Exploring the family experience of children aged 2-4 years receiving daily vosoritide injections: A qualitative study.

PURPOSE: Vosoritide is administered as a daily subcutaneous injection in children with achondroplasia. In clinical trials, families of children aged 2-4 years reported difficulty with drug administration due to child fear, pain, and distress. Study aims were to gain a better understanding of the current vosoritide administration experience in this cohort and to investigate whether topical anaesthesia and ice application prior to injections improved the child and family experience. DESIGN AND METHODS: A qualitative descriptive study design ensured in-depth understanding of family experience. Parents were interviewed to explore experience of vosoritide administration for their child at two time points, before (Phase 1) and after (Phase 2) the introduction of topical anaesthesia and ice application prior to injections. Interviews were analysed using thematic analysis. RESULTS: Seven families participated. Children's ages ranged from 2 years 2 months to 3 years 11 months. Five themes emerged from data analysis: (1) The reality of the burden of care; (2) Child experience as the greatest obstacle; (3) Parents juggle multiple emotional considerations; (4) Many factors may impact experience; and (5) Short-term and long-term impacts. CONCLUSIONS: Administration of vosoritide in this cohort presents multiple challenges for families. Factors which influenced experience differed between families. Responses to topical anaesthesia and ice application also varied between children, improving administration experience for some children and worsening experience for others. PRACTICE IMPLICATIONS: This study highlights the need for individualised care for young children receiving daily injections. Support should be provided to families to identify factors that improve experience.

The Validity and Reliability of the Turkish Version of the Autism Family Experience Questionnaire (AFEQ).

The aim of this study was to examine the reliability and validity of the Turkish version of the AFEQ for Turkish parents of children with ASD. The Turkish-translated version of the AFEQ was administered to 241 parents of children aged 2-12 years with ASD to examine the construct validity and internal consistencies. Parents completed the Autism Behavior Checklist (ABC), and Quality of Life in Autism Questionnaire Parent version, along with the AFEQ. The mean age of the children of 241 individuals in the study group was 7.63 ± 3.02 and 88.4% (n = 213) were male. Cronbach's alpha coefficient was 0.921 of the total variance. Cronbach alpha coefficients are 0.813 for the "Experience of being a parent" subscale, 0.768 for the "Family Life" subscale, 0.810 for the "Child Development, Understanding and Social Relationships" subscale, and 0.804 for the "Child Symptoms (Feelings and Behaviour)" subscale. In conclusion, the translated and culturally adapted AFEQ shows good reliability and validity to measure the priorities of autistic children and their families in Turkey. It can also be useful in monitoring the effectiveness of intervention programs and changes in the child.

Enhancing family experience in the paediatric intensive care unit through the adoption of the family care journal: A single-center study.

BACKGROUND: Multidisciplinary patient care rounds are increasingly seen as a vital complement to patient care management. Family engagement in these rounds, especially in the paediatric population, is important to treatment and outcomes, but there is little information about family experience in the Paediatric Intensive Care Unit (PICU). AIMS: To develop a process using family care journals (FCJ) to systematically evaluate family experience in the PICU and identify needed supportive resources that will enhance their critical care stay. METHODS: This is a single-centre quasi-experimental design conducted at a large urban quaternary level freestanding children's hospital. A family care journal (FCJ) was distributed to families upon admission to PICU to serve as a resource tool during their stay. An electronic point of care (POC) questionnaire was used to assess families' experiences in the PICU. RESULTS: Three hundred sixty-six questionnaires were completed (100% response rate) and analysed. Overall, there was an improvement in all phases post FCJ implementation compared with the baseline. Seventy five percent of families found it a useful tool for communication with the PICU team. Open-ended comments revealed improvement opportunities related to communication, environment, and delay in care. Almost all commented on excellent nursing care. CONCLUSIONS: Introducing FCJ in a paediatric ICU is a practical approach, providing a cost-effective method to assess family experiences and gain insights for ongoing quality improvement efforts. Collaboration among all care team members, including nursing, medical, and administrative leaders, is crucial for empathetically addressing parental needs during hospitalization. RELEVANCE TO CLINICAL PRACTICE: Combining the use of journals and questionnaires provides the clinical team with an efficient means of collecting valuable feedback from parents regarding their experience in the PICU and the factors that foster ongoing commitment from families. Nurses play a crucial role in encouraging the adoption of these journals, as they promote greater parent involvement in their children's care.

