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The acceptance of hearing disability among adults experiencing hearing difficulties: a cross-sectional study
Linköping University, Department of Behavioural Sciences and Learning. Linköping University, The Swedish Institute for Disability Research. Linköping University, Faculty of Arts and Sciences. Department of Vision and Hearing Sciences, Anglia Ruskin University, Cambridge, UK .
Linköping University, Department of Behavioural Sciences and Learning. Linköping University, The Swedish Institute for Disability Research. Linköping University, Faculty of Arts and Sciences.
Linköping University, The Swedish Institute for Disability Research. Linköping University, Department of Behavioural Sciences and Learning, Disability Research. Linköping University, Faculty of Arts and Sciences.
Linköping University, The Swedish Institute for Disability Research. Linköping University, Department of Behavioural Sciences and Learning, Disability Research. Linköping University, Faculty of Arts and Sciences. Department of Clinical Neuroscience, Karolinska Institute, Stockholm, Sweden.ORCID iD: 0000-0003-4753-6745
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2014 (English)In: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 4, no e004066Article in journal (Refereed) Published
Abstract [en]

Objective This study developed the Hearing Disability Acceptance Questionnaire (HDAQ) and tested its construct and concurrent validities.

Design Cross-sectional.

Participants A total of 90 participants who were experiencing hearing difficulties were recruited in the UK.

Outcome measures The HDAQ was developed based on the Tinnitus Acceptance Questionnaire (TAQ). Participants completed self-report measures regarding hearing disability acceptance, hearing disability, symptoms of anxiety and depression and a measure of stages of change.

Results The HDAQ has a two-factor structure that explains 75.69% of its variance. The factors identified were activity engagement and avoidance and suppression. The scale showed a sufficient internal consistency (Cronbach's α=0.86). The HDAQ also had acceptable concurrent validity with regard to self-reported hearing disability, self-reported anxiety and depression and readiness to change measures.

Conclusions Acceptance is likely an important aspect of coping with chronic health conditions. To our knowledge, no previously published and validated scale measures the acceptance of hearing disability; therefore, the HDAQ might be useful in future research. However, the role of acceptance in adjusting to hearing disability must be further investigated

Place, publisher, year, edition, pages
BMJ Open , 2014. Vol. 4, no e004066
National Category
Social Sciences
Identifiers
URN: urn:nbn:se:liu:diva-102999DOI: 10.1136/bmjopen-2013-004066ISI: 000337363700020OAI: oai:DiVA.org:liu-102999DiVA: diva2:685300
Available from: 2014-01-09 Created: 2014-01-09 Last updated: 2017-12-06
In thesis
1. Evaluating the process of change: Studies on patient journey, hearing disability acceptance and stages-of-change
Open this publication in new window or tab >>Evaluating the process of change: Studies on patient journey, hearing disability acceptance and stages-of-change
2013 (English)Doctoral thesis, comprehensive summary (Other academic)
Alternative title[sv]
Utvärdera förändringsprocessen : Studier av patientprocesser, acceptans av hörselnedsättning och stadier av beteendeförändring
Abstract [en]

Person with hearing impairment (PHI) and their Communication partners (CPs) have a range of experiences and milestones before, during and after their audiological assessment and/or rehabilitation sessions. The term ‘patient journey’ refers to understanding the experiences and the processes the patient goes through during the course of the disease and the treatment regime. The aims of the current thesis were: (1) to further develop patient journey models of individuals with gradual-onset hearing impairment and CPs by taking their views into consideration; (2) to develop the patient journey model for PHI of sudden-onset; (3) to develop a self-reported measure of hearing disability acceptance and to study its construct and concurrent validity; (4) to investigate the health behaviour change characteristics of people noticing hearing difficulties using the stages-of-change model. 

Papers I (n=32) and III (n=9) were aimed at further developing the journey model of PHI and their CPs proposed by the Ida Institute. Both studies employed qualitative methods (i.e., focus groups and interviews for data collection and thematic analysis for data analysis), and defined the models based on the perspectives of PHI and CPs both of which had seven main phases. These data were compared with the professionals’ perspectives of the journey as reported in the Ida Institute model which had six main phases. Our studies highlight new phases (i.e., self-evaluation in PHI journey and adaptation in CP journey) and also various commonalities and differences in the perspectives expressed by professionals and patients.

Paper II included a pilot study to explore the patient journey of sudden-onset acquired hearing impairment from both professionals (n=16) and patients (n=4) perspectives. Both identified all the six main phases, which include: awareness; movement; diagnostics; rehabilitation; self-evaluation; and resolution. The pre-awareness phase may hinder the realisation of hearing loss in persons with gradual onset hearing loss, whereas it is far more straightforward in persons with sudden-onset due to its nature of onset.

