Douglas L. Hill

Regoaling: a conceptual model of how parents of children with serious illness change medical care goals

BackgroundParents of seriously ill children participate in making difficult medical decisions for their child. In some cases, parents face situations where their initial goals, such as curing the condition, may have become exceedingly unlikely. While some parents continue to pursue these goals, others relinquish their initial goals and generate new goals such as maintaining the child’s quality of life. We call this process of transitioning from one set of goals to another regoaling.DiscussionRegoaling involves factors that either promote or inhibit the regoaling process, including disengagement from goals, reengagement in new goals, positive and negative affect, and hopeful thinking. We examine these factors in the context of parental decision making for a seriously ill child, presenting a dynamic conceptual model of regoaling. This model highlights four research questions that will be empirically tested in an ongoing longitudinal study of medical decision making among parents of children with serious illness. Additionally, we consider potential clinical implications of regoaling for the practice of pediatric palliative care.SummaryThe psychosocial model of regoaling by parents of children with a serious illness predicts that parents who experience both positive and negative affect and hopeful patterns of thought will be more likely to relinquish one set of goals and pursue a new set of goals. A greater understanding of how parents undergo this transition may enable clinicians to better support them through this difficult process.

Resting energy expenditure and adiposity accretion among children with Down syndrome: a 3-year prospective study.

Background:Children with Down syndrome (DS) have a higher prevalence of obesity than other children. Whether this increased risk for obesity is due to a lower resting energy expenditure (REE) is controversial. Our study assessed whether (1) the REE of children with DS adjusted for fat-free mass (FFM) was lower than that of sibling controls, and (2) the changes in fat mass (FM) over 3 years were associated with FFM-adjusted baseline REE.Methods:This study used cross-sectional and prospective cohort designs. Four annual measurement visits were conducted with 28 children with DS and 35 sibling controls aged 3–10years. REE and serum thyroxine (T4) were measured at baseline. Anthropometry, skinfold thickness measures, and, in a subsample, dual-energy x-ray absorptiometry (DXA) were used at each visit to calculate FM.Results:Children with DS had significantly lower REE adjusted for FFM (−78 kcal/day, 95% CI: −133 to −27, P=0.003). The difference remained significant after adjustment for FM, sex and African ancestry (−49 kcal/day, 95% CI: −94 to −4, P=0.03). In the longitudinal analysis, the baseline REE adjusted for baseline FFM was not predictive of FM accretion over time (P=0.8).Conclusion:Children with DS have lower REE than sibling controls, but REE was not associated with changes in FM over time. The results suggest that the lower REE of children with DS does not explain their increased risk for obesity.

Problems and hopes perceived by mothers, fathers and physicians of children receiving palliative care

The quality of shared decision making for children with serious illness may depend on whether parents and physicians share similar perceptions of problems and hopes for the child.

Parent Coping Support Interventions During Acute Pediatric Hospitalizations: A Meta-Analysis.

In this systematic literature review, we found evidence that parents of hospitalized children who received coping support interventions had better emotional well-being. CONTEXT: Parents may experience psychological distress when a child is acutely hospitalized, which can negatively affect child outcomes. Interventions designed to support parents’ coping have the potential to mitigate this distress. OBJECTIVE: To describe interventions designed to provide coping support to parents of hospitalized children and conduct a meta-analysis of coping support intervention outcomes (parent anxiety, depression, and stress). DATA SOURCES: We searched Pubmed, Embase, PsycINFO, Psychiatry Online, and Cumulative Index to Nursing and Allied Health Literature from 1985 to 2016 for English-language articles including the concepts “pediatric,” “hospitalization,” “parents,” and “coping support intervention.” STUDY SELECTION: Two authors reviewed titles and abstracts to identify studies meeting inclusion criteria and reviewed full text if a determination was not possible using the title and abstract. References of studies meeting inclusion criteria were reviewed to identify additional articles for inclusion. DATA EXTRACTION: Two authors abstracted data and assessed risk of bias by using a structured instrument. RESULTS: Initial searches yielded 3450 abstracts for possible inclusion. Thirty-two studies met criteria for inclusion in the systematic review and 12 studies met criteria for inclusion in the meta-analysis. The most commonly measured outcomes were parent depression, anxiety, and stress symptoms. In meta-analysis, combined intervention effects significantly reduced parent anxiety and stress but not depression. Heterogeneity among included studies was high. LIMITATIONS: Most included studies were conducted at single centers with small sample sizes. CONCLUSIONS: Coping support interventions can alleviate parents’ psychological distress during children’s hospitalization. More evidence is needed to determine if such interventions benefit children.