The Effects of Health Disparities on Neonatal Outcomes.

The history of racism in the United States was established with slavery, and the carry-over effect continues to impact health care through structural and institutional racism. Racial segregation and redlining have impacted access to quality health care, thereby impacting prematurity and infant mortality rates. Health disparities also impact neonatal morbidities such as intraventricular hemorrhage and necrotizing enterocolitis and the family care experience including the establishment of breastfeeding and health care provider interactions.

Acceptability and Feasibility of Text Message Interface to Assess Parents' Real-time PICU Experiences.

INTRODUCTION: Parents of children in the pediatric intensive care unit (PICU) experience substantial stress; a parent's perception of their child's illness severity, more than objective measures, predicts psychological outcomes. No tools exist to assess parents' real-time experiences. This pilot study evaluated the feasibility and acceptability of a text-based tool to measure parental experience. METHODS: Inclusion criteria included PICU stay >48 h, physician approval, smartphone access, and English-speaking caregiver. Eligible parents received a text-based baseline survey and surveys every other day while hospitalized regarding their mood/experiences and optional open-ended questions regarding stressors. They received post-discharge follow-up surveys at 1 week and 1, 3, and 6 months. Follow-up surveys assessed mood and symptoms of depression, anxiety, and post-traumatic stress. Interviews and surveys about the interface were conducted 1 week and 3 months following discharge. Feasibility was assessed by descriptive statistics (eg, response rates), and acceptability was assessed by descriptive statistics (survey results) and thematic analyses of interviews. RESULTS: Of 20 enrolled participants, the first 5 were excluded due to technical issues. Of the 15 included, results demonstrated feasibility and acceptability. Most participants (86%) completed all surveys during the PICU stay and continued to complete surveys at a high rate: 79%-94% 3 months post-discharge. All participants agreed that the system was easy to use and were satisfied with the system at discharge, and 91% remained satisfied 3 months post-discharge. Additionally, 76% reported comfort, and 69% reported benefit. From the interviews, participants lauded the system's convenience and applicability of content. Some proposed changes to improve ergonomics. Many suggested this interface could help teams better support families. CONCLUSIONS: A text-based interface for measuring experience in the PICU is feasible and acceptable to parents. Further research can explore how this could identify parents most at risk of adverse psychological sequelae and lead to earlier supportive interventions.

Obtaining feedback from patients and their family in the emergency department.

Obtaining feedback from the patient and their family members regarding their experience of the care they received in the emergency department is important. This provides an extremely valuable opportunity for healthcare professionals to assess the quality of care and serves to highlight any areas of weakness or strength in the care experience. Through a synthesis of available literature, this article describes the challenges in measuring such an experience especially in emergency departments in Africa, and outlines tools that are currently available in literature to measure the patient and family experience and or satisfaction. Implementation considerations are outlined in order to provide recommendations for emergency department healthcare professionals wanting to undertake such assessments.

Acceptability and effects of acquiring an assistance or companion dog for families of children on the autism spectrum.

PURPOSE: Assistance and companion dogs have numerous positive effects for family of autistic children, such as supporting their rehabilitation and improving their quality of life. To date, very few studies have compared the effects of both types of dogs. This comparison, considering the limited access to assistance dogs, could be helpful for families wanting to adopt a dog. METHODS: An explanatory sequential design with a mixed-method approach was used. First, 85 parents (nassistance dogs = 57; ncompanion dogs = 28) of children aged between 3 and 17 years old (M = 10.73, SD = 3.67) completed an online questionnaire including sociodemographic questions and the Treatment Acceptability Rating Form-Revised (TARF-R). Then, 17 of these participants (nassistance dogs = 14; ncompanion dogs = 3) completed a semi-structured interview. RESULTS: The quantitative data analyses showed that parents with assistance dogs were significantly more satisfied: t (83) = -2.12, p = .037, d = 0.49. Significant associations between some sociodemographic variables (e.g., number of children, comorbid condition, reasons for acquiring a dog) and acceptability/satisfaction (TARF-R total scores) were found. The qualitative analysis revealed that families with both dog types observed positive effects. CONCLUSIONS: In brief, having an assistance dog constitutes a significant added value; nevertheless, both types of dogs are appreciated.

