Monash Bioethics Review Vol. 22 No. 1 63 Ethics Committee Supplement

Benefits of Participation in aLongitudinal Qualitative ResearchStudyPAM McGRATHSchool of Hiatory, PhUosophy, Religion and ClaasicaUniversity of Queensland

ABSTRACTAlthough mainstream research institutions and health careorganisations are now starting to acknowledge the importantcontribution ofqualitative research, there are still many obstaclesto obtaining funding. Consequently, at all points along thecontinuum of obtaining funds, enrolling participants andconducting the research, qualitative researchers will benefit frombeing able to refer to, or reference, a body ofempirical knowledgethat addresses ethical issues raised by those who haveresponsibility for decision-making about the implementation ofresearch proposals. This article has been written with thisstrategy in mind. One such ethical issue is a concern about theimpact on participants of being involved in qualitative studieswhen they are in a vulnerable state from a distressing lifeexperience. This article provides empirical data that describes thebenefits associated with qualitative research process for parentsenrolled in a longitudinal study looking at the issues associatedwith the diagnosis and treatment for paediatric haematologicalmalignancies. The empirical findings affirm the significantbeneficial contribution that qualitative research can make to thelives of those coping with an extremely challenging health caresituation.

In recent decades, qualitative methodologies have made anincreasingly significant contribution to health care research. As Morselexplains, qualitative methods offer alternative approaches to analysis;serve a range of disciplinary perspectives, assumptions and agendas;offer a medium for exploring varied levels of analysis; and allow thedevelopment of a necessary level of conceptualisation of results.However, although mainstream research institutions and health careorganisations are now starting to acknowledge the importantcontribution of qualitative research, there are still many obstacles toobtaining funding 2.

Qualitative research is still predominantly perceived as the 'softoption' in a highly competitive health care research funding system,traditionally dominated by the biomedical perspective that reinforcespositivist scientific methodologies 3.4.5. In Australia, the marginalisationof qualitative research is situated in the context of the self-perpetuating

Monash Bioethics Review Vol. 22 No. 1 64 Ethics Committee Supplementgrant-giving process where grants are awarded by authorities usingcriteria that prioritise reductionist science 6 . Qualitative researchersfind it difficult to obtain funds because of the policy of using trackrecords, which means that well-established positivist scientificprograms are more likely to be funded at the expense of fledgling ortentative qualitative programs in innovative areas 7. Research is stillmore likely to be accepted if it is expressed in numbers 8.

Writing grant submissions, responding to queries from peerreview, and performing during panel interviews can be a challenging,and at times unfair, process. Qualitative researchers all too often haveto reply to questions inappropriately framed within a quantitativehypothetico-deductive perspective. Uninformed about qualitativeresearch methodologies, interview panels from mainstream grantingbodies often voice doubts about issues in relation to the 'subjectivity' ofthe data", concerns about 'val idity' I", problems associated with rigour inresearch 8, and the worries about the vagueness of not being able topre-specify or limit the number of variables for data collection 11. Forthose studying vulnerable or stressed populations, those concerns canbe exacerbated by the review panel's concerns about the intrusivenessof methods such as in-depth interviews.

Obtaining the funds for research is but one of the obstacles toengaging in qualitative research. One of the most difficult hurdles toovercome in conducting research using face to face interviews isgaining access to suitable participants 12. As with interview panelsfrom granting bodies, health care organisations when considering thesuitability of participating in research often express considerableconcerns about methodological issues. In particular, ethical worries arevoiced about the possible harm to participants of in-depth interviewingon sensitive issues.

