Mental Health

A randomised controlled feasibility study of the Carers-ID intervention to support the mental health of family carers of people with intellectual disabilities.

TL;DR

Despite retention challenges, results suggest feasibility in delivering the Carers-ID online intervention to family carers of people with intellectual disabilities, with a statistically significant between-group difference observed for resilience at two weeks post-baseline.

Key Findings

Of 150 carers screened, 99 met inclusion criteria and 84 completed the baseline assessment, representing an 85% baseline completion rate among eligible participants.

  • Recruitment was conducted via UK-based voluntary organisations and NHS learning disability teams.
  • 150 carers were screened in total.
  • 99 of those screened met inclusion criteria.
  • 84 of the 99 eligible carers completed baseline assessment (85%).
  • Participants were randomly assigned to Carers-ID intervention (n=51) or waitlist control (n=48).

Retention rates were low, with 55% of participants retained at post-intervention assessment and only 41% retained at three-month follow-up.

  • Post-intervention retention (T2, 2 weeks from baseline) was 55%.
  • Three-month follow-up retention was 41%.
  • The authors attributed retention challenges to time and resource pressures faced by family carers.
  • These challenges highlight the need for flexible intervention formats for this population.

The Carers-ID intervention showed a statistically significant between-group difference in resilience at two weeks post-baseline.

  • Adjusted mean difference for resilience between groups at T2 was 12.20 (SE=5.83, p=0.04), favoring the intervention group.
  • This was the only outcome measure to reach statistical significance at the p<0.05 threshold.
  • The intervention spanned two weeks with assessments at baseline, post-intervention, and three-month follow-up.

No statistically significant between-group differences were found for wellbeing, social connectedness, depression, stress, or anxiety at two weeks post-baseline.

  • Adjusted mean difference for wellbeing: 3.42 (SE=2.84, p=0.23).
  • Adjusted mean difference for social connectedness: 5.09 (SE=5.12, p=0.32).
  • Adjusted mean difference for depression: 0.98 (SE=1.40, p=0.49).
  • Adjusted mean difference for stress: 0.42 (SE=1.26, p=0.74).
  • Adjusted mean difference for anxiety: 1.06 (SE=1.32, p=0.43).

The Carers-ID intervention was developed as an online programme specifically in response to the intensified pressures on family carers of people with intellectual disabilities during the COVID-19 pandemic.

  • Intellectual disability affects 1-3% of the global population, representing over 200 million people.
  • Family carers of individuals with ID experience high levels of stress, poor health, and reduced quality of life due to ongoing caregiving demands.
  • These pressures intensified during the COVID-19 pandemic, prompting the development of Carers-ID.
  • The intervention was designed specifically to support carers' mental health.

The study was assessed as feasible for delivering the Carers-ID intervention despite retention challenges, supporting progression to future effectiveness trials.

  • The trial followed CONSORT reporting guidelines.
  • Randomisation was conducted by an independent third party.
  • The authors concluded that future effectiveness trials should address barriers to participation and tailor interventions for this underserved population.
  • The study was registered at ClinicalTrials.gov: NCT05737823.
  • The study was described as a parallel randomised controlled feasibility trial evaluating recruitment and retention rates, feasibility of data collection, and potential effect sizes.

What This Means

This research tested whether an online support programme called Carers-ID could be delivered to family members who care for people with intellectual disabilities. The programme was developed during the COVID-19 pandemic, when many carers were facing especially high levels of stress. The study randomly assigned 99 eligible carers to either receive the two-week online programme (51 people) or to a waitlist control group (48 people), and measured outcomes including wellbeing, resilience, social connectedness, depression, anxiety, and stress at baseline, two weeks later, and at three months. The main goal of the study was to test whether running a larger trial would be practical—looking at how many people could be recruited and how many stayed involved throughout. Results showed that while 85% of eligible carers completed the initial assessment, retention dropped significantly over time, with only 55% completing the post-intervention assessment and 41% remaining at the three-month follow-up. Among the outcomes measured, only resilience showed a statistically significant improvement in the intervention group compared to the control group at two weeks (mean difference of 12.20, p=0.04). No significant differences were found for wellbeing, social connectedness, depression, stress, or anxiety. This research suggests that delivering the Carers-ID programme to family carers of people with intellectual disabilities is feasible, but that keeping carers engaged in research studies is a major challenge, likely because of the time pressures and demands of caregiving. The authors suggest that future, larger studies testing whether the programme is truly effective should find ways to make participation more flexible and accessible for this often-overlooked group of people.

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Citation

Leonard R, Truesdale M, Brown M, Marsh L, Todd S, Hughes N, et al.. (2026). A randomised controlled feasibility study of the Carers-ID intervention to support the mental health of family carers of people with intellectual disabilities.. PloS one. https://doi.org/10.1371/journal.pone.0345096