THE EXPERIENCES OF CHILDREN WITH DISABILITIES AND PRIMARY CAREGIVERS ON THE SOCIAL INCLUSION OF CHILDREN WITH DISABILITIES IN ETHIOPIA

2018 ◽  
Vol 9 (4) ◽  
pp. 146-167
Author(s):  
Belaynesh Tefera ◽  
Alice Schippers ◽  
Marloes Van Engen ◽  
Jack Van der Klink
Keyword(s):  
Quality Of Life ◽  
Social Inclusion ◽  
Children With Disabilities ◽  
Addis Ababa ◽  
Primary Caregivers ◽  
Family Quality Of Life ◽  
Group Discussions ◽  
The Social ◽  
The Capability Approach

This article presents the findings of a qualitative study on the social inclusion of children with disabilities in Addis Ababa, Ethiopia and how this affects their achievement of valued life goals. The study is based on focus group discussions with children with disabilities and primary caregivers of such children. The thematic analysis is based on family quality of life and the capability approach, which are used to explain the effects of social inclusion (and exclusion) on children with disabilities and their families in three areas of quality of life: being, belonging, and becoming. The study also looked at how the social inclusion of children with disabilities can be actualised. The results of the study confirm the existence of considerable challenges to the social inclusion of children with disabilities in Addis Ababa, which is reflected in their capabilities. The results suggest that children with disabilities need assistance and support to achieve a good quality of life. They also indicate the need for the involvement of the wider community to support children with disabilities and their families to enhance the capability of such children, and so improve their family quality of life.

scholarly journals Co-Design of Social Impact Domains with the Huntington’s Disease Community

Disabilities ◽  
2021 ◽  
Vol 1 (2) ◽  
pp. 116-131
Author(s):  
Natasha Layton ◽  
Natasha Brusco ◽  
Tammy Gardner ◽  
Libby Callaway
Keyword(s):  
Quality Of Life ◽  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Design Process ◽  
Social Life ◽  
Social Inclusion ◽  
Social Impact ◽  
Service Providers ◽  
The Social

Background: For people living with or affected by Huntington’s Disease (HD) to experience a good quality of life, tailored support is required to meet physical, cognitive-behavioral, psychological, and social support needs. Substantial service and knowledge gaps regarding HD exist across support providers and service systems. Measuring unmet needs and what quality of life looks like is a fundamental step required to determine the social impact of service investment and provision. The objectives of this study were to validate and map a draft set of HD Social Impact Domains (HD-SID) against existing national and international outcome frameworks; and evaluate and finalize the HD-SID set using a co-design approach with people with lived experience of, and expertise in, HD. Methods: This research used a qualitative co-design process, with 39 participants across four stakeholder groups (people who were HD gene-positive, gene-negative family members, academics, peak organizations, and service providers) to: (i) map and verify the social life areas impacted by HD; (ii) undertake a rigorous three-phased, qualitative process to critically evaluate the draft HD-SID; and (iii) seek feedback on and endorsement of the HD-SID through this co-design process, with a final set of HD-SID identified. Results: Endorsed HD-SID comprised risks and safety (including housing stability, and economic sustainability) and social inclusion (including health and symptom management, physical wellbeing, emotional wellbeing, and building resilient relationships). Conclusions: Effective measurement of the impacts and outcomes for people with HD is informed by both extant measures and an understanding of the specific population needs. This qualitative co-design research demonstrates that HD-SID resonate with the HD community.

SOCIAL INCLUSION, QUALITY OF LIFE, AND CHILDREN WITH DISABILITIES

2017 ◽  
Vol 3 (37) ◽  
pp. 5-14
Author(s):  
Ivan Brown
Keyword(s):  
Quality Of Life ◽  
Social Inclusion ◽  
Children With Disabilities ◽  
Individual Assessment ◽  
The Way

In the article there was discussed the term of social inclusion and the quality of life of children with disabilities. There was presented the way to social inclusion in the context of the achieved quality of life and also the main categories for individual assessment of the quality of life. In this article there are also presented four ways to improve social inclusion for children with disabilities.

scholarly journals Quality of Life, Needs and Fears of Mothers of Children with Disabilities in Saudi Arabia during the COVID-19 Lockdown