It is thus important for qualitative researchers to have a body ofempirical evidence to substantiate their claims about the benefits oftheir work. At all points along the continuum of obtaining funds,enrolling participants and conducting the research, qualitativeresearchers will benefit from being able to refer to, or reference, a bodyof knowledge that address issues raised by those who haveresponsibility for decision-making about the implementation ofresearch proposals. To date, the literature addresses the issue throughthe reflective writing of researchers rather than from empirical researchfocusing on the experience of research participants. Access to a broadrange of empirically based findings on meta-research, that is researchon the process of research, would go some way to assisting qualitativeresearchers in gaining access to funds and implementing theirprograms. This article has been written with this strategy in mind, asit provides empirical data on one frequently-asked and vexed ethicalquestion in relation to qualitative research. This is the question as towhether in-depth interviewing with vulnerable and stressedparticipants during a difficult time in their lives is likely to be aharmful experience. The question was asked of a group of parentsenrolled in a longitudinal study looking at the issues associated withthe diagnosis of and treatment for paediatric haematological

Monash Bioethics Review Vol. 22 No. 1 65 Ethics Committee Supplementmalignancies. The empirical findings affirm the significant beneficialcontribution that qualitative research can make to the lives of thosecoping with an extremely challenging health care situation.

THE RESEARCHThe data for this article was gathered from the first stage of a

longitudinal study of the experience of treatment for paediatrichaematology from the perspective of the child, his/her parents and wellsiblings. The Brisbane Royal Children's Hospital Foundation and theFinancial Markets Foundation for Children have jointly funded thestudy. The multi-disciplinary study is conducted by a psycho-socialresearcher at the University of Queensland (UQ) in association withresearch clinicians from the Haematology and Oncology Units of theBrisbane, Royal Children's Hospital (RCH) and the Brisbane, MaterChildren's Hospital (MCH).

Ethical consent to conduct the study was obtained from the UQUniversity Ethics Committee, the RCH and MCH ethics committee.Participants were verbally informed of their rights in research andwritten consent was obtained for participation in the research.

Target PopulationConsecutive patients, aged from birth to sixteen years, who

have been diagnosed with ALL (Acute Lymphoblastic Leukaemia) andrelated disorders enrolled at the Banksia Ward at the Royal Children'sHospital (RCH) and the Mater Children's Hospital (MCH) have beenenrolled in the study. During the initial stage of treatment the parentsand siblings of these children were also approached with regard toparticipation in the research. The fmdings presented cover interviewswith the parents of the first sixteen consecutively enrolled children witha haematological malignancy. Of the initial seventeen familiesapproached, only one declined giving a response rate of ninety-fourpercent (n=16; 94.1%).

DemographicsThe child patients (n=16) recruited ranged in age from eight

months to fourteen years and males predominated (male n=9; femalen=7). Eight of the children were diagnosed with standard risk ALL,four had high risk ALL, two were diagnosed with Acute MyeloidLeukaemia (AML), one with B Cell Lymphoma and one with Hodgkin'sLymphoma.

All of the patients, except one, were from two-parent families.From the sixteen families, all of the mothers and four of the fathersparticipated in the research. The parents' ages ranged from thirty-oneto forty-four. With the exception of one, all parents had otherdependents (eight other dependents, n=1; three other dependent, n=3;two other dependents, n=3; one other dependent, n=9) who ranged inages from four months to twenty-seven years. Five of the parents werereceiving pensions, and seven had their income supplemented with aCarer's Allowance. The mothers were previously in either full (n=3) orpart (n=4) time employment but ceased due to the child's illness or

Monash Bioethics Review Vol. 22 No. 1 66 Ethics Committee Supplementwere engaged full time in home duties (n=9). Many of the families(n= 11; 68.75%) had to relocate to the metropolitan centre for specialisttreatment.

MethodologyThe experience of treatment is documented through qualitative

research using open-ended interviews with the child patients, theirparents and well siblings at five key points in the treatment trajectory.As phenomenological research the study design is based on a respectfor the knowledge and insights of participants: the raison d 'etre being todocument the participants' experiences to deepen our collectiveunderstanding of diagnosis and treatment. Such research is based onan iterative process of active listening, where the questions posited asimportant can change over time depending on the insights provided bythe participants. Such a process contrasts to researcher driven closureof the pre-formed structured questionnaire of hypethetico-deductiveresearch. The researcher's challenge is to 'bracket' their originalassumptions to ensure they are open to responding to the insights ofparticipants. Thus, phenomenological research is 'u ser friendly' as it isbased on principles of active listening that respectfully place theparticipant at the centre of the research process.

