On Your Own Feet: Preferences and Competencies for Care of Adolescents with Chronic Conditions

Volwassen worden is extra lasti g voor jongeren die opgroeien met een chronische aandoening. Afgezien van de opgave om zelfstandig en zelfredzaam te worden, maken jongeren met chronische aandoeningen ook nog de transiti e van kinderzorg naar de volwassenenzorg door. De kwalitati eve en kwanti tati eve studies in het onderzoeksprogramma ‘Op Eigen Benen’ hebben de preferenti es en competenti es voor zorg in kaart gebracht van jongeren die behandeld worden in Erasmus MC Rott erdam. Ook zijn de ervaringen met de transiti e in zorg verzameld bij jongvolwassenen, hun ouders en zorgverleners. Jongeren willen graag betrokken worden bij de zorg en daarom zou het verstandig zijn om de zorgverlening te laten aansluiten bij hun behoeft en en voorkeuren. Verschillen in atti tudes en preferenti es van jongeren zijn onderscheiden in vier Q-zorgprofi elen die verschillende zelfmanagementsti jlen vertegenwoordigen. De daadwerkelijke parti cipati e van jongeren ti jdens consulten en bij de zelfzorg is nog gering; ook vergeleken met hun zelfeff ecti viteit en het gevoel ‘klaar te zijn’ voor de overstap. Aangezien de huidige transiti ezorg in Nederlandse ziekenhuizen volgens jongeren, ouders én zorgverleners tekort schiet, is het nodig om de kloof tussen kinder- en volwassenenzorg te overbruggen en de competenti es van jongeren te versterken zodat ze partners in zorg worden

‘Thick analysis’: strategie om de kwaliteit van kwalitatieve data-analyse te verhogen

Stelling Kwalitatief onderzoek produceert grote hoeveelheden ruwe data, wat kwalitatieve dataanalyse vaak complex en veeleisend maakt en van de onderzoeker(s) flexibiliteit, ervaring en vaardigheden verlangt. Onze stelling is dat in veel kwalitatief onderzoek aan deze complexiteit onvoldoende recht wordt gedaan, doordat in de dagelijkse praktijk vaak door tijdsdruk de pragmatiek overheerst of vaardigheden ontbreken om tot diepgaande analyse te komen. Daarmee gaat veel van de rijkdom en context van kwalitatieve data verloren. Wij pleiten daarom voor het toepassen van het bekende concept ‘triangulatie’ – traditioneel gedefinieerd als het toepassen van meerdere dataverzamelingsmethoden in een studie – op kwalitatieve data-analyse, om zo de diepte, kwaliteit en eventueel reikwijdte van de bevindingen te vergroten. Analysetriangulatie wordt nog niet veel toegepast, maar is volgens ons een realistische en bruikbare strategie om de methodologische kwaliteit van kwalitatief onderzoek verder te verhogen. Deze strategie is ook geschikt voor onderzoekers die kwalitatief onderzoek doen buiten de ‘academie’. Wij werken een en ander hierna uit

The road to independence: Lived experiences of youth with chronic conditions and their parents compared

__Abstract__ PURPOSE: To gain insight into the development of young persons with chronic conditions towards independence by comparing their lived experiences to those of their parents. METHODS: Semi-structured interviews were held with 16 young persons (7 males, 9 females; 15-22 years) and one of their parents (n=16), asking about the young persons' daily lives and their development towards adulthood. Themes were deductively derived from the Skills for Growing Up framework, i.e. agency, living and daily activities, social and intimate relationships, education, work, leisure activities, transportation, and healthcare. Parents also reflected on how they dealt with the child's chronic condition. A paired thematic analysis was conducted. RESULTS: Parents were often less convinced that their children could act independently than the young persons themselves. They were concerned about them and tended to interfere with their daily lives, often to the annoyance of their children. Also, parents often perceived more barriers in social participation, while young persons were more positive. CONCLUSION: The perceptions of young persons and their parents clashed on living independently, intimate relationships, leisure activities, and healthcare. Young people might benefit from professional support in these domains to help them strengthen their autonomy and to prevent child-parent conflict and negative outcomes

How to define successful transition? An exploration of consensus indicators and outcomes in young adults with chronic conditions

Background: In this short report, we use data from a previous cohort study to explore the relationship between five out of eight consensus indicators for successful transition and patient-reported outcomes in young adulthood. Methods: Data came from a 6-year cohort study that consisted of a survey among 518 young adults with various chronic conditions and a review of their electronic patient records. Associations between five indicators for successful transition and background variables and patient-reported outcomes were explored with Spearman's r. Significant variables were included in stepwise (logistic) regression analyses with transition outcomes as dependent variables. Results: The indicators relate to some extent to better healthcare-related transition outcomes, but not to autonomy in participation. The explained variance of the models varied from 9.7% to 26.4%. The change in explained variance after adding indicators varied from 2% to 16%. Conclusions: The challenge of translating the definition of transition into holistic indicators remains. The current consensus indicators are a good start, but there is more to transition than transfer

