Using Action Research and Peer Perspectives to Develop Technology That Facilitates Behavioral Change...

8/9/2019 Using Action Research and Peer Perspectives to Develop Technology That Facilitates Behavioral Change and Self-M

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Research ArticleUsing Action Research and Peer Perspectives to DevelopTechnology That Facilitates Behavioral Change andSelf-Management in COPD

Catherine McCabe,1 John Dinsmore,1 Anne Marie Brady,1 Gabrielle Mckee,1

Sharon ODonnell,1 and David Prendergast2

School o Nursing & Midwiery, rinity College Dublin, DOlier Street, Dublin , Ireland Intel Ireland Ltd., Collinstown Industrial Park, Leixlip, County Kildare, Ireland

Correspondence should be addressed to Catherine McCabe; [email protected]

Received February ; Revised April ; Accepted April ; Published May

Academic Editor: Frank ost

Copyright Catherine McCabe et al. Tis is an open access article distributed under the Creative Commons AttributionLicense, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properlycited.

Background. Behavioural change and sel-management in patients with chronic illness may help to control symptoms, avoidrehospitalization, enhance quality o lie, and decrease mortality and morbidity. Objective. Guided by action research principlesand using mixed methods, the aim o this project was to develop peer based educational, motivational, and health-promotingpeer based videos, using behavioural change principles, to support sel-management in patients with COPD.Methods. Individuals( = 32) living with COPD at home andinvolved in two community based COPD support groupswere invited to participate in thisproject. Focus group/individual interviews and a demographic questionnaire were used to collect data. Results. Analysis revealed categories relevant to behavioural change which included sel-management, support, symptoms, knowledge, rehabilitation, andtechnology. Participants commented that content needed to be specic, and videos needed to be shorter, to be tailored to severity ocondition, to demonstrate normalactivities, to be positive,and to ensure thatcontent is culturally relevant. Conclusions. Tisstudydemonstrated that detailed analysis o patient perspectives and needs or sel-management is essential and should underpin thedevelopment o any ramework, materials, and technology. Te action research design principles provided an effective rameworkor eliciting the data and applying it to technology and testing its relevance to the user.

1. Introduction

Chronic obstructive pulmonary disease (COPD) is the thleading cause o death worldwide []. Te pattern o careor patients with COPD ofen involves lengthy hospitaladmissions, ollowed by a return to the home environmentwith little ollow-up support or the management o diseasesymptoms. Tis inevitably leads to the hospital readmissionwith acute symptom onset which is unsatisactory or theindividual and nancially unsustainable or increasinglystretched health services.

Behavioral change and sel-management in people withchronic illness may help to control symptoms, avoid unnec-essary rehospitalization, enhance quality o lie, and decreaseoverall mortality and morbidity []. Behavioral change

techniques inuence change by using motivating tech-niques, education, problem denition, collaborative goal

setting/problem-solving, contract or change, continuingsupport, and evaluation [].

Recent studies highlight the role that video and multi-media based inormation communication technologies (IC)can play in COPD sel-management. A comparative studyrevealed that individuals using a -minute video outliningthe benets o exercise ollowed by a -minute video exerciseprogramme days a week or weeks had signicantlyimproved physical and emotional unctional capabilities[]. Tis is important as the British Lung FoundationSurvey revealed that less than % o COPD patients inthe UK had access to a rehabilitation exercise programme[].

Hindawi Publishing CorporationInternational Journal of Telemedicine and ApplicationsVolume 2014, Article ID 380919, 10 pageshttp://dx.doi.org/10.1155/2014/380919
http://dx.doi.org/10.1155/2014/380919http://dx.doi.org/10.1155/2014/380919


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International Journal o elemedicine and Applications

