24/72 Increasing social support and parenting skills for parents with learning disabilities commissioning brief

Introduction

The aim of the Health Technology Assessment (HTA) Programme is to ensure that high quality research information on the clinical effectiveness, cost-effectiveness and broader impact of healthcare treatments and tests are produced in the most efficient way for those who plan, provide or receive care from NHS and social care services. The commissioned workstream invites applications in response to calls for research on specific questions which have been identified and prioritised for their importance to the NHS, patients and social care.

Research question

What is the effectiveness and cost-effectiveness of interventions to increase social support and parenting skills for parents with learning disabilities?

1. Target group: Parents with learning disabilities (also referred to as intellectual disabilities). Applications are encouraged which include recruitment from populations which have been historically underserved by research activity in this field, for example those from low socioeconomic status backgrounds and those with English as a second language. 
2. Interventions: Parenting interventions to increase social support and parenting skills, to be defined and justified by the applicant. The interventions must already have a demonstrated signal of efficacy and be manualised so that their use can be generalisable.  
3. Comparator: Comparison of interventions.  
4. Outcomes: Applicants to define and justify the primary outcome that the trial will be powered against, with a focus on an objective measure. Outcomes of interest include: children’s developmental milestones (e.g. educational/developmental, social skills); child-reported wellbeing; children allowed to remain safely at home or returned to parents’ care; children removed from parents’ care; parent reported levels of parenting skills, confidence, and feelings of support; social workers’ level of concern for children’s welfare; relevant costs (e.g. associated with training and delivery of the intervention, social care costs of removing children from parents’ care).
   Existing Core Outcomes should be included amongst the list of outcomes unless a good rationale is provided to do otherwise. Applicants are encouraged to report recruitment and findings disaggregated by sex (and other demographic factors where relevant). 
5. Setting: Any appropriate setting.
6. Study design: A randomised controlled trial with an internal pilot phase to test key trial processes such as recruitment and adherence. Clear stop/go criteria should be provided to inform progression from pilot to full trial. Applicants to define and justify an appropriate approach to the health economic evaluation that takes into account cross sectoral impact (in terms of both costs and outcomes).
7. Minimum duration of follow-up: Applicants to define and justify. Whilst we are interested in capturing long-term outcomes, the intention is for this study to inform practice in a meaningful timeframe, and therefore important outcome measures will be those that can be reliability measured over a two-to-three-year timeframe.
   Longer-term follow-up: If appropriate, researchers should consider obtaining consent to allow potential future follow-up through efficient means (such as routine data) as part of a separately funded study.

Rationale

Research shows that parents with learning disabilities (PWLD) are good parents when appropriate support is provided. These families are often over-represented in the child protection system and children are regularly removed from their families; however, earlier intervention, such as support with parenting, could reduce these negative outcomes. PWLD often have complex needs which should be considered when providing support, including issues of intersectionality such as poverty, discrimination, depression, and poor self-esteem.

Current practice for supporting PWLD varies widely. Often, there is no social care involvement for PWLD because parenting support is not part of generic adult services traditional caseload, unless safeguarding and welfare concerns are raised, and child protection services become involved. The involvement at this stage is then crisis and investigation driven, with a focus on addressing the current risk to the child, rather than offering ongoing support to parents – which could prevent the crisis stage from being reached.

Research has found that successful, supportive interventions require an ongoing positive relationship between PWLD and professionals, rather than a one-off intervention. Various evidence syntheses have found that interventions designed to strengthen social support networks and improve parenting skills appear to be beneficial, but further robust research is required to establish what is most effective, who benefits most, what parts of each intervention are most helpful, and a health economic analysis to establish cost-effectiveness. The HTA programme, therefore, wishes to fund a study that will investigate parenting interventions to increase social support and parenting skills for PWLD.

The HTA programme acknowledges the complexities affiliated with this research area. This includes, but is not limited to, the potential difficulties related to recruiting and retaining people with learning disabilities, and appropriately defining the target population due to issues with terminology around learning/intellectual disabilities/difficulties. It is, therefore, important for applicants to carefully consider and justify their chosen intervention(s), target group, study design, and setting. Thoughtful and well-embedded PPI with a wide range of stakeholders will be required.

As per the considerations in the above brief, proposals are invited to include a methodological sub-study, known as a ‘study within a trial’ or ‘SWAT’. Methodological sub-studies (SWATs) are used to limit study inefficiency and to provide evidence to support future processes and decision-making. Further information on methodological sub-studies can be found on the Further information on methodological sub-studies (SWATs) can be found on the NIHR website. The programme would be interested in new and innovative methodologies, measures and outcomes, appropriate to the population and intervention.

Additional background information

A background document is available that provides further information to support applicants for this call. It is intended to summarise what prompted the call and the existing evidence base, including relevant work from the HTA and wider NIHR research portfolio. It was researched and written on the basis of information from a search of relevant sources and databases, and in consultation with a number of experts in the field. If you would like a copy please email htaresearchers@nihr.ac.uk.

Making an application

If you would like to apply for this funding opportunity, you can begin your application via the funding opportunity page.

Your application must be submitted online no later than 1pm on 27 November 2024. Applications will be considered by the HTA Funding Committee at its meeting in January 2025.

Guidance notes and supporting information for HTA Programme applications are available

Shortlisted Stage 1 applicants will be given eight weeks to submit a Stage 2 application. The Stage 2 application will be considered at the Funding Committee in May 2025.

For commissioned topics, the Programme strongly discourages the practice of the same co-applicant joining more than one competing team, other than in unusual circumstances (for example, a lead from a named charity or a unique national expert in a condition).

For such exceptions, each application needs to state the case as to why the same person is included. The shared co-applicant should not divulge application details between teams, and both teams should acknowledge in their application that they are aware of the situation, and that study details have not been shared.

Should you have any queries please contact htacommissioning@nihr.ac.uk.