Pediatric Heart Transplantation: Transitioning to Adult Care

Pahl, Elfriede; Hof, Kathleen Van't; Andrei, Adin Cristian; Shankel, T.; Chinnock, Richard; Miyamoto, Shelley D.; Ambardekar, Amrut V.; Addonizio, Linda J.; Latif, F.; Lefkowitz, Debra S.; Goldberg, Lee R.; Hollander, Seth A.; Pham, Michael; Grady, Kathleen L.

doi:10.1016/j.healun.2017.01.712

Cited by 3 publications

(4 citation statements)

References 9 publications

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“…There is no definitive upper limit on the age of a young adult, although in relation to transplant surgical rates this has been suggested as 30 20 . If we consider this age bracket as indicative of young adulthood, it is also possible to identify major life changes that characterise this period of life which are qualitatively different to life in adolescence: for the heart transplant population these these have been cited to include "1) leaving home for the first time, 2) pursuing education / jobs, 3) establishing significant personal relationships, and 4) beginning to manage their own healthcare needs" 24 . Therefore, alongside their developing independence, the young adult is faced with decisions about their transplant healthcare and has much more personal responsibility for this in contrast to adolescents, where family and services will take a more active role in care planning.…”

mentioning

confidence: 99%

Illness, normality and identity: the experience of heart transplant as a young adult

Waldron

Malpus

Shearing

et al. 2016

Disability and Rehabilitation

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The need for support that recognizes specific challenges of transplant as a young adult is discussed (e.g. the development of age specific end of life pathways, improved communication between transplant recipients, their families and teams), including consideration of the impact of societal discourses (e.g. gift of life) which provided additional challenges for patients. IMPLICATIONS FOR REHABILITATION Heart transplant presents specific challenges according to the recipient's life stage. The needs of young adult recipients should be considered. Transplant professionals should consider providing opportunities for peer support and addressing the identities and values of young adult transplant recipients during rehabilitation.

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confidence: 99%

Illness, normality and identity: the experience of heart transplant as a young adult

Waldron

Malpus

Shearing

et al. 2016

Disability and Rehabilitation

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“…[3][4][5][6][7] Beyond their medical issues, these patients also face various other social and emotional challenges related to employment, marriage, and modification of lifestyle. 8 Unfortunately, their psychological conditions are often ignored and under-treated, even though they are at high risk for developing anxiety and mood disorders. 9 With better social supports, these patients can cultivate better coping mechanisms and can enhance their psychological well-being to overcome physical, emotional, and lifestyle limitations.…”

Section: A Dvances In Imaging Intensive Care Andmentioning

confidence: 99%

“…Adult patients with moderate CHD undergo multiple interventions that might result in long-term complications and sequelae, which lead to poorer quality of life compared with the normal population 3 7 Beyond their medical issues, these patients also face various other social and emotional challenges related to employment, marriage, and modification of lifestyle 8 . Unfortunately, their psychological conditions are often ignored and under-treated, even though they are at high risk for developing anxiety and mood disorders 9 .…”

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confidence: 99%

Types of social supports predicting health-related quality of life among adult patients with CHD in the Institut Jantung Negara (National Heart Institute), Malaysia

2016

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In total, 205 adult patients with CHD from the National Heart Institute, Malaysia, were recruited. Patients were first screened by cardiology consultants to ensure they fit the inclusion criteria before filling in questionnaires, which were medical outcome studies - social support survey and AQoL-8D. Results/conclusions All social supports and their subscales were found to have mild-to-moderate significant relationships with physical dimension, psychological dimension, and overall HRQoL; however, only positive interaction, marital status, and types of diagnosis were reported as predictors of HRQoL. Surprisingly, with regard to the physical dimension of quality of life, social supports were not significant predictors, but educational level, marital status, and types of diagnosis were significant predictors. Positive interaction, affectionate support, marital status, and types of diagnosis were again found to be predictors in the aspects of the psychological dimension of quality of life. In conclusion, positive interaction and affectionate support, which include elements of fun, relaxation, love, and care, should be included in the care of adult patients with CHD.

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“…A myriad of challenges faced by adolescents with CHD affects their well-being such as experience of physical complications, 5 mental health concerns, 6 relationship issues with family and peers, 7 adjustment issues in lifestyles, 8 and issues in health care. 7 A number of studies have suggested the services of formal Adolescent Transition to Adulthood programmes [9][10][11][12][13][14][15] as a way to promote well-being amongst adolescents with CHD, prevent discontinuity of care, and reduce mortality and morbidity. Unfortunately, these programmes are not widely available.…”

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confidence: 99%

The development and evaluation of a “HeartBEAT” Adolescent Transition Psychoeducational Program for adolescents with congenital heart defects: a preliminary study

et al. 2021

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Objectives:The present study aims to develop and test the effectiveness of a “HeartBEAT” Adolescent Transition Psychoeducation Program (ATPP) in facilitating the well-being of adolescents who have been diagnosed with congenital heart defects (CHD).Methods:The HeartBEAT ATPP was developed after reviewing existing transition interventions and determining adolescents’ needs. It was based upon two theories, namely the Shared Management Model and Antonovsky’s Salutogenic Model and included five aspects: (i) knowledge on illness and treatments, (ii) self-management and transition skills, (iii) purpose of life, (iv) social support, and (v) emotional regulation skills. Mixed-methods pilot testing was then conducted. Paired t-test was used to explore the effectiveness and qualitative interviews were also conducted.Results/Conclusions:Fourteen patients aged 16–19 enrolled in this study, but only eight patients successfully complete the programme. Results showed that a paired t-test was conducted to determine its effectiveness. Results showed that the programme had significantly increased self-management knowledge (t (7) = −6.328, p < 0.05) and affectionate support (t (7) = −1.029, p < 0.05). Qualitative findings also showed that all patients were able to share emotional regulation and identify their purpose of life after the programme. However, there was no significant increase in their self-management skills. In summary, the “HeartBEAT” ATPP has demonstrated efficacy in enhancing self-management knowledge, affectionate support, identifying the patients’ life plan, and enhancing the emotional regulation skills of the adolescents with CHD.

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Pediatric Heart Transplantation: Transitioning to Adult Care

Cited by 3 publications

References 9 publications

Illness, normality and identity: the experience of heart transplant as a young adult

Illness, normality and identity: the experience of heart transplant as a young adult

Types of social supports predicting health-related quality of life among adult patients with CHD in the Institut Jantung Negara (National Heart Institute), Malaysia

The development and evaluation of a “HeartBEAT” Adolescent Transition Psychoeducational Program for adolescents with congenital heart defects: a preliminary study

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