| dc.description.abstract | This pilot study aims to investigate which needs parents of children with the 22q11 deletion syndrome (22q11DS) have concerning the upbringing of their children., in order to develop a training to help these parents with their needs. This is one of the first studies which investigates this target audience concerning the parenting of children with 22q11DS. Previous research shows a higher level of stress for this specific group of parents and the effect of mindfulness for certain target groups. This study includes a quantitative (N=11) and a qualitative (N=7) part to investigate the needs and possibilities of this target group. In the quantitative part, respondents completed a questionnaire measuring the parenting burden (‘Opvoedingsbelasting Vragenlijst’). It describes the amount of challenges parents experience in relation to the upbringing of their child. This questionnaire focuses on five scales: Parent-child relationship, problems with parenting, role limitations, depressive moods of parents and health complaints that parents experience. The results show that the scale of role limitations lead to the largest problem for this group of parents. A training for parents should therefore contain tools to help them deal better with these challenges. Parents were interviewed in the qualitative research. The interview focussed on investigating if parents are interested in a parenting training, if they are stressed, what resources they miss at the moment and what a training should address. The results of the qualitative research also show that parents experience struggles concerning role limitations. They find it hard to take time for themselves and their other children, when the child with 22q11DS needs much attention. Parents expect that when they learn to handle their stress, this will have a positive effect on the family. Mindfulness-Based Stress Reduction (MBSR) training focused on parenting aims to reduce stress and gives parents tools to better cope with stressful parenting situations. If there should be a training, they would like to see a training that focuses on situations of upbringing a child with this specific syndrome. Further research, with a larger sample, is needed to be able to generalize the results and further elaborate the needs of the parents. | |
