Quality of life of parents and siblings of children with cochlear implants
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摘要
Objectives: This study examined the quality of life(QoL) of the parents and siblings of hearing-impaired children with cochlear implants(CIs).Design: This is a cross-sectional, questionnaire-based study. The questionnaire consists of three sub-domains-interaction, emotional well-being and support for the hearing-impaired child and the overall QoL – and two open-ended questions for participants to provide comments and suggestions to enhance their family's QoL. A total of 63 questionnaires were e-mailed or mailed to families who met the inclusion criteria.Setting: The study was conducted under the Center for Rehabilitation & Special Needs, Faculty of Health Sciences, Universiti Kebangsaan Malaysia, Kuala Lumpur.Participants: A total of 79 parents and 23 siblings from 44 families of children with CI participated in this study.Main outcome measures: The mean score for each of the sub-domain and the overall QoL for both subject groups were computed. The answers for the open-ended questions were listed and organized into themes.Results: There were significant correlations between the overall QoL score and each of the test domains for the parents' group(p < 0.01). For the siblings' group, only the interaction and support domains were significant.Interaction was the main sub-domain affecting the parents' QoL but for siblings, this could not be determined. A total of 60% of the pooled comments were classified as ‘concerns'. As for the suggestions, 38.7% requested some form of support, mainly financial(41.7%).Conclusions: Families with hearing impaired children with CI have numerous concerns that need to be addressed, even though, on average, they were satisfied with their overall QoL.
Objectives: This study examined the quality of life(QoL) of the parents and siblings of hearing-impaired children with cochlear implants(CIs).Design: This is a cross-sectional, questionnaire-based study. The questionnaire consists of three sub-domains-interaction, emotional well-being and support for the hearing-impaired child and the overall QoL – and two open-ended questions for participants to provide comments and suggestions to enhance their family's QoL. A total of 63 questionnaires were e-mailed or mailed to families who met the inclusion criteria.Setting: The study was conducted under the Center for Rehabilitation & Special Needs, Faculty of Health Sciences, Universiti Kebangsaan Malaysia, Kuala Lumpur.Participants: A total of 79 parents and 23 siblings from 44 families of children with CI participated in this study.Main outcome measures: The mean score for each of the sub-domain and the overall QoL for both subject groups were computed. The answers for the open-ended questions were listed and organized into themes.Results: There were significant correlations between the overall QoL score and each of the test domains for the parents' group(p < 0.01). For the siblings' group, only the interaction and support domains were significant.Interaction was the main sub-domain affecting the parents' QoL but for siblings, this could not be determined. A total of 60% of the pooled comments were classified as ‘concerns'. As for the suggestions, 38.7% requested some form of support, mainly financial(41.7%).Conclusions: Families with hearing impaired children with CI have numerous concerns that need to be addressed, even though, on average, they were satisfied with their overall QoL.
Objectives: This study examined the quality of life(QoL) of the parents and siblings of hearing-impaired children with cochlear implants(CIs).Design: This is a cross-sectional, questionnaire-based study. The questionnaire consists of three sub-domains-interaction, emotional well-being and support for the hearing-impaired child and the overall QoL – and two open-ended questions for participants to provide comments and suggestions to enhance their family's QoL. A total of 63 questionnaires were e-mailed or mailed to families who met the inclusion criteria.Setting: The study was conducted under the Center for Rehabilitation & Special Needs, Faculty of Health Sciences, Universiti Kebangsaan Malaysia, Kuala Lumpur.Participants: A total of 79 parents and 23 siblings from 44 families of children with CI participated in this study.Main outcome measures: The mean score for each of the sub-domain and the overall QoL for both subject groups were computed. The answers for the open-ended questions were listed and organized into themes.Results: There were significant correlations between the overall QoL score and each of the test domains for the parents' group(p < 0.01). For the siblings' group, only the interaction and support domains were significant.Interaction was the main sub-domain affecting the parents' QoL but for siblings, this could not be determined. A total of 60% of the pooled comments were classified as ‘concerns'. As for the suggestions, 38.7% requested some form of support, mainly financial(41.7%).Conclusions: Families with hearing impaired children with CI have numerous concerns that need to be addressed, even though, on average, they were satisfied with their overall QoL.
引文
Almeida,R.P.de,Matas,C.G.,Couto,M.I.V.,Carvalho,A.C.M.de,2015.Quality of life evaluation in children with cochlear implants.Co DAS 27,29-36.https://doi.org/10.1590/2317-1782/20152014129.
