Perceived Injustice as a Determinant of the Severity of Post-traumatic Stress Symptoms Following Occupational Injury.

BACKGROUND: The present study assessed the role of perceived injustice in the experience and persistence of post-traumatic stress symptoms (PTSS) following work-related musculoskeletal injury. METHODS: The study sample consisted of 187 individuals who were absent from work as a result of a musculoskeletal injury. Participants completed measures of pain severity, perceived injustice, catastrophic thinking, post-traumatic stress symptoms, and disability on three occasions at three-week intervals. RESULTS: Consistent with previous research, correlational analyses revealed significant cross-sectional relations between pain and PTSS, and between perceived injustice and PTSS. Regression analysis on baseline data revealed that perceived injustice contributed significant variance to the prediction of PTSS, beyond the variance accounted for by pain severity and catastrophic thinking. Sequential analyses provided support for a bi-directional relation between perceived injustice and PTSS. Cross-lagged regression analyses showed that early changes in perceived injustice predicted later changes in PTSS and early changes in PTSS predicted later changes in perceived injustice. CONCLUSIONS: Possible linkages between perceived injustice and PTSS are discussed. The development of effective intervention techniques for targeting perceptions of injustice might be important for promoting recovery of PTSS consequent to musculoskeletal injury.

Qualitative Examination of the Experience of Perceived Injustice Following Disabling Occupational Injury.

PURPOSE: The primary objective of this study was to explore individuals' perspectives on the factors, situations or events that contributed to their perceptions of injustice following occupational injury. MATERIALS AND METHODS: The study sample consisted of 30 participants (18 women, 12 men) who had submitted a time-loss claim for a work-related musculoskeletal injury. Participants with elevated scores on a measure of perceived injustice were interviewed about the factors that contributed to their sense of injustice. A thematic analysis was conducted to identify the broad classes of situations or events that participants experienced as unjust in the weeks following occupational injury. RESULTS: Three dominant themes emerged from the interviews: (1) Invalidation, (2) Undeserved suffering and (3) Blame. Inductively derived subthemes reflected specific dimensions of post-injury experiences that contributed to participants' sense of injustice. CONCLUSIONS: Given that suffering and invalidating communication are potentially modifiable factors, there are grounds for optimism that intervention approaches can be developed to prevent or reduce perceptions of injustice in the aftermath of debilitating injury. The development of intervention approaches that are effective in preventing or reducing perceptions of injustice holds promise of contributing to more positive recovery outcomes in individuals who have sustained debilitating work injuries.

The relational landscape of bereavement after anticipated death: An interpretive model.

To complement existing literature and better capture the diversity of factors influencing grief, a more interpersonal understanding is required. Thus, we used the relational landscape's concept and empirical investigation to clarify the roles of individuals surrounding the bereaved. Sixteen interviews with bereaved individuals by euthanasia or natural death were analyzed using Interpretive Description. We present a model describing five types of actors in the environment of the bereaved and their ways of "being with" or giving space. We also include four lived landscapes in our model, with the purpose of describing how bereavement can be experienced within the social environment.

To Lose a Loved One by Medical Assistance in Dying or by Natural Death with Palliative Care: A Mixed Methods Comparison of Grief Experiences.

The integration of assisted dying into end-of-life care is raising reflections on bereavement. Patients and families may be faced with a choice between this option and natural death assisted by palliative care; a choice that may affect grief. Therefore, this study describes and compares grief experiences of individuals who have lost a loved one by medical assistance in dying or natural death with palliative care. A mixed design was used. Sixty bereaved individuals completed two grief questionnaires. The qualitative component consisted of 16 individual semi-structured interviews. We found no statistically significant differences between medically assisted and natural deaths, and scores did not suggest grief complications. Qualitative results are nuanced: positive and negative imprints may influence grief in both contexts. Hastened and natural deaths are death circumstances that seem to generally help ease mourning. However, they can still, in interaction with other risk factors, produce difficult experiences for some family caregivers.