Parents of children on the autism spectrum show significantly higher levels of satisfaction with having an assistance dog to assist the rehabilitation of their child on the autism spectrum when compared to a companion dog.Assistance and companion dogs are both perceived as beneficial by parents and as an important source of support for the rehabilitation of children on the autism spectrum and other members of their family.Companion dogs trained specifically to assist the rehabilitation of children on the autism spectrum should be offered to families in the context of limited access to assistance dogs.

Disparities in Youth and Family Experiences of System-of-Care Principles by Level of Youth Need.

The extent to which mental health services for youths embody system-of-care (SOC) principles is an important quality indicator. This study tested whether youth and family experiences of SOC principles varied depending on youths' level of need after adjusting for sociodemographic and treatment factors. The relationship to caregiver-reported clinical outcomes was also examined. Using administrative data and cross-sectional surveys from a stratified random sample of 1124 caregivers of youths ages 5-20 within a statewide system, adjusted analyses indicated caregivers of youths with the most intensive needs were significantly less likely to report receiving care that embodied SOC principles, with deficits on six of nine items. Youths whose services embodied SOC principles experienced significantly greater improvement in caregiver-reported functioning even after adjusting for level of need. Results highlight disparities in SOC principles for youths with intensive needs and the need for policy and intervention development to improve care for this population.

Symptoms of Anxiety, Depression, and Stress among Families of Critically Ill Patients with COVID-19: A Longitudinal Clinical Trial.

Rationale: Families of critically ill patients with coronavirus disease (COVID-19) may be at particularly high risk for anxiety, depression, and post-traumatic stress disorder after hospital discharge. Objectives: To assess symptoms of anxiety, depression, and stress among families of patients with COVID-19 during and after intensive care unit (ICU) admissions and to use qualitative methods to determine the sources of emotional distress. Methods: Families of patients with COVID-19 who participated in an ICU study were approached for participation in this post-hospital discharge study. Participants completed the Hospital Anxiety and Depression Scale (HADS) and the Impact of Events Scale-Revised (IES-R) at up to three points during the ICU stay and once after the ICU stay. Mixed-effects models were used to compare trajectories of HADS and IES-R scores over the ICU and post-ICU periods. Telephone interviews with participants were evaluated using thematic content analysis. Results: Among the 90 families that participated from September 2020 to April 2021, 47 respective patients were alive and 43 were deceased. Average HADS anxiety, HADS depression, and IES-R scores after hospital discharge were significantly higher (greater symptom burden) among families of deceased versus surviving patients: 9.2 (95% confidence interval [CI], 7.8-10.6) versus 6.3 (95% CI, 4.9-7.6) (P < 0.01), 7.1 (95% CI, 5.7-8.6) versus 3.2 (95% CI, 2.3-4.1) (P < 0.001), and 36.1 (95% CI, 31.0-41.2) versus 20.4 (95% CI, 16.1-24.8) (P < 0.001), respectively. HADS anxiety and HADS depression scores began to diverge during the ICU stay, whereas IES-R scores diverged after the stay for families of surviving versus deceased patients. Qualitative analysis confirmed a higher burden of psychological symptoms among families of deceased patients. Memories from the ICU stay became a focal point for participants who lost their loved ones, whereas families of surviving patients were able to look positively toward the future. In addition, families of deceased patients often viewed friends and family as sources of stress, whereas families of surviving patients typically viewed their community as a source of support. Conclusions: Patient death was associated with symptoms of anxiety, depression, and post-traumatic stress disorder among families of ICU patients with COVID-19. Psychological support interventions may be most beneficial for families of patients who died of COVID-19. Clinical trial registered with www.clinicaltrials.gov (NCT04501445).

Family experiences and perceptions of intensive care unit care and communication during the COVID-19 pandemic.

