A short summary in English of the core principles and recommendations
Module 1: Information
Research Questions
– What information do parents of a child with a disability need?
– In what ways do parents wish to receive this information?
– What information needs do children and young people up to the age of 18 with a disability have?
– In what ways do children and young people wish to receive this information?
– Which ways of providing information to parents and children are effective?
Core principles
– Parents who are told that their child has a disability have a great need for information
– Additional to the information about the condition and facilities, parents want to know what impact the condition can have on themselves, their family and daily life
– The need for information differs per parent and can change during the care process
– Parents need qualitative good information that is tailored to their needs
– Often information is given by a professional, but parents also consult the Internet and social media themselves
– Parents appreciate it when information is offered multiple times
– Parents need contact person with whom they can easily get in touch in between
– Children and young people need clear explanations about the consequences of their condition for their future
– Young people want to play an active role in their care process, but are searching for the role they can and want to take
– Children and young people want to be able to ask questions to healthcare professionals in an accessible way
– Conversations with an experienced expert can also be helpful in this
– Young people want to be referred to places where they can look up good information themselves
– Information provision is a demand-oriented, individually tailored process that focuses on the needs and possibilities of both child and family
Recommendations
– Providing information is always tailor-made. Look at the needs of the family at different points in the care process and repeat information. Ask regularly what information a family needs at that moment
– Proactively, in addition to information about the disability itself, also provide information about the possible consequences of the condition on the overall functioning of the child, parents and family in the short and longer term
– Proactively refer to websites where parents and young people can find appropriate and reliable information|
– If desired, bring young people into contact with experts-by-experience; Their knowledge and experience can be very helpful
– Make sure that parents and young people have one contact person; A healthcare professional they can approach in an accessible way, someone who knows the family and the care landscape well
– Care professionals will find useful tools in the toolbox with which they can improve psychosocial care and match it to the needs of the child, parents and family.
Module 2: Psychosocial development of the child
Research Questions
– To what extent do psychosocial problems occur in children with disabilities?
– To what extent do these play a role in participation at home, at school and in a child’s free time?
– What are effective ways to identify psychosocial problems in children with disabilities?
– Which interventions are effective for psychosocial problems?
Core Principles
– Some children with disabilities suffer from psychosocial problems (e.g. anxiety, depression, rebellious behaviour and social problems). These problems are more common than in children without disabilities
– The nature and degree of cognitive and psychosocial problems may vary throughout development
– An understanding and accessible environment, such as the family, daycare, or school contributes to positive psychosocial development
– Psychosocial problems hinder optimal participation
– Various factors in the child and the environment (parents, school, friends) can hinder participation, but also promote it
– A positive attitude and self-confidence of the child and environment promote participation
– Young people want to be seen as individuals and take control of how they can increase their participation
– It is important to regularly ask children and young people how they are doing, from the broad perspective of participation in daily life
– By regularly mapping the psychosocial functioning of a child, any problems can be identified at an early stage and guidance can be linked to this
– For the research into psychosocial functioning, diagnostic tools, questionnaires and interviews can be used (see toolbox). It is important to take into account any motor or communication limitations and information processing problems that may affect the outcomes of these diagnostic toola
– A good picture can be obtained of psychosocial functioning by collecting information in different domains and from multiple informants
– In the treatment of psychosocial problems, interventions can be used that are used in youth healthcare and education
– Cognitive behavioral therapy interventions focused on coping skills, competence, experience and self-management in treatment have proven effective
– In parent guidance, attention to positive parenting behavior is promising, as are the interventions that focus on parents’ own coping skills
Recommendations
– Regularly ask children and young people how they are doing and connect with them
– In order to improve participation, regular mapping of psychosocial functioning is important. Repeated screening throughout a child’s development helps to prevent more serious problems later in life
– For the research into psychosocial functioning, diagnostic instruments, questionnaires and interviews from the toolbox can be used
Module 3: Parents
Questions
– What is the impact of having a child with a disability on parents?
– How do parents play a role in the child’s social participation?
– How can the functioning and well-being of parents be mapped?
– Which interventions to support parents are proving to be effective?
