This dissertation examines the extent to which individual-level and social network-level factors explain disparities in living donor kidney transplantation (LDKT) and considers the moral implications. Paper One examines whether patient characteristics explain racial disparities in the rate of donor presentation and LDKT in a sample of 752 potential kidney recipients and 654 potential kidney donors. Propensity score matching and subclassification were used to balance the patient characteristics. Survival models revealed that only 24% of blacks compared to 39% of whites would have at least one potential donor evaluated within the first year, even after accounting for differences in the distribution of patient characteristics. Thus, lower rates of donor presentation among black recipients cannot be explained by differences in individual-level characteristics. Paper Two examines whether differences in social networks contribute to disparities in LDKT. Using interview and medical record data from a representative sample of 389 dialysis patients in Greater Boston and a subsample of 302 alters, we found that social network characteristics, especially network size, were strongly predictive of pursuing LDKT. Significant racial disparities in health and medical distrust among social networks of black patients present compelling evidence for network effects. Fewer network members of black patients may be eligible for donation owing to compositional health differences, and those eligible may be less willing to donate due to greater distrust or poor socioeconomic position. Paper Three argues that society ought to be concerned with previously neglected disparities in LDKT, specifically the fraction stemming from disparities in social networks because networks provide one pathway by which inequalities can be perpetuated throughout society and over time. Insofar as social networks are influenced by an unjust distribution of social forces, and social networks influence life chances by restricting (or enhancing) one’s ability to obtain a LDKT, then life chances of dialysis patients are unjustly determined by social networks. Potential policies aimed at providing compensatory damages to patients whose networks have been adversely affected by the unjust influence of social determinants are examined.

The worldwide organ shortage occurs despite people’s positive organ donation attitudes. The discrepancy between attitudes and behaviour is evident in Australia particularly, with widespread public support for organ donation but low donation and communication rates. This problem is compounded further by the paucity of theoretically based research to improve our understanding of people’s organ donation decisions. This program of research contributes to our knowledge of individual decision making processes for three aspects of organ donation: (1) posthumous (upon death) donation, (2) living donation (to a known and unknown recipient), and (3) providing consent for donation by communicating donation wishes on an organ donor consent register (registering) and discussing the donation decision with significant others (discussing). The research program used extended versions of the Theory of Planned Behaviour (TPB) and the Prototype/Willingness Model (PWM), incorporating additional influences (moral norm, self-identity, organ recipient prototypes), to explicate the relationship between people’s positive attitudes and low rates of organ donation behaviours. Adopting the TPB and PWM (and their extensions) as a theoretical basis overcomes several key limitations of the extant organ donation literature including the often atheoretical nature of organ donation research, thefocus on individual difference factors to construct organ donor profiles and the omission of important psychosocial influences (e.g., control perceptions, moral values) that may impact on people’s decision-making in this context. In addition, the use of the TPB and PWM adds further to our understanding of the decision making process for communicating organ donation wishes. Specifically, the extent to which people’s registering and discussing decisions may be explained by a reasoned and/or a reactive decision making pathway is examined (Stage 3) with the novel application of the TPB augmented with the social reaction pathway in the PWM. This program of research was conducted in three discrete stages: a qualitative stage (Stage 1), a quantitative stage with extended models (Stage 2), and a quantitative stage with augmented models (Stage 3). The findings of the research program are reported in nine papers which are presented according to the three aspects of organ donation examined (posthumous donation, living donation, and providing consent for donation by registering or discussing the donation preference). Stage One of the research program comprised qualitative focus groups/interviews with university students