Value of an outpatient transition clinic for young people with inflammatory bowel disease: A mixed-methods evaluation

Objective: Developing and evaluating effective transition interventions for young people (16-25 years) with inflammatory bowel disease (IBD) is a high priority. While transition clinics (TCs) have been recommended, little is known about their operating structures and outcomes. This study aimed to gain insight into the value of a TC compared with direct handover care. Design: Controlled mixed-methods evaluation of process outcomes, clinical outcomes and patient-reported outcomes. Setting: Two outpatient IBD clinics in the Netherlands. Participants: Data collection included: semistructured interviews with professionals (n=8), observations during consultations with young people (5×4 hours), medical chart reviews of patients transferred 2 to 4 years prior to data collection (n=56 in TC group; n=54 in control group) and patient questionnaires (n=14 in TC group; n=19 in control group). Outcomes: Data were collected on service structures and daily routines of the TC, experienced barriers, facilitators and benefits, healthcare use, clinical outcomes, self-management outcomes and experiences and satisfaction of young people with IBD. Results: At the TC, multidisciplinary team meetings and alignment of care between paediatric and adult care providers were standard practice. Non-medical topics received more attention during consultations with young people at the TC. Barriers experienced by professionals were time restrictions, planning difficulties, limited involvement of adult care providers and insufficient financial coverag

Effective peer-to-peer support for young people with end-stage renal disease: a mixed methods evaluation of Camp COOL

__Abstract__ __Background__ The Camp COOL programme aims to help young Dutch people with end-stage renal disease (ESRD) develop self-management skills. Fellow patients already treated in adult care (hereafter referred to as ‘buddies’) organise the day-to-day program, run the camp, counsel the attendees, and also participate in the activities. The attendees are young people who still have to transfer to adult care. This study aimed to explore the effects of this specific form of peer-to-peer support on the self-management of young people (16–25 years) with ESRD who participated in Camp COOL (CC) (hereafter referred to as ‘participants’). __Methods__ A mixed methods research design was employed. Semi-structured interviews (n = 19) with initiators/staff, participants, and healthcare professionals were conducted. These were combined with retrospective and pre-post surveys among participants (n = 62), and observations during two camp weeks. __Results__ Self-reported effects of participants were: increased self-confidence, more disease-related knowledge, feeling capable of being more responsible and open towards others, and daring to stand up for yourself. According to participants, being a buddy or having one positively affected them. Self-efficacy of attendees and independence of buddies increased, while attendees’ sense of social inclusion decreased (measured as domains of health-related quality of life). The buddy role was a pro-active combination of being supervisor, advisor, and leader. __Conclusions__ Camp COOL allowed young people to support each other in adjusting to everyday life with ESRD. Participating in the camp positively influenced self-management in this group. Peerto- peer support through buddies was much appreciated. Support from young adults was not only beneficial for adolescent attendees, but also for young adult buddies. Paediatric nephrologists are encouraged to refer patients to CC and to facilitate such initiatives. Together with nephrologists in adult care, they could take on a role in selecting buddies

Voorbij zelfredzaamheid: maatwerk voor mensen met lichamelijke beperkingen.

