When Black and White Medicine Turns Gray: Exploring the Interplay and Meaning of Discoursing about Parenting a Child with a Complex Chronic Condition

Parents of children diagnosed with complex chronic conditions (CCCs) face many challenges with managing their child\u27s health. As parents are tasked with competing demands and the constant changes required to provide the best care possible for their child, talk about contradictions regarding their dual, and oftentimes competing, roles and responsibilities as both parent and caregiver is likely to occur. Using relational dialectics theory (Baxter, 2011) as a framework, we conducted a contrapuntal analysis to analyze 35 White, mostly Christian parents’ narratives about their experiences managing their child’s healthcare. Two primary discourses emerged: the centripetal discourse of normal health and the centrifugal discourse of difference. The interplay between these two primary discourses led to a hybrid discourse: difference is our new normal. Within this discourse, parents discussed previous speech encounters where they relied upon the co-construction of a new normal with others who were living or willing to live in their new reality. Our findings emphasize how an assessment of parents’ talk conveys their discourse-dependence with navigating the inevitable uncertainties associated with managing their child’s CCC. In addition, we discuss how parents co-construct their new normal in the face of unique family functioning that is structurally different from societal expectations and social norms about parenting and pediatric health care management

Dilemmas in fetal medicine: premature application of technology or responding to womens choice?

Copyright @ 2006 The Author.It is argued that innovative health technologies (IHTs) may be changing the roles of both patients and health practitioners, and raising new issues, including ethical, legal and social dilemmas. This paper focuses on the innovative area of fetal medicine. All fetal treatment necessitates accessing the fetus through the pregnant woman's body, and non-surgical treatments have long been a part of pregnancy care. However, recent developments in this area, including the increasing routinisation of sophisticated antenatal ultrasound screening and the introduction of treatments including fetal surgery, may mark a shift in this specialty. The paper explores such shifts from the perspectives of medical and midwifery practitioners working in two Fetal Medicine Units. It examines the apparent effects of the orientation of fetal medicine on prevalent conceptualisations of the maternal-fetal relationship, and some of the consequences of this. It is argued that new forms of uncertainty, including complex risk and diagnostic information, and uncertain prognostic predictions set within the rhetoric of non-directive counselling and women's choice, are leading to unprecedented ethical dilemmas within this area. More widespread debate about such potential dilemmas needs to take place before, rather than following their introduction.This study is supported by the Wellcome Trust Biomedical Ethics programme and the ESRC Innovative Health Technologies Programme (grant number L218252042)

Primary care givers experience of taking care of children with intellectual disability in Mpumalanga Province, Bushbuckridge region

Master of Arts in Psychology by coursework and research report Department of Psychology University of the Witwatersrand 2017In South African communities, especially rural societies, people have little or no knowledge about intellectual disabilities (ID), their causes and how they affect specific individuals. Societies which are governed by cultural and religious norms have different perspectives with regards to ID, which can result in different experiences because of fear and/or negative attitudes towards a particular phenomenon frequently caused by a lack of information. In most societies, the key focus is on the child who is intellectually impaired in terms of his/her psychological wellbeing and little consideration is given to the wellbeing of the caregiver. This study aimed to explore the lived experiences of caregivers of intellectually impaired children in Mpumalanga Province, Bushbuckridge region taking into consideration the multiple factors which are involved when caring for children with intellectual disabilities. The study therefore aimed at discovering primary caregivers’ experiences, how they react to such experiences, as well as whether culture has an impact in the understanding of intellectual disabilities and attitudes towards individuals with intellectual disabilities. This study was qualitative utilising a phenomenological research design and interpretive phenomenological analysis to analyse the data collected. A purposive sample of nine primary caregivers whose children attended a special school in Bushbuckridge was interviewed. The primary caregivers were all females between 31 and 77 years of age. Only one primary caregiver had higher education and the other eight participants either did not have any basic education or did not complete matric. Semi-structured interviews which consisted of 22 questions about the demographic information of both caregiver and child, background, knowledge/awareness of intellectual disability as well as the psychological well-being of primary caregivers were conducted. Most caregivers indicated that they had experienced or are still experiencing psychological strain due to caring for a child with an intellectual disability. Despite this, some found the experiences fulfilling rather than a burden. The majority of primary caregivers had no knowledge of the appropriate professionals to consult who could help their children and themselves. The caregivers had very little knowledge about intellectual disabilities and their meaning in their different cultures. Most participants emphasised religion as some took their children to church for healing and some regarded their children as gifts from God. Participants reflected about the silence around ID in their communities. All participants mentioned their uncertainties with regard to their children’s education and their lives indicating that they would be open to help and guidance with this. Primary caregivers also expressed their financial strains. Overall, the study indicated that ID awareness in the rural areas must be conducted in terms of education and to support primary caregivers of children with ID.MT201