Core Principles
– Having a child with a disability has a big impact on both parents
– Parents of a child with a disability experience more problems in their own functioning, especially in the areas of stress, depressive symptoms, anxiety and quality of life
– Having a child with a disability is experienced by parents as a ‘living loss’ or ‘continuous grief’
– The health of parents (in the broadest sense) contributes to the development of children and their participation
– Sufficient support from and by parents and the extent to which the child feels accepted promotes the participation of parents and child
– Systematic monitoring of the well-being of parents of a child with a disability is important during all phases of treatment
– Questionnaires are available that can map the functioning of parents and possible problems
– Parents like it when they are regularly asked how they are doing
– Interventions must be well suited to the needs of parents
– A group setting can have a positive effect
– Interventions that are (preventively) aimed at dealing with stress, dealing with the child’s behavior and increasing self-efficacy seem to yield the most beneficial effects
Recommendations
– Ask parents regularly how they are doing and address their needs. There are many differences in the extent to which their child’s disability impacts them
– Pay attention to the challenges of parents and support them in this
– Make sure that guidance, support and interventions fit well with the needs and possibilities of parents
– Help parents by making it clear that it is normal for them to experience problems in their own functioning, such as stress and anxiety
– Discuss the possibility and importance of interventions that are (preventively) aimed at dealing with stress, dealing with the child’s behavior and increasing self-confidence
– Make an inventory of how parents are supported in organizing the care around their child. The regulatory burden is perceived by many parents as high
– Care professionals will find useful tools in the toolbox with which they can improve psychosocial care and match it to the needs of the child, parents and family.
Module 4: The Family
Questions:
– What is the impact of a child with a disability on the family?
– To what extent can the family play a role in the social participation of the child?
– How can family functioning be mapped?
– Which interventions prove effective in supporting the family?
Core Principles
– The impact of a child with a disability on the whole family is great
– Siblings are often worried, experience more difficulties with concentration and contact with peers. As a result, they run the risk of less well-being and functioning
– Siblings learn that life can be different, that enriches them. But it is important to pay attention to them
– Acknowledging and supporting the challenges of the whole family is important
– The family and its functioning affect the psychological health, behaviour, social competence and therefore also participation of the child
– In addition to the participation of children with disabilities, attention should also be paid to the participation of the whole family and especially the siblings. Are they given sufficient space to follow their own development path?
– It is important to regularly pay attention to the functioning of the family and the well-being of the family members, to ask how things are going and to connect with them
– There is no one ‘best’ method to systematically map family functioning
– There is no one ‘best’ intervention to support the family
– Elements of successful interventions
1. fit into the daily life and (individual needs) of the family
2. Do not burden parents extra
3. increase knowledge
4. Increase skills
5. offer contact with other experience experts / peer contact / peer support.
Recommendations:
– Adopt an open, respectful and curious attitude to gain insight into the functioning, wishes and needs of the entire family, with explicit attention to the siblings
– Make sure that the participation possibilities of both the family and the family members individually are regularly discussed
– Ask regularly how things are going to parents and other family members. Regularly pay attention to (the challenges of) the whole family and support them in this
– When supporting the family, connect with the ideas, preferences and possibilities of the family
– Point out opportunities for contact with other families/experience experts and regularly offer opportunities to do so
– Keep the gp continuously informed of the care around the family so that he / she can properly perform his / her task as care-manager
– Care professionals will find useful tools in the toolbox with which they can improve psychosocial care and match it to the needs of the child, parents and family
Module 5: The social environment
Questions:
– What is the role of the social environment in the social participation of children with disabilities?
– To what extent can the social environment play a role in the social participation of children with disabilities?
– What are effective ways to map the role of the social environment?
– Which interventions prove effective for supporting participation and improving the functioning of children in their social environment?
Core Principles:
– The attitudes of peers, type of education, and support offered at school, as well as the attitudes of professionals appear to be predictors of the extent to which children with disabilities can participate
– General promoting factors are the attitude (inviting, helpful, sympathetic), acceptance and social skills of the social environment
– General impeding factors are social demands, judgmental attitudes/ stigmas towards the disability, bullying and exclusion, inflexibility, lack of knowledge about the disability and too low or too high expectations
– A proactive attitude of professionals, acceptance, hospitable/inclusive providers and accessible facilities facilitate participation of children with disabilities
– Various tools are available that can map the role of the social environment
– The measuring instruments can focus on experienced support from parents or on mapping different barriers
– There are various interventions available to use the social environment to improve the functioning of the child
– These interventions focus on coaching the healthcare provider or on identifying and removing environmental barriers
Recommendations
– Acknowledge the role of the social environment (peers/friends, school and care staff) in relation to children’s participation and psychological well-being
– Be aware of your own impact on the child, for example through your own attitude or attitude. Maintain a proactive attitude, acceptance, and a welcoming/inclusive approach
– Ask about factors in the social environment that promote participation such as acceptance and social skills, about factors that hinder participation such as stigmas or overprotection and about factors in the physical environment such as accessibility of facilities
– Use measuring instruments and offer possibilities that map aspects of the social environment and interventions that deploy and/or adapt the environment
– Make sure that the social environment such as peers, sports trainers and teachers participate (thinks along, decides, participates) in various phases of rehabilitation
– Care professionals will find useful tools in the toolbox with which they can improve psychosocial care and match it to the needs of children, parents and families
The toolbox which is referred to can be found (in Dutch) at https://revaliderendoejesamen.nl/toolbox/