Search results for: family adjustment to the disability experience

Authors: Hamzeh Awad

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Disability is considered to be a worldwide complex phenomenon which rising at a phenomenal rate and caused by many different factors. Chronic diseases such as cardiovascular disease and diabetes can lead to mobility disability in particular and disability in general. The ICF is an integrative bio-psycho-social model of functioning and disability and considered by the World Health Organization (WHO) to be a reference for disability classification using its categories and core set to classify disorder’s functional limitations. Specialist programs at Sultan Bin Abdul Aziz Humanitarian City (SBAHC) are providing both inpatient and outpatient services have started to implement the ICF and use it as a problem solving tool in Rehab. Diabetes is leading contributing factor for disability and considered epidemic in several Gulf countries including the Kingdom of Saudi Arabia (KSA), where its prevalence continues to increase dramatically. Metabolic disorders, mainly diabetes are not well covered in Rehab field. The purpose of this study is present to research and clinical rehabilitation field of DREAM and ICF as a framework in clinical and research setting in Rehab service. Also, shed the light on using the ICF as problem solving tool at SBAHC. There are synergies between disability causes and wider public health priorities in relation to both chronic disease and disability prevention. Therefore, there is a need for strong advocacy and understanding of the role of ICF as a reference in Rehab settings in Middle East if we wish to seize the opportunity to reverse current trends of acquired disability in the region.

Keywords: international classification of functioning, disability and health (ICF), prototype, rehabilitation and diabetes

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Authors: Momoka Sunohara, Ashley J. Lemieux, Esther Yakobov, Andrew G. Ryder, Tomas Jurcik

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Immigration brings changes in many aspects of an individual's life, from social support dynamics, to housing and language, as well as difficulties with regards to discrimination, trauma, and loss. Past research has mostly emphasized individual differences in mental health and has neglected the impact of social-ecological context, such as acculturation and ethnic density. Purpose: The present study aimed to assess the relationship between variables associated with social integration such as perceived ethnic density and ways of coping, as well as psychological adjustment in a rapidly growing non-visible minority group of immigrants in Canada. Data: A small subset of an archival data from our previously published study was reanalyzed with additional variables. Data included information from 269 Russian-Speaking immigrants in Montreal, Canada. Method: Canonical correlation analysis (CCA) investigated the relationship between two sets of variables. SAS PROC CANCORR was used to conduct CCA on a set of social integration variables, including ethnic density, discrimination, social support, family functioning, and acculturation, and a set of psychological well-being variables, including distress, depression, self-esteem, and life satisfaction. In addition, canonical redundancy analysis was performed to calculate the proportion of variances of original variables explained by their own canonical variates. Results: Significance tests using Rao’s F statistics indicated that the first two canonical correlations (i.e., r1 = 0.64, r2 = 0.40) were statistically significant (p-value < 0.0001). Additionally, canonical redundancy analysis showed that the first two well-being canonical variates explained separately 62.9% and 12.8% variances of the standardized well-being variables, whereas the first two social integration canonical variates explained separately 14.7% and 16.7% variances of the standardized social integration variables. These results support the selection of the first two canonical correlations. Then, we interpreted the derived canonical variates based on their canonical structure (i.e., correlations with original variables). Two observations can be concluded. First, individuals who have adequate social support, and who, as a family, cope by acquiring social support, mobilizing others and reframing are more likely to have better self-esteem, greater life satisfaction and experience less feelings of depression or distress. Second, individuals who feel discriminated yet rate higher on a mainstream acculturation scale, and who, as a family, cope by acquiring social support, mobilizing others and using spirituality, while using less passive strategies are more likely to have better life satisfaction but also higher degree of depression. Implications: This model may serve to explain the complex interactions that exist between social and emotional adjustment and aid in facilitating the integration of individuals immigrating into new communities. The same group may experience greater depression but paradoxically improved life satisfaction associated with their coping process. Such findings need to be placed in the context of Russian cultural values. For instance, some Russian-speakers may value the expression of negative emotions with significant others during the integration process; this in turn may make negative emotions more salient, but also facilitate a greater sense of family and community connection, as well as life satisfaction.

Keywords: acculturation, ethnic density, mental health, Russian-speaking

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Authors: Ammal M. Metwally, Dalia M. Elmosalami, Walaa A. Fouad, Abla G. Khalifa, Lobna A. El Etreby, Mohamed AbdelRahman

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People with hepatitis C are likely to experience psychological distress related to adjustment issues following diagnosis. Objective: The study was conducted to determine the psycho-social stressors accompanying Hepatitis C virus (HCV) chronic infection. The study focused on immediate and later on reactions to being diagnosed as infected HCV patients. Effect of HCV on disruption of patients’ relationships in term of family relationship and friendship, employment and financial status was assessed. The magnitude and causes of the social stigma and its relation to awareness about illness, level of education were also assessed. Methods: During this study the subjective experiences of people having HCV was explored through a designed questionnaire targeted 540 cases; 359 males and 181 females from ten out of 21 National Treatment Reference Centers of National Hepatology and Tropical Medicine Research Institutes of Ministry of Health (MOH) hospitals. The study was conducted along a period of six months from September 2011 to March 2012. Results: The study revealed that the financial problems are the commonest problems faced by 75.5 % of the cases. More than 70% of the cases suffered from immediate sadness versus 67.4% suffered from worry. Social stigma was reported by 13 % of HCV +patients, the majority of which were females. Conclusions: Exploring the psychosocial consequences of HCV infection can act as pressing motivators for behavior change needed for limiting HCV endemicity in Egypt.

