Influence of Pediatric Patients’ Developmental or Chronic Health Condition Status as a Predictor of Parents’ Perceptions of Patient- and Family-Centered Care

Disparities in Patient- and Family-Centered Care Among Children With Health Conditions

“…Responses to each question were dichotomized to “always” or “not always” based on the skewness of responses and small sample sizes when we evaluated each developmental and health condition separately. Responses were positively skewed toward “4 = always.” This method has been used by previous studies ( 15 , 26 ). Each PFCC domain was evaluated separately.…”

“…Responses were positively skewed toward "4 = always." This method has been used by previous studies (15,26). Each PFCC domain was evaluated separately.…”

“…Although studies have evaluated parents’ perceptions of PFCC whose children have been diagnosed with obesity ( 12 ), functional limitations, and special health care needs ( 13 , 14 ), using nationally representative data, few studies have evaluated parents’ perceptions of PFCC whose children have been diagnosed with developmental and chronic health conditions. Previous research found that parents of children with any reported health conditions were less likely to report their health care provider exhibited all qualities expected of PFCC (listened carefully, explaining things, showed respect, and spent enough time with them) ( 15 ). Moreover, parents whose children had any development or chronic conditions were less likely to report their health care provider always explained their child's care thoroughly compared to those whose children did not have any conditions ( 15 ).…”

“…Previous research found that parents of children with any reported health conditions were less likely to report their health care provider exhibited all qualities expected of PFCC (listened carefully, explaining things, showed respect, and spent enough time with them) ( 15 ). Moreover, parents whose children had any development or chronic conditions were less likely to report their health care provider always explained their child's care thoroughly compared to those whose children did not have any conditions ( 15 ). There remains a gap in the literature on how PFCC differs for children with specific developmental and chronic conditions (e.g., allergies, asthma, autism, attention-deficit/hyperactive disorder [ADD/ADHD], and developmental delays) using nationally representative data and how other contributing factors play a role in associations between health condition prevalence and PFCC.…”

Parents’ experiences of children’s health care for hypermobile Ehlers–Danlos syndrome and hypermobility spectrum disorders

“…In the United Kingdom (UK), research has found that families of children with an undiagnosed condition have described health as requiring improvements to care-coordination, awareness, and advocacy, and that parents are emotionally impacted while managing uncertainty (Aldiss et al, 2021;Oulton et al, 2021). Similarly, research globally has identified that access to health services and information provision could be improved (Brannon, Ray, Lark, & Kindratt, 2021;Kiernan, Courtney, Ryan, McQuillan, & Guerin, 2020). Understanding the meaning and impact of healthcare experiences is therefore crucial to improve family-centered care.…”