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An increasing number of families are seeking assessment and support for autistic children who present with Extreme (or Pathological) Demand Avoidance (E/PDA) behaviours. However, research suggests the needs of these families may not be well understood or met by services. This study identifies their experiences and support needs, focussing on their interactions with services. Qualitative, semi-structured, online interviews with 21 parents of child(ren) with a formal diagnosis of autism and E/PDA behaviours. Interviews were analysed using an inductive, reflexive thematic analysis at a semantic level. Four themes describe the distinct experiences of families: (1) Understanding and acceptance of E/PDA behaviours is lacking; (2) Attributing blame: Judgements of E/PDA behaviours by others; (3) Lack of tailored support for E/PDA behaviours; (4) The E/PDA journey results in distress for all family members. Themes form the basis for a new interpretative model of familial experiences of E/PDA in which lack of understanding and acceptance of E/PDA drives neuro-normative judgements about E/PDA behaviours and parenting quality, leading to inadequately tailored support and familial distress. Parents' accounts point to a breakdown in service provision for families of children with E/PDA behaviours whose 'complex' or 'atypical' presentation of autism does not fit neatly within existing classification systems and a 'label-based' service model. Improving education and understanding about familial experiences of E/PDA behaviours amongst professionals and services, with greater 'personalisation' and 'formulation-based' approaches is urgently needed to optimise outcomes and prevent harm. • Limited research explores experiences of families of children with Extreme (or Pathological) Demand Avoidance behaviours. • 20 semi-structured interviews with 21 parents were conducted. • Findings describe four themes relating to familial experiences of E/PDA. • Judgements about E/PDA and lack of understanding and tailored support increase distress. • Increase understanding and improve outcomes by listening to those with experience of 'atypical' autism presentations. [ABSTRACT FROM AUTHOR]

Popular discourse contends that social media interactions are somehow less valid than face-to-face exchanges. Complaining about the impact of online activities can construct identity-linked cultural and moral norms. One such identity is that of 'kinship carer' - family members who step in to parent a relative's child when the birth parent is unable. From a corpus of video recordings of 10 support group discussions, we identified two ways that participants constructed family identities in topicalising Facebook use: by a) negotiating social media norms for this sensitive family context, and b) supporting their epistemic status with reference to 'mediated' properties of Facebook posts. We discuss how 'mediated evidentiality' works as a participant's resource in constructing 'what's real', thus validating speakers' identity. • Kinship carers construct norms for Facebook use in their family arrangement. • Complaints about the use of social media can construct specific identities. • 'Mediated evidentiality' offers speakers epistemic resources for arguing 'what is real'. [ABSTRACT FROM AUTHOR]

Disputes about parenting, including investments of time, can arise when families break apart. One such context is that of kinship care, where relatives (typically grandparents or siblings) take over parenting responsibilities for a child. However, little is known about the discursive processes by which 'good' and 'bad' parental identities are constructed. From a corpus of video–recordings of kinship carer support groups, we examine how time references feature in carers' complaints about birth parents. Using Conversation Analysis, we identify two forms of reference: (i) reference to "child's time", a shared cultural device concerning children's experience, and (ii) juxtaposing reported events on a timeline to infer consequentiality, thus attributing unparental motives to the birth parent. Both forms of time reference substantiate carers' inferences about birth parents' ineligibility for membership of the "good parent" category, and thus affirm their own entitlement as members, as key actions in the formulation of their complaints. We consider the implications of these findings for understanding co-constructed time-referenced devices such as "child's time", and how Conversation Analytic studies could usefully investigate what other event-relative devices may be used to accomplish different social actions, and what identities might get constructed in the process. • Time reference can be used as a members' resource to cast identity in talk. • "Child's time" operates as a cultural "device" in ascribing good and bad parenting. • Motive can be inferred by the juxtaposition of time references on a single timeline. • The design of time reference can establish common cause and peer identities. [ABSTRACT FROM AUTHOR]

