Christine Dedding

• Professor
• Professor at Amsterdam UMC

Chronic sorrow involves parents’ enduring grief due to their child’s disability. This stems not only from the recurring painful reality parents face, which differs from the life they had hoped for their children, families, and themselves but from also being confronted with societal and personal norms and expectations they cannot meet. There is a la...

Samenvatting Beleidsmakers en fondsen verwachten in toenemende mate dat burgers actief betrokken worden bij onderzoek, beleidsontwikkeling en interventieontwikkeling. Deze groeiende populariteit vereist dat we scherp blijven op de conceptualisering van participatie: bedoelen en beogen we (nog) hetzelfde met participatie? Aan de hand van literatuur...

Care-dependent people are increasingly expected to actively participate in an accelerating society. This metasynthesis provides insight into how contemporary society complicates the pathways to self-actualization for disadvantaged young people. Giddens’ concept of self-identity was used to analyze the experiences of disadvantaged young people in th...

Responding to labor shortages and rising healthcare expenses, hospitals increasingly turn to self-check-in kiosks to streamline service delivery and improve patients’ experiences. The purpose of this study was to reflect on the implementation of these self-check-in kiosks in a Dutch university hospital, particularly in relation to access to care fo...

Background Standardization of health systems often hinders client‐centered care. This study investigates whether allowing more flexibility in the planning range of the Dutch home‐based postpartum care service improves its quality of care, as innovative approach to client‐centered care. Methods A randomized controlled trial was conducted (2017–2019...

Background Families’ understanding towards oral health problems among young children is poorly studied. More insight into parents’ experiences, especially of those living in disadvantaged neighbourhoods, is needed to address persistent oral health inequalities. This qualitative study aims to explore parental perspectives on children’s oral health (...

The COVID‐19 pandemic deeply affected the lives of children and young people; studies report adverse effects on mental, physical, and social well‐being. However, the impact of the pandemic on obesity care for children received little attention. The aim of this study was to gain insight into the challenges youth healthcare nurses experienced and to...

Elf fabels over digitale inclusie die kansenongelijkheid vergroten en een goede oplossing in de weg staan We leven in een snel digitaliserende samenleving die de gezondheid en het welzijn van mensen beïnvloedt. De verhalen die we elkaar vertellen over de kansen van digitalisering spelen een belangrijke rol in hoe we met mensen omgaan, en hoe we (on...

The importance of engaging children and adolescents in research is increasingly acknowledged. The aim of this scoping review is to explore how children and young people have been engaged in research on paediatric obesity and which issues they have reported, in order to highlight areas that require further inquiry or action by researchers and health...

In our increasingly paced society, a lot is expected from care-dependent people. In the Netherlands, everyone is expected to live independently with the help of their social network, but this has proven challenging. In the participatory action research project TOSKoploper, young adults with developmental language disorder (DLD) opened up about thei...

Aim To investigate the perspectives of Dutch care professionals, parents and experts by experience on gender dynamics in paediatric type 1 diabetes care. Design Qualitative research design. Methods Fifteen semi‐structured interviews were held with care professionals, supplemented by two focus groups with parents of children with diabetes (n = 12...

Participatory action research (PAR) is a form of community-driven qualitative research which aims to collaboratively take action to improve participants’ lives. This is generally achieved through cognitive, reflexive learning cycles, whereby people ultimately enhance their wellbeing. This approach builds on two assumptions: (1) participants are abl...

Background Oral health promotion interventions have had limited success in reaching families in disadvantaged neighbourhoods resulting in persistent oral health inequality. This qualitative study provides insight into professionals’ perspectives on children’s poor oral health (≤ 4 years), their perceptions of the roles and responsibilities, and opp...

De online wereld wordt steeds groter. Het weerbericht, treintijden, het nieuws, communiceren met de overheid, ontspannen, winkelen, werken, sociaal contact, toegang tot informatie en (gezondheids)zorg, contact met school en de sportclub, alles gaat online. Maar niet voor iedereen. In de boekje geven we een inkijkje in de ICT-levensloop van mensen v...

Participatory Action Research (PAR) brings unique ethical challenges. Scholars have developed seven ethical principles to address these challenges. So far, little has been published on how these ethical principles (are put to) work in different fields. We used the principles to evaluate our collaboration with co-researchers with developmental langu...

Tien belangrijke lessen van meiden op de open en gesloten groep: een participatief onderzoek naar de mening van meiden over de kwaliteit van zorg en welzijn.

