Parental experience of the neuromotor development of children with congenital heart disease: an exploratory qualitative study

Abstract

Background Children with severe congenital heart disease (CHD) are a group of children at risk for neurodevelopmental impairments. Motor development is the first domain to show a delay during the first year of life and may significantly contribute to parental concerns, stress, and difficulties in early child-parent attachment. Thus, the aim of the study was to better understand the wishes and concerns of parents of children with CHD and explore their experience of their children’s neuromotor development in the first year of life. Methods In this qualitative study, fourteen families were recruited. Their children were aged 1–3 years and had undergone open heart surgery within the first 6 months of life. Semi-structured interviews were audio-recorded and transcribed. The data was explored within an expert group, and a qualitative content analysis was conducted using VERBI MAXQDA software 2020. The study was conducted in accordance with the COREQ checklist. Results Parents of children with CHD reported several burdens and needs. Parental burdens concerned the child’s motor development, their own physical and psychological strain, and difficulties in communication with healthcare professionals. The needs, parents reported included supporting their child’s motor development, a medical coordinator, and better communication between healthcare professionals and parents. During the first phase of their children’s illness, parents underwent a dynamic transitional phase and expressed the need to rely on themselves, to trust their children’s abilities, and to regain self-determination in order to strengthen their self-confidence. Conclusions It is essential to involve parents of children with CHD at an early stage of decision-making. Parents are experts in their children and appreciate medical information provided by healthcare professionals. Interprofessional teamwork, partnering with parents, and continuous support are crucial to providing the best possible care for children and their families. Family-centred early motor intervention for CHD children might counteract the effect of parental overprotection and improve children’s motor development and thus strengthen child-parent interaction. In future work, we aim to evaluate a family-centred early motor intervention for children with CHD developed on the basis of this qualitative study. Trial registration Not applicable.

A family-tailored early motor intervention (EMI-Heart) for infants with complex congenital heart disease: study protocol for a feasibility RCT

“…Motor delay contributes to parental concerns and difficulties in child-parent wellbeing. In our qualitative study about the experience of parents of infants with CHD, parents reported that they were reluctant to challenge their infants [31]. They feared over-exerting them and watched them constantly.…”

“…The PT in turn shares her/his professional and empirical knowledge, clinical reasoning, and current research evidence in early intervention. b Encouragement of parents' confidence and family well-being In our qualitative study, parents expressed the need to strengthen their confidence and learn how to trust their children's abilities [31]. The PT uses different strategies to encourage parents' confidence and family well-being.…”

“…This impacts parent-child relationships because parental well-being is crucial for children's health and adjustment. Our study about the experience parents of children with CHD [31] underpins the importance of involving parents as experts in their children and as partners in decision-making about their care. Parents appreciate medical information that helps them to better understand and support their children's development and thus provide the best possible outcome for children and their families.…”

“…In the development of EMI-Heart, we performed interviews with parents of children with CHD who underwent openheart surgery within the first 6 months of life. The result of this qualitative study describes a variety of burdens and needs parents had experienced and which determines the design of EMI-Heart [31].…”

Motor development in infants with complex congenital heart disease: A longitudinal study

“…First, parents of infants with CCHD have major concerns about their infant's motor development and their own tendency to overprotect the child. 32 Second, current approaches in physical therapy use family coaching as a major strategy. The coaching strategy implies that both the infant's vulnerable physical condition and the parental stressful situation are taken into account.…”