Borton,S.A.,Mauze,E.,Lieu,J.E.C.,2010.Quality of life in children with unilateral hearing loss:a pilot study.Am.J.Audiol.19,61-72.https://doi.org/10.1044/1059-0889(2010/07-0043.
Chen,H.Y.,Boore,J.R.P.,2010.Translation and back-translation in qualitative nursing research:methodological review.J.Clin.Nurs.19,234-239.https://doi.org/10.1111/j.1365-2702.2009.02896.x.
Cohen,S.M.,Labadie,R.F.,Dietrich,M.S.,Haynes,D.S.,2004.Quality of life in hearingimpaired adults:the role of cochlear implants and hearing aids.Otolaryngol.Head Neck Surg.131,413-422.https://doi.org/10.1016/j.otohns.2004.03.026.
Cuzzocrea,F.,Larcan,R.,Costa,S.,Gazzano,C.,2014.Parents'competence and social skills in siblings of disabled children.Soc.Behav.Personal.an Int.J.42,45-57.https://doi.org/10.2224/sbp.2014.42.1.45.
Davis,K.,Gavidia-Payne,S.,2009.The impact of child,family,and professional support characteristics on the quality of life in families of young children with disabilities.J.Intellect.Dev.Disabil.34,153-162.https://doi.org/10.1080/13668250902874608.
Emerson,E.,Giallo,R.,2014.The wellbeing of siblings of children with disabilities.Res.Dev.Disabil.35,2085-2092.https://doi.org/10.1016/j.ridd.2014.05.001.
Grawburg,M.,Howe,T.,Worrall,L.,Scarinci,N.,2013.A qualitative investigation into third-party functioning and third-party disability in aphasia:positive and negative experiences of family members of people with aphasia.Aphasiology 27(7),828-848.https://doi.org/10.1080/02687038.2013.768330.
Hoffman,L.,Marquis,J.,Poston,D.,Summers,J.A.,Turnbull,A.,2006.Assessing family outcomes:psychometric evaluation of the beach center family quality of life scale.J.Marriage Fam.68,1069-1083.https://doi.org/10.1111/j.1741-3737.2006.00314.x.
Huttunen,K.,Rimmanen,S.,Vikman,S.,Virokannas,N.,Sorri,M.,Archbold,S.,Lutman,M.E.,2009.Parents'views on the quality of life of their children 2-3 years after cochlear implantation.Int.J.Pediatr.Otorhinolaryngol.73,1786-1794.https://doi.org/10.1016/j.ijporl.2009.09.038.
Isarin,J.,van Zadelhoff,I.,Wolters-Leermakers,N.,Speksnijder-Bregman,M.,Hannink,M.,Knoors,H.,2015.A World of difference.Parental perspectives on cochlear implantation in deaf children with additional disabilities.Deaf.Educ.Int.17,219-230.https://doi.org/10.1179/1557069X15Y.0000000007.
Krejcie,R.V.,Morgan,D.W.,1970.Determining sample size for research activities.Educ.Psychol.Meas.30,607-610.https://doi.org/10.1177/001316447003000308.
Liu,H.,Liu,H.-X.,Kang,H.-Y.,Gu,Z.,Hong,S.-L.,2016.Evaluation on health-related quality of life in deaf children with cochlear implant in China.Int.J.Pediatr.Otorhinolaryngol.88,136-141.https://doi.org/10.1016/j.ijporl.2016.06.027.
Looi,V.,Lee,Z.Z.,Loo,J.H.Y.,2016.Quality of life outcomes for children with hearing impairment in Singapore.Int.J.Pediatr.Otorhinolaryngol.80,88-100.https://doi.org/10.1016/j.ijporl.2015.11.011.
Maneesriwongul,W.,Dixon,J.K.,2004.Instrument translation process:a methods review.J.Adv.Nurs.48,175-186.https://doi.org/10.1111/j.1365-2648.2004.03185.x.
Moroe,N.,Kathrada,N.,2016.The long-term concerns post cochlear implantation as experienced by parents/caregivers of prelingually deaf children between the ages of 3and 5 years in Gauteng Province,South Africa.SAJCH South African J.Child Heal 10,126-129.https://doi.org/10.7196/SAJCH.2016v106i7.1049.
Moyson,T.,Roeyers,H.,2012.“The overall quality of my life as a sibling is all right,but of course,it could always be better”.Quality of life of siblings of children with intellectual disability:the siblings'perspectives.J.Intellect.Disabil.Res.56,87-101.https://doi.org/10.1111/j.1365-2788.2011.01393.x.
Nunnally,J.,1978.Psychometric Theory.Mc Graw-Hill,New York.https://doi.org/10.1037/018882.
