Parent-provider Communication Research Articles

Effectiveness of caregiver educational materials for paediatric community-acquired pneumonia in the emergency department: a qualitative study.

The objective of this study was to better understand caregiver perspectives on educational materials relating to paediatric community-acquired pneumonia and antibiotic stewardship in the emergency department setting. This was a phenomenologically informed qualitative study. Caregivers of young children in Hamilton, Ontario were presented with four educational materials (animated video, physician led lecture-style video, caregiver led testimony-style video, and a printed brochure) providing information relating to treatment strategies for community-acquired pneumonia. Caregivers were then asked open-ended questions about how they felt about the effectiveness of the media used. The principles of conventional content analysis guided the coding and synthesis of the transcribed interviews. Eleven caregivers were interviewed. Most caregivers preferred the animated video and brochure to the lecture-style physician video and caregiver testimonial video. Common themes for effective educational materials included visually attention-grabbing graphics, accessible language, and formats they could reference following their visit (e.g. brochure). The busy nature of the emergency department setting can impede effective communication between clinicians and parents. Employing educational materials may allow for more informed parent-provider communication on care decision making. Caregivers in our study prioritized the simplest information formats for education around community-acquired pneumonia and antimicrobial stewardship which could be referenced following discharge. This was best accomplished by short, animated videos and brochures. Results from this study can inform development of future educational materials used in paediatric emergency department settings to optimize caregiver education and corresponding care plan adherence.

Parent-provider communication dynamics during the pediatric oncology diagnostic process in Guatemala: A qualitative study.

Effective communication is founded on bidirectional participation from families and healthcare providers. In adult medicine, bidirectional communication promotes treatment adherence and builds the family-provider relationship. However, the relationship between communication styles in pediatrics remains poorly understood, particularly in culturally diverse settings. This study aims to investigate parent-provider communication dynamics and parental involvement during diagnostic cancer communication in Guatemala. This qualitative study included 20 families of children with cancer and 10 providers at Unidad Nacional de Oncología Pediátrica in Guatemala. Psychoeducation and diagnostic conversations between parents, psychologists, and oncologists were recorded and thematically analyzed using a priori and novel codes exploring communication behaviors, parental engagement, and interpersonal dynamics. Participating parents had children with various diagnoses. Only 15% of fathers and 5% of mothers reported education beyond primary school. Providers spoke 68% of words during psychoeducation and 85% of words during diagnosis conversations. Providers used supportive communication behaviors providing explanations, demonstrating verbal attentiveness, and soliciting questions and non-supportive behaviors including paternalistic talk. Parental participation was considered active when they asked questions, expressed hopes or concerns, or asserted their opinions, and non-active when participation was limited to brief responses to closed-ended questions. Supportive provider communication often encouraged active participation; non-supportive communication did not. Furthermore, active parental participation prompted supportive communication from providers, while non-active participation did not. Our findings highlight the bidirectional nature of effective communication, establishing that provider communication styles both influence and are influenced by parental participation, and emphasizing the importance of supportive provider communication for patient-centered care.

Caregiver knowledge and attitudes relating to paediatric pneumonia and antimicrobial stewardship: a qualitative study

ObjectiveThe objective of this study was to understand caregiver perspectives and experiences relating to the treatment of paediatric community-acquired pneumonia (CAP).Design, setting and patientsThis was a phenomenological qualitative study involving...

Parent Satisfaction With a Telehealth Parent Coaching Intervention to Support Family Participation.

COVID-19 catalyzed telehealth practice creating opportunities for clients and providers to discern best applications. Parent satisfaction with services supports partnership within therapy processes, potentially augmenting outcomes. We examined parent satisfaction levels and experiences with the telehealth approach of a parent coaching intervention for families of children with special health care needs (CSHCNs). We used a mixed-methods descriptive design. Fifteen parents completed the Telehealth Usability Questionnaire (TUQ) and a semistructured interview. We analyzed TUQ ratings using descriptive statistics, and we thematically analyzed participants' telehealth experiences. Parents found telehealth useful, easy to use, effective, reliable, and satisfactory. Parents described that telehealth addressed needs conveniently, enhanced parent-provider communication, and fostered shared parent involvement. Telehealth appears to be a satisfactory occupational therapy service delivery approach for parents of CSHCN. Findings build preliminary evidence for understanding for whom telehealth is well suited, supporting determination of relevant, fundable telehealth services.

