Jane N.T. Sattoe

‘SKILLS FOR GROWING UP’: SUPPORTING AUTONOMY IN YOUNG PEOPLE WITH KIDNEY DISEASE

BACKGROUND AND OBJECTIVES End-stage kidney disease (ESKD) may interfere with childrens developmental task of acquiring autonomy and participation. The Skills for Growing Up tool encourages normal development towards independence and autonomy during paediatric rehabilitation. This study aimed to adapt this self-management tool for use in paediatric nephrology, and to test whether its use is feasible in daily practice. DESIGN AND PARTICIPANTS A Delphi study was conducted among patients, their parents, professionals and experts to adjust the tool for use in nephrology. Feasibility was studied through individual and group interviews with professionals in all Dutch paediatric nephrology centres. RESULTS Agreement was reached on the areas of social participation and medical management of ESKD. Compared with the original, the new instrument holds considerable more attention for autonomy in the renal healthcare area; for example, dealing with medication and transplantation. Professionals used and appreciated the tool, but the paper form was seen to limit feasibility. CONCLUSIONS Making the tool available online is important. The challenge for professionals is to move beyond the focus on medical management and to consider developmental tasks when coaching their patients into adulthood. APPLICATION TO PRACTICE The Skills for Growing Up-Nephrology (SGU-N) tool is a promising instrument for use by professionals in paediatric nephrology. Its use can help young people achieving autonomy and may contribute to their successful transition to adulthood and adult care.

Exploring effectiveness and effective components of self-management interventions for young people with chronic physical conditions: A systematic review

OBJECTIVE To systematically explore the effectiveness and effective components of self-management interventions. METHODS Study selection criteria were: Original articles in English published between 2003 and 2015; focusing on youth with chronic conditions; describing self-management interventions; with clear outcome measures; using RCT design. The random effects analysis was applied in which standardized mean differences per study were calculated. RESULTS 42 RCTs were included. Interventions focused on medical management, provided individually in clinical settings or at home by mono-disciplinary teams showed a trend in improving adherence. Interventions delivered individually at home by mono-disciplinary teams showed a trend in improving dealing with a chronic condition. CONCLUSIONS AND PRACTICAL IMPLICATIONS Adherence could be improved through interventions focused on medical management, provided individually in a clinical or home setting by a mono-disciplinary team. Interventions focused on dealing with a chronic condition might be provided individually, through telemedicine programs facilitating peer-support. These intervention elements seemed effective irrespective of diagnosis, and may therefore act as good starting points for further research into and for improvement of self-management support for youth with chronic conditions in pediatric care. Results underlined the need to systematically develop and evaluate self-management interventions, since this may provide more evidence for effectiveness and effective intervention components.

Verpleegkundige ondersteuning bij zelfmanagement en eigen regie

Onder redactie van AnneLoes van Staa, Ada ter Maten-Speksnijder en Lausanne Mies. Dit boek helpt verpleegkundigen, studenten verpleegkunde en verpleegkundig specialisten het zelfmanagement van mensen met chronische aandoeningen te ondersteunen. Dat behoort tot de kerntaak van elke verpleegkundige. Het boek geeft daarvoor de kennis, traint de vaardigheden en bespreekt de gewenste attitude, zoals een open houding, goede gespreksvoering en samenwerking met de patient en andere (mantel)zorgverleners.

Recording and accounting for stakeholder involvement in systematic reviews

OBJECTIVES The use of stakeholders in systematic reviews is increasingly valued, but their influence on the systematicity of the review is often unclear. The aim of this study was to describe some of the processes of involvement of stakeholders and to demonstrate a Tool for Recording and Accounting for Stakeholder Involvement (TRASI). METHODS We demonstrate the TRASI in two worked examples. In one project, the reviewers collaborated with the end-user and an expert during the literature search. In the other project, experts were consulted to generate keywords before searching the literature. RESULTS In the first project, disagreements about keywords to identify studies for the research topic were solved by informal discussion. In the second project, difficulties arose in reaching agreement between experts and reviewers about the core construct and the meaningful keywords associated with it. DISCUSSION The TRASI aids researchers to systematically and transparently account for the decisions taken. The TRASI supports information specialists and librarians to shape the search strategy to match the objectives of the review. CONCLUSIONS We propose the TRASI as a first step in resolving the challenges of detecting and reconstructing stakeholder influences. Potential new applications of the TRASI are discussed.

Patient empowerment in young persons with chronic conditions: Psychometric properties of the Gothenburg Young Persons Empowerment Scale (GYPES)

Purpose Empowerment in patients can lead to a higher participation in care and self-management skills. However, there are a limited number of high-quality instruments to assess empowerment and its various dimensions in young persons. The aim was to develop and assess the psychometric properties of the Gothenburg Young Persons Empowerment Scale (GYPES). Methods The GYPES is a 15-item questionnaire designed to measure patient empowerment in young persons with chronic conditions. Three studies were conducted to evaluate the psychometric properties of the scale. Studies I and II assessed face, content and factorial validity, as well as responsiveness and reliability in young persons with congenital heart disease and diabetes. After these studies problematic items were identified and reworded and the final version of the GYPES was tested in young persons with diabetes in study III. Results The content and face validity of the scale was confirmed in study I. Confirmatory factor analyses (CFA) in study II supported the five-factor structure of the GYPES. However, one item had a low factor loading. The scale was revised and evaluated in study III. CFA of this version supported adequate model fit with factor loadings ranging from 0.385–0.941. A second-order model had an adequate fit to the data. Cronbach’s alpha for the overall scale was 0.858 and for each subscale, alphas range from 0.609–0.858. Conclusions GYPES was developed to measure patient empowerment in young persons with chronic conditions. Preliminary evidence supports that the GYPES may be a valid and reliable tool for assessing young persons’ empowerment.