O'Neill,C.,Lutman,M.E.,Archbold,S.M.,Gregory,S.,Nikolopoulos,T.P.,2004.Parents and their cochlear implanted child:questionnaire development to assess parental views and experiences.Int.J.Pediatr.Otorhinolaryngol.68,149-160.https://doi.org/10.1016/j.ijporl.2003.09.015.
Orabi,A.A.,Mawman,D.,Al-Zoubi,F.,Saeed,S.R.,Ramsden,R.T.,2006.Cochlear implant outcomes and quality of life in the elderly:manchester experience over 13years.Clin.Otolaryngol.31,116-122.https://doi.org/10.1111/j.1749-4486.2006.01156.x.
Scarinci,N.,Worrall,L.,Hickson,L.,2012.Factors associated with third-party disability in spouses of older people with hearing impairment.Ear Hear.33,698-708.https://doi.org/10.1097/AUD.0b013e31825aab39.
Scarinci,N.,Worrall,L.,Hickson,L.,2009.The ICF and third-party disability:its application to spouses of older people with hearing impairment.Disabil.Rehabil.25,2088-2100.https://doi.org/10.3109/09638280902927028a.
Spahn,C.,Burger,T.,L?schmann,C.,Richter,B.,2004.Quality of life and psychological distress in parents of children with a cochlear implant.Cochlear Implants Int.5,13-27.https://doi.org/10.1002/cii.120.
Umansky,A.M.,Jeffe,D.B.,Lieu,J.E.C.,2011.The HEAR-QL:quality of life questionnaire for children with hearing loss.J.Am.Acad.Audiol.22,644-653.https://doi.org/10.3766/jaaa.22.10.3.
Vermeire,K.,Brokx,J.P.L.,Wuyts,F.L.,Cochet,E.,Hofkens,A.,Van De Heyning,P.H.,2005.Quality-of-life benefit from cochlear implantation in the elderly.Otol.Neurotol.26,188-195.https://doi.org/10.1097/00129492-200503000-00010.
Wake,M.,Hughes,E.K.,Collins,C.M.,Poulakis,Z.,2004.Parent-reported health-related quality of life in children with congenital hearing loss:a population study.Ambul.Pediatr.4,411-417.https://doi.org/10.1367/A03-191R.1.
Borton,S.A.,Mauze,E.,Lieu,J.E.C.,2010.Quality of life in children with unilateral hearing loss:a pilot study.Am.J.Audiol.19,61-72.https://doi.org/10.1044/1059-0889(2010/07-0043.
Chen,H.Y.,Boore,J.R.P.,2010.Translation and back-translation in qualitative nursing research:methodological review.J.Clin.Nurs.19,234-239.https://doi.org/10.1111/j.1365-2702.2009.02896.x.
Cohen,S.M.,Labadie,R.F.,Dietrich,M.S.,Haynes,D.S.,2004.Quality of life in hearingimpaired adults:the role of cochlear implants and hearing aids.Otolaryngol.Head Neck Surg.131,413-422.https://doi.org/10.1016/j.otohns.2004.03.026.
Cuzzocrea,F.,Larcan,R.,Costa,S.,Gazzano,C.,2014.Parents'competence and social skills in siblings of disabled children.Soc.Behav.Personal.an Int.J.42,45-57.https://doi.org/10.2224/sbp.2014.42.1.45.
Davis,K.,Gavidia-Payne,S.,2009.The impact of child,family,and professional support characteristics on the quality of life in families of young children with disabilities.J.Intellect.Dev.Disabil.34,153-162.https://doi.org/10.1080/13668250902874608.
Emerson,E.,Giallo,R.,2014.The wellbeing of siblings of children with disabilities.Res.Dev.Disabil.35,2085-2092.https://doi.org/10.1016/j.ridd.2014.05.001.
Grawburg,M.,Howe,T.,Worrall,L.,Scarinci,N.,2013.A qualitative investigation into third-party functioning and third-party disability in aphasia:positive and negative experiences of family members of people with aphasia.Aphasiology 27(7),828-848.https://doi.org/10.1080/02687038.2013.768330.
Hoffman,L.,Marquis,J.,Poston,D.,Summers,J.A.,Turnbull,A.,2006.Assessing family outcomes:psychometric evaluation of the beach center family quality of life scale.J.Marriage Fam.68,1069-1083.https://doi.org/10.1111/j.1741-3737.2006.00314.x.
Huttunen,K.,Rimmanen,S.,Vikman,S.,Virokannas,N.,Sorri,M.,Archbold,S.,Lutman,M.E.,2009.Parents'views on the quality of life of their children 2-3 years after cochlear implantation.Int.J.Pediatr.Otorhinolaryngol.73,1786-1794.https://doi.org/10.1016/j.ijporl.2009.09.038.