Let’s Talk About Antibiotics: a randomised trial of two interventions to reduce antibiotic misuse

BackgroundChildren with acute respiratory tract infections (ARTIs) receive ≈11.4 million unnecessary antibiotic prescriptions annually. A noted contributor is inadequate parent–clinician communication, however, efforts to reduce overprescribing have only indirectly targeted...

Experience of care of hospitalized newborns and young children and their parents: A scoping review.

IntroductionSeveral global initiatives put parent involvement at the forefront of enabling children’s well-being and development and to promote quality of care for newborns and hospitalized young children aged 0–24 months. Scanty evidence on mistreatment such as delays or neglect and poor pain management among newborns exists, with even less exploring the experience of their parents and their hospitalized young children. To address this gap, authors reviewed research on experience of care for hospitalized young children and their parents, and potential interventions that may promote positive experience of care.MethodsA scoping review of English language articles, guidelines, and reports that addressed the experiences of care for newborns and sick young children 0–24 months in health facilities was conducted. Multiple databases: PubMed, PROSPERO, COCHRANE Library and Google Scholar were included and yielded 7,784 articles. Documents published between 2009 and November 2020, in English and with evidence on interventions that addressed family involvement and partnership in care for their sick children were included.ResultsThe scoping review includes 68 documents across 31 countries after exclusion. Mistreatment of newborns comprises physical abuse, verbal abuse, stigma and discrimination, failure to meet professional standards, poor rapport between providers and patients, poor legal accountability, and poor bereavement and posthumous care. No literature was identified describing mistreatment of hospitalized children aged 60 days– 24 months. Key drivers of mistreatment include under-resourced health systems and poor provider attitudes. Positive experience of care was reported in contexts of good parent-provider communication. Three possible interventions on positive experience of care for hospitalized young children (0–24 months) emerged: 1) nurturing care; 2) family centered care and 3) provider and parental engagement. Communication and counseling, effective provider-parental engagement, and supportive work environments were associated with reduced anxiety and stress for parents and hospitalized young children. Few interventions focused on addressing providers’ underlying attitudes and biases that influence provider behaviors, and how they affect engaging with parents.ConclusionLimited evidence on manifestations of mistreatment, lack of respectful care, drivers of poor experience and interventions that may mitigate poor experience of care for hospitalized young children 0–24 months especially in low resource settings exists. Design and testing appropriate models that enhance socio-behavioral dimensions of care experience and promote provider-family engagement in hospitals are required.

Firearms, Physicians, Families, and Kids: Finding Words that Work

Firearms, Physicians, Families, and Kids: Finding Words that Work

Parent-Provider Communication in Hospitalized Children with Advanced Heart Disease

Communication between parents and providers of children with cardiac disease is essential to parental decision-making. This study explored how parents of hospitalized children with advanced heart disease perceived communication with their child's providers. We performed a prospective survey study of parents and physicians of children with advanced heart disease age 30days to 19years admitted to the hospital for > 7days over a 1-year period at a single institution (n = 160 parent-provider pairs). Descriptive statistics were primarily used and Fisher exact tests and kappa statistics were used to assess agreement. All parents rated communication with their child's care team as excellent, very good, or good, but 56% of parents reported having received conflicting information. Parental perception of "too many" people giving them information was associated with overall poorer communication and less preparedness for decision-making. One-third (32%) of parents felt unprepared for decision-making, despite 88% feeling supported. Parents and physicians showed poor agreement with respect to overall adequacy of communication, receipt of conflicting information, and evaluation of the most effective way for parents to receive information. Interventions involving physician communication training and proactive assessment of parent communication preferences may be beneficial.

