Weaving yarns : the lived experience of Indigenous Australians with adult-onset disability in Brisbane

Indigenous Australians have lower levels of health than mainstream Australians and (as far as statistics are able to indicate) higher levels of disability, yet there is little information on Indigenous social and cultural constructions of disability or the Indigenous experience of disability. This research seeks to address these gaps by using an ethnographic approach, couched within a critical medical anthropology (CMA) framework and using the “three bodies” approach, to study the lived experience of urban Indigenous people with an adult-onset disability. The research approach takes account of the debate about the legitimacy of research into Indigenous Australians, Foucault‟s governmentality, and the arguments for different models of disability. The possibility of a cultural model of disability is raised. After a series of initial interviews with contacts who were primarily service providers, more detailed ethnographic research was conducted with three Indigenous women in their homes and with four groups of Indigenous women and men at an Indigenous respite centre. The research involved multiple visits over a period extending more than two years, and the establishment of relationships with all participants. An iterative inductive approach utilising constant comparison (i.e. a form of grounded theory) was adopted, enabling the generation and testing of working hypotheses. The findings point to the lack of an Indigenous construct of disability, related to the holistic construction of health among Indigenous Australians. Shame emerges as a factor which affects the way that Indigenous Australians respond to disability, and which operates in apparent contradiction to expectations of community support. Aspects of shame relate to governmentality, suggesting that self-disciplinary mechanisms have been taken up and support the more obvious exertion of government power. A key finding is the strength of Indigenous identity above and beyond other forms of identification, e.g. as a person with a disability, expressed in forms of resistance by individuals and service providers to the categories and procedures of the mainstream. The implications of a holistic construction of health are discussed in relation to the use of CMA, the interpretation of the “three bodies”, governmentality and resistance. The explanatory value of the concept of sympatricity is discussed, as is the potential value of a cultural model of disability which takes into account the cultural politics of a defiant Indigenous identity.

The lived experience of families living with spinal cord disability in Northeast Thailand

The experience of disability in the global South remains relatively underreported in spite of the greater focus on disability as both an impediment to development and frequently as a result of development. This article reports a qualitative study using ethnographic techniques undertaken in the province of Khon Kaen in Northeast Thailand. The primary participants were men who had experienced a severe spinal cord injury at a time when they were breadwinners, a role which is significant in the context of a modernising state that is an active participant in a global economy. The experiences, constructions and beliefs of these men, their family carers, and other informants illustrate the complex ways in which social and cultural factors interact with the opportunities, challenges and constraints of transition to modernity. The findings, interpreted according to the 'three bodies' approach, illustrate the intersection of colonising effects, governmentality and resistance, and embodied experience in a cultural context.

The lived experience of being a sole mother in Taiwan

Aim: To explore the lived experience of being a sole mother in Taiwan Background: The number of sole mothers in Taiwan has increased by 55 % in the last decade due to changes in the social and economic status of women (e.g. earlier divorce, the development of national policies for the protection of women, the rise of feminism, and changing work practices which have seen an increase in the number of women in the workforce) (Taiwan Department of Statistics, 2010). Issues confronting sole mothers as part of daily living involve inability to cope with daily life stressors, little social support, experiencing feelings of helplessness and hopelessness, and lack of self-confidence to assume responsibility for the physical and mental health needs of themselves and their children (Cairney, 2007; Loxton, Mooney & Young, 2006; Samuels-Dennis, 2006; Waldron et al., 1996). Although there have been a number of studies conducted concerning what it means to be a sole mother, few Taiwanese studies have been undertaken. In light of the absence of research on this topic from a Taiwanese perspective, this study was undertaken. Design:A descriptive phenomenological approach was used for this study. Methods: In-depth audio-taped interviews were conducted with 15 sole Taiwanese mothers. The audiotapes were later transcribed, translated into English, and then back translated into Chinese to ensure accuracy of participants‘ information. Colaizzi‘s phenomenological approach to analysis with one additional step (eight steps in all) informed the analytical process. Findings: The process of analysis identified six central themes: 1. Enduring the burdensome, 2. Survival means living day-by-day, 3. Living in the shadows of insomnia, depression and suicidal thoughts, 4. Living with rejection and social isolation, 5. Living with uncertainty, and 6. Transcending difficult times through being resilient. Conclusion: For the participants of this study, the lived world of Taiwanese sole mothers was replete with daily difficulties marked by isolation, loneliness, social disapproval and rejection. Feelings of sadness and dejection were their daily companions. However, amid their myriad hardships, the participants found strength and solace in their children and close friends. Rather than succumb to the pressures of being a sole mother, the participants forged new paths spurred on by their own hopes and dreams for a better future. The findings of this study have the potential to make significant contributions to extant knowledge concerning the lived experiences of sole mothers in Taiwan.