The impact of type 1 diabetes on young adults' health-related quality of life

BACKGROUND: Young adulthood is a challenging period for people with diabetes mellitus type 1 (T1DM) as they are facing multiple life transitions while managing a demanding disease. This poses a risk for impaired health-related quality of life (HRQOL). We assessed HRQOL in a cohort of young adults with T1DM in the Netherlands, and compared outcomes with those of Dutch norm groups of healthy young adults and young adults with a chronic disease. METHODS: We analyzed data collected in a larger evaluation study on transitional care for young adults with T1DM in a nationwide sample in the Netherlands, including twelve participating hospitals. These data had been obtained from online questionnaires completed by young adults with T1DM after they had transferred to adult care. HRQOL was self-reported with the Pediatric Quality of Life Inventory for young adults (PedsQL-YA). RESULTS: One hundred and sixty-five young adults with T1DM participated (44.2% response); and they scored significantly worse than did healthy peers on all domains of HRQOL, except social functioning. Particularly, functioning at school or work was worse than that of the norm group. The study group's HRQOL-scores were comparable to norm scores of young adults with chronic diseases, although the physical and social functioning of young people with T1DM was better. One quarter (26.1%) of all young adults with T1DM reported fatigue. CONCLUSIONS: During transition to adulthood, young adults with T1DM struggle to maintain a balance between the demands of managing a disease and their life. Many of them encounter problems at work or school, and suffer from fatigue. These findings underscore the need to regularly assess HRQOL, and to discuss work- and education-related issues in clinical practice

Evaluating outpatient transition clinics: a mixed methods study protocol

__Introduction:__ To support young people in their transition to adulthood and transfer to adult care, a number of interventions have been developed. One particularly important intervention is the transition clinic (TC), where paediatric and adult providers collaborate. TCs are often advocated as best practices in transition care for young people with chronic conditions, but little is known about TC models and effects. The proposed study aims to gain insight into the added value of a TC compared with usual care (without a TC). __Methods and analysis:__ We propose a mixedmethods study with a retrospective controlled design consisting of semistructured interviews among healthcare professionals, observations of consultations with young people, chart reviews of young people transferred 2–4 years prior to data collection and questionnaires among the young people included in the chart reviews. Qualitative data will be analysed through thematic analysis and results will provide insights into structures and daily routines of TCs, and experienced barriers and facilitators in transitional care. Quantitatively, within-group differences on clinical outcomes and healthcare use will be studied over the four measurement moments. Subsequently, comparisons will be made between intervention and control groups on all outcomes at all measurement moments. Primary outcomes are ‘no-show after transfer’ ( process outcome) and ‘experiences and satisfaction with the transfer’ (patient-reported outcome). Secondary outcomes consider clinical outcomes, healthcare usage, self-management outcomes and perceived quality of care. __Ethics:__ The Medical Ethical Committee of the Erasmus Medical Centre approved the study protocol (MEC-2014-246). __Dissemination:__ Study results will be disseminated through peer-reviewed journals and conferences. The study started in September 2014 and will continue until December 2016. The same study design will be used in a national study in 20 diabetes settings (2016–2018)

The development and psychometric validation of the self-efficacy and performance in self-management support (SEPSS) Instrument

__Aim:__ To develop and psychometrically test the self-efficacy and performance in self-management support (SEPSS) instrument. __Background:__ Facilitating persons with a chronic condition to take an active role in the management of their condition, implicates that nurses acquire new competencies. An instrument that can validly and reliably measure nurses' performance and their perceived capacity to perform self-management support is needed to evaluate current practice and training in self-management support. __Design:__ Instrument development and psychometric testing of the content and construct validity, factor structure and reliability. __Methods:__ A literature review and expert consultation (N = 17) identified the content. The items were structured according to the Five-A's model and an overarching category of 'overall' competencies. The initial instrument was tested in a sample of 472 nurses and 51 nursing students from Belgium and the Netherlands, between June 2014-January 2015. __Results:__ Confirmatory factor analyses revealed satisfactory fit indices for the six-factor structure. Discriminating power was demonstrated for subgroups. The overall internal consistency (Cronbach's alpha) was high both for the self-efficacy and the performance items. The test-retest intra-class correlation coefficients were good. __Conclusion:__ The SEPSS instrument is a 36-item, Likert-scaled self-reporting instrument with good content and construct validity, and good internal consistency reliability and good test-retest reliability. Therefore, it is a promising instrument to measure self-efficacy and performance with regard to self-management support

Reducing bottlenecks: Professionals' and adolescents' experiences with transitional care delivery

Background: The purpose of this study was to describe the interventions implemented in a quality improvement programme to improve transitional care and eval

What support is needed to self-manage a rheumatic disorder: a qualitative study

__Background:__ Today, patients are expected to take an active role in the form of self-management. Given the burden of a rheumatic disorder, the patients cannot be expected to self-manage on their own. In order to develop self-management interventions that fit patients' needs and preferences, it is essential to examine patients' perspective on how support can be optimized. This study aimed to identify support needs of outpatients with rheumatic disorders and preferences for who should provide self-management support. __Methods:__ A qualitative study was conducted using focus groups and individual interviews with outpatients with rheumatic disorders treated in a Dutch university hospital. Interview data was analysed with Directed Content Analysis and coded with predetermined codes derived from our model about support needs of chronically ill patients. This model distinguished three types of support: instrumental, psychosocial and relationa