From "surviving to thriving": Mood Lifters - a wellness program for parents of medically complex children.

OBJECTIVES: Parents of medically complex children juggle unique demands associated with caring for chronically ill children, many of which negatively impact their mental wellbeing. Despite this, parents of medically complex children often forgo mental health support due to concerns with costs, time, stigma, and accessibility. There is limited research on evidence-based interventions addressing such barriers for these caregivers. We piloted an adapted version of Mood Lifters, a peer-led wellness program, to equip parents of medically complex children with evidence-based strategies to manage their mental health while also reducing barriers to support. We hypothesized parents would find Mood Lifters to be feasible and acceptable. Further, parents would experience improvements in mental wellbeing upon program completion. METHODS: We conducted a single-arm prospective pilot study to assess Mood Lifters for parents of medically complex children. Participants included 51 parents in the U.S. recruited from a local pediatric hospital providing care for their children. Caregiver mental wellbeing was assessed through validated questionnaires pre-intervention (T1) and post-intervention (T2). Repeated-measures analysis of variance was conducted to evaluate change between T1 and T2. RESULTS: Analyses from T1 and T2 (n = 18) revealed improvements in parents' depression (F(1,17) = 7.691, p = 0.013) and anxiety (F(1,17) = 6.431, p = 0.021) after program completion. Improvements in perceived stress and positive and negative emotion were significant at p < 0.0083. SIGNIFICANCE OF RESULTS: Parents of medically complex children experienced improved mental health upon participating in Mood Lifters. Results offer preliminary support for the feasibility and acceptability of Mood Lifters as an evidence-based care option that may also alleviate common barriers to care.

Adapting user-centered design principles to improve communication of peer parent narratives on pediatric tracheostomy.

BACKGROUND: Parents who have to make tracheostomy decisions for their critically ill child may face forecasting errors and wish to learn from peer parents. We sought to develop an intervention with peer parent narratives to help parents anticipate and prepare for future challenges before making a decision. METHODS: To ensure that the intervention reflects parents' needs (rather than experts' opinions), we adapted a user-centered design (UCD) process to identify decision-critical information and refine the presentation format by interviewing parents who had tracheostomy decision making experience. Phase 1 (n = 10) presented 15 possible forecasting errors and asked participants to prioritize and justify the problematic ones. It also asked participants to comment on the draft narratives and preferred delivery mode and time of the intervention. Phase 2 (n = 9 additional parents and 1 previous parent) iteratively collected feedback over four waves of user interviews to guide revisions to the informational booklet. RESULTS: Phase 1 revealed that parents wanted information to address all forecasting errors as soon as tracheostomy becomes an option. They also highlighted diverse family situations and the importance of offering management strategies. The resulting prototype booklet contained five sections: introduction, child's quality of life, home care, practical challenges, and resources. Feedback from Phase 2 focused on emphasizing individualized situations, personal choice, seriousness of the decision, and caregiver health as well as presenting concrete illustrations of future challenges with acknowledgement of positive outcomes and advice. We also learned that parents preferred to use the booklet with support from the care team rather than read it alone. CONCLUSIONS: A UCD process enabled inclusion of parental perspectives that were initially overlooked and tailoring of the intervention to meet parental expectations. Similar UCD-based approaches may be valuable in the design of other types of patient communications (e.g., decision aids).

A Narrative Review of Pediatric Respite Care Initiatives in the United States.

Families of children receiving palliative care depict lack of respite services as a top unmet need. Although the benefits of access to respite services are notable, little is known on a state-by-state basis about respite provision or funding. The study objective was to conduct a national evaluation of pediatric respite care programs to identify and describe how states provide and fund respite care for children. The study approach adhered to the Scale for the Assessment of Narrative Review Articles quality standards using multiple data sources including engagement with the existing literature, content analyses of public-facing websites, and conversations with 40 stakeholders from 15 states. States offered respite services in a variety of ways: Medicaid waivers used to fund respite care, state-funded programs that provide respite, and philanthropy-based respite facilities. This narrative review revealed the creativity involved in different settings to improve respite access, staffing, and reimbursement. Suggestions to address the unmet respite needs of families included establishing a respite home, improving Medicaid reimbursement, expanding Medicaid waiver eligibility, providing a respite benefit through Medicaid, implementing nursing workforce initiatives, and centralizing staffing databases.

A "Good Death" for Children with Cardiac Disease.