The lived experience of PTSD for children of Australian Vietnam veterans in Australia

There is a growing area of scholarship that attests to the importance of understanding the impact of Post Traumatic Stress Disorder (PTSD) on the military family (Cozza, Chun, & Polo, 2005; Peach, 2005; Riggs, 2009; Siebler, 2003). Recent research highlights the critical role that the family plays in mitigating the effects of this condition for its members (Chase-Lansdale, Wakschlag, & Brooks-Gunn, 1995; Fiese, Foley, & Spagnola, 2006; Hetherington & Blechman, 1996; Pinkerton & Dolan, 2007; Seedat, Niehaus, & Stein, 2001; Serbin & Karp, 2003; Walsh, 2003), society (Jenson & Fraser, 2006; Seedat, Kaminer, Lockhat, & Stein, 2000; Wood & Geismar, 1989) and the next generation (Davidson & Mellor, 2001; Ender, 2006; Weber, 2005; Westerink & Giarratano, 1999). However, little is understood about the way people who grew up in Australlian military families affected by PTSD describe their experiences and what the implications are for their participation in family life. This study addressed the following research questions: (1) ‘How does a child of a Vietnam veteran understand and describe the experience of PTSD in the family?’ and (2) ‘What are the implications of this understanding on their current participation in family life?’ These questions were addressed through a qualitative analysis of focus-group data collected from adults with a Vietnam veteran parent with PTSD. The key rationale for a qualitative approach was to develop an understanding of these questions in a way which was as faithful as possible to the way they talked about their past and present family experiences. A number of experiential themes common to participants were identified through the data analysis. Participants’ experiences linked together to form a central theme of control, which revealed the overarching narrative of ‘It’s all about control and the fear of losing it’, that responds to the first research queston. The second research question led to a deeper analysis of the ‘control experiences’ to identify the ways in which participants responded to and managed these problematic aspects of family life, and the implications for their current sense of participation in family life. These responses can be understood through the overarching narrative of: ‘Soldier on despite the differences’ which assists them to optimise the impact of control and develop strategies required to maintain a semblance of personal normality and a normal family life. This intensive research has led to the development of theoretical propositions about this group’s experiences and responses that can be tested further in subsequent research to assist families and their members who may be experiencing the intergenerational impacts of psychological trauma acquired from military service.

The lived experience of post-traumatic stress disorder as described by motor vehicle accident victims in Jordan

