Information for researchers

The research ‘What works?’ is divided into three projects. A summary of the projects is described below.

Project 1 and 2

Rationale: Becoming a parent is one of the most intense transitions in a person’s life. A small but increasing number of persons with intellectual disabilities (ID) also experiences this transition. Research shows that children of parents with ID are at significant risk for maladaptive parenting, including abuse and neglect. Although there is a clear need for parenting support for people with ID, a large proportion of parents with ID is not reached with parenting support or deems the support offered as unhelpful. Little is known on how to make support more effective for parents with these difficulties.

Objective: The general objective is to get more insight in determinants of effective parenting support to parents with intellectual disabilities. Based on this general objective, we distinguish two studies: The goal of project 1 is to elucidate why some parents with ID more readily ask for and accept support, an important variable strongly related to good-enough parenting. Additionally, the role of the working alliance between parents and their professional caregivers will be studied.

The goal of project  2 is to show the extent to which parenting skills are malleable in parents with ID, using state of the art parenting skill interventions adapted for parents with ID.

Study design: In project 1, a cross sectional study will be done investigating the factors influencing asking and accepting support by parents (N=200) with ID and their professional caregivers. From this sample, parents experiencing the highest level of child-related parenting stress are selected (N=120) to address the goal of project 2. In this selected sample, a randomized controlled trial will be undertaken of an intervention to improve parenting skills (VIPP-LD).

Study population: Parents with Intellectual Disabilities or Borderline Intellectual Functioning (borderline IQ: 85) with at least one child between age 1 and 7.

Intervention: The VIPP-intervention, Video-feedback Intervention to promote Positive Parenting (Juffer, Bakermans-Kranenburg & van IJzendoorn, 2008) will be investigated in project 2. This is a protocol for a brief and focused home-based parenting intervention program, utilizing videotaped interactions of the parent and child involved and video feedback. VIPP focuses on sensitive responsiveness and gentle discipline. Slight adaptations are made, creating a VIPP-LD version. 

Main study parameters: In project 1, relations are investigated between the inclination to ask and accept professional parenting support as a dependent variable and working alliance with the professional caretaker, level of adaptive functioning and reading skills, former experience with service providers, perceived need for support and more objective indicators of need for support as explanatory variables. In project 2, the effects of the VIPP-LD intervention on sensitive responsiveness, positive discipline, parent-child interaction and parenting stress will be investigated. Explanatory variables from project 1 will be used as control variables in project 2. 

Nature and extent of the burden and risks associated with participation, benefit and group relatedness: In project 1, parents are approached with a set of questionnaires with an estimated time investment of 3 hours. None of the questionnaires used are expected to be a risk for the participants. The tasks used for video-observation of parenting skills and parent-child interaction (in the experimental and control condition) in the second project cause some frustration in both parents and children, but this burden is seen as in proportion with the possible gains for parents and children who receive the intervention. Burdens and frustrations were tested in a small-scaled pilot study and proved to be acceptable for both parents and children.

Project 3

Objective:  Project 3 will focus on the perspectives of members of the extended network of parents with ID. Persons within the extended network include partners, parents, siblings, close friends, colleague’s and neighbours. The most important criterion is that the parent with ID has an ongoing relationship with each respective network member that concerns one of the important life domains, such as social activities, domestic care, sustenance, work, and child rearing.

Project 3 is based on two parts.The objective of the first, qualitative part is to explore the hindering and promoting factors for family and friends to support the parent within the domain of child rearing. We will explore these factors by means of focus groups and interviews with familiy members and friends of a small group of the parents with ID. These qualitative findings will be used to construct a questionnaire for family members and friends of parents with ID about the promoting and hindering factors they experience in giving parenting support.

The objective of the second, quantitative part of project 3 is to give a description of how the network members experience the hindering and promoting factors as found in the first part of this project. These hindering and promoting factors will be explored as they relate to characteristics of the parenting situation, family relationships, societal and personal attitudes towards parents with ID, and the role of professional caregivers. We will also explore which factors play a role in whether or not network members give support. These factors will give more insight in to what extend family and friends can be supported in giving support.

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