and community members (N = 54) (Papers 1 and 2). Drawing broadly on the TPB framework (Paper 1), content analysed responses revealed people’s commonly held beliefs about the advantages and disadvantages (e.g., prolonging/saving life), important people or groups (e.g., family), and barriers and motivators (e.g., a family’s objection to donation), related to living and posthumous organ donation. Guided by a PWM perspective, Paper Two identified people’s commonly held perceptions of organ donors (e.g., altruistic and giving), non-donors (e.g., self-absorbed and unaware), and transplant recipients (e.g., unfortunate, and in some cases responsible/blameworthy for their predicament). Stage Two encompassed quantitative examinations of people’s decision makingfor living (Papers 3 and 4) and posthumous (Paper 5) organ donation, and for registering and discussing donation wishes (Papers 6 to 8) to test extensions to both the TPB and PWM. Comparisons of health students’ (N = 487) motivations and willingness for living related and anonymous donation (Paper 3) revealed that a person’s donor identity, attitude, past blood donation, and knowing a posthumous donor were four common determinants of willingness, with the results highlighting students’ identification as a living donor as an important motive. An extended PWM is presented in Papers Four and Five. University students’ (N = 284) willingness for living related and anonymous donation was tested in Paper Four with attitude, subjective norm, donor prototype similarity, and moral norm (but not donor prototype favourability) predicting students’ willingness to donate organs in both living situations. Students’ and community members’ (N = 471) posthumous organ donation willingness was assessed in Paper Five with attitude, subjective norm, past behaviour, moral norm, self-identity, and prior blood donation all significantly directly predicting posthumous donation willingness, with only an indirect role for organ donor prototype evaluations. The results of two studies examining people’s decisions to register and/or discuss their organ donation wishes are reported in Paper Six. People’s (N = 24) commonly held beliefs about communicating their organ donation wishes were explored initially in a TPB based qualitative elicitation study. The TPB belief determinants of intentions to register and discuss the donation preference were then assessed for people who had not previously communicated their donation wishes (N = 123). Behavioural and normative beliefs were important determinants of registering and discussing intentions; however, control beliefs influenced people’s registering intentions only. Paper Seven represented the first empirical test of the role of organ transplant recipient prototypes (i.e., perceptions of organ transplant recipients) in people’s (N = 465) decisions to register consent for organ donation. Two factors, Substance Use and Responsibility, were identified and Responsibility predicted people’s organ donor registration status. Results demonstrated that unregistered respondents were the most likely to evaluate transplant recipients negatively. Paper Eight established the role of organ donor prototype evaluations, within an extended TPB model, in predicting students’ and community members’ registering (n = 359) and discussing (n = 282) decisions. Results supported the utility of an extended TPB and suggested a role for donor prototype evaluations in predicting people’s discussing intentions only. Strong intentions to discuss donation wishes increased the likelihood that respondents reported discussing their decision 1-month later. Stage Three of the research program comprised an examination of augmented models (Paper 9). A test of the TPB augmented with elements from the social reaction pathway in the PWM, and extensions to these models was conducted to explore whether people’s registering (N = 339) and discussing (N = 315) decisions are explained via a reasoned (intention) and/or social reaction (willingness) pathway. Results suggested that people’s decisions to communicate their organ donation wishes may be better explained via the reasoned pathway, particularly for registering consent; however, discussing also involves reactive elements. Overall, the current research program represents an important step toward clarifying the relationship between people’s positive organ donation attitudes but low rates of organ donation and communication behaviours. Support has been demonstrated for the use of extensions to two complementary theories, the TPB and PWM, which can inform future research aiming to explicate further the organ donation attitude-behaviour relationship. The focus on a range of organ donation behaviours enables the identification of key targets for future interventions encouraging people’s posthumous and living donation decisions, and communication of their organ donation preference.