Becoming unique: A qualitative study of identity development of adolescent kidney recipients.

Teenagers who receive a renal organ transplant have to take up the double challenge of identity development, the primary task of adolescence, and of overcoming the complexities of their illness. Previous qualitative studies found that adolescents felt that the organ transplant and its treatments mainly defined who they are. The relationship to the donor can be a source of concern for some of them, especially for those who received from a parent and feel an obligation to be obedient and grateful. While donor parents are known to interpret their gesture as giving life for a second time, no research to date has described how this particular gesture may influence adolescent development. The present article aims to examine and describe identity development of teenage kidney recipients in a context of parental or deceased donation. We used a qualitative design involving individual interviews with 10 adolescents. Five of them received from a donor parent, five from a deceased donor. Data were analyzed using IPA. Results suggest that identity development is influenced by similar concerns for all adolescents regardless of donor source: body image, social relationships, and anxiety about the future. One aspect that stood out from the discourse of those who received from a parent was feelings of guilt towards the donor when engaging in behaviors that could comprise graft survival, which was a challenge for identity development. Receiving the transplant freed teens from the struggle of just managing their illness and was a catalyst for exploration and engagement, which are crucial for identity development.

Mixed-methods evaluation of a transition and young adult clinic for kidney transplant recipients.

The aims of the present study were to describe the experiences of kidney transplant patients attending a young adult clinic or a regular adult clinic, to explore similarities and differences between the groups, and to conduct an evaluation of the clinical and psychosocial outcomes of the young adult clinic, by comparing these outcomes to those of the regular adult clinic. A mixed-methods design combining qualitative and quantitative data was used. Empirically validated questionnaires measuring self-determination theory variables, quality of life, and adherence were distributed to all consenting patients attending the YAC (n = 17) and RAC (n = 16). Semi-structured interviews were conducted with a subsample of the first (n = 10) and second group (n = 8), and analyzed using thematic analysis. Clinical outcomes were retrieved from medical records. Descriptive, correlational, and comparative analyses were performed. We found clinically significant differences on tacrolimus blood levels variability, self-reported adherence, and physical quality of life. Small and medium effect sizes were detected. No statistical differences were found. Statistically significant correlations were found between self-determination theory variables and both physical quality of life and different measures of adherence. Four themes characterized patients' experiences: resilience; relational needs and the therapeutic alliance; quest for balance; and quest for normalcy. The young adult clinic seems to meet its initial objectives and to make a difference particularly in the early period post-transition, but over time what matters most for patients is therapeutic alliance. Mental health issues need to be better addressed, and special attention should be paid to youths transplanted in an adult setting.

Resolution of diagnosis and parental attitudes among parents of adolescent kidney recipients.

The diagnosis of a chronic illness is described as an upsetting event that implies an emotional crisis for parents. Some are able to come to terms with their child's chronic condition and feel a sense of resolution, but for others, strong negative emotions persist through time. The present study examines diagnostic resolution among parents of teenagers with a transplant. The design was qualitative and involved individual interviews with nine parents. Five were donor to their child. Data were analyzed according to the principles of IPA. Early reactions to the diagnosis suggest that parents with an unresolved status experienced trauma. Many factors seem to contribute to diagnostic resolution such as good communication between spouses, positive relationship with the medical staff, and being the parent donor. For all parents, concerns over adherence are central to their relationship with their youth. Results call attention to the support needs of all parents and particularly those with an unresolved status.

Understanding How Bereaved Parents Cope With Their Grief to Inform the Services Provided to Them.

Our objective was to develop a rich description of how parents experience their grief in the first year after the death of their child, and how various bereavement follow-up and support services helped them during this time, with the aim of informing follow-up and support services offered to bereaved parents. Our findings situated parents' individual experiences of coping within the social and institutional contexts in which they grieved. In the first year after the death of their child, parents regulated their intense feelings of grief through loss-oriented, restoration-oriented, and/or meaning reconstruction strategies. Often, parents' relationships with others and many of the bereavement follow-up and support services helped them in this regard. This article also explores how the results may aid service providers in accompanying parents in a way that optimizes outcomes for these parents.

