A randomised controlled trial of PEGASUS, a psychoeducational programme for young people with high-functioning autism spectrum disorder.

Psychoeducation is an essential component of postdiagnostic care for people with ASD (autism spectrum disorder), but there is currently no evidence base for clinical practice. We designed, manualised and evaluated PEGASUS (psychoeducation group for autism spectrum understanding and support), a group psychoeducational programme aiming to enhance the self-awareness of young people with ASD by teaching them about their diagnosis

An Initiative to Educate and Support Young Adults Diagnosed with Hypertension

An Initiative to Educate and Support Young Adults Diagnosed with Hypertension Page Tomlinson, BS, RN, DNPc Background: Hypertension is a common diagnosis in the US with significant long-term effects. While guidelines for optimal hypertension management exist, young adults lag behind older adults in treatment and control3. The young adult is arguably more capable of lifestyle changes, primarily due to fewer physical limitations than older adults. Promotion of disease self-management is the most effective way to engage young adults in seeking control over their blood pressure1,2. Lifestyle modification as a young adult decreases costs of care and risk for cardiovascular events, while lack of guidance and support at this stage of life may increase risk for cardiac events over their lifetime. This project examined disease self-management in young adults aged 18-39 years at a local primary care office. Methods. Patients aged 18-39 years with diagnosis of hypertension were identified. A questionnaire on self-efficacy in hypertension management was sent and preference for lifestyle modification counseling (LMC) was assessed. Follow up calls placed. Semi-structured interviews conducted. Provider survey conducted. Results: Three patients discussed their experience of being diagnosed with hypertension in semi-structured interviews. Fourteen patients were not interested in participating. Provider survey (n=7) response 100%. Patient information handout created. Conclusions. While the literature demonstrates the positive effect of LMC on outcomes in hypertensive young adults, efforts to engage this population proved challenging. Young adults desire consistent guidance and support with lifestyle modification yet are unwilling to engage in lifestyle modification when they are asymptomatic and do not have rapport with the offering provider. Key Words: hypertension, young adult, support, lifestyle modification Word count [246] References: Johnson, H., Olson, A., Lamantia, J., Kind, A., Pandhi, N., Mendonça, E., Craven, M., & Smith, M. (2015). Documented lifestyle education among young adults with incident hypertension. Journal of General Internal Medicine, 30(5), 556-64. Trento, M., & Porta, M. (2012). Structured and Persistently Reinforced Patient Education Can Work. BMJ: British Medical Journal 345, e5100. Zhang, Y. E., & Moran, A. (2017). Trends in the Prevalence, Awareness, Treatment, and Control of Hypertension Among Young Adults in the United States, 1999 to 2014. Hypertension, 70(4), 736-742

Barriers and facilitators to self-management in people living with and beyond cancer (PLWABC): a systematic review of qualitative evidence (PROTOCOL)

Review question The review objectives are: To identify, evaluate and synthesise qualitative evidence that has explored the perspectives of people living with and beyond cancer regarding self-management. To utilise this data to identify, explore and explain the potential barriers and facilitators to self-management in people living with and beyond cancer. Condition or domain being studied: Engagement (or lack of) in self-management practices/behaviours, support and resources in adults (≥18) with any diagnosis of cancer who have completed treatment for cancer. Whilst there is no universal definition of self-management, in cancer survivorship, it has been defined as “awareness and active participation by the person in their recovery, recuperation, rehabilitation, to minimise the consequences of treatment, promote survival, health and wellbeing” (DH, Macmillan Cancer Support, NHS Improvement, 2013). This definition will be used for the purposes of this review

Experience of Women with a Diagnosis of Obstructive Sleep Apnea (OSA): A Dissertation