General Abstract Objective: In April 2006, the Scottish Liver Transplant Unit (SLTU) became the first NHS transplant unit in the UK to offer the option of Living Donor Liver Transplantation (LDLT). This represented a unique opportunity to evaluate the functional and psychosocial impact of LDLT upon healthy donors and their recipients. Subsequent aims were to investigate the challenge of introducing LDLT in Scotland and to establish the perceived deterrents and attractions of the procedure. An additional aim was to evaluate the impact of Living Donor Kidney Transplantation (LDKT) upon donors and recipients. Design: A series of cross sectional and longitudinal studies were designed for the purpose of this thesis (3 quantitative, 2 qualitative, and 1 mixed methods). Method: Self report questionnaires were used in each of the quantitative studies, with the addition of neuropsychological computerized tests in two studies. Semi-structured interviews were employed in the qualitative studies. Main Findings: •Prior to its introduction general support for the option of LDLT was found, although it was highlighted that the risk involved was not well understood by the general public. •Since becoming available LDLT has not been a readily acceptable treatment option from the perspective of patients due to the perceived risk for the donor, but it may be considered as a “last option”. Family members were motivated to save their loved one’s life but the personal implications of donating resulted in reconsideration of LDLT. • Staff at the SLTU perceived a lack of family commitment in relation to LDLT, which is explained as a cultural factor contributing to the slow uptake of LDLT. In Scotland, a donation from a younger to an older generation is not easily accepted. This, in addition to patients’ optimism that a deceased donation will arrive, and the poor health of potential donors, is thought to have affected the uptake of LDLT. As has the unit’s conservative approach to the promotion of LDLT. This approach is the result of a perceived reduction in the need for LDLT and a preference to avoid the risk to a healthy donor and conduct transplants with deceased donations. • In over 3 years, only one couple completed LDLT. The recipient showed functional and psychosocial improvement from pre to post procedure, whilst the donor showed slight deterioration in aspects of quality of life 6 weeks post donation, which did not always completely return to a baseline level by 6 months. The donor made sacrifices to provide her husband with a fresh start to life and unmet expectations were found to effect quality of life. •Willingness to become a liver donor is not thought to be influenced by the frame of the information provided. •Like the LDLT donor, LDKT donors experience some functional and psychosocial deterioration at 6 weeks post donation, but donors largely recover by 6 months post donation. However, the anticipated benefit to recipients was not evident and may not be quantifiable until after 6 months post operation. Conclusion: This thesis has added to current knowledge on living organ donation and specifically represents the first psychological evaluation of a UK LDLT programme. The slow uptake of LDLT was unexpected and has resulted in informative, novel research.

Cette présente thèse poursuit l’objectif central de mieux comprendre l’expérience vécue par des adolescents ayant reçu une transplantation rénale et celle des parents donneurs et non donneurs. Elle s’inspire d’une perspective développementale, où la construction identitaire des adolescents est évaluée qualitativement ainsi que l’expérience des parents, ceux-ci jouant un rôle important dans le développement de l’adolescent. Les adolescents vivant avec une maladie chronique rénale doivent relever les défis développementaux normaux ainsi que ceux associés à la maladie et aux traitements associés. Dans un contexte de transplantation d’organe, des défis additionnels, tels que le lien qui unit le receveur au donneur et les atteintes à l’image de soi rendent cette période charnière encore plus complexe. L’adolescence pose des défis importants pour la relation parent-enfant, tels que l’indépendance grandissante de l’adolescent, son désir d’autonomie, les changements au niveau de l’investissement et la nécessité du lien avec les figures d’attachement. Les jeunes greffés dénoncent leur impression d’être surprotégé et les parents de ces adolescents, eux aussi, se disent surprotecteurs. Pour certains parents, un deuxième rôle est incarné ; celui de donneur d’organe. Les influences que peut avoir le don sur le développement de l’adolescent sont toutefois inconnues. L’un des éléments centraux de cette thèse est également l’évaluation de la résolution du diagnostic pour les parents, ce processus ayant été défini comme un important précurseur de l’acceptation de la maladie à travers d’autres populations de parents d’enfants malades. Il est donc significatif de tenter de comprendre si ces parents sont arrivés à résoudre ou non le diagnostic de leur enfant et les pratiques parentales qui découlent du statut de résolution. Des parents étant encore habités par des questions et des émotions liées au moment du diagnostic sont susceptibles d’être envahis par celles-ci lorsque l’adolescent se montre peu adhérent ou par exemple, lorsqu’il s’engage dans des comportements à risque pour la survie du rein. Un devis qualitatif a été choisi, utilisant une entrevue semi-structurée réalisée auprès de chaque membre de la dyade. L’étude a été réalisée auprès de 10 adolescents et de 9 parents. Les analyses ont été guidées par la méthode de l’analyse phénoménologique interprétative (IPA). Au niveau de l’expérience parentale, les premières réactions