Using service user and clinical opinion to develop the SAINT: a guided self‐help pack for adults with intellectual disability

Abstract

PurposeIn spite of the greater prevalence of mental ill‐health in people with intellectual disabilities, there has been little work specifically aimed at how this group recognise threats to their mental health and the strategies used to minimise them. This study aims to look at the first stage of development of a guided self‐help (GSH) pack called the Self Assessment and INTervention pack (SAINT).Design/methodology/approachDelphi methods and focus groups were employed to gather opinions from two expert groups: professionals or clinical experts (ranged N=15‐33); and service users (n=9), to inform the contents of the SAINT. The Delphi was conducted by e‐mail. Results from each round were shared between the two groups to develop a consensus.FindingsRetention rates for clinical experts were 45.45 per cent, during the Delphi and 100 per cent for the service user experts in the focus groups. Both groups were able to reach a consensus of the items that would make up the SAINT. Delphi methods combined with focus groups were able generate the contents of the SAINT and demonstrated versatility in this dual approach by being able to gain a consensus from both groups.Research limitations/implicationsThere is no consensus as to how many people are ideal for a Delphi. Although the final number in round 3 was low, it can be argued that those remaining had most interest in the subject.Practical implicationsThe aim is to produce and pilot the SAINT, a GSH package for people with intellectual disabilities, following reliability and validity testing.Social implicationsCurrently GSH is widely used for mild depression in Primary Care and other disorders such as mild anxiety, obsessive compulsive disorder, and other related conditions. However, there are no specific GSH packages for people with intellectual disabilities. Currently the GSH tools that are available are not designed for people with cognitive impairments and do not reflect the lifestyles of many people with intellectual disabilities.Originality/valueThis paper should be of value to anyone with an interest in supporting people with intellectual disabilities to recognise and manage specific symptoms or feelings that threaten the person's mental well being.