INTRODUCTION: In 2020, during the first wave of the COVID-19 pandemic in Melbourne, visitor access to acute hospitals including intensive care units (ICUs) was initially barred, followed by a limit of one person per patient for one hour per day. This study explores the care and communication experienced by family members of ICU patients during this time. METHODS: This qualitative descriptive study was conducted at an Australian quaternary hospital. Semistructured phone interviews were conducted using an aide-memoire designed to understand participants' experiences as family of a patient during this time. Interviews were recorded, transcribed, and thematically analysed. FINDINGS: Twenty family members of patients in the ICU participated. Three major themes were identified: 'impact of restricting visiting procedures', 'family experiences of communication', and 'care and support'. Inflexible visiting restrictions had a momentous impact on families. Participants objected to having to nominate only two people to visit during the admission and the short visiting time limit. Some family members suffered extreme stress and anxiety during their absence from the bedside. Additional challenges were experienced by rural families, visitors with disabilities, and the young children of patients who were excluded. Communication with clinicians varied. Telehealth was valued by some but not universally embraced. The relationship between staff members and families and involvement in decision-making were unaffected. CONCLUSION: Families experienced significant psychological distress from being separated from their critically ill relatives. Patient care and involvement in decision-making appeared to be unchanged, but communication with staff felt to be lacking. Better alternatives to face-to-face communication must be sought to limit the impact of family separation on mental health. Families are a key link between the patient and clinicians and often play a major role in patient support and recovery after discharge. There is an urgent need to support them and facilitate meaningful engagement despite the obstacles.

A family perspective on parental psychosis: An interpretative phenomenological analysis study.

OBJECTIVES: While one third of people with a psychotic disorder are a parent, there has been little research to date examining the consequences of this from a whole family perspective. This study investigates families where a parent has experienced an episode of psychosis and compares and contrasts the family members' perspectives. DESIGN: This study was rooted in phenomenology and data were derived from in-depth semi-structured interviews. METHODS: Parents with a psychotic disorder who had a child aged between 3 and 11 in a UK NHS Trust were invited to take part in the study. Semi-structured interviews were conducted with these parents, with their child (if they were between the ages of 8 and 11), and with their partner or another close family member. Data were analysed using multiperspectival interpretive phenomenological analysis (m-IPA). RESULTS: Thirteen participants took part comprising of five parents, four children, three partners and one grandmother. Four themes were developed using m-IPA: (1) Parental psychosis impacts the whole family, (2) Psychosis and my role as a parent, (3) Secrecy and concealment surrounding parental psychosis, and (4) Pressures and vulnerabilities within the family system. CONCLUSION: Psychosis had a negative impact on all family members and secrecy existed between family members. The children in particular only had partial information about their parent's mental illness, which left them worried and confused. More work is needed to support these families to explain psychosis to the children.

CEO birth order and corporate social responsibility behaviors: The moderating effect of female sibling and age gap.

Corporate social responsibility (CSR) is one of the most important business strategies which helps enterprises obtain competitive advantage and improve performance. Scholars have conducted many beneficial studies on the driving factors of CSR behaviors from the perspective of CEO traits, but rarely focus on the impact of the CEO's early family experiences. This study aims to fill this research gap by investigating the influence of CEO birth order on firms' CSR behaviors, and further exploring the possible moderating effects of the presence of a female sibling and the age gap between the CEO and the closest sibling. This study takes Chinese non-financial private listed companies from 2010 to 2017 as the research samples, and empirically tests the relationship between CEO birth order and a firm's CSR behaviors. The empirical results show that CEO birth order negatively influences corporate social responsibility behaviors, and this relationship would be weakened when the CEO has a female sibling or the age gap between CEO and the closest sibling is larger. This paper extends the research on personal family factors from the field of social psychology to the business field and finds a new driving factor of corporate social responsibility behavior from the perspective of the CEOs' early family factors.

Understanding the Experiences of Living With an Artificial Eye in Children With Retinoblastoma-Perspectives of Children and Their Parents.

Background: Retinoblastoma is a rare form of pediatric eye cancer for which enucleation is a common treatment modality. There is an increasing focus upon the impact of enucleation on children and families. This study aimed to explore the experiences of children and their families following enucleation to consider the barriers that may be encountered when adjusting to living with an artificial eye and identifying the support services and strategies used to address these barriers. Methods: Using a descriptive qualitative approach, interviews were conducted with 12 parents and seven children and thematic analysis was used to identify four themes representing the perspective of parents and children. Results: Parent themes identified were (a) entry into the world of retinoblastoma; (b) the importance of specialist support; (c) a family learning to cope; and (d) navigating school. The perspectives of children were (a) the importance of preparation and play; (b) positive reinforcement and hospital support; (c) support and openness at home; and (d) the importance of good school planning. Two overarching themes related to parent and child adaptation were also identified. Discussion: The study findings reveal that the process of adapting to living with an artificial eye extended to influencing decisions around parenting, learning to advocate for their child, and supporting children through school and peer relationships. For children, the importance of ongoing support and information was vital to enhance understanding, adaptation, and development of independence. Overall, the study suggests that children and families undergoing enucleation need continuing, individualized, and specialist support.