A study on the use o video technology to provide moti-vation or exercise concluded that individuals with COPDshowed improved quality o lie (QoL), coping skills, anddiminished atigue when using a videotape series ocused onmotivation and exercise []. wo hundred ourteen COPDpatients took part in this -tiered RC (video intervention

versus standard video versus control). Groups using thevideo intervention were twice as likely to change romsedentary statesto moderate exercise compared to the controlgroups. Te video intervention group saw an improvementin activities o daily living and was particularly effective atprompting exercise with % o patients reporting routineexercise at -month ollow-up. Tis study shows a distinctcorrelation between improved health benets, motivation,and behavioral change with video intervention, suggestingthat videos provide an effective medium to disseminateknowledge and encourage sel-management. A randomizedcontrolled trial that measured the effects o an animateddiagram and video-based online breathing programme ordyspnea in patients with stable COPD concluded that a

video based online training programme resulted in improvedpulmonary unction, exercise capacity, and health status inthe treatment group only [].

Te theory o innovation diffusion states that individualsare more likely to consider technology use when relevant tothem[]. Tereore it is important to design new technologiesincluding content rom a patient centric perspective withreerence to the health condition and cultural context othe individual. Studies related to behavioral change andCOPD show signicant positive effects or sel-efficacy andbehavioral change on administration o a behavioral changeprogramme []. Tis paper discusses ndings rom a projectguided by action research principles that explored patientbased sel-management and technology based programmesor people living at home with COPD and concludes thataction research principles can be an effective rameworkdesign or behavioral change video and multimedia contentdevelopment.

Te main aim o this project was to develop peer basededucational, motivational, and health-promoting peer based

videos, using behavioral change principles, to support sel-management in patients with COPD.

An objective o the project was to explore the needs,sources o support, and experiences o people living at homein relation to their knowledge, ability, and readiness to sel-manage their care needs in relation to COPD.

2. Method

Action research principles and a cross-sectional descriptivemethodology were chosen as a suitable method o enquiryor the aim o this study. Action research is a process by whichnew knowledge is generated and used to achieve change [].Te strength o this process o inquiry lies in its ability togenerate solutions to practical problems. In this study theaction research took place over phases (Figure ).

Ethical approval was provided by the relevant institu-tional ethics committee (Faculty o Health Sciences).

3. Action Research Process

Phase . Te project began with a review o the literatureto identiy the main sel-management needs and resourcesrelevant to COPD in an IC context. Tis was ollowedwith completion o the demographic questionnaire and ocusgroup/individual interviews to ascertain the knowledge,readiness or sel-care, sources o support, and perceived careneeds o people with COPD. Focus group and individualinterviews were video recorded and content was used ordevelopment o sel-management videos in Phase.

Phase . In conjunction with the data rom the interviewsand video recordings, existing educational resources cur-rently accessed by the client group or available to meettheir identied needs were reviewed. Tis data guided andinormed the development o new educational, motivational,and health-promoting peer related videos specic to COPD.Eighteen videos representing the key themes o knowl-edge, symptoms (prevention), sel-management (practices),

rehabilitation, support (including carers), and Real imeHealth were produced. Te theme o Real time Healthwas constructed to highlight the role o psychology and theconstant need or individuals to manage their condition in areal time home environment.

Phase . Participants were invited to participate in ollow-upocus group interviews to explore user views and satisactionwith the video material produced. Tey were shown aseries o ve, -minute videos representing areas o sel-management based on data gathered in Phase. Participantswere asked to discuss any perceived positive and negativeaspects to each video as well as discuss any improvements

they would like to be considered as part o the Phaseitera-tion process. Te key issues that the participants commentedon were that some content needed to be more specic andocused and videos neededto be shorter, to be tailored to levelo severity o condition, to demonstrate normal day-to-dayactivities, to be positive, and to ensure that content is relevantto the Irish Health service.

Phase . Using eedback rom Phase , a second and nalstage o video development was conducted.

4. Participants

reatment o COPD in Ireland is managed mainly throughprimary health care settings by general practitioners (GP)and community nurses. Admission to acute care acilitiesonly occurs or exacerbations o symptoms and dischargeis usually ollowed by attendance at a local rehabilitationprogramme which may last up to weeks and GP visits asrequired. Until recently only inormal local support groupsprovided inormation and social support to people withCOPD; however, recently a national support organization hasbeen established. For the purposes o this study, individualsliving with COPD at home and involved in community basedCOPD support groups were invited to participate in thisproject. Study inormation sheets with contact details were


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distributed at community based COPD support group events.Eligibility criteria included a diagnosis o COPD, member oCOPD support group, over , and English speaking. Wheneligible participants contacted the researcher specic sessionswere organized or those who were interested in attending.