2021 ◽  
Vol 18 (21) ◽  
pp. 11442
Author(s):  
Nisreen Al Awaji ◽  
Monira Aldhahi ◽  
Shahnaz Akil ◽  
Salwa Awad ◽  
Eman Mortada
Keyword(s):  
Quality Of Life ◽  
Saudi Arabia ◽  
Children With Disabilities ◽  
Well Being ◽  
Cross Sectional Study ◽  
Online Questionnaire ◽  
Cross Sectional ◽  
Raising Children ◽  
The Social

Substantial changes in life dynamics resulting from the outbreak of the coronavirus disease 2019 (COVID-19) could have an impact on the quality of life (QoL) of mothers of children with and without disabilities. This study compared the quality of life (QoL) of mothers of children with disabilities (MCD) to the QoL of mothers of children without disabilities (CON) in Saudi Arabia during COVID-19 lockdown. It explored mothers’ concerns and the type of support they need during the quarantine. A comparative cross-sectional study was conducted during the lockdown. An online questionnaire was distributed to mothers raising children with and without disabilities in Saudi Arabia. A total of 340 mothers participated in the study by completing the survey: 93 MCD and 247 CON. The QoL of MCD and CON was assessed using the WHOQOL-BREF questionnaire. Furthermore, detailed information was provided by the mothers regarding their needs and concerns during the lockdown. The results of the study revealed that the overall QoL was significantly higher in the CON group, compared to the MCD group, during the COVID-19 lockdown. The social well-being and environmental well-being reported by MCD were significantly lower on the total scale of the WHOQOL-BREF than those reported by the CON group. The comparison between the two groups revealed significant differences in the support required by mothers during the COVID-19 pandemic: a higher percentage of MCD needed emotional and psychological support, especially from family members. The major concerns reported by MCD were the deterioration of their children’s medical conditions and the lack of medical supplies during the lockdown.

scholarly journals Factors associated with quality of life in elderly undertaking literacy programs

2014 ◽  
Vol 8 (2) ◽  
pp. 169-174 ◽  
Author(s):  
Bruna Rodrigues dos Santos ◽  
Sofia Cristina Iost Pavarini ◽  
Allan Gustavo Brigola ◽  
Fabiana de Souza Orlandi ◽  
Keika Inouye
Keyword(s):  
Quality Of Life ◽  
Social Inclusion ◽  
Geriatric Depression Scale ◽  
Depression Scale ◽  
Sociodemographic Factors ◽  
Literacy Programs ◽  
Cognitive Symptoms ◽  
The Social ◽  
Proportional Relationship

ABSTRACT Increased life expectancy has led to a significant number of elderly enrolling on Youth and Adult Education programs (YAE). These individuals leave inactivity and negative aspects of aging in search of opportunities for social inclusion. Objective: To evaluate the influence of sociodemographic factors and depressive and cognitive symptoms on quality of life (QL) of elderly attending the YAE of São Carlos city in São Paulo state. Methods: A descriptive and quantitative study approved by the Research Ethics Committee of São Carlos Federal University was conducted. The sample comprised all elderly undertaking the YAE literacy program in 2012. The instruments used were the Mini-Mental State Examination (MMSE), Geriatric Depression Scale (GDS), WHOQOL-bref and WHOQOL-old, and a sociodemographic instrument. Results: We interviewed 23 elderly, predominantly females (91.3%) in the early stages of old age (69.6%). The number of years of YAE study showed no correlation with cognition scores obtained on the MMSE or with QL domains. However, scores on the GDS had a moderate inverse relationship with total scores for the Physical (p<0.01), Sensory Functioning (p<0.05), Independence (p<0.01), Past, Present and Future Activities (p<0.05), Social Participation (p<0.01), and Intimacy (p<0.05) QV domains, and a strong inversely proportional relationship with the Social Relationships QV domain (p<0.01). Scores attained on the MMSE showed a moderate and direct relationship with total scores on the Independence QL domain (p=0.001). Conclusion: Elderly on literacy programs have average quality of life scores. Several QL domains are influenced by depression and cognitive symptoms.

scholarly journals FAMILY QUALITY OF LIFE AND THE BUILDING OF SOCIAL CONNECTIONS: PRACTICAL SUGGESTIONS FOR PRACTICE AND POLICY

2018 ◽  
Vol 9 (4) ◽  
pp. 88-106
Author(s):  
Meaghan Edwards ◽  
Trevor Parmenter ◽  
Patricia O'Brien ◽  
Roy Brown
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Social Connections ◽  
Family Quality Of Life ◽  
Community Inclusion ◽  
Migrant Families ◽  
The Social ◽  
Low Levels ◽  
Personal Community

