Evaluation of a Home-based Parenting Support Program: Parenting Young Children (PYC)

Evaluation of a Home-based Parenting Support Program - Parenting Young Children - for Parents With Intellectual and Developmental Disabilities When There is a Risk for Neglect

Background: Parents with intellectual and developmental disabilities (IDDs) have a tendency to provide insufficient caregiving and often need parenting support to prevent neglect and child removal. However, parents with IDDs are not provided with appropriate support, and there is a lack of evidence-based programmes tailored to these parents' needs. Parenting Young Children (PYC) is a home-based parenting programme developed for parents with IDDs. PYC has shown promising clinical results in interview-based studies, but there is no evidence of its effectiveness. The purpose of the proposed study is to evaluate the PYC programme for improving parenting in parents with IDDs where there is risk of child neglect. The study will include a quantitative evaluation, a process evaluation, and a qualitative evaluation of the children's and parents' perspectives on participating in PYC.

Methods: The quantitative evaluation will have a multi-centre, non-randomised, comparative study design. Eligible for participation are parents with IDDs who have children aged 0-9 years living at home and who are assessed as needing tailored parenting support. Thirty parents receiving PYC and thirty parents receiving treatment as usual (TAU) will be recruited from Swedish municipal social services. Outcome variables will be examined before and after the intervention, with a follow-up 6 months after completing the intervention. The primary outcome will be goal-attainment in parenting skills, and secondary outcomes will be parental self-efficacy and children's wellbeing. Interview methods will be used to explore the perspectives of parents and children in the PYC group.

Discussion: This study is motivated by the need for evidence-based support for parents with IDDs, and it focuses on upholding the centrality of child-caregiver relationships and family preservation, as well as children's rights and the rights of people with disabilities. Social services have expressed ethical concerns with employing a randomized design for this vulnerable group, and this study will therefore evaluate PYC in a non-randomized comparative study.

Study Overview

• Status: Recruiting
• Conditions: Intellectual Disability; Autism Spectrum Disorder; Attention Deficit Hyperactivity Disorder
• Intervention / Treatment: Behavioral: Parenting Young Children; Behavioral: Treatment as Usual

• Study Type: Interventional
• Enrollment (Estimated): 60
• Phase: Not Applicable

Contacts and Locations

• Study Contact: Name: Tommie Forslund, PhD; Phone Number: +468163958; Email: tommie.forslund@psychology.su.se
• Study Contact Backup: Name: Birgitta Wennberg, PhD; Email: birgitta.wennberg@liu.se

Study Locations

• Sweden
  • Enköping, Sweden, 749 35
    • Recruiting
    • Social Welfare Office
    • Contact: Helena Svelander
  • Jönköping, Sweden, 551 89
    • Recruiting
    • Social Welfare Office
    • Contact: Ida Jönsson
  • Motala, Sweden, 591 86
    • Recruiting
    • Social Welfare Office
    • Contact: Anna Nylén
  • Tierp, Sweden, 815 80
    • Recruiting
    • Social Welfare Office
    • Contact: Ann Nilsson
  • Uppsala, Sweden, 751 40
    • Recruiting
    • Social Welfare Office
    • Contact: Anette Wettervik

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Child; Adult; Older Adult
• Accepts Healthy Volunteers: No

Description

Inclusion Criteria:

• Parents with IDDs, including ID and other cognitive disabilities (e.g., ADHD and ASD).
• Parents must have children aged 0-9 years living at home and be assessed by the social services to be eligible for tailored parenting support.

Exclusion Criteria:

• Ongoing substance abuse, and/or mental illness of such nature and degree that it may affect parent management training.
• Ongoing child abuse.

Study Plan

How is the study designed?

Design Details

• Primary Purpose: Treatment
• Allocation: Non-Randomized
• Interventional Model: Parallel Assignment
• Masking: None (Open Label)

Number of Arms

2

Arms and Interventions

Participant Group / Arm	Intervention / Treatment
Experimental: Parenting Young Children; Home based parenting programme for supporting parent with IDDs. 3-6 months of structured coaching sessions.	Behavioral: Parenting Young Children; PYC is a home-based intervention programme involving weekly, one-hour sessions over a period of at least six months. The programme has two core modules (1) Parent-Child Interaction and (2) Child Care Skills and Safety. The Parent-Child Interaction module focuses on the parent-child relationship and interaction skills such as parents' responsiveness to the child's signals, giving the child attention and encouragement, and supporting prosocial behaviour. The Child Care Skills and Safety module targets safety at home and the parent's caring skills (e.g. food, health, and hygiene). Checklists are adapted to each parent in order to support the PYC practitioner and the parent. The programme is compiled in a manual that includes work tasks, instructions for how to perform the tasks, and teaching materials.
Active Comparator: Treatment as Usual; Variety of interventions as usually provided by the social services.	Behavioral: Treatment as Usual; TAU consists of a variety of interventions from the social services. The support will be logged and classified in accordance with the Swedish National Board of Health and Welfare's guidelines for classifications of its activities. TAU will be divided into the following five categories: 1) conversation counselling or emotional support, 2) practical support, 3) skills training, 4) compensatory strategies, and 5) other support. Support will also be classified based on whether it is home-based or given outside the home and whether it is individualised or in a group setting.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Change in Canadian Occupational Performance Measure, performance sub-scale.	1 Item, reported as 1-10 points.	Baseline (pre-intervention), 3-6 months (post-intervention), 9-12 months (follow-up)
Change in Canadian Occupational Performance Measure, satisfaction sub-scale.	1 Item, reported as 1-10 points.	Baseline (pre-intervention), 3-6 months (post-intervention), 9-12 months (follow-up)

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Change in Parental Sense of Competence Scale.	15 items, reported as 15-90 points.	Baseline (pre-intervention), 3-6 months (post-intervention), 9-12 months (follow-up)
Strengths and Difficulties Questionnaire.	25 items, reported as 0-50 points.	Baseline (pre-intervention), 3-6 months (post-intervention), 9-12 months (follow-up)

Collaborators and Investigators

• Sponsor: Örebro University, Sweden
• Collaborators: Uppsala University; Linkoeping University; Swedish Council for Working Life and Social Research; Stockholm University; Mälardalen University
• Investigators: Principal Investigator: Thomas Strandberg, PhD, Örebro universitet

Study record dates

Study Major Dates

• Study Start (Actual): September 8, 2022
• Primary Completion (Estimated): March 31, 2026
• Study Completion (Estimated): June 30, 2026

Study Registration Dates

• First Submitted: June 29, 2023
• First Submitted That Met QC Criteria: June 29, 2023
• First Posted (Actual): July 7, 2023

Study Record Updates

• Last Update Posted (Actual): August 14, 2025
• Last Update Submitted That Met QC Criteria: August 11, 2025
• Last Verified: August 1, 2025

More Information

Terms related to this study

• Keywords: parents; Intellectual and developmental disabilities; parenting skills; support programme
• Additional Relevant MeSH Terms: Neurologic Manifestations; Nervous System Diseases; Mental Disorders; Neurobehavioral Manifestations; Neurodevelopmental Disorders; Child Development Disorders, Pervasive; Attention Deficit and Disruptive Behavior Disorders; Autism Spectrum Disorder; Developmental Disabilities; Intellectual Disability; Attention Deficit Disorder with Hyperactivity
• Other Study ID Numbers: ORU 4.2-00340/2023

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No