Search results for: sibling’s lived experience of disability
Commenced in January 2007
Frequency: Monthly
Edition: International
Paper Count: 5467

Search results for: sibling’s lived experience of disability

5437 The Meaning Structures of Political Participation of Young Women: Preliminary Findings in a Practical Phenomenology Study

Authors: Amanda Aliende da Matta, Maria del Pilar Fogueiras Bertomeu, Valeria de Ormaechea Otalora, Maria Paz Sandin Esteban, Miriam Comet Donoso

Abstract:

This communication presents the preliminary emerging themes in a research on political participation of young women. The study follows a qualitative methodology; in particular, the applied hermeneutic phenomenological method, and the general objective of the research is to give an account of the experience of political participation as young women. The study participants are women aged 18 to 35 who have experience in political participation. The techniques of data collection are the descriptive story and the phenomenological interview. With respect to the first methodological steps, these have been: 1) collect and select stories of lived experience in political participation, 2) select descriptions of lived experience (DLEs) in political participation of the chosen stories, 3) to prepare phenomenological interviews from the selected DLEs, 4) to conduct phenomenological thematic analysis (PTA) of the DLEs. We have so far initiated the PTA on 5 vignettes. Hermeneutic phenomenology as a research approach is based on phenomenological philosophy and applied hermeneutics. Phenomenology is a descriptive philosophy of pure experience and essences, through which we seek to capture an experience at its origins without categorizing, interpreting or theorizing it. Hermeneutics, on the other hand, may be defined as a philosophical current that can be applied to data analysis. Max Van Manen wrote that hermeneutic phenomenology is a method of abstemious reflection on the basic structures of the lived experience of human existence. In hermeneutic phenomenology we focus, then, on the way we experience “things” in the first person, seeking to capture the world exactly as we experience it, not as we categorize or conceptualize it. In this study, the empirical methods used were: Lived experience description (written) and conversational interview. For these short stories, participants were asked: “What was your lived experience of participation in politics as a young woman? Can you tell me any stories or anecdotes that you think exemplify or typify your experience?”. The questions were accompanied by a list of guidelines for writing descriptive vignettes. And the analytical method was PTA. Among the provisional results, we found preliminary emerging themes, which could in the advance of the investigation result in meaning structures of political participation of young women. They are the following: - Complicity may be inherent/essential in political participation as a young woman; - Feelings may be essential/inherent in political participation as a young woman; - Hope may be essential in authentic political participation as a young woman; - Frustration may be essential in authentic political participation as a young woman; - Satisfaction may be essential in authentic political participation as a young woman; - There may be tension between individual/collective inherent/essential in political participation as a young woman; - Political participation as a young woman may include moments of public demonstration.

Keywords: applied hermeneutic phenomenology, hermeneutics, phenomenology, political participation

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5436 Attitudes of Faculty Members Towards Inclusion of Students with Disability at Prince Sattam Bin Abdulaziz University

Authors: Khalid Alasim

Abstract:

This study investigates the attitudes of faculty members at Prince Sattam bin Abdulaziz University toward integrating students with disabilities. Additionally, this research examines the possible factors that might affect faculty members’ attitudes about the inclusion of students with disability; the factors include occupation, gender, college, the country in which the certificate was obtained, years of experience, previous experience in teaching students with disabilities, the presence of a family member with a disability, attending a program on teaching students with disabilities. The researcher used a survey to collect data and the study sample consisted of 102 faculty members at the university. The findings indicated an increase in the attitudes of faculty members at Prince Sattam bin Abdulaziz University towards the inclusion of students with disabilities in the university, while there is no effect for all study independents variables on the attitudes of faculty members, and there is no interaction between the variables as well. The study concluded with the importance of training and preparing faculty members to teach and deal with students with disabilities at the university level.

Keywords: attitutes, inclusion, disability, faculty members

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5435 A Qualitative Study of the Effect of Sibling and Parental Relationships on Coping Mechanisms in Families of Children with Autism Spectrum Disorder

Authors: Smriti Gour, Neelam Pandey

Abstract:

The objective of this study was to describe and analyse the mutual relationship between the coping mechanisms used by the families of a child with Autism Spectrum Disorder (ASD) and family dynamics and the effect sibling interactions have on the dynamics and coping mechanisms in an urban setup. In-depth interviews were conducted for 25 families, with 4 members each in the Delhi NCR area in India. The families who were interviewed had a younger child who had received a diagnosis of ASD between the ages of 5-12. The in-depth questionnaires contained open-ended questions and the interviews were conducted separately for the mother, father and the typically developing sibling. The key findings of the study suggested that lack of communication was a common factor in most families (n=19) leading to other difficulties like stress and relationship dysfunction. It also fostered a fallacious perception of the relationship dynamics in the family in most of the interviewed families and changed depending on the family member being interviewed. In families where the typically developing elder sibling had a good relationship with the autistic child, the family dynamics were found to be more stable, and the overall family well-being was better maintained. The coping mechanisms employed by the families were also more positive and tended to work better if the typically developing sibling maintained a positive and interactive relationship with the parents and the autistic child. The type of coping mechanisms had a major impact on the relationship between the parents and in dictating the dynamics of the family of the child with ASD. Spirituality, professional help, family support and household help emerged to be the most effective coping mechanisms for the families, with spirituality emerging to be the most positive and effective coping mechanism in the families interviewed.