Digital inequality is a critical issue in our knowledge economy. Often digital inequality is framed as a problem that only older people encounter. This rather stereotypical portrayal can result in improvised and unsuccessful policy actions. The goal of the article is to take the experiences of citizens who never or seldom use information and commun...

The use of vlogs is promising in participatory action research (PAR) that aims to enhance the health and well-being of citizens. Vlogs have the potential to reach a wide audience, transcending the local scale of PAR. This article aims to explore the value of co-creating vlogs by investigating two exploratory studies involving adolescents and women...

Background: A growing body of evidence suggests the positive impact of arts on health and wellbeing. The mechanisms underlying the impact however, remain overlooked. Methods: 38 Semi-structured interviews were held with 30 older adults and 10 artists, involved in five participatory art projects in the Netherlands. Case-based framework and cross-...

The paper presents an alternative conceptualization of participation in order to offer legitimation and guidance for (new) scholars, policymakers and citizens, and to prepare them for the work that needs to be done to develop genuine participation practices that bring about positive change. Metaphors like the participation ladder not only explain a...

Blog on the James Lind Alliance website https://www.jla.nihr.ac.uk/news/involving-children-in-setting-the-priorities-for-research-in-pediatric-diseases/28944

Plain English summary Unfortunately, citizens living in vulnerable circumstances are seldom engaged in research or policymaking. Think of, citizens living in poverty, those with an ethnic minority background or citizens with mental health issues are often excluded. Their involvement is, however, crucial to prevent growing (health) inequalities. To...

Background Several health research agendas have successfully been developed with adults but rarely with children. Children are still seldom recognized as possessing credible knowledge about their own body and life. The objective is to understand the research priorities of Dutch children with juvenile idiopathic arthritis (JIA), within a nationwide...

An emerging body of research indicates that active arts engagement can enhance older adults’ health and experienced well-being, but scientific evidence is still fragmented. There is a research gap in understanding arts engagement grounded in a multidimensional conceptualization of the value of health and well-being from older participants’ perspect...

Veel mensen kunnen niet aanhaken bij de e-participatiesamenleving. Juist de mensen die gebaat zijn bij goede informatieverstrekking en dienstverlening raken daardoor (nog meer) uit beeld en op achterstand. Dit boekje geeft antwoord op de vragen: Hoe komt het dat niet iedereen gebruik kan maken van het internet? Hoe ziet het hulpaanbod eruit en hoe...

Objective : To explore mothers’ perspectives and experiences when facilitating greater flexibility in the planning range of home-based postpartum care, as an innovative tool to more client-centred care. Design : A qualitative study design with semi-structured in-depth interviews. Setting : The study was executed in collaboration with a postpartum...

Background Involving the end-users of scientific research (patients, carers and clinicians) in setting research priorities is important to formulate research questions that truly make a difference and are in tune with the needs of patients. We therefore aimed to generate a national research agenda for Juvenile Idiopathic Arthritis (JIA) together wi...

Objective Diane Forsythe and other feminist scholars have long shown how system builders’ tacit assumptions lead to the systematic erasure of certain users from the design process. In spite of this phenomena being known in the health informatics literature for decades, recent research shows how patient portals and electronic patients health records...

Het uitdelen van laptops is nog steeds belangrijk. Samen met de gemeente Amsterdam hebben we geleerd hoe je dit succesvol kunt doen.

Objective Adolescent engagement in decision‐making processes in health care and research in the field of chronic respiratory diseases is rare but increasingly recognized as important. The aim of this study was to reflect on adolescents' motives and experiences in the process of establishing an advisory council for adolescents with a chronic respira...

Background: Involving the end-users of scientific research (patients, carers and clinicians) in setting research priorities is important to formulate research questions that truly make a difference and are in tune with the needs of patients. We therefore aimed to generate a national research agenda for Juvenile Idiopathic Arthritis (JIA) together w...

Background Involving the end-users of scientific research (patients, carers and clinicians) in setting research priorities is important to formulate research questions that truly make a difference and are in tune with the needs of patients. We therefore aimed to generate a national research agenda for Juvenile Idiopathic Arthritis (JIA) together wi...

In the Netherlands, thirteen organizations offer specialized care services for commercially and sexually exploited (CSE) girls who are underage. Quality and effectiveness of these services have only sparsely been evaluated, while existing quantitative measures of treatment success mainly include the perspective of professionals. As a result, minima...