Experience of annual events in the family and social adjustment of school-age children.

BACKGROUND: Parent-child relationships, the rearing attitudes of parents toward their children as well as the interactive relationships, such as play and cultural activities that parents and children enjoy together, serve as important factors in predicting a child's growth and development. These experiences of annual events celebrated with the family may be related to the school-age child's development. However, this relationship has not been investigated sufficiently. Therefore, this study aimed to identify the relationship between the experience of annual events observed in the family and a child's social adjustment. METHODS: In 2019, a self-administered questionnaire survey targeting fifth graders (ages 10-11) in Japan was conducted with children's parents. Major survey items included participants' characteristics (child's sex, family composition, siblings, household income, and parents' educational backgrounds), annual events observed in the family (Setsubun or the day before the start of spring, Mother's Day, Father's Day, the Tanabata or Weaver Festival, Respect for the Aged Day, Winter solstice, etc.), and the child's social adjustment (Strengths and Difficulties Questionnaire). A total of 653 children who met the criteria of not having any developmental disorders were included as participants for the analysis. RESULTS: The participants had celebrated an average of 15.47 (± 5.52) annual events with their families that year. The number of annual events celebrated was significantly related to family composition and the parents' educational backgrounds. We found that children who came from families with numerous experiences of annual events were more likely to have higher prosocial behavior and were less likely to have externalizing or internalizing problems. The same pattern was found even after adjusting for the family's socioeconomic background and other factors; that is, children who came from families having diverse experiences of annual events were more likely to show prosocial tendencies. CONCLUSIONS: Our findings suggest that the experience of annual events observed with family potentially enhances a child's prosocial behavior. Thus, celebrating and preserving cultural and personal events in the amily context may be an important developmental experience in terms of children's social adjustment.

The Experiences and Needs of Families of Comatose Patients After Cardiac Arrest and Severe Neurotrauma: The Perspectives of National Key Stakeholders During a National Institutes of Health-Funded Workshop.

OBJECTIVES: Severe acute brain injury (SABI) from cardiac arrest and traumatic brain injury happens suddenly and unexpectedly, carrying high potential for lifelong disability with substantial prognostic uncertainty. Comprehensive assessments of family experiences and support needs after SABI are lacking. Our objective is to elicit "on-the-ground" perspectives about the experiences and needs of families of patients with SABI. DESIGN: Two-phase qualitative study of families and multidisciplinary U.S. healthcare professionals (mHCPs) with expertise in SABI: Phase 1 included semistructured interviews to generate formative findings; phase 2 entailed facilitated discussions to confirm and expand initial findings. SETTING: Phase 1: academic medical center; phase 2: virtual workshop. SUBJECTS: Phase 1 included seven family members and 12 mHCPs. Phase 2 included nationally recruited stakeholders (17 family members and 12 mHCPs). INTERVENTION: None. MEASUREMENTS AND RESULTS: We explored: 1) what are families' needs in the first 48 hours? 2) How are these needs addressed? and 3) How can hospitals better meet these needs? Qualitative analysis included inductive and deductive approaches guided by a conceptual ecological model. Four major needs were identified: 1) challenges in coping with uncertainty in early prognostication, 2) inattention to physical needs of family, 3) deficits in compassionate and consistent communication, and 4) need for engagement with families as stakeholders in improving future practices. Participants' recommendations included: 1) ways to communicate more clearly and consistently, 2) better assistance with navigating resources and access to places for families to care for themselves, and 3) opportunities for families to remain connected with their loved ones, social support networks, and the clinical team. CONCLUSIONS: Stakeholders identified novel insights regarding families' experiences during the hospitalization of comatose SABI patients and factors that can contribute to improved decision-making and physical/emotional outcomes. Interventions to address these unmet needs are promising targets to improve outcomes.

A 6-y retrospective cohort study of family satisfaction with critical care and decision-making in an Australian intensive care unit.