Keywords: autism spectrum disorder, coping mechanism, family dynamics, parental relationships, siblings

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5434 Canadian High School Students' Attitudes and Perspectives Towards People with Disabilities, Autism and Attention Deficit Hyperactivity Disorder (ADHD)

Authors: Khodi Morgan, Kasey Crowe, Amanda Morgan

Abstract:

Canadian High School Students' Attitudes & Objective: To survey Canadian high school students regarding their attitudes and perspectives towards people with disabilities and explore how age, gender, and personal experience with a disability may impact these views. Methods: A survey was developed using the standardized Attitude Toward Persons With Disability Scale as its base, with the addition of questions specifically about Autism and Attention Deficit Hyperactivity Disorder (ADHD). The survey also gathered information about the participant’s age and gender and whether or not they, or a close family member, had any disabilities. Participants were recruited at a public Canadian high school by fellow student researchers. Results: A total of 219 (N=219) students ranging from 13 - 19 years old participated in the study (m= 15.9 years of age). Gender was equally split, with 44% male, 42% female and 14% undeclared. Experience with a disability was common amongst participants, with 25% self-identifying as having a personal disability and 48% claiming to have a close family member with a disability. Exploratory trends indicated that females, people with self-identified disabilities, and people with close family members with disabilities trended towards having more positive attitudes toward persons with disabilities.

Keywords: disability, autism, ADHD, high school, adolescence, community research, acceptance

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5433 Recessionary Tales: An Investigation into How Children with Intellectual Disability, and Their Families Experience the Current Economic Downturn

Authors: S. Flynn

Abstract:

This paper offers a focused commentary on the impact of the current economic downturn on children with ID (intellectual disability), and their families, in the Republic of Ireland. It will examine the practical challenges, serious concerns, and trends in the field of disability with specific regard to the impact of the economic downturn in the Irish context. This includes the impact of cutbacks to services and supports, and the erosion of possibilities for life progression for children with ID as evident within the existing body of research. This focused commentary on core and seminal literature, policy and research will then be used to provide a discussion on what are the core points of learning for policy makers, researchers, practitioners and society as whole.

Keywords: children, disability, economic, recession

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5432 A Qualitative Study to Explore the Social Perception and Stigma around Disability, and Its Impact on the Caring Experiences of Mothers of Children with Physical Disability in Bangladesh

Authors: Farjina Malek, Julie King, Niki Edwards

Abstract:

Across the globe more than a billion people live with a disability and a further billion people, mostly carers, are indirectly impacted. While prevalence data is problematic, it is estimated that more than 15% of the population in Bangladesh live with a disability. Disability service infrastructure in Bangladesh is under-developed; and consequently, the onus of care falls on family, especially on mothers. Within the caring role, mothers encounter many challenging experiences which are not only due to the lack of support delivered through the Bangladeshi health care system but also related to the existence of stigma and perception around disability in the Bangladeshi society. Within this perception, the causes of disability are mostly associated with 'God’s will'; 'possession of ghosts on the disabled person'; and 'karma or the result of past sins of the family members especially the mothers'. These beliefs are likely to have a significant impact on the well-being of mothers and their caring experience of children with disability. This is an ongoing qualitative study which is conducting in-depth interviews with 30 mothers from five districts (Dhaka, Mymensingh, Manikganj, Tangail, and Gazipur) of Bangladesh with the aim to explore the impact of social perception and stigma around physical disability on the caring role of the mothers of children with physical disability. The major findings of this study show that the social perception around disability and the social expectation from a mother regarding her caring role have a huge impact on the well-being of mothers. Mothers are mostly expected to take their child on their lap to prove that they are ‘good mother’. These practices of lifting their children with physical disability and keeping them on the lap for a long time often cause chronic back pain of the mothers. Existing social beliefs consider disability as a ‘curse’ and punishment for the ‘sins’ of the family members, most often by the mother. Mothers are blamed if they give birth to ‘abnormal’ children. This social construction creates stigma, and thus, the caring responsibility of mothers become more challenging. It also encourages the family and mothers to hide their children from the society and to avoid seeking accessible disability services. The mothers also compromise their careers and social interaction as they have to stay with their children at home, and that has a significant impact on personal wellbeing, income, and empowerment of the mothers. The research is informed by intersectional theory and employed an interpretive phenomenological methodology to explore mothers’ experience of caring their children with physical disability, and the contribution and impact of key relationships within the family and the intersection with community and services.

Keywords: mother, family carer, physical disability, children, social stigma, key relationship

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5431 Lived Experience of Breast Cancer for Arab Muslim Women

Authors: Nesreen M. Alqaissi

Abstract:

Little is known about the lived experiences of breast cancer among Arab Muslim women. The researcher used a qualitative interpretive phenomenological research design to explore the lived experiences of breast cancer as described by Jordanian Muslim women. A purposive sample of 20 women with breast cancer was recruited. Data were collected utilizing individual semi-structured interviews, and analyzed using Heideggerian Hermeneutical methodology. Results: Five related themes and one constitutive pattern: (a) breast cancer means death; (b) matriarchal family members as important source of support; (c) spirituality as a way to live and survive breast cancer; (d) concealing cancer experiences to protect self and families; (e) physicians as protectors and treatment decision makers; (f) the constitutive pattern: culture influencing Jordanian women experiences with breast cancer. In conclusion, researchers and healthcare providers should consider the influence of culture, spirituality, and families, when caring for women with breast cancer from Jordan.