5. Instruments

Participants completed a brie questionnaire comprising items which documented some sociodemographic charac-teristics o the participants. Tese included age, gender,medical insurance, medical/social history, comorbidities,BMI, perceived health status, independence rating, carersupport, where COPD advice was obtained, condence insel-management, and IC use.

Focus group interviews were conducted at communitylocations convenient to the participants, with a researcher asa acilitator. Tere were ocus groups in total ( in Phase and in Phase ), with an average o participants in

each. Te nal total o ocus group participants was asparticipants in Phaseocus groups were the same as Phase. Te themes explored in the interviews included expe-rience, knowledge, sel-management, social support, healthproessional support, social and personal lie, quality o lie,perceptions, cognitions, and condence. welve individualswho participated in a ocus group interview also completedan individual participant perspective interview, our o whomcompleted a second individual interview as part o theprojects prolonged engagement methodology to gather in-depth inormation.

6. Data AnalysisDescriptive statistics, using SPSS version , were used todescribe the demographic data and included means, standarddeviations, percentages, and ranges. Descriptive statisticswere also used to describe the exploratory questions othe second part o the questionnaire. All recordings romthe interviews were transcribed and transerred into NVivo

version or analysis. A constant comparative methodol-ogy acilitated the identication o patterns in participantresponses and uniying concepts acilitating initial codingand development o core categories, which were revisited andconsolidated, in line with the steps in the textural contentanalysis o []. Analysis continued until theoretical satura-

tion was obtained and the number o reerences or eachtheme was calculated. Data rom the individual interviewswas analysed with the ocus groups to triangulate ndings atPhases and , respectively (Figure ). Te content rom theseinterviews was also used to construct the peer-perspective

videos.In order to ensure consistency in coded ndings research

team members used NVivoto manageand review transcribeddata rom the ocus group interviews. Several COPD patientsthat gave important insights within an interview afer codingwere interviewed or a second time (prolonged engagement).Tis is in line with guidelines or ensuring trustworthiness inqualitative interviewing [].

Self-management (practice

Support

KnowledgeRehabilitation

Technology

715

538

288

275

173 84

Symptoms (knowledge and

and strategies)

prevention)

F : Core themes and reerence totals extracted afer codinganalysis at Phase.

7. Results

Recruitment occurred rom July to December . Sociode-mographic characteristics are outlined inable . Tirty-twoindividuals participated in the initial ocus groups at Phaseand again at Phase.

Coding o the transcripts rom Phase revealed core categories relevant to COPD behavioral change. Teseincluded sel-management, support, symptoms, knowledge,rehabilitation, and technology.Figure outlines the numberandportion o reerences attributed to each core theme acrossthe ocus groups and interviews.

Sel-management was the main core theme discussed byparticipants ollowed by support. Management o symptomsand overall knowledge to the condition were almost equallyreerred to with rehabilitation methods the second last mosttalked about area. Each o these categories was urther renedinto various subthemes as outlined inable .

.. Knowledge o the Condition. Participants distinguishedbetween early stage knowledge immediately afer diagnosisand knowledge obtained rom years o living with thecondition.

FG: In the beginning you would just have got itrom a consultant or the doctorprobably lookedup the net afer that.

A distinct lack o online inormation related specicallyto the Irish context was reported and also inormation wasscattered across various sites rather than one site covering allareas o the condition effectively.

Ive been on the British Lung Foundation anddifferent sites on the Internet but they do not givea proper breakdown o things. And most o itis American, which is different to us, they havedifferent acilities to use and they call things adifferent name and you know it makes lie a bit


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: Focus group participant prole.

Participants ()

Gender breakdown % male, % emale

Mean Standard deviation Range

Average age .

BMI . . ..