The interviews were conducted by a psycho-social researcherwith a counselling background and many years experience workingwith families coping with a member with a haematological malignancy.The time and location of the interviews were of the participants'choosing, which sometimes meant long waits at the hospital for parentswho were delayed because of unexpected events. While the researcherwas interviewing the parents, the research assistant not onlyin terviewed the child but also kept them occupied with art activitiesand games. Such team work gave the parents the opportunity to talkwhile their child was being occupied and looked after. All initialinterviews were face -to-face to allow the families to become acquaintedwith the interviewer. Once the relationship was established with thefamilies, the later interviews when the families had returned home wereconducted by speaker telephone. The interviews were open-ended andfocused on the experience of treatment as it impacts on all familymembers. The parents were encourage to tell their story in their ownway and at their own pace. As a five year longitudinal study, it providedthe opportunity for a research relationship to build over time and forthe researcher to be available to share the full treatment journey.

The findings presented in this article are from a promptquestion during the second interview with the parents of the firstsixteen consecutively enrolled child patients.

As this was the second interview (and thus participants hadsome experience with being in research), a prompt question wasroutinely asked to all participants encouraging them to talk about theirexperience of being in the research. The prompt question was 'Whathas been your experience of being involved in this research?'

Qualitative analysis is based on the principle of saturation ofdata, that is , common or reliable themes emerge when a number of

Monash Bioethics Review Vol. 22 No. 1 67 Ethics Committee Supplementparticipants say the same thing 13. By the time of the third or fourthinterview parents were reporting very similar issues. However, as alongitudinal study there was opportunity to follow up consecutiveenrolments over the first year to affirm the original themes.Consequently, at the point of the twentieth interview a high level ofconfidence had been achieved as to the reliability of the data that wascollected. The similarity of the data collected prompted closure as freshinsights were no longer emerging.

The interviews were audio-recorded and transcribed verbatim.The language texts were then entered into the NUD*IST (QSR Non­numerical Unstructured Data Indexing Searching and Theorising 4), acomputer program designed to aid users in handling large amounts ofqualitative data by supporting the process of coding and indexing. Thestatements of the participants were analysed thematically. Aphenomenological approach was taken to the recording and analysis ofthe data. All of the participants' comments were coded into 'free nodes',i.e. files used in coding to store the texts once sorted. The list of 'freenodes' was then organised under thematic headings. An experiencedqualitative researcher established the coding. The project officer, aChild Life Specialist who had intimate knowledge of the interviewsgained through transcribing, validated the coding. The free nodesrelating to the participants' experience in research are presented here.

FINDINGSComfortable with talking - not stressfulParticipants described the experience in positive terms, for example:

'A very positive experience.''I don't have a problem with it.''I don't mind talking at all.'

When asked if any aspect of the experience was in any waydistressing, many of the participants indicated clearly, concisely andspecifically that their involvement in the research felt neither stressfulnor intrusive. These parents emphasised that they felt comfortable intalking about their situation, as can be seen by the following examples:

'I don't find it stressful at all. No. It is not a problem for me totalk.''I don't think it is stressful for one minute.''No I don't find it invasive or distressing.''Yes well I think it's nice to talk about it actually. Yeah, itdoesn't worry me. I am quite comfortable with it.''I don't find it difficult at all .'

Some were philosophical, indicating that the interviews hadpotential to be painful because the focus is on their difficult reality, butas they were able to deal with this it was not distressing:

'I don't find it stressful one bit, you know, because what'shappened has just happened. And that is a fact. And it's notsort of like scary or anything and we've dealt with it . And we'vekept going.'

Monash Bioethics Review Vol. 22 No. 1 68 Ethics Committee Supplement'It is painful, but I mean it's our life. Our life is painful now.''I don't think it's painful sure it touches on some emotionaltopics, but we do that every day.'