Keywords: breast cancer, Arab Muslim, Jordan, lived experiences, spirituality, culture

Procedia PDF Downloads 465
5430 A Comparative Study of Language Used in English Newspaper Dailies of Mumbai in Addressing Disability Related Issues

Authors: Amrin Moger, Martin Mathew, Sagar Bhalerao

Abstract:

Mass media may be categorized into print and digital, former being the traditional form of reaching the masses to inform and educate on various issues. The Indian print media is more than two centuries old. Its strengths have largely been shaped by its historical experience and, in particular, by its association with the freedom struggle as well as movements for social emancipation, reform, and amelioration. Therefore, it is highly regarded in the Indian society. Persons with disability are part of Indian Society. Persons with Disability have always been looked down upon and not considered as part of the society. People with disabilities were commonly feared, pitied, and neglected. Much of the literature on disability in India has pointed to the importance of the concept of karma in attitudes to disability, with disability perceived either as punishment for misdeeds in the past lives of the PWD, or the wrongdoings of their parents. Some Indian authors consider the passage of the PWD Act as a landmark step in the history of rehabilitation services in India have put it, ‘At a profoundly serious and spiritual level, disability represents divine justice’. The newspaper has to play a role where it changes this attitude of the people. A short comparative content analysis of two English newspapers of Mumbai edition was selected, to analyze the language that is used for reporting disability issues. Software Package for Social Science (SPSS) was used to gather and analyze data.

Keywords: content analysis, disability, newspaper dailies, language

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5429 The Lived Experience of People with a Mental Illness of Their Engagement in Therapeutic Recreation

Authors: Caroline Picton, Lorna Moxham, Christopher Patterson, Dana Perlman, Ellie Taylor, Renee Brighton

Abstract:

The purpose of this study was to extrapolate the meaning for people living with a mental illness of their participation in a therapeutic recreation experience. The study’s participants engaged in a five-day adventure camp, known as Recovery Camp, alongside undergraduate health care students. An interpretive phenomenological approach was used as an exploratory method to interview 25 participants (n=25). Van Kaam’s structured analytical framework guided the analysis of the transcribed narratives. The findings provide insight into using therapeutic recreation to enhance personal mental health recovery. Recovery Camp was viewed by participants as having a transformational effect on forming positive social connectedness and improving their self-identity. Participants perceived the Recovery Camp experience as one that gave them a sense of purpose and increased their motivation to undertake further activities. The insights gained of the benefits of therapeutic recreation for people living with a mental illness can be used to promote purposeful community engagement.

Keywords: interpretive phenomenology, lived experience, mental illness, personal mental health recovery

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5428 The Story of a Spoiled Identity: Blogging on Disability and Feminity

Authors: Anna Ślebioda

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The paper discusses intersections between disability and femininity. Their imbrication may impede negotiation of identity. The analysis of a blog of a women with disability aims to prove this hypothesis. It involves 724 entries written in the span of six years. The conceptual framework for the considerations constitute the concepts of stigma and spoiled identity, and overlapping elements of femininity and disability. The empirical part comprises content analysis. It allows to locate the narrative on femininity and disability within the dimensions of imbricated categories described in the theoretical part. The results demonstrate aspects to consider in further research on identity in women with disabilities.

Keywords: disability, femininity, spoiled identity, stigma

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5427 The Influence of Housing Choice Vouchers on the Private Rental Market

Authors: Randy D. Colon

Abstract:

Through a freedom of information request, data pertaining to Housing Choice Voucher (HCV) households has been obtained from the Chicago Housing Authority, including rent price and number of bedrooms per HCV household, community area, and zip code from 2013 to the first quarter of 2018. Similar data pertaining to the private rental market will be obtained through public records found through the United States Department of Housing and Urban Development. The datasets will be analyzed through statistical and mapping software to investigate the potential link between HCV households and distorted rent prices. Quantitative data will be supplemented by qualitative data to investigate the lived experience of Chicago residents. Qualitative data will be collected at community meetings in the Chicago Englewood neighborhood through participation in neighborhood meetings and informal interviews with residents and community leaders. The qualitative data will be used to gain insight on the lived experience of community leaders and residents of the Englewood neighborhood in relation to housing, the rental market, and HCV. While there is an abundance of quantitative data on this subject, this qualitative data is necessary to capture the lived experience of local residents effected by a changing rental market. This topic reflects concerns voiced by members of the Englewood community, and this study aims to keep the community relevant in its findings.