This qualitative descriptive (QD) study examined the experience of the woman newly diagnosed with obstructive sleep apnea (OSA). The study employed Leventhal’s Self- Regulatory Theory to understand women’s illness representation of OSA, cognitive and emotional coping, and situational appraisal skills in coming to terms with OSA. The specific aims were to: 1) Describe the illness representation of women with a recent diagnosis (within one year) of OSA; 2) Describe the cognitive perceptions and emotional response to diagnosis and treatment of OSA in this sample of women; and, 3) Describe the meaning of OSA and the coping strategies used by this sample of women. The overarching theme of this study of a life-altering diagnosis required participants to process the health threatening information in both a conceptual and concrete process for dealing with both the physical and emotional aspects. The first two subthemes that emerged were Making sense of it, and Making it work as the women came to terms with their symptoms, diagnosis, and adapted to their treatment. For this sample of women, both acceptance (acknowledging the diagnosis of OSA and embracing treatment), and denial (not convinced of diagnosis or need for treatment, seeking alternatives) were factors in how they made sense of the situation. The making it work subtheme dealt with the women’s experiences adapting to treatment both physically and emotionally, including the appraisal, reconsideration and adjustments when they encountered difficulties and delays. A fluid iterative process included women participants describing how they appraised their situation often moving back and forth between acceptance, denial, seeking alternatives, struggling with treatment and moving forward. In both of these subthemes, family support and the stigma of OSA and CPAP were involved in how the women accepted and adapted to treatment. The third subtheme that emerged was Paying it forward as many women felt the obligation to help themselves by adapting a healthier lifestyle for themselves, their families and to assist others impacted by OSA. Women spoke of paying it forward by offering information and support to others not yet diagnosed, or are struggling with diagnosis and treatment. Many of these women were staunch advocates for other women to be tested, for HCPs to be more aware, to be more attuned to women’s sleep history, and to refer women for treatment. Implications of these findings include enhancing recognition and awareness by women of OSA symptoms, the need for diagnostic evaluation, and partner awareness as an important component of diagnosis and successful treatment for women. Study findings support recognition of women’s presentation of OSA including unusual symptoms for earlier diagnosis and treatment. Sleep partner awareness and support appear to be relevant to women in acceptance of a life altering diagnosis. Further exploration of modifiable factors such as prompt diagnosis and individualized treatment of women with OSA could also impact potential co-morbidities. Provision of further education and awareness by HCPs and insurance companies that women may not present with classic symptoms of OSA is also needed. Targeted interventions specific to women’s experiences with OSA include development of screening tools, care guidelines and treatments that enhance applicability, acceptability, and patient satisfaction. Future advocacy work will also require supporting women in “paying it forward” to help other women diagnosed with OSA

Self-Diagnosis in Psychiatry and the Distribution of Social Resources

I suggest that the diagnosis that an individual self-diagnoses with can be influenced by levels of public awareness. Accurate diagnosis requires consideration of multiple diagnoses. Sometimes, different diagnoses can overlap with one another and can only be differentiated in subtle and nuanced ways, but particular diagnoses vary considerably in levels of public awareness. As such, an individual may meet the diagnostic criteria for one diagnosis but self-diagnoses with a different diagnosis because it is better known. I then outline a potential negative consequence of this. Psychiatric diagnoses can grant access to what I call social resources, namely, political advocacy, campaigning for support, participating in scientific research, building diagnostic cultures, and opportunity for social interactions with people who have the same diagnosis. The strength of the social resources for a particular diagnosis can be made stronger when more people have that diagnosis. As such, inaccurate self-diagnosis can result in the social resources for one diagnosis being strengthened whilst not being strengthened in relation to another diagnosis in comparison to accurate diagnosis. This shows how inaccurate self-diagnosis can alter the distribution of social resources. We need to consider whether this is unfair to people who are diagnosed with less well-known conditions

Living with joint hypermobility syndrome: patient experiences of diagnosis, referral and self-care.

BACKGROUND: Musculoskeletal problems are common reasons for seeking primary health care. It has been suggested that many people with 'everyday' non-inflammatory musculoskeletal problems may have undiagnosed joint hypermobility syndrome (JHS), a complex multi-systemic condition. JHS is characterized by joint laxity, pain, fatigue and a wide range of other symptoms. Physiotherapy is usually the preferred treatment option for JHS, although diagnosis can be difficult. The lived experience of those with JHS requires investigation. OBJECTIVE: The aim of the study was to examine patients' lived experience of JHS, their views and experiences of JHS diagnosis and management. METHODS: Focus groups in four locations in the UK were convened, involving 25 participants with a prior diagnosis of JHS. The focus groups were audio recorded, fully transcribed and analysed using the constant comparative method to inductively derive a thematic account of the data. RESULTS: Pain, fatigue, proprioception difficulties and repeated cycles of injury were among the most challenging features of living with JHS. Participants perceived a lack of awareness of JHS from health professionals and more widely in society and described how diagnosis and access to appropriate health-care services was often slow and convoluted. Education for patients and health professionals was considered to be essential. CONCLUSIONS: Timely diagnosis, raising awareness and access to health professionals who understand JHS may be particularly instrumental in helping to ameliorate symptoms and help patients to self-manage their condition. Physiotherapists and other health professionals should receive training to provide biopsychosocial support for people with this condition