One parent pointed out philosophically and with humour, thatin comparison to their experience with diagnosis and treatment,nothing could rate as stressful:

'Well for me I didn't find it stressful. I can't sort of see how itwould be stressful for me. It was like I'd already been told theworst thing I could ever hear. You know. There was nothing thatcame after it that was going to be (laugh) too bad.'

Another noted that as a family they were already publiclytalking about their situation so the participation in the research wasjust an extension of that experience:

'Well I took a pretty open stance early on anyway with obviouslygoing public and making a commercial and all that sort of stuff.So I don't mind.'

Nervousness about participationSome of the participants clearly indicated that they were not

nervous at all about participating in the research with statements suchas, 'No, not even ... first.'

Others reported feeling initial nervousness, that dissipated oncethey had been involved in the research:

'In the beginning when we were asked I went, Oh, I don't know.And I thought, Well what harm can it do? And, no it hasn'tworried me . It's been quite good actually.''I, even right up till the day I sat and spoke (felt a bit nervous). Ithought, Oh what are they going to ask us? (So it isnervousness about not knowing what it's going to be like, butonce you have the experience then it's not so scary?) That'sright.'

Good to have opportunity to talkParticipants indicated that involvement in the study was not

only non-stressing but also actually positive. It was considered abenefit to have the opportunity to talk to someone about the situation:

'I like to talk about it.''I think it's good to talk about it .''It is good to talk. Well I find that.''I think we got a lot of positives out of it. Just talking about it .'

Talking to others was seen as a positive affect-altering experience:'It is good to share with other people. We can talk for ages onthe phone (with other mothers going through the same thing)and you get off the phone and you think, Oh I don't feel toobad.''It is always good talking about it actually. I feel better after I'vetold someone a bit more about it .'

Monash Bioethics Review Vol. 22 No. 1 69 Ethics Committee SupplementParticipants reported that the opportunity to talk allowed them torelease pent-up emotions:

'For me it's better for me to go in the research because I cantalk. I can say my feelings. I need to let it go.''It is good for you. You do not need to be keeping ... ah, what doyou call it? Not to say anything. You need to say things becauseyou need to let your feelings go. When I open my feelings tosomebody it relieves, it's good to communicate.'

The release of pent up emotions was seen to help deflect the likelihoodof the parent imposing negative feelings on the sick child:

'And like, because some things obviously that I tell you I mightbe dwelling on in the hospital. And then I've been able to voicethem with someone. It's just so it's not going to have any directeffect on my baby (laugh). And in a way I can feel I am alrightwith that.'

This release of thoughts and emotions was seen as beneficial on aphysical as well as emotional level:

'I feel better after I have told someone a bit more about it. Ithink you think more about it when you're actually tellingsomeone. If you hear me 'urn and ah' for ten seconds to give youan answer that means I guess that I'm dragging out things andairing them. I don't know how it works. Releases some sort ofendorphin I'm sure.'

Sharing the journey helps with the copingSharing the experience of diagnosis and treatment through

talking to a researcher over the full length of the journey was reportedto be a supportive process that helped the parents cope. The parentsspoke at length about the difficulty they had of sharing this experiencewith others and so the research relationship became an importantspace meeting their needs. The difficulty of sharing with othersresulted from a reluctance to burden close friends and family with theongoing drama of the medical crisis:

'I don't lay it all out on the line (when talking to friends andfamily). Because you can't. People have their own problems andthey don't want to hear all of that everyday.... Generally youdon't say what it is really like . Because you know you reallycan't. I don't think you can lay it out. You might be able to tellsomeone once. But you can't sort of all the time. That is whyspeaking about it and finding out that other people have similarthings happen to them. That's rather reassuring I think.'

It was also noted that even close friends would have difficultyunderstanding or identifying with the situation:

'I have a friend and she's so supportive and sometimes says Iwouldn't know what you're going through.'