Medical coverage

Have complete medical cards (%)

Covered by medical card or GP consultations (%)

Covered or medications and prescriptions (%)

Covered by private health insurance in their own name (%)

Covered through a amily member (%)

Past medical historybreakdown (%)

IA/stroke (%)

Heart disease (%)

Hypertension (%)

Diabetes (%)

High cholesterol (%)

Anxiety and depression (%)

Other (%)

Accommodation

support (%) Lived alone (%); lived with nondependents (%); lived with dependents (%)Smoking cessation(%)

Did smoke but have quit (%); still smoke (%); nonresponders (%)

Perceived healthstatus (%)

Fair (%); average (%); poor (%); good (%)

Independence rating(%)

Required some assistance (%); ully independent (%); nonresponders (%)

Carer support (%) Spouse (%); children (.%); riend (.%); partner (.%); other (.%);

remaindernonrespondents

Obtaininginormation (%)

Books/newspapers/magazines (%); Internet (.%); Digital Recordings (%);health proessionals (%); alternative sources (%)

Condence insel-management (%)

Yes (%); no (%)

IC use (%) Standard mobile phone (%); smart phone (%); desktop home computer (%);laptop (%)

Internet connectivity(%)

Have access to Internet based resources (%); have access to an Internetconnection (%); use Internet daily (%); use Internet a ew times a week (%);use Internet a ew times per month (%)

Condence in ICuse (%)

Fully condent (%); partially condent (%); neutral (.%); not condent(%); nonrespondents (%)

more difficult. You cannot do the same things asthey do because we havent got it, we might notunderstand the jargon you know, they talk a lotabout medi-care which we havent got. (DE)

.. Symptoms. Participants reported key subthemes inrelation to the symptoms which were psychological symp-toms, breathing difficulties, inections,symptom triggers, andrelationship o symptoms with existing comorbidities. Psy-chological symptoms were broken down into key branches:depression, isolation, rustration, embarrassment, and anger.

FG: You do eel isolated, when your rst given,told the news I mean I just wouldnt accept it atall. . .and that just led to depression, just couldntcope.

Patients who commented that they did not eel depressedalso commented on eeling ed up, worthless, thinking

o euthanasia, disappointed, browned off, being vexed atwhy they got this, having a lack o motivation, and littlejoyulness.

Participants remarked that when breathing was good par-ticipants were optimistic, calm, and positive. I breathing was

poor participants reported being conscious o the condition,struggling, panicking, gasping or air, and being rustrated.

FG: Te shortness o breath in everything youdo, just normal things like showering can be very

rustrating.

... Sel-Management. Sel-management was the most re-erenced topic o conversation amongst both the ocus groupsand interviewees. Results produced a our-way interlogicalmodel to patients views o COPD sel-management; i onearea was positively affected, then all other areas replicated apositive outcome. Te areas o breathing, unctional, social,


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Oxygen use, inhaleruse, breathingtechniques, sleeping,relaxation, managingattacks

Conserving energy,maintainingindependence, pacing

Travel, employment,driving, hobbies, nancialplanning

Motivation, coping,dealing with guilt,improving condence,being optimistic andpositive

Psychologicalmanagement

Breathingmanagement

Socialmanagement

Functionalmanagement

abilities, modifying thehome, usingmedications

F : Four-way interactive structure or sel-management.

Phase 1Literaturereview and

collection ofbaseline data

on participantperspectives

Phase 2

Development

of videos-

content based

on data from

Phase 1

Phase 3Follow-up

interviews for

userperspectives on

videos

Phase 4Final stage of

videodevelopmentand editing

based on datafrom Phase 3

F : Action research process.

: Six core categories and subthemes.

Core theme

KnowledgeKnowledge o the condition; knowledgeo diagnosis; knowledge o the cause;awareness o COPD; stigma

SymptomsPsychological; breathing related;inections; associated comorbidities andsymptom triggers

Rehabilitation Exercise; diet; smoking cessation; medical

rehabilitation (including pulmonary)

Sel-management(practice andstrategies)

Breathing related; unctionalmanagement; psychological; socialmanagement

SupportHealth proessional; peer support; riendsand amily; community and socialsupport

echnology use Internet; computers; videos; mobile

phones; tablets

and psychological management (Figure ) were seen as nec-essary to holistically sel-manage in a primary care context.

