In My Shoes: Children's Quality of Life after Heart Transplantation

Green, Angela; McSweeney, Jean C.; Ainley, Kathy; Bryant, Janet C.

doi:10.1177/152692480701700307

Cited by 24 publications

(13 citation statements)

References 11 publications

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“…One qualitative study found that pediatric cardiac transplantation patients described their lives as ‘mostly good' or ‘fun' and noted that they valued the normal aspects of life (110). Another study reported that the majority (78%) of patients exhibited improved psychological functioning after cardiac transplantation, which was maintained after a decade.…”

Section: Introductionmentioning

confidence: 99%

Long-term outcomes of children after solid organ transplantation

Kim

Marks

2014

Clinics

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Solid organ transplantation has transformed the lives of many children and adults by providing treatment for patients with organ failure who would have otherwise succumbed to their disease. The first successful transplant in 1954 was a kidney transplant between identical twins, which circumvented the problem of rejection from MHC incompatibility. Further progress in solid organ transplantation was enabled by the discovery of immunosuppressive agents such as corticosteroids and azathioprine in the 1950s and ciclosporin in 1970. Today, solid organ transplantation is a conventional treatment with improved patient and allograft survival rates. However, the challenge that lies ahead is to extend allograft survival time while simultaneously reducing the side effects of immunosuppression. This is particularly important for children who have irreversible organ failure and may require multiple transplants. Pediatric transplant teams also need to improve patient quality of life at a time of physical, emotional and psychosocial development. This review will elaborate on the long-term outcomes of children after kidney, liver, heart, lung and intestinal transplantation. As mortality rates after transplantation have declined, there has emerged an increased focus on reducing longer-term morbidity with improved outcomes in optimizing cardiovascular risk, renal impairment, growth and quality of life. Data were obtained from a review of the literature and particularly from national registries and databases such as the North American Pediatric Renal Trials and Collaborative Studies for the kidney, SPLIT for liver, International Society for Heart and Lung Transplantation and UNOS for intestinal transplantation.

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Section: Introductionmentioning

confidence: 99%

Long-term outcomes of children after solid organ transplantation

Kim

Marks

2014

Clinics

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“…The physical improvements afforded by transplant, and corresponding sense of freedom, are likely to be an important mechanism through which the increased quality of life that is observed in the literature occurs. Indeed, the ability to take part in desired activities, spend time with friends, and live a "normal" life are benefits that have been cited by other qualitative studies of life after transplant (6,39,40). Furthermore, it appears that the adolescents' improved physical functioning impacted upon their developmental trajectory, bringing their level of autonomy and independence in line with what would be expected for young people of their age.…”

Section: Discussionmentioning

confidence: 91%

Restriction and dependence to autonomy and freedom: Transformation in adolescent heart transplant recipients

Adams

Evangeli

Lunnon-Wood

et al. 2014

Pediatric Transplantation

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The process of heart transplantation poses numerous challenges and adaptive tasks for paediatric patients and their families. Few studies have examined how the experience of transplant interacts with developmental transitions such as adolescence, a period of significant change, and adjustment in itself. We explored adolescent heart transplant recipients' and their parents' experience of transplant from the point at which their heart condition was diagnosed to several months after transplantation. We adopted a developmental focus, to consider how participants negotiated the tasks of adolescence in the context of their transplant experiences. A qualitative approach was used to interview five adolescent-parent dyads, who reported few post-transplant complications, and the data were analysed according to the principles of IPA. Our findings revealed transplant to be a transformative experience, with two themes marking a contrast between pre- and post-transplant states: "Restriction and Dependence" and "Autonomy and Freedom." The themes are considered in relation to adolescent development. We propose that clinicians working with paediatric heart transplant recipients and their families need to consider the particular developmental challenges faced by adolescent patients and view the attainment of developmental milestones alongside physical and psychological markers of successful adjustment.

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“…As nursing practice has expanded so have the research methods used to study the meanings of health, illness, nursing, and culture (Roper & Shapira, 2000;Streubert & Carpenter, 2011). Nurses have used ethnography to study the nature of attachment in a NICU (Bialoskurski, Cox, & Hayes, 1999), cancer units (Germain, 1979), and children's quality of life after heart transplantation (Green, McSweeney, Ainley, & Bryant, 2007). Because ethnography is an approach to understanding human behavior, nursing research of nursing practice helps nurses to understand specific cultures of healthcare.…”

Section: Ethnographymentioning

confidence: 99%

NICU Culture of Care for Infants with Neonatal Abstinence Syndrome: A Focused Ethnography

Nelson

2016

Neonatal Network

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Results described the culture of care provided to infants with NAS by NICU nurses as evidenced by six themes: learn the baby (routine care, comfort care, environment, adequate rest and sleep, feeding), core team relationships (support, interpersonal relationships), role satisfaction (nurturer/comforter, becoming an expert), grief, making a difference (wonderful insanity, critical to them), and education and care of the mother.

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In My Shoes: Children's Quality of Life after Heart Transplantation

Cited by 24 publications

References 11 publications

Long-term outcomes of children after solid organ transplantation

Long-term outcomes of children after solid organ transplantation

Restriction and dependence to autonomy and freedom: Transformation in adolescent heart transplant recipients

NICU Culture of Care for Infants with Neonatal Abstinence Syndrome: A Focused Ethnography

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