Aim: To explore the lived experience of post-traumatic stress disorder (PTSD) as described by individuals who have been involved in a motor vehicle accident (MVA) in Jordan. Background: Motor vehicle accident (MVA) survivors who develop post-traumatic stress disorder (PTSD) have become an important health issue. The World Health Organisation (WHO) states that trauma resulting from MVAs is a phenomenon of increasing concern, with death from injuries projected to rise from 5.1 million in 1990 to 8.4 million in 2020 particularly in developing countries such as Jordan (WHO, 2002). The impact of trauma from MVAs inevitably compromises the victim’s quality of life (WHO, 2002; Blanchard & Hickling, 2007) resulting in psychological and emotional distress, occupational disability, family disintegration, and socio-economic difficulty (Jordan Ministry of Health, 2005). The development of PTSD as a result of an MVA is not limited to the individual, but also extends to the family, friends, and the health care team involved in the person's care and rehabilitation. Design: A descriptive phenomenological approach was used for this study. Method: This study was conducted in an orthopaedic unit in Amera Basma Hospital in Irbid Jordan. Fifteen (15) participants were voluntary recruited through the process of purposeful sampling. Data was collected by face-to-face in depth-interviews. Interviews were digitally recorded and transcribed verbatim. The process of analysis was undertaken using Colaizzi’s (1978) eight step approach with the addition of two extra steps. Findings: The process of analysis identified seven themes explicated from the participants’ transcripts of interview. The seven themes were: 1. Feeling frustrated at a diminishing health status 2. Struggling to maintain a sense of independence 3. Harbouring feelings of not being able to recover 4. Feeling discriminated against and marginalised by society 5. Feeling ignored and neglected by health care professionals 6. Feeling abandoned by family, and 7. Moving toward acceptance through having faith in Allah. Conclusion: The findings of this study have the potential to make a significant contribution to extant knowledge on the topic which can inform future nursing practice, education, policy development, and research initiatives in Jordan and internationally.

Gifted students with a reading disability : the impact of lived experience

Gifted students who have a reading disability have learning characteristics that set them apart from their peers. The ability to read impacts upon all areas of the formal curriculum in which print-based texts are common. Therefore, the full intellectual development of gifted students with a reading disability can be repressed because their access to learning opportunities is reduced. When the different learning needs caused by concomitant giftedness and reading disability are not met, it can have serious implications for both academic achievement and the social-emotional wellbeing of these students. In order to develop a deeper understanding of this vulnerable group of students, this study investigated the learning characteristics of gifted students with a reading disability. Furthermore, it investigated how the learning characteristics of these students impact upon their lived experiences. Since achievement and motivation have been shown to be closely linked to self-efficacy, self-efficacy theory underpinned the conceptual framework of the study. The study used a descriptive case study approach to document the lived experiences of gifted students with a reading disability. Nine participants aged between 11 and 18, who were formally identified as gifted with a reading disability, took part in the study. Data sources in the case study database included: cognitive assessments, such as WISC assessments, Stanford Binet 5, or the Raven's Standard Progressive Matrices; the WIAT II reading assessment; the Reader Self-Perception Scale; document reviews; parent and teacher checklists designed to gain information about the students' learning characteristics; and semi-structured interviews with students. The study showed that gifted students with a reading disability display a complex profile of learning strengths and weaknesses. As a result, they face a daily struggle of trying to reconcile the confusion of being able to complete some tasks to a high level, while struggling to read. The study sheds light on the myriad of issues faced by the students at school. It revealed that when the particular learning characteristics and needs of gifted students with a reading disability are recognised and met, these students can experience academic success, and avoid the serious social-emotional complications cited in previous studies. Indeed, rather than suffering from depression, disengagement from learning, and demotivation, these students were described as resilient, independent, determined, goal oriented and motivated to learn and persevere. Notably, the students in the study had developed effective coping strategies for dealing with the daily challenges they faced. These strategies are outlined in the thesis together with the advice students offered for helping other gifted students with a reading disability to succeed. Their advice is significant for all teachers who wish to nurture the potential of those students who face the challenge of being gifted with a reading disability, and for the parents of these students. This research advances knowledge pertaining to the theory of self-efficacy, and self-efficacy in reading specifically, by showing that although gifted students with a reading disability have low self-efficacy, the level is not the same for all aspects of reading. Furthermore, despite low self-efficacy in reading these students remained motivated. The study also enhances existing knowledge in the areas of gifted education and special education because it documents the lived experience of gifted students with a specific learning disability in reading from the students' perspectives. Based on a synthesis of the literature and research findings, an Inclusive Pathway Model is proposed that describes a framework to support gifted students with a reading disability so that they might achieve, and remain socially and emotionally well-adjusted. The study highlights the importance of clear identification protocols (such as the use of a range of assessment sources, discussions with students and parents, and an awareness of the characteristics of gifted students with a reading disability) and support mechanisms for assisting students (for example, differentiated reading instruction and the use of assistive technology).