Point Prevalence Study of Pediatric Inpatients Who Are Unable to Communicate Effectively About Pain

OBJECTIVE Pediatric inpatients may be at risk for inadequate pain management if they are unable to communicate effectively because of age, physical or cognitive impairment, or medical procedures. We conducted a point prevalence study to estimate the proportion of inpatients at a childrens hospital who have difficulty communicating to hospital staff. METHODS We obtained nurse reports of ability to communicate for all inpatients aged ≥12 months in a pediatric hospital. Demographic information was obtained from the medical record. RESULTS Questionnaires were completed for 254 inpatients. Forty percent of inpatients had some difficulty communicating, and 69% had experienced pain during the hospitalization. Patient ability to communicate was not related to experiencing pain (χ(2) test, P = .30) or effectiveness of pain management (χ(2) test, P = .80) but was associated with difficulty communicating about pain and nurses needing help from the caretaker to communicate with the patient (χ(2) tests, Ps < .001). CONCLUSIONS A substantial proportion of inpatients aged ≥12 months at a large childrens hospital had difficulties communicating effectively and experienced pain during hospitalization. These communication difficulties were not associated with nurse reports of the effectiveness of pain management. However, patients who had difficulties communicating in general were also more likely to have difficulty communicating about pain specifically, and nurses were more likely to need help from the caregiver to understand these patients. Future directions include identifying which conditions, procedures, and medications are associated with inability to communicate.

Pediatric Oncology Providers' Perceptions of a Palliative Care Service: The Influence of Emotional Esteem and Emotional Labor

CONTEXT Pediatric palliative care consults for children with cancer often occur late in the course of disease and close to death, when earlier involvement would reduce suffering. The perceptions that pediatric oncology providers hold about the pediatric palliative care service (PPCS) may shape referral patterns. OBJECTIVES To explore how pediatric oncology providers at one institution perceived the hospitals PPCS and the way these perceptions may influence the timing of consultation. METHODS We conducted semistructured qualitative interviews with pediatric oncology providers at a large childrens hospital. Interviews were audio-recorded, transcribed, and analyzed by two coders using a modified grounded theory approach. RESULTS We interviewed 16 providers (10 physicians, one nurse practitioner, two social workers, two psychologists, and one child life specialist). Three core perceptions emerged: 1) the PPCS offers a diverse range of valuable contributions to the care of children with advancing cancer; 2) providers held favorable opinions about the PPCS owing to positive interactions with individual palliative care specialists deemed extraordinarily emotionally skilled; and 3) there is considerable emotional labor involved in calling a PPCS consult that serves as a barrier to early initiation. CONCLUSION The pediatric oncology providers in our study held a highly favorable opinion about their institutions PPCS and agreed that early consultation is ideal. However, they also described that formally consulting PPCS is extremely difficult because of what the PPCS symbolizes to families and the emotional labor that the provider must manage in introducing them. Interventions to encourage the early initiation of palliative care in this population may benefit from a focus on the emotional experiences of providers.

The codesign of an interdisciplinary team-based intervention regarding initiating palliative care in pediatric oncology

PurposeChildren with advanced cancer are often not referred to palliative or hospice care before they die or are only referred close to the child’s death. The goals of the current project were to learn about pediatric oncology team members’ perspectives on palliative care, to collaborate with team members to modify and tailor three separate interdisciplinary team-based interventions regarding initiating palliative care, and to assess the feasibility of this collaborative approach.MethodsWe used a modified version of experience-based codesign (EBCD) involving members of the pediatric palliative care team and three interdisciplinary pediatric oncology teams (Bone Marrow Transplant, Neuro-Oncology, and Solid Tumor) to review and tailor materials for three team-based interventions. Eleven pediatric oncology team members participated in four codesign sessions to discuss their experiences with initiating palliative care and to review the proposed intervention including patient case studies, techniques for managing uncertainty and negative emotions, role ambiguity, system-level barriers, and team communication and collaboration.ResultsThe codesign process showed that the participants were strong supporters of palliative care, members of different teams had preferences for different materials that would be appropriate for their teams, and that while participants reported frustration with timing of palliative care, they had difficulty suggesting how to change current practices.ConclusionsThe current project demonstrated the feasibility of collaborating with pediatric oncology clinicians to develop interventions about introducing palliative care. The procedures and results of this project will be posted online so that other institutions can use them as a model for developing similar interventions appropriate for their needs.

