Family Conference Research Articles

Barth Syndrome Foundation: From humble beginnings to becoming an integral partner.

Barth Syndrome Foundation: From humble beginnings to becoming an integral partner.

Integrating Palliative Care Into a Neurosurgical Intensive Care Unit (NS-ICU): A Quality Improvement (QI) Project.

We conducted a pilot quality improvement (QI) project with the aim of improving accessibility of palliative care to critically ill neurosurgical patients. The QI project was conducted in the neurosurgical intensive care unit (NS-ICU). Prior to the QI project, referral rates to palliative care were low. The ICU-Palliative Care collaborative comprising of the palliative and intensive care team led the QI project from 2013 to 2015. The interventions included engaging key stake-holders, establishing formal screening and referral criteria, standardizing workflows and having combined meetings with interdisciplinary teams in ICU to discuss patients' care plans. The Palliative care team would review patients for symptom optimization, attend joint family conferences with the ICU team and support patients and families post-ICU care. We also collected data in the post-QI period from 2016 to 2018 to review the sustainability of the interventions. Interventions from our QI project and the ICU-Palliative Care collaborative resulted in a significant increase in the number of referrals from 9 in 2012 to 44 in 2014 and 47 the year later. The collaboration was beneficial in facilitating transfers out of ICU with more deaths outside ICU on comfort-directed care (96%) than patients not referred (75.7%, p < 0.05). Significantly more patients had a Do-Not-Resuscitation (DNR) order upon transfer out of ICU (89.7%) compared to patients not referred (74.2.%, p < 0.001), and had fewer investigations in the last 48 hours of life (p < 0.001). Per-day ICU cost was decreased for referred patients (p < 0.05). Multi-faceted QI interventions increased referral rates to palliative care. Referred patients had fewer investigations at the end-of-life and per-day ICU costs.

Sustained effects of the INFORM cluster randomized trial: an observational post-intervention study

BackgroundNumerous studies have examined the efficacy and effectiveness of health services interventions. However, much less research is available on the sustainability of study outcomes. The purpose of this study was to assess the lasting benefits of INFORM (Improving Nursing Home Care Through Feedback On perfoRMance data) and associated factors 2.5 years after removal of study supports. INFORM was a complex, theory-based, three-arm, parallel cluster-randomized trial. In 2015–2016, we successfully implemented two theory-based feedback strategies (compared to a simple feedback approach) to increase nursing home (NH) care aides’ involvement in formal communications about resident care.MethodsSustainability analyses included 51 Western Canadian NHs that had been randomly allocated to a simple and two assisted feedback interventions in INFORM. We measured care aide involvement in formal interactions (e.g., resident rounds, family conferences) and other study outcomes at baseline (T1, 09/2014-05/2015), post-intervention (T2, 01/2017-12/2017), and long-term follow-up (T3, 06/2019–03/2020). Using repeated measures, hierarchical mixed models, adjusted for care aide, care unit, and facility variables, we assess sustainability and associated factors: organizational context (leadership, culture, evaluation) and fidelity of the original INFORM intervention.ResultsWe analyzed data from 18 NHs (46 units, 529 care aides) in simple feedback, 19 NHs (60 units, 731 care aides) in basic assisted feedback, and 14 homes (41 units, 537 care aides) in enhanced assisted feedback. T2 (post-intervention) scores remained stable at T3 in the two enhanced feedback arms, indicating sustainability. In the simple feedback group, where scores were had remained lower than in the enhanced groups during the intervention, T3 scores rose to the level of the two enhanced feedback groups. Better culture (β = 0.099, 95% confidence interval [CI] 0.005; 0.192), evaluation (β = 0.273, 95% CI 0.196; 0.351), and fidelity enactment (β = 0.290, 95% CI 0.196; 0.384) increased care aide involvement in formal interactions at T3.ConclusionsTheory-informed feedback provides long-lasting improvement in care aides’ involvement in formal communications about resident care. Greater intervention intensity neither implies greater effectiveness nor sustainability. Modifiable context elements and fidelity enactment during the intervention period may facilitate sustained improvement, warranting further study—as does possible post-intervention spread of our intervention to simple feedback homes.