Parental Decision-making: Intersections of Hope, Communication, Relationships, and Emotions

<h3>Category/Date</h3> Research Poster presented at NAPNAP's 42^nd National Conference on Pediatric Health Care, March 24^th, 2021. https://napnap21.org/community/#/home <h3>Background</h3> Children born with complex life-threatening chronic conditions (CLTCs) often require highly complex care and decision-making. Previous research has documented that decisions about healthcare treatment can be intimately connected with personal perceptions and interpretations of information, communication, and parent empowerment. Parents of children born with CLTCs often experience an uncertain trajectory in which hope plays a critical, but largely unexplored, role in their decision-making. <h3>Purpose</h3> This qualitative descriptive study aimed to explore how parental and provider hope may influence decision-making and care for a child born with a CLTC. <h3>Methods</h3> This was a Duke University IRB approved study. Data collection for each case was derived from qualitative semi-structured interviews occurring at least monthly until one year after study enrollment, unless death of the child intervened. Interview questions targeted parental and provider perceptions of previous or anticipated decisions, experience caring for the infant, and how provision of care had been affected by decisions made. We utilized a subset of 193 interviews with parents and healthcare providers responsible for the care of 10 infants with complex congenital heart diseases (cases), selected from a large prospective longitudinal study on parent and provider decision-making for 35 infants with CLTCs. Enrollment of infants with complex congenital heart disease began at birth for those with a prenatal diagnosis, or otherwise at time at diagnosis. Each case consisted of an infant, at least one parent, and at least three providers (e.g. attending physician, nurse, nurse practitioner). Transcripts were uploaded to and analyzed in NVivo 12 and a codebook was defined. Generated themes illustrated the intersection of hope with the dynamics of communication, relationships, and emotions that in turn influence decision-making. <h3>Results</h3> Through our analysis, we developed a central framework of the effects of hope on decision-making through the influence of three factors: emotions, relationships, and communication. The linkages between these concepts are integral, yet fluid and nonlinear. Overall, parental hope remained strong over the course of the study, and played a pivotal role in parents' decision making despite changes in relationships with providers and other adults, fluctuating emotions, and both positive and negative perceptions of communication. Both parents and professional health care providers express a range of emotions which impact communication, that appear to be strongly linked to hope and decision-making. Additionally, relationships as well as communication between parents and provider both appeared responsible for and responsive to changes in hope which impacted parental and provider decision making for the child with CLTCs. <h3>Discussion/conclusion</h3> Multiple barriers exist to parent-provider communication, including structural (e.g. rotating providers) as well as regarding parental characteristics (e.g. education, age, medical insurance) and opinions and judgements placed on parents by providers. Parents of children with CLTCs benefit from emotional and practical support, trusting relationships with providers, agency in and information about their child's care. To support these needs, it is crucial that healthcare providers receive training to become comfortable having difficult, trusting, and honest conversations with parents and be mindful of parents' own needs and responsibilities.

Investigating direct and indirect influences of parent personality on child medication adherence

ABSTRACT This study examined whether parent-provider communication or parent involvement in the child’s regimen mediated relationships between select parent personality traits and child medication adherence in a sample of 270 parents of children recently prescribed a medication. Recruitment occurred via MTurk. Parent neuroticism had an indirect effect on child medication adherence to dosing schedule (95% CI [−.030, −.002]) and global adherence (95% CI [−.038, −.003]) via a latent communication variable comprised of medication-specific and general parent-provider communication measures. Parent conscientiousness had an indirect effect on adherence to dosing schedule (95% CI [−.20, −.01]) and global adherence (95% CI [−.29, −.04]) via parent-provider communication. Conscientiousness also had an indirect effect on adherence to dosing schedule (BCa CI [−.106, −.003]) and global adherence (BCa CI [−.27, −.01)] via parent involvement. Findings support parent personality as a risk factor for pediatric nonadherence and suggest modifiable intervention targets.

Abstract A013: Parental health communication and satisfaction with medical providers of childhood cancer survivors: Differences by race/ethnicity and language

