Jaci C. Huws

First-hand accounts of sensory perceptual experiences in autism: a qualitative analysis

Five first-hand web page accounts of unusual sensory perceptual experiences written by persons who claimed to have high-functioning autism were selected for qualitative analysis. Four core categories emerged: turbulent sensory perceptual experiences, coping mechanisms, enjoyable sensory perceptual experiences, and awareness of being different, suggesting that people with autism experience both distress and enjoyment from their sensory perceptual experiences. The use of specific coping mechanisms enabled the person to deal with the distress or difficulties experienced and helped the person derive some enjoyment from the experience. Some of these people were aware that their sensory perceptual experiences were different from non-autistic individuals, but this did not decrease the enjoyment derived from some of their sensory perceptual experiences. These sensory perceptual experiences form an integral part of the individual’s biographical embodied sense of self, and probably of autism.

Parents of Children with Autism using an Email Group: A Grounded Theory Study

Parents of children with autism have difficulties obtaining adequate information and support to guide them in the care of their children. However, the growth of communication technologies such as email has created greater opportunities for accessing such resources. This article presents a grounded theory analysis of the messages sent to an email group by parents of children with autism. The core category emerging from the analysis indicates that the group functioned in making sense of autism. The core category comprises four categories: searching for meaning; adjusting to changes; providing support and encouragement; and narrative sharing of experiences. Although email groups function as a social support mechanism, we suggest that this is not the only legitimate function: such groups may contribute towards the development of parental representations of autism.

'They just seem to live their lives in their own little world': lay perceptions of autism

The prevalence of autism spectrum disorders is believed to be higher than that of other conditions, such as Down syndrome or diabetes, yet few studies have explored the ideas lay people have about autism. Semi‐structured interviews were used to explore how 10 lay people with no knowledge or experience of autism conceptualised autism. Interpretative phenomenological analysis and discourse analysis illuminated four discourses: (1) autism as transgressing normative expectancies; (2) dependency and functional ability discourse; (3) autism and the discourse of mental status; (4) autism and explanatory discourses. Participants demonstrated clear views (although not necessarily correct) about the nature, origins and manifestations of autism. They drew upon their understanding of normal child development to make these assessments and they made judgements about the ability of individuals with autism to attain social independence. It is recommended that interactions between lay people and people with autism may help develop positive conceptualisations of autism.

‘I’m really glad this is developmental’: Autism and social comparisons – an interpretative phenomenological analysis:

The present qualitative study comprised interviews with nine young people with autism (aged 16–21 years) about their perceptions of autism. Using interpretative phenomenological analysis, three underlying themes were illuminated, and all these formed the superordinate theme Making Comparisons: (a) Changes over time: ‘I’m really glad this is developmental’; (b) Degrees of autism: ‘They’ve got it really bad’; and (c) Degrees of ability: ‘I’m not really disabled-disabled’. Such comparisons were not explicitly sought at the outset of the study, and instead emerged from their conceptualisations of the autism concept. When comparing how they perceived themselves now, and how they perceived themselves in the past, the young people viewed themselves more positively in the present. In addition, when making comparisons with other people with autism, they tended to locate themselves as being in a better position than others were. The perspective of being in a more fortunate position because of heightened abilities also emerged from the comparisons made with people who did not have autism. Furthermore, similar comparisons were made when autism was compared to disability, with autism being evaluated as being more favourable than what was termed ‘proper’ disability. The results of this study are discussed in relation to the existent social comparison literature.

Individual experiences of an acceptance-based pain management programme: An interpretative phenomenological analysis

Acceptance of pain has been found to play an important role in adjusting to chronic pain, and the evidence-base is growing with regards to the effectiveness of acceptance-based interventions such as acceptance and commitment therapy, mindfulness and contextual cognitive behavioural therapy within pain management settings. Despite the growing interest in such interventions, previous studies into acceptance-based pain management programmes (PMPs) are quantitative and the exact processes at work during such programmes remain unknown. This study aims to add to previous quantitative research in the area by qualitatively exploring individual experiences of attending an acceptance-based PMP and identifying the key constituents of the programme that participants felt facilitated change. Semi-structured interviews (n = 6) were analysed using interpretative phenomenological analysis, and five themes emerged: I’m not alone, others understand my pain, Freedom from pain taking over, A new self – one with pain, Parts of the programme participants felt facilitated change and Exercise is possible. These findings are then considered in relation to past research and relevant constructs in the literature. Implications for future research and clinical practice are also discussed alongside participant reflections and suggested areas for improvement.

