Mental Health Inpatient Experience of Patients with Autistic Spectrum Conditions: a Phenomenological Study

Abstract

Aims This study is pertinent to the current political and policy driven climate regarding increasing rights, choices, inclusion, independence and awareness for people with autism spectrum conditions (ASC). Since the implementation of Transforming Care (NHS England, 2015), commentators have focused upon the reduction of hospital beds within learning disabilities and mental health services. This qualitative study explored how patients with ASC, a group known to be extremely vulnerable to psychological issues, experience admission to acute mental health inpatient facilities in the United Kingdom (UK). Anxiety is a common characteristic for people who live with ASC, but its recognition can be compounded by the difficulty in disentangling features of ASC from those of anxiety disorders. Despite growing acknowledgement that admission to acute mental health facilities should be a last resort, reported figures on admissions continue to rise (NICE, 2014) and there remains a dearth of research highlighting how those who are most vulnerable in the inpatient setting experience this environment. The lived experiences of those with ASC could nonetheless help to inform service development.

Method During 2015-2017 phenomenological enquiry using qualitative methods facilitated one-to-one semi-structured interviews to capture the experiences of 20 adults from the East of England who were former psychiatric inpatients with an established diagnosis of ASC. Verbatim transcripts of audio recordings from each interview were analysed using Interpretative Phenomenological Analysis (IPA).

Findings IPA enabled the identification of broad themes, which explained in rich detail participant reflections on the situations and events within the acute care mental health facilities that triggered responses such as anxiety, fear, agitation and social avoidance anxiety. It was then possible to establish the broad behavioural patterns associated with their responses some of which has been reported by other commentators i.e., isolating themselves from others, including other patients and staff; ceasing to eat and sleep adequately; and, all too often, self-harming or exhibiting aggressive and violent behaviours (Lidstone et al., 2014; Donna et al., 2010; Bunyan et al., 2017). Emergent new themes were discovered in the same way and the original contribution of this research includes; creative self-help strategies to deal with anxiety, the notable impact of the sensory environment, interesting relational patterns with family/friends, staff and peers, including the disconnection from family and friends and confused connections to staff and peers.

Implications This study provides further evidence that hospitalisation of a person with ASC should be the last resort. However, it is inevitable that in the future some people will need a mental health inpatient bed and the reductionist approach to inpatient services and the emergence of single person community services, whilst warranting applause, will leave gaps in service provision. Therefore, the thesis contends that instead of minimising inpatient availability to an unrealistic level, mental health care providers should concentrate on the emotional and psychological experiences of the inpatients aiming to improve their service experience, raise awareness of ‘different’ service users; highlighting the ‘different’ issues for them, i.e. elsewhere their vulnerability due to relationship problems with their family and friends, and building relationships with staff which many have indicated as crucial to their feelings of safety and security. Equally, understanding the sensory profile of the inpatient environment from an autistic perspective can provide the practitioner with some easily implemented reasonable adjustments which can have a significantly positive impact with the help of highly motivated staff who are person-centred in their approach. Additionally, increasing the practitioner’s awareness of the causes and coping mechanisms to anxiety will contribute significantly to helping inpatients with ASC to cope with their situation and find improved ways to manage and look forward.