Patient-reported outcome measures in pediatric solid organ transplantation: Exploring stakeholder perspectives on clinical implementation through qualitative description.

PURPOSE: Patient-reported outcome measures (PROMs) are standardized instruments used to collect data about the subjective assessment of medical care from the patient perspective. Implementing PROMs within pediatric clinical settings has gained increasing importance as health services prioritize patient-centred pediatric care. This study explores the perspectives of pediatric solid organ transplant patients, caregivers, and healthcare practitioners (HCPs) on implementing PROMs into clinical practice. METHODS: Qualitative description methods were used to elicit stakeholder perspectives. Semi-structured interviews were conducted across five Canadian transplant centres. Purposive sampling was used to obtain maximum variation across age, gender, and transplant program for all participants, as well as discipline for HCPs. RESULTS: The study included a total of 63 participants [patients (n = 20), caregivers (n = 22) and HCPs (n = 21)]. Nearly all participants endorsed the implementation of PROMs to enhance pediatric transplant clinical care. Three primary roles for PROMs emerged: (1) to bring a transplant patient's overall well-being into the clinical care conversation; (2) to improve patient communication and engagement; and, (3) to inform the practice of clinical pediatric transplant care. Insights for effective implementation included completing electronic PROMs remotely and prior to clinical appointments by patients who are eight to 10 years of age or older. CONCLUSIONS: This study contributes to current research that supports the use of PROMs in clinical pediatric care and guides their effective implementation into practice. Future directions include the development, usability testing, and evaluation of a proposed electronic PROM platform that will inform future research initiatives.

"Weighing the Pros and Cons of Everything": A Qualitative Descriptive Study Exploring Perspectives About Living Donor Kidney Transplantation From Parents of Chinese Canadian Pediatric Patients With Chronic Kidney Disease.

Background: As of 2021, more than 6000 children and youth in Canada were living with end-stage kidney disease (ESKD), for which kidney transplantation is considered the preferred treatment by health professionals. Research shows that living donor kidney transplantation (LDKT) has superior allograft and recipient survival compared to deceased donor kidney transplantation (DDKT). However, in a pediatric setting, the choice of LDKT or DDKT is a summative consideration of factors weighed carefully by the patient's family, health care team, and patient. Decision-making surrounding transplantation may be more complex for racial and ethnic minorities as culturally specific values and beliefs are interwoven within dominant understandings and concepts of health and accepted models of health care. For example, Chinese Canadians have an increased risk of ESKD, yet reduced access to LDKT compared to White patients, despite being the largest visible minority population in Canada. Objective: The objective of this qualitative study is to deepen our understandings of the decision-making process surrounding DDKT versus LDKT among parents of Chinese Canadian pediatric patients with chronic kidney disease (CKD). Design: Qualitative descriptive study design. Setting: The Nephrology Program at The Hospital for Sick Children in Toronto, Canada. Participants: Caregivers of Chinese Canadian patients with CKD, 18 years of age or older, and who spoke English, Cantonese, or Mandarin. Methods: One-on-one, semistructured interviews were conducted virtually, by a member of the research team and were audio-recorded and transcribed verbatim. Thematic analysis was used to explore participants' shared experience. Results: Seven interviews were conducted with 6 mothers and 1 father of 6 Chinese Canadian pediatric patients with CKD: 4 patients had undergone a kidney transplant, and 2 were not yet listed for transplant. Analysis of data highlighted that cultural influences affected whether parents shared with others about their child's illness and experience. The cultural understanding that it is inappropriate to burden others contributed to the creation of an isolating experience for participants. Cultural influences also impacted whether parents asked others to be a living donor as participants articulated this would place a physical burden on the living donor (e.g., potential risk to their health) and an emotional burden on the participant as they would be indebted to a willing donor. Ultimately, parents' decision to choose DDKT or LDKT for their patient-child was a result of evaluating both options carefully and within an understanding that the ideal treatment choice reflected what was best for all family members. Limitations: Findings reflect experiences of a small sample from a single recruitment site which may limit transferability. Conclusions: Parents in this study felt that they had access to the necessary evidence-based information to make an informed decision about the choice of DDKT versus LDKT for their child. Participant narratives described feeling isolated within cultural communities of family and friends and participants' suggestion of benefiting from increased support may guide future research directions. Practitioners can offer direct and indirect support to families, with recognition of the importance of cultural values and family-centered care on decision-making within families. Opportunities are needed for accessible, virtual social support platforms to increase parental feelings of culturally mediated peer support from parents who share similar experiences.

