Sander R Hilberink

Sander R Hilberink
Hogeschool Rotterdam | HR · Research Center Innovations in Care

PhD
Studying the cross-domain health and support needs of adults with lifelong disabilities

About

90
Publications
16,927
Reads
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1,496
Citations
Introduction
Working from different perspectives (eg, Disability Studies, Psychology and Medicine) to improve healthcare for and life of adults ageing with long-term disabilities. If it doesn't go right, go left.
Additional affiliations
October 2019 - present
Hogeschool Rotterdam
Position
  • Lector Ondersteuningsbehoeften: Levenslang & Levensbreed
January 2009 - September 2019
Hogeschool Rotterdam
Position
  • Senior Researcher
March 2006 - June 2019
Erasmus MC
Position
  • Senior Researcher

Publications

Publications (90)
Article
Full-text available
The aim of this cross-sectional study is (1) to describe the socio-demographic characteristics of students with relatives with problematic substance use and to examine differences between students with and without relatives with problematic substance use in (2) health, (3) substance use and (4) study success. We analyzed these differences in bivari...
Preprint
Objective To gain insight into perinatal outcomes in women with chronic conditions, in order to contribute to the optimization of personalized perinatal care. Design Population-based study using data of the Dutch national perinatal registry between 2010-2019. Setting Nationwide. Population Pregnancies of women who were diagnosed with chronic medica...
Article
Full-text available
Inclusion for all is an essential theme in current societies, but less so in care. In 2017, Briggs and Harris argued for more debate about the meaning of the concept of inclusion in different settings, including health care practices. The question of this paper is how professionals in long-term care can address inclusion and contribute to more incl...
Article
Full-text available
Background: Adults with cerebral palsy (CP) may experience an increasing impact of their disability on daily life and this may interfere with their citizenship. Citizenship is a layered construct. Next to formal and theoretical significations, and civil rights acts such as the UN Convention on the Rights for Persons with Disabilities (CRPD), the me...
Article
This commentary is on the original article by Whitney and Basu on pages 853–859 of this issue.
Book
This book focuses on young people (12-25 years old) growing up with a chronic somatic condition and/or physical disability, facing different challenges during their transition to adulthood and to adult healthcare services. Becoming an adult often proves extra challenging for them, because the adaptive tasks related to living with a chronic conditio...
Article
Full-text available
Aim To examine the most relevant aspects of functioning of adults with cerebral palsy (CP) from their perspective, in order to develop an International Classification of Functioning, Disability and Health (ICF) Core Set for adults with CP. Method We conducted six focus group discussions with adults with CP without intellectual disability and seven...
Chapter
Although youth with chronic conditions have the same developmental challenges as their typical developing peers, they encounter additional bumps in the road towards adulthood because of their chronic condition. Therefore, it is important to support them in acquiring life skills (e.g. related to autonomy and participation) to be better equipped to f...
Chapter
This chapter introduces the core concepts of this volume, entitled Self-Management of Young People with Chronic Conditions. A Strength-Based Approach for Empowerment and Support. We critically discuss definitions related to self-management and empowerment of young people with chronic conditions, such as: chronic disease, healthcare transition, self...
Book
Full-text available
Willem (spina bifida) is met vervroegd pensioen en ervaart dat invulling geven aan het dagelijks leven niet vanzelf gaat. Helga (ernstige vorm van reuma) gebruikt al 27 jaar een rolstoel, maar moet nog steeds bewijzen dat ze niet kan lopen. Een vrouw met cerebrale parese wil graag een kind en zich laten insemineren met donorzaad, maar haar verzoek...
Article
Full-text available
De auteurs van dit artikel houden een pleidooi voor verschuiving van revalidatie gericht op een individu met een aandoening of beperking naar revalidatie gericht op disability, zoals gedefinieerd vanuit het sociaal model. Hiermee wordt de revalidatieprofessional medestander van de revalidant en denkt oplossingsgericht mee over hoe om te gaan met de...
Article
Full-text available
Purpose: Youth with disabilities face challenges regarding achieving autonomy. The 'Skills for Growing Up' tool was adapted for use in Dutch pediatric rehabilitation (SGU-D) to support development of autonomy. This study presents the experiences with the SGU-D tool. Methods: The SGU-D was implemented in 18 settings, of which 4 participated in th...