Isarin,J.,van Zadelhoff,I.,Wolters-Leermakers,N.,Speksnijder-Bregman,M.,Hannink,M.,Knoors,H.,2015.A World of difference.Parental perspectives on cochlear implantation in deaf children with additional disabilities.Deaf.Educ.Int.17,219-230.https://doi.org/10.1179/1557069X15Y.0000000007.
Krejcie,R.V.,Morgan,D.W.,1970.Determining sample size for research activities.Educ.Psychol.Meas.30,607-610.https://doi.org/10.1177/001316447003000308.
Liu,H.,Liu,H.-X.,Kang,H.-Y.,Gu,Z.,Hong,S.-L.,2016.Evaluation on health-related quality of life in deaf children with cochlear implant in China.Int.J.Pediatr.Otorhinolaryngol.88,136-141.https://doi.org/10.1016/j.ijporl.2016.06.027.
Looi,V.,Lee,Z.Z.,Loo,J.H.Y.,2016.Quality of life outcomes for children with hearing impairment in Singapore.Int.J.Pediatr.Otorhinolaryngol.80,88-100.https://doi.org/10.1016/j.ijporl.2015.11.011.
Maneesriwongul,W.,Dixon,J.K.,2004.Instrument translation process:a methods review.J.Adv.Nurs.48,175-186.https://doi.org/10.1111/j.1365-2648.2004.03185.x.
Moroe,N.,Kathrada,N.,2016.The long-term concerns post cochlear implantation as experienced by parents/caregivers of prelingually deaf children between the ages of 3and 5 years in Gauteng Province,South Africa.SAJCH South African J.Child Heal 10,126-129.https://doi.org/10.7196/SAJCH.2016v106i7.1049.
Moyson,T.,Roeyers,H.,2012.“The overall quality of my life as a sibling is all right,but of course,it could always be better”.Quality of life of siblings of children with intellectual disability:the siblings'perspectives.J.Intellect.Disabil.Res.56,87-101.https://doi.org/10.1111/j.1365-2788.2011.01393.x.
Nunnally,J.,1978.Psychometric Theory.Mc Graw-Hill,New York.https://doi.org/10.1037/018882.
O'Neill,C.,Lutman,M.E.,Archbold,S.M.,Gregory,S.,Nikolopoulos,T.P.,2004.Parents and their cochlear implanted child:questionnaire development to assess parental views and experiences.Int.J.Pediatr.Otorhinolaryngol.68,149-160.https://doi.org/10.1016/j.ijporl.2003.09.015.
Orabi,A.A.,Mawman,D.,Al-Zoubi,F.,Saeed,S.R.,Ramsden,R.T.,2006.Cochlear implant outcomes and quality of life in the elderly:manchester experience over 13years.Clin.Otolaryngol.31,116-122.https://doi.org/10.1111/j.1749-4486.2006.01156.x.
Scarinci,N.,Worrall,L.,Hickson,L.,2012.Factors associated with third-party disability in spouses of older people with hearing impairment.Ear Hear.33,698-708.https://doi.org/10.1097/AUD.0b013e31825aab39.
Scarinci,N.,Worrall,L.,Hickson,L.,2009.The ICF and third-party disability:its application to spouses of older people with hearing impairment.Disabil.Rehabil.25,2088-2100.https://doi.org/10.3109/09638280902927028a.
Spahn,C.,Burger,T.,L?schmann,C.,Richter,B.,2004.Quality of life and psychological distress in parents of children with a cochlear implant.Cochlear Implants Int.5,13-27.https://doi.org/10.1002/cii.120.
Umansky,A.M.,Jeffe,D.B.,Lieu,J.E.C.,2011.The HEAR-QL:quality of life questionnaire for children with hearing loss.J.Am.Acad.Audiol.22,644-653.https://doi.org/10.3766/jaaa.22.10.3.
Vermeire,K.,Brokx,J.P.L.,Wuyts,F.L.,Cochet,E.,Hofkens,A.,Van De Heyning,P.H.,2005.Quality-of-life benefit from cochlear implantation in the elderly.Otol.Neurotol.26,188-195.https://doi.org/10.1097/00129492-200503000-00010.
Wake,M.,Hughes,E.K.,Collins,C.M.,Poulakis,Z.,2004.Parent-reported health-related quality of life in children with congenital hearing loss:a population study.Ambul.Pediatr.4,411-417.https://doi.org/10.1367/A03-191R.1.