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

“What we want”: chronically ill adolescents’ preferences and priorities for improving health care

Background: As important users of health care, adolescents with chronic conditions deserve to be consulted about their experiences and expectations. This study aimed to explore chronically ill adolescents' preferences regarding providers' qualities, and outpatient and inpatient care. Furthermore, suggestions for improvement of service delivery were collected. Methods: This research was a sequential mixed methods study in adolescents aged 12-19 years with various chronic conditions treated in a university children's hospital. Methods comprised 31 face-to-face interviews at home, a hospital-based peer research project in which nine adolescents interviewed 34 fellow patients, and a web-based questionnaire (n = 990). Emerging qualitative themes were transformed into questionnaire items. Results: Having "a feeling of trust" and "voice and choice" in the hospital were central to these adolescents. Regarding providers' qualities, 'being an expert' and "being trustworthy and honest" were ranked highest, followed by "being caring and understanding", "listening and showing respect", and "being focused on me". Regarding outpatient consultations, preferences were ranked as follows: "answering all questions"; "attending to my and my parents' needs"; and "clear communication", while "limited waiting times" and "attractive outpatient surroundings" scored lowest. Regarding hospitalization, adolescents most preferred to 'avoid pain and discomfort', "keep in touch with home", and "be entertained", while "being hospitalized with peers" and "being heard'" were least important. Regarding priorities for improvement, 52% of the respondents felt that more attention should be paid to older children, followed by enabling more contact with family and friends (45%), shorter waiting times (43%), and more activities to meet fellow patients (35%). Conclusion: Adolescents prefer technically competent providers, who are honest and trustworthy, and attend to their needs. As they gradually grow out of the pediatric environment, they desire staff attitudes to become less childish and more age-appropriate, and welcome being treated as an equal partner in care. Health care professionals should inquire into preferences and adjust their communication style accordingly

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

The proxy problem anatomized: child-parent disagreement in health related quality of life reports of chronically ill adolescents

<p>Abstract</p> <p>Background</p> <p>Discrepancy between self-reports and parent-proxy reports of adolescent health-related quality of life (HRQoL) has been repeatedly acknowledged in the literature as the proxy problem. However, little is known about the extent and direction of this discrepancy. The purpose of this study is to explore to what extent and in what direction HRQoL self-reports of adolescents with chronic conditions and those of their parents differ.</p> <p>Methods</p> <p>A cross-sectional survey was conducted among adolescents suffering from chronic conditions and their parents. Socio-demographic and disease-related characteristics were collected and information about consequences of the chronic condition was assessed. HRQoL was measured with KIDSCREEN-10 and DISABKIDS condition generic measure (DCGM-10). Agreement was analysed through defining a threshold of agreement based on half of the standard deviation of the HRQoL score with the highest variance. Agreement occurred if the difference between adolescent and parent scores was less than or equal to half of the standard deviation. Intra-class correlation coefficients and Bland-Altman plots were also computed. The characteristics associated with direction of disagreement were statistically tested with one-way ANOVA and Chi-square tests.</p> <p>Results</p> <p>584 paired HRQoL scores were obtained. Ratings from both adolescents and parents were high, compared to European norm data. Differences between adolescents and parents were statistically significant, yet relatively small. Disagreement existed in both directions: in 24.5% (KIDSCREEN-10) and 16.8% (DCGM-10) of the cases adolescents rated their HRQoL lower than did their parent, while in 32.2% (KIDSCREEN-10) and 31.7% (DCGM-10) of the cases the opposite was true. Adolescent's age, educational level and type of education, parent's educational level, number of hospital admissions and several other disease-related factors influenced direction of disagreement.</p> <p>Conclusions</p> <p>In a reasonable proportion of cases the adolescent and parent agreed on the adolescent's HRQoL (43-51% of the cases) and most disagreement tended to be minor. Thus, the proxy problem may be smaller than presented in the literature and its extent may differ per population. As adolescents are expected to become partners in their own health care, it is recommended to focus on adolescents' own perceptions of HRQoL.</p