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Evaluating the process of change: Studies on patient journey, hearing disability acceptance and stages-of-change
Linköping University, Department of Behavioural Sciences and Learning. Linköping University, The Institute of Technology.ORCID iD: 35330310500
2013 (English)Doctoral thesis, comprehensive summary (Other academic)Alternative title
Utvärdera förändringsprocessen : Studier av patientprocesser, acceptans av hörselnedsättning och stadier av beteendeförändring (Swedish)
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 [en]
Patient journey, Stages of chage, acceptance, hearing disability, hearing loss
Keyword [sv]
Patientprocess, Beteendeförändring, Acceptans, Hörselhandikapp, Hörselskada
National Category
Otorhinolaryngology
Identifiers
URN: urn:nbn:se:liu:diva-98046DOI: 10.3384/diss.diva-98046ISBN: 978-91-7519-534-6 (print)OAI: oai:DiVA.org:liu-98046DiVA: diva2:651570
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
List of papers
1. The patient journey of adults with hearing impairment: the patients’ views
Open this publication in new window or tab >>The patient journey of adults with hearing impairment: the patients’ views
2011 (English)In: Clinical Otolaryngology, ISSN 1749-4478, E-ISSN 1365-2273, Vol. 36, no 3, 227-234 p.Article in journal (Refereed) Published
Abstract [en]

Objective:  The term ‘patient journey’ refers to the experiences and processes the patient goes through during the course of a disease and its treatment. The study explores the perspectives of adults with acquired hearing impairment and to further develop the patient journey template based on the Ida model. Design:  Qualitative approach using thematic analysis and process mapping. Setting:  Support groups of people with hearing impairment. Participants:  Thirty-two adults with acquired hearing impairment from two hearing impaired groups in Wales. All were hearing aid users. Main outcome measure:  Participants worked in small groups to describe their experiences through hearing loss. These data were used to develop a template of the patients’ perspective of the journey. This was then compared with the perspective of professionals, and a ‘patient journey template for adults with acquired hearing impairment’ was developed. Results:  This template identifies seven main phases as follows: (i) pre-awareness; (ii) awareness; (iii) movement; (iv) diagnostics; (v) rehabilitation; (vi) self-evaluation; and (vii) resolution. The study identified a number of new components. The self-evaluation component was not defined by professionals and reflects the need for patients to consider the costs, benefits and alternatives to the approach provided by audiologists. It is important for audiologists to be aware of this. Conclusion:  The study highlighted the differences and commonalities in perspectives of professionals and patients. Use of the patient journey can help clinicians to understand the unique experiences their patients go through help them to develop patient-centred treatment.

National Category
Otorhinolaryngology
Identifiers
urn:nbn:se:liu:diva-87637 (URN)10.1111/j.1749-4486.2011.02320.x (DOI)
Available from: 2013-01-20 Created: 2013-01-20 Last updated: 2017-12-06
2. The patient journey of adults with sudden-onset acquired hearing impairment: a pilot study
Open this publication in new window or tab >>The patient journey of adults with sudden-onset acquired hearing impairment: a pilot study
2012 (English)In: Journal of Laryngology and Otology, ISSN 0022-2151, E-ISSN 1748-5460, Vol. 126, no 5, 475-481 p.Article in journal (Refereed) Published
Abstract [en]

Objective: A previous study examined the patient journey of adults with gradual-onset acquired hearing impairment. This study examined the same for adults with sudden-onset acquired hearing impairment, and assessed differences. less thanbrgreater than less thanbrgreater thanStudy design: Data were collected from 16 audiologists, using the Ida Institute template, and from four adults with sudden-onset acquired hearing impairment, through semi-structured interviews. Data were analysed using thematic analysis and presented using a process mapping model. less thanbrgreater than less thanbrgreater thanResults: A patient journey template for sudden-onset acquired hearing impairment was developed based on the professionals and patients perspectives. The main difference between these two groups perspectives was seen in the self-evaluation phase: some stages within this phase were recognised by the patients but not by the professionals. The main difference between the current and the previous study was the absence of a pre-awareness phase in the journey described by patients with sudden-onset acquired hearing impairment, compared with that described by patients with gradual-onset acquired hearing impairment. less thanbrgreater than less thanbrgreater thanConclusion: Patient journey templates could be useful counselling tools for ear and hearing healthcare specialists. However, such templates should be used only as a baseline; it is important to take a detailed case history to understand each patients unique experience, including the psychosocial impact of hearing impairment.