Keywords: Egypt, HCV infection, psycho-social adjustment, stigma

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Authors: Yu Li, Dongyao Wang, Xiaobao Sun, Wei Ni

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In long-term evolution (LTE), the carriers around 5GHz are planned to be utilized without licenses to further enlarge system capacity. This feature is termed licensed assisted access (LAA). The channel sensing (clean channel assessment, CCA) is required before any transmission on these unlicensed carriers, in order to make sure the harmonious co-existence of LAA with other radio access technology in the unlicensed band. Obviously, the CCA threshold is very critical, which decides whether the transmission right following CCA is delivered in time and without collisions. An improper CCA threshold may cause buffer overflow of some eNodeBs if the eNodeBs are heavily loaded with the traffic. Thus, to solve these problems, we propose an adaptive threshold adjustment method for CCA in the LAA downlink. Both the load and transmission opportunities are concerned. The trend of the LAA throughput as the threshold varies is obtained, which guides the threshold adjustment. The co-existing between LAA and Wi-Fi is particularly tested. The results from system-level simulation confirm the merits of our design, especially in heavy traffic cases.

Keywords: LTE, LAA, CCA, threshold adjustment

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Authors: Milena Trojanowska

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Disability is a phenomenon for which meanings and definitions have evolved over the decades. This became the trigger to start a project to answer the question of what disability constitutes in the course of an incurable chronic disease. The chosen research group are people living with multiple sclerosis.The contextual phase of the research was participant observation at the Polish Multiple Sclerosis Society, the largest NGO in Poland supporting people living with MS and their relatives. The research techniques used in the project are (in order of implementation): group interviews with people living with MS and their relatives, narrative interviews, asynchronous technique, participant observation during events organised for people living with MS and their relatives.The researcher is currently conducting follow-up interviews, as inaccuracies in the respondents' narratives were identified during the data analysis. Interviews and supplementary research techniques were used over the four years of the research, and the researcher also benefited from experience gained from 12 years of working with NGOs (diaries, notes). The research was carried out in Poland with the participation of people living in this country only.The research has been based on grounded theory methodology in a constructivist perspectivedeveloped by Kathy Charmaz. The goal was to follow the idea that research must be reliable, original, and useful. The aim was to construct an interpretive theory that assumes temporality and the processualityof social life. TheAtlas.ti software was used to collect research material and analyse it. It is a program from the CAQDAS(Computer-Assisted Qualitative Data Analysis Software) group.Several key factors influencing the construction of a disability identity by people living with multiple sclerosis was identified:-course of interaction with significant relatives,- the expectation of identification with disability (expressed by close relatives),- economic profitability (pension, allowances),- institutional advantages (e.g. parking card),- independence and autonomy (not equated with physical condition, but access to adapted infrastructure and resources to support daily functioning),- the way a person with MS construes the meaning of disability,- physical and mental state,- medical diagnosis of illness.In addition, it has been shown that making an assumption about the experience of disability in the course of MS is a form of cognitive reductionism leading to further phenomenon such as: the expectation of the person with MS to construct a social identity as a person with a disability (e.g. giving up work), the occurrence of institutional inequalities. It can also be a determinant of the choice of a life strategy that limits social and individual functioning, even if this necessity is not influenced by the person's physical or psychological condition.The results of the research are important for the development of knowledge about the phenomenon of disability. It indicates the contextuality and complexity of the disability phenomenon, which in the light of the research is a set of different phenomenon of heterogeneous nature and multifaceted causality. This knowledge can also be useful for institutions and organisations in the non-governmental sector supporting people with disabilities and people living with multiple sclerosis.

Keywords: disability, multiple sclerosis, grounded theory, poland

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Authors: Esther Mafunda

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The present study interrogated the lecturer’s skills in supporting visually impaired students during the Covid-19 era at the University of Zimbabwe. It particularly assesses how the Covid-19 pandemic affected the learning experience of visually impaired students and which skills the lecturers possessed in order to assist the visually impaired students during online learning. Data was collected from lecturers and visually impaired students at the University of Zimbabwe Disability Resource Centre. Data was collected through the use of interviews and questionnaires. Using content analysis, it was established that visually impaired students faced challenges of lack of familiarity with the Moodle learning platform, marginalization, lack of professional training, and lack of training for parents and guardians. Lecturers faced challenges of lack of training, the curriculum, access, and technical know-how deficit. It was established that lecturers had to resort to social media platforms in order to assist visually impaired students. Visually impaired students also received assistance from their friends and family members. On the basis of the results of the research, it can be concluded that lecturers needed in-service training to be provided with the necessary skills and knowledge to teach students with visual impairments and provide quality education to students with visual impairments.

Keywords: visual impairment, disability, covid-19, inclusive learning

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Authors: Mehena Fedoul

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This paper examines the intersection of race, gender, and disability through a Critical disability race theory and black feminist disability perspective in Keah Brown's memoir, "The Pretty One." The background of the study highlights the significance of intersectionality in understanding the multifaceted experiences of individuals who navigate multiple marginalized identities. The study contributes to the underrepresented field of disability studies from Critical race and black feminist perspectives, shedding light on the unique challenges and resilience of black disabled women. The study employs a qualitative analysis of Keah Brown's memoir as a primary text. Drawing on intersectionality theory and black feminist disability scholarship, the analysis focuses on how Brown's memoir illuminates the ways in which her race, gender, and disability intersect and shape her lived experiences. The analysis reveals how Brown's memoir challenges traditional notions of disability, beauty, and empowerment through the unapologetic celebration of her blackness, femaleness, and disability. The major findings of the study indicate that Brown's memoir provides a powerful narrative of the complexity, uniqueness and richness of the lived experiences of black disabled women. It demonstrates how the intersectionality of race, gender, and disability shapes Brown's identity, body image, relationships, and societal interactions. The paper also highlights how Brown's memoir emphasizes the importance of inclusivity and intersectionality in understanding and addressing the challenges faced by black disabled women. In conclusion, this study offers a critical analysis of the intersection of race, gender, and disability in Keah Brown's memoir, "The Pretty One," from a black feminist disability perspective. It contributes to the growing body of literature that recognizes the significance of intersectionality in understanding the experiences of marginalized individuals in the disability community. The study underscores the need for more inclusive and intersectional perspectives in disability studies and advocates for greater recognition of the voices and experiences of black disabled women in academic and societal discourse.

