American Parent Perspectives on Quality of Life in Pediatric Cochlear Implant Recipients

Kumar, Roshini; Warner-Czyz, Andrea D.; Silver, Cheryl H.; Loy, Betty; Tobey, Emily A.

doi:10.1097/aud.0000000000000108

Cited by 36 publications

(90 citation statements)

References 1 publication

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“…Some studies that look into HR-QOL in children with hearing loss find similar levels of HR-QOL as is found in normal hearing peers see e.g. (Domellof, Hedlund, & Odman, 2014;Duarte, Santos, Rego, & Nunes, 2014;Hintermair, 2011;Kumar, Warner-Czyz, Silver, Loy, & Tobey, 2015;Lovett, Kitterick, Hewitt, & Summerfield, 2010;Loy, Warner-Czyz, Tong, Tobey, & Roland, 2010;Meserole et al, 2014;Perez-Mora et al, 2012;Warner-Czyz, Loy, Roland, Tong, & Tobey, 2009). Other studies present results that are not definite or indicate reduced levels of HR-QOL in children with CIs in one or more domains, particularly with regards to psychosocial well-being, school well-being or peer-problems see e.g.…”

Section: Hr-qol In Children With Cis Compared To Children With Normalmentioning

confidence: 86%

Parents' Perception of Health-Related Quality of Life in Children With Cochlear Implants: The Impact of Language Skills and Hearing

Haukedal

Torkildsen

Lyxell

et al. 2018

J Speech Lang Hear Res

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Section: Hr-qol In Children With Cis Compared To Children With Normalmentioning

confidence: 86%

Parents' Perception of Health-Related Quality of Life in Children With Cochlear Implants: The Impact of Language Skills and Hearing

Haukedal

Torkildsen

Lyxell

et al. 2018

J Speech Lang Hear Res

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“…Recently, investigators have been focusing their studies on the quality of life (QL) theme (1,2) , which, each year, is promoting not only its possibility but also being many people's purpose of life.…”

Section: Introductionmentioning

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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“…Other research that evaluates parent-centered outcomes in pediatric tonsillectomy focus on outcomes such as disease-specific and health-related quality of life, parental knowledge about otolaryngologic disease and surgery, parent satisfaction with care, and parental decision conflict for surgery 5,31–33 . Our study complements these previous studies by looking at parental experiences outside of the clinical context.…”

Section: Discussionmentioning

confidence: 99%

Evaluation of Parental Perspectives and Concerns About Pediatric Tonsillectomy in Social Media

Hairston

Links

Harris

et al. 2019

JAMA Otolaryngol Head Neck Surg

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Importance: Tonsillectomy is common in children, but little is known about parental preferences and values concerning this surgery. Social media offers a novel opportunity to evaluate parent understanding and experience of care. Objective: We systematically evaluate posts in a well-known social media site to identify parent perspectives about tonsillectomy in children that may not be apparent in a routine clinical encounter. Design: In this mixed methods analysis, we searched Twitter© for posts (“tweets”) from 2008-2017 written by parents about their child’s tonsillectomy. We applied modified grounded theory to develop a coding taxonomy to classify these tweets. Two reviewers assessed tweets for thematic synthesis and classification. Tweets were quantified, and descriptive statistics were obtained for each theme. Setting: The posts on the social media site www.twitter.com. Participants: A sample of over 700 adult American parents of children who received or will receive a tonsillectomy and posted on Twitter. Main Outcomes and Measures: Themes of parent experiences and perspectives about their child’s tonsillectomy. Results: Of 5801 tweets retrieved, 782 satisfied our inclusion criteria. Tweets fell into overarching themes of 1. procedural concerns (n=549, 70.2%) and 2. attitudes/experiences (n=498, 63.7%). Common tweets related to procedural concerns regarded surgical indication (“sick for months”; n=55,7.0%), recovery [n=227, 29.0%; including child’s attitude (“she is nervous”; n=89, 11.4%) nutrition (“won’t eat”; n=89, 11.4%), and parental experience (“harder on the parents than the kid”;(n=87, 11.1%))]. Common tweets regarding attitudes/experiences included tenor of overall care (“yay for tonsil surgery!”; n=155, 19.8%), and fears/apprehensions (“frankly, I’m terrified”; n=178, 22.8%). Conclusions and Relevance: This analysis provides insight into parent perspectives on pediatric tonsillectomy. Parents commonly tweet concerns about surgery that may not be recognized in routine clinician-parent dialogue. Findings may be used to guide clinicians in educating and counseling parents, and further engaging parents and children in shared decision-making for tonsillectomy.

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American Parent Perspectives on Quality of Life in Pediatric Cochlear Implant Recipients

Cited by 36 publications

References 1 publication

Parents' Perception of Health-Related Quality of Life in Children With Cochlear Implants: The Impact of Language Skills and Hearing

Parents' Perception of Health-Related Quality of Life in Children With Cochlear Implants: The Impact of Language Skills and Hearing

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

Evaluation of Parental Perspectives and Concerns About Pediatric Tonsillectomy in Social Media

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