Place, publisher, year, edition, pages
Cambridge University Press (CUP), 2012
Keyword
Hearing Impairment, Natural History, Prognosis, Rehabilitation, Patient journey, Sudden-onset hearing impairment
National Category
Otorhinolaryngology
Identifiers
urn:nbn:se:liu:diva-77869 (URN)10.1017/S0022215111003197 (DOI)000303893900008 ()
Available from: 2012-05-31 Created: 2012-05-31 Last updated: 2017-12-07
3. Communication partners’ journey through their partner’s hearing impairment
Open this publication in new window or tab >>Communication partners’ journey through their partner’s hearing impairment
2013 (English)In: International Journal of Otolaryngology, ISSN 1687-9201, E-ISSN 1687-921X, Vol. 2013, no 707910, 1-11 p.Article in journal (Refereed) Published
Abstract [en]

The objective of the study was to further the Ida Institute model on communication partner’s (CPs) journey through experiences of person with hearing impairment (PHI), based on the perspectives of CPs. Qualitative approach using thematic analysis and process mapping. Nine CPs of hearing aid users participated in the study, recruited through the Swansea hearing impaired support group. Semi-structured interviews were conducted and the data were used to develop a CP journey template. The Ida Institute model (based on professionals’ perspective) was compared with the new template developed (based on CPs perspectives). Seven main phases were identified which include: (1) contemplation; (2) awareness; (3) persuasion; (4) validation; (5) rehabilitation; (6) adaptation; and (7) resolution. The results suggest some commonalities and differences between the views of professionals and CPs. A new phase ‘adaptation’ was identified from CPs’ reported experiences, which was not identified by professionals in the Ida Institute model. The CP journey model could be a useful tool during audiological enablement/rehabilitation sessions to promote discussion between the PHI and the CP. In addition, it can be used in the training of hearing healthcare professionals.

Place, publisher, year, edition, pages
Hindawi Publishing Corporation, 2013
Keyword
Patient journey, Communication partners, significant others, hearing impairment, hearing loss
National Category
Otorhinolaryngology
Identifiers
urn:nbn:se:liu:diva-87633 (URN)10.1155/2013/707910 (DOI)
Available from: 2013-01-20 Created: 2013-01-20 Last updated: 2017-12-06
4. The acceptance of hearing disability among adults experiencing hearing difficulties: a cross-sectional study
Open this publication in new window or tab >>The acceptance of hearing disability among adults experiencing hearing difficulties: a cross-sectional study
Show others...
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
National Category
Social Sciences
Identifiers
urn:nbn:se:liu:diva-102999 (URN)10.1136/bmjopen-2013-004066 (DOI)000337363700020 ()
Available from: 2014-01-09 Created: 2014-01-09 Last updated: 2017-12-06
5. Stages of change in adults noticing hearing difficulties but not using hearing aids
Open this publication in new window or tab >>Stages of change in adults noticing hearing difficulties but not using hearing aids
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Objective: The aim of the current study was to investigate health behaviour change characteristics based on the transtheoretical stages-of-change model in adults noticing hearing difficulties but not using hearing aids using the University of Rhode Island Change Assessment (URICA) scale.

Design: The study employed a cross-sectional design.

Study Sample: The study was conducted in United Kingdom and 90 pre-clinical participants completed URICA as well as measures of self-reported hearing disability, self-reported anxiety and depression, self-reported hearing disability acceptance and also provided some demographic details online.

Results: As predicted, the results indicate that a high percentage of participants (over 90%) were in the contemplation and preparation stages. This was in contrast to a previous study, which included participants attending audiology clinic, where most participants (about 80%) were in the action stage (Laplante-Lévesque et al., 2013). In addition, statistically significant differences were observed in terms of readiness to change composite and committed action composite between the study samples in the current and the previous study.

Conclusions: Study results support the stages-of-change model. In addition, implications of the current study and areas for future research are discussed.

Keyword
Hearing disability, hearing loss, stages of change, readiness for change, hearing helpseeking, audiological rehabilitation
National Category
Otorhinolaryngology
Identifiers
urn:nbn:se:liu:diva-95919 (URN)
Available from: 2013-08-09 Created: 2013-08-09 Last updated: 2014-11-28Bibliographically approved

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