Keywords: disability studies, intersectionality, black feminism, Keah Brown

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Authors: Ali Alshahrani, Adel Almaai, Saad Garni

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Aim of the study: To explore duration and determinants of consultation time at a family medicine center. Methodology: This study was conducted at the Family Medicine Center in Ahad Rafidah City, at the southwestern part of Saudi Arabia. It was conducted on the working days of March 2013. Trained nurses helped in filling in the checklist. A total of 459 patients were included. A checklist was designed and used in this study. It included patient’s age, sex, diagnosis, type of visit, referral and its type, psychological problems and additional work-up. In addition, number of daily bookings, physician`s experience and consultation time. Results: More than half of patients (58.39%) had less than 10 minutes’ consultation (Mean+SD: 12.73+9.22 minutes). Patients treated by physicians with shortest experience (i.e., ≤5 years) had the longest consultation time while those who were treated with physicians with the longest experience (i.e., > 10 years) had the shortest consultation time (13.94±10.99 versus 10.79±7.28, p=0.011). Regarding patients’ diagnosis, those with chronic diseases had the longest consultation time (p<0.001). Patients who did not need referral had significantly shorter consultation time compared with those who had routine or urgent referral (11.91±8.42,14.60±9.03 and 22.42±14.81 minutes, respectively, p<0.001). Patients with associated psychological problems needed significantly longer consultation time than those without associated psychological problems (20.06±13.32 versus 12.45±8.93, p<0.001). Conclusions: The average length of consultation time at Ahad Rafidah Family Medicine Center is approximately 13 minutes. Less-experienced physicians tend to spend longer consultation times with patients. Referred patients, those with psychological problems, those with chronic diseases tend to have longer consultation time. Recommendations: Family physicians should be encouraged to keep their optimal consultation time. Booking an adequate number of patients per shift would allow the family physician to provide enough consultation time for each patient.

Keywords: consultation, quality, medicine, clinics

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Authors: A. M. Sultana, Norhirdawati Binti Mhd Zahir, Norzalan Hadi Yaacob

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Recently in Malaysia, women's participation in teaching profession has increased. The increasing trend of women’s participation in the teaching profession poses challenges in families, especially in the developing countries like Malaysia. One of these challenges, concerns in balancing their role between family and job responsibility that faced by many women teachers. The purpose of this study is to discover how women teachers' impact on family happiness and the challenges faced by them in balancing their role between family and job responsibility. The findings presented in this study are based on survey research in a secondary school Dato’ Bijaya Setia in the district of Gugusan Manjoi which is located in Kedah, Malaysia. The study found that employment of women in economic activity has several beneficial impacts of improving the economic condition of the family. The results also revealed that in low income earning families, both husbands and wives’ employment contribute to the family income that less likely to experience of family poverty. The study also showed despite women's teachers’ significant role towards the overall development of the family, the majority of women teachers encountered a number of difficulties in balancing their role between family and job responsibility especially when they need to work more than the normal working time. Therefore, it is common for the majority of women suffering from psychological stress when they are unable to complete the task at a fixed time. The present study also suggests implication of family friendly policy and its appropriate practice to support the women teachers who are significantly contributing to family, community and the country.

Keywords: emotional exhaustion, family friendly policy, work family conflict, women teacher

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Authors: Mark Linden, Trisha Forbes, Michael Brown, Lynne Marsh, Maria Truesdale, Stuart Todd, Nathan Hughes

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Background The COVID-19 pandemic resulted in a reduction of health care services for many family carers of people with profound and multiple intellectual disabilities (PMID). Due to lack of services, family carers turned to charities for support during the pandemic. We explored the views of charity workers across the UK and Ireland who supported family carers during the COVID-19 pandemic and explored their views on effective online support programmes for family carers. Methods This was a qualitative study using online focus groups with participants (n = 24) from five charities across the UK and Ireland. Questions focused on challenges, supports, coping and resources which helped during lockdown restrictions. Focus groups were audio recorded, transcribed verbatim, and analysed through thematic analysis. Findings Four themes were identified (i) ‘mental and emotional health’, (ii) ‘they who shout the loudest’ (fighting for services), (iii) ‘lack of trust in statutory services’ and (iv) ‘creating an online support programme’. Mental and emotional health emerged as the most prominent theme and included three subthemes named as ‘isolation’, ‘fear of COVID-19’ and ‘the exhaustion of caring’. Conclusions The withdrawal of many services during the COVID-19 pandemic further isolated and placed strain on family carers. Even after the end of the pandemic family cares continue to report on the struggle to receive adequate support. There is a critical need to design services, including online support programmes, in partnership with family carers which adequately address their needs.

Keywords: intellectual disability, family carers, COVID-19, charities

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Authors: Wike Wike

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The aim of this study is to investigate the experience of mothers of autistic children in Indonesia in raising the children and obtaining services for them through the adequate of information. The study seeks to contribute to the knowledge emerging from the women as a mother of children with autism on health and disability area. There is silence in the Indonesian literature on this perspective, especially about the parents and/or mothers of autistic children that is the focus of this analysis. Therefore, in order to capture the points of view emerging from the mothers, a qualitative study design has been applied. The main data for this qualitative study was collected from interviews (semi-structured interview and focus group discussion) with the mothers of children with autism who are member of parenting group in autistic schools and rehabilitation centers in one of Indonesian regional cities. This study reveals that the mothers’ experience in raising a child who is diagnosed with autism is rooted in limited knowledge on autism, limited knowledge on availability of services and limited knowledge on service options. Compounding this is limited availability and accessibility of the services that are important to their child's development. An important contribution of this study is to show how tapping into the experience of mothers can provide much needed information to policy making and service planners and implementers that can improve the services for children with autism and their families.