Parents' future visions for their autistic transition-age youth: hopes and expectations

Researchers have documented that young adults with autism spectrum disorder have poor outcomes in employment, post-secondary education, social participation, independent living, and community participation. There is a need to further explore contributing factors to such outcomes to better support successful transitions to adulthood. Parents play a critical role in transition planning, and parental expectations appear to impact young adult outcomes for autistic individuals. The aim of this study was to explore how parents express their future visions (i.e. hopes and expectations) for their autistic transition-age youth. Data were collected through focus groups and individual interviews with 18 parents. Parents' hopes and expectations focused on eight primary domains. In addition, parents often qualified or tempered their stated hope with expressions of fears, uncertainty, realistic expectations, and the perceived lack of guidance. We discuss our conceptualization of the relations among these themes and implications for service providers and research.Accepted manuscrip

EXPLORING BIOGRAPHIES: THE EDUCATIONAL JOURNEY TOWARDS BECOMING INCLUSIVE EDUCATORS OF CHILDREN WITH DISABILITIES

The current study explored the formative processes of twelve student teachers constructing role understandings in the context of their experiences and interactions with people with disabilities. In particular, it examined the participants’ changing notions of self-as-teacher and their unfolding perceptions of an inclusive educator’s role in teaching children with disabilities. The research aimed to investigate personal and professional forms of knowledge linked with the prior subjective life experiences of the student teachers and those arising from their interactions in situated learning experiences in community settings. The contextual framework of the study focused on the development of the student teachers’ unique understandings and awareness of people with disabilities through processes of biographical situated learning. The investigation examined participants’ voluntary out-ofcourse experiences with people with disabilities across three community settings for the ways in which these experiences facilitated the participants’ emerging role understandings. These settings included respite experiences in families’ homes of young children with disabilities receiving early intervention, an after-school recreational program for primary and secondary aged children and adolescents with disabilities, and an independent living centre providing post-school options and activities for adults with disabilities. ii Two groups participated in the current study, each consisted of six student teachers in the Bachelor of Education Course at the Bathurst campus of Charles Sturt University. Group One participants were in the second year compulsory inclusive education subject and Group Two participants were in the third year elective early intervention subject. The investigation examines the nature of reflexive and reflective processes of the student teachers from subjective, conflict realities in an attempt to link community experiences with real-life issues affecting inclusive educational practices. The voluntary community experiences engaged the research participants in multi-faceted interactions with people with disabilities, providing thought-provoking contexts for their reflections on observations, responses and reactions to situations, such as critical incidents. The participants engaged in reflexive and reflective processes in records made in learning journals and in semi-structured interviews conducted throughout the investigation. Results were analysed from a constructivist research paradigm to investigate their emerging role understandings. Prior to this study there had been few practical components in the compulsory undergraduate inclusive education subject which meant that previously student teachers gained theoretical knowledge without the opportunity to apply their learning. Many student teachers had expressed their feelings of anxiety and uneasiness about what they should do and say to a person with a disability. Thus, the community experiences were selected in order to give a specific context for student teachers’ learning and to provide participants with expanded opportunities to consider their professional identity, social awareness and acceptance of people with disabilities. iii An analysis of the data demonstrated the centrality of reflection within a situated teaching and learning framework. Understandings of prior experiences and motivation were shown to interact with the outcomes of the community experiences through an on-going process of reflection and reflexivity. This reconstructing process encouraged learners to reflect on past, present and projected future experiences and reframe actions from multiple perspectives as a way of exploring alternatives within broader contexts. The data reveal the participants’ engagement in the community experiences facilitated their awareness of wider socio-cultural educational issues, while focusing their attention on more appropriate inclusive teaching and learning strategies. The reflective inquiry process of identifying diverse issues led participants to consider other possible alternatives to current community practices for better ways to support their changing perspectives on ideal inclusive classroom practices. The dialogic nature of participants’ on-going deliberations contributed to the construction of their deeper understandings of an inclusive educator’s role. The findings of the study identified external environmental and internal personal factors as contributing biographical influences which shaped the student teachers’ emerging role understandings. The results emphasised the value of contextual influences in promoting desirable personal and professional qualities in student teachers. Importantly, situated learning enhanced participants’ unique interpretations of their prospective roles. As a result of analysing their insights from interactions in community contexts, the student teachers had increased their personal and professional understandings of individuals with disabilities and broadened their perceptions of their roles as inclusive educators. Thus, the study found that encouraging a biographical reflexive and reflective orientation in participants was conducive iv to facilitating changes in their understandings. Overall, the outcomes had benefits for student teachers and teacher educators in finding innovative ways for integrating biographical perspectives into situated teaching and learning approaches. The study showed that contextual influences facilitated deeper understanding of role identity and produced new ideas about the nature of reflexivity and reflection in guiding student teachers’ learning. (Note: Appendices not included in digital version of thesis