Objective : To clarify the concept of maternal self-care in the early postpartum period and to develop a conceptual framework of mothers’ self-care needs. Design : An integrative review concept analysis method was used as described by Whittemore and Knafl (2005). As part of this data analysis process, a matrix based on Orem's self-care theory was...

Objective : To explore care workers’ experiences with a flexible planning of home-based postpartum care as an innovative instrument to facilitate more client-centred care. Design A mixed-methods design with a primarily qualitative approach followed by a quantitative follow-up, according to the Priority-Sequence model. Setting This study is part o...

The popularity of Participatory Action Research (PAR) increases the risk of tokenism and blurring the boundaries of what might be considered ‘good’ PAR. This became a pressing issue when we were invited by the City of Amsterdam to conduct PAR on digital inequality with vulnerable citizens in Amsterdam, within serious constraints of time and budget....

Nowadays, the question no longer is whether children should participate in the decision-making process of issues that affect their lives; the focus lies, instead, on how to ensure that children can participate in a meaningful way. Participation in child protection proceedings has proved difficult to achieve. Where children indicate that the attitud...

Background: Although healthcare professionals often consider body weight a sensitive and difficult topic to discuss with children, a contextualized and comprehensive understanding of youth perspectives on weight-related words used in healthcare has yet to be established. This qualitative study aims to explore perspectives of Dutch children on the...

The Digital Divide is commonly associated with those parts of the world where access to Internet and Web is poor or lacking. However, even in places such as the city of Amsterdam, where Internet infrastructure and access are commonplace, a Digital Divide exists. A significant part of the population (1 out of 5) is currently de facto excluded, for a...

There is limited knowledge about key factors that enable adolescent girls with a low socioeconomic position (SEP) to adopt a healthy lifestyle. This paper aims to better understand the complexity of addressing health behaviour of adolescent girls with a low SEP by gaining insights into (i) the perspectives of adolescent girls with a low SEP (n = 26...

Purpose: Lifestyle interventions can be effective in the management of overweight and obesity in children. However, ineffective guidance towards interventions and high attrition rates affect health impacts and cost effectiveness. The aim of this study was to gain insight into the factors influencing participation, in particular guidance towards, ad...

Background: Patient participation in decision-making on health-related research has gained ground. Nineteen Dutch health-related research-funding organisations (HFs) have taken up the challenge to include patients in their funding process. A 'Patient participation (PP) advisory team' was set-up, with HF-representatives and patient advocates, who t...

The introduction of Information and Communication Technology (ICT) has been shown to play a role in reinforcing existing social inequalities. This study aims to gain insights into the perspectives, experiences and needs of disadvantaged groups with respect to ICT. In the Netherlands, a relatively large and important group of non-users are mothers w...

Background & objective: Involving patients in scientific research has been shown to improve the relevance of the research, as well as its quality and applicability. Harteraad, the Dutch patient organization for people with cardiovascular diseases, has a Committee of Experienced Experts (patients) advising researchers on the content of grant propos...

Background: There is a correlation between self-esteem in adolescents and risks and protective factors for their health and welfare. The study was conducted to determine the prevalence of low self-esteem and sociodemographic features related to anxiety, depression, educational stress, and suicidal ideation in secondary school students in Vietnam. M...

This systematic review aimed to provide medical professionals with insight into beneficial and harmful effects of consultation recording for patients aged 50 years and over. This insight could enable medical professionals to decide on whether or not to promote consultation recording in their practice. The systematic literature search was performed...

Mothers of disabled children who are living in poverty face multiple interlinked disadvantages in relation togender, care, disability, and poverty. Yet, their experiences have been largely neglected in academic literature.This study explores how mothers from a poor urban settlement in South Africa manoeuvre, adapt, act and reactin such a difficult...

The chances that children have to participate in child protection services are largely contingent upon the attitudes and skills of case managers. They have a crucial role in ensuring that a child's voice is being listened to and acknowledged in often sensitive dialogues. Therefore, the aim of this study is to investigate what case managers need to...

Context The prevalence of overweight and obesity among adolescents has risen dramatically in the last decade, disproportionally affecting adolescents from disadvantaged neighbourhoods. Adolescent boys from disadvantaged neighbourhoods are hard to reach for health promotion. Objective This study aims to understand perceptions of health and health‐p...