Abstract Purpose: Among childhood cancer survivors (CCS), parents inherently take on the role of informal caregivers. Effective communication between patient and provider or caregiver contributes to better treatment decision making and patient health outcomes. However, few studies have examined the frequency and scope of communication among childhood cancer survivors, caregivers, and medical providers. The purpose of this study was to examine the association between Hispanic ethnicity and language spoken with communication and satisfaction with their CCS health care provider. We hypothesized that Spanish-speaking Hispanic parents would have more barriers with provider communication and would be less satisfied with medical providers than English-speaking Hispanics and non-Hispanic parents. We also hypothesized that Spanish-speaking Hispanic parents would have greater communication with their child about their diagnosis. Methods: We analyzed data from parents of CCS, who were selected from the Los Angeles Cancer Surveillance Program and had been diagnosed between 2000 and 2007 at Children's Hospital Los Angeles (CHLA) or Miller Children's Hospital, Long Beach. We used ANOVA and chi-square statistics to test for differences in demographic characteristics. Results: A total of 173 parents participated in this study, including 50 Spanish-speaking Hispanics, 49 English-speaking Hispanics, and 74 English-speaking non-Hispanics. Spanish-speaking Hispanics were younger, had less than high school education, were lower income, and were less likely to have health care coverage compared to English-speaking Hispanics and non-Hispanic parents. Spanish-speaking Hispanic parents were more likely to report talking to their child about his/her needs for cancer-related follow-up care (p&amp;lt;.001) and health insurance issues (p=.01). Regardless of language spoken, Hispanic parents were more likely to receive health information about their child's cancer from hospital sources. Spanish-speaking Hispanic parents were more likely than English-speaking Hispanics and non-Hispanic parents to report difficulties with written information (p=.02) and understanding doctors due to language barriers (p=.003). However, there was no statistically significant difference by ethnicity/language in parent satisfaction with their child's health care provider or in receiving a survivorship care plan. Conclusion: Despite reporting similar rates of satisfaction with CCS medical providers, Spanish-speaking parents were more likely to report communication barriers with providers. Nevertheless, in order to build sustainable relationships with providers, language barriers need to be addressed to improve communication effectiveness. In future studies, we will explore the role of parent-child and parent-provider communication on their health outcomes. Citation Format: Carol Y. Ochoa, Lourdes Baezconde-Garbanati, Joel Milam. Parental health communication and satisfaction with medical providers of childhood cancer survivors: Differences by race/ethnicity and language [abstract]. In: Proceedings of the Eleventh AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2018 Nov 2-5; New Orleans, LA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl):Abstract nr A013.

Caregiver-provider communication after resection of pediatric brain tumors.

Because caregivers are a crucial part of a child's medical care, it is important to understand how to best communicate with them during hospitalization. Qualitative research can elucidate the best strategies for effective parent-provider communication. This study aims to reveal communication styles of neurosurgery team members, and to identify areas for improvement in the future. Caregivers of children with a newly diagnosed brain tumor requiring neurosurgery were enrolled during their child's hospitalization. During routine follow-up clinic visits within 3 months after diagnosis and tumor resection, caregivers participated in a semistructured interview, which assessed the quality of communication with the neurosurgery and oncology teams during hospitalization. Interviews were audio-recorded, transcribed, and coded for common themes until thematic saturation was reached. During caregiver interviews (N = 22), several domains were discussed including communicating the diagnosis to the patient and siblings, to the rest of the family/support network, and with the neurosurgery team. Regarding parent-neurosurgeon communication, 82% of caregivers identified at least one positive aspect and 55% identified at least one negative aspect of communication. Caregivers who provided positive feedback appreciated that their neurosurgeon was thorough (73%), direct (27%), or compassionate (14%). They also valued when providers would speak "on my level" (18%) and would speak directly to the patient (27%). In terms of negative feedback, caregivers identified miscommunications (32%), discussing the diagnosis in front of the child before feeling prepared to do so (14%), and a lack of clarity about expectations, medications, or treatment (32%). These data provide specific ways in which neurosurgery providers have communicated effectively with caregivers and identify areas for improvement. Results have been used to develop a navigator-led intervention geared toward improving parent-provider communication during hospitalization for resection of a brain tumor.

A randomized controlled trial examining an exam room poster to prompt communication about weight.