How Not to Let Secrets Out When Conducting Qualitative Research With Dyads.

Confidentiality is one of the cornerstones of research involving human participants. Researchers are the frontline gatekeepers of their participants' right to confidentiality, and situations can arise that challenge this responsibility. This is the case when individuals who have shared a common experience (i.e., dyads) are interviewed separately, but interview results are disseminated within the context of dyads. Based on our experience of conducting research with dyads and given how little literature is available to serve as guide, we set out to write this article to share the knowledge we acquired and the solutions we found. We will describe both the ethical challenges and the methodological decisions involved in conducting qualitative research with dyads. The article also describes different modalities of dyadic analysis, their benefits and drawbacks. This endeavor seems especially relevant as research with dyads is emerging in several domains involving couples, families, caregivers and health.

Transplant Trajectory and Relational Experience Within Living Kidney Dyads.

Living kidney donation is considered common practice across most Westernized countries. While extensive research has documented the experience of living donors, few studies have addressed the perspective of recipients, and even fewer have examined the experience of donor and recipient as an interactive dyad. In this study, our aim was to examine the reciprocal influence between donors and recipients across the transplantation process. We recruited a homogeneous sample of 10 donors and recipients, who were interviewed individually. Data were analyzed using interpretative phenomenological analysis. The presentation of results follows the stages of the transplantation process: the disease experience, the experience of offering and accepting a kidney, the screening period, the surgery, and the post-transplantation period. Results are discussed within the framework of Mauss's gift exchange theory, social roles, and altruism. This comprehensive description of the dyadic experience provides a way to frame and understand psychosocial aspects and relational implications of living renal transplantation.

The Strategies Used to Balance Health and Work Across the Solid Organ Transplantation Trajectory.

Introduction: Workers who undergo solid organ transplantation report frequent conflicts between the unpredictable demands of their health condition and the rigid requirements of their employer and of health services. The present study aimed to describe the self-management strategies adopted by workers while staying at work before transplantation and during sustainable return-to-work posttransplantation. Methods: Fifteen employed kidney, liver, and lung transplant recipients were recruited from 2 large urban university health centers in Montreal, Canada. Three focus groups were held, and thematic analysis was performed. Findings: Seven strategies were identified: responding promptly and consistently to fatigue-related needs, planning ahead with immediate supervisors while remaining strategic about when to disclose transplantation, requesting work accommodations, requesting flexibility in healthcare provision, consulting physicians about work-related issues, informing co-workers about work limitations and immunosuppression and asking not to be treated differently in the workplace. Conclusion: Access to work accommodations, support from physicians and flexibility in treatment and appointment schedules supported workers' ability to manage their health while staying at work before and after undergoing solid organ transplantation. In light of findings, it may be useful for healthcare professionals to address workers' concerns about work limitations and work accommodation implementation, especially when the illness-management burden increases before transplantation and during posttransplantation sick leave. Future studies could describe the strategies used by other important stakeholders when attempting to provide support to workers.

Assessment of identity and quality of life in diabetic and renal transplant adolescents in comparison to healthy adolescents.

Identity development represents a central task of adolescence. Identity achievement is characterized by a coherent sense of who one is following a period of exploration and can help navigate the challenges of adulthood. This study examined identity within a quality of life (QOL) context in 85 adolescents with a renal transplant or with Type 1 diabetes in comparison to 90 healthy controls. Results revealed significant differences in ideological identity, with patients showing higher levels of diffusion and controls showing higher levels of foreclosure. No differences with respect to interpersonal identity, QOL, perceived control over the QOL domains, and perceived opportunities for growth and development were found. Future research should assess identity and QOL over a longer period of time to determine whether differences between chronically ill and healthy young adults can be detected.

The psychosocial adjustment of kidney recipients across donation contexts.