Support for and involvement of family caregivers in Comprehensive Cancer Center - an Assessment of the Palliative Care Working Group within the network of Comprehensive Cancer Center funded by the German Cancer Aid

ZusammenfassungEinleitung Eine leitliniengerechte onkologische Versorgung umfasst nicht nur die frühzeitige palliativmedizinische Mitbetreuung unheilbar erkrankter Patienten, sondern auch die Mitbetreuung ihrer Angehörigen. Untersuchungen zur Umsetzung im klinischen Alltag in Deutschland fehlen. Methoden Die AG Palliativmedizin im Netzwerk der von der Deutschen Krebshilfe geförderten Onkologischen Spitzenzentren (CCC) führte mit einem selbstgestalteten Fragebogen eine systematische Erfassung aller Angebote in den CCC/in der spezialisierten Palliativversorgung (SPV) im CCC/lokal außerhalb des CCC an allen Standorten durch. Ergebnisse Gut etabliert in den 17 CCC/in der SPV sind die psychoonkologische (100 %/94 %), sozialrechtliche (94 %/100 %) und seelsorgerische Beratung der Angehörigen (je 94 %) sowie Angebote für Kinder erkrankter Eltern (88 %/100 %) und Informationsmaterialien (je 88 %). Häufiger als im restlichen CCC werden in der SPV pflegerische Schulungen (77 %/94 %) und Familienkonferenzen (59 %/88 %) durchgeführt. SOPs sind mit 23 %/18 % selten etabliert, ebenso wie Screenings der Angehörigenbedürfnisse (0/24 %). Trauer- und Selbsthilfegruppen sind mit je 82 % häufiger außerhalb der CCC verfügbar. Die psychoonkologische/sozialrechtliche Beratung und Angebote für Kinder erkrankter Eltern (je 94 %) wurden als am wichtigsten für ein CCC eingeschätzt. Für die SPV waren es zudem die pflegerische Schulung sowie Informationsmaterialien (je 94 %). SOPs wurden mit 47 %/41 % als sehr/extrem wichtig betrachtet, und Screenings der Angehörigenbedürfnisse mit 53 %/65 %. Schlussfolgerung Psychosoziale/seelsorgerische Beratung der Angehörigen sowie Angebote für Kinder erkrankter Eltern sind in den CCC entsprechend ihrer Bedeutung gut etabliert, in der SPV auch pflegerische Schulungen und Familienkonferenzen. SOPs zur Mitbetreuung und Einbeziehung von Angehörigen sowie Screenings der Angehörigenbedürfnisse müssen dringend implementiert werden.

Family involvement in the intensive care unit in four Nordic countries.

Relevance to clinical practice The findings from the study highlighting family involvement, high-quality communication and flexible visiting policy as central aspects of family care may inspire clinicians to identify aspects of everyday family care in their ICUs calling for further improvement. To describe family involvement, communication practices and visiting policies in adult ICUs. A cross-sectional survey. A questionnaire consisting of 11 sections was developed, pilot tested and e-mailed to 196 ICUs. The participants were intensive care nurses in adult ICUs in four Nordic countries. The survey was conducted in October to December 2019. The response rate was 81% (158/196) of the invited ICUs. Most of the units had fewer than 11 beds. Family participation in patient care, including involvement in ward rounds and presence during cardiopulmonary resuscitation, varied between the countries, whereas most families in all countries were involved in decision-making. Family conferences were generally initiated by staff or family members. Children under 18 did not always receive information directly from the staff, and parents were not advised about how to inform their children. Although most respondents described open visiting, restrictions were also mentioned in free-text comments. The level of family care in ICUs in the four Nordic countries is generally based on nurses' discretion. Although most Nordic ICUs report having an open or flexible visiting policy, a wide range of potential restrictions still exists. Children and young relatives are not routinely followed up. Family members are included in communication and decision-making, whereas family involvement in daily care, ward rounds and family-witnessed resuscitation seem to be areas with a potential for improvement.