BS: Te rst time I was told when I was doingthe rehab program, that I needed to go on oxygenI was absolutely devastated because I thought how

in the name o God am I going to live my lie onoxygen. And I was reallydownin the dumps aboutit until I kind o got used to the idea. And then Isaid you know well i it helps, i it makes lie easier,now it does not stop me getting out o breath butit helps me recover my breath quicker.

Functional management practices amongst participantsin this study ocused on the dispensation, conservation, andregulation o energy levels in order to maintain indepen-dence, which was reerenced in relation to the ability toperorm activities o daily living and social activities such asgoing to the local shop or cooking a meal.

FG: I I do decide to cut the grass mysel and itsonly a small bit o grass Id only do hal o it andId have to leave it and come in and go out maybein an hour later to nish it. I wouldnt have theenergy to do it all in the one.

iredness and weakness associated with a lack oenergy increased negative psychological responses to sel-management.

FG: It affects your social end o it, because youjust do not have the energy, you know i theressomething going on and you are not eeling greatwell you just have to pass on it, you know.


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Te psychological processes behind COPD sel-management revealed core areas o importance orparticipants. Tese areas were patient motivation, copingability/response, optimism or positivity, overcoming guilt,and condence in sel-management. Motivation was the mostcommented on area o importance reerenced by participants

ollowed closely by development o coping responses.Participants elt daily motivation to sel-manage was difficultwhen they were eeling low or depressed, especially or thosewho were more socially isolated. Motivation was particularlydifficult with regard to developing an exercise routine.

Also very important and others have said it too,is to motivate yoursel to do things. Tat can bedifficult at times especially i you are eeling a bitsorry or yoursel which you can be rom time totime. (FG)

Peer and amily support appeared to be important inimproving motivational drives to sel-management.

I set up a support group and rom meeting thosepeople at the support groups and I helped with aew support groups now and that gives me a senseo purpose or reason to do things. (ML)

Learning to accept and live with the condition wasreerenced as key to participants ability to cope; participantscomment regularly that dwelling on their condition had anextremely negative impact on their motivation and con-dence to sel-manage.

We all adjust to a different quality o lie, evenwith age, its amazing . . . and my quality o lie

compared to whatit used to be is whatmost peopleconsider to be pretty awul but I do not, Im happywith what I am able to do and I do it. (MA)

Te nal subbranch to the psychological component osel-management was overcoming guilt. Participants almostexclusively elt guilt or their diagnosis and development othe condition. Te oundation o this guilt was linked toregrets about previous behaviors such as smoking, whichhave been reported as a key to COPD onset. A consensus didemerge that their condition did not warrant sympathy due tothe perception that the cause was sel-inicted.

I elt guilt and eel slightly that my condition is my

own ault. And I have a huge guilt trip about that.(FG)

Condence appeared linked to perceived independenceas a key determinate o successul sel-management.

Tats all part and parcel o your condence soi you are independent you are going to have thecondence to go out and do exercises or whatever.(FG)

Participantsdiscussed major areaso concern in relationto social activities; these include ability to drive, employment,hobbies, nancial issues, and travel. Overall participants elt

that compared to prediagnosis their travel was now restrictedand nonspontaneous particularly or those who requiredcontinuous oxygen therapy and needed to carry an oxygentank.

DE: I I go away Ive got to have the c-papmachine, the nebulizer and the portable oxygen

concentrator. I mean that takes up a suitcase, youget all that lot together. So I cannot travel lightanymore. Tat was my rst gut reaction was ohno Im going to be on this or the rest o my lienow.

Additional problems associated with participant engage-ment in short-term travel included nancial costs to uel orpublic transport and the psychological eeling that they wererestricting others enjoyment.

Personal hobbies play an important role in maintainingcondence and independence as part o a social based sel-management ramework in COPD.

