Research Article: From crisis to self-confidence and adaptation; Experiences of being a parent of a child with VACTERL association – A complex congenital malformation

Date Published: April 19, 2019

Publisher: Public Library of Science

Author(s): Ann-Marie Kassa, Helene Engstrand Lilja, Gunn Engvall, Stina Lou.

http://doi.org/10.1371/journal.pone.0215751

Abstract

Knowledge is scarce regarding mothers’ and fathers’ experiences of being a parent of a child with VACTERL association—a complex malformation. The aim of the study was to describe experiences of being a parent of a child with VACTERL association.

Semi-structured interviews were performed with ten mothers and nine fathers face-to-face or by telephone and analyzed by using Qualitative content analysis.

The parents described crisis reactions at the discovery of malformations in their child. Involvement in care was reported from the initial hospital admission until actively taking responsibility for treatments at home. Eventually the health condition became an integrated part of everyday life. The parents expressed the importance of meeting other families with a child with VACTERL. Descriptions were given of more or less professionalism with perceived discrepancies of knowledge and experience between the healthcare professionals in the tertiary hospital and those in the local hospital. Difficulties in receiving medical support during the initial period at home were described. Furthermore, emotional support and practical arrangements regarding parental accommodation and transportation varied.

Being a parent of a child with VACTERL association involves crisis, mixed emotional reactions and shared responsibility for the child´s treatment and care with the professional care providers. Psychological processing, good medical care and support from experts, and peer support from other parents is essential in the parents’ struggle to reach self-confidence and adaptation. A care plan with individualized tailored care for each child including a training and support plan for the parents is warranted. To reduce the described discrepancies in knowledge and experience between the local and tertiary hospital, video sessions with the parents and responsible professionals at the local and tertiary hospital could be an appropriate mode of transferring information at discharge and follow up of the child.

Partial Text

VACTERL association is a complex condition of congenital malformations that coexist in a single patient and the acronym stands for vertebral defects (V), anorectal malformations (A), cardiac defects (C), tracheo-esophageal fistula (TE), renal anomalies (R) and limb abnormalities (L). At least three of these conditions need to be present for a VACTERL diagnosis [1]. For survival, most children require surgery during the first days of life and often repeatedly during childhood [1]. In spite of advanced surgery, various physical sequelae may remain lifelong. Bowel dysfunction is common in children with anorectal malformations (ARM) often requiring daily treatment with enemas. Cardiac defects may result in impaired physical capacity and children with esophageal atresia (EA) often suffer from dysphagia, gastroesophageal reflux and respiratory symptoms [1–4]. Children with VACTERL association may need extra support and adjustments in school due to physical dysfunction and attention difficulties [4].

Parents’ experiences of being a parent of a child with VACTERL association are described in the categories: Becoming and being a parent of a child with a complex congenital malformation and Experiences of health care in conjunction with treatment of the child (Table 2). The content is described within ten subcategories illustrated by quotations followed by the study number of the respondents with F for father and M for mother. An overarching theme was formulated: From crisis through struggles with rays of hope, to self-confidence and adaptation. The crisis represents the shock and reactions; the struggles are all the effort needed to handle a child with malformations at the hospital and at home. The hope derives from professionalism among healthcare providers, improvements in the child’s health and shared experiences with peers until self-confidence and adaptation are reached and the health condition becomes an integrated part of life. No significant difference in length of mother’s and father’s interviews were found (p = 0,131). Both genders provided statement in all subcategories.

In the present study we have investigated experiences of being a parent of a child with VACTERL association. The parents described crisis reactions at the discovery of the malformations in their child. Gradually they actively took increasing responsibility for treatments of the child and performed procedures at home which were sometimes considered as demanding. Through medical care and support, support from peers and family, and noticing the child’s well-being and development, the parents could perceive hope. Eventually the health condition became an integrated part of everyday life. Descriptions were given of greater or less professionalism in healthcare professionals and difficulties in receiving medical support during the initial period at home. Furthermore, the parents described various extents of emotional support and practical arrangements regarding parental accommodation and transportation.

Being a parent of a child with VACTERL association involves crisis, mixed emotional reactions and shared responsibility for the child’s treatment and care. A child’s complex malformation often entails long time follow up, repeated episodes of anesthesia and surgery and difficulties in everyday functions. Psychological processing, good medical care and support from experts and other parents is essential in the parents’ struggle to reach self-confidence and adaptation. A care plan with individualized tailored care for each child including a training and support plan for the parents is warranted. To reduce the discrepancies in knowledge and experiences described between the local and tertiary hospital, video sessions with the parents and responsible professionals at the local and tertiary hospital could be an appropriate mode of transferring information at discharge and follow up of the child.

 

Source:

http://doi.org/10.1371/journal.pone.0215751

 

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