Keywords: mothers, children with autism, disability services and policy, services

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Authors: Jasmin Glock

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Media plays a significant role in terms of shaping and influencing people’s perception of various themes, including disability. Although recent examples indicate progressive attitudes in society, programs across genres continue to portray disability in a negative and stereotypical way. Such a one-sided or stereotypical portrayal of disabled people can further reinforce their marginalized position by turning them into the other. The common trope of the blind or visually impaired woman, for example, marks the character as particularly vulnerable. These stereotypes are easily absorbed and left unquestioned, especially by younger audiences. As a result, the presentation of disability as problematic or painful can instill a subconscious fear of disability in viewers at a very young age. Now the question arises, how can disability be portrayed to children in a more positive way? This paper focuses on the portrayal of physical disability in children’s programming. Using disabled characters from Nickelodeon’s Avatar: The Last Airbender and Avatar: The Legend of Korra, the paper will show that the chosen animated characters have the potential to challenge and subvert disability-based bias and to contribute to the normalization of disability on screen. Analyzing blind protagonist Toph Beifong, recurring support character and wheelchair user Teo, and villain Ming Hua who has prosthetic limbs, this paper aims at highlighting that these disabled characters are far more than mere stereotyped tokens. Instead, they are crucial to the outcome of the story. They are strong and confident while still being allowed to express their insecurities in certain situations. The paper also focuses on how these characters can make disability issues relatable to disabled and non-disabled young audiences alike and how they can thereby contribute to the reduction of prejudice. Finally, they will serve as an example of what inclusive, nuanced, and even empowering disability representation in animated television series can look like.

Keywords: Children, disability, representation, television

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Authors: Rachel Jones

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Systemic Family therapy in the Queensland Foster Care System is the implementation of Integrative Practice as a purposeful intervention implemented with complex ‘family’ systems (by expanding the traditional concept of family to include all relevant stakeholders for a child) and is shown to improve the overall wellbeing of children (with developmental delays and trauma) in Queensland out of home care contexts. The importance of purposeful integrative practice in the field of systemic family therapy has been highlighted in achieving change in complex family systems. Essentially, it is the purposeful use of multiple interventions designed to meet the myriad of competing needs apparent for a child (with developmental delays resulting from early traumatic experiences - both in utero and in their early years) and their family. In the out-of-home care context, integrative practice is particularly useful to promote positive change for the child and what is an extended concept of whom constitutes their family. Traditionally, a child’s family may have included biological and foster care family members, but when this concept is extended to include all their relevant stakeholders (including biological family, foster carers, residential care workers, child safety, school representatives, Health and Allied Health staff, police and youth justice staff), the use of integrative family therapy can produce positive change for the child in their overall wellbeing, development, risk profile, social and emotional functioning, mental health symptoms and relationships across domains. By tailoring therapeutic interventions that draw on systemic family therapies from the first and second-order schools of family therapy, neurobiology, solution focussed, trauma-informed, play and art therapy, and narrative interventions, disability/behavioural interventions, clinicians can promote change by mixing therapeutic modalities with the individual and their stakeholders. This presentation will unpack the implementation of systemic family therapy using this integrative approach to formulation and treatment for a child in out-of-home care in Queensland (experiencing developmental delays resulting from trauma). It considers the need for intervention for the individual and in the context of the environment and relationships. By reviewing a case example, this study aims to highlight the simultaneous and successful use of pharmacological interventions, psychoeducational programs for carers and school staff, parenting programs, cognitive-behavioural and trauma-informed interventions, traditional disability approaches, play therapy, mapping genograms and meaning-making, and using family and dyadic sessions for the system associated with the foster child. These elements of integrative systemic family practice have seen success in the reduction of symptoms and improved overall well-being of foster children and their stakeholders. Accordingly, a model for best practice using this integrative systemic approach is presented for this population group and preliminary findings for this approach over four years of local data have been reviewed.

Keywords: systemic family therapy, treating families of children with delays, trauma and attachment in families systems, improving practice and functioning of children and families

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Authors: Angelika Magiera, Weronika Penar, Czesław Klocek

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Intellectual disability (ID) affects approximately 1.55% of children and adults in the society of developed countries. Depending on the ID degree, the patient is burdened with additional disease entities. Intellectual disability does not only limits a person’s opportunities to participate in social life but also affects whole families. People with ID belong to the group of risk of mental illnesses, they are less emotionally stable, while families are predisposed to depression. The study was held in a day care center for people with intellectual disabilities (of various degrees of disability) on 26 people. Nurses and carers also took part. The age range of study groups ranged from 22 to 67 years. Therapeutic classes were held for four independent mixed groups (sex and intellectual disability degree) from 6 to 7 people each, lasting no more than 30 minutes. They were created by the facility's staff to make sure that a group is stable. The animal assisted activity took place with a 2.5-year-old Ragdoll cat. The animal has passed the exam (certificate entitling her to take part in felinotherapy) and had 1.5 years of work experience. Due to the different degrees of ID, an individual emotional state survey was conducted among the caregivers of those who were involved in the activity, to assess the impact of animal assisted activity with a cat on patients. A positive effect on the emotional state of people with different types of intellectual disability was observed. Caregivers and nurses of those participating in the study express willingness to continue these types of classes and consider them necessary for this group of people.

Keywords: intellectual disabilities, animal-assisted activity, cat, feline, emotions

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Authors: Faris Algahtani

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The current study aimed to reveal the extent to which evidence-based practices are applied in programs to integrate students with intellectual disabilities from the point of view of their teachers in Yanbu Governorate, and to reveal statistically significant differences in their application of evidence-based practices according to the following variables: gender, educational qualification, experience and training courses. The researcher used the descriptive approach, and accordingly; she designed a questionnaire consisting of 22 phrases applied it to a random sample of (97) teachers of intellectual disability in the integration programs of the Ministry of Education in the government sector in Yanbu Governorate, with (49) male teachers and (48) female teachers. The study showed that teachers of students with intellectual disabilities apply evidence-based practices in programs to integrate students with intellectual disabilities to a large extent. Among the most prominent of these practices came reinforcement in the first place, followed by using visual stimuli/aids, and in the third-place came starting with less complex or challenging skills then moving to more difficult skills. The results also showed no statistically significant differences over the extent of the application attributed to the variables of experience, qualification or training. On the other hand, there were statistically significant differences over the extent of the application attributed to gender in favor of females.