BACKGROUND: Partnering with patients and families to make decisions about care needs is a safety and quality standard in Australian health services that is often not assessed systematically. OBJECTIVE: The objective of this study was to retrospectively evaluate satisfaction with care and involvement in decision-making among family members of patients admitted to the intensive care unit (ICU). METHODS: A retrospective cohort analysis of a satisfaction survey administered to family members of patients admitted to an ICU in an Australian metropolitan tertiary care hospital from 2014 to 2019 was conducted. The Family Satisfaction in the Intensive Care Unit questionnaire (FSICU) questionnaire was used to assess overall satisfaction, satisfaction with care, and satisfaction with decision-making on a scale from "poor" (0) to "excellent" (100). RESULTS: In total, 1322 family members fully completed the survey. Respondents were typically direct relatives of ICU patients (94.2%) with an average age of 52.6 years. Most patients had an ICU length of stay <7 d (56.8%), with most patients being discharged to the ward (96.8%). The overall mean satisfaction score was high among respondents (90.26%). Similarly, mean satisfaction with care (93.06%) and decision-making (89.71%) scores were high. Satisfaction with decision-making scores remained lower than satisfaction with care scores. Multivariable modeling indicated that those younger than 50 years reported higher satisfaction scores (p = 0.006) and those with prolonged lengths of stay in the ICU were associated with lower overall satisfaction scores (p = 0.039). Despite some criticism of waiting times and noise levels, responses showed sincere gratitude for patients' treatment in the ICU and appreciation for the care, skill, and professionalism of the staff. CONCLUSION: Very high satisfaction levels were reported by family members during this study. Routine, prospective evaluations of family member satisfaction with ICU experiences are feasible and can be leveraged to provide insight for clinicians and administrators seeking to improve family satisfaction with decision-making and care in ICU settings and meet national standards.

Family perceptions and experiences of living with patients with fibromyalgia syndrome.

PURPOSE: To explore the perception of the illness and the experience of the illness for relatives of fibromyalgia syndrome (FMS) patients. MATERIALS AND METHODS: This qualitative interpretative study adopted a grounded theory research methodology with a purposive sample. We conducted a focus group with 11 family members of FMS patients. There were six men and five women, five were spouses and six were children (four husbands and one wife, and five daughters and one son). RESULTS: Three categories of family perceptions of FMS emerged: (1) manifestations of FMS; (2) FMS is regarded as a psychological problem; (3) FMS interferes with traditional gender roles. Three categories of family members' experience of living with FMS patients were identified: (1) emotional concerns and exhaustion; (2) overprotective family members; and (3) escape coping. CONCLUSIONS: Family members feel emotionally burdened, can be overprotective and over-involved and find it difficult to set limits ultimately succumbing to a vicious cycle of caregiving and emotional exhaustion from which they find it difficult to escape. As the perceptions and experiences of family members of FMS patients are not commonly studied, the present findings offer new insights for families and elucidate important points of intervention.Implications for rehabilitationBecause family members tend to dismiss fibromyalgia as a psychological problem for which ignoring or distracting the patient is the best approach to coping, rehabilitation programs should give family members education and training to develop the ability to better understand fibromyalgia and reduce stereotypes about the condition.Rehabilitation programs should work to identify and manage marital and family systems dysfunction that may be interfering with fibromyalgia patients' adjustment and quality of life.Family members often engage in maladaptive escape coping to manage the demands of living with patients with fibromyalgia, and rehabilitation professionals should be ready to engage and refer to allied specialists to assist family members in finding alternatives for more effective coping approaches that improve patient and family mental health and social relations.Rehabilitation programs for fibromyalgia patients should use a gender perspective and emphasize patient and spouse equality in activities of daily living as many patients and family members feel uncomfortable about not fulfilling traditional gender roles.

Family Experience of Caregiver Burden and Health Care Usage in a Statewide Medical Home Program.