Children with heart disease often experience symptoms and medically intense end-of-life care. Our study explored bereaved parents' perceptions of a "good death" via a mail survey to 128 parents of children with heart disease who died in two centers. Parental perceptions of end-of-life circumstances were assessed by closed-ended questions including level of agreement with the question: "would you say your child experienced a good death?" and open-ended comments were contributed. Medical therapies at end-of-life and mode of death were retrieved through chart review. Of 50 responding parents, 44 (response rate: 34%) responded to the "good death" question; 16 (36%) agreed strongly, 15 (34%) agreed somewhat, and 30% disagreed (somewhat: 7, 16%; strongly: 6, 14%). Half the children were on mechanical support and 84% intubated at death. Of children with cardiopulmonary resuscitation (CPR) at end-of-life, 71% of parents disagreed with the "good death" question compared with 22% of parents whose child died following discontinuation of life-sustaining therapy or comfort measures (OR 9.1, 95% CI 1.3, 48.9, p < 0.01). Parent-reported circumstances associated with disagreement with the "good death" question included cure-oriented goals-of-care (OR 16.6, 95% CI 3.0, 87.8, p < 0.001), lack of advance care planning (ACP) (OR 12.4 95% CI 2.1, 65.3 p < 0.002), surprise regarding timing of death (OR 11.7, 95% CI 2.6, 53.4 p < 0.002), and experience of pain (OR 42.1, 95% CI 2.3, 773.7 p < 0.02). Despite high medical intensity, many bereaved parents of children with cardiac disease agree a "good death" was experienced. A "good death" was associated with greater preparedness, ACP, non-cure-oriented goals-of-care, pain control, and CPR avoidance.

Palliative care is not associated with decreased intensity of care: Results of a chart review from a large children's hospital.

BACKGROUND: Palliative care is an important component of pediatric oncology care, especially for children who will not be cured of their disease. However, barriers remain to integration of this service. One barrier is the perception that it indicates "giving up." This study examined if palliative care involvement was associated with a decreased intensity of care at the end of life for children with malignancy at a large academic center with a well-established palliative care program. PROCEDURE: This is a retrospective chart review that measured intensity of care as the number of emergency department visits, hospital days, and intensive care unit days in the last one and three months of life. The data were compared for patients with and without palliative care involvement and with and without hospice involvement. RESULTS: Palliative involvement was not associated with a decrease in the intensity of care in the last three months of life. Hospice care was associated with a decreased intensity of care. These results held true in analyses adjusted for age at death, gender, and type of malignancy. CONCLUSIONS: These data can reassure patients, families, and providers that palliative involvement does not necessitate decreased intensity of care. Patients and families often choose hospice care to decrease the amount of time spent at the hospital and it was associated with meeting that goal.

Using Narratives to Correct Forecasting Errors in Pediatric Tracheostomy Decision Making.

PURPOSE: Parents who face goals-of-care tracheostomy decisions may lack an understanding of challenges affecting their child's and family's long-term quality of life (QOL) to accurately forecast possible outcomes for decision making. We sought to examine whether and how parents' narratives of the child's and family's long-term QOL influence parental tracheostomy decisions and forecasting. METHOD: We recruited US adult Amazon Mechanical Turk participants (N = 1966) who self-reported having a child (<6 y old) or planning a pregnancy within 5 y. Participants read a vignette about making a tracheostomy decision for their hypothetical neurologically impaired baby. They were randomized to 1 of the following 4 conditions: 1) Baby QOL narratives, 2) Family QOL narratives, 3) Baby QOL + Family QOL narratives, and 4) control: no narratives. They then made a decision about whether or not to pursue tracheostomy, forecasted their concerns about the baby's and family's QOL, reported their values and social norm beliefs about tracheostomy, comfort care, and parental medical decision making, and completed individual differences scales and demographics. RESULTS: Controlling for individual characteristics, participants in the Baby QOL and Baby QOL + Family QOL conditions were less likely to choose tracheostomy as compared with the control (odds ratio [OR] = 0.38 and 0.25, respectively, P < 0.001). Fewer participants in the Family QOL condition chose tracheostomy compared with the control, but this difference was not statistically significant (OR = 0.70, P = 0.11). Moreover, narratives increased pessimistic forecasting, which was associated with less interest in tracheostomy. CONCLUSION: Narratives clarifying long-term implications of pursuing tracheostomy have the potential to influence forecasting and decisions. Narrative-based interventions may be valuable in other situations in which forecasting errors are common.

Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents.