EXPLORING BIOGRAPHIES: THE EDUCATIONAL JOURNEY TOWARDS BECOMING INCLUSIVE EDUCATORS OF CHILDREN WITH DISABILITIES

The current study explored the formative processes of twelve student teachers constructing role understandings in the context of their experiences and interactions with people with disabilities. In particular, it examined the participants’ changing notions of self-as-teacher and their unfolding perceptions of an inclusive educator’s role in teaching children with disabilities. The research aimed to investigate personal and professional forms of knowledge linked with the prior subjective life experiences of the student teachers and those arising from their interactions in situated learning experiences in community settings. The contextual framework of the study focused on the development of the student teachers’ unique understandings and awareness of people with disabilities through processes of biographical situated learning. The investigation examined participants’ voluntary out-ofcourse experiences with people with disabilities across three community settings for the ways in which these experiences facilitated the participants’ emerging role understandings. These settings included respite experiences in families’ homes of young children with disabilities receiving early intervention, an after-school recreational program for primary and secondary aged children and adolescents with disabilities, and an independent living centre providing post-school options and activities for adults with disabilities. ii Two groups participated in the current study, each consisted of six student teachers in the Bachelor of Education Course at the Bathurst campus of Charles Sturt University. Group One participants were in the second year compulsory inclusive education subject and Group Two participants were in the third year elective early intervention subject. The investigation examines the nature of reflexive and reflective processes of the student teachers from subjective, conflict realities in an attempt to link community experiences with real-life issues affecting inclusive educational practices. The voluntary community experiences engaged the research participants in multi-faceted interactions with people with disabilities, providing thought-provoking contexts for their reflections on observations, responses and reactions to situations, such as critical incidents. The participants engaged in reflexive and reflective processes in records made in learning journals and in semi-structured interviews conducted throughout the investigation. Results were analysed from a constructivist research paradigm to investigate their emerging role understandings. Prior to this study there had been few practical components in the compulsory undergraduate inclusive education subject which meant that previously student teachers gained theoretical knowledge without the opportunity to apply their learning. Many student teachers had expressed their feelings of anxiety and uneasiness about what they should do and say to a person with a disability. Thus, the community experiences were selected in order to give a specific context for student teachers’ learning and to provide participants with expanded opportunities to consider their professional identity, social awareness and acceptance of people with disabilities. iii An analysis of the data demonstrated the centrality of reflection within a situated teaching and learning framework. Understandings of prior experiences and motivation were shown to interact with the outcomes of the community experiences through an on-going process of reflection and reflexivity. This reconstructing process encouraged learners to reflect on past, present and projected future experiences and reframe actions from multiple perspectives as a way of exploring alternatives within broader contexts. The data reveal the participants’ engagement in the community experiences facilitated their awareness of wider socio-cultural educational issues, while focusing their attention on more appropriate inclusive teaching and learning strategies. The reflective inquiry process of identifying diverse issues led participants to consider other possible alternatives to current community practices for better ways to support their changing perspectives on ideal inclusive classroom practices. The dialogic nature of participants’ on-going deliberations contributed to the construction of their deeper understandings of an inclusive educator’s role. The findings of the study identified external environmental and internal personal factors as contributing biographical influences which shaped the student teachers’ emerging role understandings. The results emphasised the value of contextual influences in promoting desirable personal and professional qualities in student teachers. Importantly, situated learning enhanced participants’ unique interpretations of their prospective roles. As a result of analysing their insights from interactions in community contexts, the student teachers had increased their personal and professional understandings of individuals with disabilities and broadened their perceptions of their roles as inclusive educators. Thus, the study found that encouraging a biographical reflexive and reflective orientation in participants was conducive iv to facilitating changes in their understandings. Overall, the outcomes had benefits for student teachers and teacher educators in finding innovative ways for integrating biographical perspectives into situated teaching and learning approaches. The study showed that contextual influences facilitated deeper understanding of role identity and produced new ideas about the nature of reflexivity and reflection in guiding student teachers’ learning. (Note: Appendices not included in digital version of thesis

NAVIGATING THE MICHELLE P. WAIVER: A NARRATIVE EXAMINATION OF THE IMPACT OF PARENT CAREGIVER-RELATED UNCERTAINTY AND DECISION MAKING FOR CHILDREN WITH DISABILITIES