Negotiating disability and colonisation : the lived experience of Indigenous Australians with a disability

Disability among Indigenous Australians lies at a nexus between the ongoing impact of European settlement from 1788 and the social effects of living with a disability. Colonisation, with its political, social, economic and cultural concomitants, continues to impact on Indigenous experience, extending to the institutions and services concerned with disability. There is little attention paid to Indigenous Australian disability in general, and the need to decolonise disability has recently been emphasised. Ethnographic research in Brisbane, Australia among Indigenous people with a disability (mostly related to diabetes) confirms the ongoing impact of colonisation. While this experience pervades all aspects of their lives, it also moderates their experience of living with a disability in positive ways. However, while individuals can negotiate their personal experience of disability, the decolonisation of disability services presents challenges that need to be addressed.

Lived experience and devised theatre practice : a study of Australian and Norwegian theatre students' devised theatrical practice

This study explores the incorporation of young people's lived experience upon the creative dynamics in the development of devised performance practice. By employing Vygotsky's creativity theory to devising processes the role of lived experience is analyzed through three case studies located in two theatre education colleges in Norway and Australia. The study demonstrates how young peoples' life experience is a primary resource that is developed and reasoned upon in the creative performance practice. A key finding of the study is the identification of two distinct type of performance outcome in devised theatre practice, described as "livsbasert/life-based" and "egenskapt/self-made" that will enable devised theatre to have a more nuanced understanding of both process and product in the Nordic context.

The Lived Experience of Families Living with Spinal Cord Disability in Northeast Thailand

The experience of disability in the global South remains relatively underreported in spite of the greater focus on disability as both an impediment to development and frequently as a result of development. This article reports a qualitative study using ethnographic techniques undertaken in the province of Khon Kaen in Northeast Thailand. The primary participants were men who had experienced a severe spinal cord injury at a time when they were breadwinners, a role which is significant in the context of a modernising state that is an active participant in a global economy. The experiences, constructions and beliefs of these men, their family carers, and other informants illustrate the complex ways in which social and cultural factors interact with the opportunities, challenges and constraints of the transition modernity. The findings, interpreted according to the ‘three bodies’ approach, illustrate the intersection of colonising effects, governmentality and resistance, and embodied experience in a cultural context.

The lived experience of diagnosis delivery in motor neurone disease: A sociological-phenomenological study

Relatively few previous studies of individuals receiving a diagnosis of Motor Neurone Disease within the UK health care system have employed qualitative approaches to examine the diagnostic journey from a patient perspective. A qualitative sociological study was undertaken, involving interviews with 42 participants diagnosed with MND, to provide insight into their experiences of undergoing testing and receiving a diagnosis. Adopting a sociological-phenomenological perspective, this article examines key themes that emerged from participant accounts surrounding the lived experience of the diagnostic journey. The key themes that emerged were: The diagnostic quest; living with uncertainty; hearing bad news; communication difficulties; and a reified body of medical interest. In general, doctor-patient communication both at pre and post diagnosis was experienced as highly stressful, distressing and profoundly upsetting. Participants reported such distress as being due to the mode of delivery and communication strategies used by health professionals. We therefore suggest that professional training needs to emphasize the importance to health professionals of fostering greater levels of tact, sensitivity and empathy towards patients diagnosed with devastating, life-limiting illnesses such as MND.

The lived experience of Irish diocesan priests. A qualitative study of clerical identity, obedience and celibacy.