Contexte: En 2021, plus de 6000 enfants et jeunes au Canada vivaient avec une insuffisance rénale terminale (IRT), une affection pour laquelle la transplantation rénale est considérée comme le traitement préférentiel par les professionnels de la santé. La recherche montre que la transplantation d'un rein de donneur vivant (TRDV) présente des taux de survie du greffon et du receveur supérieurs à ceux de la transplantation d'un rein de donneur décédé (TRDD). En contexte pédiatrique, le choix entre la TRDV et la TRDD fait l'objet d'une évaluation sommative de facteurs soigneusement pesés par le patient, sa famille et l'équipe de soins. La prise de décision entourant la transplantation peut s'avérer encore plus complexe pour les personnes issues des minorités raciales et ethniques, car des valeurs et croyances spécifiques à la culture sont imbriquées dans les conceptions et concepts dominants de la santé et les modèles de soins acceptés. Les Canadiens d'origine chinoise, par exemple, présentent un risque accru d'IRT, mais leur accès à la TRDV est réduit par rapport aux patients d'origine caucasienne, bien qu'ils constituent la plus importante minorité visible dans la population Canadienne. Objectif: L'objectif de cette étude qualitative est d'approfondir notre compréhension du processus décisionnel entourant le choix entre la TRDD et la TRDV chez les parents de patients pédiatriques d'origine chinoise atteints d'insuffisance rénale chronique (IRC). Conception: Étude qualitative et descriptive. Cadre: Le program de néphrologie de l'Hospital for Sick Children de Toronto (Canada). Sujets: Des adultes proches aidants de patients Canadiens d'origine chinoise atteints d'IRC et parlant anglais, cantonais ou mandarin. Méthodologie: Des entrevues individuelles semi-structurées ont été menées en mode virtuel par un membre de l'équipe de recherche; les entrevues ont été enregistrées (audio) et transcrites textuellement. L'analyze thématique a été utilisée pour explorer l'expérience commune des participants. Résultats: Sept entrevues ont été menées auprès des parents (6 mères et un père) de 6 patients pédiatriques Canadiens d'origine chinoise atteints d'IRC: quatre avaient subi une greffe rénale, les deux autres n'étaient pas encore inscrits sur la liste pour une transplantation. L'analyze des données a révélé que les influences culturelles affectaient la façon dont les parents parlent de la maladie et de l'expérience de leur enfant avec d'autres personnes. La conception d'origine culturelle selon laquelle il n'est pas approprié d'accabler les autres a contribué à créer de l'isolement chez les participants. Les influences culturelles ont également interféré dans le fait de demander ou non à d'autres personnes d'être donneurs vivants; les participants ont expliqué que le don vivant imposait un fardeau physique au donneur vivant (p. ex., un risque pour sa santé) et un fardeau émotionnel au participant, car ceux-ci seraient redevables au donneur consentant. La décision des parents de choisir la TRDD ou la TRDV pour leur enfant aura finalement été le résultat d'une évaluation minutieuse des deux options, avec la perspective que le choix de traitement idéal reflétait ce qui était le mieux pour tous les membres de la famille. Limites: Ces résultats reflètent les expériences d'un faible échantillon de sujets provenant d'un seul centre, ce qui peut limiter la transférabilité. Conclusion: Les parents interrogés pour cette étude estimaient avoir eu accès aux informations factuelles nécessaires pour prendre une décision éclairée dans leur choix entre la TRDD et la TRDV pour leur enfant. Les récits des participants ont décrit leur sentiment d'isolement au sein des communautés culturelles de la famille et des amis; la suggestion des participants de bénéficier d'un soutien accru pourrait guider les orientations futures de la recherche. Les praticiens peuvent offrir un soutien direct et indirect aux familles en reconnaissant l'importance des valeurs culturelles et des soins centrés sur la famille dans la prise de décisions par les familles. Il est nécessaire de créer des plateformes de soutien social virtuelles et accessibles, afin que les parents aient le sentiment de bénéficier davantage du soutien culturel d'autres parents qui partagent des expériences similaires.

