Continuity of care for children with complex chronic health conditions: parents' perspectives

Abstract

BackgroundContinuity of care has been explored largely from academic and service provider perspectives, and in relation to adult patient/client groups. We interviewed parents of children with complex chronic health conditions to examine how their experiences and perceptions of continuity of care fit with these perspectives; and to identify the salient factors in the experience of, and factors contributing to, continuity in this population.MethodsParents of 47 elementary school-aged children with spina bifida, Down syndrome, attention-deficit/hyperactivity disorder, Duchenne muscular dystrophy or cystic fibrosis participated in semi-structured interviews. Parents described and mapped the pattern of their interactions with service providers over time in all domains relevant to their child's health, well-being, and development (medical, rehabilitational, educational, and social supportive services), with particular attention paid to their perceptions of connectedness or coherency in these interactions. Verbatim transcripts were analyzed thematically using a framework approach to impose structure regarding parents' perspectives on continuity of care.ResultsExisting academic concepts of relational, informational and management continuity were all discernable in parents' narratives. A thorough knowledge of the child on the part of service providers emerged as extremely important to parents; such knowledge was underpinned by continuity of personal relationships, principally, and also by written information. For this population, notions of continuity extend to the full range of service providers these children and families need to achieve optimal health status, and are not limited to physicians and nurses. Communication among providers was seen as integral to perceived continuity. Compartmentalization of services and information led to parents assuming a necessary, though at times, uncomfortable, coordinating role. Geographic factors, institutional structures and practices, provider attitudes, and, on occasion, parent preferences and judgments, were all found to create barriers to "seamless" management and provision of care continuity across providers, settings, and sectors.ConclusionsThese findings add new perspectives to the understanding of continuity within chronically ill children's health care. They are relevant to contemporary initiatives to improve continuity of services to children with special health care needs, demonstrate the need for parental support of their important role in maintaining continuity, and suggest avenues for further research.

Is mortality after childhood cancer dependent on social or economic resources of parents? A population‐based study

“…7 Alternatively, such parents may be able to make better use of what is offered, for example, by following recommendations for out-patient follow-up care more closely. 29 It is also possible that their children are healthier at the outset, or that they are more likely to avoid later health problems that are unrelated to the malignancy but that weaken the survival prospects. Given the widely accepted idea that the health care system should reach well out to everyone and the suspicion that this perhaps is not quite the case after all, a careful analysis of possible treatment differentials using longitudinal directly measured treatment data should be welcome in future studies.…”

Involving Parents in Managing Their Child's Long-Term Condition—A Concept Synthesis of Family-Centered Care and Partnership-in-Care

“…Mothers developed the necessary expertise to meet their child's needs and if necessary challenging health professionals' decisions. Gibsons ' (1999) seminal work linked the notion of expert mother to the process of empowerment and the concept of critical reflection, and has informed the ongoing debate on parental expertise in the parent-health care professional partnership (for example Dickinson, et al, 2006;Miller, et al 2009;Nightingale, Sinha & Swallow, 2014). Understanding the nature of expert parents in terms of the attributes that constitute becoming an expert, and the ways health professionals engage with and incorporate expert parents' opinions into care decisions when working with children with long-term conditions, may facilitate better parent-professional engagement and collaboration.…”

“…Understanding the nature of expert parents in terms of the attributes that constitute becoming an expert, and the ways health professionals engage with and incorporate expert parents' opinions into care decisions when working with children with long-term conditions, may facilitate better parent-professional engagement and collaboration. Evidence suggests the quality of parent-professional relationships is variable and the process of developing effective relationships with health professionals can be stressful for parents (Dickinson et al 2006;Miller, Condin, McKellin, Shaw, Klassen & Sheps, 2009;Nuutila & Salanterä, 2006).…”

Measuring parents’ perspective on continuity of care in children with special health care needs

“…First, we reviewed the literature about measures of continuity of care [9] and found that no measures for continuity of care specific for children. Thus, we chose to refer to Haggerty's generic measure of continuity of care and Miller's study [10,15,16] to generate item statements about continuity of care for children from parents' perspective. Second, we adapted 36 items from Haggerty's generic measure about care received by adult patients to parents' perspective on their child's care and to the Italian health care organisational context.…”

“…To assess continuity of care for these children, the critical role of parents, mediating between the child's needs and health care services and professionals, must be taken into account [10]. Parents should be involved in the assessment in order to measure and improve continuity of care for their children.…”