Keywords: Chicago, housing, housing choice voucher program, housing subsidies, rental market

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5426 Illness Experience Without Illness: A Qualitative Study on the Lived Experience of Young Adults During the COVID-19 Pandemic

Authors: Gemma Postil, Claire Zanin, Michael Halpin, Caroline Ritter

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Illness experience research typically focuses on people that are living with a medical condition; however, the broad consequences of the COVID-19 pandemic are impacting those without the virus itself, as many experienced extensive lockdowns, social isolation, and distress. Drawing on conceptual work in the illness experience literature, we argue that policy and social changes tied to COVID-19 produce biographical disruptions. In this sense, we argue that the COVID-19 pandemic produces illness experience without illness, as the pandemic comprehensively impacts health and biography. This paper draws on 30 in-depth interviews with young adults living in Prince Edward Island (PEI), which were conducted as part of a larger project to understand how young adults navigate compliance with the COVID-19 pandemic. We then inductively analyzed the interviews with a constructivist grounded theory approach. Specifically, we demonstrate that young adults living in PEI during the COVID-19 pandemic experienced biographical disruptions throughout the pandemic despite not contracting the virus. First, we detail how some participants experience biographical acceleration, with the pandemic accelerating relationships, home buying, and career planning. Second, we demonstrate biographical stagnation, wherein participants report being unable to pursue major life milestones. Lastly, we describe biographical regression, wherein participants feel they are losing ground during the pandemic and are actively falling behind their peers. These findings provide the novel application of illness experience concepts to the context of the COVID-19 pandemic, contribute to work on illness experience and ambiguity, and extend Bury’s conceptualization of biographical disruption. In conclusion, we demonstrate that young adults experienced the biographical disruption expected from having COVID-19 without having an illness, highlighting the depth to which the pandemic affected young adults.

Keywords: illness experience, lived experience, biographical disruption, COVID-19, young adults

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5425 Spirituality in Adults with Developmental Disabilities in the Practice of Pastoral Care Ministry

Authors: Olutayo Stephen Shodipo

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This paper explores how individuals with disabilities understand and express their spirituality like everyone else can help provide church ministers and religious leaders with new knowledge of human experience and change the way pastoral care ministry is being practiced with this population. Disability literature has revealed studies on various aspects of disability. However, on the spirituality of people with disabilities, there is a gap. This paper offers a brief overview of what has been studied on the spiritual needs of adults with developmental disabilities (ADDs) and the church and the gap that still exists. Along with explaining this gap, it considers the reality of ADDs’ spiritual needs and why the church needs to validate their spirituality and religious expressions and create an inclusive environment where their spiritual experience and expressions can be enhanced and supported. This paper, then, aims to explore the diverse spiritual experiences of ADDs in faith communities, and their theological, moral, and social implications for Pastoral care ministry practices.

Keywords: spirituality, inclusive ministry, pastoral theology, developmental disability, pastoral care

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5424 Living the Religious of the Virgin Mary (RVM) Educational Mission: A Grounded Theory Approach

Authors: Violeta Juanico

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While there was a statement made by the RVM Education Ministry Commission that its strength is its Ignacian identity, shaped by the Ignacian spirituality that permeates the school community leading to a more defined RVM school culture, there has been no empirical study made in terms of a clear and convincing conceptual framework on how the RVM Educational mission is lived in the Religious of the Virgin Mary (RVM) learning institutions to the best of author’s knowledge. This dissertation is an attempt to come up with a substantive theory that supports and explains the stakeholders’ experiences with the RVM educational mission in the Philippines. Participants that represent the different stakeholders ranging from students to administrators were interviewed. The expressions and thoughts of the participants were initially coded and analyzed using the Barney Glaser’s original grounded theory methodology to find out how the RVM mission is lived in the field of education.

Keywords: catholic education, grounded theory, lived experience, RVM educational mission

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5423 Determining Current and Future Training Needs of Ontario Workers Supporting Persons with Developmental Disabilities

Authors: Erin C. Rodenburg, Jennifer McWhirter, Andrew Papadopoulos

Abstract:

Support workers for adults with developmental disabilities promote the care and wellbeing of a historically underserved population. Poor employment training and low work satisfaction for these disability support workers are linked to low productivity, poor quality of care, turnover, and intention to leave employment. Therefore, to improve the lives of those within disability support homes, both client and caregiver, it is vital to determine where improvements to training and support for those providing direct care can be made. The current study aims to explore disability support worker’s perceptions of the training received in their employment at the residential homes, how it prepared them for their role, and where there is room for improvement with the aim of developing recommendations for an improved training experience. Responses were collected from 85 disability support workers across 40 Ontario group homes. Findings suggest most disability support workers within the 40 support homes feel adequately trained in their responsibilities of employment. For those who did not feel adequately trained, the main issues expressed were a lack of standardization in training, a need for more continuous training, and a move away from trial and error in performing tasks to support clients with developmental disabilities.

Keywords: developmental disabilities, disability workers, support homes, training

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5422 The Impact of Technology on Handicapped and Disability

Authors: George Kamil Kamal Abdelnor

Abstract:

Every major educational institution has incorporated diversity, equity, and inclusion (DEI) principles into its administrative, hiring, and pedagogical practices. Yet these DEI principles rarely incorporate explicit language or critical thinking about disability. Despite the fact that according to the World Health Organization, one in five people worldwide is disabled, making disabled people the larger minority group in the world, disability remains the neglected stepchild of DEI. Drawing on disability studies and crip theory frameworks, the underlying causes of this exclusion of disability from DEI, such as stigma, shame, invisible disabilities, institutionalization/segregation/delineation from family, and competing models and definitions of disability are examined. This paper explores both the ideological and practical shifts necessary to include disability in university DEI initiatives. It offers positive examples as well as conceptual frameworks such as 'divers ability' for so doing. Using Georgetown University’s 2020-2022 DEI initiatives as a case study, this paper describes how curricular infusion, accessibility, identity, community, and diversity administration infused one university’s DEI initiatives with concrete disability-inclusive measures. It concludes with a consideration of how the very framework of DEI itself might be challenged and transformed if disability were to be included.