Putting Prognosis First: Impact of an Intensive Care Unit Team Premeeting Curriculum.

Background: The paradigm of care has shifted in the pediatric intensive care unit (ICU) such that patients are frequently cared for by teams of specialists rather than the ICU attending physician solely managing care. An unintended consequence of care managed by multiple specialists is that families often receive conflicting messages from different team members, with little focus on disclosing prognosis.Objective: To address this gap, we developed and pilot-tested a team communication skills training (CST) program focused on the healthcare team premeeting in which roles, purpose, and prognosis are clarified before meeting with the family. Our aim was to assess whether the team CST program was associated with increased discussion of prognosis during the team premeeting.Methods: We conducted a single-center, observational pilot study to develop and test a team CST program using a before/after design. Pediatric ICU physicians and specialists from pediatric neurology and pediatric oncology who co-led family conferences in the pediatric ICU participated in a 1-day team CST program. Team premeetings were audio-recorded and transcribed.Results: We analyzed seven pre- and 10 post-CST program audio-recorded team premeetings, which each compromised a median of eight healthcare team members. Prognosis was more likely to be discussed in post-CST team premeetings (10/10 vs. 3/7; P = 0.0147). Agreement on prognosis was achieved more frequently in post-CST teams compared with pre-CST teams, although the percentage of agreement did not reach significance (9/10 vs. 3/7; P = 0.1007).Conclusions: A CST program with a structured approach to conducting a team premeeting was associated with an increased discussion of prognosis among team members before convening with the family in the pediatric ICU.

Psychosocial impact of epidermolysis bullosa on patients: A qualitative study.

Epidermolysis bullosa (EB) is an inherited disorder that results in painful skin blisters requiring daily wound care. The psychosocial impact of EB is one of the most significant concerns for patients, but there is minimal research addressing these concerns or ways to improve patient quality of life (QoL). To examine the psychosocial impact of EB on affected patients and ways to improve their QoL. Eight EB participants were selected from the 2006 DEBRA Family Conference Day in Toronto. Participants were interviewed by a social worker and a field evaluator. The transcript of each interview was assessed using qualitative content analysis. Four themes were identified: school interaction, daily life, family interactions, and societal interactions. Participants reported being teased and avoided by peers, and they felt their conditions were misunderstood by the general public. School absenteeism resulted in some patients falling behind in school, which may have been misinterpreted as intellectual impairment. Patients acknowledged significant dependence on others and felt they were contributing to caregiver burden. Our findings highlight the psychosocial impact of EB on patients. As EB awareness and resources to support patients and caregivers have improved since this study was conducted, more studies exploring the current landscape and opportunities to improve quality of life are needed.

Wow, woo, win"- Healthcare students’ and facilitators’ experiences of interprofessional simulation in three-dimensional virtual world: A qualitative evaluation study

BackgroundIn an age disrupted by COVID-19 pandemic, three-dimensional virtual world (3DVW) offers an opportunity for healthcare students from different higher education institutions to participate in interprofessional education. Despite its growing evidence, there is a need to unravel the complex learning process in order to ensure high quality of interprofessional education delivery. AimThis study aimed to explore the experiences of healthcare students and facilitators on the use of 3DVW for interprofessional team-based virtual simulation. MethodsInterprofessional teams, each comprising six different healthcare students (Medicine, Nursing, Pharmacy, Physiotherapy, Occupational Therapy, and Medical Social Work) and two clinicians who acted as facilitators, logged into the 3DVW from their own remote locations to participate in team-based care delivery that included an interprofessional bedside round and a family conference. A qualitative descriptive study was conducted on a purposive sample of 30 healthcare students and 12 facilitators using focus group discussions and individual interviews. ResultsFour themes emerged from their experiences: the “wow experience”, authentic experience on collaborative care, ease of learning, and preeminent role of the facilitator. The simulation provided the “wow” experiences through contextual, collaborative and experiential learning approaches. Despite technical challenges, the participants were wooed by the comforts of learning from home and the psychological safety in virtual environment. The facilitators played a critical role in optimizing learning engagement to win learners over. ConclusionOur study explicates how attention to the “wow, woo and win” trilateral factors can transform the interprofessional learning experiences offered by 3DVW simulation. Future developments in the use of this learning technology should include developing the clinicians' facilitation skills and the provision of technical support to make this 3DVW a success calls in winning students' learning engagement.