Keywords: evidence-based practices, intellectual disability, inclusion programs, teachers of students with intellectual disabilities

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Authors: Vinay Suhalka

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In India, the official nomenclature used by the State for persons with disability is divyang (literally, the one with a divine limb), a word coming from the Sanskrit language. Disability thus gets portrayed as divine, at least in the welfare sector from where it flows down even to the popular imagination where it gets equated to divinity. This paper looks at reference to persons with disabilities as divyangs and goes on to discusses what such usage for an already marginalized group achieves and misses out. The issue of nomenclature and language has always been a contested one when it comes to disability. At the same time, there is also an issue of who determines these labels for the persons with disability. Nomenclature and language used for disability can have real consequences for the population of persons with disability as it may empower or disempower them. Thus, this paper looks at the issue of what it means for persons with disabilities as ‘exceptionally gifted’ and hence divyang. Language can be a powerful tool to communicate meanings and messages associated with a term. When the persons with disabilities as a group are described as ‘exceptionally gifted, talented and the source of inspiration’, it essentially stereotypes and marginalizes them by putting a burden of performance that all of them ought to be achievers, and it is only then that they would be assimilated in the larger society. This paper also argues that such a situation creates a ‘double bind’ where the person is always trying to match up to the labels (the disabled as ‘achiever, overcomer, inspirational’) created by somebody else and looks at self through the eyes of others. This conceptual paper also presents an overview of disability labels while simultaneously looking at projecting disability as divinity which has the potential to wrongly portray the lives of persons with disability in India due to the official usage of the term. It also explores the question of visibility of disability since the idea of divyang implicitly assumes that all disabilities are visible. In reality, however, it may not be the case simply because all forms of disabilities are not visible, people may choose not to visibilize their disabilities if they can and pass as able-bodied, fearing the stigma that surrounds disability. Finally, it argues for an increased focus on understanding the everyday lived realities of those with disability in order to regard it as an important form of difference which could be a potential resource for the society.

Keywords: persons with disability, labels, language use, divinity

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Authors: Mavis Yaa Konadu Agyemang

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Despite provisions to uphold and safeguard the rights of persons with disability in Ghana, there is evidence that they still encounter several challenges which limit their full and effective involvement in mainstream society, including the gold mining sector. The study sought to explore how persons with physical disability (PWPDs) experience gold mining in the Obuasi Municipal Area. A qualitative research design was used to discover and understand the experiences of PWPDs regarding mining. The purposive sampling technique was used to select five key informants for the study with the age range of (24-52 years) while snowball sampling aided the selection of 16 persons with various forms of physical disability with the age range of (24-60 years). In-depth interviews were used to gather data. The interviews lasted from forty-five minutes to an hour. In relation to the setting, the interviews of thirteen (13) of the participants with disability were done in their houses, two (2) were done on the phone, and one (1) was done in the office. Whereas the interviews of the five (5) key informants were all done in their offices. Data were analyzed using Creswell’s (2009) concept of thematic analysis. The findings suggest that even though land degradation affected everyone in the area, persons with mobility and visual impairment experienced many difficulties trekking the undulating land for long distances in search of arable land. Also, although mining activities are mostly labour-intensive, PWPDs were not employed even in areas where they could work. Further, the cost of items, in general, was high, affecting PWPDs more due to their economic immobility and paying for other sources of water due to land degradation and water pollution. The study also discovered that the peculiar conditions of PWPDs were not factored into compensation payments, and neither were females with physical disability engaged in compensation negotiations. Also, although some of the infrastructure provided by the gold mining companies in the area was physically accessible to some extent, it was not accessible in terms of information delivery. There is a need to educate the public on the effects of mining on PWPDs, their needs as well as disability issues in general. The Minerals and Mining Act (703) should be amended to include provisions that would consider the peculiar needs of PWPDs in compensation payment.

Keywords: mining, resettlement, compensation, environmental, social, disability

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Authors: Anisa Luli, Alessandra Santona

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Wanting a child and experiencing the impossibility to conceive is a painful condition that often is linked to infertility and often leads infertile individuals to experience psychological, relational and social problems. In this situation, infertile couples have to review their choices and take into consideration new ones. Few studies have focused on the decision-making style used by infertile individuals to solve their problem and on the factors that influences it. The aim of this paper is to define the style of decision-making used by infertile persons to give a solution to the “problem” and the predictive role of the attachment, of the representations of the relationship with parents in childhood and of the dyadic adjustment. The total sample is composed by 251 participants, divided in two groups: the experimental group composed by 114 participants, 62 males and 52 females, age between 25 and 59 years, and the control group composed by 137 participants, 65 males and 72 females, age between 22 and 49 years. The battery of instruments comprises: General Decision Making Style (GDMS), Experiences in Close Relationships Questionnaire Revised (ECR-R), Dyadic Adjustment Scale (DAS), Parental Bonding Instrument (PBI) and Symptom Checklist-90-R (SCL-90-R). The results from the analysis of the samples showed a prevalence of the rational decision-making style for both males and females, experimental and control group. There have been founded significant statistical relationships between the attachment scales, the representations of the parenting style, the dyadic adjustment and the decision-making styles. These results contribute to enrich the literature on the subject of decision-making in infertile people and show the relationship between the attachment and decision-making styles, confirming the few results in literature.