Brain injury spousal caregivers’ experiences of an acceptance and commitment therapy (ACT) group

Purpose – The purpose of this paper is to understand the experiences of acquired brain injury (ABI) family caregivers who attended an acceptance based group intervention. Design/methodology/approach – A qualitative design and interpretative phenomenological analysis methodology were used. Findings – Five key themes were identified: increasing personal awareness; the dialectic of emotional acceptance vs emotional avoidance; integration of acceptance and commitment therapy (ACT) principles; peer support; and moving forward after the group. It seemed that some individuals found the ACT exercises distressing, whereas others reported benefits. All participants described experiences of acceptance vs avoidant means of coping, and attempts to integrate new approaches into existing belief systems. Originality/value – This study is the first to explore the experiences of ABI caregivers undertaking an ACT group intervention.

“We’re people who don’t touch”: Exploring clinical psychologists’ perspectives on their use of touch in therapy

There is a paucity of research that explores the use of touch within psychotherapy from therapists’ perspectives. This qualitative study explored clinical psychologists’ accounts of offering or excluding touch within therapeutic practice. Semi-structured interviews were conducted with six clinical psychologists working within adult mental health services. The interview transcripts were analysed using interpretative phenomenological analysis (IPA). Five superordinate themes emerged from the data: (1) the touch instinct; (2) touch and professional boundaries; (3) individual clients and contexts; (4) the value of touch in therapy and (5) the cost of touch in therapy. It is suggested that the perspectives of professionals and clients be given greater consideration in the future as such open discussion may serve to challenge the taboo status often surrounding the issue of touch, and highlight its potential roles in therapy.

‘I’m not the only person out there’: insider and outsider understandings of autism

Abstract Objectives: The objective of this study was to gain an insight into how people with autism spectrum disorder (ASD) view the concept of autism and how they view society’s reactions to people with this diagnosis. Methods: Nine students attending a specialist college for individuals with an ASD were interviewed about their views on the nature of autism. Once an initial qualitative analysis of their views had been completed, the analysis was sent to a person with autism and that person’s secondary analysis was also included in the present paper. Results: The results suggested an awareness of the complexity of interpersonal relationships, a desire to ‘fit in’ to a wider group, and a feeling of being regarded as ‘different’. The use of an expert author helped avoid a ‘diagnostic overshadowing’ interpretation of these findings, and located them as an interaction of age, life stage, and the presence of an ASD. Discussion: The use of an ‘expert author’ is a novel use of a qualitative methodology and specifically aided in the interpretation of the participant accounts.

Parental Bereavement and the Loss of a Child with Intellectual Disabilities: A Review of the Literature.

Inequalities in health care and other risk factors mean that children with intellectual disabilities are more likely to predecease their parents. Research on the effects on family members when a child with intellectual disability dies is sparse. In the present review, the authors describe 5 studies of bereavement in intellectual disability and then turn to general parental bereavement research to inform the field of intellectual disability. Questions for future research and some implications for services and professionals are discussed. In particular, professionals should be aware of dissatisfaction with care pre-loss, disenfranchised grief, and post-loss support needs of family members.

Working with uncertainty: A grounded theory study of health-care professionals’ experiences of working with children and adolescents with chronic fatigue syndrome:

This grounded theory study explores conceptualisations of chronic fatigue syndrome/myalgic encephalomyelitis from semi-structured interviews with 10 health-care professionals working with children and adolescents. The findings suggest that a lack of a clear empirical understanding of chronic fatigue syndrome/myalgic encephalomyelitis leads to ‘working with uncertainty’, whereby health-care professionals utilise previous experiences to make sense of the condition and inform their clinical practice. How health-care professionals make sense of chronic fatigue syndrome/myalgic encephalomyelitis may influence the labels given to young people and the interventions they receive. The findings provide insight into a currently understudied area, and highlight potential avenues for further research and clinical practice.