Parents of disabled children face many challenges. Understanding their experiences and acknowledging contextual influences is vital in developing intervention strategies that fit their daily realities. However, studies of parents from a resource-poor context are particularly scarce. This ethnographic study with 30 mothers from a South African towns...

Involving children in participatory health research (PHR) provides exciting opportunities to gain insights into their perspectives and capacities and encourages them to make a meaningful contribution to issues affecting their lives. It is underpinned by a rights-based approach, where children’s evolving expertise is valued. In PHR, children are not...

Background: Research on Juvenile Idiopathic Arthritis (JIA) should support patients, caregivers/parents (carers) and clinicians to make important decisions in the consulting room and eventually to improve the lives of patients with JIA. Thus far these end-users of JIA-research have rarely been involved in the prioritisation of future research. Ma...

The research on child poverty typically takes a deficiencies approach that focuses on material deficiencies, which are considered to have a profoundly negative impact on children’s well-being. Countering this approach, our research is based on a lifeworld orientation and explores children’s everyday life from their own perspective. Using a range of...

Despite ample research on the relationship between disability and poverty, the experiences of parents of disabled children are herein generally overlooked. We argue that an understanding of how poverty shapes caring for a disabled child is crucial for disability inclusive development. Therefore, this paper narratively reviews literature on carers o...

School gardening programmes are among the most promising interventions to improve children’s vegetable intake. Yet, low vegetable intake among children remains a persistent public health challenge. This study aimed to explore children’s perspectives, experiences, and motivations concerning school gardening in order to better understand and increase...

Increasingly, children are seen as social actors who are knowledgeable about issues that concern their lives, both in research and policymaking. However, this approach is not without challenges, particularly in relation to sensitive topics like poverty. One key challenge relates to how to involve children effectively so that their stories are actua...

Inadequate vegetable consumption is a global public health concern related to numerous health risks. A promising intervention to increase children's vegetable consumption is school gardening, although earlier studies have shown mixed results. This study explores how gardening might contribute to changed attitudes towards eating vegetables from a ch...

For this qualitative case study, 23 semistructured interviews were conducted with clients of a private coaching center in the Netherlands. We explored why adults with attention deficit/hyperactivity disorder (ADHD) prefer coaching, which is financed out-of-pocket, over public mental health care and what the perceived added value is for them. The pa...

Rationale, aims and objectives: Children are not just small adults; they need to be diagnosed and treated in the context of their rapid growth and development. However, in guideline development, children's needs and interests are still overlooked. This study aims (1) to develop a tool that could stimulate guideline developers to take children into...

School playgrounds are important physical activity (PA) environments for children, yet only a small number of children reaches the target of 40% of moderate-to-vigorous PA time during recess. The aim of this study was to explore children's perspectives (i.e., child-identified determinants) of activity-friendly school playgrounds. We conducted parti...

Background: Over the past six decades, the concept of patient-centred care (PCC) has been discussed in health research, policy and practice. However, research on PCC from a patients' perspective is sparse and particularly absent in outpatient psychiatric services. Aim: to gain insight into what patients with bipolar disorder and ADHD consider "g...

Aims and objectivesTo investigate healthcare professionals' perspectives on child participation in paediatric hospital care and their opinions on improving participation practices. Background Some scholars argue that the decision-making capacities of children largely depend on the attitudes of healthcare professionals rather than on the children's...

Background Attention deficit/hyperactivity disorder (ADHD) is a common psychiatric disorder in childhood which has recently been acknowledged to persist into adulthood in two-thirds of cases. However, the problems faced by adults with ADHD in their daily lives remain largely unexplored.Objective To assess the perspectives, problems and needs of adu...

Objective Child participation is internationally seen as an crucial aspect of the child protection and child welfare. Scholars have differences of opinion about what participation entails but even less is known about whether children and case managers have similar perspectives on participation and its goals. Method An exploratory study was conduct...

This study focuses on problems children living in contexts of poverty face in daily life and how they perceive poverty. Findings are based on research with children (8–12 years) from impoverished areas in the Netherlands. Besides the problems as identified by the children, such as the poor quality of playgrounds and the lack of money for activities...

Interactions with children in clinical settings are often criticized because parents and medical professionals speak for children rather than to them. Such approaches do not take the agency of children into account. First, to examine how children enact agency in a clinical encounter and draw lessons from this to improve health-care practices for ch...

Background Taking the needs, wishes and experiential knowledge of clients into account is considered to result in a better fit between the supply and demand of modern health care, contributing to the improvement of individual care, organizations, institutions and policy. However, the current generation of the elderly have had little experience of c...