Keywords: attachment, decision-making style, infertility, dyadic adjustment

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Authors: Mehena Fedoul

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This paper examines the intersection of race, gender, and disability through a Critical disability race theory and black feminist disability perspective in Keah Brown's memoir, "The Pretty One." The background of the study highlights the significance of intersectionality in understanding the multifaceted experiences of individuals who navigate multiple marginalized identities. The study contributes to the underrepresented field of disability studies from a Critical race and black feminist perspectives, shedding light on the unique challenges and resilience of black disabled women. The study employs a qualitative analysis of Keah Brown's memoir as a primary text. Drawing on intersectionality theory and black feminist disability scholarship, the analysis focuses on how Brown's memoir illuminates the ways in which her race, gender, and disability intersect and shape her lived experiences. The analysis reveals how Brown's memoir challenges traditional notions of disability, beauty, and empowerment through her unapologetic celebration of her blackness, femaleness, and disability. The major findings of the study indicate that Brown's memoir provides a powerful narrative of the complexity, uniqueness and richness of the lived experiences of black disabled women. It demonstrates how the intersectionality of race, gender, and disability shapes Brown's identity, body image, relationships, and societal interactions. The paper also highlights how Brown's memoir emphasizes the importance of inclusivity and intersectionality in understanding and addressing the challenges faced by black disabled women. In conclusion, this study offers a critical analysis of the intersection of race, gender, and disability in Keah Brown's memoir, "The Pretty One," from a black feminist disability perspective. It contributes to the growing body of literature that recognizes the significance of intersectionality in understanding the experiences of marginalized individuals in the disability community. The study underscores the need for more inclusive and intersectional perspectives in disability studies and advocates for greater recognition of the voices and experiences of black disabled women in academic and societal discourse.

Keywords: Intersectionality, black feminism, disability studies, keah brown

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Authors: Shakeela Ahmed, Nabanita Hazarika

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The study aims to understand the effects of dementia on family members. The primary objectives of this research are to identify the main reasons for dementia among the elderly, understand the struggles and stigmas faced by the family members, and understand the effects of dementia on family members. The research employs a qualitative method and utilizes unstructured interviews with family members, counselors and caregivers. A descriptive research design is employed, and thematic analysis is used to analyze the data. A total of 17 family members in the age group of 54-69 years were interviewed, along with 2 counselors and 2 caretakers. In understanding dementia, the researcher has reviewed articles, and the studies revealed diverse meanings, symptoms, stages attached to dementia, and the complex interplay of protective and risk factors for dementia. However, in understanding dementia and its effects on families, there is a lack of studies in relation to the significant effects of dementia on family members and their role as primary caregivers. Therefore, an attempt has been made to understand the effects of dementia on family members, along with ways to improve dementia care for family members. The purpose of the study was to understand the effects and challenges of dementia on family members, the psychosocial reasons for dementia among the elderly, and the various struggles and stigmas faced by the family members of dementia patients. The major findings of the study indicate that people with dementia are cared for by family members at home. Dementia has a significant impact on family members. Family member's quality of life is affected; they experience feelings of anxiety, stress, irritation, frustration, and fear as they watch their loved ones struggle with dementia. They also experience financial strain, as dementia care, medication, and therapy are expensive. Another common impact is the role reversal of family members for their loved ones with dementia. There is a lack of awareness and social understanding about dementia, which leads to family members experiencing stigma and struggles. Caregivers are unable to take care of themselves, and many times, the primary caregiver, a spouse who is elderly, experiences acute stress and a physical inability to meet the demands of being a caregiver. Strategies to improve dementia care are understanding dementia, being patient with the person, showing love and care for the person, avoiding provoking the person, distracting them, offering reassurance, playing their favorite music, talking about things they love, going through old memories, following a structured routine, and remaining calm. The study has made an attempt to provide strategies to manage dementia care, understanding the struggles family members go through, and raising awareness about dementia that will enable further research and investigations.

Keywords: elderly, dementia, stigma, family members

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Authors: Abi Miller, Eleanor Wilson, Claire Diver

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Background: UK Head and Neck Cancer incidence and prevalence were rising related to better treatment outcomes and changed demographics. More people of working-age now survive Head and Neck Cancer. For individuals, work provides income, purpose, and social connection. For society, work increases economic productivity and reduces welfare spending. In the UK, a cancer diagnosis is classed as a disability and more disabled people leave the workplace than non-disabled people. Limited evidence exists on return-to-work after Head and Neck Cancer, with no UK qualitative studies. Head and Neck Cancer survivors appear to return to work less when compared to other cancer survivors. This study aimed to explore the effects of Head and Neck Cancer disability on survivors’ return-to-work experience. Methodologies: This was an exploratory qualitative study using a critical realist approach to carry out semi-structured one-off interviews with Head and Neck Cancer survivors who had returned to work. Interviews were informed by an interview guide and carried out remotely by Microsoft Teams or telephone. Interviews were transcribed verbatim, pseudonyms allocated, and transcripts anonymized. Data were interpreted using Reflexive Thematic Analysis. Findings: Thirteen Head and Neck Cancer survivors aged between 41 -63 years participated in interviews. Three major themes were derived from the data: changed identity and meaning of work after Head and Neck Cancer, challenging and supportive work experiences and impact of healthcare professionals on return-to-work. Participants described visible physical appearance changes, speech and eating challenges, mental health difficulties and psycho-social shifts following Head and Neck Cancer. These factors affected workplace re-integration, ability to carry out work duties, and work relationships. Most participants experienced challenging work experiences, including stigmatizing workplace interactions and poor communication from managers or colleagues, which further affected participant confidence and mental health. Many participants experienced job change or loss, related both to Head and Neck Cancer and living through a pandemic. A minority of participants experienced strategies like phased return, which supported workplace re-integration. All participants, bar one, wanted conversations with healthcare professionals about return-to-work but perceived these conversations as absent. Conclusion: All participants found returning to work after Head and Neck Cancer to be a challenging experience. This appears to be impacted by participant physical, psychological, and functional disability following Head and Neck Cancer, work interaction and work context.

