Changes in Parental Hopes for Seriously Ill Children

Abstract

<p class="first" id="d5106773e147">Parents of seriously ill children reported hopes over time. The specific hopes and domains vary over time, although most hopes fell within 4 major areas. </p><div class="section"> <a class="named-anchor" id="s01"> <!-- named anchor --> </a> <h5 class="section-title" id="d5106773e151">BACKGROUND:</h5> <p id="d5106773e153">Hopes of parents of children with serious illness play an important role in decision-making and coping. Little is known about how parent hopes change over time. We describe the changes in parent hopes across multiple domains and time intervals, examine hopes in a subgroup of parents whose child died, and explore the maintenance of domains over time. </p> </div><div class="section"> <a class="named-anchor" id="s02"> <!-- named anchor --> </a> <h5 class="section-title" id="d5106773e156">METHODS:</h5> <p id="d5106773e158">In a mixed-methods prospective cohort study on decision-making, parents of seriously ill children reported demographic characteristics and hopes at baseline and reported any changes in hopes at 4-, 8-, 12-, 16-, and 20-month follow-up visits. Hopes were coded into 9 domains. Hope changes and domain changes were identified for each parent at each visit. </p> </div><div class="section"> <a class="named-anchor" id="s03"> <!-- named anchor --> </a> <h5 class="section-title" id="d5106773e161">RESULTS:</h5> <p id="d5106773e163">One hundred and ninety-nine parents of 158 patients most often reported hopes in the domains of quality of life (75%), physical body (69%), future well-being (47%), and medical care (34%). Hope percentages increased over time for quality of life (84%), future well-being (64%), and broader meaning (21%). The hope domains reported by parents of children who died were similar to the rest of the sample. The majority of parents who completed 5 to 6 follow-up visits changed at least 1 domain. At the individual parent level, some domains revealed considerable change over time, whereas other domains were stable among a subset of parents. </p> </div><div class="section"> <a class="named-anchor" id="s04"> <!-- named anchor --> </a> <h5 class="section-title" id="d5106773e166">CONCLUSIONS:</h5> <p id="d5106773e168">The specific hopes and overall areas of hope of parents of seriously ill children vary over time, although most hopes fall within 4 major areas. Accordingly, clinicians should regularly check with parents about their current hopes. </p> </div>