BACKGROUND: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect on their child's end-of-life care to identify which components of decision-making, supportive services, and communication were helpful, not helpful, or lacking. METHODS: An anonymous survey about end-of-life experiences was sent to families of children treated at a single institution who died of a malignancy between 2010 and 2017. RESULTS: Twenty-eight surveys were returned for a 30.8% response rate. Most of the bereaved parents (61%) reported a desire for shared decision-making; this was described by 52% of families at the end of their child's life. There was a statistically significant association between how well death went and whether the parental perception of actual decision-making aligned with desired decision-making (P = .002). Families did not utilize many of the supportive services that are available including psychology and psychiatry (only 22% used). Respondents felt that additional services would have been helpful. CONCLUSIONS: Health care providers should strive to participate in decision-making models that align with the preferences of the patient and family and provide excellent communication. Additional resources to support families following the death of a child should be identified for families or developed and funded if a gap in available services is identified.

Experiences at the End of Life From the Perspective of Bereaved Parents: Results of a Qualitative Focus Group Study.

BACKGROUND: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by families receiving end-of-life care. We report the most helpful aspects of care provided during the end of life and identify opportunities to improve care delivery during this critical time. METHODS: This study consists of 2 one-hour focus group sessions with 6 participants each facilitated by a clinical psychologist to explore the experiences of bereaved parents of pediatric oncology patients at the end of their child's life. The data were transcribed and coded using constant comparative analysis and evaluated for inter-rater reliability using intraclass correlation coefficient. RESULTS: Four common themes were identified through qualitative analysis: (1) valued communication qualities, (2) valued provider qualities, (3) unmet needs, and (4) parental experiences. The most prevalent of these themes was unmet needs (mentioned 51 times). Subthemes were identified and evaluated. Parents described struggling with communication from providers, loss of control in the hospital environment, and challenges associated with transition of care to hospice services. CONCLUSION: Interventions that support the complex needs of a family during end-of-life care are needed, especially with regard to coordination of care.

Thematic Analysis of Interprofessional Provider Perceptions of Pediatric Death.

PURPOSE: Though provider and patient perceptions of death are characterized in the adult population literature, there is limited information related to providers' perceptions in pediatric and neonatal patients. The purpose of this study was to better understand how interprofessional care team members perceive and experience neonatal and pediatric end-of-life situations. DESIGN AND METHODS: This survey questionnaire was administered to interprofessional providers following their participation in an institutional workshop, as part of an ongoing institutional effort to improve end-of-life experiences for patients/family and providers. Interprofessional care providers completed an electronic survey consisting of closed-ended and one open-ended question to elicit their perceptions of their participation in end of life care for a recent neonatal/pediatric patient in the period before the child's death. RESULTS: The qualitative analysis of 306 free-text responses commenting on the deaths of 138 patients, contained within 880 completed mixed-method surveys, is described. Thematic analysis of the free text discovered three primary themes from the data: favorable aspects of the death experience, unfavorable aspects of the experience, and combined favorable and unfavorable aspects. Four subthemes contributed to the themes; namely, language, parental presence, trust/rapport in provider relationships and inclusion in decision-making, communication, and culture. CONCLUSIONS: Multiple factors contribute to how interprofessional care providers perceive end-of-life care experiences for neonatal/pediatric patients. The same death may be perceived differently by different providers. PRACTICE IMPLICATIONS: Understanding favorable and unfavorable aspects of providing end-of-life care will support strategies to provide resources, education and support to facilitate coping and resiliency in care providers.

Developing competencies for pediatric hospice and palliative medicine.

In 2006, hospice and palliative medicine (HPM) became an officially recognized subspecialty. This designation helped initiate the Accreditation Council of Graduate Medical Education Outcomes Project in HPM. As part of this process, a group of expert clinician-educators in HPM defined the initial competency-based outcomes for HPM fellows (General HPM Competencies). Concurrently, these experts recognized and acknowledged that additional expertise in pediatric HPM would ensure that the competencies for pediatric HPM were optimally represented. To fill this gap, a group of pediatric HPM experts used a product development method to define specific Pediatric HPM Competencies. This article describes the development process. With the ongoing evolution of HPM, these competencies will evolve. As part of the Next Accreditation System, the Accreditation Council of Graduate Medical Education uses milestones as a framework to better define competency-based, measurable outcomes for trainees. Currently, there are no milestones specific to HPM, although the field is designing curricular milestones with multispecialty involvement, including pediatrics. These competencies are the conceptual framework for the pediatric content in the HPM milestones. They are specific to the pediatric HPM subspecialist and should be integrated into the training of pediatric HPM subspecialists. They will serve a foundational role in HPM and should inform a wide range of emerging innovations, including the next evolution of HPM Competencies, development of HPM curricular milestones, and training of adult HPM and other pediatric subspecialists. They may also inform pediatric HPM outcome measures, as well as standards of practice and performance for pediatric HPM interdisciplinary teams.