Inleiding Het bieden van maatwerk in zorg en ondersteuning gericht op zelfredzaamheid en participatie is één van de drie centrale doelstellingen van de nationale ontwikkelagenda ‘Volwaardig meedoen 2016-2018’. Als het gaat om zelfredzaamheid en participatie, wordt er veel van mensen zelf verwacht. Veel mensen kunnen echter niet aan deze verwachtingen voldoen. Passende ondersteuning is dan nodig. Onderzoek laat zien dat om zelfredzaam te kunnen zijn, gevoelens van competentie (vermogen) en controle (eigen regie) een belangrijke rol spelen. Hierover zijn nog veel onduidelijkheden als het gaat om (verschillen in) zelfredzaamheid van mensen met lichamelijke beperkingen. De Wetenschappelijke Raad voor het Regeringsbeleid (WRR) pleit voor een realistisch perspectief op (zelf)redzaamheid, waarbij aandacht is voor verschillen tussen mensen. Het hebben van kennis over iets (weten) hoeft namelijk niet altijd tot gewenst gedrag te leiden (doen). Dit onderzoek In dit onderzoek wordt getracht meer inzicht te verkrijgen in de verschillen tussen mensen met lichamelijke beperkingen als het gaat om ervaren zelfredzaamheid en gevoel van eigen regie en hoe deze gerelateerd zijn aan het leven dat zij leiden en de zorg en ondersteuning die zij (nodig) hebben. De ervaringen van mensen zijn hierbij het uitgangspunt en de volgende vragen staan centraal: 1. Hoe hangen ervaren zelfredzaamheid en gevoel van eigen regie van mensen met lichamelijke beperkingen samen? 2. Hoe is de gezondheids- en leefsituatie van mensen met lichamelijke beperkingen gerelateerd aan de mate van ervaren zelfredzaamheid en gevoel van eigen regie van deze mensen? 3. Hoe verhouden het gebruik en de behoefte aan zorg en ondersteuning van mensen met lichamelijke beperkingen zich tot de mate van ervaren zelfredzaamheid en gevoel van eigen regie van deze mensen? Resultaten Ervaren zelfredzaamheid en gevoel van eigen regie hoeven niet altijd samen te gaan. Er blijkt een grote diversiteit te zijn tussen mensen. Grofweg kunnen we vier groepen mensen onderscheiden die van elkaar verschillen op ervaren zelfredzaamheid (vermogen) en gevoel van eigen regie (controle). In dit onderzoek is nagegaan wie de mensen in deze vier groepen zijn, zodat ze in de praktijk beter herkend kunnen worden en er meer passende ondersteuning geboden kan worden. De eerste is de groep ‘ondersteunde volgers’. Dit zijn mensen die weinig vermogen (zelfredzaamheid) en weinig controle (eigen regie) ervaren vergeleken met de andere groepen. De tweede groep bestaat uit mensen die juist hoog scoren op zelfredzaamheid en eigen regie, de ‘zelfredzame beslissers’. De derde groep mensen ervaart relatief veel vermogen, maar weinig controle. Dit zijn de ‘zelfredzame volgers’. De laatste is de groep ‘ondersteunde beslissers’. Dit zijn mensen die minder zelfredzaam zijn, maar wel de regie in eigen hand hebben. De vier groepen verschillen van elkaar als het gaat om ernst van de beperking, tevredenheid met (verschillende aspecten van) het leven, maatschappelijke participatie, eenzaamheid, het ervaren van depressieve symptomen en zorg- en ondersteuningsbehoefte. Hierbij valt op dat de zelfredzame beslissers het meest positief scoren op alle genoemde uitkomstmaten, terwijl de ondersteunde volgers in vergelijking met de hele groep de meeste moeite hebben met het omgaan met hun beperkingen in het leven. De andere twee groepen zitten er tussenin. In alle groepen zitten mensen die behoefte hebben aan extra zorg of ondersteuning. Conclusie Verschillen op ervaren zelfredzaamheid en gevoel van eigen regie hangen samen met de gezondheids- en leefsituatie en zorg- en ondersteuningsbehoefte van mensen met lichamelijke beperkingen. Passende ondersteuning bieden is een complexe taak, omdat deze ondersteuning verschilt per cliënt en niet op voorhand gedefinieerd kan worden. De vraag ‘wat is passende ondersteuning en voor welke cliënt?’ kan dus niet zondermeer beantwoord worden. De vraag ‘wat is passende ondersteuning in de beleving van de cliënt niet?’ daarentegen wel. Dit onderzoek laat namelijk zien dat passende ondersteuning niet perse gericht hoeft te zijn op het bevorderen van het ‘zelf kunnen doen’. Concreet betekent dit dat ondersteuning voor mensen die minder zelf kunnen doen (minder zelfredzaam zijn) niet perse op het bevorderen van zelfredzaamheid gericht hoeft te zijn, maar beter gericht kan zijn op het ondersteunen van sociale participatie. Ook bij mensen die minder controle ervaren over hun eigen zorg of leven, lijkt ondersteuning gericht op het bevorderen van zelfredzaamheid niet altijd passend. Hier zou de nadruk meer moeten liggen op het versterken van eigen regie. Maatwerk vraagt om een focus voorbij zelfredzaamheid

“We know what we are talking about”: experiences of young people with a chronic condition involved in a participatory youth panel and their perceived impact.