Keywords: disability, experience, head and neck cancer, qualitative, return-to-work

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Authors: Wasim Ahmad, Bir Singh Chavan, Nazli Ahmad

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Objectives: The present investigation is an attempt to find out the efficacy of training the special educators on promoting self-determination among individuals with intellectual disability. Methods: The study equipped the special educators with necessary skills and knowledge to train individuals with the intellectual disability for practicing self-determination. Subjects: Special educators (N=25) were selected for training on self-determination among individuals with intellectual disability. After receiving the training, (N=50) individuals with an intellectual disability were selected and intervened by the trained special educators. Tool: Self-Determination Scale for Adults with Mild Mental Retardation (SDSAMR) developed by Keshwal and Thressiakutty (2010) has been used. It’s a reliable and valid tool used by many researchers. It has 36 items distributed in five domains namely: personal management, community participation, recreation and leisure time, choice making and problem solving. Analysis: The collected data was analyzed using the statistical techniques such as t-test, ANCOVA, and Posthoc Tuckey test. Results: The findings of the study reveal that there is a significant difference at 1% level in the pre and post tests mean scores (t-15.56) of self-determination concepts among the special educators. This indicates that the training enhanced the performance of special educators on the concept of self-determination among individuals with intellectual disability. The study also reveals that the training received on transition planning by the special educators found to be effective because they were able to practice the concept by imparting and training the individuals with intellectual disability to if determined. The results show that there was a significant difference at 1% level in the pre and post tests mean scores (t-16.61) of self-determination among individuals with intellectual disability. Conclusion: To conclude it can be said that the training has a remarkable impact on the performance of the individuals with intellectual disability on self-determination.

Keywords: experiment, individuals with intellectual disability, self-determination, special educators

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Authors: Ayman Hegab

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Dystonia is a neurological motor disorder characterized by involuntary and uncontrollable muscle contractions, tension, twisting, and tremors. The aim of the present study was to analyze the improvement in dystonic contractions in patients with dystonia following the use of a Hegab temporomandibular joint splint (HTS). The Fahn-Marsden Dystonia Movement Scale (DMS) and Disability Scale were used in the current study to evaluate dystonia. An HTS with a thickness ranging from 4 to 6 mm was used to treat the patients enrolled in the study. The final sample comprised 14 patients (10 female and four male) with mean (range) ages of 35.64 (18 to 55) years. Pre-treatment DMS ranged from 6.5 to 57 mean (SD) 18.21 (13.38). At the end of the study, DMS ranged from 0 to 15 mean (SD) 3.14 (3.86). Statistical analysis of the differences between pre-treatment and post-treatment DMS showed a significant decrease in DMS at the end of the treatment period (p = 0.0001). Regarding the disability scale, the pre-treatment disability scale ranged from 7 to 18 mean (SD) 9.46 (3.02). At the end of the study, DMS ranged from 0 to 3 mean (SD) 1.46 (1.13). There was a statistically highly significant decrease in the Disability Scale at the end of the treatment period (p-value 0.0001). This study suggests that the HTS can be considered an effective treatment modality for dystonia, as it significantly decreases both the DMS and the Disability scale.

Keywords: HTS, dystonia, DMS, disability scale

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Authors: Sankalpa Satapathy

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The stigma attached to disability is very high in India and given its patriarchal society women and their interests have always been pushed to the background. The identity of disabled women is compromised under the social construction of disability which lowers their self-esteem and hampers their development. Disability policies in India have focused on provision of educational and employment opportunities to make them economically productive members of the society. This preoccupation with the materialistic spheres of lives of the disabled has led to a neglect of the private sphere concerning intimate social relationships and motherhood. This paper seeks to bring to forefront the private lives of disabled women. Semi-structured in-depth interviews were conducted with twenty seven women with physical disability (congenital/acquired) from Odisha, a state in India. Sampling was done in a manner to include women from various strata of the society to allow meaningful analysis. In a society where paramount importance is attached to wifehood and motherhood, the chances of marriage for disabled women were very low compared to disabled men. Majority believed that marriage and having a family was meant for non disabled women and had decided against getting married. Socialization process was found to be a major factor in determining the ideas and aspirations of disabled women. They were clearly sidelined by their families on the issue of marriage. Education and employment levels did not seem to increase the appeal of disabled women to prospective suitors. But not all the women interviewed were closed to the idea of intimate relationships and marriage. Disabled women who were married or hoped to get married in future were found to have a better body image and greater self motivation. It is interesting to understand the means by which these women, who have been brought up to internalize ideas of their unattractiveness, undesirability, asexuality and inability to care, established identities which have so long been denied to them. With these stories of personal triumphs an attempt is made for reclamation of private spheres which have been abandoned by disability policies and make them gender sensitive.

Keywords: disability, gender, marriage, relationships

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Authors: Supranee Sittikan, Darunee Jongudomkarn, Rutja Phuphaibul

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Thai’s families with disabilities are diverse, poor economy, low education disproportionately characterized their living that includes stress and suffering. This article reports a preliminary study using a qualitative case study with six disabilities (five physical and one mental problem) Their six family caregivers who perceived they were managing well with their conditions as well. Data were collected by in-depth interviews during November-December 2017 in North-East of Thailand. Preliminary results were found factors of moving in comprised of three themes as followings Karma: the families believe that the disability happened because of bad-karma which attached to them. From the reason, the members of families have to deserve and accept it. Family attachment: the families believe in the importance of being the family so they have to take good care in one another whether happy or suffering Community support: the families can get more to received helping hands from local health care providers and community health volunteers. These activities are very important to be representative in taking the families through health accessibility, which help them face with disabling problems. Nevertheless, the study needs further exploring on other families’ and health care team's perspective in larger scales leading to develop an appropriate health care service system which can support and promote the well-being of the families living with disabilities in the future.

