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nal transplant failure and disenfranchised grief:rticipants’ experiences in the first year post-graft failure

ul Gill a,*, Lesley Lowes b

ulty of Life Sciences and Education, University of South Wales, Pontypridd CF37 1DL, UK

ool of Healthcare Sciences, Cardiff University, 35-43 Newport Road, Cardiff CF24 0AB, UK

T I C L E I N F O

le history:

ived 25 February 2013

ived in revised form 19 January 2014

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A B S T R A C T

Background: Renal transplant failure has a devastating impact on patients and their

families. However, little research has been conducted in this area, which limits insight and

understanding of the transplant failure experience that could subsequently inform clinical

practice.

Objectives: To explore participants’ experiences of renal transplant failure in the first year

post-graft failure.

Design: A qualitative, longitudinal study informed by Heideggerian hermeneutics.

Participants and settings: A purposive sample of 16 participants (8 recipients, 8 ‘significant

others’) from a regional renal transplant unit and 3 District General Hospitals in South-West

England.

Methods: Data were collected through a series of three recorded, semi-structured

interviews in the first year post-renal transplant failure. Data analysis was informed by a

three-step analytical process.

Results: Renal transplantation was the treatment of choice and had a transformative effect

on the lives of all participants. Graft failure has 2 distinct phases; failing and failed and the

transition from one phase to the other is unpredictable, uncertain and stressful. Transplant

failure had a devastating impact on all participants, regardless of time since

transplantation and resulted in feelings of shock, grief, loss, anger, guilt and depression.

Dialysis was disruptive and demanding and served as a constant reminder of transplant

failure and lost freedom. Participants grieved the loss of their ‘previous life’ and ‘imagined

future’ but, beyond the understanding of close family members, these losses appeared

unrecognised, particularly by health professionals. Participants used various coping

mechanisms to deal with stressors associated with transplant failure. Factors affecting

coping and adjusting included improved physical health and social support, which was

especially important within the marital dyad. Healthcare services were positively

evaluated, although information concerning the prospect of transplant failure and support

post-graft failure could be improved.

Conclusion: Renal transplant failure has a profound impact on recipients, spouses and

other close family members and appears to resemble a form of disenfranchised grief. The

theory of disenfranchised grief provides a coherent explication of participants’ experiences

in this study, which should help inform clinical practice, particularly in relation to the

provision of information and emotional support post-graft failure.

� 2014 Elsevier Ltd. All rights reserved.

Corresponding author. Tel.: +44 1443 483135.

E-mail addresses: [email protected] (P. Gill), [email protected], [email protected] (L. Lowes).

Contents lists available at ScienceDirect

International Journal of Nursing Studies

journal homepage: www.elsevier.com/ijns

ease cite this article in press as: Gill, P., Lowes, L., Renal transplant failure and disenfranchised grief: Participants’periences in the first year post-graft failure. Int. J. Nurs. Stud. (2014), http://dx.doi.org/10.1016/j.ijnurstu.2014.01.012

0-7489/$ – see front matter � 2014 Elsevier Ltd. All rights reserved.

://dx.doi.org/10.1016/j.ijnurstu.2014.01.012

http://dx.doi.org/10.1016/j.ijnurstu.2014.01.012

mailto:[email protected]




http://www.sciencedirect.com/science/journal/00207489


P. Gill, L. Lowes / International Journal of Nursing Studies xxx (2014) xxx–xxx2

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What is already known about the topic?

� The impact of renal transplant failure on patients is oftendevastating and feelings of grief, loss and depression arecommon.� The return to dialysis compounds depression further as it

is disruptive and demanding.� Psychosocial adaptation is possible, but depression

usually only improves when physical health improves.

What this paper adds

� Renal transplant failure has two distinct phases; failing(progressive and irreversible) and failed (return todialysis). The transition from one phase to the otherusually takes several months or more and is associatedwith considerable uncertainty and anxiety.� The impact of transplant failure on spouses and other

close family members is also profound and furtherexacerbated by fear and concern for their loved ones,particularly since they are the main source of socialsupport, which in itself can often be onerous.� The renal transplant failure experience has the funda-

mental features of disenfranchised grief. Evidence fromthis study indicates that the theory offers an appositeframework for understanding the impact of and emo-tional response to kidney transplant failure in recipients,spouses and other close family members.

1. Introduction

Renal transplantation is the treatment of choice formost patients with end-stage kidney disease (ESKD) (BTS/RA, 2011). Transplantation often has a transformativeeffect on patients and their families and can significantlyimprove quality of life (Gill, 2012). However, despitecontinued improvements in anti-rejection regimens, thelife of a transplanted kidney is potentially finite. Rates ofgraft failure vary and are associated with a number offactors, such as type of donor and time since transplanta-tion. Average graft survival rates for first time, adult renaltransplant recipients in the UK are provided in Table 1.

Causes of transplant failure vary, but graft rejection is themost common factor (Sellares et al., 2012). The impact oftransplant failure is considerable for patients and theirfamilies and feelings of grief, loss, anger, depression andeven suicidal ideations are common (Streltzer et al., 1983;Carosella, 1984; Hudson and Hiott, 1986; Ouellette et al.,2006). Transplant failure can also cause a variety of otherproblems such as lethargy, diet and fluid restrictions, bodyimage issues, increased dependency and the necessity for

dialysis, which can compound depression further (Gill andLowes, 2009).