Keywords: cognitive disability, cognitive diversity, disability, higher education disability, Standardized Index of Diversity of Disability (SIDD), differential and diversity in disability, 60+ population diversity, equity, inclusion, crip theory, accessibility

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5421 The Social Model of Disability and Disability Rights: Defending a Conceptual Alignment between the Social Model’s Concept of Disability and the Nature of Rights and Duties

Authors: Adi Goldiner

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Historically, the social model of disability has played a pivotal role in bringing rights discourse into the disability debate. Against this backdrop, the paper explores the conceptual alignment between the social model’s account of disability and the nature of rights. Specifically, the paper examines the possibility that the social model conceptualizes disability in a way that aligns with the nature of rights and thus motivates the invocation of disability rights. Methodologically, the paper juxtaposes the literature on the social model of disability, primarily the work of the Union of the Physically Impaired Against Segregation in the UK and related scholarship, with theories of moral rights. By focusing on the interplay between the social model of disability and rights, the paper provides a conceptual explanation for the rise of disability rights. In addition, the paper sheds light on the nature of rights, their function and limitations, in the context of disability rights. The paper concludes that the social model’s conceptualization of disability is hospitable to rights, because it opens up the possibility that there are duties that correlate with disability rights. Under the social model, disability is a condition that can be eliminated by the removal of social, structural, and attitudinal barriers. Accordingly, the social model dispels the idea that the actions of others towards disabled people will have a marginal impact on their interests in not being disabled. Equally important, the social model refutes the idea that in order to significantly serve people's interest in not being disabled, it is necessary to cure bodily impairments, which is not always possible. As rights correlate with duties that are possible to comply with, as well as those that significantly serve the interests of the right holders, the social model’s conceptualization of disability invites the reframing of problems related to disability in terms of infringements of disability rights. A possible objection to the paper’s argument is raised, according to which the social model is at odds with the invocation of disability rights because disability rights are ineffective in realizing the social model's goal of improving the lives of disabled by eliminating disability. The paper responds to this objection by drawing a distinction between ‘moral rights,’ which, conceptually, are not subject to criticism of ineffectiveness, and ‘legal rights’ which are.

Keywords: disability rights, duties, moral rights, social model

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5420 Developing Language Ownership: An Autoethnographic Perspective on Transformative Learning

Authors: Thomas Abbey

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This paper is part of an ongoing research addressing the experience of language learners in developing a sense of language ownership in their second language. For the majority of language learners, the main goal of learning a second or foreign language is to develop proficiency in the target language. Language proficiency comprises numerous intersecting competency skills ranging from causally listening to speaking using certain registers. This autoethnography analyzes lived experiences related to transitioning from learning a language in a classroom to being in an environment where the researcher's second language is the primary means of communication. Focused on lived experiences, the purpose of this research is to provide an insight into the experiences of language learners entering new environments and needing to navigate life within another language. Through reflections, this paper offers a critical account of experience traveling to Baku, Azerbaijan as a Russian language learner. The analysis for this paper focuses on the development of a sense of language ownership.

Keywords: autoethnography, language learning, language ownership, transformative learning

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5419 In the Eyes of Basilyo at Crispin: A Phenomenological Lived Experience of the Filipino Children of Parents with Mental Illness

Authors: Cely D. Magpantay, Geolynne Marie Adel, Cire-rine Mae Concepcion, Dessa Jean Orcajada, Jorgette Andrea Santos, Orian Laurace Canaman

Abstract:

Mental illness initiative is very relevant in promoting the Mental Health Bill act of 2017. In the Philippines alone, the public is more open and receptive to people at risks with a mental condition. Although it is uncommon that parents can become more psychologically unfit compared to their children, research shows that parents who are suffering from mental illness have a more significant negative effect than another family member. The impact of parent’s mental health can put their children more susceptible to acquire the same disorder. The aim of the study is to explore the lived experiences of children whose parents suffered from mental illness. It discusses how their parent's mental condition in, anyway, affects their psychological development. Using Phenomenological Qualitative Research, an in-depth, interview was conducted to five (5) consenting adults who lived with their parents diagnosed with a mental disorder. Results are clustered into four themes. The first theme is the negative emotion towards parents, the second theme is the psychosocial dynamics in caring for the patient, third is accepting the disease, and fourth is a general perspective on the family. Each themes is validated by experts and the participants. This theme generates subcomponent like isolation, shallow relationship and debt of gratitude. Along with these themes comes the fear of having a family emerged. There is a growing need to strengthen the family ties even more because of parent’s mental illness. Therefore, parental mental illness has an effect on the children’s psychological and social development.