Monash Bioethics Review Vol. 22 No. 1 70 Ethics Committee SupplementParents noted that the opportunity to talk realistically and

honestly about their situation was greatly appreciated in the hospitalsetting where there is great pressure to maintain a positive and braveface:

'And you didn't actually tell them (the parents) to go and put asmile on your face . (The pressure to be positive) that's a way ofnot dealing with it. And I know exactly why they're doing it andthat is what makes me very intolerant. And I have become veryintolerant. '

Many of the families (68.75%) had to relocate for specialisttreatment and so for them the opportunity to talk to the researcherprovided a support network both during the stay at the metropolitanhospital and later as an ongoing connection with the hospital whenthey returned home:

'No, not (invasive) at all. Not at all. Its good even to, you know,stay in touch with someone from Brisbane as well. Because Imean especially for me - like you know, sent down there afterliving in this country town all my life. You know it was reallyoverwhelming. And like just to have someone's support andsomeone to stay in touch with, I think is really good. It's acommunication thing, and it's just like this support network.You know, no, I think it is great.'

Parents indicated that the opportunity to talk provided themwith a welcome personal space to learn more about how both they andtheir partner were dealing with the medical crisis:

'Enjoyable and it's especially given us something to talk aboutlater on too. I might say I didn't know you really thought this(laugh).'

Good to know others are having the same experienceThe sharing was reported to have helped to normalise feelings

and thus reduced the sense of aloneness:'I think too, urn, like with talking to you guys it helps me a bittoo. Like I say rah, rah and you say, Oh, yes, other people feellike that. Well, you think, Oh thank goodness I'm not alone. I'mnot making things up .. . And in a way I can think I feel alrightwith that (laugh).'

Parents referred to the need to conform or feel normal. Theyindicated that they were in need of some sort of 'yard stick' as theirlives were now so different to previously and so they were no longerable to compare themselves to others:

'I think, I guess, you are. some sort of a yard stick. If I say we doblah, blah, blah and you say all the people say that or hey that'sinteresting no one else has ever said that. Then I guess that's ahelp.''We all want to conform somehow to our path I guess.'

Monash Bioethics Review Vol. 22 No. 1 71 Ethics Committee Supplement'I think it is good. You do want to compare notes with otherpeople.''It's nice really, really nice, to hear what other anonymousfamilies that are doing the same thing have been through andhave felt . And urn, you realise that these feelings are normal atthis stage. It is quite comforting to know.'

Altruistic desire to helpAlthough the parents spoke in depth about the important

personal gains obtained from the research process, they indicated thatthe first and foremost thought in their minds in participating was thebenefit it would provide to others. The altruistic desire to help was thefirst issue mentioned by most parents. For some it was simplyexpressed as a desire to be of assistance to others and the associatedsatisfaction of giving:

'You know, whatever you may use it for. I'm quite happy tohelp. ''I feel privileged that I can help out in this area.''And for me to be able to help out with this I feel honoured to bea part of it . That I can actually do something good that wouldhelp somebody else that, you know, is coming along behind me .''I think anything that helps others you bend over backwards todo.''I would do anything to help.''If it's going to help another kiddie or another adult somewheredown the track. I'm all for it.'

For others, this desire to help others was stated to be directlyrelated to an understanding of the hardships involved and theconsequent wish to have this burden lightened for others:

'If something out of this helps somebody else that has to dealwith a situation like this. Then, oh yeah! I'm for anything tohelp anybody else because I know how hard it is myself to cometo this. You know when we were diagnosed I was just blownaway.''I like to think that maybe whatever we're going through isgonna help other people down the track. I guess on the grandscheme of things. If anything can be researched or things canbe found that are going to help the next lot of families copebetter with it, or not have to cope with it. That can only begood.''When we signed up we thought, you know, hey, even if itdoesn't help (our child) in any way it 's gonna help someone elsedown the track.''I think you're doing a wonderful job. And any questions youask and when you want answers it can only go towards helpingsomebody else down the track. I think it's great.''I don't mind one bit. I like to as long as it is going to helpsomeone else. I would do anything to help somebody else copewith this situation.'