Access to and Health Outcomes of Pediatric Solid Organ Transplantation for Indigenous Children in 4 Settler-colonial Countries: A Scoping Review.

Solid organ transplantation (SOT) is considered the optimal treatment for children with end-stage organ failure; however, increased efforts are needed to understand the gap surrounding equitable access to and health outcomes of SOT for Indigenous children. This scoping review summarizes the literature on the characteristics of access to and health outcomes of pediatric SOT among Indigenous children in the settler-colonial states of Canada, Aotearoa New Zealand, Australia, and the United States. A search was performed on MEDLINE, EMBASE, PsycINFO, and CINAHL for studies matching preestablished eligibility criteria from inception to November 2021. A preliminary gray literature search was also conducted. Twenty-four studies published between 1996 and 2021 were included. Studies addressed Indigenous pediatric populations within the United States (n = 7), Canada (n = 6), Aotearoa New Zealand (n = 5), Australia (n = 5), and Aotearoa New Zealand and Australia combined (n = 1). Findings showed that Indigenous children experienced longer time on dialysis, lower rates of preemptive and living donor kidney transplantation, and disparities in patient and graft outcomes after kidney transplantation. There were mixed findings about access to liver transplantation for Indigenous children and comparable findings for graft and patient outcomes after liver transplantation. Social determinants of health, such as geographic remoteness, lack of living donors, and traditional spiritual beliefs, may affect SOT access and outcomes for Indigenous children. Evidence gaps emphasize the need for action-based initiatives within SOT that prioritize research with and for Indigenous pediatric populations. Future research should include community-engaged methodologies, situated within local community contexts, to inform culturally safe care for Indigenous children.

The lived experiences of children and adolescents with end-stage renal disease.

Relatively little is known about how children perceive and manage end-stage renal disease (ESRD) in daily life. To address this gap in the literature, the experiences and perceptions of children with ESRD were examined in this study. Study design comprised ethnographic interviews with 25 children and adolescents ages 7 to 18 years. Semistructured interviews were audiotaped, transcribed verbatim, and subjected to content analysis. Participants received a range of ESRD treatments including transplantation and dialysis. Findings indicate that ESRD has a profound impact on children. They described a range of challenges and experiences including not feeling "normal"; developing ESRD knowledge; frequent absence from school; gaining responsibility for ESRD care; relying on family, friends, and health care providers; and adjusting despite adversity. These findings depict a multifaceted, dynamic perspective engendered in tensions as children and adolescents grapple with adversity yet experience personal growth and resiliency. Implications and recommendations for clinical practice and research are discussed.

Pediatric epidemic crisis: Lessons for policy and practice development.

OBJECTIVES: This research study addresses health policy and patient care considerations, and outlines policy and practice implications resulting from a crisis in a pediatric setting. This crisis, an epidemic outbreak of Severe Acute Respiratory Syndrome (SARS), dramatically impacted the delivery of health care in Canada. Despite the passage of time since the last diagnosed case of SARS in April 2004, researchers have warned the global community to be prepared for future outbreaks of SARS or other infectious diseases. METHODS: Qualitative interviews were conducted with 23 participants representing key stakeholder groups: (a) pediatric patients with probable or suspected SARS, (b) their parents, and (c) health care professionals providing direct care to SARS patients. RESULTS: Participants conveyed key areas in which health policy and practice were affected. These included the development of communication strategies for responding to SARS; easing vulnerability among all stakeholders; and the rapid development of practice guidelines. CONCLUSION: Given the continuing threat of current and future airborne viruses with potential for epidemic spread and devastating outcomes, preparedness strategies are certainly needed. Effective strategies in pediatrics include practices that provide family centered care while minimizing disease transmission. Toward this end, lessons learned from previous outbreaks merit consideration and may inform future epidemics.

Bowlby and Robertson revisited: the impact of isolation on hospitalized children during SARS.