The main aim of this thesis is to document and explore the lived experience of Irish diocesan priests and former priests, in order to explore the reality of diocesan priesthood in contemporary Ireland, and to investigate how, if at all, diocesan priesthood has changed in Ireland during the past fifty years. It sought to do this by interrogating the stories of thirty-three diocesan priests and former priests, and by placing their individual stories within the broader context of Irish society and the Catholic Church, during the fifty-year period, 1962–2012. The research focused on three core areas of priesthood – identity, obedience, and celibacy – and it addressed the following questions. First, how do Irish diocesan priests understand their priesthood and how has this understanding changed over time, if at all? I will argue that three paradigms of priesthood co-exist in the contemporary Irish Church, and that each of these models corresponds with a distinct period in contemporary Irish Church history. I will also demonstrate the existence of underlying similarities in the cultural practice of priesthood that transcend the different generations of priests. Second, how do Irish diocesan priests negotiate their priesthood within a large and complex institution? My study suggests that Irish diocesan priests are typically loyal and obedient. However, they are not necessarily subservient. Third, how do Irish diocesan priests understand and experience celibacy in their day-to-day lives? My study demonstrates that celibacy is typically understood and experienced along a continuum, ranging from total acceptance to total rejection, with most priests somewhere in between. Fourth, I will argue that while priests are experiencing many difficulties in their lives, there is insufficient evidence from the present study to indicate they are experiencing a crisis.

The lived experience of patients receiving radiotherapy for head and neck cancer: A literature review

It is estimated that 60% of patients diagnosed with head and neck cancer will receive radiotherapy at some stage in their disease trajectory. The aim of this literature review was to find and analyse papers pertaining to the lived experiences of patients with head and neck cancer receiving radiotherapy. The review identified a limited number of high-quality research papers focusing on this topic, with only 10 papers fitting the inclusion/exclusion criteria. The majority of the investigative studies were not generalisable owing to small sample sizes and many of them being conducted in only one centre. However, the findings do highlight and contribute to the understanding of the lived experiences of this patient group and provide some insight into the unique physical, social, and psychological difficulties they encounter as a result of their treatment. There appears to be a need for further high-level research into these patients, particularly focusing on the provision of support and information prior to, during, and following radiotherapy. Further attention needs to be paid to preparing patients for the slow recovery following radiotherapy. Interventional studies are also required to develop clinical guidelines and protocols that can assist health professionals in meeting the holistic needs of this patient group.

Up close and personal: A qualitative study exploring the lived experience of older carers. Mental Health and Learning Disabilities Research. 8 (1). Pp.15-29.

This study explored the experiences of informal carers who were aged 65 years and over. It has been estimated that 15 per cent of those aged 65 or over provide some form of informal care in England. Despite a growing literature on the involvement of older people in research, there is a paucity of literature on the involvement of older carers. In this study, older carers were identified via a General Practice (GP) register in one urban medical practice. Data was collected through a series of focus groups, which were transcribed and analysed using
thematic analysis. Every carer aged 55 or over and registered with the medical practice was invited to take part in the study. Four female carers and one male carer took part in the study (age range 65-83). Themes that emerged during data analysis included, 1) managing things in an emergency, 2) feeling valued because they took part in the research and 3) the day-to-day reality of living with social exclusion. GP registers provide a valuable tool for identifying older
carers who may otherwise be difficult to engage in research. However, persuading GPs to engage with qualitative research may be a challenge.

Exploring the experiences of male spousal caregivers for their wives with alzheimer disease in their homes : the lived experience and the men's perception of support groups /

This research is qualitative in nature and has explored, by means of interviews, the '^^ experiences of 10 men in their roles in caring for their spouses with Alzheimer Disease (see glossary) in their homes. Additional data were collected by attending 3 formal support group meetings and one informal meeting of a group of men who brought their wives to a support group meeting for their wives with AD. The data retrieved supported the assumption that education about the disease, utilization of formal community support services, and attendance at caregiver support groups or programs can assist healthy male caregivers in caring for their wives with AD in their homes.