Transparency and coherence Transparency was demonstrated through the presentation of excerpts of the text to evidence the themes developed and allow the reader to discern and identify the patterns. The use of a reflective diary throughout the research process also allowed for consideration of the researchers influence on the data and its interpretation and is discussed further in Appendix 1. As well as individual supervision with a more experienced qualitative researcher, a peer supervision group of fellow Trainee Clinical Psychologist using IPA was established. This group was used to reflect on the process of using IPA and to explore the impact of the researcher on the collection and analysis of data. Following coding and analysis of transcripts a fellow member of this group was given an extract of a transcript to read and code and similarities and differences in the coding were discussed. Both the researcher and peer observed similar themes in the data, with some differences which were understood by the impact of reading the transcript for the first time versus having conducted and transcribed the interview. Impact and importance At a time when ASC’s are more widely discussed in the mainstream media and in government policies (e.g. DoH, 2014) ensuring that the voice of those people with a lived experience of the condition is crucial. It is through qualitative research that clinicians can make these voices heard in a way that can hope to be heard by other professionals working in this field.
Table 1. Overview of studies included. Author(s), year and Participant details Approach and method Results Conclusions Strengths Limitations Huws, Robert and Jones. (2008) Diagnosis, disclosure and having autism: an interpretative phenomenological analysis of the perceptions of young people with autism. Nine participants. Three female, six male. Age ranged from 16-21 years. Diagnosis of ASC confirmed by psychologist who recruited participants, but did not carry out research. Participants gave verbal confirmation of diagnosis. Qualitative. IPA Semi-structured individual interviews. Credibility assessed: Field notes made after each interview, which were used to develop a reflective log at end of each of two days of interviewing. These were referred to during analysis. External auditor made checks. Superordinate theme: diagnosis, disclosure and having autism. Five themes: 1. Disclosure delay. Delay between diagnosis and being told. 2. Providing explanations. Able to retrospectively understand life events. 3. Potential effects of labelling. Both positive and negative. 4. Disruptions and opportunities. Disruptions of previous life with access to ASC services. 5. Acceptance and avoidance. Initially difficult to accept and then accommodated for some. On-going dislike of diagnosis for others. ASC as an “absent presence”. Possible impact of diagnosis on and biography. Biographical disruption leads to questioning of assumptions and behaviours, and of biography and told about diagnosis of ASC can create a sense of uncertainty and loss of sense of self. Explanation of IPA and guidelines used. Participants described in detail - reader able to situate the sample. Quotes used ground conclusions in the data. Transparency of data collection. External auditor checked analytical interpretations. Research is relevant and highlights areas for future research. No explanation of theories of diagnosis or disclose in wider literature. No explanation of why 2 participants were not referred to in the results. Absence of discussions about reflexivity and impact of the researchers on the data.
Author(s), year and title Participant details Approach and method Results Conclusions Strengths Limitations MacLeod and Johnston. (2007) Standing out and fitting in: a report on a support group for individuals with Asperger syndrome using a personal account. One participant (second author). Female. Age not stated. Received diagnosis at 52. Case study. Description of support group given. Edited transcript of a question and answer session from a workshop presented by authors is given. Questions and answers were given in written form in the presentation (as this is the preferred way of second author). Diagnosis specific information (quotes chosen by reviewer): ‘I desperately to find out what was wrong with me. I had seen a [TV] programme about young children with autism’ (p85). Following diagnosis ‘When I got home and thought it over I felt like killing myself” (p85). ‘The diagnosis (...). confirmed my suspicions, that I had a really good mind, was trying to function through a physical organ (my brain) which doesn’t work properly. The consequences of this are that I can do virtually nothing with these abilities’ (p85). More support needed for social difficulties and for period immediately diagnosis. Policy makers need to revise judgements of what constitutes acceptable goals and place value on process rather than product. Need for more emphasis on the experience of participants when evaluating the efficacy of models. Participant article ensuring that the article reflects her experiences. There was no analysis of the transcript. No analysis of data. The transcript presented was edited, but it is not explained how it was edited.
Author(s), year and title Participant details Approach and method Results Conclusions Strengths Limitations Prince. (2010) An exceptional path: an ethnographic narrative reflecting on autistic parenthood from evolutionary, cultural and spiritual perspectives. One participant (author). Ethnographic approach. Sharing her story as a person with an ASC. No analysis of data. Diagnosis specific information from transcript (quotes chosen by reviewer): “It was only a few years ago that I was told that there was a name – AS, a form of high functioning autism – for what made me the kind of anthropologist I am and what leads me to ignore traditional definition and delineations” (p57). Complex challenges of living with autism Reviewer’s interpretation: Diagnosis did not feel very important to the author. Only 12 lines discuss diagnosis. At the time of diagnosis author describes being more interested in recent scientific article about the colour of the universe being beige and how this related to herself. Conveys the reality of the author’s lived experience. Discussion of the author’s values and how this impacts on the Links made between author’s experiences and anthropological theories. No external analysis available. trial.
