"Family carers’ expertise ignored" in disabled people’s mental health inpatient care

Family carers of people with intellectual disabilities, autism and mental health conditions are being systematically excluded from decision-making in inpatient mental health services, according to research from Manchester Met.

The study, published in the Journal of Intellectual Disabilities, draws on in-depth focus groups with 27 family carers across the UK and found that detailed knowledge held by families about their relatives’ communication styles, physical health needs, triggers and trauma histories was frequently excluded from care decisions.

Researchers said this knowledge could be crucial to preventing distress and reducing the escalation of crises, but carers described situations in which their attempts to share preventative insights were dismissed.

Many reported witnessing repeated physical restraint, heavy sedation and long-term segregation involving their relatives. They also described experiencing long-lasting psychological trauma themselves, alongside a breakdown in trust with services and concerns that speaking out could result in retaliation against their loved ones.

As one family carer reported: “The hospital was supposed to keep her safe, but it became the place where the most harm happened.”

The research also challenges the use of the term ‘challenging behaviour’, arguing that it can mask distress and unmet basic needs while legitimising coercive responses.

Instead, carers consistently described behaviours as forms of communication that could escalate when supportive and preventative approaches were missed or ignored.

Elaine Craig, Lecturer at Manchester Met and lead-author, said: “When we label distress as ‘challenging behaviour’, we stop asking what that person is trying to tell us, and that’s when care turns into control.”

The study identifies a number of systemic and cultural factors contributing to the exclusion of families, including power imbalances between professionals and families, a lack of accountability and institutional environments that prioritise control over care.

Carers reported that their exclusion was embedded in the way services operated rather than being incidental, reinforcing cycles in which distress could escalate before restrictive interventions were used.

In response to these findings, the researchers have introduced the Carer-Inclusive Restrictive Practice Reduction (CIRP) Framework. The rights-based framework is designed to position family carers as partners in care rather than passive observers.

It sets out four stages – Recognition, Reparation, Reconnection and Reform – and calls for trauma-informed practice, shared authority with families and enforceable accountability to reduce reliance on restrictive practices described by the researchers as traumatic.

The authors propose that carer involvement should be required in care planning, commissioning standards and regulation, with the aim of improving safety, dignity and outcomes for people receiving inpatient mental health care.

Elaine Craig, lead-author, said: “Families turn to services in their most vulnerable moments, seeking care, understanding and safety. Instead, they met systems where distress is misread, voices are silenced, and people are reduced to labels rather than seen as human beings. In those conditions, care can quickly become control and harm becomes part of the system rather than an exception. Meaningful partnerships with families must be central to reform.”

The researchers said the findings have implications for NHS policy and national efforts to reduce restrictive practices, strengthen trauma-informed care and uphold the human rights of people with intellectual disabilities and autism in mental health settings.