Girls/women in inverted commas – facing ‘reality’ as an XY-female

XY-women with conditions such as Androgen Insensitivity Syndrome (AIS) have male sex chromosomes, internal (abdominal) testicular or gonadal streak tissue, and no ovaries or (usually) uterus, but are otherwise female in body form and gender identity/role. Many have no reason to doubt a female sex until they are investigated for failure to menstruate. Using mixed-method (quantitative and qualitative) empirical methodology, the study reveals how XY-women discovered their diagnosis, with an in-depth analysis of the medical and societal discourses that shaped the labels/identities to which they have been subjected or they have assumed. Data was collected by questionnaire from 114 women recruited via a peer support group. The study is interdisciplinary, spanning medicine, psychology, sociology and feminist gender theory. It is informed by a range of theories including patriarchy and medicalisation (including terminology issues), sexual dimorphism, sex versus gender, social construction, abjection, self-surveillance and performativity, and sexual difference and corporeality. Many participants had experienced diagnostic secrecy by doctors, particularly in N. America. Younger participants had benefited from a recent move to truth disclosure. Participants had found the androcentric medical discourse/terminology difficult to reconcile with their female appearance, identity and social role; and did not approve of the degree of medicalisation. Infertility was the greatest personal concern but most thought that possession of a vagina was society's main criterion for womanhood. Most seemed secure in their female gender, although some were aware of a degree of performativity. Knowledge of their male biological attributes seemed problematic for many (especially those with Swyer Syndrome1), with expressions of inauthenticity, fraud or freakishness by some. Participants showed little awareness of gender theory and even the idea of a sex versus gender conceptual split seemed confusing for many, but clearer to those in N. America. The majority seemed to construct a totally female sex, although some entertained the idea of an intersexed sex, particularly those in N. America and those with a lesbian or bisexual orientation. The lesbian/bisexual sub-group, and those with a PAIS diagnosis, also showed the greatest awareness of gender performativity. Advocacy is a key aspect of the project, developing the argument that the androcentric focus of intersex medicine and the poor provision of clinical psychology restricts the opportunities for these patients to explore alternative discourses and non-medical meanings of their diagnosis. 1. But needs clarifying using a larger sample

Psoriasis today: experiences of healthcare and impact on quality of life in a major UK cohort

Aim: To establish how people with psoriasis in the United Kingdom today experience living with their condition including diagnosis, treatment, healthcare provision and impact on daily life. Background: Psoriasis is a debilitating long-term inflammatory skin disease which can result in severe itching, discomfort and soreness, and may be associated with problems beyond the specific symptoms related to the skin. For many it is accompanied by difficult-to-manage treatment regimes, emotional distress and a negative impact on their quality of life and psychosocial functioning. To date there is little published information about the health experiences of people in the United Kingdom with psoriasis. Methods A postal self-administered questionnaire was completed by members of the Psoriasis Association and the responses analysed (n=1564). Findings The findings suggest some similarities to surveys in other nations, but specifically highlighted that patients feel under-informed and are dissatisfied with current treatment regimes. Responses provided an insight into aspects of the condition that treatments should be targeting. Specific areas of negative impact on psychosocial functioning were identified, including the lack of available support for those experiencing emotional distress. The research provides important information about how the care of patients with psoriasis can be improved, especially at primary care level. This includes: improved training in psoriasis knowledge and awareness at general practitioner level and greater use of dermatology specialist nurses in primary care settings; more effective and manageable treatment regimes that target visible areas and general well-being; greater support for emotional distress and psychosocial functioning.Peer reviewedFinal Accepted Versio

Implementing chronic care for COPD: planned visits, care coordination, and patient empowerment for improved outcomes