Psychosocial issues related to pediatric isolation remain relevant to both clinical practice and research. The early theories of Bowlby and Robertson are central to this discussion for it was predominantly their work that elicited several policy changes aimed at improving psychosocial care in pediatric settings. Recognizing the significant effects of isolating hospitalized children is just as relevant today where serious infectious diseases can lead to separation of family members. An ethnographic, qualitative study examined the experiences and perspectives of children hospitalized because of SARS (severe acute respiratory syndrome), their parents, and pediatric health care providers. The sample included 23 participants: five children, 10 parents, and eight health care providers. Data analyses illuminated a range of perceived experiences for this triadic sample. Themes related to the effects of social isolation on children were predominant. They included emotional upheaval, changes in parental and professional roles, and familial experiences following hospital discharge. Finally, the paper draws on the findings of the present study and other recent work in offering recommendations for effective clinical approaches in the event of future outbreaks.

When family-centered care is challenged by infectious disease: pediatric health care delivery during the SARS outbreaks.

In this ethnographic study, the authors examined the experiences and perspectives of children hospitalized because of SARS (severe acute respiratory syndrome), their parents, and pediatric health care providers. The sample included 5 children, 10 parents, and 8 health care providers who were directly affected by SARS during the time of the outbreaks and extreme infection control procedures. The data analyses illuminated a range of perceived experiences for this triadic sample. Issues related to social isolation due to infection control precautions were predominant. Themes included emotional upheaval, communication challenges, and changes in parental and professional roles. These findings reveal the cogent effects of SARS on family-centered care. The notion of providing family-centered care within an environment plagued by an infectious outbreak suggests an omniously difficult task. Efforts must be made to optimize family-centered care despite obstacles. The authors suggest effective clinical approaches in the event of future outbreaks.

An evaluation of pediatric asthma educational resources.

The purpose of this study was to evaluate newly developed educational resources for children with asthma. Children with asthma, their parents, and pediatric health care professionals were invited to review age-appropriate asthma resources. Key findings revealed: (1) the perceived usefulness of these resources, particularly for creating discussion opportunities between children and their caregivers through implemented resource use; (2) the need for health education materials to balance goals of depth of information versus child enjoyment in order to increase effective knowledge transfer and application; and (3) a renewed call for future educational resources to be both relevant and interactive in their outreach and engagement of children, potentially involving mediums of advanced technology. Clinical experience and the literature note a current lack of pediatric asthma education materials. The positive findings of this review of novel educational materials in asthma address an important gap relative to pediatric practice, resource evaluation, and knowledge translation.

Experiences and resistance strategies utilized by fathers of children with cancer.

This study examines the experiences of fathers of children diagnosed with cancer. In this grounded theory study, participating fathers were qualitatively interviewed using a theoretical sampling approach. Results indicate fathers to be profoundly affected by their child's condition of cancer. Fathers' experiences include isolation and heightened sadness and uncertainty. Paternal roles comprise providing family support, sufficient resources, and seeking to maintain family stabilization. Post-diagnosis lived experience is described to hold new meaning as fathers reconcile the presence of childhood cancer within the life of their child and family. Strategies of resistance are demonstrated as fathers combat the devastating impacts of cancer through a commitment to family integration, healthy personal lifestyle and attitudes, support seeking, spirituality, and reframing of priorities. An emerging model is presented, as are implications for practice and recommendations.

Perspectives of mothers with substance use problems on father involvement.

BACKGROUND: A number of complex factors contribute to pregnant and parenting women's alcohol and substance use. To date, little research has focused on the implications, meaning and experiences of father involvement on mothers with substance use problems. OBJECTIVE: The current study explores the experiences of mothers with substance use problems with respect to the role, impact and meaning of father involvement. METHODS: This study conducted two focus groups utilizing a phenomenological approach. Mothers receiving clinical services at a comprehensive, community based program serving pregnant and parenting women with substance use problems were recruited to participate in this research. RESULTS: The meaning of father involvement among this group of women centered on four dimensions: emotional support, financial contributions to the family, amount and quality of time spent with the children and the family, and was dependent upon the particular expectations of the mother involved. Barriers and influences of father involvement were identified. The nature of father involvement had negative and positive impacts on participants. DISCUSSION: Maternal use of alcohol is a complex issue, one factor often ignored in father involvement. For mothers with substance use problems father involvement has a number of implications, both positive and negative.