Despite an emerging evidence base, the impact oftransplant failure on patients and their families is under-researched, which significantly limits insight and under-standing in this area. An extensive literature search wasundertaken in 2008 and 2012–2013, using appropriatescholarly databases, such as CINAHL and MEDLINE. Thefollowing search terms were used, in various combinations:renal, kidney(s), transplant(s), transplantation, graft, failure,failing and rejection. However, very few empirical studieswere found that explored the personal perspectives of renaltransplant failure. Most of the relevant, available evidence isover 20 years old and/or in the form of case studies and/orclinical and anecdotal data (Carosella, 1984; Hudson andHiott, 1986; Viswanathan, 1991; Gill and Lowes, 2009), whichlimits the scope and wider relevance of findings. The two mostappropriate, comprehensive studies were conducted in theUSA (Streltzer et al., 1983) and Canada (Ouellette et al., 2009).Both studies used primarily qualitative methodologies andhighlighted the potentially devastating impact associatedwith renal transplant failure and the subsequent return todialysis for renal transplant recipients.

However, both studies were conducted retrospectively,with some data collected over a decade post-graft failure.Participant responses were therefore subject to potentialrecall bias. Furthermore, most available research onlyexplores recipients’ experiences of transplant failure andhas failed to adequately explore the impact on spouses andother close family members (and therefore the impact onmarital and family life), despite anecdotal evidence indicat-ing that they are often affected in a similar way to transplantrecipients. The retrospective design of most studies alsolimits understanding of how participants cope and adjust totransplant failure and there is an inadequate awareness ofpatient and family needs and expectations for informationand emotional care and support pre and post-graft failure.

This lack of evidence significantly hinders understand-ing of the transplant failure experience that could be usedto inform related practice and research. This prospective,longitudinal study was therefore undertaken to explorethese complex issues in the first year post-graft failure,from the experiences of recipients and their spouses/significant others.

2. Methodology

2.1. Study aims

The aims of the study were to explore participants’:

� Experiences of renal transplant failure.� Coping mechanisms and factors that helped to facilitate

emotional readjustment.� Perceptions of health care service provision, pre and

post-transplant failure.

2.2. Research approach

Given the study aims, the research was undertaken usinga phenomenological, longitudinal approach, informed by

Table 1

Graft survival rates over 1, 2, 5 and 10 years.

Time since transplant Brain dead donor Living kidney donor

1 year 94% 97%

2 years 91% 95%

5 years 85% 91%

10 years 71% 78%

Data from NHS Blood and Transplant (2014).

Please cite this article in press as: Gill, P., Lowes, L., Renal transplant failure and disenfranchised grief: Participants’experiences in the first year post-graft failure. Int. J. Nurs. Stud. (2014), http://dx.doi.org/10.1016/j.ijnurstu.2014.01.012


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deggerian hermeneutics (Walters, 1995). Phenomenol- is both a philosophy and a research approach (Morse

Field, 1995). As a research methodology, it is basedhin the humanistic research paradigm and follows alitative approach, the aim of which is to enhanceerstanding of ‘lived experiences’ (Denscombe, 2003).re are two main schools of phenomenology; descriptivesserl) and interpretive (Heidegger) (Flood, 2010).ever, further variations and considerable debate

ilosophical and methodological) exist within the phe-enological movement, both of which are beyond the

pe of this paper.The focus of Heideggerian hermeneutics is the ‘inter-tation’ of ‘lived experiences’ (Gill and Lowes, 2008).earchers subscribing to Heideggerian philosophynowledge that they can only interpret somethingording to their own beliefs, experiences and preconcep-s, which are a legitimate part of the research process

should not be left out (Lowes and Prowse, 2001).refore, researchers using this approach acknowledgeir own background and preconceptions and use themstructively to ‘co-create data’ with participants inection and analysis of data (Gill, 2012). Interviews, inticular, therefore involve a more meaningful dialogueween researcher and participant. The authors, a Seniorearch Fellow with an interest in renal transplantation) and a Professor with an interest in chronic conditions

), therefore used their experiences to constructivelylore, interpret and understand participants’ experi-es in this study. However, it is perhaps important tonowledge that, based on our previous case study (Gill

Lowes, 2009), we did anticipate the potential forlings of grief and loss post-transplant failure. But, at thet of the study, we had no preconceptions about theoretical framework (disenfranchised grief), which issented later in this paper. This theory was onlyeloped following in-depth analysis and a furtheriew of the relevant literature (particularly in relationrief and loss) during the preparation of this article.

Service user involvement

This research arose primarily from a previous, separatee-study based on a husband to wife donation thatlored the lived experience of live-related renalsplant failure (Gill and Lowes, 2009). This family

sequently offered guidance, based on their personalerience, that helped inform the planning and devel-ent of this study. Their input included suggestions

ut recruitment and data collection timeframes (e.g., thediness and ability to talk about such a traumaticerience); thus helping to ensure the relevance andropriateness of the research.

Sample and recruitment

In seeking to understand the transplant failureerience, participants were purposively recruited into

study between March and December 2008, from aional renal transplant centre and three District Generalpitals (with nephrology departments) in South-West

England. In each hospital, a senior nephrology/transplanthealth professional (medical consultant or senior nurse)identified, approached and recruited potential partici-pants into the study, using an agreed inclusion/exclusioncriteria, which were developed in consultation with arenal transplant physician and a senior transplant nurse.

