Telehealth Use and Access to Neurology Outpatient Clinical Services for Children: An Observational Cohort Study.

Background: Access to neurology services is important for children's well-being. We sought to evaluate the effects of telehealth on pedi-atric neurology appointment outcomes for children. Methods: Using electronic health record (EHR) data, information about children with pediatric neurology appointments in a tertiary care children's hospital in North Carolina was collected. Appointment outcomes (completion, cancellation, and no-show rates) were calculated for children who had a neurology appointment scheduled both in the pre-pandemic (March 10, 2019, to March 9, 2020) and pandemic (March 10, 2020, to March 9, 2021) periods. "Telehealth user" was a child who had at least one telehealth appointment scheduled between March 10, 2020, and March 9, 2021. In bivariate and multivariate analyses, we compared appointment outcomes for telehealth users and non-users. Limitations: EHR data were limited to a single institution and could have missed children's clinical encounters elsewhere. Since this study used secondary data that were not collected for research purposes, it is possible that there were unmeasured confounders. Because of the observational nature of the study, the association between telehealth use and appointment outcomes does not indicate causation. Results: A total of 2110 children had 11,194 pediatric neurology appointments scheduled. Telehealth users compared with non-users were more likely to be White, non-Hispanic, have private insurance, and live farther from the children's hospital. There was a statistically sig-nificant decrease in completion (66% versus 57%) and increase in cancellation (27% versus 33%) and no-show (7% versus 10%) rates in the pandemic when compared to the pre-pandemic period. In the pre-pandemic period, telehealth user and non-user groups had similar cancellation and no-show rates. In the pandemic period, there was a statistically significant decrease in cancellation and no-show rates in the telehealth user group when compared to the non-user group. Conclusions: Pediatric neurology outpatient clinic visits decreased substantially during the pandemic. Telehealth mitigated these problems. Children belonging to a minority race/ethnicity are less likely to use telehealth, increasing their risk of poor access to neurology services.

Tracheostomy decision-making for children with medical complexity: What supports and resources do caregivers need?

OBJECTIVES: Caregivers of children with medical complexity (CMC) face decisions about life-sustaining interventions, such as tracheostomy. Our objective is to describe the support needs of caregivers of CMC and the resources they use surrounding tracheostomy decision-making (TDM) for their children. METHODS: This qualitative study, conducted between 2013 and 2015, consisted of semi-structured interviews with 56 caregivers of 41 CMC who had tracheostomies, and 5 focus groups of 33 clinicians at a tertiary care children's hospital. Participants were asked about their perspectives on the TDM process. Qualitative data were transcribed, coded, and organized into themes. RESULTS: Caregivers used five domains of resources surrounding TDM: (1) social network including extended family members, friends, and clergy; (2) healthcare providers including physicians and nurses; (3) other parents of children with tracheostomy; (4) tangible materials such as print materials, videos, tracheostomy tubes, mannequins, and simulation labs; and (5) internet including websites, social media, and online health communities. Caregivers used these resources for (1) decision-making, (2) becoming knowledgeable and skillful about child's diagnosis, tracheostomy, and home care, and (3) emotional and spiritual well-being. Caregivers agreed that they received enough support, but there were gaps. Clinicians were knowledgeable about these resources, discussed social network and internet less often than the other domains, and identified gaps in supporting caregivers. SIGNIFICANCE OF RESULTS: Caregivers' need for support and use of resources surrounding tracheostomy placement for CMC extended beyond decision-making, and included becoming knowledgeable and getting emotional/spiritual support. Healthcare providers exploring these resources with caregivers could improve the quality of TDM communication.

A Framework for Pediatric Intensivists Providing Compassionate Extubation at Home.

For families facing end-of-life decisions for their critically ill children, compassionate extubation at home is a valuable service that pediatric intensivists can provide. Compassionate extubation at home is resource intensive and can be logistically challenging. Discouragingly, guidance on compassionate extubation at home in the literature is limited. We developed an evidence- and experience-based framework for compassionate extubation at home addressing common planning challenges and resource management. Our objective is to share this framework and an accompanying checklist, so that pediatric intensivists in other institutions can adapt these tools for their use, reducing barriers to providing compassionate extubation at home for critically ill children at the end of life.

Caregiver Perceptions about their Decision to Pursue Tracheostomy for Children with Medical Complexity.