The objective of this study was to investigate kidney recipients' experiences within deceased and living donation contexts and, in the latter, by donor relationship type, to identify differences by context and mechanisms by which the relationship with the donor may impact recipients' psychosocial well-being. Individual interviews were conducted with 12 participants and analyzed using Interpretative Phenomenological Analysis. Three themes emerged: (a) salience of and sensitivity toward sacrifice and loss, (b) honoring the sacrifice by honoring the gift, and (c) relational imbalance mirroring perceived burden of donation. Findings were contextualized in relation to the transplantation literature, and their clinical implications discussed.

The Psychosocial Adjustment of Kidney Recipients in Canada's Kidney Paired Donation Program.

Introduction: Kidney paired donation programs have been implemented globally. The involvement of at least 2 donors in these programs might exacerbate recipients' debt of gratitude and guilt, worries about the donor's health, and worries about graft failure documented by previous studies. However, there is an absence of research on the psychosocial implications of kidney paired donation. This study aimed to provide an in-depth examination of recipients' experience of kidney paired donation, with a focus on psychosocial adjustment. Methods/Approach: Individual interviews were conducted with 8 recipients who received a transplant through Canada's Kidney Paired Donation program. Data was analyzed using Interpretative Phenomenological Analysis. Findings: Four themes emerged: (a) an emotionally charged relationship with the known donor, (b) optimal distance regulation in the relationship with the anonymous donor, (c) kidney paired donation as a series of ups and downs, and (d) multilayered gratitude. Discussion: Findings are considered in relation to extant literature. Issues relevant to the transplant community's clinical and research efforts to provide kidney recipients responsive care are discussed.

The experience of kidney graft failure: patients' perspectives.

In this article we describe the phenomenon of kidney graft failure from the unique perspective of patients. Fifteen patients took part in semistructured interviews. We analyzed interviews using interpretative phenomenological analysis. The content analysis yielded five main emergent themes: life disruption, suffering, meaning making, resistance/acceptance, and social comparison. These results are discussed within the theoretical framework of psychosocial transition put forward by Parkes. A comprehensive description of the experience of kidney graft failure emerging from the patients' perspectives can provide a better understanding of the psychosocial aspects- not only the body aspects-of the phenomenon. It can help health care professionals better address patients' suffering, which is experienced by a person as a whole, and to offer support that promotes adaptation to kidney graft failure.

Are 'anonymous' and 'non-directed' prerequisites for living altruistic donation? The views of transplant physicians from France and Québec.

It can be argued that living altruistic donors should remain anonymous and should not express preferences in the selection of organ recipients. This study aimed to describe the views of transplant physicians in France and Québec regarding these issues. A total of 27 French and 19 Québec renal transplant physicians took part in individual, semi-directed interviews. Almost all of the physicians agreed that anonymity is mandatory in living altruistic donation (LAD). Regarding the issue of directed donation, most of the French physicians (78%) were opposed to any form of the practice, compared to only a third of their Québec colleagues (32%). We found that these positions were embedded in their respective cultural, legal and social contexts. These results afford a better understanding of these complex issues in two different cultural contexts, and will be useful in the development of international guidelines for LAD.

Pediatric palliative care in Canada and the United States: a qualitative metasummary of the needs of patients and families.

OBJECTIVE: Qualitative research is becoming more common in pediatric palliative care and end-of-life care. The present article systematically reviews and summarizes qualitative and survey-based research on pediatric palliative and end-of-life care pertaining to the needs of patients and their families. METHOD: Twenty-one qualitative and survey-based studies published between 2000 and 2010 that met the selection criteria were retrieved from MEDLINE, PsycINFO, and CINAHL. All studies reported on the needs of patients and families receiving pediatric palliative and end-of-life care--from either the patient's, parent's, sibling's, or health care provider's perspective. Findings from these studies were aggregated using a metasummary technique. RESULTS: Findings were extracted and grouped into the following 10 thematic domains pertaining to patient and family needs: interactions with staff, health care delivery and accessibility, information needs, bereavement needs, psychosocial needs, spiritual needs, pain and symptom management, cultural needs, sibling's needs, and decision making. CONCLUSIONS: The results of this metasummary highlight the needs of patients and families to be taken into consideration in the creation of high-quality pediatric palliative and end-of-life care services and guidelines.