Het leek me toepasselijk om in een tijdschrift dat onderzoek over kinderen en adolescenten als primaire focus heeft, een boek te bespreken dat handelt over het betrekken van deze groep in onderzoek.

Although it is widely recognized that children are willing, capable and legally entitled to be active participants in their health care, parents are generally invited to evaluate paediatric hospital care and services rather than children themselves. This is problematic because parents cannot serve as the only spokespersons for the perspectives and...

There is a rapidly growing public awareness of mental health problems among Vietnamese secondary school students. This study aims to determine the prevalence of anxiety, depression, and suicidal ideation, to identify related risk factors, and to explore students' own proposals for improving their mental health. A cross-sectional study was conducted...

Secondary school can be a stressful period for adolescents, having to cope with many life changes. Very little research has been conducted on the mental health status of secondary school pupils in South East Asian countries, such as Vietnam.The study aimed to explore perceptions of mental health status, risk factors for mental health problems and s...

This state-of-the-art literature review, based on a literature search of multiple scientific bibliographic databases, aims to shed light on what is known about barriers and factors facilitating child participation within the child protection and child welfare services from both children's and social workers' perspectives. The personal relationship...

Gids voor ouders en hulpverleners van kinderen met diabetes

Bijzonder aan de behandeling van diabetes is dat deze slechts voor een zeer klein deel door medici wordt uitgevoerd en nauwelijks in het ziekenhuis plaatsvindt; het grootste deel van de behandeling wordt door patiënten zelf in hun eigen leefomgeving gedaan.

Controle is het kernwoord in de diabeteszorg. Voor alle betrokkenen is duidelijk dat controle van de bloedsuiker noodzakelijk is met het oog op acute en langetermijncomplicaties.

De negenjarige Mark hangt onderuitgezakt aan het bureau van de diabetesverpleegkundige. Samen met zijn moeder, die in de stoel naast hem zit, komt hij voor het driemaandelijkse controlebezoek naar de kinderpoli.

Het begrip ‘participatie’ lijkt een containerbegrip geworden en misschien zelfs wel een cliché het is niet meer weg te denken uit het beleid over zaken als gezondheidszorg, onderwijs, ontwikkelingssamenwerking, milieu, jeugdbeleid en werkgelegenheid.

Iedereen wil graag dat met diabetes goed te leven valt, zo bleek uit het voorgaande hoofdstuk. In dit hoofdstuk staat de vraag centraal wat kinderen voor dat goede leven moeten doen. De behandeling vereist dat kinderen met diabetes meerdere keren per dag insuline spuiten, hun bloedglucose meten, gezond eten, voldoende bewegen, en ook geregeld voor...

Kindparticipatie in de diabeteszorg is geen keuze; kinderen met diabetes voeren het grootste deel van de behandeling zelf uit buiten het toezicht van behandelaars. Bovendien worden behandelvoorschriften niet klakkeloos overgenomen, maar geïnterpreteerd en vergeleken met eerdere ervaringen, persoonlijke inzichten en doelen.

Voorgaande hoofdstukken illustreerden dat de interacties tussen kinderen, ouders en behandelaars bemoeilijkt worden door een verschil in perspectieven, doelen en prioriteiten. Deze verschillen blijken in de praktijk door volwassenen veelal toegeschreven te worden aan het kind zijn, zoals deze opmerkingen illustreren.

Delen in macht en onmacht biedt inzicht in het alledaagse leven van kinderen met diabetes en in de machts- en afhankelijkheidsrelaties tussen kinderen, ouders en behandelaars. Het kernargument is dat kinderen deel uitmaken van praktijken, ook van die praktijken waarin hun perspectieven, kennis en ervaring niet actief worden verwelkomd en (h)erkend....

Objective: To assess the reproducibility (reliability and inter-rater agreement) of the client-centred Canadian Occupational Performance Measure (COPM). Design: The COPM was administered twice, with a mean interval of seven days (SD 1.6, range 4-14), by two different occupational therapists. Data analysis was based on intraclass correlation coeffic...

Objective: To study the convergent and divergent validity of the Canadian Occupational Performance Measure (COPM). Design: Cross-sectional study. Setting: The occupational therapy departments of two university hospitals in Amsterdam. Subjects: One hundred and five consecutive outpatients. Outcome measures: The COPM is a measure of a client's self-p...