Respondents were invited to participate if they wereover the age of 18 years, able to provide informed consentand had recently experienced kidney transplant failure,regardless of time since original transplant or source ofdonor organ. In order to accurately explore the initialimpact of transplant failure and to reduce the potential forrecall bias, participants also had to have recently returnedto some form of dialysis (within 3 months), or were verynear the point of requiring dialysis, at the point ofidentification and approach, (e.g., eGFR �10 with support-ing biochemistry and associated physiological changes)and aware of their condition. Respondents were not invitedto participate if they were legal minors, incapable ofproviding informed consent, had returned to dialysis, dueto transplant failure, over 3 months ago (at the point ofidentification) or were not fully aware of their condition(e.g., if not yet on dialysis).

Suitable participants were sent a participant informa-tion pack, which included a covering letter, a participantinformation leaflet and two consent forms (one for therecipient and one for their ‘significant other’, if appro-priate). Respondents wishing to participate completed,signed and returned the consent forms to the researcher inthe freepost envelope provided. Families were thencontacted by the lead researcher (PG), who was notinvolved in their treatment or care, to discuss any queriesand, if appropriate, arrange a mutually convenient meetingto conduct the interviews.

2.5. Participant information

Nineteen recipients met the inclusion criteria and weresent participant information packs. Although 10 recipients(and their ‘significant others’) consented to participate, onerecipient died before interview and another recipient couldnot be contacted. Consequently, the final sample com-prised of 16 participants: Eight recipients (6 females, 2males) and eight ‘significant others’ (6 males, 2 females).To ensure anonymity and confidentiality, individualparticipant demographics will not be provided in thispaper.

The mean age of recipients’ was 57 years (range 34–68years) and significant others 67 years (range 48–80 years).All recipients were married, affianced or in a civil partner-ship. Thus, ‘significant others’ comprised recipients’ spousesor partners, except in one case, where the recipient’s motherparticipated, due to the spouse’s work commitments. Theterm spouse/partner is therefore used interchangeablythroughout the paper. Seven recipients had receivedtransplants from deceased donors and one had received alive transplant from her sister. At recruitment, six recipientswere receiving dialysis (4 hospital based haemodialysis –HD, 2 home based peritoneal dialysis – PD). Two had not yetcommenced dialysis, but therapy was deemed ‘imminent’.Both subsequently returned to dialysis (1 PD, 1 HD) during




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the study. Mean graft survival time (i.e., time fromtransplantation to return to dialysis) was 4½ years (range10 months–12 years).

2.6. Data collection

To explore the impact of transplant failure andparticipants’ subsequent experiences over time, data werecollected through three, audio-recorded semi-structuredinterviews, in the first year post-graft failure. Initialinterviews were conducted shortly after recruitment andtwo further follow up interviews were conducted threeand nine months later. The longitudinal approach allowsfor data to be collected from the same participants atdifferent points in time, which can generate richer data andcapture potential changes and evolving experiences overtime (Tod, 2010).

All participants were interviewed individually, inprivate, in their own homes. Each interview lastedapproximately 30–60 min. Phenomenological interviewsshould provide some structure and consistency but alsoallow participants to talk freely about their experiences(Morse and Field, 1995). The interview schedules thereforecomprised of several open questions that exploredparticipants’ experiences of transplant failure and asso-ciated issues. To obtain an in-depth understanding ofparticipant experiences, responses were followed upaccordingly, as and when appropriate. For example, whereclarification (e.g., What did you mean?) and/or furtherinformation (e.g., What was it like, how did you feel?) wererequired.

The interview schedule was piloted, at all stages of datacollection, on the first two participants recruited into thestudy. The schedules were found to be appropriate andwere not amended in any way. All pilot data were thereforealso included in the study findings.

2.7. Data analysis

Interviews were digitally recorded, transcribed ver-batim and analysed using the Linsdeth and Norberg(2004) three-step, phenomenological-hermeneuticmethod. This analytical technique involves ‘naive read-ing’ of transcripts to establish a sense of the data (readingand re-reading transcripts and listening to interviewswith an ‘open mind’), ‘structural analysis’ (initialidentification and formulation of themes and sub-themesthat convey a sense of the lived experience, in everydaylanguage) and ‘comprehensive understanding’. This finalphase involves a critical, in-depth interpretation of thedata as a whole and reflection, revision and reconsidera-tion of the themes identified during the analyticalprocess.

The concept of ‘comprehensive understanding’ is anexpression used by Linsdeth and Norberg (2004). Theterminology may, however, be problematic for somephenomenological researchers, as it perhaps suggests thatthe discovery of fundamental, objective ‘truths’ is possible.We make no such claims and, as Linsdeth and Norberg(2004) add, within this analytical framework, interpreting

This entails continually moving between parts and thewhole of the text being analysed, in the constant search forunderstanding and meaning of the data (Polit and Beck,2005). Within this analytical process, understanding isalways situated (i.e., at a particular point in time), neverabsolute (Todres and Wheeler, 2001) and is invariablyinformed by the researchers’ experiences, understandingand historical context.