going Author(s), year and title Participant details Approach and method Results Conclusions Strengths Limitations Punshon, Skirrow and Murphy. (2009) The ‘not guilty verdict’: psychological reactions to a diagnosis of Asperger syndrome in adulthood. Ten adults, seven male, three female. Current ages 22-45 Received diagnosis after 18th birthday, age at diagnosis ranged from 21-44 years. All part of a service for adults with AS (formal diagnosis made within this team). Qualitative. IPA Members of focus group in the service assisted with the development of the interview schedule (did not form part of the final sample). Semi-structured interviews carried out with participants. Credibility: Themes validated through peer support group of other doctoral level researchers and a second researcher analysing a sample of the data. Six superordinate themes: 1. Negative life experiences: Not feeling accepted, or that they fit it, being bullied. 2. Experience of services (pre-diagnosis): Lifelong experiences of MH services. Misdiagnosis. Delays in diagnosis. Mistrust of services. 3. Beliefs about symptoms of AS: feelings of difference and a desire to be ‘normal’. Attempts to mask symptoms of AS. 4. Identity formation: Experienced life without an understanding of difficulties. Internalising other people’s ideas of being ‘weird’, ‘strange’ and ‘odd’. Lack of understanding Broadly supports findings of previous research. Importance of receiving a diagnosis in order to provide an explanation of ones experiences and to access support. Bereavement / cognitive stress models cannot account for the experiences of adults receiving a diagnosis of AS. Diagnosis should not be considered a single event but a process that spans Exploration of theories of diagnosis so reader can link current findings to literature. Explanation of IPA given. Process of data collection and analysis transparent. Credibility checks made a peer supervision group. Quotes used ground the conclusions in the data. Implications for services and future research clearly identified. Not clear which author(s) carried out interviews and impact this might have on data. No discussion of the context or values of researchers and potential effects of researcher on data.
were to confirm whether the themes suggested were supported by the participant’s discourse. contributing to other MH problems. 5. Effects of diagnosis on beliefs: For most, diagnosis provided framework within which to understand previous experiences and exoneration from blame for previous difficulties. Diagnosis provided access to services and support. Experience of negative emotions also, of loss and anger, and of lack of ‘cure’ for AS. 6. Effect of societal views of AS: For some, families were not surprised by diagnosis, some families relieved by diagnosis. Negative reactions from some families. Lack of understanding in society about what AS is. many months / years. Support the view that early diagnosis is associated with positive psychological outcomes.
Author(s), year and title Participant details Approach and method Results Conclusions Strengths Limitations Sandell (2013) Participating in diagnostic experience: adults with neuropsychiatric disorders. 15 participants, four men, 11 Age years. Recruited from a neuro outpatient clinic in Sweden. 10 received a diagnosis of ASC and seven of ADHD. Qualitative. Content analysis. Participants involved during diagnosis: Involved in discussions of validating assessment results. Opportunities to accept or decline diagnosis. Able to select services that they wanted. Able to give suggestions for services not offered. Swedish version of the OPHI-II used to consider experience of diagnosis, with the critical event of focus being the Predetermined categories from the OPHI-II used for coding. 1. Occupational Identity: Experience of receiving diagnosis allowed for meaning to be attached to lifelong experience of not fitting in. Labelling problems allowed 2. Occupational competence: Availability of support and choice were essential.. 3. Social Environment: Positive diagnostic experience because of focus on the client as a person and being treated with understanding and respect. Understanding the individual’s life before diagnosis allows for rediscovery of self as an individual with a disability and discovery of new meaning in occupational roles and relationships with others. Support and validation provided during diagnostic experience allowed participants to understand others and improve relationships. Participation in the diagnostic process Grounding in previous literature on diagnosis. Process of data collection and analysis is transparent. Quotes used ground the conclusions in the data. Data examined by an external researcher with theoretical and practical knowledge of the measures used to ensure credibility of results. Implications of research for services discussed and areas No explanation of what content analysis is or it’s theoretical underpinnings. No discussion of the context or values of researchers and potential impact of researcher on data. Not able to separate out ADHD and ASD results. Authors acknowledge results are not generalizable and that further
diagnosis of ASC or ADHD. appeared to lead to positive outcomes. for future research clearly identified. research is required. Author(s), year and title Participant details Approach and method Results Conclusions Strengths Limitations Shtayermann. (2009) An exploratory study of the stigma associated with a diagnosis of Asperger syndrome: the mental health impact on the adolescents and young adults diagnosed with a disability with a social nature. participants. Diagnosis of AS verified during researcher conversation with parent. Mean age at diagnosis – 11.8 years. 90% participants were male. Mean age 19.7 years. Quantitative. Exploratory design. Self-administered questionnaires completed by participants and one parent by mail / web. Measure: Stigma - yes/no questions. Depression / anxiety - PHQ-A. Severity of AS symptoms - Krug Asperger’s Disorder Index. Peer victimisation - 20% met criteria for Depressive Disorder. 30% met criteria for Generalised Anxiety Disorder. 60% had additional psychiatric diagnosis 89% were on medications related to Asperger Syndrome. Severity of AS symptomology negatively correlated with degree of peer victimisation (r= p=.001). AS symptomology negatively correlated with level of stigma (r=-.99, p=.001). The following correlations not be tested due to small sample size: Peer victimisation and suicidal ideation. Stigma and suicidal ideation. Victimisation and suicidal ideation Stigma and suicidal ideation Higher levels of victimisation reported in young adults compared to adolescents. Higher levels of victimisation reported in young Collected data from multiple sources (child and parent). Use of standardised measures to assess anxiety and depression (Patient Health Questionnaire for Adolescents) and AS symptomology (Krug Asperger’s Disorder Index). Authors acknowledge that lack of control group was a limitation.