Article
Full-text available
Objective: To describe the epidemiology of health status, impairments, activities and participation in adults with cerebral palsy (CP). Data sources: Embase, Medline, Web-of-Science, PsycINFO, CINAHL, Cochrane and Google Scholar were searched for three themes ('cerebral palsy', 'adult', and 'outcome assessment') in literature published between J...
Article
Background: There is little focus on adults with cerebral palsy (CP) in research and health care and insufficient knowledge on how to identify and manage pain in this population. Objectives: This systematic review and meta-analysis aimed to determine whether pain prevalence in adults with CP is high and to explore variations in pain prevalence o...
Article
Full-text available
Purpose: Employment of young adults with chronic physical conditions entering the labor market after finishing post-secondary education remains behind compared to typically developing peers. The aim of this study is to evaluate changes in their paid employment levels after following a vocational rehabilitation intervention (‘At Work’). Materials an...
Article
Aim: To determine the long-term development of autonomy in participation of individuals with cerebral palsy (CP) without intellectual disability. Method: Individuals with CP (n=189, 117 males, 72 females; mean age [SD] 21y 11mo [4y 11mo], range 12-34y); were assessed cross-sectionally (46%) or up to four times (54%), between the ages of 12 and 3...
Article
In de wetenschappelijke literatuur is geen casuïstiek te vinden over de inzet van sekszorg (de populaire benaming van sociaal-erotische zorg) voor mensen met een (lichte) verstandelijke beperking. Deze casus wil bijdragen aan het vullen van deze leemte. De casus is een voorbeeld van het ombuigen van seksueel grensoverschrijdend gedrag naar een posi...
Article
Full-text available
This article relates the eight Guiding Principles of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) to both liberal and relational perspectives on autonomy and different layers of citizenship. While the UNCRPD covers a broad scope of citizenship, accounting for liberal and relational values of autonomy, it appears...
Article
Introduction: The 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...
Article
Objective: To determine neurological outcome in children and youth with acquired brain injury (ABI) and explore associated factors. Design: Cross-sectional study, two-years post-injury. Patients: Hospital-based sample (n=112) aged 6-22 years. Methods: Neurological outcome and participation were assessed with a multidimensional neurological examinat...
Article
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 cond...
Article
Full-text available
Mensen 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?
Article
Objective: To describe longitudinal change in perceived health, presence of health issues and functional level in adults with cerebral palsy (CP). Design: Prospective cohort study. Setting: Participants who completed baseline assessments in 1996 or 2000 were invited for a long-term follow-up in 2010. Participants: Forty-nine Dutch adults wit...
Article
Background: More attention and understanding of the health and participation problems of adults with early and later onset disabilities in the Netherlands is needed. Objective: To explore health/participation problems and unmet needs in adults aged ≥40 years with long-term disabilities and their relationship with the time of onset. Methods: Pa...
Article
Full-text available
The aim of the study was to gain insight into use of a new board game (SeCZ TaLK) to facilitate discussing sexual health with adolescents with chronic conditions in healthcare and special education, and to establish impeding and facilitating factors for using the game. In a cross-sectional mixed-methods study, the use of SeCZ TaLK in daily practice...
Article
Full-text available
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 c...
Book
In dit boek vind je informatie en tips over hoe je zo goed mogelijk kunt omgaan met het proces van ouder worden met je beperking. Met aandacht voor fit en gezond blijven: omgaan met vermoeidheid en chronische pijn, slapen, medicatie, voeding, bewegen, valpreventie. En ook: hoe zorg je goed voor jezelf, zodat je voldoende veerkracht ontwikkelt en je...
Article
Objective: To determine health-related quality of life (HRQoL) in children and youth with acquired brain injury (ABI) two years post-injury and explore associated factors. Design: Cross-sectional. Subjects: Children and youth (n = 72; aged 6-22 years) with mild to severe ABI (87% mild). Methods: The primary outcome measures self-reported and...
Article
Full-text available
Opgroeien met epilepsie stelt kinderen en jongeren voor extra uitdagingen op hun weg naar zelfstandigheid. Hierdoor bereiken zij minder vaak of later belangrijke mijlpalen in hun ontwikkeling. Een instrument om zelfstandigheid en autonomie bij jongeren met epilepsie te ondersteunen is de Epilepsie Groei-wijzer.
