Background: Receiving adequate support seems to be crucial to the success of self‐management. Although different empirical studies separately examined patients' preferences for self‐management support (SMS), an overview is lacking.Objective: The aim of this qualitative review was to identify patients' needs with respect to SMS and to explore by whom this support is preferably provided.Search strategy: Qualitative studies were identified from Embase, MEDLINE OvidSP, Web of science, PubMed publisher, Cochrane central, the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and PsycINFO.Inclusion criteria: Articles needed to meet all of the following criteria: (i) focuses on self‐management, (ii) concerns adult patients with rheumatic diseases (rheumatoid arthritis and fibromyalgia), a variant of cancer or chronic kidney disease, (iii) explores support needs from the patients' perspective, (iv) uses qualitative methods and (v) published in English.Data extraction and synthesis: A thematic synthesis, developed by Thomas and Harden, was conducted of the 37 included studies.Main results: Chronic patients need instrumental support, psychosocial support and relational support from health‐care professionals, family/friends and fellow patients to manage the chronic condition. Relational support is at the centre of the support needs and fuels all other types of support.Discussion and conclusions: Patients do not self‐manage on their own. Patients expect health‐care professionals to fulfil a comprehensive role. Support needs can be knitted together only when patients and professionals work together on the basis of collaborative partnership. Dynamics in support needs make it important to regularly assess patient needs.

To explore associations between adolescents' perception of their readiness to transfer to adult care and socio-demographic and disease-related characteristics, effect of the condition, self-management ability, and attitude toward transition. A cross-sectional study was conducted in a Dutch university hospital, where all adolescents (12-19 years) with somatic chronic conditions (n = 3,648) were invited to participate in a web-based questionnaire. Invitations were issued to those without an intellectual disability and who had been under treatment for at least 3 years. In all, 30% (n = 1,087) of the adolescents responded; 954 assessed their perception of readiness for transfer. The majority (56%) felt that they were ready for transfer. Logistic regression analyses showed that 48% of the total variance in transfer readiness (TR) could be explained. Feeling more self-efficacious in skills for independent hospital visits and a greater perceived independence during consultations were found to be most strongly associated with being ready to transfer. Higher TR was associated with older age, but age did not prove to be the most important explaining variable. Adolescents with a more positive attitude toward transition and those who reported more discussions related to future transfer also felt more ready. Disease-related factors and effect of the condition including quality of life were only weakly associated with higher TR. Adolescents' attitude to transition and their level of self-efficacy in managing self-care seem to be the keystones to TR. This study suggests that individual transition plans and readiness assessments might prove to be beneficial. Strengthening adolescents' independence and self-management competencies, combined with early preparation and repeated discussions on transition, seem to be useful strategies to increase adolescents' readiness for transfer to adult care.

Background: 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.Methods: 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.Results: 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.Conclusions: 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.

To provide a systematic overview of self-management interventions (SMI) for young people with chronic conditions with respect to content, formats, theories, and evaluated outcomes. Embase, Medline, PsycINFO, Web-of-Science, CINAHL, and Cochrane were searched. Reviews' reference lists were scrutinized. Selected studies were: Original research articles in English published between 2003 and March 2014; about the evaluation of SMI for 7 to 25-year-olds with somatic chronic conditions/physical disabilities; with clear outcomes and intervention descriptions. The classification of medical, role and emotion management served to review content. Formats, theories, and evaluated outcomes were summarized. 86 studies were reviewed. Most aimed at medical management and were unclear about theoretical bases. Although a variety of outcomes was evaluated and the distribution over self-management domains was quite unpredictable, outcomes conceptually related to specific content. A content-based framework for the evaluation of self-management interventions is presented. SMI relate to self-management tasks and skill-building. Yet, conceptualizations of self-management support often remained unclear and content focuses predominantly on the medical domain, neglecting psycho-social challenges for chronically ill young people. Future evaluations should match outcomes/themes to content and characteristics. Our framework and overview of SMI characteristics and outcomes may assist clinicians in providing self-management support.

Adolescents with chronic conditions have to learn to self-manage their health in preparation for transitioning to adult care. Nurses often struggle with how to approach youth with chronic conditions successfully. Little is known about the preferences and attitudes of these young people themselves. To uncover preferences for self-management and hospital care of adolescents with various chronic conditions. A Q-methodological study was conducted. Semi-structured interviews were held with adolescents who rank-ordered 37 opinion statements on preferences for care delivery and self-management. They were asked to motivate their ranking. By-person factor analysis was conducted to uncover patterns in the rankings of statements. The factors were described as preference profiles. A purposive sample of 66 adolescents (12-19 years) treated in a university children's hospital in the Netherlands was invited to participate. Thirty-one adolescents, 16 boys and 15 girls with various chronic conditions eventually participated (response 47%). Eight participants (26%) had a recently acquired chronic condition, while the rest (74%) had been diagnosed at birth or in the first 5 years of life. Four distinct preference profiles for health care delivery and self-management were identified: 'Conscious & Compliant'; 'Backseat Patient'; 'Self-confident & Autonomous'; and 'Worried & Insecure'. Profiles differ in the level of independence, involvement with self-management, adherence to therapeutic regimen, and appreciation of the parents' and health care providers' role. The desire to participate in treatment-related decisions is important to all preference profiles. The profiles are recognizable to adolescents and nurses alike. As Q-methodology allows no inferences with respect to the relative distribution of these profiles in a given population, only tentative hypotheses were formulated about associations between profiles and patient characteristics. This study increases our understanding of different subjectivities of adolescents living with a chronic condition related to their treatment and health. There is no "one size fits all" approach to adolescent health care, but rather a limited number of distinct preference profiles. This study demonstrates the value of a non-disease-specific approach in that adolescents with various chronic conditions were found to have much in common. The profiles seem a promising tool for nurses to actively seek adolescents' opinion and participation in health care and will be further explored.