Recognition of childhood weight status is important to the adoption of healthy lifestyle behaviours. We assessed whether an exam room educational poster addressing weight and healthy lifestyle behaviours was acceptable to parents, prompted parent-provider communication or improved parental weight perception accuracy. In this multi-site randomized controlled trial, exam rooms were randomized to display the posters (English and Spanish) or not. Children ages 3 to 8 years (N = 965) attending well visits were weighed and roomed per usual clinic protocol. After the visit, parents completed a questionnaire assessing demographics, child weight status perceptions and whether they discussed weight status with provider or were shown growth charts. We used separate logistic regression analyses to examine associations between intervention status and: asking provider about child weight, being shown growth charts, and accuracy of weight perception, adjusting for covariates and clustering by exam room. Of the parents who saw the poster, 97% liked seeing it and reported greater understanding of weight status visualization (96%) and healthy lifestyle behaviours (94%). Parents who saw the poster were more likely to report being shown a growth chart (OR 1.87, 95% 1.06, 3.30) but were not more likely to ask about their child's weight status nor accurately report their child's weight status. An educational exam room poster about healthy weight was well-received by parents and prompted providers to show the child's growth chart but did not prompt parent-initiated conversations about weight status nor improve parental weight perception accuracy.

Reductions in parent interest for antibiotics following a 2-minute tablet-delivered intervention in pediatric outpatient clinics.

Purpose Approximately 11.4 million or 29% of prescriptions given to children with acute upper respiratory tract infections (ARTIs) annually in outpatient pediatric care are unnecessary. Providers consistently report pressure from parents as a contributing factor. While decreases in parental desire for antibiotics have been documented, some parents still harbor misconceptions that contribute to high interest in antibiotics. Enhancing parents’ understanding of appropriate antibiotic use may reduce their interest in antibiotics and support better parent-provider communication. Methods We investigated the impact of a 90 second gain-framed (i.e., emphasizing the positive aspects of a decision) animated, educational video promoting cautious …

Parent and Provider Perspectives on the Diagnosis and Management of Autism in a Chinese Immigrant Population.

Minority families experience disparities in the diagnosis and management of autism spectrum disorder (hereafter "autism"). To date, the experiences of Chinese immigrant families in the United States have not been explored. Utilizing parent and provider perspectives, this research sought to identify barriers and facilitators to the diagnosis and management of autism among Chinese immigrant children. We conducted semistructured qualitative interviews with 16 parents of Chinese children diagnosed with autism and 16 providers who assist in the diagnosis and management of autism. Participant characteristics were analyzed utilizing descriptive statistics. Interviews were audiorecorded, transcribed, translated, and independently coded by 2 researchers until consensus was reached. Coded data were analyzed using a modified grounded therapy approach. Parents and providers both identified cultural beliefs as an influence on the understanding and acceptance of autism as a diagnosis. There was a high degree of alignment in themes related to barriers to health care access and parent-provider communication. Recommendations to improve the system of care include (1) supporting communication, (2) cultural sensitivity, and (3) care coordination programming. Findings reinforce that diagnosis and treatment of autism should take into account culturally specific beliefs about child developmental norms and should address systems-, provider-, and family-level barriers.

Parent-provider paediatric literacy communication: Acurriculum for future primary care providers.

BackgroundReach Out and Read promotes early literacy and school readiness by incorporating book delivery and anticipatory guidance into well-child visits. There is a need to train future healthcare providers in the knowledge and skills to communicate with parents/caregivers about early childhood literacy. We developed and evaluated a curriculum to improve learners’ knowledge, attitudes, and skills towards the incorporation of parent-provider literacy communication into well-child visits.MethodsFamily medicine residents (n = 30), physician assistant students (n = 36), and medical students (n = 28) participated in a curriculum consisting of service learning, online didactic training, objective structured clinical exams (OSCEs) and a debriefing session. Standardized patients (SPs; 6 months to 5 years) and standardized patient caregivers were recruited and trained. Learners were evaluated on their abilities to offer books to patients, provide anticipatory guidance, and demonstrate parent-provider communication skills. Knowledge, attitudes, and satisfaction were collected pre- and post-curriculum.ResultsSignificant increases in total knowledge were observed after completing curriculum activities (p < 0.001). All attitudes improved after training (p < 0.05). All learners (100%) recommended that caregivers talk back and forth with their 6‑ to 12-month-old babies and make eye contact. Few (18.2%) learners recommended playing games like ‘peek-a-boo’ while reading. When caregivers evaluated learners’ basic parent-provider communication skills, all reported that the learners treated them with respect and used plain language.DiscussionOur curriculum extends beyond previous studies by measuring recommended books, anticipatory guidance, and communication skills using paediatric SPs and standardized patient caregivers. Curriculum activities can be tailored to best promote parent-provider literacy communication training in other programs.Electronic supplementary materialThe online version of this article (10.1007/s40037-019-0503-8) contains supplementary material, which is available to authorized users.