To logically and concisely convey participants’ experi-ences over time, data were analysed and are presentedcollectively. Findings are presented in ‘everyday language’that closely reflect participants’ experiences (Linsdeth andNorberg, 2004) and are therefore organised and presentedin a manner consistent with the espoused analyticaltechnique. Data analysis was managed using Nvivo 7.

2.8. Ethics

NHS Research Ethics Committee approval was grantedin 2008. Written informed consent was obtained from allparticipants before the first interview and verbal consentbefore all subsequent interviews. Participants wereassured of anonymity and confidentiality and advised thatthey could stop the interviews and/or withdraw from thestudy at any time, without prejudice. To ensure anonymityand confidentiality, names have been replaced by asequential identification code, which also indicateswhether participants are recipients (R) or significantothers (SO).

3. Findings

Five central themes were identified from the analysisprocess:

� Life with a transplant.� The impact of transplant failure.� Treatment issues and options.� Coming to terms with transplant failure.� Provision of healthcare services.

3.1. Life with a transplant

Causes of ESKD varied but were primarily due topolycystic kidney disease. The condition caused numerousproblems, including lethargy, diet and fluid restrictions,depression, increased dependency, unemployment andloss of pregnancy (R7). Recipients spent between 4 monthsand 5 years (mean; 2½ years) on dialysis, which they founddisruptive, restrictive and demanding.

Transplantation was the treatment of choice, as it wasperceived to offer the potential for improved health, areturn to ‘normality’ and ‘freedom from dialysis’. Trans-plantation generally had a positive effect on the lives of allparticipants, creating an overwhelming sense of ‘freedom’and allowing some recipients to return to work, give birth(R7) and ‘enjoy life again’:

‘‘It was going to save my life, you don’t want to go on themachine for the rest of your life and I was able to live life
like I wanted to. We’ve enjoyed life much more, we’ve the data also involves entering the ‘hermeneutic circle’.


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been able to travel, have more of a social life, withoutworrying too much’’.R2, male, 1st interview.

However, while aware of the potentially limited life of transplant, which caused uncertainty and anxiety,ticipants commonly used coping mechanisms such asidance and denial, to deal with the prospect of grafture.

The impact of transplant failure

Transplant failure was initially associated with aeral awareness that ‘things weren’t right’, such asdness and oedema. As graft functionality deterioratedher, recipients and their families were informed bylth professionals of impending transplant failure.

ever, as none of the participants had seriouslytemplated the prospect of graft failure, all felt shocked

unprepared for this eventuality:

‘‘I thought it would last five or ten years. You put it to theback of your mind and deal with it if and when it happens.You don’t want to dwell on it so that you can get on withlife. It was a shock when they said it was in rejection’’.R4, female, 2nd interview.

For most recipients, transplant failure was a gradualcess and the transition from ‘failing’ to ‘failed’ wasrefore unpredictable, uncertain and emotionally chal-ging. This often initially resulted in feelings of denial,gaining and hopeful optimism. Many recipientsrred to this period as ‘life being on hold’. All eventually

ched a stage of acceptance when their health noticeablyeriorated and the return to dialysis represented the ‘linehe sand’.Graft failure was primarily attributed to chronicction. However, R8 apparently developed acute,ogenic graft rejection because his immunosuppressantod levels had dropped significantly over several months

this had not been properly detected at transplantow up clinics. Despite prompt treatment, followingsequent detection, his transplant failed within severals, which left him and his fiancee angry and bitter.The impact of transplant failure was devastating for allticipants, regardless of time since transplantation andulted in feelings of grief, loss, anger, guilt (in the case of

related transplantation) and depression:

‘‘They said it’s failing and by summer you’ll probably beon dialysis. . . I was really shocked. . .. Although I knew itwasn’t tip top, I thought it would keep going. I wasdevastated. I thought the sensible side of me would say,you know it might happen some time. I found itextremely difficult, I couldn’t tell my best friend, Icouldn’t speak about it. When I did tell people,somebody would send an e-mail and I’d be crying overthe computer. I found it hard to accept and speakingabout it made it more real somehow. It made medepressed. It’s strange, because my experience ofdialysis was positive, yet the thought of having to doit again, I just couldn’t cope with it’’.

Some recipients required medication (e.g., anti-depres-sants) following transplant failure. The impact on spouses,close family members and family life in general was alsoprofound and recipients’ well-being was often a source ofconsiderable concern for all spouses:

‘‘I was more gutted than him because he didn’t want togo back on dialysis and he’d had that spell of getting hislife back in order and I got really upset by it. He’s angryand I’ve had a couple of times when he’s just lay cryingor said, I want to stop dialysis and go naturally. He’s hitrock bottom. When I go into work sometimes he is quitelow. I know he’s got enough tablets should he wantto. . .. A couple of times, I’ve come home to see if he wasokay, in case he had done something silly. So it isworrying, it’s upsetting’’.SO8, female, final interview

Feelings of loss and sadness were considerable and allparticipants, particularly recipients, appeared to mourn fortwo distinct periods in their lives, following transplantfailure. Firstly, for the loss of their ‘previous life’, whenrecipients were in good health and their transplants werefunctioning:

‘‘We used to be so active, we used to take ballroomdancing classes and run bingo, it was all voluntary. Weused to throw our heart and soul into it, it waswonderful, but all this has come to an end. . .’’.SO2, male, 2nd interview.