OBJECTIVE: To evaluate family-reported caregiver experiences and health care utilization of patients enrolled in the Pennsylvania Medical Home Program (PA-MHP) statewide practice network and compare results to PA-MHP practices' Medical Home Index (MHI) scores. We hypothesized families enrolled in higher-scoring patient-and-family-centered medical homes (PCMH) on completed MHIs would report decreased caregiver burden and improved health care utilization. METHODS: We analyzed surveys completed by families receiving care coordination services in PA-MHP's network and each practice's mean MHI score. A total of 3221 caregivers completed surveys evaluating hours spent coordinating care/week, missed school/workdays, sick visits, and emergency department (ED) visits. A total of 222 providers from 54 participating PA-MHP practices completed the nationally recognized MHI. Family/practice demographics were collected. We developed multivariate logistic regression models assessing independent associations among family survey outcomes and corresponding practices' MHI scores. RESULTS: Families enrolled in high-scoring PCMHs had decreased odds of spending >1 h/wk coordinating care (odds ratio [OR] 0.82, adjusted OR [aOR]: 0.70, 95% confidence interval [CI] 0.55-0.90), missing workdays in the past 6 months (OR 0.82, aOR: 0.72, 95% CI 0.69-0.97), and ED visits in the past 12 months (OR 0.83, aOR: 0.81, 95% CI 0.65-0.99) in comparison to families enrolled in lower-scoring PCMHs. Families enrolled in higher-scoring PCMHs did not report fewer sick visits despite fewer ED visits, indicating more appropriate health care utilization. High-scoring PCMHs had lower percentages of publicly insured and low-income children. CONCLUSIONS: Higher-scoring PCMHs are associated with decreased caregiver burden and improved health care utilization across diverse PA practices. Future studies should evaluate interventions uniformly improving PCMH quality and equity.

The impact that family members' health care experiences have on patients' trust in physicians.

BACKGROUND: A family member's negative experiences with medical care have long-term effects on a patient's attitudes and emotions. However, the impact of family members' experiences on patients' trust in their own physicians and in physicians generally is poorly understood. This study aims to quantify these associations. METHODS: A cross-sectional online survey involving adults with non-communicable diseases (cardiac disease, diabetes, cancer, depression, and rheumatic disease) was conducted in Japan during April 2020. The main exposure variable was dissatisfaction with the medical care that family members had received. The main outcomes were patients' (N = 661) own trust in their personal physicians and in physicians generally. The study adopted the Japanese version of the Abbreviated Wake Forest Physician Trust Scales. Both 5-item scales (general and individual physician trust) were translated and validated for the study. The total scores were transformed into a scale of 0-100 points. A series of linear mixed-effects models with consideration for clustering effect by prefectures were fit. RESULTS: The results showed a lower rating for trust in physicians generally as compared to trust in the respondent's personal physician (mean 57.0 vs. 66.4 points; p < 0.001). Furthermore, dissatisfaction with a family member's medical care was associated with lower trust in physicians generally (mean difference - 9.58, 95 %CI -12.4 to -6.76). Interestingly, dissatisfaction with a family member's care was also associated with lower trust in the respondent's personal physician (mean difference - 3.19, 95 %CI -6.02 to -0.36), but the magnitude of this association was weaker. The lower trust in personal physicians may be mediated by reduced trust in physicians generally. CONCLUSIONS: We suggest that physicians enquire about past patients' negative experiences, including dissatisfaction with family members' medical care, to repair hidden loss of trust, when they sense that patients doubt them or physicians generally.

Written Care Summaries Facilitate Communication Between Families and Providers of ICU Patients: A Pilot Study.

ICU providers may invite families to participate in daily rounds to inform them of the patient's condition and to support their emotional well-being. Daily written summaries of care may provide complementary benefits. DESIGN: Qualitative interviews with surrogates of ICU patients who received daily written summaries of care. SETTING: Single, urban academic medical center. PATIENTS/SUBJECTS: A convenience sample of 30 surrogates of nondecisional, medical ICU patients. INTERVENTIONS: Daily written summaries detailed each of the patient's main ICU problems, the presumed causes of each of the problems, and the medical team's plan to address each of the problems for each ICU day. MEASUREMENTS AND MAIN RESULTS: There were four ways that written summaries affected the participant's experience: 1) providing clarity to participants regarding the patient's condition, 2) facilitating participant understanding of the patient's clinical course, 3) facilitating communication between participants and medical providers, and 4) facilitating communication between participants and other family members. Overarching themes were that summaries were understandable, had appropriate level of detail, and added value to the ICU experience. CONCLUSIONS: In this pilot study, family members had positive impressions of receiving daily written summaries of care. Further study is needed to determine the extent to which written communication may affect family and patient outcomes.