Assessment of parent understanding in conferences for critically ill neonates

ObjectivesThis study aimed to characterize the use and impact of assessments of understanding in parent-clinician communication for critically ill infants. MethodsWe enrolled parents and clinicians participating in family conferences for infants with neurologic conditions. Family conferences were audio recorded as they occurred. We used a directed content analysis approach to identify clinician assessments of understanding and parent responses to those assessments. Assessments were classified based on an adapted framework; responses were characterized as “absent,” “yes/no,” or “elaborated.” ResultsFifty conferences involving the care of 25 infants were analyzed; these contained 374 distinct assessments of understanding. Most (n = 209/374, 56%) assessments were partial (i.e. okay?); a minority (n = 60/374, 16%) were open-ended. When clinicians asked open-ended questions, parents elaborated in their answers most of the time (n = 55/60, 92%). Approximately three-quarter of partial assessments yielded no verbal response from parents. No conferences included a teach-back. ConclusionsAlthough common, most clinician assessments of understanding were partial or close-ended and rarely resulted in elaborated responses from parents. Open-ended assessments are an effective, underutilized strategy to increase parent engagement and clinician awareness of information needs. Practice implicationsClinicians hoping to facilitate parent engagement and question-asking should rely on open-ended statements to assess understanding.

Development of the nursing practice scale for end-of-life family conferences in critical care

ObjectivesThis study aimed to develop the Nursing Practice Scale for End-of-life Family conferences in critical care and to clarify the current status of nursing practice regarding family conferences. Research methodology/designWe conducted a cross-sectional, self-administered questionnaire survey with 955 critical care unit nurses in 97 hospitals. Content validity, factor validity and criterion-related validity, known-group validity, internal consistency and test–retest reliability were evaluated. Data were then analysed statistically. SettingAdult intensive care units or high dependency units in Japan. ResultsThree factors with 39 items were extracted through item analysis and confirmatory factor analysis as hypothesised (Factor 1: Preparation, Factor 2: Discussion and Factor 3: Follow-up), and the mean score per item for each factor was 3.57, 3.73 and 3.75, respectively. Nurses who had any certification or had worked in critical care unit for >5 years had a significantly greater score than the others. The Cronbach’s α were 0.86–0.96 and the intraclass correlation coefficients were 0.79–0.87. ConclusionThe Nursing Practice Scale for End-of-life Family conferences in critical care is a valid and reliable scale. This study could effectively facilitate communication among patients, their families and healthcare providers.

Family Conference Simulation Designed for Physician Assistant Students and Chaplain Residents.

Background: Physician Assistants (PAs) are increasingly likely to work in clinical areas where family conference skills are needed, but there is currently a lack of family conference education in PA program curricula. Objectives: To (1) describe a novel interprofessional education (IPE) event for PA students and chaplain residents; (2) examine whether participating in the IPE event is associated with improvements in attitudes and knowledge regarding interprofessional teams; and (3) describe participant perceptions about the event. Design: Two cohorts of PA students and chaplain residents completed a required interprofessional simulation activity involving a critically ill patient and a family conference. All participants completed pre- and postsimulation activity questionnaires. Bivariate tests were utilized to analyze the quantitative data. Setting/Subjects: Over two years, 171 PA students and 20 chaplain residents completed the activity at a school of medicine in the United States. Measurements: Pre- and postactivity measurements included role-specific questions plus overlapping sections regarding roles and responsibilities of the other discipline, comfort facilitating end-of-life discussions, and the value of IPE. Results: For PA students, there was a statistically significant increase for all questionnaire items. The largest effect size increases were in PA students' confidence in provider-patient communication at the end of life (Cohen's d > 1.1). Chaplain data demonstrated increases in knowledge of the PA role and likelihood of consulting with PAs in the future. Conclusion: This simulation event improved participant attitudes and knowledge relating to interprofessional interactions in the setting of an end-of-life family conference, and may contribute to more effective collaboration between PAs and chaplains in the clinical setting.

