Self-determination, emotions and exclusion in a blog of deaf people: a qualitative perspective

ABSTRACT Objective: to explore the deaf people’s perceptions about their well-being, published on a weblog. Method: A free access spanish blog that’s been created and used by deaf people is selected. Under qualitative methodology with a phenomenological approach, through the non-participating and asynchronous observation, sign language speeches are analyzed in 44 video messages uploaded by deaf bloggers. Results: in the speeches analyzed, inclusion’s areas cited the most are self-determination, social inclusion and emotional well-being, these latter two in a negative way: social exclusion and emotional distress. Final considerations: The study participants state that the arrangements adopted for their inclusion are not enough, with feelings of discomfort prevailing in all areas and life stages. Solidarity initiatives, elimination of communication barriers and true transforming agents of our society are needed.

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Evaluating Quality of Life in Families With Williams Syndrome Patients

10.21203/rs.3.rs-50757/v1 ◽

2020 ◽

Author(s):

ESTHER MORALEDA ◽

Mario Arana ◽

Patricia López

Keyword(s):

Quality Of Life ◽

Intellectual Disability ◽

Williams Syndrome ◽

Personal Development ◽

Social Inclusion ◽

Interpersonal Relations ◽

Well Being ◽

Self Determination ◽

The Impact

Abstract Background: Williams Syndrome is a developmental disorder characterized by a variable intellectual disability. People with Williams Syndrome need the intervention of several clinical and educational specialists throughout their life. However, little is known about the impact produced by this disability in their immediate environment, especially in families. The purpose was to know the level of quality of life described by families with Williams Syndrome.Methods: The sample was made up of 33 families belong to Spanish Williams Syndrome Association who were evaluated using the Kidslife Scale. Theirs children and adolescents were between 4 and 20 years old. Eight main quality of life dimensions were evaluated: emotional well-being, physical well-being, material well-being, personal development, interpersonal relations, social inclusion, self-determination and rightsResults: The obtained data indicated that the degree and presence of intellectual disability themselves did not homogeneously influence people’s quality of life, but many variables could alter their quality of life to a greater or lesser extent. There are no significant differences between quality of life areas but significant differences appeared for level of dependence in the self-determination subarea (p<.05). Conclusions: These results led us to analyse the social and emotional implications for families and their environment.

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Evaluating quality of life in families with Williams Syndrome patients

Health and Quality of Life Outcomes ◽

10.1186/s12955-021-01704-0 ◽

2021 ◽

Vol 19 (1) ◽

Author(s):

Esther Moraleda Sepúlveda ◽

Patricia López Resa

Keyword(s):

Quality Of Life ◽

Intellectual Disability ◽

Williams Syndrome ◽

Personal Development ◽

Social Inclusion ◽

Interpersonal Relations ◽

Well Being ◽

Self Determination ◽

The Impact

Abstract Background Williams Syndrome is a developmental disorder characterized by a variable intellectual disability. People with Williams Syndrome need the intervention of several clinical and educational specialists throughout their life. However, little is known about the impact produced by this disability in their immediate environment, especially in families. The purpose was to know the level of quality of life described by families with Williams Syndrome. Methods The sample was made up of 33 families belong to Spanish Williams Syndrome Association who were evaluated using the Kidslife Scale. Their children and adolescents were between 4 and 20 years old. Eight main quality of life domains were evaluated: emotional well-being, physical well-being, material well-being, personal development, interpersonal relations, social inclusion, self-determination and rights Results The obtained data indicated that the degree and presence of intellectual disability did not homogeneously influence people’s quality of life, but many variables could alter their quality of life to a greater or lesser extent. There are no significant differences between quality of life areas but significant differences appeared for level of dependence in the self-determination subarea (p < .05). Conclusions These results led us to analyse the social and emotional implications for families and their environment.

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EVALUATING QUALITY OF LIFE IN FAMILIES WITH WILLIAMS SYNDROME PATIENTS

10.21203/rs.3.rs-50757/v3 ◽

2021 ◽

Author(s):

Esther Moraleda Sepúlveda ◽

Mario Arana-Zumaquero ◽

Patricia López-Resa

Keyword(s):

Quality Of Life ◽

Intellectual Disability ◽

Williams Syndrome ◽

Personal Development ◽

Social Inclusion ◽

Interpersonal Relations ◽

Well Being ◽

Self Determination ◽

The Impact

Abstract Background: Williams Syndrome is a developmental disorder characterized by a variable intellectual disability. People with Williams Syndrome need the intervention of several clinical and educational specialists throughout their life. However, little is known about the impact produced by this disability in their immediate environment, especially in families. The purpose was to know the level of quality of life described by families with Williams Syndrome. Methods: The sample was made up of 33 families belong to Spanish Williams Syndrome Association who were evaluated using the Kidslife Scale. Their children and adolescents were between 4 and 20 years old. Eight main quality of life domains were evaluated: emotional well-being, physical well-being, material well-being, personal development, interpersonal relations, social inclusion, self-determination and rightsResults: The obtained data indicated that the degree and presence of intellectual disability did not homogeneously influence people’s quality of life, but many variables could alter their quality of life to a greater or lesser extent. There are no significant differences between quality of life areas but significant differences appeared for level of dependence in the self-determination subarea (p<.05). Conclusions: These results led us to analyse the social and emotional implications for families and their environment.

