Access to health care is a fundamental value of our Canadian health care system. Yet, missed appointments are a daily reality across Canadian paediatric outpatient settings and can jeopardize care. Young children who miss appointments are reported as having more adverse outcomes (1). Missed appointments are viewed as inefficient and a waste of valuable health care resources. As a result, many outpatient services have adopted a policy regarding discharge from service after a specific number of missed appointments. Parents who miss appointments are labelled pejoratively with terms such as ‘no-shows’, ‘noncompliant’, ‘nonattenders’, ‘hard to reach’, ‘disinterested’ or ‘lacking motivation’—all terms blaming missed appointments on families. To date, researchers have focused primarily on the predictors of attendance and nonattendance and its impact on service delivery (2). Engaging parents as an approach to deepen our understanding of missed appointments is rarely reported in the literature. The aim of our study was to engage mothers to share their experiences in missing outpatient neonatal follow-up (NFU) programs.
The current study employed data gathered in a larger multi-site qualitative descriptive study of mothers’ and health care providers’ perspectives of the barriers and facilitators to attendance at Canadian NFU programs (3). Mothers were purposively recruited in proportion to published nonattendance (19%) and attendance patterns for NFU programs in Canada (2). Twelve mothers were recruited from two NFU programs located in Calgary and Hamilton. The sample for this report consisted of all four mothers who missed multiple appointments, two from each NFU program. Three of the four mothers were between 20 and 29 years old, none had completed high-school education, and three were lone parents. In comparison, the remaining eight mothers who regularly attended appointments were aged between 30 and 49 years, had completed high school or university/college education and 6 of the 8 were in two-parent families.
Following informed consent, mothers participated in semi-structured individual interviews that were audio recorded, transcribed verbatim and analyzed using thematic analysis. The key findings indicate that participant mothers faced multiple common barriers. All four nonattending participants described feeling overwhelmed, having few or no friends and strained relationships with their family of origin that resulted in either infrequent or no family contact. Their incomes, derived from social assistance or low-income employment, were inadequate for transportation, childcare and other needed services (e.g., telephone, Internet). They all lived in temporary or subsidized housing, a situation that required them to move frequently. Public transit was their primary method for travelling to appointments with one-way travel times of up to 2 h. Child protection services were involved across all four families, either during the neonatal intensive care hospitalization, following discharge home, or both. All mothers described adverse childhood experiences, first pregnancies during adolescence, and having chronic health conditions such as substance dependence, mental health problems and/or cancer. When attending NFU after having missed prior appointments, they reported feeling pressured and judged by health care providers. All described prioritizing attendance at appointments based on how obvious their child’s problem was from their perspective.
The study findings indicate that a missed appointment is more complicated than previously assumed and reported. Mothers who missed appointments were experiencing cumulative life-long stressors (2) that had resulted in isolation, low social support and low socioeconomic status. Multiple stressors, in turn, made it difficult for mothers to engage with and access health services. Engagement was jeopardized further when they experienced ‘feeling judged’ for having missed appointments. Rather than a discharge from service policy, our data indicate that as a first step, mothers require additional supports. Without a ladder of support to services as described by Halfon (4), ‘health risks and disabling conditions compound over time’ (3, p. 915). A social paediatrics (5) approach is needed: that is an approach that addresses the social context of the entire family in addition to the child’s health needs.
The primary strength of this study was the successful recruitment of mothers who are typically very difficult to reach and are, therefore, not often represented in research. The study limitations are the small sample size involving only English-speaking nonimmigrant participants. In spite of this, the findings provide new insight into the complex barriers experienced by mothers of low social means in accessing NFU services for their young children. Clinical services can improve access through active outreach, community or home-based visits, and a designated key contact worker with relationship-building skills (6). Further research is required to address enhanced parent engagement, support and coaching embedded within current paediatric service models.
References
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