Parental perspectives on suffering and quality of life at end-of-life in children with advanced heart disease: an exploratory study*.

OBJECTIVE: To describe parent perspectives regarding the end-of-life experience of children with advanced heart disease. DESIGN: Cross-sectional multicenter survey study of bereaved parents. SETTING: Two tertiary care pediatric hospitals. SUBJECTS: Parents of children younger than 21 years with primary cardiac diagnoses who died in the hospital 9 months to 4 years before the survey date. Parents were excluded if they were non-English speakers or had previously denied permission to contact. INTERVENTION: The Survey for Caring for Children with Advanced Heart Disease was developed, piloted, and then sent to parents of all children who died at two sites. MEASUREMENTS AND MAIN RESULTS: Fifty bereaved parents responded (39% response rate) a mean of 2.7 years after their child's death. Median age at death was 6 months (3.6 d to 20.4 yr). At end-of-life, 86% of children were intubated and 46% were receiving mechanical circulatory support. Seventy-eight percent died during withdrawal of life-sustaining interventions and 16% during resuscitative efforts. Parents realized that their child had no realistic chance of survival a median of 2 days prior to death (0-30 d). According to parents, 47% of children suffered "a great deal," "a lot," or "somewhat" during the end-of-life period. The symptoms parents perceived to be causing the most suffering were breathing and feeding difficulties in children under 2 years and fatigue and sleeping difficulties in older children. Seventy-one percent of parents described the quality of life of their child during the last month of life as "poor" or "fair." Most parents (84%) described the quality of care delivered as "very good" or "excellent." CONCLUSIONS: According to their parents, many children with advanced heart disease experience suffering in the end-of-life care period. For most, realization that their child has no realistic chance of survival does not occur until late, some not until death is imminent. Once this realization occurs, however, parents perceive peacefulness, a "good death," and excellent quality of care. Strategies for improved communication around symptom management, quality of life, prognosis, and advance care planning are needed for families of children with advanced heart disease.

Predictors of depressive symptoms in parents of chronically ill children admitted to the pediatric intensive care unit.

OBJECTIVE: To identify factors in the pediatric intensive care unit (PICU) patient population that may result in increased risk of depressive symptoms in their parents. DESIGN: Six-month, prospective, observational study in a tertiary-level PICU on parents of chronically ill children admitted to PICU. Parents were assessed by background questionnaire and standardized depression scale. RESULTS: Data was compared to various markers such as child's diagnosis, admission reason, palliative care diagnosis type (ACT code), and course/length of disease. Incidence of depressive symptoms in parents was inversely correlated with duration of child's chronic illness. Parents of children admitted for planned postoperative management were more likely to report depressive symptoms compared to parents of children admitted for acute changes in health. CONCLUSION: Parents of certain chronically ill children may benefit from routine screening for depression.

Why and how a Department of Obstetrics and Gynecology stopped doing routine newborn male circumcision.

In 2004, the Department of Obstetrics and Gynecology at the University of Michigan decided to stop offering routine circumcision for specialty and disciplinary, logistic, and educational reasons. The Pediatric Hospitalist Service assumed responsibility for the procedures and the educational process with resultant patient and staff satisfaction, educational, logistical and economic benefits.

Inattention, hyperactivity, and symptoms of sleep-disordered breathing.