And secondly, for the future they imagined they wouldhave had if the transplant had not failed:

‘‘The future I imagined has gone now and we are lookingforward differently. The delight of our life was livingabroad. We planned it for years but things did go wrongso we came back, but we had to desert our home, ourdream. The thought of not being able to go back there tolive has left us feeling gutted’’.R2, male, 2nd interview.

3.3. Treatment issues and options

The return to dialysis was profound and often initiallyassociated with problems such as insomnia, dizziness andnausea and vomiting. Besides being unwanted andgenerally disliked, dialysis also served as a constantreminder of transplant failure, which appeared to com-pound depression further for some recipients. Dialysis wasalso generally found to be disruptive, restrictive anddemanding, particularly for those who were younger,employed and/or on hospital based HD:

‘‘I didn’t realise just how much freedom the transplanthad actually given us, in that we are now very restrictedin what we can do, particularly as she’s now on anevening session. We’ve got to plan everything and itdoes interfere with your life’’.S04, male, 1st interview.

All recipients therefore emphasised the importance ofincorporating dialysis into their lives to minimise its

entially disruptive impact:
R5, female, 1st interview. pot



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‘‘I make it part of my life, I know it’s 3 days a week, butthose days we keep for dialysis and sometimes we gofor lunch afterwards and I don’t feel like it’s a chore. It’ssaving my life and 3 days isn’t much to ask for that. Ifyou incorporate it into your life it’s better’’.R1, female, 1st interview.

Many recipients initially experienced a deterioration inhealth following their return to dialysis and most thereforetook several months to settle back into a routine. This wasalso generally easier to achieve for those who were retiredand/or on home dialysis. Dialysis did, however, graduallyhelp to improve recipients’ general health and wastherefore eventually (often grudgingly) accepted by allrecipients. Consequently, some spouses questionedwhether dialysis should have been initiated sooner.Nonetheless, those on HD emphasised the need for greaterflexibility, where possible, at dialysis units, especially forthose who were working.

However, despite the impact of graft failure, no oneregretted having a transplant and transplantation was stillperceived as the best long term treatment option. Formany, the prospect of another transplant was a significantsource of hope and optimism:

‘‘I know I couldhave another kidneyandcarry on withmylifeagain.ButIcan’twait; I’mnotworriedatall, soIcangeton with my life again, because I know the other side of it. Iknow you can feel well and do things because we arerestricted socially. I would have a lot more time with myfamily. I keep hoping it is not going to be that long’’.R7, female, 2nd interview.

However, the prospect of re-transplantation was initiallya source of concern for some participants, particularly thosewho were ‘settled’ on dialysis (e.g., R3). These participantswere concerned about ‘upsetting the applecart’ and there-fore needed time to readjust before they could seriouslyconsider another transplant. Although, by the end of thestudy, all recipients maintained that they would probablyaccept another transplant, if offered.

Some recipients also felt that they would not nowconsider a live transplant, as they would not be able dealwith the guilt if it failed again. What was also notable wasthat all participants now perceived transplantation verydifferently and therefore had very different informationneeds and expectations regarding re-transplantation:

‘‘You have it first time and say this is the end of myworries and then you realise it isn’t. The second timeround, I’m asking a lot more questions. I’m not sayingthey mislead you in hospital because they don’t. Firsttime you don’t think to ask questions really, it’s naive Iknow, but now I want to know more. Some people thinkyou’ve had your transplant and everything is fine, but ofcourse that’s just the beginning’’.R3, female, 2nd interview.

3.4. Coming to terms with transplant failure

Participants used a variety of coping mechanisms tohelp them deal with transplant failure, such as beingpositive, resolute and readjusting to life, where possible.

Changing expectations and seeking enjoyment from other,less strenuous activities, such as reading, was also commonfor most recipients. For many, the progressive nature oftransplant failure had facilitated ‘acceptance of theinevitable’.

Recipients and their partners actively supported eachother post-graft failure and for recipients in particular,spousal support was essential. Spouses played a key role insupporting and often caring for recipients, although theincreased dependence made many recipients feel guilty.Spouses often found that providing emotional support was,at times, emotionally demanding:

‘‘The mental effect is absolutely devastating; it’s thebiggest roller coaster you ever rode. You’re on a highone minute and distraught the next. Your ownexperience is that your wife, who you care most ofall about, is slipping away. I can do everything for herexcept treat her medically, so when she is ill andrequires treatment, I feel totally useless, but I can’t tellher that. At my age, you have sufficient fortitude to notshow that at all, so there has to be a lot of resolve. I canconfine myself to taking care of my wife, but so as far asmy thoughts are concerned, they are of despair, but youmust be. . . positive. You can’t say you’re not eating well,you look ill. You can only support. It’s impossiblesometimes’’ (Became tearful).SO3, male, 1st interview.

However, the ability of all participants to cope andadjust appeared to be closely related to recipients’ physicalhealth and as this improved with time (following theresumption of dialysis), so too did their ability to readjust.This subsequently also had a considerable impact on thelives of all participants and their families:

‘‘Since I’ve been back on dialysis, I feel better than I’vefelt for 2 years. I was apprehensive about going back,but as soon as I got on. . . I was fine. My mood improvedand I haven’t really been so down since. I can go out nowand there’s so much more that we are doing’’.R1, female, 2nd interview.