Mindfulness-based intervention for teenagers with cancer: study protocol for a randomized controlled trial.

BACKGROUND: Individuals living with cancer must learn to face not only the physical symptoms of their condition, but also the anxiety and uncertainty related to the progression of the disease, the anticipation of physical and emotional pain related to illness and treatment, the significant changes implied in living with cancer, as well as the fear of recurrence after remission. Mindfulness-based meditation constitutes a promising option to alleviate these manifestations. METHODS/DESIGN: This article presents the rationale and protocol development for a research project aimed at evaluating the effects of a mindfulness-based meditation intervention on quality of life, sleep, and mood in adolescents with cancer compared to a control group. A prospective, longitudinal, experimental design involving three time points (baseline, post-intervention, and follow-up) and two groups (experimental and control) was developed for this project. Participants will be assigned randomly to either group. Eligible participants are adolescents aged 11 to 18 years with a diagnosis of cancer, with no specific selection/exclusion based on type, stage, or trajectory of cancer. A final sample size of 28 participants is targeted. Adolescents in the experimental group will be completing the mindfulness meditation intervention, taught by two trained therapists. The intervention will comprise of eight weekly sessions, lasting 90 min each. Once the follow-up assessment is completed by the experimental group, wait-list controls will be offered to complete the mindfulness-based program. Intra-group analyses will serve to evaluate the impact of the mindfulness-based meditation intervention on quality of life, sleep, and mood pre-post intervention, as well as follow-up. Analyses will also be used to carry out inter-group comparisons between the experimental group and the wait-list controls. Voluntary participation, risk of attrition, and the small sample size are potential limitations of this project. In spite of possible limitations, this project will be one among very few aimed at improving quality of life, sleep, and mood in adolescents living with cancer, will evaluate the potential benefits of such a practice on both psychological and physical health of youth with cancer, and help in creating mindfulness-based intervention programs, in order to provide the necessary psychological help to adolescents living with cancer. TRIAL REGISTRATION NUMBER: NCT01783418.

Donors and recipients of living kidney donation: a qualitative metasummary of their experiences.

With the notable growth in the qualitative investigation of living kidney donation, there is value in aggregating results from this body of research to learn from accumulated experience. The present paper aims to draw a complete portrait of living donors' and recipients' experience of donation by metasummarizing published studies. We found that donors' experience, particularly the decision-making process, has been more extensively studied than the recipients' perspective. Donors differ in their initial level of motivation to donate but on the whole report positive experiences and personal benefits. They also identify difficult periods and the need for additional resources. Recipients report an often positive but more ambivalent reaction to donation. In terms of relational issues between dyads, while the topic remains understudied, the donor-recipient relationship and gift reciprocity have received the most attention. Results are discussed in terms of their implications for future practice and research.

Patients' perspective on factors that facilitate transition from child-centered to adult-centered health care: a theory integrated metasummary of quantitative and qualitative studies.

PURPOSE: The purpose of this review was twofold. First, to summarize systematically the state of the research conducted on the perspective of patients on transition from child-centered care to adult-centered care (ACC). Second, based on this review of patients' perspective, to identify factors that facilitate transition to ACC. METHODS: Using a metasummary methodology, we extracted, grouped, and abstracted the findings from 46 qualitative and descriptive quantitative studies involving patients before and/or after their transfer to ACC. RESULTS: Empirical results on transition fall into four groups: (1) patients' feelings and concerns; (2) patients' recommendations about transition; (3) outcomes after transfer; and (4) mode of transfer. CONCLUSIONS: Results are discussed within a theoretical transition framework that emphasizes the importance of fulfilling five conditions that will lead to successful transition. Given our findings, this synthesis and framework can be used to tailor transition care and direct future research.