OBJECTIVE: Inattention and hyperactivity are frequent among children with sleep-disordered breathing (SDB) and often improve when SDB is treated. However, the frequency of SDB symptoms among inattentive and hyperactive children has received little study. DESIGN: Cross-sectional survey. SETTING: Two university-affiliated but community-based general pediatrics clinics. PATIENTS: Patients consisted of N = 866 children (469 boys), aged 2.0 to 13.9 years (mean: 6.8 plus minus 3.2 years), with clinic appointments. MEASURES: A validated Pediatric Sleep Questionnaire assessed for habitual snoring (1 item), snoring severity (a 4-item subscale), sleepiness (4 items), and overall risk of SDB (16 items). Parents also completed 2 common behavioral measures, an inattention/hyperactivity scale (IHS) derived from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, and the hyperactivity index (HI, expressed as a t score) of the Conners' Parent Rating Scale. RESULTS: Habitual snoring was reported in 16% (95% confidence interval [CI]: 13, 19) of the participants. High HI scores (>60) were found in 13% (95% CI: 11, 16) of all participants, 22% (95% CI: 15, 29) of habitual snorers, and 12% (95% CI: 9, 14) of nonsnorers. Odds ratios between HI >60 and each of the following were: habitual snoring, 2.2 (95% CI: 1.4, 3.6); 1 additional positive symptom-item on the snoring scale, 1.3 (95% CI: 1.1, 1.5); 1 additional positive item on the sleepiness scale, 1.6 (95% CI: 1.4, 2.0); and a 1-standard deviation increase in the overall SDB score, 1.7 (95% CI: 1.4, 2.0; all odds ratios age- and sex-adjusted). Results were similar for high IHS scores (>1.25). Stratification by age and sex showed that most of the association with snoring (but not sleepiness) derived from boys <8 years old. CONCLUSIONS: Inattention and hyperactivity among general pediatric patients are associated with increased daytime sleepiness and---especially in young boys---snoring and other symptoms of SDB. If sleepiness and SDB do influence daytime behavior, the current results suggest a major public health impact.

Associations between symptoms of inattention, hyperactivity, restless legs, and periodic leg movements.

STUDY OBJECTIVES: Attention-deficit/hyperactivity disorder (ADHD) has shown associations with restless legs syndrome (RLS) and periodic leg movements during sleep (PLMS) among small samples of referred children, but whether RLS or PLMS are common more generally among hyperactive children has not been well studied. DESIGN: Cross-sectional survey. SETTING: Two university-affiliated but community-based general pediatrics clinics. PATIENTS: N=866 children (469 boys), aged 2.0 to 13.9 years (mean 6.8+/-3.2 years), with clinic appointments. INTERVENTIONS: N/A. MEASUREMENTS: A validated Pediatric Sleep Questionnaire assessed for PLMS (a 6-item subscale), restless legs, growing pains, and several potential confounds of an association between behavior and PLMS or RLS. Parents also completed two common behavioral measures, a DSM-IV-derived inattention/hyperactivity scale (IHS) and the hyperactivity index (HI, expressed as a t-score) of the Conners' Parent Rating Scale. RESULTS: Restless legs were reported in 17% (95% C.I. [15, 20]) of the subjects. Positive HI scores (>60) were found in 13% [11, 16] of all subjects, 18% [12, 25] of children with restless legs, and 11% [9, 14] of children without restless legs (chi-square p<0.05). Odds ratios between HI>60 and each of the following were: a one-s.d. increase in the overall PLMS score, 1.6 [1.4, 1.9]; restless legs, 1.9 [1.1, 3.2]; and growing pains, 1.9 [0.9, 3.6] (all age and sex-adjusted). Results were similar for high IHS scores (>1.25). The associations between each behavioral measure and the PLMS score retained significance after statistical adjustment for sleepiness, snoring, restless sleep in general, or stimulant use. CONCLUSIONS: Inattention and hyperactivity among general pediatric patients are associated with symptoms of PLMS and RLS. If either condition contributes to hyperactivity, the magnitude of association suggests an important public health problem.

Symptoms of sleep disturbances among children at two general pediatric clinics.

OBJECTIVE: We assessed the frequency of childhood sleep problems at 2 general pediatric clinics. STUDY DESIGN: Parents of 1038 unselected children (554 boys) aged 2.0 to 13.9 years completed a validated Pediatric Sleep Questionnaire while waiting for appointments. RESULTS: Habitual snoring was reported in 176 (17%) of the children. Criterion scores suggestive of sleep-disordered breathing were found in 115 (11%) of the children, in 29% of children at the clinic for neurologic indications, and in 21% of children at the clinic for noninfectious respiratory indications. Insomnia (ie, unrefreshing sleep or difficulty with sleep onset, sleep maintenance, or early morning awakening from sleep) was reported in 430 (41%) of the children; > or =2 symptoms were present in 191 (18%) of the children. Excessive daytime sleepiness was suggested in 148 (14%) of the children, and 390 (38%) had symptoms of sleep terrors, sleepwalking, or nocturnal bruxism. CONCLUSIONS: Sleep problems such as sleep-disordered breathing, insomnia, excessive sleepiness, and parasomnias are frequent among children seen at general pediatric practices.