Monash Bioethics Review Vol. 22 No. 1 72 Ethics Committee SupplementNeed to help is based on frustration of watching helplessly

The privilege of being able to participate in a project to helpothers was seen as a welcome relief by parents caught in a powerlesssituation. As one participant explained in detail:

'If there is any hope at all of making it better for anyone elsethen I just can't do enough. Because it is such a terrible time.You see the new ones coming in and you want to help them.But at the same time you are busy dealing with your own stuff.You're going through all these different stages yourself. And soyou're trying to help them. And there's not a lot of space to helpthem there anyway. Because they are absolutely in that shockstage themselves. Plus there's nowhere for parents to privatelytalk. There's always someone else around and particularly inthe out-patients ward. There is nowhere for you to go, you sit inthe thoroughfare and you can't go anywhere or do anythingelse. So it's sort of like there's no space where you could havesort of a conversation ... a truthful conversation. You know likewhere you can actually voice your frustration. So I mean for meit was just like a big opportunity to try and help someone else.And the clearer and the more information that I can give you, Ithink you know that is what I am trying to do. So that I canhelp someone who comes along for it to be a little bit better.'

Belief that it does goodThe parents declared a strong confidence that they believed the

project does in fact accomplish good. This benefit is expressed both inrelation to the present:

'And I think it does good.''So I think it is quite good.''I think it's been pretty positive in every way for us.''I think it is wonderful.'

And in relation to the future:'I thought it was wonderful. I think, you know, people will wantthe outcome of everything that's going on . I think it would begreat for people in the future to have something.''Because it's probably about the only thing worthwhile to comeout of it . So if you are able to organise assistance for the nextpoor person down the track as a result of maybe somethingwe've been able to help with. I think well that was a goodoutcome.''Yeah I don't mind if that's the one thing out of all of this is ifsomething good comes out of any or all of this. It's got to be abenefit to someone.'With you guys, it's sort of, you know, anything you do andeverything that we say, it's only going to help someone else youknow down the track. To make something bigger, brighter andbetter than you have already made it for us. So no, I think it isexcellent.'

Monash Bioethics Review Vol. 22 No.1 73 Ethics Committee SupplementCommunication style of researcher

Many of the participants also made comments indicating thatan important reason for their satisfaction with being in the researchwas the communication style of the researcher. The parents indicatedthat the rapport built up with the researcher made them feel at ease,made them feel valued and positive about their ability to cope, andhelped them to put their own situation in the context of the difficultiesothers are experiencing:

'You have made me feel quite at ease.''I know how you work with all the positive reinforcement. I knowit really helps (my wife) and things like that as well. It is nice tohear people saying Oh you are doing really well, all that sort ofstuff too. I mean the way you do it and interview and say thingsback. It works really well.''I don't speak to anybody else, any other outside sort of help orthat. I think you always reward me so positively in what you'resaying.'

An important aspect of the communication between theparticipant and researcher was the affirmation of the parents'experience and the normalising of that experience by reference to thestruggles of others:

'Just even talking to someone like you who even talks to otherpeople. And in actual fact especially when we first spoke at thehouse and I'd say things to you and you'd say oh yeah a lot ofthe other mums have said that. Or I'd tell you something andyou'd say, oh you are doing the right thing so I think we got alot of positives out of it . I came away feeling I was one of themost wonderful parents in the world with that (laugh) .'

Participants expressed a satisfaction with the questions thatwere asked and an appreciation of the process of engaging in dialogue:

'I think it's been very positive for us. And it makes you think.You might ask me questions about things I don't necessarilythink about. And it might make me think about things that Imight not normally bring to the surface myself. So that waythat's good as well cause you know, I'm answering questions formyself, as well as for you.'A father: 'I think the questions asked were pretty well goodenough.'

The privacy and intimacy built up with the researcher was alsoseen as important as the parents wanted stability and theconfidentiality of a single research relationship:

'I don't mind. Actually I find it quite comforting sometimes. Um,just from the fact that its just two of you (the researcher andresearch assistant) . I have met you both and know you andnever have to speak to anybody else. You know like another ...um, somebody that doesn't know me.'