Having a perceived sense of personal control overdialysis by being methodical and making it ‘fit in with theirlives’ was also instrumental in facilitating emotionalreadjustment. R8, however, found hospital based HDparticularly disruptive and dictatorial and this was furtherexacerbated by a breakdown in the relationship withdialysis staff. He subsequently undertook home dialysistraining in order to ‘regain control of his life’ and by the endof the study, was dialysing at home:

‘‘Since starting home dialysis, I’m a lot less stressed.Treatment wise it’s no different; however, you feel thatyou have got more control. Before, because you are tiedto a time, if you miss it you have had it. Now it’s like, yeswe can go out and do that and I can either dialyse thenext morning or at night. So it gives you a sense ofcontrol again, getting your life back, and obviously withwork, I can do dialysis around my life rather than theother way around. So it’s good’’.R8, male, final interview.



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Provision of healthcare services

Hospital and community healthcare services wereerally well evaluated. However, Family 8 were veryical of the nature of R8’s transplant failure and, by the

of the study, had sought legal advice about histment. Participants were generally happy with the

vision of information from healthcare staff, pre andt-graft failure. However, most participants felt thaty could have been better prepared for impendingsplant failure but were unable to articulate how this

ld have been achieved and acknowledged that getting balance of information right was difficult:

‘‘I don’t think they did prepare me or I don’t think I wasaware, but maybe that’s not their fault, I certainly hadall the information. . .. Maybe I just didn’t see it, or didn’twant to see it, but there was no. . .. Until they said look,this is it, nothing had really been said specifically.Maybe something was said before because a member ofthe education team saw me in clinic and said the Dr hasasked me to see you, things aren’t looking good and thatwas the bombshell. You can’t keep harping on about itall the time. I could see the figures, I don’t think theycould have done more. Maybe it was down to me’’?R5, female, 1st interview.

Health professionals were generally found to beportive post-transplant failure. However, spouses feltt they were largely left to ‘get on with it’ with virtuallysupport from the healthcare team. All participants also

that the service lacked appropriate emotional supportworks, such as patient support groups, or access to asplant psychologist, post-transplant failure:

‘‘They aren’t horrible when they tell you, but it’s likeyour kidney has failed, we’ll put you back on thetransplant list and you’ve got to go back to dialysis.That’s fine but I don’t think they realise how you arefeeling. It has a major impact on your life because youare feeling really well then all of a sudden your worldhas come to an end and you have to go back to dialysis.There is a psychologist to see before you have atransplant but not after, if it does fail. I think that mighthelp some patients, they might want to talk to someoneor talk to someone who has got a transplant that hasjust failed. I found it very helpful to speak to otherpatients on dialysis because you don’t feel alone’’.R7, female, 1st interview.

iscussion

The impact of transplant failure

Renal transplant failure affects many aspects ofsonal and family life and therefore has a profoundact on patients and their families, regardless of time

ce transplantation or source of donor organ (i.e., live oreased). Feelings of grief, loss, sadness, guilt (in the caseive transplantation) and depression are common andvasive (Gill and Lowes, 2009; Ouellette et al., 2009;ltzer et al., 1983). This study demonstrates that the

impact on spouses is also considerable and, consequently,they appear to experience similar emotional reactions.Furthermore, as in other chronic conditions, spouses oftenhave to deal with ongoing fear and concern for theirpartners, potential changes in marital roles, relationshipsand responsibilities and are usually the main source ofemotional support (Revenson, 1994; Sidell, 1997; Kelly,1998; Kurz and Cavanaugh, 2001; Burker et al., 2006;Taylor and McMullen, 2008) which can cause additionalstress and anxiety.

Following transplantation, fear of graft failure is the mainconcern for transplant recipients and their families (Lindq-vist et al., 2004; Nilsson et al., 2008; Chen et al., 2010), yetmany use emotion focused coping mechanisms, such asavoidance and denial, to deal with this stressor (Gill andLowes, 2009; Ouellette et al., 2009). While this maymoderate the anxiety associated with the prospect oftransplant failure, the use of such coping mechanismspossibly compounds the eventual impact of graft failurebecause patients have not properly considered how theywould deal with it, if and when it occurs (Schweitzer et al.,2003; Gill, 2012). This may also provide a rationale as to whyrecipients in particular, feel so shocked and unprepared fortransplant failure, even when informed of the possibility.

4.2. Grief and loss

Feelings of grief and loss post-graft failure areconsiderable but are probably a normal emotionalresponse to such a traumatic experience. However, whilethe concept of grief has been acknowledged within theliterature, it has rarely been articulated what it is thoseaffected by transplant failure possibly grieve for.

Grief is a natural adaptive reaction associated with theloss of someone or something significant to which ameaningful bond has formed (Corr and Coolican, 2010;Pomeroy, 2011; Chan et al., 2012). Traditional theories ofgrief have largely focused on death and dying. However,grief can also occur following other significant losses, suchas redundancy, the breakup of a close relationship, loss of alimb and loss of health (Moulten, 1984; Lowes and Lyne,2000; Parkes, 2000; Ahlstrom, 2007; Pomeroy, 2011). Inthis study, interpretation of the data suggest that,following graft failure, participants grieve for lossesassociated with ‘their previous life’ and, as originallypostulated by Gill and Lowes (2009), ‘their imaginedfuture’. These perceived losses, whilst perhaps not astangible as the death of a loved one, are significantnonetheless and include loss of health, independence,autonomy, control, preferred treatment, freedom, lifestyleand hopes and expectations for the future.