Keywords: lived experience in Philippines, mental health, parental mental illness, psychosocial dynamics

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5418 Understanding the Experience of the Visually Impaired towards a Multi-Sensorial Architectural Design

Authors: Sarah M. Oteifa, Lobna A. Sherif, Yasser M. Mostafa

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Visually impaired people, in their daily lives, face struggles and spatial barriers because the built environment is often designed with an extreme focus on the visual element, causing what is called architectural visual bias or ocularcentrism. The aim of the study is to holistically understand the world of the visually impaired as an attempt to extract the qualities of space that accommodate their needs, and to show the importance of multi-sensory, holistic designs for the blind. Within the framework of existential phenomenology, common themes are reached through "intersubjectivity": experience descriptions by blind people and blind architects, observation of how blind children learn to perceive their surrounding environment, and a personal lived blind-folded experience are analyzed. The extracted themes show how visually impaired people filter out and prioritize tactile (active, passive and dynamic touch), acoustic and olfactory spatial qualities respectively, and how this happened during the personal lived blind folded experience. The themes clarify that haptic and aural inclusive designs are essential to create environments suitable for the visually impaired to empower them towards an independent, safe and efficient life.

Keywords: architecture, architectural ocularcentrism, multi-sensory design, visually impaired

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5417 Disability and Quality of Life in Low Back Pain: A Cross-Sectional Study

Authors: Zarina Zahari, Maria Justine, Kamaria Kamaruddin

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Low back pain (LBP) is a major musculoskeletal problem in global population. This study aimed to examine the relationship between pain, disability and quality of life in patients with non-specific low back pain (LBP). One hundred LBP participants were recruited in this cross-sectional study (mean age = 42.23±11.34 years old). Pain was measured using Numerical Rating Scale (11-point). Disability was assessed using the revised Oswestry low back pain disability questionnaire (ODQ) and quality of life (QoL) was evaluated using the SF-36 v2. Majority of participants (58%) presented with moderate pain and 49% experienced severe disability. Thus, the pain and disability were found significant with negative correlation (r= -0.712, p<0.05). The pain and QoL also showed significant and positive correlation with both Physical Health Component Summary (PHCS) (r= .840, p<0.05) and Mental Health Component Summary (MHCS) (r= 0.446, p<0.05). Regression analysis indicated that pain emerged as an indicator of both disability and QoL (PHCS and MHCS) accounting for 51%, 71% and 21% of the variances respectively. This indicates that pain is an important factor in predicting disability and QoL in LBP sufferers.

Keywords: disability, low back pain, pain, quality of life

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5416 Mothering in Self- Defined Challenging Circumstances: A Photo-Elicitation Study of Motherhood and the Role of Social Media

Authors: Joanna Apps, Elena Markova

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Concepts of the ideal mother and ideal mothering are disseminated through familial experiences, religious and cultural depictions of mothers and the national media. In recent years social media can also be added to the channels by which mothers and motherhood are socially constructed. However, the gulf between these depictions, -or in the case of social media ‘self-curations’ - of motherhood and lived experience has never been wider, particularly for women in disadvantaged or difficult circumstances. We report on a study of four lone mothers who were living with one or more of the following: limiting long term illness, large families, in temporary accommodation and on low incomes. The mothers were interviewed 3 times and invited to take a series of photos reflecting their lives in between each of the interviews. These photographs were used to ground the interviews in lived experience and as stimuli to discuss how the images within them compared to portrayals of mothers and motherhood that participants were exposed to on social media. The objectives of the study were to explore how mothers construct their identity in challenging and disadvantaged circumstances; to consider what their photographs of everyday life tell us about their experiences and understand the impact idealised images of motherhood have on real mothers in difficult circumstances. The results suggested that the mothers both strived to adhere to certain ideals of motherhood and acknowledged elements of these as partially or wholly impossible to achieve. The lack of depictions, in both national and social media, of motherhood that corresponded with their lived experience inhibited the mothers’ use of social media. Other themes included: lack of control, frustration and strain; and parental pride, love, humour, resilience, and hope.

Keywords: motherhood, social media, photography, poverty

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5415 Care as a Situated Universal: Defining Care as a Practical Phenomenology Study

Authors: Amanda Aliende da Matta

Abstract:

This communication presents an aspect of phenomenon selection in an applied hermeneutic phenomenology study on care and vulnerability: the need to consider it as a situated universal. For that, we will first present the study and its methodology. Secondly, we will expose the need to understand phenomena as situation-defined, incorporating feminist thought. In an informatics class for 14 year olds, we explained the exercise: students have to make a 5 slide presentation about a topic of their choice. A does it on streetwear, B on Cristiano Ronaldo, C on Marvel, but J did it on Down Syndrome. Introducing it to the class, J explains the physical and cognitive differences caused by trisomy; when asked to explain it further, he says: "they are angels, teacher," and shows us a poster on his cellphone that says: if you laugh at a different child he will laugh with you because his innocence outweighs your ignorance. The anecdote shows, better than any theoretical explanation, something that some vulnerable people have; something beautiful and special but difficult to define. Let's call this something caring. The research has the main objective of accounting for the experience of caregiving in vulnerability, and it will be carried out with Applied Hermeneutic Phenomenology (AHP). The method's objective is to investigate the lived human experience in its pre-reflexive dimension to know its meaning structures. Contrary to other research methods, AHP does not produce theory about a specific context but seeks the meaning of the lived experience, in its characteristic of human experience. However, it is necessary that we understand care as defined in a concrete situation. We cannot start the research with an a priori definitive concept of care, or we would fall into the mistake of closing ourselves to only what we already know, as explained by Levinas. We incorporate, then, the notion of situated universals. Loyal to phenomenology, the definition of the phenomenon should start with an investigation of the word's etymology: the word cura, in its etymological root, means care. And care comes from the Latin word cogitātus/cōgĭto, which means "to pursue something in mind" and "to consider thoroughly." The verb cōgĭto, meanwhile, is composed of co- (altogether) and agitare (to deal with or think committedly about something, to concern oneself with) / ăgĭto (to set in motion, to move). Care, therefore, has in its origin a meditation on something, a concern about something, a verb that has a sense of action and movement. To care is to act out of concern for something/someone. This etymology, though, is not the final definition of the phenomenon, but only its skeleton. It needs to be embodied in the concrete situation to become a possible lived experience. And that means that the lived experience descriptions (LEDs) should be selected by taking into consideration how and if care was engendered in that concrete experience. Defining the phenomenon has to take into consideration situated knowledge.