Background There is a growing recognition that research and implementation projects should be carried out “with” or “by” young people with chronic conditions, instead of “about” or “for” them. Aim The current study aimed to explore how young people with chronic conditions experience their involvement in a participatory youth panel. This panel was a structural part of a three-year program addressing the social position of young people with chronic conditions in the Netherlands. It hosted 45 research and implementation projects to improve the social position of young people with chronic conditions in five areas: care, school, work, sport, and personal strength. Output from these projects were, for example, a tool to improve self-management, an evidence-based method to facilitate the transition to adult-care, and a digital platform about performing physical activity with a disability. Method During the program, six focus groups consisting of four to eleven panel members were conducted. The transcripts were analysed using the principles of thematic analysis. Results The results show panel members took part in multiple projects and activities, such as assessing project applications, evaluating the progress of projects and organizing a political lobby. They were enthusiastic about their role in the panel. The structural nature of the panel enabled them to achieve personal growth and professionalization of their participation. Consequently, panel members experienced an increasing impact on the program and separate projects, and on national politics. Suggestion Therefore, it is suggested that a structural form of participation, such as a participatory panel, is suitable to facilitate meaningful participation of young people with chronic conditions

"We Know What We Are Talking about": Experiences of Young People with a Chronic Condition Involved in a Participatory Youth Panel and Their Perceived Impact

There is a growing recognition that research and implementation projects should be carried out "with" or "by" young people with chronic conditions, instead of "about" or "for" them. The current study aimed to explore how young people with chronic conditions experience their involvement in a participatory youth panel. This panel was a structural part of a three-year program addressing the social position of young people with chronic conditions in the Netherlands. It hosted 45 research and implementation projects to improve the social position of young people with chronic conditions in five areas: care, school, work, sport, and personal strength. Output from these projects were, for example, a tool to improve self-management, an evidence-based method to facilitate the transition to adult-care, and a digital platform about performing physical activity with a disability. During the program, six focus groups consisting of four to eleven panel members were conducted. The transcripts were analysed using the principles of thematic analysis. The results show panel members took part in multiple projects and activities, such as assessing project applications, evaluating the progress of projects and organizing a political lobby. They were enthusiastic about their role in the panel. The structural nature of the panel enabled them to achieve personal growth and professionalization of their participation. Consequently, panel members experienced an increasing impact on the program and separate projects, and on national politics. Therefore, it is suggested that a structural form of participation, such as a participatory panel, is suitable to facilitate meaningful participation of young people with chronic conditions

Patterns of social participation among older adults with disabilities and the relationship with well-being: A latent class analysis

Aim: Living with a chronic condition or a disability at older age impacts social participation. Social connections and social activities seem interrelated leading to heterogeneous patterns in social participation. The aim of this study was to identify a typology in social participation among older adults with disabilities, and to relate this typology to their background characteristics and well-being measures. Methods: A total of 1775 older adults with disabilities or chronic conditions aged 65-97 were sampled from a nationwide panel study in the Netherlands. Social participation was assessed by various measures related to social connections, social informal activities, voluntary work, effort to increase social participation, and online social participation. A latent class analysis was carried out to identify a typology of social participation. Differences between these classes were explored with multinomial regression analyses and pairwise comparisons. Results: Four classes were found: social withdrawers (22.5%, n = 399), proximate social dwellers (14.5%, n = 257), moderately active social dwellers (37.2%, n = 660) and pro-active social dwellers (25.9%, n = 459). Background characteristics, such as living alone and severity of disability, differed significantly among classes. Regarding well-being measures, it appeared that pro-active social dwellers had the most positive scores. Social withdrawers were most prone to reduced life satisfaction and health related quality of life and increased loneliness and experienced participation restrictions. Conclusions: A typology with four patterns based on a wide spectrum of social participation aspects in older adults with disabilities was identified. This typology may help to assess the risk for reduced well-being of older adults with disabilities