“It’s Just Going to a New Hospital … That’s It.” Or Is It? An Experiential Perspective on Moving From Pediatric to Adult Cancer Services

McCann, Lisa; Kearney, Nora; Wengström, Yvonne

doi:10.1097/ncc.0b013e3182a40f99

Cited by 14 publications

(9 citation statements)

References 34 publications

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“…The tools are useful in identifying areas in which an individual survivor needs more support or education. The most frequently identified barriers to transition in these publications related to knowledge, education and empowerment of the survivors as well as the knowledge and education of healthcare providers (193,194,(212)(213)(214)(215)(216)(217)(218)(219)(220)(221)(222)(223). This highlights that education of both survivors and their healthcare providers is integral part of successful transition.…”

Section: Transition From Paediatric To Adult Hsct Carementioning

confidence: 99%

Late Effects After Haematopoietic Stem Cell Transplantation in ALL, Long-Term Follow-Up and Transition: A Step Into Adult Life

et al. 2021

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Haematopoietic stem cell transplant (HSCT) can be a curative treatment for children and adolescents with very-high-risk acute lymphoblastic leukaemia (ALL). Improvements in supportive care and transplant techniques have led to increasing numbers of long-term survivors worldwide. However, conditioning regimens as well as transplant-related complications are associated with severe sequelae, impacting patients' quality of life. It is widely recognised that paediatric HSCT survivors must have timely access to life-long care and surveillance in order to prevent, ameliorate and manage all possible adverse late effects of HSCT. This is fundamentally important because it can both prevent ill health and optimise the quality and experience of survival following HSCT. Furthermore, it reduces the impact of preventable chronic illness on already under-resourced health services. In addition to late effects, survivors of paediatric ALL also have to deal with unique challenges associated with transition to adult services. In this review, we: (1) provide an overview of the potential late effects following HSCT for ALL in childhood and adolescence; (2) focus on the unique challenges of transition from paediatric care to adult services; and (3) provide a framework for long-term surveillance and medical care for survivors of paediatric ALL who have undergone HSCT.

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Section: Transition From Paediatric To Adult Hsct Carementioning

confidence: 99%

Late Effects After Haematopoietic Stem Cell Transplantation in ALL, Long-Term Follow-Up and Transition: A Step Into Adult Life

et al. 2021

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“…Their descriptions included lack of information about late effects, how to handle those and limited understanding from their surrounding networks, as well as from health care professionals conducting follow-ups (Hauken, et al, 2013). Meeting reality can also include the transition from the paediatric care setting to an adult care setting, something which can be experienced very differently among individuals and include many perspectives and dimensions (McCann, Kearney, & Wengström, 2013).…”

Section: Being Diagnosed With Cancer As a Childmentioning

confidence: 99%

Survivors of Childhood Cancer Report High Levels of Independence Five Years After Diagnosis

Jervaeus

Sandeberg

Johansson

et al. 2014

J Pediatr Oncol Nurs

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The aim was to compare self-rated independence in childhood cancer survivors 5 years after diagnosis with corresponding ratings during initial cancer treatment and those in a comparison group. A further aim was to determine whether and how certain clinical and demographic variables affected self-rated independence. Self-rated independence, a dimension included in the health-related quality of life (HRQoL) measure DISABKIDS Chronic Generic Measure (DCGM-37), was assessed in a Swedish cohort of survivors (n = 63, aged 12-22 years) and compared with ratings during initial cancer treatment and those in an age-matched comparison group (n = 257). Potential predictors of self-rated independence were estimated using multiple regression analysis. Survivors rated their independence significantly higher 5 years after diagnosis than during initial cancer treatment and higher than the comparison group. Neither demographic nor clinical variables (age, sex, diagnosis, initial cancer treatment) predicted self-rated independence 5 years post diagnosis. Five years after diagnosis, survivors of childhood cancer appear to have reached a satisfactory level of independence. However, survivors are likely to experience complications over the longer term, and therefore continued follow-up is warranted to follow possible changes in self-reported independence.

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“…Therefore, good QoL helps parents to give good care for children. Findings from qualitative pieces of research suggested there was a necessity to pay attention to QoL of parents during transitional period (McCann et al., 2014; Paine et al., 2014). QoL of parents with children having long‐term conditions often contain the physical, emotional, social and cognitive functioning dimensions (Varni et al., 2004), that are influenced by children (Moreira et al., 2013).…”

Section: Introductionmentioning

confidence: 99%

Influence of transition readiness from paediatric to adult health care on quality of life in child–parent dyads with long‐term conditions

Gong

Zhang

et al. 2021

Journal of Advanced Nursing

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Aim To delineate the impact of perspective of children's transition readiness from paediatric to adult health care on quality of life in child–parent dyads with long‐term conditions. We used Actor–Partner Interdependence Model to identify actor effects (effect of one's own transition readiness on one's own quality of life) and partner effects (effect of one's own transition readiness on the partner's quality of life). Design A multi‐centre cross‐sectional survey. Methods The study was conducted in two paediatric hospitals in China from October 2018‐August 2019. We used a researcher‐designed questionnaire to collect demographic and clinical characteristics. Furthermore, we used four questionnaires assessing transition readiness and quality of life in child and parent respectively to collect data from 370 child–parent dyads. Structural equation modelling was applied to estimate the effect of actor–partner interdependence models. Results The total score of transition readiness had two actor effects on total child and parent quality of life controlling for age (βchildren = 3.335, p = .032 and βparents = 8.952, p < .001), while only one actor effect controlling for gender (βparents = 8.891, p < .001). Specific transition readiness dimensions had different partner effects on different domains of children and parents' quality of life. Moreover, younger children and fathers had a better quality of life. Conclusion Our study verified inherently interpersonal relationship that transition readiness appeared to influence quality of life in child–parent dyads with long‐term conditions. Impact This study was the first to verify mutual influence of transition readiness and quality of life in child–parent dyad using actor–partner interdependence model. Nurses who design the transition promoting programs should consider the effective communication between healthcare provider and child–parent dyads and support parents' involvement to improve shared understanding about managing child's condition, especially for older children and mothers.

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“It’s Just Going to a New Hospital … That’s It.” Or Is It? An Experiential Perspective on Moving From Pediatric to Adult Cancer Services

Cited by 14 publications

References 34 publications

Late Effects After Haematopoietic Stem Cell Transplantation in ALL, Long-Term Follow-Up and Transition: A Step Into Adult Life

Late Effects After Haematopoietic Stem Cell Transplantation in ALL, Long-Term Follow-Up and Transition: A Step Into Adult Life

Survivors of Childhood Cancer Report High Levels of Independence Five Years After Diagnosis

Influence of transition readiness from paediatric to adult health care on quality of life in child–parent dyads with long‐term conditions

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