months. The core category, reaching independence through forced learning, reflected the parents' learning process and their experiences of the challenges during the first year after start of treatment. Incentives for learning were characterized by a longing to reach independence and regain control of one's life situation. The emerging key incentive for learning was a desire to become independent of health care professionals. Early home treatment reduced the impact of the illness, and by supporting parents in different ways during the learning process, health care professionals can promote the parents' trajectory toward independency.
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- Vallmark, Mikaela, 1988, et al.
(författare)
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Development and psychometric evaluation of TEXP-Q: a questionnaire measuring transition and transfer experiences in emerging adults with type 1 diabetes.
- 2023
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Ingår i: Journal of patient-reported outcomes. - : Springer. - 2509-8020. ; 7:1
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Tidskriftsartikel (refereegranskat)abstract
- During transition to adulthood and transfer to adult healthcare, emerging adults with chronic conditions are at risk of deteriorating disease control, well-being, and acute, as well as long-term complications. Despite an increasing call for person-centred healthcare services attuned to young peoples' needs, few validated instruments exist pinpointing adolescents' and emerging adults' experiences of preparation for transition and transfer. Thus, the overarching purpose of this study was to develop a person-centred, clinically applicable instrument (Transitional care EXPeriences Questionnaire, TEXP-Q) adjustable to different chronic conditions, although the focus in the present study was Type 1 Diabetes. The specific aim was, therefore, to describe the development and psychometric evaluation of TEXP-Q in emerging adults with Type 1 Diabetes.Initial development of the TEXP-Q was inspired by existing research. Items were formulated in accordance with consensus recommendations for developing patient-reported measures, and extra consideration was taken to ensure person-centredness. Psychometric evaluation comprised two phases: In phase I, data from cognitive interviews, content validity indexing, and judgement of an expert panel provided information on face and content validity. In phase II, data from a cross-sectional study conducted at eight adult diabetes outpatient clinics in Sweden (n=163) allowed for explorative factor analysis (EFA), as well as calculation of content validity, reliability and responsiveness.Combining results from cognitive interviews, content validity index values and expert panel judgement, a test version of TEXP-Q was developed, the content and face validity of which were considered good. This version consisted of 17 items answered on a five-point Likert scale, and three open-ended questions answered in free text. During EFA, four items were removed, and a three-factor solution was recognised as most adequate, accounting for 60% cumulative variance and one single cross-loading. After EFA, the instrument comprised 13 questions, divided into three latent factors. Cronbach's alpha for the complete instrument was 0.866, which indicates good internal consistency. Crohnbach's alpha approximated to 0.8 for all factors respectively.TEXP-Q is a newly developed, person-centred instrument which has proven to be both valid and reliable when applied to youths with T1D. The questionnaire fills a need for instruments focusing on emerging adults' experiences of preparation for transition and transfer.
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- Acuña Mora, Mariela, et al.
(författare)
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Definitions, instruments and correlates of patient empowerment : A descriptive review
- 2021
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Ingår i: Patient Education and Counseling. - : Elsevier. - 0738-3991 .- 1873-5134.
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Forskningsöversikt (refereegranskat)abstract
- Objective: This review aimed to: (i) inventory the definitions and measurements of patient empowerment in healthcare literature; (ii) appraise the conceptual and methodological rigor of included studies; and (iii) identify correlates of patient empowerment in persons with chronic conditions.Methods: Four databases were searched to identify articles measuring patient empowerment in persons with chronic conditions, used a quantitative design and provided evidence on correlates of patient empowerment. Seventy-six articles were included and analyzed by descriptive statistics and summative content analysis.Results: The articles used a range of definitions (n = 35) and instruments (n = 38), evaluating a range of correlates in four categories: sociodemographic characteristics, clinical outcomes, patient-reported outcomes and patient-reported experiences. The most frequent associations were between patient empowerment and age (n = 21), sex (n = 15), educational level (n = 15) and quality of life (n = 18). However, they were not always significant.Conclusion: The broad variation of definitions and instruments highlights the lack of consensus on how to interpret and measure patient empowerment. Although several covariates have been evaluated, there are few studies assess the same relationships.Practice implications: Consensus on a definition and measurement of patient empowerment is needed to improve the quality of future research and to provide a more cohesive body of knowledge.
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