Family quality of life literature suggests that families with a member with an intellectual/developmental disability frequently face major difficulties in building social connections with others. They experience low levels of social support, face challenges in community inclusion, and are at risk of social isolation. These challenges may also be faced by other types of marginalized families. Families experiencing serious illness, families experiencing intrafamily violence, and migrant families or those seeking political asylum, for example, may also become isolated and find themselves without pathways to connections with others. We present practical suggestions intended for families and professionals interested in action and intervention at the personal, community, program, and policy levels to encourage the growth of social connections and prevent isolation of families experiencing social exclusion. The suggestions will come from families with a member with a disability and the findings of a study examining the social support of families as it relates to quality of life.

scholarly journals Availability of social services for families with disabled children in the context of the welfare state

2021 ◽  
Vol 44 (2) ◽  
pp. 34-48
Author(s):  
Agota Giedrė Raišienė ◽  
Laura Gardziulevičienė
Keyword(s):  
Welfare State ◽  
Social Services ◽  
Social Inclusion ◽  
Children With Disabilities ◽  
Well Being ◽  
Disabled Children ◽  
The Social ◽  
The Disabled ◽  
The Welfare State

The phenomenon of the welfare state is characterized by complexity of indicators. To determine in which areas the country is closer to the welfare state, various areas of social policy are analysed. In this article, we set out to investigate one of them, i.e., the accessibility of social services for children with disabilities. The European Union ensures the basic preconditions for the well-being of children with disabilities and emphasizes the compatibility of health, social and educational services (European Commission, 2021). In addition, Member States are free to introduce specific measures for social inclusion (COM, 2021). The well-being of children with disabilities is inseparable from that of adults, usually the family in which the children live. Depending on the child’s disability, the family has to devote time to the child’s special needs, so opportunities to function in society, such as working and earning an income, become dependent on the social assistance received for the disabled child. Research shows that participation in labour market processes reduces the social exclusion of families with children with disabilities and improves quality of life indicators in general (Stefanidis & Strogilos 2020). However, analysis of good practice is more common, while information about the lack of services that parents face difficulties remains overboard. Thus, our research contributes to a better understanding of how families raising children with disabilities use state-provided social services and what solutions and measures are needed to improve the quality of life of children with disabilities and their relatives. The practical implications of our article are revealed through the possibility of more confidently shaping the decisions and measures of the welfare state.The article presents results of a survey of 68 families with disabled children. Our research was conducted in Druskininkai municipality which has typical infrastructure of social services for the disabled and their families in Lithuania.Our study has shown that social services in Lithuania poorly meet needs of families with disabled children. Though social inclusion is one of the most important features of the welfare state, the provision of social services to disabled and their families goes beyond the concept in Druskininkai municipality at least. Families have little information about social guarantees and support provided by the state and municipality. The families are limited to services reported by health care and education institutions. Moreover, the most significant problem hindering social integration of disabled and their families is a small portion of disabled children using services of day care centre. As a result, children suffer at risk of social exclusion while disabled children’s parents lack of opportunities to fully participate in the labour market.Based on the results of the study we state that increasing the availability of social services that meet the needs of families with disabled children is a necessary social policy solution, without which the development of a welfare state in Lithuania is hardly possible.

Family quality of life for families of children with disabilities in African contexts: a scoping review

2021 ◽  
Author(s):  
Julia Jansen-van Vuuren ◽  
Reshma Parvin Nuri ◽  
Ansha Nega ◽  
Beata Batorowicz ◽  
Rosemary Lysaght ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Scoping Review ◽  
Children With Disabilities ◽  
Family Quality Of Life

Opportunities for participation, inclusion and recreation in school-aged children with disability influences parent occupations and family quality of life: A mixed-methods study

2019 ◽  
Vol 83 (4) ◽  
pp. 204-214
Author(s):  
Anoo Bhopti ◽  
Ted Brown ◽  
Primrose Lentin
Keyword(s):  
Quality Of Life ◽  
Mixed Methods ◽  
Children With Disabilities ◽  
Qualitative Interviews ◽  
Family Quality Of Life ◽  
School Aged Children ◽  
Aged Child ◽  
Services And Supports