au diagnostic indiquent la présence de trauma chez les parents au statut non résolu. Le statut de donneur aide la résolution des aspects négatifs de l’expérience, mais n’explique pas complètement le statut de résolution du diagnostic. Les préoccupations quant à l’adhérence sont centrales dans la relation que les parents ont avec leur adolescent. Les résultats appellent à un regard sur les besoins de soutien de ces parents et encore plus pour ceux dont la résolution est incomplète. Au niveau de l’évaluation du développement identitaire des adolescents, les résultats suggèrent que le développement est influencé par des préoccupations similaires chez les adolescents et ce peu importe le statut de donneur : l’image du corps, les relations sociales et l’anxiété par rapport au futur. Pour ceux ayant reçu d’un parent, des émotions uniques face au parent peuvent être un obstacle au développement d’une identité unique. L’évaluation des représentations d’attachement a permis de constater la prévalence élevée de types d’attachement insécurisant chez cet échantillon ainsi que la présence d’éléments traumatiques dans la relation d’attachement pour certains. / The central objective of this thesis is to better understand the experience of adolescents with a kidney transplant and the experience of their donor and non-donor parents. Inspired by a developmental perspective, and using a qualitative design, the thesis evaluates the identity development and the relationships between adolescents and their parents. It is in fact during adolescence that identity development becomes significant and youth living with a chronic kidney disease have to take up challenges related to their condition and its treatment as well as those of normal development. In context of a kidney transplant, additional challenges like the relationship to the donor and the impacts on body image makes the adolescence a more complex period. Adolescence brings significant challenges for the parent-child relationship, like growing needs of becoming more autonomous and independent and the investment and necessity of the proximity with attachment figures. Adolescents with a kidney transplant express their impression of being overprotected from their parents, and parents also consider themselves overprotective. Unique to the field of organ transplants, parents can be the donor for their child, but it is unclear whether this ability to give life for a second time has an impact the adolescent’s development and the experience of parents. One of the central elements of this thesis is the evaluation of diagnosis resolution for parents of adolescents with a kidney transplant, a process that has been recognized as a precursor of accepting the disease and is associated with proactive parental attitudes in other populations of parents with sick children. It is necessary to understand how parents of adolescent kidney recipients resolved the diagnosis and their parental practices according to the type of resolution they portray. Parents who still deal with unresolved emotions may feel overwhelmed when their adolescent is not compliant with the medical regiment or when he engages in risky behaviours for the survival of the graft. A qualitative design was chosen, using semi-structured interviews with each member of the dyads. Participants were 10 adolescents and 9 parents. Analyses were conducted according to the interpretative phenomenological analysis method (IPA). For the article with parents, results show that early reactions to the diagnosis suggest parents experienced trauma. Donor status seems to help resolve the negative aspects of the experience but does not fully explain diagnostic resolution status. For all parents, concerns over adherence are central to their relationship with their youth. Results call for attention to the support needs of all parents and particularly those with an unresolved status. For the article on identity development, results suggest identity development is influenced by similar concerns for all adolescents whether they received from a donor parent or not: body image, social relationships and anxiety for the future. For those who received from a parent donor, feelings toward the parent can be a challenge when building a unique identity. The evaluation of attachment representations informed us on the high presence of insecure attachments types among this specific sample of adolescents and on the presence of traumatic symptoms in the attachment relationship for some.

Indiana University-Purdue University Indianapolis (IUPUI) / Living donors have contributed about 6,000 kidneys per year in the past 10 years, but more than 100,000 individuals are still waiting for a kidney transplant. Living kidney donors undergo a major surgical procedure without direct medical benefit to themselves, but comprehensive follow-up information on living donors’ health is unfortunately limited. Expert recommendations suggest capturing clinical information beyond traditional sources to improve surveillance of co-morbid conditions from living kidney donors. Currently the United Network for Organ Sharing is responsible for collecting and reporting follow-up data for all living donors from U.S. transplant centers. Under policy implemented in February of 2013, transplant centers must submit follow-up date for two years after donation, but current processes often yield to incomplete and untimely reporting. This dissertation uses a statewide Health Information Exchange as a new clinical data source to 1) retrospectively identify a cohort of living kidney donors, 2) understand their follow-up care patterns, and 3) observe selected clinical outcomes including hypertension, diabetes and post-donation renal function.