OBJECTIVE: To describe the perceptions of caregivers of children with medical complexity (CMC) about their decision to pursue tracheostomy for their children, in particular the satisfaction with their decision. STUDY DESIGN: In this qualitative study conducted in western North Carolina between 2013 and 2014, we interviewed 56 caregivers of 41 CMC who had received tracheostomies in the past 5 years. Three of the CMC were deceased at the time of the interview; 8 were decannulated. In-depth interviews (35 English, 6 Spanish) were conducted, audio-recorded, and transcribed verbatim. We used ATLAS.ti software to manage data and identified themes related to caregiver perceptions about tracheostomy decision. RESULTS: We found that caregivers often chose tracheostomy because extending the lives of their children and being able to care for them at home were important. Caregivers reported the many benefits of tracheostomy including improvement in respiratory symptoms, physical and developmental health, quality of life, and means to provide medical care quickly when needed. There were negative effects of tracheostomy such as mucous plugs, excessive secretions, accidental decannulation necessitating emergency tracheostomy tube change, and the increased infection risk. Providing medical care for CMC with tracheostomy at home was difficult, but improved over time. Caregivers were generally satisfied with their decision to pursue tracheostomy for their CMC. CONCLUSIONS: Decisional satisfaction with tracheostomy for CMC is high. In counseling caregivers about tracheostomy, clinicians should present both the benefits and risks. Future studies should quantify the outcomes described in this study.

Challenges Faced by Latino Caregivers in Transportation of Children with Medical Complexity.

BACKGROUND Transportation challenges affect access to health care. Our objective was to describe transportation challenges faced by Latino children with medical complexity and identify strategies that could address these challenges.METHODS This is a qualitative study. Seventy Latino children with medical complexity who were enrolled in a complex care program of a tertiary care children's hospital were followed for a median duration of 18 months. Qualitative data were care coordination notes for each child obtained from care coordinators' encounter logs and reported experiences. Using thematic content analysis and an iterative process, we identified recurrent themes related to transportation challenges.RESULTS Caregivers of Latino children with medical complexity face many challenges transporting their children to medical appointments. These include lack of vehicle, inability to drive, lack of driver's license due to immigration status, and lack of resources to maintain a vehicle. As a result, Latino children with medical complexity often need non-emergency medical transportation, but caregivers find these systems difficult to use, in part because of language difficulties. Thus, they rely on care coordinators to access non-emergency medical transportation. Transportation problems can lead to missed medical appointments for the child and lost work for the caregiver. We identified interrelated factors that contributed to transportation issues for Latino children with medical complexity and potential strategies to address them.LIMITATIONS The extent of transportation challenges cannot be discerned because this is a qualitative study.CONCLUSIONS Transportation is difficult for Latino children with medical complexity, who rely on non-emergency medical transportation to access medical services. Care coordinators play a major role in addressing transportation problems for Latino children with medical complexity and their caregivers.

Telehealth for Children With Medical Complexity During the COVID Pandemic: A Qualitative Study Exploring Caregiver Experiences.

Children with medical complexity (CMC) receive care from many clinicians. Our objective is to describe caregivers' experiences about telehealth for CMC. This qualitative study conducted in North Carolina involves semistructured interviews with 23 caregivers of CMC (15 English; 8 Spanish). Data were analyzed using thematic content analysis. Five themes were identified: (1) telehealth allayed caregivers' fears about their children's exposure to COVID-19 and mitigated the challenges with in-person visits during the pandemic. (2) Telehealth reduced the logistical challenges of in-person visits for CMC, enabled providers to see children in their home environment, and prevented appointment cancelations. (3) System inaccessibility, technical problems, and providers' inability to deliver telehealth were challenges. (4) Inadequate evaluation of the child and caregiver-provider communication were limitations. (5) Caregivers were satisfied with telehealth, found variability in telehealth offering, and wished telehealth continued to remain an option. Telehealth is a viable option for outpatient care delivery for CMC.

Home Health Nursing Agencies' Services for Children With Medical Complexity: Parent and Nurse Perspectives.

OBJECTIVE: Many children with medical complexity (CMC) require the services of home health nurses (HHNs). Home health agencies (HHAs) hire, train, and manage nurses. For children to flourish, families, nurses, and HHAs must establish successful working relationships. Our objective was to understand the perspectives of parents and nurses about HHAs. METHODS: In Illinois (IL) from 2019 to 2022, HHNs for and parents of children with invasive mechanical ventilation were interviewed. In North Carolina (NC) from 2012 to 2013, parents of CMC were interviewed, and from 2013 to 2014 HHNs participated in focus groups. Each dataset was initially analyzed separately for main themes relating to HHAs. Using collaborative thematic analysis, we determined themes common across datasets. RESULTS: In IL, 23 mothers, 12 fathers, and 20 nurses were interviewed. In NC, 19 mothers, 6 fathers, and 1 grandmother were interviewed; and 4 focus groups of 18 nurses were conducted. Four common themes were identified. 1) HHAs do not have a uniform process for hiring and assigning nurses to cases. 2) HHAs have marked variability in training offered to nurses. 3) Shift scheduling, notifications, and communications with the HHAs frustrate parents and nurses. 4) Nurses and parents have little allegiance to specific HHAs; they frequently change agencies or work with several simultaneously. CONCLUSIONS: Parents and nurses perceive practices for hiring, training, and staffing as inconsistent, and experience communication challenges. HHA-level problems may contribute to issues with HHN retention and complicate the lives of the families of CMC. Further research about this critical health care sector is needed.