Keywords: applied hermeneutic phenomenology, care ethics, hermeneutics, phenomenology, situated universalism

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5414 The Lived Experience of Thai Mothers Living with HIV in Southern Thailand

Authors: Dusanee Suwankhong, Pranee Liamputtong

Abstract:

Mothers living with HIV tend to experience stigma and discrimination which has an impact on their psychological and social well-being and their human rights. This paper explores the lived experience of Thai mothers with HIV in their family. In-depth interviewing and drawing methods were employed to gain a deep understanding on the experience of 30 HIV-positive mothers in the southern community of Thailand. The data was analyzed using thematic analysis method. We found that the majority of HIV-positive mothers learned about their HIV status through blood test services during their antenatal care, but some decided to visit a doctor when their partner became chronically frail and showed some signs indicating HIV/AIDS. Learning about their HIV gave them a great shock, and they could not believe that they were infected with HIV/AIDS. They feared that their illness would be disclosed and hence attempted to keep their HIV secret. This was due to the fact that people in their community would blame and labeled them as a ‘disgusting person’. Besides, they would be separated from social contacts and networks, their individual rights would be disregarded, and their potential roles would be restricted. Although participants suggested that people had more positive view on HIV-infected person nowadays, all still wanted to keep it secret because of fear of stigma and discrimination. Thai health care has provided various kinds of support programs, but many mothers chose not to participate due to the fear of disclosure. However, the women attempted to seek some strategies to live a life which would be more acceptable by the community. We conclude that HIV is still seen as a stigmatised disease in rural community of southern Thailand. Local health care providers and relevant sectors in the locality should create suitable programs to enhance self-worth among those HIV-positive mothers because this could increase a quality of life of this vulnerable mothers. Providing sufficient and appropriate supports for better emotional wellbeing is an essential role of health professionals so that the feeling of isolation among these women could be eliminated and positive social justice can be achieved.

Keywords: HIV-positive mothers, lived experience, southern Thailand, stigma and discrimination

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5413 Functional Analysis of Barriers in Disability Care Research: An Integrated Developmental Approach

Authors: Asma Batool

Abstract:

Immigrant families raising a child with developmental disabilities in Canada encounter many challenges during the process of disability care. Starting from the early screening of their child for diagnosis followed by challenges associated with treatment, access and service utilization. A substantial amount of research focuses on identifying barriers. However, the functional aspects of barriers in terms of their potential influences on parents and children with disabilities are unexplored yet. This paper presents functional analysis of barriers in disability care research by adopting a method of integrated approach. Juxtaposition of two developmental approaches, Bronfenbrenner’s ecological model and parents ‘transformational process model is generating multiple hypotheses to be considered while empirically investigating causal relationships and mediating or moderating factors among various variables related with disability care research. This functional analysis suggests that barriers have negative impacts on the physical and emotional development of children with disabilities as well as on the overall quality of family life (QOFL). While, barriers have facilitating impacts on parents, alternatively, the process of transformation in parents expedite after experiencing barriers. Consequently, parents reconstruct their philosophy of life and experience irreversible but continuous developmental change in terms of transformations simultaneously with their developing child and may buffer the expected negative impacts of barriers on disabled child and QOFL. Overall, this paper is suggesting implications for future research and parents’ transformations are suggesting potential pathways to minimize the negative influences of barriers that parents experience during disability care, hence improving satisfaction in QOFL in general.

Keywords: barriers in disability care, developmental disabilities, parents’ transformations, quality of family life

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5412 Nurse Metamorphosis: Lived Experience in the RN HEALS Proram

Authors: Dennis Glen G. Ramos, Angelica S. Mendoza, Juliene Marie A. Alvarez, Claudette A. Nagal, Kayzee C. Blanza, Jayson M. Narbonita, John Anthony D. Dayot, Rebecca M. Reduca, Jermaine Jem M. Flojo, Michael E. Resultan, Clyde C. Fomocod, Cindy A. Vinluan, Jeffrie Aleona Mari C. Maclang

Abstract:

RN HEALS, an acronym for Registered Nurses for Health Enhancement and Local Service, is expected to address the shortage of skilled and experienced nurses in 1,221 rural and unserved or underserved communities for one year. The study would like to explore the lived experiences of the nurses deployed under this program.The study is a Descriptive Qualitative Research. Interview was utilized as a data gathering tool. Six community nurses who are deployed under the RN HEALS program are included in the study. Van Kaam method was used as data management. Data gathering was done from October to December 2013.Two themes emerged in the study; Value and Challenge. Under Value, it had three sub-themes; Job Satisfaction, Upholding Competency, including Personal Development and Professional Growth, and Employability. While under Challenge, it had one sub-theme, Job Stress. The study concludes that nurses adapt to strategies to pursue personal and professional competence and an evolutionary journey. The researchers recommend that Health Administrators improve the work environment of nurses to lessen the challenges experienced by nurses.

