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Parental uncertainty about transferring their adolescent with congenital heart disease to adult care

Burström, Åsa; Acuna Mora, Mariela; Öjmyr-Joelsson, Maria; Sparud-Lundin, Carina LU ; Rydberg, Annika; Hanseus, Katarina LU ; Frenckner, Björn; Nisell, Margret; Moons, Philip and Bratt, Ewa Lena (2018) In Journal of Advanced Nursing
Abstract

Aims: To study parent's levels of uncertainty related to the transfer from pediatric to adult care in adolescents with congenital heart disease (CHD) and to identify potentially correlating factors. Background: Parents acknowledge that during transition they struggle with finding ways of feeling secure in handing over the responsibility and letting go of control. Well-prepared and informed parents who feel secure are most likely better skilled to support their adolescent and to hand over the responsibility. Design: A cross-sectional study. Methods: Overall, 351 parents were included (35% response rate). Parental uncertainty was assessed using a Linear Analogue Scale (0–100). Data were collected between January - August 2016. Potential... (More)

Aims: To study parent's levels of uncertainty related to the transfer from pediatric to adult care in adolescents with congenital heart disease (CHD) and to identify potentially correlating factors. Background: Parents acknowledge that during transition they struggle with finding ways of feeling secure in handing over the responsibility and letting go of control. Well-prepared and informed parents who feel secure are most likely better skilled to support their adolescent and to hand over the responsibility. Design: A cross-sectional study. Methods: Overall, 351 parents were included (35% response rate). Parental uncertainty was assessed using a Linear Analogue Scale (0–100). Data were collected between January - August 2016. Potential correlates were assessed using the readiness for transition questionnaire and sociodemographic data. Results: The mean parental uncertainty score was 42.5. Twenty-four percent of the parents had a very low level of uncertainty (score 0–10) and 7% had a very high level (score 91–100). Overall, 26% of the mothers and 36% of the fathers indicated that they had not started thinking of the transfer yet. The level of uncertainty was negatively associated with the level of perceived overall readiness. Adolescents' age, sex, CHD complexity, and parental age were not related to uncertainty. Conclusion: A wide range in the levels of uncertainty was found. Parents who were less involved in the care, or perceived their adolescent as readier for the transition, felt less uncertain. Still, thirty percent of the parents had not started to think about the transfer to adult care.

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author
publishing date
type
Contribution to journal
publication status
epub
subject
keywords
adolescents, congenital heart disease, nursing, parental uncertainty, readiness for transition, transfer, transition
in
Journal of Advanced Nursing
publisher
Wiley-Blackwell
external identifiers
  • scopus:85055214108
ISSN
0309-2402
DOI
10.1111/jan.13852
language
English
LU publication?
no
id
a329978f-b2bc-45b8-898f-69de93f86889
date added to LUP
2018-12-14 15:49:51
date last changed
2019-01-06 14:19:46
@article{a329978f-b2bc-45b8-898f-69de93f86889,
  abstract     = {<p>Aims: To study parent's levels of uncertainty related to the transfer from pediatric to adult care in adolescents with congenital heart disease (CHD) and to identify potentially correlating factors. Background: Parents acknowledge that during transition they struggle with finding ways of feeling secure in handing over the responsibility and letting go of control. Well-prepared and informed parents who feel secure are most likely better skilled to support their adolescent and to hand over the responsibility. Design: A cross-sectional study. Methods: Overall, 351 parents were included (35% response rate). Parental uncertainty was assessed using a Linear Analogue Scale (0–100). Data were collected between January - August 2016. Potential correlates were assessed using the readiness for transition questionnaire and sociodemographic data. Results: The mean parental uncertainty score was 42.5. Twenty-four percent of the parents had a very low level of uncertainty (score 0–10) and 7% had a very high level (score 91–100). Overall, 26% of the mothers and 36% of the fathers indicated that they had not started thinking of the transfer yet. The level of uncertainty was negatively associated with the level of perceived overall readiness. Adolescents' age, sex, CHD complexity, and parental age were not related to uncertainty. Conclusion: A wide range in the levels of uncertainty was found. Parents who were less involved in the care, or perceived their adolescent as readier for the transition, felt less uncertain. Still, thirty percent of the parents had not started to think about the transfer to adult care.</p>},
  author       = {Burström, Åsa and Acuna Mora, Mariela and Öjmyr-Joelsson, Maria and Sparud-Lundin, Carina and Rydberg, Annika and Hanseus, Katarina and Frenckner, Björn and Nisell, Margret and Moons, Philip and Bratt, Ewa Lena},
  issn         = {0309-2402},
  keyword      = {adolescents,congenital heart disease,nursing,parental uncertainty,readiness for transition,transfer,transition},
  language     = {eng},
  publisher    = {Wiley-Blackwell},
  series       = {Journal of Advanced Nursing},
  title        = {Parental uncertainty about transferring their adolescent with congenital heart disease to adult care},
  url          = {http://dx.doi.org/10.1111/jan.13852},
  year         = {2018},
}