Consequently, the sense of loss, as a result of illness,often creates a situation where there is a disparity betweenthe current reality, created by the losses, and the desiredreality (Ahlstrom, 2007). For participants in this study, thedissonance between how things were, how things are andhow things ought to be is considerable and appears to bethe primary source of grief, loss, sadness and depression.However, the grief process is invariably unique and non-linear and probably dependent on the person, theircircumstances and the nature and extent of the perceived




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losses. Generally, the greater the sense of loss, the greaterthe profundity of grief (Parkes, 2000).

However, it appears that the nebulous nature of lossesassociated with transplant failure is not properly appre-ciated outside of the marital dyad or immediate closefamily. Health professionals in particular probably do notadequately consider how such losses might affect patientsand their families or the implications of this for clinicalpractice, especially the provision of appropriate informa-tion and emotional support. Consequently, the experiencesof participants in this study appear to resemble a form of‘disenfranchised grief’. Grief can be disenfranchised for avariety of reasons but typically occurs when the loss(es)(e.g., loss of health), relationship (e.g., death of anextramarital partner), circumstances of death (e.g., suicide)or the griever (e.g., those with learning difficulties) are notproperly recognised, acknowledged or socially supported(Doka, 1989; Corr, 1998; Doka, 2002).

Non-death related losses in particular are commonlyperceived to be less profound than bereavement andtherefore ‘the right to grieve’ is often not adequatelyaccorded, which can create further problems for thoseaffected. For example, ‘disenfranchised grievers’ usuallyfail to seek out appropriate social support because theybelieve that none is available, while those able to providesuch support often fail to do so because they are unawarethat it is necessary (Thornton and Zanich, 2002). Therefore,health professionals, and even some family and friends,probably do not comprehend the psychosocial conse-quences of transplant failure, particularly the profoundfeelings of grief and loss, and subsequently fail to provideappropriate help, advice and support, which probablyfurther compounds the experience and contributes to thesense of disenfranchisement.

4.3. Coping and emotional readjustment

Despite the trauma associated with transplant failure,research indicates that it is possible to cope and adapt to theexperience and several factors are integral to this process.For example, grieving and mourning, while painful, help toacknowledge and move on from the losses associated withgraft failure. However, while transient, grieving related toillness rarely results in acceptance (especially over a shortperiod), but it does help to facilitate emotional readjustment(Kelly, 1998; Lowes and Lyne, 2000). A number of problemand emotion focused coping mechanisms are also used todeal with stressors, such as being pragmatic, optimistic andmaking lifestyle modifications, where appropriate. Recipi-ents’ physical health, however, is particularly important andis it improves, so too does depression, subjective quality oflife and feelings of personal control, which also has a positiveimpact on spouses.

Social support, especially within the marital dyad, isvery important. During illness, it is common for spouses(healthy and ill) to support each other and for mostpatients, spouses play an essential role in helping themcope and adjust to their illness (Revenson, 1994; Kurz andCavanaugh, 2001; Banthia et al., 2003). However, theability of healthy spouses to be supportive is potentiallyfinite, as the amount of support they are able to provide

may be limited by the degree of stress they are facing(Revenson, 1994). It should, therefore, be of real concern tohealth professionals that spouses feel so inadequatelysupported post-graft failure, especially since this invari-ably affects their ability to be supportive of their partners.

4.4. Dialysis and re-transplantation

Some patients may experience some relief after trans-plant failure because it allows them to go back to the familiar,secure and predictable environment of dialysis (Ouellette etal., 2006), particularly if their transplants were problematic.However, for most, the return to dialysis is incrediblydifficult as it is unwanted and largely unanticipated.Furthermore, it is often found to be intrusive, disruptiveand demanding (Ouellette et al., 2009) and, initially at least,probably also serves as a constant reminder of a failedtransplant, which perhaps further compounds feelings ofloss, sadness and depression (Gill and Lowes, 2009).

Predicting the return to dialysis, however, is complex,as it is usually dependent on several factors, such as eGFR,blood biochemistry, psychosocial issues and possiblyphysician preference. This unpredictability causes con-siderable uncertainty and anxiety in patients and theirfamilies. Research in this area is limited and, consequently,when and how best to manage the return to dialysis post-graft failure is unclear. However, existing evidenceindicates that many patients returning to dialysis initiallyexperience more problems, such as depression, quality oflife issues and higher mortality and morbidity rates, thanother dialysis patients because of underlying co-morbid-ities (e.g., anaemia) associated with transplant failure(McCauley and Johnson, 1994; Messa et al., 2008; Ayuset al., 2010; Ruisanchez et al., 2011). Such patients maytherefore take up to a year to become (re)accustomed todialysis (Ruisanchez et al., 2011).

Despite the trauma associated with graft failure,transplantation remains the treatment of choice for mostpatients (Ouellette et al., 2006). Re-transplantation prob-ably also offers clear survival benefits when compared tolong term dialysis (Messa et al., 2008). However, it isimportant for health professionals to realise that somepatients may not want to undergo re-transplantation, evenif eligible, because of their previous experience (Ouelletteet al., 2006), particularly if they are now settled on dialysisand do not want to harm the stable routine of therapy.

