Review: The development of family quality of life concepts and measures

Samuel, Preethy S.; Rillotta, Fiona; Brown, Ivan

doi:10.1111/j.1365-2788.2011.01486.x

Cited by 133 publications

(136 citation statements)

References 70 publications

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“…Moreover, in families with a child with disabilities involving autism spectrum disorder, the contribution of (in)formal support was seen as even more necessary. This is an important finding, as it further informs policy and practice world wide, because it is consistent with previous international studies (Brown, 2012).…”

supporting

confidence: 88%

“…The focus on the family in QOL research in the disability field can be seen as an increasing blend of different backgrounds and approaches including ecological and systems approaches as well as developmental work in psychology (e.g., positive psychology). In studying individual QOL, the importance of the family and the broader network of community (particulary friends and neighbours) are critical as seen in the innovative research of the Turnbulls (Turnbull, Brown, & Turnbull, 2004), where FQOL was viewed as a multidimensional social construct (Samuel, Rillotta, & Brown, 2012).…”

mentioning

confidence: 99%

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Editorial for Special Issue on Quality of Life: Exploring New Grounds

Schippers¹,

Hove

2017

Policy Practice Intel Disabi

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supporting

confidence: 88%

mentioning

confidence: 99%

Editorial for Special Issue on Quality of Life: Exploring New Grounds

Schippers¹,

Hove

2017

Policy Practice Intel Disabi

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“…The FQL, of holistic scope, is a theme that has not been very studied, yet, owing to its complexity, especially in the attempt of comprehending the dynamics and subjectivity of each family (16) . Because family is essential in the process of hearing rehabilitation, it is extremely important our deepening in this theme through the use of an instrument that provide us a basis to where we should follow after our reception.…”

Section: Discussionmentioning

confidence: 99%

Adaptação Cultural da Escala de Qualidade de Vida Familiar (Family Quality of Life Scale) para o Português Brasileiro

Jorge¹,

Levy²,

Granato³

2015

CoDAS

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Purpose: To culturally adapt the Family Quality of Life Scale to the Brazilian Portuguese version and evaluate the instrument reliability and family quality of life of those who have children with hearing loss. Methods:The process of cultural adaptation of the scale followed the steps of the Guidelines for the Process of Cross-Cultural Adaptation of Self-Report Measure. It was conducted in three stages: translation, back translation, and application in a pilot sample, as a way to check the comprehension difficulties of the items. After it had been completed, it was administered to 41 families who have children with hearing loss and, with their results, the quality of life and reliability were analyzed based on the Cronbach's alpha statistical test. Results:In the first version (translation), among the 25 items, there were differences between the translators only in four items; after the corrections, the second version was done (back translation), in which other four more differences were found. Finally, after the final corrections, the last version was developed and used in the pilot sample without differences. Thus, it was applied to families with deaf children, who believe to be satisfied as to their quality of life. The Cronbach's alpha test found that the scale shows a satisfactory reliability. Self-Report Measure. Realizada em três momentos: tradução, retrotradução e aplicação na amostra piloto como forma de verificar dificuldades de compreensão dos itens. Quando finalizada foi aplicada em 41 famílias que possuem filhos com deficiência auditiva e, com os seus resultados, foram analisadas a qualidade de vida (QV) e a confiabilidade, a partir do teste estatístico alfa de Cronbach (α). Resultados: Na primeira versão (tradução), dentre os 25 itens presentes, apenas em 4 houve divergências entre as tradutoras; após as correções, houve a segunda versão (retrotradução), em que foram identificadas mais 4 divergências. Por fim, após as correções finais, a última versão foi elaborada e usada na amostra piloto sem divergências, e, dessa forma, foi aplicada nas famílias de filhos surdos, as quais se consideraram satisfeitas em relação à QV. Com o teste alfa de Cronbach (α) foi verificado que a escala tem confiabilidade satisfatória. Conclusão: A versão em PB da FQOLS é um instrumento de fácil aplicação e com confiabilidade satisfatória. As famílias estão satisfeitas com sua QVF. Conclusion

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“…Quality of life can be understood as achieving goals in major life settings at a personal level and social well-being enjoyed by families and the wider community (Schippers and van Heumen 2014). With the recognition of the family as an important resource for persons with disabilities, but at the same time the impact disability has on family life, family quality of life domains were formulated, including family interactions, parenting, emotional well-being, physical and material well-being, influence of values, and disability-related support (Samuel et al 2012).…”

Section: Family Quality Of Life Approachmentioning

confidence: 99%

The grace of motherhood: disabled women contending with societal denial of intimacy, pregnancy, and motherhood in Ethiopia

Tefera

Engen

Klink

et al. 2017

Disability & Society

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General rightsCopyright and moral rights for the publications made accessible in the public portal are retained by the authors and/or other copyright owners and it is a condition of accessing publications that users recognise and abide by the legal requirements associated with these rights.-Users may download and print one copy of any publication from the public portal for the purpose of private study or research -You may not further distribute the material or use it for any profit-making activity or commercial gain -You may freely distribute the URL identifying the publication in the public portal Take down policyIf you believe that this document breaches copyright, please contact us providing details, and we will remove access to the work immediately and investigate your claim. ABSTRACTThis study aimed to provide better understanding of intimacy and marriage, pregnancy, birth, and motherhood experiences of women with disability in Ethiopia. Qualitative, in-depth, and semi-structured interviews along with personal observations were used to explore the full experiences of participants, as told in their own words. The result of the interviews indicated that relationships and motherhood proved a very rewarding option for women with disabilities. They also expressed their need for intimacy regardless of society's denial. Challenges identified include negative societal attitudes toward women with disabilities regarding relationship, pregnancy, and child-rearing. Accessibility of health centers in addition to the ignorance and negative attitudes of the physicians are also reported to be major challenges for the interviewees. This study highlights how rewarding the experience of motherhood was for the interviewees and also shows that women with disabilities face challenges at every step of their experiences, because of society's prejudices toward disability. Points of Interest• This paper reports on Ethiopian disabled women's experience on intimacy, pregnancy and motherhood.• Interview data revealed that mothers experienced significant challenges with regard to accessibility of health centers, physician's lack of knowledge about and problematic attitudes toward them and more general societal prejudices towards individuals with disability.• The interview data showed that the experience of intimacy and be(com)ing empowered women.

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Review: The development of family quality of life concepts and measures

Cited by 133 publications

References 70 publications

Editorial for Special Issue on Quality of Life: Exploring New Grounds

Editorial for Special Issue on Quality of Life: Exploring New Grounds

Adaptação Cultural da Escala de Qualidade de Vida Familiar (Family Quality of Life Scale) para o Português Brasileiro

The grace of motherhood: disabled women contending with societal denial of intimacy, pregnancy, and motherhood in Ethiopia

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