Introduction Parents of children with disabilities experience long-term loss of occupations and increased caregiving responsibilities, which affect their individual and family quality of life. There is limited knowledge about the factors that influence the family quality of life of families when their child with disability is at school. This study examined the relationships between family quality of life, disability-related supports provided and parental occupations, and identified factors influencing family quality of life. Method A mixed-methods approach was utilised using the Beach Center Family Quality of Life Survey, a demographic questionnaire ( n = 50) and 12 qualitative interviews. Descriptive analyses and Spearman’s Rho correlations were conducted. Both sets of data were analysed and triangulated. Findings Participants reported high satisfaction with their family quality of life, with strong associations between parental occupations and family quality of life. Four qualitative themes highlighted that their family quality of life was hard, challenging and fluctuating; however, there were positives about having a child with disability, and receiving services and supports (formal and informal) for their child with disability helped family quality of life. In spite of this, caregiving was long-term and impacted their everyday occupations, challenging their family quality of life. Conclusion This study concludes that even though parents of a school-aged child with disability are happy to adopt the caregiver role and appreciate the positives of having a child with disability, lack of support within the mainstream schooling system and prolonged caregiving has a detrimental impact on the parents’ occupations, their health and wellbeing, and consequently on their family quality of life. Inadequate opportunities for recreation and lack of resources to manage persistent behaviours of concern highlight unequal participation opportunities for school-aged children with disabilities.

scholarly journals Percepções de atletas paralímpicos sobre a inclusão social por meio do esporte (Paralympic athletes perceptions about social inclusion through sport)

Retos ◽  
2021 ◽  
Vol 42 ◽  
pp. 655-661
Author(s):  
Bruna Solera ◽  
Patrick Paludett Flores ◽  
Ana Luiza Barbosa Anversa ◽  
Yedda Maria Da Silva Caraçato ◽  
Vânia de Fátima Matias De Souza ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Content Analysis ◽  
Social Inclusion ◽  
Wheelchair Basketball ◽  
Calidad De Vida ◽  
The People ◽  
The Social ◽  
Paralympic Sport ◽  
The City

 A presente pesquisa objetivou analisar a percepção dos atletas de esporte paralímpico acerca da influência da prática esportiva para a inclusão social. Para isso, contou-se com a participação de 19 atletas das modalidades Bocha, Basquete em Cadeira de Rodas e Vôlei Sentado da cidade de Maringá-PR/Brasil. Como instrumento de pesquisa, optou-se pela entrevista não estruturada. Os dados coletados foram analisados com base nos pressupostos da análise de conteúdo e organizados com auxílio do software NVivo. Evidenciou-se que o esporte e seus desdobramentos, a partir da visão dos atletas paralímpicos, contribui significativamente com a qualidade de vida e convívio social entre os pares, o que pode gerar alguns indicativos para o processo de inclusão social. Nesse sentido, conclui-se que o envolvimento com o esporte paralímpico não contribui diretamente com a inclusão social dos sujeitos, uma vez que as relações interpessoais em sua maioria ainda permanecem restritas as pessoas com deficiência, porém, destaca-se que tal ação possibilita ganhos pessoais ímpares para a vida dos atletas.  Abstract: The research aimed to analyze the perception of Paralympic sport athletes about the influence of sports practice for social inclusion. For this, 19 athletes from Bocce, Wheelchair Basketball and Sitting Volleyball from the city of Maringá-PR participated. As a research instrument, opted for the unstructured interview, with the data collected and analyzed based on the assumptions of the content analysis and organized with the aid of the N Vivo software. It was Evidenced that the sport and its unfolding contribute to the quality of life and inclusion of the people involved, however, the inclusion is carried out in certain spaces and among people with disabilities. It is concluded with this, that the involvement with the Paralympic sport does not contribute to the social inclusion of the subjects, even contributing to gains for the athletes' lives.  Resumen: El estudio tuvo como obje the Paralympic sport does not contribute to the social inclusion otivo analizar la percepción de las personas con discapacidad involucradas en el deporte paralímpico sobre la influencia del deporte para la inclusión social. Para ello participaron 19 deportistas de Bochas, Baloncesto en Silla de Ruedas y Voleibol Sentado de la ciudad de Maringá-PR. Como instrumento de investigación se optó por la entrevista no estructurada, con los datos recolectados y analizados en base a los supuestos del análisis de contenido y organizados con la ayuda del software N Vivo. Se hizo evidente que el deporte y sus consecuencias contribuyen a la calidad de vida e inclusión de las personas involucradas, sin embargo, la inclusión se realiza en determinados espacios y entre personas con discapacidad. Se concluye con esto, que la implicación con el deporte Paralímpico no contribuye a la inclusión social de los sujetos, contribuyendo incluso a ganancias para la vida de los deportistas.

Sign in / Sign up

Export Citation Format

Share Document