Monash Bioethics Review Vol. 22 No.1 74 Ethics Committee SupplementGood to let people know about the journey

The importance of sharing stories was described as a two wayprocess. The parents reported not only wanting to hear about others'experiences but also wanting to make a contribution through sharingtheir own experience. It was the parents' hope that their own storieswould allow others to feel affirmed in their struggle and normal abouttheir emotions. As the following examples demonstrate this is seen as atype of educational role:

'And if we can help out so that other families coping withleukaemia do not find it as scary as we found it.''It's to me I think an opportunity to share our journey withsomeone who might be able to actually do somethingworthwhile with it .''I find it a whole educational process. I like to tell people aboutit, I think.''It's been good. You know people aren't going to find out thingsif the parents and the patients don't open up and start talking.Yeah, it's been good.'

A sense of choice about participationAnother factor which was seen as influencing the parents'

desire to participate was the respect for choice. As parents felt free tochose whether they participated or not, they felt less nervous aboutbecoming involved:

'Urn, I mean when (my wife) and I discussed it the firstimpression was, Oh are we obligated? And she said no .''And I thought what can they ask? If we don't want to answerwe'll say can we skip that question. I don't want to answer that.''No, no, because it was quite clear that we didn't have toparticipate if we didn't want to . And to some degree we were incontrol.'

Research is ImportantMany of the parents spoke with respect about the fact that the

project was for research. The outcomes of research for children withleukaemia and related disorders were seen as important for the nextgeneration of children.

'It is for research.''I think to myself, wow, all this research they are doing it doesdo good things... You often think, yeah, well, they do goodthings.''So because somebody has gone ahead before us and they'vefollowed their case and worked out what's wrong it's benefitingus. So what is happening with our child will hopefully benefitsomeone else. ''So if it wasn't for the research studies that you guys do, Imean, you know, no one is going to find out things that aregood and things that are bad. And things that help and thingsthat don't. So no, I think you are fantastic.'

Monash Bioethics Review Vol. 22 No. 1 75 Ethics Committee SupplementQualitative research is user friendly

Lastly, it was noted that the process of just talking was 'u ser­friendly.' Participants were not asked to fill out extensive forms and feltit was a personalised process:

'It is not something I've got to be bothered reading a piece ofpaper and filling out. It is so much more personal I think.'

DISCUSSIONThe findings indicate that participating in a longitudinal

qualitative research project for this group of parents with a child with ahaematological disorder is neither distressing nor invasive, but ratheris a very positive experience. The parents indicated that interviewscould be a comfortable experience, even though the subject matterfocuses on the often painful and challenging experience of coping withserious childhood illness. Table 1 summarises the following discussionby outlining the factors that the findings indicate make involvement ina qualitative longitudinal study a positive experience for participants.

Table 1. Factors Contributing to Positive Outcome and HighParticipation RateFactors that • Participants' altruistic desire to benefit othersfacilitate initial • Participants' sense of choice about involvementinvolvement • User-friendly nature of research design

• Participants' belief that research is valuablePositive factors • Expect and respond to initial nervousnessfor interviewers • Make participant(s) feel comfortable

• Emphasise and respect choice about involvement

• Communicate with support and empathy

• Value participants' strengths and ability to cope

• Respect privacy and emphasise confidentiality

• Engage in non-judgemental, active listening

• Be flexible about time and place of interview

• Expect delays and interruptions when planninginterviews

Benefits as • Opportunity to talk to sympathetic listenerperceived by • Intimacy with interviewerparticipants • Release of pent emotions

• Emotional space to share the journey

• Support and ongoing relationship for those awayfrom home

• Normalisation ofexperience

• Reduced sense ofaloneness

• Sense of empowerment for those trapped indisempowered situation

Table 1. Factors Contributing to Positive Outcome and High Participation Rate

Reluctance to participate, an important issue relevant tolongitudinal family research 14 did not surface as a problem in the

Monash Bioethics Review Vol. 22 No.1 76 Ethics Committee Supplementpresent findings. Although some parents did express initialnervousness about participating in the research, most noted they werenot nervous at all about their involvement. Participants expressed anawareness of their autonomous choice in relation to their decision to beinvolved in the research and indicated this choice reduced their anxietyabout participating.

