Kim Mooney-Doyle1, Janet A Deatrick2. 1. The Center for Global Women's Health and The Center for Health Equity Research,University of Pennsylvania School of Nursing,Philadelphia,Pennsylvania. 2. Center for Health Equity Research,University of Pennsylvania School of Nursing,Philadelphia,Pennsylvania.
Abstract
OBJECTIVE: Uncovering what it means to be a parent during the extraordinary time of a child's life-threatening condition (LTC) is important for understanding family goals, decision making, and the work of parenting within this context. METHOD: Qualitative descriptive methods were employed to describe the everyday experience of parenting both children who have an LTC and their healthy siblings. RESULTS: Some 31 parents of 28 children with an LTC who have healthy siblings participated in our study. Four themes emerged from the data that describe a parental desire to maintain emotional connection with all of their children, how parents use cues from their children to know them better and develop parenting strategies, how parents change as a result of caring for a child with an LTC, and how they strive to decrease suffering for all of their children. SIGNIFICANCE OF RESULTS: The findings of our study have implications for clinical practice, family-focused research, and health policy pertaining to families of children with life-threatening conditions.
OBJECTIVE: Uncovering what it means to be a parent during the extraordinary time of a child's life-threatening condition (LTC) is important for understanding family goals, decision making, and the work of parenting within this context. METHOD: Qualitative descriptive methods were employed to describe the everyday experience of parenting both children who have an LTC and their healthy siblings. RESULTS: Some 31 parents of 28 children with an LTC who have healthy siblings participated in our study. Four themes emerged from the data that describe a parental desire to maintain emotional connection with all of their children, how parents use cues from their children to know them better and develop parenting strategies, how parents change as a result of caring for a child with an LTC, and how they strive to decrease suffering for all of their children. SIGNIFICANCE OF RESULTS: The findings of our study have implications for clinical practice, family-focused research, and health policy pertaining to families of children with life-threatening conditions.
Authors: Kim Mooney-Doyle; Janet A Deatrick; Connie M Ulrich; Salimah H Meghani; Chris Feudtner Journal: J Palliat Med Date: 2017-10-03 Impact factor: 2.947
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Authors: Lisa M Verberne; Marijke C Kars; Antoinette Y N Schouten-van Meeteren; Diederik K Bosman; Derk A Colenbrander; Martha A Grootenhuis; Johannes J M van Delden Journal: Eur J Pediatr Date: 2017-01-11 Impact factor: 3.183
Authors: Lourdes Chocarro González; Manuel Rigal Andrés; Julio C de la Torre-Montero; Marta Barceló Escario; Ricardo Martino Alba Journal: Children (Basel) Date: 2021-02-26