Some nights I go and I might not get up and danceat all. . .i they are ast theres no way I could dothem. But even i I do not do a dance Im stillkeeping in touch with the riends that I made atthe dancing over the years. (BE)

Compensating or activities no longer possible is alsocentral to participant coping strategies. Due to physicallimitations several participants optimized current abilitiesand substituted new hobbies and practices.

I just sit back and relax, no good getting annoyedabout it, just take it, sit back and read the paper,turn on my wireless and listen to a bit o music,

you know. (JO)

Te loss o employment was devastating or youngerparticipants in this study and contributed to decreased con-dence in sel-managing. Participants commented on wishingto go back to work, while simultaneously acknowledgingthat the physical limitations and uncertainty o their illnessprogression would not allow them to do so.

I would love to go back to work, I would lovethe purposeulness o it and the reedom o beingable to earn your own money. I mean thats alwaysbeen, Ive always been to work up until I got theseverity o this . . . afer that I did not eel like I

could go to work afer that, kind o knocked mycondence a bit I suppose. (DE)

All participants received xed income benets and/or apension as their primary income and commented on thedifficulty o living on a minimal budget that does not provideexibility to support areas o change or the participantoutside o daily living essentials.

Im ortunate my limited income just about coverswhatI have to do but it does not leave anything orholidays or anything out o the ordinary. . . I mustadmit I would like a holiday, that is one thing Ireally miss. (DE)


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Rehabilitation was reerenced times compared to sel-management at . Four areas o rehabilitation, exercise,smoking cessation, medical rehabilitation (including pul-monary rehabilitation clinics), and diet, were reerenced byparticipants in this study.

I keep active. It can be tough at times but it has

to be done. And the more you push yoursel thebetter you eel anyway. . .I can see the difference;Im that little bit more ree. I can walk that littlebit better. (ML)

All participants consented that smoking contributed tothe development o their condition and cessation o smokingwas essential to rehabilitation and sel-management strate-gies.

I should have stopped, I did not, I kept smoking. . .even when I was on the inhalers, even on thatI used to smoke. I smoked until I couldnt smoke.(JO)

... Support. Support was the second most reerenced areao concern or participants in this study ( reerences) withhealth proessional support, peer support, riends and amily,and community/social support reerenced in descendingorder.

FG: When youre in the system, in the hospitalwith the doctors and that and the nurses, theyrebrilliant.

FG: On the rehab course you get not just theproper exercises or your lungs but you also get

a lot o education and a lot o inormation onthe condition and also about the medication andall that sort o thing which you wouldnt pick upreally.

FG: Once they understand it, once they acceptyou know that this is it and this is you or the resto your lie. I nd my amily is great now with me,I go everywhere with them.

... echnology. echnologies used by participants as parto their current sel-management practices included theInternet (most commonly reerenced), desktop/laptop com-

puter, videos, and mobile phone. Te Internet was labeledseparately rom computers due to its availability on multipledevices and platorms. Fluency and usage levels variedamongst participants with % o individuals having accessto Internet based acilities. Internet usage ocused on e-mail, resourcing knowledge, andusing Skype, particularly orindividuals isolated or with distant relations.

DE: Another thing about people on the internetyou know at least i you look up what other peopleare going through you think oh Im not that bador you know it can make lie a bit more bearablebecause during winter months Im more or lessindoors.

8. Discussion

International published trials on COPD sel-management(including IC use) suggest that sel-management is linkedto improved health status, reduced emergency visits tohealth proessionals, and reduced hospitalizations [].A Cochrane systematic review o controlled trials onsel-management education in patients with COPD stipu-lated that it is not clear what inuence sel-managementeducation has on COPD patients. While sel-managementreduces hospitalization, data is insufficient to ormulate clearrecommendations regarding what should comprise contentin a sel-management educational programme, to integrateskills into everyday patient lie (e.g., diet, exercise, smokingcessation, and sleep habits) and how best this should bedisseminated using new technology [].