Rationale Prostate cancer and its treatment have significant sexual side effects that necessitate timely patient information and open communication with healthcare professionals. However, very little is known about men's experiences of talking to clinicians about the psychosexual difficulties associated with the disease. Objective This study aims to advance understanding of men's perceptions of the communication and information challenges associated with the psychosexual aspects of prostate cancer and its treatment. Method Between October 2013 and April 2014, semi-structured interviews were conducted with 21 men from the UK who had been treated for prostate cancer. Interview transcripts were analysed using thematic analysis. Results Three themes describe the communication challenges men face: (1) It can be too soon to talk about sex; (2) the psychology of sex is missing; (3) communication is not individually tailored. Conclusions Clinicians might usefully (1) consider and discuss with patients how their psychosexual communication needs and information processing abilities may fluctuate across the cancer timeline; (2) initiate discussions about the consequences of treatment that extend beyond biological and mechanical aspects to include emotional and relational factors; (3) tailor communication to the dynamic mix of attributes that shape men's individual psychosexual needs, including their relationship status, sexual orientation, sexual motivations and values. Skills-based training in communication and psychosexual awareness may facilitate the proactive and permissive stance clinicians need to discuss sexual side effects with a heterogeneous group of patients. [ABSTRACT FROM AUTHOR]

Rationale Prostate cancer is a leading cause of cancer in men, affecting one in eight. An ageing population coupled with increased testing indicates that the incidence of early-stage prostate cancer is rising rapidly. Treatments are effective, but all can result in chronic sexual side effects and impact on the psychological, emotional and relational components of sexual functioning. Whilst the physical consequences of treatment are well documented, we lack a comprehensive picture of the effects of localised prostate cancer treatment on men’s experience of sexual intimacy and how this may affect survivorship and recovery. Objective This study synthesises the qualitative literature related to men’s experience of sexual intimacy in the context of localised prostate cancer. Methods A systematic search strategy identified 12 studies, which were assessed using a modified version of the Critical Appraisal Skills Programme. Using Noblit and Hare’s (1988) approach, a meta-synthesis was conducted. Results Findings are organised within four inter-related themes that form the basis of a new conceptual explanatory model: (i) Loss and grief: Destroyed intimacy; (ii) Going through the motions: Artificial intimacy; (iii) Fear of failure: Avoiding intimacy and (iv) Breaking barriers: Constructing an alternative intimacy. Conclusion The LMAC (Loss, Motions, Avoidance and Construction) model provides a new way of conceptualising sexual recovery following prostate cancer treatment and opportunities for health care professionals to support men and their partners. [ABSTRACT FROM AUTHOR]

OBJECTIVE: To explore transsexual patients' perceptions of communication with psychiatrists in a Gender Identity Clinic and advance understanding of patient centered communication (PCC) in psychiatric, 'gatekeeping' settings. METHODS: 21 qualitative interviews with a convenience sample of clinic patients. Interviews were coded at a semantic level and subject to an inductive thematic analysis. RESULTS: Patients' perceptions clustered into three themes: (1) aspects of communication that patients described liking; (2) aspects of communication that patients described disliking; and (3) aspects of communication that patients deemed challenging but necessary or useful. CONCLUSION: Patients described liking or disliking aspects of communication that reflect existing understandings of PCC. However, a striking feature of their accounts was how they were able to rationalize and reflect pragmatically on their negative communication experiences, welcoming doctors' challenges as an opportunity to consider their life-changing decision to transition from their natal gender. PRACTICE IMPLICATIONS: In certain clinical settings, current operationalizations of PCC may not apply. Patients' perceptions of communication may be enhanced if an analysis of their experiences formed part of the professional training of doctors, who could be invited to consider the functional specificity of communication across settings and the consequences (both immediate and post hoc) of their communication practices. [ABSTRACT FROM AUTHOR]