Factors associated with collaboration among agencies serving children with complex chronic conditions.

Our objective was to identify agency-level factors that increase collaborative relationships between agencies that serve children with complex chronic conditions (CCC). We hypothesized that an agency will collaborate with more partners in the network if the agency had a coordinator and participated in a community coalition. We surveyed representatives of 63 agencies that serve children with CCC in Forsyth County, North Carolina about their agencies' collaborations with other agencies. We used social network analytical methods and exponential random graph analysis to identify factors associated with collaboration among agencies. The unit of analysis was the collaborative tie (n = 3,658) between agencies in the network. Agencies participating in a community coalition were 1.5 times more likely to report collaboration than agencies that did not participate in a coalition. Presence of a coordinator in an agency was not associated with the number of collaborative relationships. Agencies in existence for a longer duration (≥11 vs. ≤10 years; adjusted odds ratio (aOR): 2.1) and those with a higher proportion of CCC clientele (aOR: 2.1 and 1.6 for 11-30 % and ≥31 % compared to ≤10 %) had greater collaboration. Care coordination agencies and pediatric practices reported more collaborative relationships than subspecialty clinics, home-health agencies, durable medical equipment companies, educational programs and family-support services. Collaborative relationships between agencies that serve children with CCC are increased by coalition participation, longer existence and higher CCC clientele. Future studies should evaluate whether interventions to improve collaborations among agencies will improve clinical outcomes of children with CCC.

Audio or Video? Access to Pediatric Neurology Outpatient Services Varies by the Type of Telehealth, Especially for Black Children.

BACKGROUND: Children of minority race/ethnicity face barriers to accessing specialty services. During the COVID pandemic, health insurance companies reimbursed telehealth services. Our objective was to evaluate the effect of audio versus video visits on children's access to outpatient neurology services, particularly for Black children. METHODS: Using Electronic Health Record data, we collected information about children who had outpatient neurology appointments in a tertiary care children's hospital in North Carolina from March 10, 2020, to March 9, 2021. We used multivariable models to compare appointment outcomes (canceled vs completed, and missed vs completed) by visit type. We then conducted similar evaluation for the subgroup of Black children. RESULTS: A total of 1250 children accounted for 3829 scheduled appointments. Audio users were more likely to be Black and Hispanic, and to have public health insurance than video users. Adjusted odds ratio (aOR) for appointments completed versus canceled was 10 for audio and 6 for video, compared to in-person appointments. Audio visits were twice as likely as in-person visits to be completed versus missed; video visits were not different. For the subgroup of Black children, aOR for appointments completed versus canceled for audio was 9 and video was 5, compared to in-person appointments. For Black children, audio visits were 3 times as likely as in-person visits to be completed versus missed; video visits were not different. CONCLUSIONS: Audio visits improved access to pediatric neurology services, especially for Black children. Reversal of policies to reimburse audio visits could deepen the socioeconomic divide for children's access to neurology services.

Communication Challenges Faced by Spanish-Speaking Caregivers of Children with Medical Complexity: a Qualitative Study.

BACKGROUND: Communication between caregivers and healthcare providers is important in the delivery of high-quality healthcare for children with medical complexity (CMC). Hispanic children face many challenges in access to healthcare services. Our objective was to describe the communication challenges faced by Spanish-speaking parents with limited English proficiency (SSP-LEP). METHODS: This was a qualitative study of 70 children of Spanish-speaking caregivers, enrolled in a complex care program of a tertiary care children's hospital in North Carolina. Secondary source data were abstracted logs of care coordination tasks maintained by the program's two bilingual care coordinators for a median observation period of 45 months, and complemented by data from care coordinator interviews. Data were entered and coded in ATLAS.ti. Using thematic content analysis and an iterative process, we identified recurrent themes related to communication challenges of Spanish-speaking caregivers. RESULTS: Median age of children was 5 years; 51% were girls; 97% had Medicaid; and 3% were uninsured. Seven children died during the observation period. Three major themes were identified as follows: (1) caregivers faced many communication challenges primarily because of language barrier. (2) Multiple factors at caregiver, provider, and system levels, in addition to language barrier, contributed to communication challenges. (3) Communication challenges had serious consequences for CMC. These consequences were lessened by bilingual coordinators. CONCLUSION: SSP-LEP face unique communication challenges resulting in negative impact on the healthcare of their CMC. Bilingual coordinators can help improve communication between SSP-LEP and their healthcare providers. Interventions to address communication challenges of Spanish-speaking caregivers are warranted.