Developing a model to promote healthy liestyle changeafer diagnosis o COPD is an extremely detailed task. Core tothe development o this model is the integration o structuresor increased engagement, improved patient motivation, and

sel-efficacy. Tis study demonstrates that detailed analy-sis o patient perspectives on their condition and needsor sel-management is essential and should underpin thedevelopment o any ramework, materials, and technology.Inclusion o users in the process o design, development,and usability o a technology based sel-management pro-gramme ensures a more positive user experience. Accordingto NICE guidelines the three key requirements or highquality care include effectiveness, saety, and user experience.Involvement o users in the design o a service or productopens up opportunities or design, unction, and saety issuesthat may have been otherwise unapparent []. Te actionresearch design principles that guided this project provided

an effective ramework or eliciting user perspective data,applying it to technology in a patient centric manner andtesting its relevance to the user. Tis type o approach mayresult in increased and sustained user compliance.

Knowledge o COPD at diagnosis appears critical to theoutlook and coping responses invoked by patients. imeshould be taken by health proessionals to ensure patients arecondent in their knowledge o COPD as soon as possibleollowing diagnosis and commencement o treatment. Sitesor dissemination material should be tailored to various sever-ity groups in COPD; or example, those with mild/moderatedisease appear not to engage with web sites showing thesevere aspects o the condition. Peer support and learning

should be ideally constructed within the cultural and healthsystem in which a patient resides. Participants in this studyexpressed rustration that available online peer resourceswere developed outside o the Irishcontext, particularly in theUnited States, reerencing services and situations unamiliarto their sel-management situation in Ireland.

Psychological related symptoms to living with COPDwere commonly reerenced areas in this study, supportingprevious research suggesting that emotional status deter-mines health status to a greater extent than lung unction orexercise tests in COPD patients []. Participants in this studyperceived social and peer support as central to alleviatingnegative psychological symptoms such as depression. Future


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research into improving the social support structure oindividuals with COPD is recommended. In assessing psy-chological symptoms o COPD it is important to also reviewtheir level o social and peer support. Participant responsesin this study suggest that depression amongst individualsin Ireland with COPD may be a silent or underreported

phenomenon. Future research is recommended into thispotential phenomenon as positive psychological perceptionsarekey to successul behavioralchange and sel-management.

Overall participants in this study believe that sel-management is a unique and subjective process that onelearns based on their personal experience o COPD. Keyactions participants used in sel-management ocused aroundconserving energy, seeking support, avoiding triggers, andbeing motivated to change their liestyle. Uncertaintyamongst participants in relation to the progression o theirconditionmeansplanningon a day-to-day basis only with keymotivational drives to maintaining health orientated aroundamily/social lie and maintaining independence. Bartlett etal. [] had similar ndings in relation to the importanceo planning daily goals or successul sel-management. Indealing with triggers to symptom exacerbations partici-pants revealed a willingness to modiy behavior and sustaindaily techniques to anticipate and deal with changes in theircondition. Similar to Dinesen et al. this project recommendsthat designing a ramework to allow individuals to share thesetechniques via peer learning online would be off benet inpotential behavioral change and sel-management on a dailybasis [].

Participant responses in this study revealed a poten-tial logical interrelated sel-management model based onunction, breathing, psychological, and social management,which requires urther detailed research (Figure ). In orderto support and acilitate effective sel-management andbehavioral change in patients with COPD, all areas o thismodel need to be addressed when developing programmes.

Combining educational learning materials on the useo assistive breathing technologies with correct relaxationand breathing techniques appears crucial to the oundationo an effective breathing management behavioral changeprogramme. Exercise is essential to patient rehabilitation andbehavioral change and when constructing an exercise basedbehavioral change programme two key elements need tobe incorporated. Firstly, an extensive educational and illus-trative component is required to acilitate effective learningo required exercises. Secondly, a motivational component

needs to be included based on learning via social contactwith peers, amily, and riends to encourage and supportbehavioral change, or example, ace to ace contact, e-mails,or phone call. Programmes that provide both elements orpatients with COPD are very effective but limited [].