the world differently than what others seem to” people with ASC. Author(s), year and title Participant details Approach and method Results Conclusions Strengths Limitations Sperry (1998) From the inside looking out: A view of the world as seen by one with Asperger syndrome One participant. Male (Sam). 46 years old. Case study. Author interviewed Sam. Sam edited paper. Diagnosis specific information (quotes chosen by reviewer): ‘no man’s land of a lack of diagnosis’ (p84). Sam’s opinion that diagnosis in childhood also comes with the difficulty of being labelled. “The label autism almost acted as a blindfold, so that the child’s personality and talents are often neglected or mishandled” (p84). During process of his son’s diagnosis of ASC, “Through gathering material for his son, [Sam] became convinced he was autistic” and sought his diagnosis (p84). Sam’s main goal is to educate and advise people who may have AS, but are as yet undiagnosed Sam edited the article, gives reader confidence that the paper reflects his lived experience No analysis of the interview transcript.
Glazzard, J. & Overall, K. (2012). Living with autistic spectrum disorder: parental experiences of reasing a child with autistic spectrum disorder (ASD). Support for Learning, 27, 37-45. Hayes, S. A., & Watson, S. L. (2012). The impact of parenting stress: a meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43, 629 – 42. Horn, N., Johnstone, L & Brooke, S. (2007). Some service user perspectives on the diagnosis of borderline personality disorder. Journal of Mental Health, 16, 255-269. Hubbard, G., Kidd, L & Kearney, N. (2010). Disrupted lives and threats to identity: the experiences of people with colorectal cancer within the first year following diagnosis. Health, 14, 131-146. *Huws, J. C. & Jones, R. S. (2008). Diagnosis, disclosure and having autism: an interpretative phenomenological analysis of the perceptions of young people with autism. Journal of Intellectual and Developmental Disability, 33, 99-107. Kanner, L (1943). Autistic Disturbance of Affective Contact. Nervous Child, 2:217-250 Keenan, M., Dillenburger, K. Doherty, A. Byrne, T & Gallagher, S (2010). The experiences of parents during diagnosis and forward planning for children with autism spectrum disorder. Journal of Applied Research in Intellectual Disabilities, 23, 390-397. A., Klang, B. & Fagerberg, I. (2011). Learning to live with illness: experiences of persons with recent diagnoses of diabetes mellitus . Scandinavian Journal of Caring Sciences, 25, 558-566.
Williams, D. (1992). Nobody Nowhere. Jessica Kingsley Publishers, England. Williams, D (1994). Somebody Somewhere. Jessica Kingsley Publishers, England. Wing, L (1996). The autistic spectrum, new updated edition. London: Robinson. World Health Organisation, (1992). International Statistical Classification of Diseases and Related Health Problems 10th Revision. Yardley, L. (2000). Dilemmas in qualitative health research. Psychology and Health, 15, Young, S., Bramham, J., Gray, K., & Rose, E.(2008) The experience of receiving a diagnosis and treatment of ADHD in adulthood: a qualitative study of clinically referred patients using interpretative phenomenological analysis. Journal of Attention Disorders, 11, 493-503.
Assessments Year I Assessments Programme Component title of assignment Fundamentals of Theory and Practice in Clinical Psychology (FTPCP) Wechsler Adult Intelligence Scale-IV Report Practice case report Assessment and formulation of a in her early forties presenting with obsessive compulsive disorder and agoraphobia using a cognitive behavioural approach. Problem Learning – Reflective Account A reflective account of the problem learning task “The Relationship to Change”. Research – Literature Review A review of the literature on the experience of receiving and coming to terms with a diagnosis of an Autism Spectrum Condition. Adult – case report Cognitive Behavioural Therapy with a in her early forties presenting with panic disorder with agoraphobia. Adult – case report Cognitive Behavioural Therapy with a woman in her seventies presenting with depression. Research – Qualitative Research Project Heterosexual males’ attitudes towards same sex parenting Research – Major Research Project Proposal How do people understand the role than an Autistic Spectrum Condition diagnosis plays in their identity? Year II Assessments
Programme Component assessment Research - SRRP An evaluation of clinical supervision received within the Surrey and Borders Partnership NHS Foundation Learning Disability directorate. Research – MRP Portfolio How do people understand the role that a diagnosis of an Autism Spectrum Condition plays in their identity? An interpretative phenomenological approach. Personal and Professional Learning – Reflective Account My relationship with me, a reflective account of the experience of clinical training. Older Adult – Case Report A neuropsychological assessment with a man in his 70’s presenting with memory problems.