Collaborative decision-making: A framework for decision-making about life-sustaining treatments in children with medical complexity.

OBJECTIVE: Caregivers of children with medical complexity (CMC) face decisions about life-sustaining treatments (LST) like tracheostomy. We sought to develop a clinically relevant and realistic model for decision-making about tracheostomy placement that might apply to other LST in CMC. DESIGN: This qualitative study, conducted between 2013 and 2015, consisted of 41 interviews with 56 caregivers of CMC who had received tracheostomies and 5 focus groups of 33 healthcare providers (HCPs) at a tertiary-care children's hospital in North Carolina. Participants were asked about their perspectives on the tracheostomy decision-making process. Data were transcribed, and coded. Using thematic content analysis, we inductively developed a tracheostomy decision-making framework and process. RESULTS: Many factors influenced caregivers' decisions, including children's well-being and caregivers' values, faith, knowledge, experience, emotional state, and social factors; preserving the child's life was the most important. HCPs consider many clinical and nonclinical factors; recommending tracheostomy for children with limited survival, perceived poor functioning and quality of life, and progressive conditions is ethically difficult. The framework of tracheostomy decision-making has inter-related caregiver- and HCP-level factors that influence the process. The framework contains elements not captured in a shared decision-making model, but better fits a collaborative decision-making (CDM) model. The tracheostomy CDM process that emerged from the data has two nonsequential components that HCPs could use: (1) gaining understanding and (2) holding decision-making conversations. CONCLUSIONS: CDM could be a useful model for clinicians guiding families about tracheostomy for CMC. The applicability of CDM for decision-making about other LSTs needs further exploration.

The role of religion and spirituality in caregiver decision-making about tracheostomy for children with medical complexity.

Children with medical complexity (CMC) receive life-sustaining treatments such as tracheostomy. The objective of this paper is to explore the roles of religion and spirituality (R&S) of caregivers of children with medical complexity (CMC) in their decision to pursue tracheostomy for their children. We conducted 41 in-depth interviews of caregivers of CMC who had received tracheostomies in the prior 5 years. Four themes emerged: (1) Caregivers believed R&S to be powerful for their children's healing, and helped them cope with their children's illnesses; (2) Spirituality was an important factor for caregivers in the decision to pursue tracheostomy for their children; (3) Many caregivers did not discuss their spirituality with clinicians for a variety of reasons; (4) Clergy and hospital chaplains played a major supportive role overall; however, they did not play a significant role in the decision-making process. Our study shows the importance of R&S, and the roles of clergy and chaplains in pediatric tracheostomy decision-making.

Do children with developmental disabilities and mental health conditions have greater difficulty using health services than children with physical disorders?

The objective of this study is to determine whether achievement of the Maternal and Child Health Bureau core outcome ease of use of health services differs between children with developmental disabilities, mental health conditions and physical disorders. We analyzed data from the 2005 National Survey of Children with Special Health Care Needs. Children with special health care needs were classified into 4 health condition groups: developmental disabilities (DD), mental health conditions (MH), physical disorders (PD) and multiple conditions. The outcome measure was 'difficulty using services'. We conducted bivariate and multivariate analyses to determine the associations between the health condition groups and the outcome. Of the CSHCN included in the study, 2.6% had DD, 12.9% had MH, 49.9% had PD and 34.6% belonged to multiple conditions group. Four percent of CSHCN with PD, 17% of those with DD, 13% of those with MH and 20% of those in the multiple conditions group had difficulty using services. In multivariate analyses, CSHCN with DD had 2.3 times and MH conditions had 2.6 times the odds of having difficulty using services compared to those with PD. Existing programs for CSHCN should be evaluated for the adequacy of services provided to children with DD and MH. Future studies should evaluate how developmental disabilities and mental health policies affect navigating the health care system for this population.

Transitioning Children With Medical Complexity From Hospital to Home Health Care: Implications for Hospital-Based Clinicians.