Participantswho reported guilt eelings were less inclinedto seek support when needed. Tis may hamper effectiverehabilitation and sel-management and is an issue that needsto be addressed as part o the patient rehabilitation processas patients who do not seek adequate support due to a guiltcomplex may have their recovery stied and experiencedecreased quality o lie. Methods to overcome eelings oguilt should be incorporated in all behavioral change or

psychoeducational sel-management programmes as theseeelings may prevent patients seeking support. Tis continuedsubtheme o social support avoidance due to eelings o guiltneeds to be examined and treated within the wider COPDpatient population.

Te symbolism o oxygen use with loss o independence

is a major worry or individuals with COPD. Addressing thiswith patients at an early stage in diagnosis is important aspart o a liestyle change process that acilitates successulsel-management behaviors. Practical advice on issues liketravelling long and short distances with portable oxygen canhelp patients adapt more easily to living with COPD. Anybehavioral change program to improve breathing apparatususe needs to address individuals issues o using apparatus inpublic, teach appropriate breathing techniques to supplementapparatus use and breathing regulation, and also teach relax-ation techniques to effectively regulate breathing techniquesand apparatus use especially in stressul or panic situations.

When developing and recommending sel-managementprogrammes, nancial costs also need to be taken intoconsideration as most patients will be on xed income healthbenets and/or pension supports which may not be sufficientto nance liestyle/home modications. Sel-managementprogrammes should include inormation on all potentialnancial and health assistance subsidies available.

Augmenting sel-efficacy is important in determiningwhich tasks an individual willperorm or avoidbased on levelo knowledge. Tis process o knowledge empowerment hasbeen seen to assist in developing patient sel-efficacy to makerelevant decisions in sel-management[]. Sel-efficacy playsa major role in explaining health related behaviors [] andthus it is essential that it is actored into any outputs roma sel-management or behavioral change programme. Avail-able studies show signicant positive effects or sel-efficacyand behavioral change ollowing a structured educationalprogramme [, ] with improved sel-efficacy noted toimprove and increase engagement with particular tasks [].A recent pilot RC has demonstrated that compliance withbehavior change programmes using technology was ound tobe high which resulted in increased benets in terms o sel-management [].

Commonly adopted behavioral change models used inCOPD sel-management based programmes include theranstheoretical Model (M) which concentrates on pro-cesses o change and support required to adopt a healthierliestyle []. Other social cognition and health belie models

used in the study o health related behaviors in COPDinclude the Teory o Planned Behavior; the Teory o Rea-soned Action; the Health Belie Model, the Attitude-SocialInuence-Efficacy Model [] and the Sel-Efficacy Model[]. Tese models ocus primarily on patient sel-efficacy,giving the patient condence to carry out a behavior neces-sary to reach a desired goal. Key to achieving sel-efficacy isthe modeling o patient belies and perceptions around theircondition and potential recovery. Te use o action researchas a ramework in this project demonstrates its easibilityand effectiveness in ensuring patient belies/perceptions ormthe basis or a technological approach to acilitate sel-management in COPD.


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Te authors o this study recommend urther investi-gation into relationships between perceived psychologicalsel-management o those with COPD and the unctionalbased selection, optimization, and compensation theory osuccessul ageing. In-depth knowledge o these processeswith the COPD population may be o benet when tailoring

a sel-management program to this group.A key strength o this study is its demonstration inthe easibility and importance o codevelopment/design otechnology based programmes or people with COPD, inorder to ensure that content is relevant, easy to use, and needsbased. Tis will improve compliance and ultimately increasebehavioural change and sel-management.

9. Limitations

Recruitment o participants was solely rom COPD supportgroups. Individuals in these groups were more proactivein researching and promoting COPD knowledge, liestyle

changes, and societal awareness.

Conflict of Interests

Te authors declare that there is no conict o interests.

Acknowledgments

Te authors wish to thank the ollowing or their unding,support, and contribution: the RIL Consortium (echnol-ogy Research or Independent Living), Intel Ireland Ltd., andCOPD support groups in Bray and Sligo.

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Using Action Research and Peer Perspectives to Develop Technology That Facilitates Behavioral Change...

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