Current primary care patterns for chronic obstructive pulmonary disease (COPD) focus on reactive care for acute exacerbations, often neglecting ongoing COPD management to the detriment of patient experience and outcomes. Proactive diagnosis and ongoing multifactorial COPD management, comprising smoking cessation, influenza and pneumonia vaccinations, pulmonary rehabilitation, and symptomatic and maintenance pharmacotherapy according to severity, can significantly improve a patient’s health-related quality of life, reduce exacerbations and their consequences, and alleviate the functional, utilization, and financial burden of COPD. Redesign of primary care according to principles of the chronic care model, which is implemented in the patient-centered medical home, can shift COPD management from acute rescue to proactive maintenance. The chronic care model and patient-centered medical home combine delivery system redesign, clinical information systems, decision support, and self-management support within a practice, linked with health care organization and community resources beyond the practice. COPD care programs implementing two or more chronic care model components effectively reduce emergency room and inpatient utilization. This review guides primary care practices in improving COPD care workflows, highlighting the contributions of multidisciplinary collaborative team care, care coordination, and patient engagement. Each primary care practice can devise a COPD care workflow addressing risk awareness, spirometric diagnosis, guideline-based treatment and rehabilitation, and self-management support, to improve patient outcomes in COPD

What’s in a label? An exploration of how people acquire the label ‘autistic’ in adulthood and the consequences of doing so

Background. Since the 1960s the estimated prevalence of autism has increased. This has been accompanied with greater public awareness of the condition and a growing demand for diagnosis, particularly in adulthood. For sociologists, diagnoses such as autism play a fundamental role in modern social life. As well as organising the clinical picture for patients – determining their prognosis and treatment options – diagnoses also have the capacity to change how a person thinks about themselves and other people. Previous research has shown that obtaining an autism diagnosis in adulthood comes with significant benefits (greater self-awareness and access to support services) as well as some undesirable drawbacks (shame and a sense of helplessness). Yet a medical diagnosis is not the only way of acquiring the label. An individual can also label themselves – that is, self-identify – as autistic, and they can be labelled as such by other autistic people. To date, little has been done to investigate these other ways of acquiring the label, and more broadly the implications of being labelled autistic, by any means, have yet to be clearly theorised by sociologists. I aim to address these gaps in this study. Methods. I conducted a qualitative study in order to answer the question: “How do people come to be labelled, or to label themselves, as autistic in adulthood, and what are the consequences of doing so?” Using snowball and theoretical sampling, I recruited twenty-one autistic adults, eleven with a medical diagnosis and ten who self- identified as such, to take part in two loosely structured qualitative interviews (forty-two interviews in total). These accounts were analysed using a method called situational analysis, a form of constructivist grounded theory. Findings. I present three theoretical concepts that illustrate how people go about acquiring the label autistic and what it means to live with it. The first is the concept of the ‘sticky-slippy’ label, which is a figurative expression used to illustrate some of the properties of the label autistic. Once acquired, the label has an inherent ‘stickiness’ to it (a sense of permanence) whilst at the same time exhibiting more ‘slippery’ qualities (a fluid and shifting prominence in a person’s identity). The second concept relates specifically to people self-identifying as autistic and their reasons for doing so, which are conceptualised as four different ways: (1) somebody who self-identifies as autistic as a precursor to seeking a medical diagnosis, (2) somebody who self-identifies as autistic despite a negative diagnosis, (3) somebody who self-identifies as autistic as an alternative to a diagnosis, and (4) somebody who self-identifies as only having autistic traits. The third concept relates to the practice of autistic lay people labelling other lay people as autistic (which I call a ‘lay diagnosis’). Within this, I distinguish between ‘passively spotting’ and ‘actively seeking’ autism in others. Discussion. The ambition of this study is to provide a conceptual vocabulary for thinking about the nature of the label autistic, the different ways in which people can acquire it, and the implications of doing so. The concepts presented here may be applicable to other physical and psychiatric categories, of which autism serves as an illustrative example. The concept of the sticky-slippy label offers a means of understanding and reporting the consequences of being labelled autistic, something that is markedly absent in the current literature. The four ways of self-identification represent a sustained engagement with the growing phenomenon of people labelling themselves as autistic, which may be of interest to those researching the self-identification or self-diagnosis of other psychiatric conditions. Finally, I open the door on a potentially interesting research agenda: the act of lay people diagnosing other lay people with physical and psychological afflictions – lay diagnosis – which could sit alongside current research endeavours within the sociology of diagnosis