There were a number of important positive aspects ofparticipating in the research that were stated to directly benefit theparents. The opportunity to talk about their situation to a sympatheticlistener and the consequent release of pent-up emotion associated withthis process, were described as therapeutic. The therapeutic benefitswere noted to be both emotional and physical for the parents andafforded some protection to the sick child. Participating in thelongitudinal study was seen as providing an important emotional spacewhere parents could share their journey with a consistent andsympathetic listener. This process was seen as meeting parents' needsin a situation where they felt unable to share their story in any depthwith either family members or friends and were challenged to cope in ahospital setting that was not conducive to the expression of genuinefeelings. It has been demonstrated, elsewhere in relation to traumaresearch, that participants find the immediate distress thataccompanies discussion of painful experiences is outweighed by thebenefits of confiding to a trustworthy other 15.

Many of the families had to relocate for specialist treatment andhence, were away from close contact with their normal supportnetworks. Hence, the relationship with the researcher providesemotional support during the metropolitan stay and a continuousfollow-up on returning home. The appreciation of the opportunity totalk with a sympathetic listener over time has been noted by otherresearchers as an important dimension to qualitative longitudinalresearch 16 .

The parents spoke at length about the importance of havingtheir experience normalised, which was achieved by hearing thesimilarities and differences to their story of the reports of others goingthrough the same experience. This sharing was seen to reduce thesense of aloneness. The provision of information to, and assistance for,those participating in a longitudinal study has been reported by otherresearchers to increase rapport between participant and researcher 17.

Participants not only wanted to hear of the experiences of others butalso valued the opportunity to educate others about their own journey.As a research tool, story telling is an important medium for capturingthe shared common bonds through the messages of individual portraits18,19 .

Altruism is a factor recorded as an important motivation inrelation to participation in cancer research 20. For all parents in thisstudy the altruistic desire to help others was a significant motivationfor participating in the research. For many this altruistic desire wasrelated directly to the sense of emotional pain they had endured andtheir consequent desire to reduce the burden of suffering for otherswho follow. For this reason the opportunity to participate was seen as

Monash Bioethics Review Vol. 22 No. 1 77 Ethics Committee Supplementempowering for parents who otherwise found themselves in a verydisempowered situation. This sense of empowerment was reinforced bythe belief that research was beneficial and that the outcome of thisresearch project would provide benefit to others, both in the presentand the future. Appreciation for the opportunity to express concernsand/ or complaints through research by participants trapped in adisempowered health care situation has been reported elsewhere 2 1.

The importance of the nature and duration of the qualitativeresearch relationship has been documented elsewhere as a key elementin participant disclosure of information 22. In this study, qualitativeresearch was seen as user friendly, with few forms to complete andproviding a satisfying personalised experience. Another importantaspect of the research process that made it a positive experience forparents was the communication style of the researcher. The parentsindicated that the rapport built up with the researcher made them feelat ease, valued and positive about their ability to cope, and able to puttheir own situation in the context of the struggles of others. Theprivacy of the research relationship and intimacy built up with theresearcher were seen as valuable aspects of the experience.

A key element in the success of longitudinal studies isminimizing withdrawal 23. The findings from this study indicate that aqualitative methodology that is based on non-judgmental listening andsensitivity to the needs of participants is likely to deflect the possibilityof participant attrition.

CONCLUSIONThe participants in this research provided a great deal of

insightful information to indicate that the process of qualitativeresearch in longitudinal studies is actually a beneficial process thatcan make an important contribution to the lives of individuals goingthrough a challenging health care experience.

Note:I would like to express my appreciation for the work of the research assistants for thisproject, Mrs Janet Brown and Mrs Nicole Huff.

ENDNOTES

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