Keywords: families with disabilities, Karma, family attachment, community support

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Authors: Shahadut Hossain

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Measurement errors in continuous covariates and/or misclassifications in categorical covariates are common in epidemiological studies. Regression analysis ignoring such mismeasurements seriously biases the estimated main and interaction effects of covariates on the outcome of interest. Thus, adjustments for such mismeasurements are necessary. In this research, we propose a Bayesian parametric framework for eliminating deleterious impacts of covariate mismeasurements in logistic regression. The proposed adjustment method is unified and thus can be applied to any generalized linear and non-linear regression models. Furthermore, adjustment for covariate mismeasurements requires validation data usually in the form of either gold standard measurements or replicates of the mismeasured covariates on a subset of the study population. Initial investigation shows that adequacy of such adjustment depends on the sizes of main and validation samples, especially when prevalences of the categorical covariates are low. Thus, we investigate the impact of main and validation sample sizes on the adjusted estimates, and provide a general guideline about these sample sizes based on simulation studies.

Keywords: measurement errors, misclassification, mismeasurement, validation sample, Bayesian adjustment

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Authors: Luciana Steffen

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People with disabilities are often neglected in the exercise of their sexuality, facing several prejudices and discrimination in this area. For women with disabilities, the negligence is even major. Studies that relate sexual and reproductive rights with the experience of women with disabilities are rare, and in the field of Theology, practically nonexistent in Brazil. The aim of this work is to reflect on the relationship between women with disabilities, sexual and reproductive rights and Theology, according to a feminist perspective. The work is a literature review and involves the areas of Gender Studies, Disability Studies, Feminist Studies and Theology. In the article it will be addressed the relations between disability, sexual and reproductive rights, feminism, as well as the relations with the area of Theology, reflecting on these themes toward a fairer and more inclusive understanding of feminism, sexuality and women with disabilities. To reflect on sexual and reproductive rights of women with disabilities, it is important to reflect on religious concepts about the body, sexuality, reproduction and gender roles, because they are all connected. So, a critical analysis of traditional theological values taking into consideration the dimensions of sexuality and women with disability is important for a more liberating and inclusive understand about sexual and reproductive rights of women with disabilities. Theology should help the other areas in the understanding that all people have the right to live their lives with completeness, dignity and respect, so women with disabilities must have the opportunity of making their own choices on the fields of sexuality and reproduction.

Keywords: gender, disability, sexual and reproductive rights, theology

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Authors: Ruswiati Suryasaputra, Linda Salim

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This concept paper, initially a proposal for the completion of the degree of Doctor of Philosophy, is seeking to gain more understanding of family business succession in order to extend the average lifespan of family business that has shrunken significantly for the past 20 years. While multitude studies have been done in family business succession, the average lifespan of a family business continues to decline sharply over the past two decades to only 24 years, or 1.5 generations, in 2010, from 50-60 years, equivalent to 3 generations, as recently as 1990. While the qualitative approach of this study will not churn a theoretical framework unique to the family business field, it will bring to the surface important issues during a family business succession process that have been hidden behind the mostly profit-making issues that have been the main highlight of the family business field.

Keywords: family business, succession, nepotism, family studies

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Authors: Katharina Crepaz

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Both minority rights and disability rights are relatively new fields for policy-making in a European context, and both are affected by the EU’s diversity mainstreaming approach, as well as by the non-discrimination legislation drafted at the European level. These processes correspond to the classic understanding of Europeanization, namely a “top-down” stream of influence from the European to the national and subnational levels. However, both minority and disability rights movements also show instances of “bottom-up” Europeanization, e.g. transnational advocacy networks and efforts to reach joint goals at the EU-level. This paper aims to provide a comparative perspective on Europeanization in both fields, pointing out similar dynamics and patterns, but also explaining in which sectors outcomes may be different and which domestic and other scope conditions may be responsible for these differences.

Keywords: europeanization, disability rights, minority rights, comparative perspective

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Authors: Ting-I Lin

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Objective: This article explores the nursing care experience of a 51-year-old terminal lung cancer patient admitted to the intensive care unit (ICU) following an upper right lobectomy. The patient initially sought emergency treatment due to worsening cough and dyspnea, which led to the placement of an endotracheal tube following sudden deterioration. Subsequent CT scans and chest X-rays revealed a tumor in the upper right lung with metastases to the lungs, liver, bones, and adrenal glands. The patient underwent a right upper lobectomy and a wedge resection of the right middle lobe. Pathology staging: T4N3M1c and the patient was diagnosed with advanced cancer postoperatively. Method: During the care period, nursing staff continuously monitored the patient’s physiological data through observations, direct care, interviews, physical assessments, and review of the patient’s medical records. The nursing team collaborated with the critical care team and the palliative care team, using Gordon's Eleven Functional Health Patterns to conduct a comprehensive assessment. The key health problems identified included pain related to postoperative cancer resection and invasive devices, fear of death due to rapid disease progression, and altered tissue perfusion associated with hemodynamic instability. Results: Postoperatively, the patient experienced pain from the surgical wound and dyspnea due to extensive metastasis, often leading to confusion. Through the adjustment of pain medication, the patient’s discomfort was alleviated, using Morphine 8 mg in 0.9% normal saline 60 ml IV drip q6h prn, and Ultracet 37.5 mg/325 mg 1# PO q6h. Additionally, lavender essential oil inhalation and limb massage were provided for 15 minutes four times a day. The patient’s FLACC pain score decreased from 7 to below 3. After respiratory training, the endotracheal tube was successfully removed, and the patient was weaned off the ventilator. Triflow exercises were used to promote alveolar expansion, with the goal of achieving 2 balls for 10 seconds, 5 repetitions per session, 6-8 times a day. The patient’s breathing stabilized at 16-18 breaths per minute, body temperature remained between 35.8°C and 36.1°C, and the mean arterial pressure was maintained between 60-80 mmHg. Conclusion: The critical care team and the palliative care team held a family meeting to discuss not only the patient’s care but also the emotional well-being of the family. Visiting hours were increased to two times per day, one hour each time, allowing the patient and family to express love and gratitude, which strengthened their emotional connection and reduced the patient’s anxiety from severe to mild. The family expressed that they had no regrets. After the patient was transferred to the general ward, the nursing team continued to provide end-of-life care with genuine empathy, compassion, and religious support, helping both the patient and family through the final stage of life.

Keywords: multiple metastases, lung cancer, palliative care, nursing experience

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