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  • 1. Bratt, E. L.
    et al.
    Burström, Å.
    Hanseus, K.
    Rydberg, Annika
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
    Berghammer, M.
    Do not forget the parents: Parents' concerns during transition to adult care for adolescents with congenital heart disease2018In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 44, no 2, p. 278-284Article in journal (Refereed)
    Abstract [en]

    Background: Growing up with congenital heart disease (CHD) often means transfer to adult care and lifelong medical follow-up. An optimal transition process usually involves a multipart collaboration between the patient, their parents and other family members, and the healthcare providers. Taking an active role while knowing when it is time to step aside can be difficult for all the concerned parties, even the healthcare professionals. The aim of the present study therefore, was to explore parents' expectations and needs during their adolescent's transition to adult care.

    Method: Semi-structured interviews were conducted with 18 parents of 16 adolescents (aged 13-18years) with CHD in 4 pediatric cardiology settings in Sweden. The interviews were analysed with qualitative content analysis.

    Results: The analysis resulted in 2 main themes: (a) Feeling securethe importance of being prepared and informed. This theme focused on the need to be prepared and informed about transition and future transfer to adult care. (b) Recognizing when to hand over at the right time. This theme addressed the process of handing over the responsibility from the parent to the adolescents and contained handing over from pediatric care to adult care.

    Conclusion: Being prepared and informed about the upcoming transition process was essential. The parents underlined the importance of being involved in the transition planning for gradually handing over responsibility to the adolescent. They also considered establishing contact with the adult healthcare team before transfer as important and needed to be assured that CHD-related information of importance for the young person's daily life would be given.

  • 2. Gantschnig, B. E.
    et al.
    Fisher, Anne G.
    Umeå University, Faculty of Medicine, Department of Community Medicine and Rehabilitation, Occupational Therapy.
    Page, J.
    Meichtry, A.
    Nilsson, Ingeborg
    Umeå University, Faculty of Medicine, Department of Community Medicine and Rehabilitation, Occupational Therapy.
    Differences in activities of daily living (ADL) abilities of children across world regions: a validity study of the assessment of motor and process skills2015In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 41, no 2, p. 230-238Article in journal (Refereed)
    Abstract [en]

    Background: One important goal of paediatric occupational therapy services is to improve activities of daily living (ADL) abilities of children. In order to plan and evaluate the effectiveness of targeted interventions, valid assessments are critically needed. The Assessment of Motor and Process Skills (AMPS) is an internationally standardized assessment of ADL performance that has not been validated for use with children in Middle Europe.

    Aim: To evaluate for (i) significant differences in mean ADL motor and mean ADL process ability measures among children from Middle Europe compared with children from North America, UK/Republic of Ireland, Nordic countries, Western Europe, Australia/New Zealand and Asia; and (ii) meaningful differences between the international age-normative means of the AMPS and those for children from Middle Europe.

    Method: We analysed data of children across world regions extracted from the international AMPS database using many-facet Rasch and two-wayanova analyses and by estimating contrasts to evaluate for significant group differences.

    Results: anova analyses of data for 11 189 children ages 2–15 revealed significant effects for mean ADL motor and ADL process ability by region [F ≥ 15.32, d.f. = (6, 11 091), MSE ≥ 0.20, P < 0.001, ή2 ≥ 0.008], and age [F ≥ 253.47, d.f. = (13, 11 091), MSE ≥ 0.20, P < 0.001, ή2 ≥ 0.229], and a significant interaction effect for mean ADL process ability [F = 1.48, d.f. = (78, 11 091), P = 0.004, ή2 = 0.010]. Out of 168 estimated contrasts between Middle Europe and the other world regions for mean ADL motor and ADL process ability, seven were statistically significant (4.17%), but none exceeded ±1SE from the international means.

    Conclusion: The AMPS remains free of relevant differences in mean ADL ability measures between Middle Europe and other world regions, indicating that the international age-normative mean values are likely to be applicable to children from Middle Europe. The AMPS can be used internationally to evaluate ADL performance in children and to determine if the child is eligible for occupational therapy services.

  • 3.
    Valan, Lotha
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Isaksson, Ulf
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Needs and expectations of nurse-led digital support among parents of children in child health care2023In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214Article in journal (Refereed)
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