Papers IV and V employed a cross-sectional design (n=90). Paper IV was aimed at developing a Hearing Disability Acceptance Questionnaire (HDAQ), and to study its construct and concurrent validity. Results suggested that the HDAQ has a two factor structure which explains 75.7% of the variance and had good internal consistency (Cronbach’s alpha of 0.86). Also, the scale had good concurrent validity in relation to self-reported hearing disability, self-reported anxiety and depression and readiness to change measures. Paper V was aimed at understanding the stages-of-change in adults with hearing disability using the University of Rhode Island Change Assessment Scale.  As predicted a high percentage of participants (over 90%) were in the contemplation and preparation stages, supporting the stages-of-change model.

Overall, the papers presented in this thesis may contribute to a better understanding of process of change through hearing impairment in PHI and their CPs. 

Abstract [sv]

Personer med hörselnedsättning (eng. PHI) och deras kommunikationspartners (eng. CPs) har en uppsättning upplevelser och erfarenheter före, under och efter audiologisk bedömning och/eller hörselrehabilitering. Begreppet "patientprocess" avser förståelsen av de erfarenheter och de förändringsprocesser patienten genomgår under sjukdomsförloppet och behandlingen av denna. Syftet med avhandlingen var: (1) att ytterligare utveckla individuella modeller för patientprocessen vid gradvis debut av hörselnedsättning och att ta CPs erfarenheter under beaktande, (2) att utveckla modeller för patientprocessen vid plötslig debut av hörselnedsättning, (3) att utveckla självskattningsmått på acceptans av hörselnedsättning och att studera dess begreppsvaliditet och samtidig validitet, (4) att undersöka beteendeförändring avsende hälsa för personer som upplever hörselnedsättning.

Artikel I (n = 32) och artikel III (n = 9) syftade bland annat till att vidareutveckla modell av patientprocessen som och deras kommunikationspartner som föreslagits av Ida Institutet. I båda studierna användes kvalitativa metoder (fokusgrupper och intervjuer för datainsamling och tematisk analys) för att bygga modeller av patientprocessen personen med hörselnedsättning och dess kommunikationspartner, där båda modellerna kom att inkludera sju huvudfaser av processen. Resultaten jämfördes med sjukvårdspersonalens perspektiv på patientprocessen enligt Ida Institutets modell. Studierna visar nya faser (självvärdering för PHIs process och anpassning för CPs process). Dessutom identifierades likheter och skillnader i jämförelsen mellan sjukvårdspersonalens och patientens perspektiv.

Artikel II innehåller en pilotstudie för att undersöka och skapa modeller för patientprocessen vid plötslig förvärvad hörselnedsättning från både vårdgivarens (n = 16) och patientens (n = 4) perspektiv. Båda grupper identifierade alla sex huvudfaser. Dessa inkluderar: medvetenhet; rörelse; diagnos; rehabilitering; självvärdering; och lösning på problemet. Pre-awareness (för-medvetande) fasen kan eventuellt fördröja/förhindra förståelsen för hörselnedsättningen för personer med gradvis tilltagande hörselnedsättning, emedan förståelsen är mer direkt för personer med plötslig förvärvad hörselnedsättning.

Artikel IV och artikel V var bägge baserade på en tvärsnittsstudie (n=90). Artikel IV syftade till att utveckla ett frågeformulär angående acceptans av hörselhandikapp (eng. Hearing Disabiliy Acceptance Questionnaire, HDAQ) och att studera dess begreppsvaliditet och samtidig validitet. Resultaten visar att HDAQ fick en två-faktor struktur som förklarde 75,7 % av variansen och uppvisade god intern konsistens (Cronbach’s alpha 0,86). Dessutom hade skalan god samtidig validitet i förhållande till självrapporterad hörselnedsättning, självrapporterad ångest och depression, samt i förhållande till beredskap för förändring. Artikel V (n = 90) syftade till att undersöka stadier av beteendeförändring för personer med tidig, förmodad hörselnedsättning, via den så kallade stages-of-change modellen. Mätinstrumentet för beteendeförändring var University of Rhode Island Change Assessment Scale. Som förväntat var en hög andel av deltagarna (över 90%) i tidiga stadier (eng. contemplation and preparation), vilket stöder stages-of-change modellen.

Sammanfattningsvis, bidrar artiklarna i denna avhandling till en bättre förståelse av förändingsprocesser via hörselnedsättning för personer med hörselnedsättning och deras kommunikationspartners.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2013. 56 p.
Series
Linköping Studies in Arts and Science, ISSN 0282-9800 ; 587Studies from the Swedish Institute for Disability Research, ISSN 1650-1128 ; 52
Keyword
Patient journey, Stages of chage, acceptance, hearing disability, hearing loss, Patientprocess, Beteendeförändring, Acceptans, Hörselhandikapp, Hörselskada
National Category
Otorhinolaryngology
Identifiers
urn:nbn:se:liu:diva-98046 (URN)10.3384/diss.diva-98046 (DOI)978-91-7519-534-6 (ISBN)
Public defence
2013-10-25, I:101, Hus I, Campus Valla, Linköpings universitet, Linköping, 10:00 (English)
Opponent
Supervisors
Available from: 2013-09-30 Created: 2013-09-26 Last updated: 2014-08-13Bibliographically approved

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Manchaiah, Vinaya K CMolander, PeterRönnberg, JerkerAndersson, GerhardLunner, Thomas

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