Changes in Parental Hopes for Seriously Ill Children

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. BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Hopes for the research agenda about hope

Hope among parents and patients with cancer or other serious illness is important—and too oftenmisunderstood. Although parents and clinicians often report that hope is an important resource in coping with pediatric illness,1 we know little about what parents specifically hope for, what factors influence hopefulness, and what consequences ensue from hopeful thinking. In this issue of Pediatric Blood&Cancer, Sisk et al.2 present data from a prospective, longitudinal study of parental hope among parents of pediatric oncology patients after initial diagnosis and during the first year of treatment. Parents reported on their general sense of hopefulness and what aspects of hope were most important to them at baseline, 4, and 12 months. Results of their study showed that the majority of patients were very hopeful at baseline regardless of the childs prognosis, and the hopefulness of parents who completed the followup visits did not change significantly. Parents gave higher ratings of importance to the four child related sources of hope (cure for child, child feels loved,will always do everything I can for child, and best quality of life for child). Parents of children with poor prognosis showed slightly lower importance rankings for cure at baseline and 4 months. The authors conclude that among parents of children diagnosed with cancer, hope is based on multiple sources, with hope for a cure being only one aspect of hope. The results of this study confirm that, even in the context of pediatric cancer, parent hopes aremore thana single, isolatedhope focused exclusively on cure. This finding is consistent with previous research showing that hope does not go away among parents of children with a life-threatening illness even when parents understand that cure is unlikely.3 These findings are also consistent with prior findings that hope is not simply a form of denial, but rather is a form of active coping among parents.4 How can the field of hope research in the realm of pediatric oncology (as well as other areas of serious, life-threatening pediatric illness) build on these findings and pursue an increasingly enlightening and empowering research agenda? Let us suggest three ways. First, if we are to examine the determinants and consequences of parental hope, we must clearly define what we mean by hope. We should distinguish conceptually between hope as a general feeling of optimism,5 a set of discrete currently held hopes, a specific expectation aboutwhatwill happen in the future, andhopeful patterns of thinking.6 Researchers have developed multiple ways to measure hope, including open ended questions7 and close ended questions.8 Sisk et al. used a single item, “How hopeful would you say you feel in general?”, with response categories ranging from “extremely” to “not at all,” and then presented parents with a list of specific hopes and asked “How important are each of the following in determining your overall sense of hope?”. The authors based their approach on past research and pilot testing with this population. Using a single item to directly ask how hopeful parents felt, however, creates ambiguity about what parents meanwhen they say they are hopeful. Second, to understand the dynamic interactions of hope over time, we should examine in longitudinal cohort studies how these distinct aspects of hope influence how patients and parents cope with adversity (the cancer, toxicities from the treatment of the cancer, disruption of their lives, relapse, and negative effects on other children), or modify the impact of adversity on their mental wellbeing and overall quality of life. Previous studies have shown that parent hopes change over time as the childs situation changes.9 Wehave little empirical evidence, however, about how parent and patient hopefulness predicts coping strategies, mental wellbeing, quality of life, and other outcomes over time. Also unclear is whether hopes and potential effects of hopes vary according to the kind of illness (for example, a treatable illness such as some kinds of cancer or an untreatable genetic disorder) or the childs age at diagnosis (for example, a newborn who has always been seriously ill vs. a child who becomes sick later in life). Third, to empower our ability to work more effectively with hope, we should examine via clinical trials what interventions can work to improve parental hope and the outcomes that rely, to some degree, on hope. Some researchers have conducted interventions with adult patients and caretakers of adults.10 Other researchers have conducted interventions with childrenwith cancer and diabetes and their parents to improve patient and parent resilience.11 Morework is needed in this area. Other potential interventions include helping clinicians become more comfortable discussing hopes with parents and patients even if the most desired hope (a full recovery) is unlikely. Many clinicians find it difficult to talk about hope, especially in difficult situations with high

Association of dairy intake with weight change in adolescents undergoing obesity treatment

Background The role of dairy products in obesity treatment for adolescents is unclear. The study purpose was to assess the association between dairy intake and changes in BMI z-score (zBMI) during adolescent obesity treatment. Methods Observational study nested within a randomized control trial. Linear mixed-effects regression models were adjusted for important non-lifestyle factors then further adjusted for dietary and physical activity variables. In total, 91 adolescents were studied. Results Each serving of total dairy (β = -0.0054, P < 0.01), unflavored milk (β = -0.012, P < 0.01), reduced fat (β = -0.0078, P < 0.05), and low fat/fat-free products (β = -0.0149, P < 0.01) was associated with a decrease in zBMI over 12 months. These associations were no longer significant after adjustment for other dietary and physical activity factors. Sugar-sweetened beverage intake was inversely associated with intake of total dairy (β = -0.186, P = 0.001), unflavored milk (β = -0.115, P = 0.003) and low fat/fat-free dairy (β = -0.125, P = 0.001). Conclusions Intakes of total dairy, unflavored milk, reduced fat dairy and low fat/fat-free dairy products are associated with improved obesity treatment outcomes among adolescents. This could be due to co-occurring healthy lifestyle behaviors or to replacement of other food and beverages associated with obesity, such as sugar-sweetened beverages, by dairy products.