Keywords: lived experience, RN HEALS, health enhancement, local service

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5411 Disability Prevalence and Health among 60+ Population in India

Authors: Surendra Kumar Patel

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Disability is not just a health problem; it is a complex phenomenon, reflecting the interaction between features of a person’s age and physiology. Population ageing is a major demographic issue for India in the 21st century. Older population of India constituted 8% of total population, while 5.19% has affected by disability of older age group. Objective of the present research paper is to examine the state wise differential in disability among 60+ population and to access the health care of disabled population especially the 60+ disabled persons. The data sources of the present paper are census 2001 and 2011. For analyzing the state wise differentials by disability types and comparative advantage of data, rate, ratio, and percentage have been used. The Standardized Index of Diversity of Disability (SIDD) studies differential and diversity in disability. The results show that there are 5.19% persons have disability among 60+ population and sex differential not very significant, as it is 5.3 % of male and 5.05% in female in India but place of residence shows significant variation from 2001 to 2011 census. There is huge diversity in disability prevalence among 60+ in India, highest in Sikkim followed by Rajasthan, approximately, they comprise 11%, and the lowest found in Tamil Nadu as 2.53%. This huge gap in prevalence percentage shows the health care needs of highly prevailing states.

Keywords: disability, Standardized Index of Diversity of Disability (SIDD), differential and diversity in disability, 60+ population

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5410 A Critical Discourse Analysis: Embedded Inequalities in the UK Disability Social Security System

Authors: Cara Williams

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In 2006, the UK Labour government published a Green Paper introducing Employment and Support Allowance (ESA) as a replacement for Incapacity Benefit (IB), as well as a new Work Capability Assessment (WCA); signalling a controversial political and economic shift in disability welfare policy. In 2016, the Conservative government published Improving Lives: The Work, Health, and Disability Green Paper, as part of their social reform agenda, evidently to address the ‘injustice’ of the ‘disability employment gap’. This paper contextualises ESA in the wider ideology and rhetoric of ‘welfare to work’, ‘dependency’ and ‘responsibility’. Using the British ‘social model of disability’ as a theoretical framework, the study engages in a critical discourse analysis of these two Green Papers. By uncovering the medicalised conceptions embedded in the texts, the analysis has revealed ESA is linked with late capitalisms concern with the ‘disability category’.

Keywords: disability, employment, social security, welfare

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5409 Cultural and Group Understandings of Disability and Sexuality

Authors: Luke Galvani

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The cultural representations of people with disabilities are frequently biased which can lead to a general misunderstanding of disability. Representations of disabled deviance are especially problematic given that they typify or generally abstract disability as being abnormal, which then begin to take root in the cultural mind. This study utilizes critical discourse analysis to investigate how discourses of disabled sexual deviance are promoted within two major films that portray disabled sexual subjects. The findings indicate that perceptions of disabled sexual deviance are heightened by cinematic representations of sex and disability, which characterize disabled sexual expression as being undesirable due to the ephemeral and abnormal qualities ascribed to it.

Keywords: deviance, disability, discourse analysis, sexuality

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5408 Disciplined Care for Disciplined Patients: Results from Daily Experiences of Hospitalized Patients with Blindness

Authors: Mahmood Shamshiri

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While visual sensation is the key gate for human-being to understand the world, visual impairment is one of the common cause of disability around the world. There is no doubt about the importance of eye sight in daily life among people, even it is understood the best gift of God to human-beings in many societies. Blind people are admitted to hospital for different health issues. Nurses and other health professionals who provide care for this group of patients need to understand their patients. Understanding the lived experience of blind people helps nurses to expand their knowledge regarding blind patients in order to provide a holistic care and improve the quality of care for blind patients. This phenomenological inquiry aimed to describe the meaning of discipline in daily life of blind people admitted in hospital. An interpretive phenomenology underpinned the philosophical approach of the study. While the interpretive phenomenology played as an umbrella role in the overall point of the study, the six methodical activities which introduced by van Manen helped the researchers to conduct the study. ‘Disciplined care for disciplined patients’ was the main theme emerged from dialogues of blind patients about their daily life in the hospital. Almost all of participants called themselves as disciplined people. The theme ‘disciplined care for disciplined patients’ appeared from four sub-themes including discipline through careful touching and listening, discipline as the ideal way of existence, discipline the preferred way of being independent, desire to take disciplined and detailed care, reactions to the undisciplined caring culture. This phenomenological inquiry to the experiences of patients with blindness in hospital revealed that they commonly are disciplined people and want to be cared in well-organized caring environment. Furthermore, they need to be familiar with the new caring environment. Well-organized and familiar environment help blind patients to increase the level of independency. In addition, blind patients prefer a detail informed and disciplined caring culture. Health professionals have to consider the concept of disciplined care in order to provide a holistic and comprehensive competent care.

Keywords: disciplined people, disciplined care, lived experience, patient with blindness

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