"You Have Made All the Loving Choices": Good Parent Praise in Pediatric Critical Care Conferences.

Parents' ideas about what it means to be a "good parent" to their seriously ill child influence parental decision-making. Little is known about when, why, and how clinicians offer good-parent praise or how parents react. Our objective was to describe clinicians' spontaneous use of good-parent praise statements to parents during PICU care conferences and how parents respond. Single-center, cross-sectional review of 72 transcripts of audio-recorded PICU care conferences in a quaternary medical center. Qualitative analysis was conducted to code triggers for clinician good-parent statements and parent responses. Clinicians made at least one statement of good-parent praise in 32% of family conferences. Triggers for clinician statements of good-parent praise were categorized into 6 themes: decision making, gratitude to the clinical team, defense of parenting, parental body language, parental guilt, and intention to close the meeting. Parental responses to clinician statements of good-parent praise fell into 6 themes: acknowledgment, medical talk, deepening of feelings expressed in conversation, focusing on a decision, redirecting on the patient, and gratitude. Clinicians spontaneously praised parents for their role in being a good parent in less than one-third of family conferences. Clinician statements were triggered by verbal and nonverbal parental behaviors, a critical decision-making point in the conversation, and an intention to close the meeting. In response, parents frequently responded positively to the praise and often returned the gratitude or reflected on their feelings about caregiving for their child.

Family Conferencing: Responsibility at Grassroots Level – A Comparative Analysis between the Netherlands and South Africa

As family group conferencing is gaining world-wide recognition as an alternative dispute resolution process, this article aims to outline the origin and relevance of this process, which promotes solution-finding to family problems by the family themselves and/or the social network and usually results in a plan or agreement that will be implemented collaboratively by the people involved. Although it was originally used in child protection matters, the process is now used for a wide range of problems pertaining to families and individual family members, including divorce matters, the illness or death of a family member, the care of the elderly, family financial problems, bullying, addiction cases, domestic violence and child justice matters. The process is also suitable for application in problems concerning any group, neighbourhood or school. Next, the application of family group conferencing in both the Netherlands and South Africa is first examined and then briefly compared. It appears that family group conferencing through Eigen Kracht in the Netherlands is an established practice which consists of a relatively simple and quick process and yields positive results for families/communities experiencing problems. Recently the Dutch Youth Act of 2015 (Jeugdwet) made legislative provision inter alia for a family group plan to be drafted by parents, in conjunction with next-of-kin or others who are part of the social environment of a youth/juvenile person. On the other hand, although extensive legislative provision is made for family group conferencing by the Children's Act 38 of 2005 in children's court proceedings and by the Child Justice Act 75 of 2008 in the child justice system in South Africa, the process has not yet reached its potential in terms of the implementation of the concept. Lastly, some recommendations are made which mainly aim to contribute to the implementation of the concept in South Africa, in that the model will eventually be fully developed and utilised for the benefit of individuals, children, their families and/or social network.&#x0D;

Non-invasive intradermal imaging of cystine crystals in cystinosis.