Article
Full-text available
http://www.socialevraagstukken.nl/site/2015/03/16/ervaring-van-de-patient-is-voetnoot-in-de-zorg
Chapter
Transition to adulthood and adult rehabilitation care
Article
Full-text available
Hilberink SR, Jacobs JE. Hoe betrouwbaar is zelfrapportage van het rookgedrag bij COPD? Huisarts Wet 2014;57(7):348-50. Stoppen met roken is een cruciaal onderdeel van het behandelbeleid bij COPD: het vertraagt de achteruitgang van de longfunctie en het verbetert de prognose. Maar ondanks de overduidelijke relatie tussen roken en longklachten lukt...
Article
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 li...
Article
End-stage kidney disease (ESKD) may interfere with children's 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 w...
Article
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 rece...
Chapter
Transition to adulthood and adult rehabilitation care
Article
Typical 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. Adolescents with various chronic conditions participat...
Thesis
Full-text available
http://repository.ubn.ru.nl/bitstream/2066/112255/1/112255.pdf
Article
Full-text available
Unlabelled: Abstract Aim: To describe the occurrence and causes of acquired brain injury (ABI), including traumatic brain injury (TBI) and non-traumatic brain injury (NTBI), among Dutch youth and estimate incidence rates from the data. Patients: Aged 1 month-24 years, hospital diagnosed with ABI in 2008 or 2009. Methods: In three major hospita...
Article
Abstract 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 per...
Article
Full-text available
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...
Article
For chronic obstructive pulmonary disease (COPD), smoking cessation is the main treatment goal. We examined compliance with a smoking cessation treatment protocol for COPD smokers by 47 general practitioners (GPs). Baseline and evaluation questionnaires were completed, and 34 of the GPs then took part in a semi-structured telephone interview. The m...
Article
The majority of children treated in pediatric rehabilitation reach adulthood and develop into individuals with needs concerning sexuality and intimate relationships. However, because sexual health is rarely addressed during rehabilitation, some of these youngsters have unmet needs regarding the development of romantic and sexual relationships, and...
Article
To investigate the prevalence and co-occurrence of chronic pain, fatigue, and depressive symptoms in adults with spastic bilateral cerebral palsy (SBCP) and explore associations of chronic pain and fatigue with depressive symptoms and daily functioning. Fifty-six adults with SBCP without severe cognitive impairment participated (35 males, 21 female...
Article
Full-text available
Background Teenagers with physical disabilities are challenged in achieving autonomy. In Canada, an instrument has been developed for young persons aged 7-21 years to support autonomy development and participation. Aim To test the feasibility and efficacy of the Dutch version of Skills for Growing Up (dSGU). Methods An expert panel drafted a pilo...
Conference Paper
Full-text available
AIMS: To study professional-related determinants of the intention to use a board game SeCZ TaLK to facilitate the discussion of sexual health in care and education. BACKGROUND: Professionals in care and education often feel unprepared to discuss sexual health topics with adolescents with chronic conditions or disabilities. They acknowledge the im...
Article
Full-text available
The objective is to explore the effectiveness of providing patient-reported feedback to stimulate dental professionals to adhere to guidelines for the treatment of tobacco addiction. We use three independent patient samples with intervals of 6 and 18 months. The study concerns twenty-three primary care general dental practices in the Netherlands. W...
Article
Full-text available
Objective. Transition of care is a big challenge for pediatrics. In the Netherlands not much is known about preparation for transition, transfer policies and collaboration with adult care. Objective of this research was to gather insight into current transitional practices and into the felt necessity for improvement of adolescent care.Methods. Cros...
Article
Traumatic brain injury (TBI) is in the developed countries the most common cause of death and disability in childhood. The purpose of this study is to estimate the incidence of TBI for children and young people in an urbanised region of the Netherlands and to describe relevant characteristics of this group. Patients, aged 1 month - 24 years who pre...
Article
Full-text available
In a controlled study, primary care dental professionals in the intervention group were encouraged to provide smoking cessation advice and support for all smoking patients with the help of a stage-based motivational protocol. The barriers and facilitators reported by the dental professionals on two occasions for their efforts to incorporate smoking...