The Michelle P. Waiver (MPW) is the primary means of health insurance for more than 10,000 people in the state of Kentucky. The waiver is especially popular among families with young children with disabilities because it is robust in its benefit offerings and also one of the few Medicaid resources that does not include parental income as a qualifying factor in eligibility. Through the waiver, children receive a medical card as well as additional coverage for medical expenses that fall beyond the scope of traditional health insurance. For these young children to gain access to the comprehensive offerings of the MPW, their parents must apply for the waiver, negotiate the terms of service, and make critical health care decisions on their behalf, or at least until they reach adulthood—although this responsibility often extends throughout the child’s life. The present study builds upon recent research on parental uncertainty in caregiving for children with complex care needs. By combining two ecological approaches to health communication research, Brashers’s (2001) uncertainty management theory (UMT) and Ball-Rokeach, Kim, and Matai’s (2001) communication infrastructure theory (CIT), my aim in this dissertation was to explain how meso-level (e.g., community organization) interactions influenced parental caregivers’ experiences of uncertainty. I collected data through narrative interviews with 31 parents of children who are currently receiving services through the MPW and analyzed them using narrative thematic analysis. The analysis focused on the community-level communication that contributes to parent caregivers’ ability to successfully access and negotiate care within the MPW system. Findings show that parents experience unique personal, social, and medical uncertainties related to the MPW. In addition, the findings demonstrate that MPW-related uncertainty and decision making are managed with a variety of strategies aimed to decrease, increase, or maintain desired levels of uncertainty. Finally, findings showcase how one’s connectedness to community storytelling at the meso level, particularly within online communities and disability network communities supports their adaptive management of MPW-related uncertainty. This project contributes to the health communication literature theoretically by (a) expanding the conceptualization of the uncertainty in illness framework to include the means of health care (i.e., Medicaid) as a consequential element of an individual’s illness experience, (b) identifying two additional strategies of uncertainty management (i.e. advocacy and vigilance), and by (c) extending existing notions of residency, connectedness, and belongingness within the CIT framework to include membership in online and disability-specific networks. Practically, this project offers important insights that can guide future research exploring the role of meso-level communication in parent caregivers’ management of waiver-based care, such as in identifying the need for a systematic communication process that introduces potentially eligible families to the MPW

“You’re 18 now, goodbye”: The experiences of young people with Attention Deficit Hyperactivity Disorder of the transition from child to adult services

This is the author accepted manuscript. The final version is available from Taylor & Francis (Routledge) via the DOI in this record.The term ‘transition’ is used to refer to the process of moving from child to adult services. Among child and adolescent mental health services attenders, young people with Attention Deficit Hyperactivity Disorder (ADHD) are less likely to transition successfully, but there is a gap in understanding their views and why they might disengage from services. The aim of this study was to explore the experiences of transition of young people with ADHD in Southwest England using semi-structured interviews and thematic analysis. Seven young people aged 17-19 years participated. Four key themes were identified: professionals’ roles and relationships with young people; the role of ADHD medication, uncertainties around transition and medication management, and identified needs and increasing independence. Although this study presents the experiences of a small number of people, their stories suggest that best practice around transition is not always being followed. There is consequently a need to better understand the facilitators and barriers to best practice implementation.This research was funded as part of a Doctoral Research Fellowship from the National Institute for Health Research held by Tamsin Newlove-Delgado(Reference: DRF-2012-05- 221). Tamsin Newlove-Delgado is currently funded by an NIHR Academic Clinical Lectureship. Ken Stein is funded by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) for the South West Peninsula at Royal Devon and Exeter NHS Foundation Trust. This report is independent research and the views expressed in this publication are those of the authors and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health

In Their Own Words: Using Siblings’ Meanings about Daily Family Interaction to Understand the Influence of a Child with a Developmental Disability on the Sibling Experience

This study examined daily experiences of stress and coping among adolescent siblings of children with developmental disabilities. Early studies of this population have assumed that living with a disabled sibling is inherently stressful due to changes in the availability and allocation of familial resources. While recent work suggests that only a minority of nondisabled youth experience considerable stress related to family interactions involving a disabled sibling, few studies offer an understanding of how nondisabled siblings make meaning of their experiences and their attempts to cope with them. As such, we have a poor understanding of why some nondisabled siblings struggle while others do not. To address this gap in the literature, I drew on models of stress and coping to conduct a qualitative exploration of the cognitive appraisals used by nondisabled siblings during stressful family interactions. I conducted in-depth individual interviews with 11 nondisabled siblings (aged 10 to 17 years old) to elicit their descriptions of daily family interactions. The interviews were composed of audio-recorded dinner conversations and emotion maps as well as open-ended questions to elicit candid and detailed accounts of family life. Analyses of participants’ appraisal processes addressed the following questions: which aspects of daily family interactions they experienced as stressful and why they were appraised as stressful, how the participants attempted to manage these stressful interactions and why they chose particular coping behaviors and resources, and how their coordination of these appraisals were associated with their subsequent distress. The findings present three important clinical and research implications, including the importance of considering nondisabled siblings’ appraisals of stressful family interactions in clinical practice and research, the need to expand nondisabled siblings’ coping behaviors and resources for managing daily family-related stress, and the role of parents in nondisabled siblings’ experiences of stress