Development of noninvasive methodology to reproducibly measure tissue cystine crystal load to assess disease status and guide clinical care in cystinosis, an inherited lysosomal storage disorder characterized by widespread cystine crystal accumulation. To develop an unbiased and semi-automated imaging methodology to quantify dermal cystine crystal accumulation in patients to correlate with disease status. 101 participants, 70 patients and 31 healthy controls, were enrolled at the University of California, San Diego, Cystinosis Clinics, Rady Children's Hospital, San Diego and at the annual Cystinosis Research Foundation family conference for an ongoing prospective longitudinal cohort study of cystinosis patients with potential yearly follow-up. Intradermal reflectance confocal microscopy (RCM) imaging, blood collection via standard venipuncture, medical record collection, and occasional skin punch biopsies. The primary outcome was to establish an automated measure of normalized confocal crystal volume (nCCV) for each subject. Secondary analysis examined the association of nCCV with various clinical indicators to assess nCCV's possible predictive potential. Over 2 years, 57 patients diagnosed with cystinosis (median [range] age: 15.1 yrs [0.8, 54]; 41.4% female) were intradermally assessed by RCM to produce 84 image stacks. 27 healthy individuals (38.7 yrs [10, 85]; 53.1% female) were also imaged providing 37 control image stacks. Automated 2D crystal area quantification revealed that patients had significantly elevated crystal accumulation within the superficial dermis. 3D volumetric analysis of this region was significantly higher in patients compared to healthy controls (mean [SD]: 1934.0 μm3 [1169.1] for patients vs. 363.1 μm3 [194.3] for controls, P<0.001). Medical outcome data was collected from 43 patients with infantile cystinosis (media [range] age: 11 yrs [0.8, 54]; 51% female). nCCV was positively associated with hypothyroidism (OR = 19.68, 95% CI: [1.60, 242.46], P = 0.02) and stage of chronic kidney disease (slope estimate = 0.53, 95%CI: [0.05, 1.00], P = 0.03). This study used non-invasive RCM imaging to develop an intradermal cystine crystal quantification method. Results showed that cystinosis patients had increased nCCV compared to healthy controls. Level of patient nCCV correlated with several clinical outcomes suggesting nCCV may be used as a potential new biomarker for cystinosis to monitor long-term disease control and medication compliance.

Checklist for Early Recognition and Treatment of Acute Illness and Injury: An Exploratory Multicenter International Quality-Improvement Study in the ICUs With Variable Resources.

To determine whether the "Checklist for Early Recognition and Treatment of Acute Illness and Injury" decision support tool during ICU admission and rounding is associated with improvements in nonadherence to evidence-based daily care processes and outcomes in variably resourced ICUs. This before-after study was performed in 34 ICUs (15 countries) from 2013 to 2017. Data were collected for 3 months before and 6 months after Checklist for Early Recognition and Treatment of Acute Illness and Injury implementation. Checklist for Early Recognition and Treatment of Acute Illness and Injury implementation using remote simulation training. The coprimary outcomes, modified from the original protocol before data analysis, were nonadherence to 10 basic care processes and ICU and hospital length of stay. There were 1,447 patients in the preimplementation phase and 2,809 patients in the postimplementation phase. After adjusting for center effect, Checklist for Early Recognition and Treatment of Acute Illness and Injury implementation was associated with reduced nonadherence to care processes (adjusted incidence rate ratio [95% CI]): deep vein thrombosis prophylaxis (0.74 [0.68-0.81), peptic ulcer prophylaxis (0.46 [0.38-0.57]), spontaneous breathing trial (0.81 [0.76-0.86]), family conferences (0.86 [0.81-0.92]), and daily assessment for the need of central venous catheters (0.85 [0.81-0.90]), urinary catheters (0.84 [0.80-0.88]), antimicrobials (0.66 [0.62-0.71]), and sedation (0.62 [0.57-0.67]). Analyses adjusted for baseline characteristics showed associations of Checklist for Early Recognition and Treatment of Acute Illness and Injury implementation with decreased ICU length of stay (adjusted ratio of geometric means [95% CI]) 0.86 [0.80-0.92]), hospital length of stay (0.92 [0.85-0.97]), and hospital mortality (adjusted odds ratio [95% CI], 0.81 (0.69-0.95). A quality-improvement intervention with remote simulation training to implement a decision support tool was associated with decreased nonadherence to daily care processes, shorter length of stay, and decreased mortality.

Palliative Care Home Support Packages (PEACH): a carer cross-sectional survey

BackgroundIn December 2013, a partnership between five local health districts and a non-governmental organisation implemented the Palliative Care Home Support Packages (PEACH) Program. The PEACH Program aims to support palliative...

