Sander R. Hilberink

Transferring Young People With Profound Intellectual and Multiple Disabilities From Pediatric to Adult Medical Care: Parents' Experiences and Recommendations

Many children with profound intellectual and multiple disabilities (PIMD) now reach adulthood. The aim of this study was to elicit parents experiences with the transfer from pediatric to adult medical care. A convenience sample of 131 Dutch parents of young people with PIMD (16-26 years) completed a web-based questionnaire. Twenty-two percent of the young persons were still in pediatric care; 22% of the others had no care coordinator, although their health needs were the same. Parents valued the care provided by the pediatrician, and wished to see it continued. They were critical about how they had been prepared for transfer to adult care. Parents provided suggestions to improve transitional care, such as early start, information provision, and a joint consultation between pediatric and adult care.

Lagging Behind or Not? Four Distinctive Social Participation Patterns Among Young Adults With Chronic Conditions

PURPOSEnTypical childhood and adolescent development and acquiring self-management skills are crucial for a satisfying adult life and autonomy in social participation. The aims of this study were to identify patterns of autonomy in social participation and to explore differences between these patterns.nnnMETHODSnAdolescents with various chronic conditions participating in a survey in 2006 (T0) were re-invited for a follow-up study (T1) in 2012. The young adults (18-25 years of age) assessed self-management skills, their conditions impact on school or work, health-related quality of life (HRQoL), and social participation in various domains. Patterns were identified through cluster analysis. Differences between patterns were analyzed in bivariate and multivariate analyses.nnnRESULTSnCompared with healthy age-mates, our sample (n = 483) generally lagged behind in social participation. Four patterns emerged: typical developers, financially secure laggers, slow developers, and outgoing laggers. The patterns differed regarding gender, educational level, attending special education, having disability benefits, and degree of physical limitations. Groups with a higher level of autonomy in social participation did not necessarily have higher HRQoL but did report higher self-efficacy and independence at both measurements.nnnCONCLUSIONSnAutonomy in some participation domains can coincide with a lack of autonomy in others. In addition, better social participation does not necessarily correlate with higher HRQoL, or vice versa. Yet, more social participation was associated with more self-efficacy and independence. Our results emphasize that there is no standardized approach. Clinicians should take care to address all life areas in clinical practice to screen patients lived experiences and the need for social and self-management support.

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

BACKGROUND AND OBJECTIVESnEnd-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.nnnDESIGN AND PARTICIPANTSnA 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.nnnRESULTSnAgreement 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.nnnCONCLUSIONSnMaking 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.nnnAPPLICATION TO PRACTICEnThe 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.

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

PURPOSEnTo gain insight into the development of young persons with chronic conditions towards independence by comparing their lived experiences to those of their parents.nnnMETHODSnSemi-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 childs chronic condition. A paired thematic analysis was conducted.nnnRESULTSnParents 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.nnnCONCLUSIONnThe 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.

Agency in the twenty-first century: the emperor’s new clothes

Ideas about people with disabilities have evolved dramatically since the 1950s – from individuals ‘suffering from illness’ and dependent on others, to today’s credo stressing participation and social inclusion. People with a disability are considered to have capacities and bear responsibility to achieve active citizenship, which is positive in that a person’s capacities are addressed rather than their limitations. The focus on capacities stems from the Independent Living Movement that originated in the 1960s in the USA, advocating self-determination, self-respect and equal opportunities for people with disabilities. They demanded equal access to both the public domain and they requested assistance to enable their participation. As such, their early effort was to strive for agency. This article will explore changing and competing constructions of agency, participation and citizenship.

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 mixed-methods 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 2–4u2005years 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).

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

BACKGROUNDnIn 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.nnnMETHODSnData 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 Spearmans r. Significant variables were included in stepwise (logistic) regression analyses with transition outcomes as dependent variables.nnnRESULTSnThe 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%.nnnCONCLUSIONSnThe 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.

Motivational factors in discussing sexual health with young people with chronic conditions or disabilities

The objective of this study was to identify determinants of professionals’ intention to use the new board game SeCZ TaLK to facilitate sexual health discussions with young people with chronic health conditions and disabilities, and to gauge whether intention led to actual use. A cross-sectional web-based survey of 336 professionals before they received the game sought to measure their intention to use SeCZ TaLK, their attitudes towards discussing sexuality, social professional environment, self-efficacy, opinion on the feasibility of using the game and experience discussing sexuality. Actual use of SeCZ TaLK was assessed at follow-up (N = 105). Professionals with higher self-efficacy and more experience in discussing sexual health were more likely to intend to use the game. At follow-up, intention to use explained 21% of the variance in actual use. SeCZ TaLK fits easily into the daily practice of professionals working in assisted-living and day-care facilities; other professionals experienced greater difficulty integrating the game into their practice. Despite this, SeCZ TaLk was also used across a wide range of settings including in psycho-educational groups, group consultations in hospitals and group therapy in rehabilitation centres. Professionals appreciated the board game SeCZ TaLK, but actual use depended on their own motivation and skills and compatibility with work routines.

Skills for Growing Up-Epilepsy: An exploratory mixed methods study into a communication tool to promote autonomy and empowerment of youth with epilepsy

INTRODUCTIONnThe consequences of having epilepsy seriously hamper the development of autonomy for youth with epilepsy (YWE) and limit their social participation. This study was designed to provide insight into the impact of epilepsy on autonomy and empowerment and to evaluate the use of the Skills for Growing Up (SGU-Epilepsy) communication tool in pediatric epileptic care.nnnMETHODSnA mixed methods design was used to examine the impact of epilepsy on autonomy and empowerment and to evaluate the feasibility and use of the SGU-Epilepsy. Six focus groups with YWE and their parents were organized (Nu202f=u202f27), and the benefits of the SGU-Epilepsy were evaluated (Nu202f=u202f72).nnnRESULTSnYouth with epilepsy struggled with social participation. Beliefs of YWE and their parents on managing daily life and taking medication were not always similar. Parents worried about the passive attitude of YWE, but autonomy of YWE seemed to be constrained by parents. The SGU-Epilepsy seemed to be feasible. It facilitated the communication on development and empowerment although it was sometimes confronting for parents. Not all YWE were motivated to use and discuss the tool. In the evaluation, no differences in perceived autonomy and empowerment between YWE who used SGU-Epilepsy and received usual care appeared.nnnCONCLUSIONnOn the short-term, a beneficial effect of using the SGU-Epilepsy on autonomy and empowerment for YWE and their parents was not shown. The SGU-Epilepsy seemed to be a feasible instrument, however, to address nonmedical issues during pediatric consultations.

Ouder worden met een aangeboren aandoening

SamenvattingMensen met aangeboren lichamelijke aandoeningen hebben tegenwoordig een zo goed als normale levensverwachting. Daardoor groeit de groep vijftigplussers met zo’n aandoening. Hoe gaan zij om met de beperkingen die ze ondervinden? Welke aanpassings- strategieën gebruiken ze en aan welke ondersteuning hebben ze behoefte?