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Intergenerational Friendship as a Conduit for Social Inclusion? Insights from the “Book‐Ends”

Social Inclusion ◽

10.17645/si.v9i4.4555 ◽

2021 ◽

Vol 9 (4) ◽

pp. 304-314 ◽

Cited By ~ 1

Author(s):

Riikka Korkiamäki ◽

Catherine Elliott O'Dare

Keyword(s):

Social Inclusion ◽

Qualitative Methodology ◽

Well Being ◽

Chronological Age ◽

Policy Makers ◽

Research Attention ◽

The Everyday ◽

Societal Level ◽

Alternative Identities ◽

The Life Course

Friendship is said to promote psychological and physical well‐being and increase social inclusion. Yet, intergenerational friendship has garnered little research attention due to the assumed dominance of age homophily in friendship. In this article we explore intergenerational friendship from the perspective of “younger” and “older” friends at the “generational book‐ends” of the life course. We focus on the role that intergenerational friendship plays in processes of social inclusion in the everyday lives of the participants, bringing together a study conducted in Finland and one in Ireland. Both studies employ qualitative methodology, drawing from interviews with 31 young people who were refugees (aged 13–18) in Finland and 23 older people (aged 65+) in Ireland. Our findings reveal that the younger and the older participants concur on the qualities and benefits of intergenerational friendship. Additionally, while age is not a uniform definer of friendships, differences in chronological age are not meaningless but support caring, enjoyment, and inclusion in alternative ways compared to peer‐aged friendships. Access to diverse company, distinct support, broader networks, and alternative identities lead to increased experiences of social inclusion at a personal and societal level. We conclude by calling on policy makers and communities to create spaces and opportunities for inclusion through friendship for all generations.

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Evaluating Quality Of Life In Families With Williams Syndrome Patients

10.21203/rs.3.rs-50757/v2 ◽

2020 ◽

Author(s):

Esther Moraleda-Sepúlveda ◽

Mario Arana-Zumaquero ◽

Patricia López-Resa

Keyword(s):

Quality Of Life ◽

Intellectual Disability ◽

Williams Syndrome ◽

Personal Development ◽

Social Inclusion ◽

Interpersonal Relations ◽

Well Being ◽

Self Determination ◽

The Impact

Abstract Background: Williams Syndrome is a developmental disorder characterized by a variable intellectual disability. People with Williams Syndrome need the intervention of several clinical and educational specialists throughout their life. However, little is known about the impact produced by this disability in their immediate environment, especially in families. The purpose was to know the level of quality of life described by families with Williams Syndrome. Methods: The sample was made up of 33 families belong to Spanish Williams Syndrome Association who were evaluated using the Kidslife Scale. Their children and adolescents were between 4 and 20 years old. Eight main quality of life domains were evaluated: emotional well-being, physical well-being, material well-being, personal development, interpersonal relations, social inclusion, self-determination and rightsResults: The obtained data indicated that the degree and presence of intellectual disability did not homogeneously influence people’s quality of life, but many variables could alter their quality of life to a greater or lesser extent. There are no significant differences between quality of life areas but significant differences appeared for level of dependence in the self-determination subarea (p<.05). Conclusions: These results led us to analyse the social and emotional implications for families and their environment.

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Perceptions of parents of under-5-year-old children with pneumonia on the effects of tobacco smoke: a phenomenology study in Manggarai, Eastern Indonesia

Journal of Public Health Research ◽

10.4081/jphr.2021.2409 ◽

2021 ◽

Vol 10 (s1) ◽

Author(s):

Paskaliana Hilpriska Danal ◽

Nani Nurhaeni ◽

Nur Agustini

Keyword(s):

Tobacco Smoke ◽

Well Being ◽

Phenomenological Approach ◽

Shortness Of Breath ◽

Eastern Indonesia ◽

Nursing Communication ◽

The Family ◽

Study Participants ◽

Depth Interviews ◽

Economic Well Being

Background: In Eastern Indonesia, the incidence of pneumonia in under-5-year-old children is mostly predicted by environmental factors, such as exposure to household smoke and tobacco smoke. Sociocultural ideas shape the perception of parents on the effect of tobacco smoke thus influence their behaviour on reducing the smoke exposure on their child. The present study aimed to explore the perceptions of parents of under-5-year-old children with pneumonia about the effects of exposure to tobacco smoke.Design and Methods: This qualitative study was conducted using a phenomenological approach. The study participants were 11 parents of under-5-year-old children with pneumonia in Manggarai, Eastern Indonesia. The data were collected through in-depth interviews and then analyzed using the Colaizzi method.Results: The themes identified in the present study were i) “I know the risk of smoke, I can’t help it” various perceptions on tobacco smoke effect; ii) tobacco causes shortness of breath on under-5-year-old children; and iii) tobacco smoke taking tolls on family’s health and economy.Conclusions: The findings revealed that parent view tobacco smoke endanger children’s health and hamper the socio-economic well-being of the family. It is necessary to improve parent’s awareness about the effects of tobacco smoke through effective nursing communication that suits the family’s needs and conditions.

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