Parent-Provider Communication and Antibiotic Prescribing for Pediatric Ear Infections

Rising rates of antibiotic-resistant infections make reducing unnecessary antibiotic use for outpatient illness a key public health issue. This study examines the association between parent-provider communication and rates of antibiotic prescribing for their children’s ear infections. Participants (N = 70) were recruited from parents of patients (6 months–12 years) at a medical center whose children were diagnosed with ear infections or had ear symptoms with an upper respiratory tract diagnosis. Results showed that parent self-reports of going into great detail and asking many questions about their children’s symptoms were associated with greater antibiotic prescribing, as was not insisting on a particular test or treatment. Further, antibiotic prescribing was less likely when parents reported that providers encouraged them to offer opinions about the child’s medical treatment. Findings suggest that communication skills training is needed for both patients and providers to minimize potential misinterpretations and thereby avoid unnecessary antibiotic prescribing.

Building a culturally-responsive, family-driven early childhood system of care: Understanding the needs and strengths of ethnically diverse families of children with social-emotional and behavioral concerns

Families with young children who have mental health needs have unique challenges in caring for their children; these challenges are compounded for low-income, culturally- and linguistically-diverse families (some of whom may be immigrants). This study reports on findings from five multi-lingual focus groups that engaged caregivers of children (N = 65) receiving mental health services from California's Alameda County. Parents identified several challenges associated with caring for their young children including unmet basic needs, chronic stress, inadequate parent-provider communication, and organizational, community-level, and society-level factors (e.g., service fragmentation, neighborhood safety, and social injustice). These caregivers also reported numerous strengths, such as a commitment to their children's positive development, and a broader sense of community connectedness. Participants had several recommendations for how to improve the county's early childhood system of care, and emphasized a need to focus more broadly on school and neighborhood improvement to support health and wellness among young children. This study demonstrates the value of a system of care model, as its emphasis on system-wide impact is aligned with addressing challenges at the individual, family, community, organizational, and societal levels, as called for by parents.

Development and Initial Validation of the Communication About Medication by Providers-Parent Scale (CAMP-P).

This study evaluated the psychometric properties of the Communication about Medication by Providers–Parent Scale (CAMP-P), a 24-item measure of communication relevant to medication adherence between parents and medical providers. Parents of youth (ages 2-7 years) who had received a prescription within the last 12 months completed online surveys regarding demographic and appointment variables, and child’s recent prescription medications, and they completed the newly developed CAMP-P. Exploratory factor analysis of CAMP-P identified 20 items about provider communication corresponding to 3 distinct scales: medication administration strategies, encouraging communication, and addressing barriers to medication taking. Factor scales were related to appointment variables, such as length of time spent discussing medications. The CAMP-P demonstrated good internal consistency and convergent and divergent validity. The CAMP-P is a novel, validated measure of parent perceptions of medication communication and can be utilized to evaluate parent-provider communication on pediatric medication adherence in clinical and research settings.

Medical care experiences of children with autism and their parents: A scoping review.

Children with autism spectrum disorder (ASD) and their families may benefit from the provision of additional supports in health care settings, particularly when preparing for and attending medical appointments. This review examined literature that describes experiences in medical care settings from the perspective of patients under age 18 with ASD and their caregivers. A scoping review was conducted to examine the experiences of children with ASD and their families in medical care settings. Twenty-nine studies meeting inclusion criteria were identified and reviewed. The review indicated a number of challenges (e.g., parent-reported problems in parent-provider communication and overwhelming environments) as well as factors that facilitate positive experiences (e.g., providing positive reinforcement and explaining exam steps) during medical appointments. Children with ASD and their families are faced with many challenges while receiving care in medical settings. The present review identified many challenges families face, as well as facilitators of positive experiences. Understanding the unique experiences of patients with ASD and their parents will help to improve experiences in medical care settings for children, caregivers, and health care providers.