Family Conference In Primary Care Practice

From the Epidemiology Triangle, we can see that a person’s health status is influenced by 3 factors: host, agent, and the environment. The environment plays the biggest role as the cause of health problems, one of which is the family environment. Family can become a supporting factor or inhibiting factor in the successful management of patient’s cases. Therefore, a primary care physician/family physician needs to conduct family meetings to discuss and agree on solutions with the patient’s family by paying attention to inhibiting and supporting factors and find common solutions for the benefit of the patient.

集中治療領域での終末期患者とその家族に対するインフォームドコンセントにおける看護実践に関連する要因

集中治療領域での終末期患者とその家族に対するインフォームドコンセントにおける看護実践に関連する要因

Feasibility and acceptability of the "Day 100 Talk": An interdisciplinary communication intervention during the first six months of childhood cancer treatment.

Communication gaps arise early in the childhood cancer trajectory and may persist. The authors conducted a pilot study of the feasibility and acceptability of a communication intervention, the Day 100 Talk (D100). D100 involves an interprofessional family conference during initial months of treatment between oncologists, psychosocial clinicians, and parents, facilitated by a 3-part conversation tool. The authors enrolled English-speaking parents of children with nonrelapsed, nonprogressive cancer who were receiving continuity care from enrolled pediatric oncologists and psychosocial clinicians at a single site. The a priori feasibility threshold was 60% parent completion of the D100 intervention. Surveys from parents and professionals and debrief interviews with professionals assessed D100 acceptability. Thirty-seven parents (77%) and 38 oncology professionals (67%) enrolled. Twenty of 33 evaluable parents (61%) participated in a D100 family conference. Most commonly, parents did not complete the D100 intervention because of scheduling difficulties related to clinical team constraints. All 17 parents who completed a post-D100 survey agreed or strongly agreed that D100 participation was helpful. In debrief interviews, professionals identified D100 benefits, namely, stepping back to the big picture and getting on the same page, and barriers related to logistical challenges and professionals' anticipatory dread. The D100 intervention pilot demonstrates high acceptability among parents of children with cancer. Despite meeting the prespecified feasibility threshold, findings highlight important barriers to D100 dissemination, namely, perceived burdens on professionals. Potential strategies to reduce burden may include using virtual visit platforms, incorporating D100 elements across multiple visits, or prioritizing intervention delivery to parents with the greatest need for enhanced communication.

Parent Perspectives on Addressing Emotional Health for Children and Young Adults With Juvenile Myositis.

To assess parent perspectives regarding the emotional health impact of juvenile myositis (JM) on patients and families, and to assess preferences for emotional health screening and interventions. Parents of children and young adults with JM were purposively sampled for participation in focus groups at the Cure JM Foundation National Family Conference in 2018. Groups were stratified by patient age group (6-12, 13-17, and 18-21 years), and conversations were audiorecorded, transcribed verbatim, and co-coded via content analysis, with subanalysis by age group. A brief survey assessed preferences for specific emotional health interventions. Forty-five parents participated in 6 focus groups. Themes emerged within 2 domains: emotional challenges, and screening and interventions. Themes for emotional challenges comprised the impact of JM on: 1) patient emotional health, particularly depression and anxiety; 2) parent emotional health characterized by sadness, grief, anger, guilt, and anxiety; and 3) family dynamics, including significant sibling distress. Subanalysis revealed similar themes across age groups, but the theme of resiliency emerged specifically for young adults. Themes for emotional health screening and interventions indicated potential issues with patient transparency, several barriers to resources, the facilitator role of rheumatology providers, and preferred intervention modalities of online and in-person resources, with survey responses most strongly supporting child/parent counseling and peer support groups. JM is associated with intense patient and family distress, although resiliency may emerge by young adulthood. Despite existing barriers, increasing access to counseling, peer support groups, and online resources with rheumatology facilitation may be effective intervention strategies.