Parents of Children with Down Syndrome and Their Interactions with Pediatric Health Care Providers

Abstract

Purpose The purpose of this study was to gain a deeper understanding of parent's, who have a child with Down Syndrome (DS), personal experiences with their child's primary pediatric health care providers (PPHCPs). Background Literature has shown that parents are often dissatisfied with health care providers interactions at the time of their child's initial diagnosis with DS. The literature is lacking in describing parental experiences, beyond the initial diagnosis, with PPHCPs, as their child ages. Method This was a qualitative inquiry using a descriptive phenomenological methodology. The parents were self-identified as the child's primary care-taker and the main parent that accompanies the child to health care appointments. The inquiry consisted of recorded, semi-structured interviews that were transcribed. Colaizzi's (1978) seven-step method and NVivo software were used to extract overall themes that describe the phenomenon. Results The sample consisted of 10 parents who have a school-aged child with DS between the ages of 6-11 years. The following nine parental themes emerged: (1) the need for their children with DS to be viewed and treated as individuals; (2) personal hopes and dreams for their children; (3) the need for respectful empathetic communication; (4) a PPHCP that is knowledgeable about DS; (5) acknowledgment that the parent is an expert regarding their child and is a partner in care; (6) PPHCP collaboration with specialists and navigation of care; (7) a desire for a trusting relationship with the PPHCP ensuring the child and parental needs will be met; (8) anticipatory guidance about their child's individual growth and development; (9) reliance upon the DS community for recommendations on resources for their child. Conclusions This study provided insight on communication and interactions between parents of school-aged children with DS and their PPHCPs. Parental needs are an important consideration in this setting. PPHCPs interactions with parents on condition-specific health education and anticipatory guidance can direct relationship-based care necessary to optimize outcomes of the child with DS. The purpose of this study was to gain a deeper understanding of parent's, who have a child with Down Syndrome (DS), personal experiences with their child's primary pediatric health care providers (PPHCPs). Literature has shown that parents are often dissatisfied with health care providers interactions at the time of their child's initial diagnosis with DS. The literature is lacking in describing parental experiences, beyond the initial diagnosis, with PPHCPs, as their child ages. This was a qualitative inquiry using a descriptive phenomenological methodology. The parents were self-identified as the child's primary care-taker and the main parent that accompanies the child to health care appointments. The inquiry consisted of recorded, semi-structured interviews that were transcribed. Colaizzi's (1978) seven-step method and NVivo software were used to extract overall themes that describe the phenomenon. The sample consisted of 10 parents who have a school-aged child with DS between the ages of 6-11 years. The following nine parental themes emerged: (1) the need for their children with DS to be viewed and treated as individuals; (2) personal hopes and dreams for their children; (3) the need for respectful empathetic communication; (4) a PPHCP that is knowledgeable about DS; (5) acknowledgment that the parent is an expert regarding their child and is a partner in care; (6) PPHCP collaboration with specialists and navigation of care; (7) a desire for a trusting relationship with the PPHCP ensuring the child and parental needs will be met; (8) anticipatory guidance about their child's individual growth and development; (9) reliance upon the DS community for recommendations on resources for their child. This study provided insight on communication and interactions between parents of school-aged children with DS and their PPHCPs. Parental needs are an important consideration in this setting. PPHCPs interactions with parents on condition-specific health education and anticipatory guidance can direct relationship-based care necessary to optimize outcomes of the child with DS.