SAFE, a new therapeutic intervention for families of children with autism: a randomised controlled feasibility trial

Abstract

ObjectivesTo establish the feasibility of a definitive randomised controlled trial of Systemic Autism-related Family Enabling (SAFE), an intervention for families of children with autism.DesignA randomised, controlled, multicentred feasibility study.SettingParticipants were identified from three National Health Service (NHS) diagnosing centres in Plymouth and Cornwall and a community pathway.Participants34 families of a child with a diagnosis of autism severity level 1 or 2 between 3 and 16 years. Four families were lost to follow-up.InterventionsSAFE is a manualised five-session family therapy-based intervention delivered over 16 weeks and designed for families of children with autism. SAFE involves families attending five 3-hour sessions led by systemic practitioners.Primary and secondary outcome measuresThe proposed primary outcome measure was the Systemic CORE 15 (SCORE-15). Proposed secondary outcome measures: Patient Health Questionnaire-Somatic Anxiety Depressive Symptoms, the Coding of Attachment-Related Parenting for use with children with Autism, the Child Behaviour Checklist (CBCL), the Reflective Functioning Questionnaire (RFQ) and the Caregiving Helplessness Questionnaire. Outcome measures were collected at baseline and 24 weeks post randomisation.ResultsAll primary caregivers retained in the study completed the SCORE-15 at both time points. 34 of the target of 36 families were recruited and 88% of families were retained. Training for therapists was effective. Feedback revealed willingness to undergo randomisation. There was 100% attendance at appropriate sessions for core family members. The SCORE-15 showed reduction in scores for families receiving SAFE compared with controls suggesting positive change. Qualitative data also revealed that families found the study acceptable and families receiving SAFE experienced positive change. Feedback indicated that the SCORE-15 should be retained as a primary measure in a future trial, but secondary measures should be reduced.ConclusionsThis study indicates that a larger trial of SAFE is feasible. Findings suggest that SAFE can address current gaps in recommended care, can be confidently delivered by NHS staff and has potential as a beneficial treatment.Trial registration numbersISCTRN83964946 and IRAS213527.

Anger without a voice, anger without a solution: Parent–child triadic processes and the experience of caring for a child with a diagnosis of autism

“…Using multiple cases allows for comparison and the analysis of differences, and to refine theory by examining its ability to make sense of new contexts. The data is drawn from a larger study of an intervention for families with children who have a diagnosis of autism (McKenzie et al, 2020). Parents were interviewed using the Parent Development Interview (PDI: Aber et al, 1985), a semi-structured interview asking parents about their child, their relationship with their child and their experience of being parented.…”

Are families supported to come to terms with an autism diagnosis? A service evaluation of referrals to family therapy for young people with autism in one NHS trust

“…Although family support is necessary, it is likely that this should be provided for all families soon after receiving a diagnosis rather than needing to make a later referral for FT. An early FT intervention that could be offered to ASD families is Systemic Autism-related Family Enabling (SAFE), which was developed by McKenzie et al (2020) using the evidence-based principles of FT that have been reported to be effective in improving outcomes across a range of conditions (Carr, 2018;Stratton, 2005Stratton, , 2016 and focusses on improving family communication to enhance family mental wellbeing. There is evidence from a pilot randomised controlled trial to show that providing a group of families with five sessions of SAFE within 12 months after receiving a diagnosis significantly improved parent-rated family functioning compared with a group of controls (McKenzie et al, 2020). This suggests that families could benefit from a FT intervention soon after receiving the young person's ASD diagnosis, and if this is not provided, families may be referred to FT at a later point to receive support.…”

“…Coming to terms with and managing an ASD diagnosis can put a strain on young people and their families. It is clear from research that family members of young people with autism often experience higher levels of stress, anxiety and depressive symptoms than that of non-clinical populations, with 50% of parents presenting a comorbid mental health problem (McKenzie et al, 2020;Spain et al, 2017). Previous research has also revealed that maternal exposure to trauma and abuse can increase the risk of their offspring developing ASD, which indicates that mental health problems may already be high in this parent group irrespective of their child's autism (Roberts et al, 2014(Roberts et al, , 2016.…”

Improving support for children with autism and their families using a 100 day challenge framework

“…Evidence shows that parents of children with autism are at appreciable risk of poor mental health, and unsatisfactory service interactions exacerbate their problems 7. Mothers of children with autism report lower levels of satisfaction with service interactions than those of children with other disabilities, and parents are more likely to be hospitalised for mental disorders than those of neurotypical children 7.…”

“…Evidence shows that parents of children with autism are at appreciable risk of poor mental health, and unsatisfactory service interactions exacerbate their problems 7. Mothers of children with autism report lower levels of satisfaction with service interactions than those of children with other disabilities, and parents are more likely to be hospitalised for mental disorders than those of neurotypical children 7. Bromley is a borough in the South East of England with over 330 000 residents, and the experience for families here has been similar to that of thousands of families across the UK: long waiting times for diagnosis and specialist services, parents battling over scarce resources and support, and stretched budgets.…”