Article
To evaluate two counseling programs in general practice to help smokers with chronic obstructive pulmonary disease (COPD) to quit smoking. Cluster randomized controlled trial including 68 general practices (667 patients) using a randomly assigned intervention program with counseling and advice about nicotine replacement therapy (and additional bupr...
Article
Full-text available
Doel: In deze studie is de toepasbaarheid van en de waardering voor een nieuw educatief bordspel (SeCZ TaLK) onderzocht dat de communicatie over seksualiteit en intieme relaties bevordert onder jongeren met chronische aandoeningen. Methoden: Er werden pilots gespeeld met 85 jongeren met een chronische aandoe‐ ning of beperking op drie mytylscholen,...
Article
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) wi...
Article
Full-text available
The present study reports on the biochemical validation of the self-reported smoking status of patients with chronic obstructive pulmonary disease (COPD). The objective is to establish the proportion of overestimation of self-reported success rates. A cross-sectional smoking-status validation study including 60 patients with COPD who reported that...
Article
Full-text available
Doel. Transitie in zorg van jongeren met chronische aandoeningen is een grote uitdaging voor de kindergeneeskunde, maar in Nederland is nog weinig bekend over hoe voorbereiding op tran- sitie, overdracht en samenwerking met de volwassenenzorg plaatsvindt. Doel van dit onderzoek was inzicht te krijgen in de stand van zaken ten aanzien van transitie...
Article
Full-text available
Smoking influences oral health in several ways (such as the occurrence of periodontitis, teeth discolouration and oral cancer); therefore, smoking behaviour should be addressed in dental care. Dentists can play a role in primary and secondary prevention of tobacco dependence. They see their patients repeatedly over time. This study investigates whe...
Article
This study evaluated the feasibility and appreciation of a new educational board game (SeCZ TaLK) that stimulates communication on sexuality and intimate relationships in youth with chronic conditions. 85 adolescents with chronic conditions or disabilities piloted the board game in three rehabilitation centers/schools for the disabled, one outpatie...
Article
Full-text available
To investigate determinants of the provision of smoking cessation advice and counselling by various dental professionals in the dental team (dentists, dental hygienists and prevention auxiliaries). Cross-sectional design. Sixty-two general dental practices in the Netherlands. Multivariate logistic analyses of self-reported counselling behaviour col...
Article
Full-text available
To determine the prevalence of motor impairments and activity limitations and their inter-relationships in Dutch children with spastic cerebral palsy. In a population-based survey 119 children, age range 6-19 years, with spastic cerebral palsy were examined. Anthropometry, muscle tone, abnormal posture, joint range of motion, major orthopaedic impa...
Chapter
Full-text available
Het stimuleren van de economische zelfstandigheid van mensen met een chronische aandoening of beperking is de afgelopen jaren een hot issue geworden. Met name de Wajongers stonden ineens op het politieke netvlies. Herinneringen aan de WAO-crisis begin jaren negentig van de vorige eeuw drongen zich op. Het vooruitzicht dat Nederland binnen tien tot...
Article
Full-text available
Smoking may cause periodontal diseases and raises the chance of getting oral cancer. The Dutch Guideline for the Treatment of Tobacco Addiction recommends that dental professionals explicitly advise all patients who smoke to stop smoking. In 12 dental practices a study was made of how the guidelines could be implemented. The strategy consisted of a...
Article
Full-text available
Roken kan leiden tot parodontale aandoeningen en verhoogt de kans op mondkanker. De nationale ‘Richtlijn Behandeling Tabaksverslaving’ beveelt aan dat tandheelkundige zorgverleners alle rokende patiënten actief een stopadvies geven. In 12 tandartspraktijken werd onderzocht hoe deze richtlijn kan worden geïmplementeerd. De implementatiestrategie bev...
Article
Full-text available
To obtain better insight into the health issues of young adults with cerebral palsy. Cross-sectional. Two data sources were used: 54 adults with cerebral palsy (age range 25-36 years) and 48 physicians (members of the Netherlands Society of Physical and Rehabilitation Medicine). Adults with cerebral palsy participated in a physical examination and...
Article
Objective: Psychometric research in the field of alcohol dependence has concentrated on identifying certain (personality) characteristics (i.e. typologies). This paper is aimed to identify such typologies and studies the relation of the Minnesota Multiphasic Personality Inventory-2 (MMPI-2) and Cloninger’s temperament-character inventory (TCI). Met...