4.5. Implications for practice and research

Evidence from this study indicates that the renaltransplant failure experience has the essential psychoso-cial features of disenfranchised grief. This theory thereforeprovides a useful framework for understanding the impactof and emotional response to graft failure, which can helpinform clinical practice, particularly the provision ofinformation and emotional care and support. For example,it can help health professionals provide a rationale for thecomplex emotions experienced by transplant recipients,their spouses and other close family members at such adifficult time. Furthermore, providing patients with theopportunity to discuss their feelings and concerns, as and



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en appropriate, and reassuring them that feelings suchrief and loss are natural (Carosella, 1984; Hudson andtt, 1986), can help to normalise and validate theirotions, which is a necessary step in the grieving processornton and Zanich, 2002).Transplant failure is often a lonely, isolating experience,ich can further compound sadness and depression.dic coping and social support from close family andnds is, however, common and effective and should beouraged, where appropriate. However, spousal supportuld not be to the detriment of their personal wellbeing.lth professionals therefore need to establish innova-, effective methods of assessing patient and spousalds and providing appropriate person centred care,rmation and support where feasibly possible, particu-

y at dialysis sessions and/or clinic visits. Research hasnd that spouses who are adequately supported bylth professionals are better able to cope, adjust and beportive of their ill partners (Revenson, 1994; Burker et2006; McIntyre and Burton, 2007). There is also a needdevelop more formal and informal support networkst-transplant failure, such as patient support groups andess to counsellors and/or psychologists, where appo-. Furthermore, there is a risk of suicide in some patientsause of the associated trauma and professional medicalrvention may subsequently be required by some

ients post-graft failure, particularly if they are clinicallyressed, unable to cope and adjust or express suicidal

lings (Streltzer et al., 1983; Gill and Lowes, 2009)Existing research has primarily focused on the impact ofiled (but not a failing) transplant. However, because of

prospective, longitudinal study design and heteroge-us nature of the sample group, this study demonstratest transplant failure has two distinct phases; failingareness of the progressive, irreversible deterioration in

ft function) and failed (return to dialysis). The transition one phase to the other typically takes several monthsore and, while this may help some come to terms withsplant failure, it is also associated with significantertainty, anxiety and unpredictability. Patients and theirilies may therefore require particular information,ice and support during this difficult period, especiallyelation to the anticipated return to dialysis.Incorporating dialysis into daily life, where possible,uld also be encouraged, as it can provide patients with ase of control and, consequently, may make therapyre acceptable (Ouellette et al., 2009). While transplan-on remains the treatment of choice for most patients, itmperative that those who are eligible are adequatelyessed prior to re-transplantation (even if they under-nt evaluation before their first transplant) as the grafture experience may affect their attitudes and expecta-s about re-transplantation (Ouellette et al., 2006),

luding their feelings about the source of future organs., live versus deceased). For example, the need for time,port and balanced information that will help informision making and manage realistic expectations arely to be very different in those who have experiencedsplant failure. It is also probable that treatment

ferences may change over time, therefore periodic

Given how shocked and unprepared participants are forgraft failure, it is important to consider how best to preparepatients and their families for transplantation and theprospect of graft failure. However, achieving a suitablebalance between adequately preparing patients for thepossibility of graft failure, whilst also encouraging them tomake the most of their transplants and get on with life, isperhaps insuperable.

This study has also highlighted areas in need of furtherresearch that could help inform clinical practice. Theseinclude:

� When and how best to facilitate the return to dialysis,post-graft failure.� Establishing the longer term consequences of graft

failure for patients and their families and subsequentimplications for treatment preferences and clinicalpractice.

4.6. Limitations of study

This qualitative study has several limitations. Given thesize and nature of the sample group, findings cannot begeneralised or be assumed to be representative of thewider transplant community. Participants’ mean age was62 years and the relationships between recipients and‘significant others’ were strong and primarily spousal.Consequently, their experiences may not accurately reflectthe experiences of other patients or family members,particularly those who are younger and/or non-spousal.Finally, the study took place over a 1 year period post-graftfailure and does not therefore provide evidence about thelonger term consequences of transplant failure. Conse-quently, caution should be exercised in transferring thesefindings to other participant groups.

5. Conclusion

This study has provided an extensive insight into therenal transplant failure experience and highlighted thedevastating impact that graft failure has on recipients, theirspouses and other close family members. Data demonstratethat the experiences of participants in this study have theessential features of disenfranchised grief. It is thereforepostulated that the concept of disenfranchised grief offers anappropriate framework for understanding the psychosocialconsequences associated with renal transplant failure. Thesubsequent improved understanding of this complex,traumatic process can therefore help to inform clinicalpractice and related research, and further develop thetheory of disenfranchised grief, particularly in the context ofrenal transplant failure and other chronic conditions.

The findings from this study also have potentialimplications for preparing patients and their families forrenal transplant failure and the provision of relevantinformation, advice and emotional support post-graftfailure.

Conflict of interest

None.
ssessment may be required.



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Funding

Study was funded by RCBC Wales. RCBC monitoredprogress quarterly over a 2 year period and required a finalreport on completion of research

Ethical approval

Details of ethical scrutiny/approvals obtained.

Acknowledgements

We would like to thank the following for theirassistance; Dr Richard Banks, Dr Coralie Bingham, DrChris Burton, Kay Hamilton, Maria Langdon, Dr Chris Shaw,Dr Jo Taylor

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