OBJECTIVES: There is limited research about best practices for transitioning children with medical complexity (CMC) from hospital to home. Our objectives were to describe issues related to transitioning CMC from hospital to home health care and identify strategies to improve this transition. METHODS: This qualitative study was conducted in western North Carolina between 2012 and 2014 and involved a focus group of 14 hospital- and community-based stakeholders and 4 focus groups of 18 home health nurses. Focus groups were audio-recorded and transcribed verbatim, and transcriptions were managed in ATLAS.ti software. By using content analysis, recurrent themes related to transitioning CMC from hospital to home were identified. RESULTS: Themes in 4 domains emerged. (1) Home health orders: home health care providers desired hospital-based providers to write accurate and specific orders, notify them in advance about discharge to order specialized supplies, and avoid changing orders at the last minute. (2) Communication: participants found discharge summaries useful but did not always receive them. Communication between hospital-based clinicians, home health care providers, and the child's primary care physician about the hospitalization and home care was important. (3) Resources: home health care providers needed hospital-based clinicians to be a resource during the early period of transition home. (4) Caregiver preparation: participants emphasized caregiver preparation about medical care of CMC, home health nursing, and the differences between hospital and home care practices in the care of CMC. CONCLUSIONS: There are gaps in the system of transitional care of CMC. Potential strategies to improve transitional care of CMC between the hospital and home health care services exist.

Practical Needs in the Home Care of Latino Children With Medical Complexity.

Latino children face barriers to high-quality healthcare. Because children with medical complexity (CMC) have higher healthcare needs, Latino CMC are likely to experience greater effects of these barriers. These vulnerabilities are exacerbated when Latino CMC endure adverse social conditions, such as food insecurity and housing instability. The study objective was to describe the challenges faced by caregivers of Latino CMC in meeting the practical needs of their children when caring for them at home. In this qualitative study, 70 Latino CMC enrolled in a complex care program of a tertiary care children's hospital were followed for a median duration of 45 months. We collected care coordination notes from encounter logs and interviewed bilingual care coordinators regarding their experiences with each child. Using thematic content analysis and an iterative process, we identified recurrent themes related to practical needs. Four themes emerged. Caregivers: 1) faced financial challenges due to many reasons that were exacerbated by children's medical conditions; 2) had challenges meeting basic needs of their families, including food and shelter; 3) experienced difficulties obtaining necessary medical supplies for their children; and 4) relied on care coordinators to navigate the system. We conclude that Latino caregivers of CMC experience many challenges meeting their families' basic needs and obtaining necessary medical supplies to care for their CMC at home. Care coordinators play a major role in addressing the practical needs of Latino CMC. Future studies should determine whether addressing the practical needs of Latino CMC would improve their health outcomes.

Decision-Making About Tracheostomy for Children With Medical Complexity: Caregiver and Health Care Provider Perspectives.

OBJECTIVE: Caregivers of children with medical complexity (CMC) face decisions about tracheostomy. The objectives of this paper are to identify facilitators and barriers to tracheostomy decision-making (TDM) process for CMC. METHODS: Using phenomenology as its methodologic orientation, this qualitative study conducted in North Carolina between 2013 and 2015 consists of semistructured interviews with 56 caregivers of 41 CMC who received tracheostomies, and 5 focus groups of 33 health care providers (HCP) at a tertiary care children's hospital involved in TDM for CMC. Participants were asked to share their experiences and perspectives on the TDM process. Qualitative data were transcribed, coded, and organized into themes as is consistent with thematic content analysis. RESULTS: Five themes were identified. 1) Caregivers perceived decision about tracheostomy for their children was theirs to make. 2) Strategies that increased caregivers' active participation in the TDM process facilitated the TDM process. 3) Caregiver emotional stress and lack of understanding about tracheostomy were barriers. 4) Good HCP communication during the TDM process was valued; poor communication was a barrier. 5) Collaboration among HCP-facilitated TDM, especially when nurses were involved, whereas fragmentation in care was a barrier. CONCLUSIONS: Caregivers take a primary role in the TDM process. Many caregiver and HCP-level facilitators and barriers for TDM exist. Augmenting the facilitators and reducing the barriers identified in this study could improve the TDM process for CMC.

Randomized controlled trial evaluating a collaborative model of care for transitioning children with medical complexity from hospital to home healthcare: Study protocol.

This article describes the study protocol for an evaluation of an innovative model of care that supports home health nurses (HHN) who serve children with medical complexity (CMC). CMC constitute a small proportion of children, but have very high need for health services, are hospitalized frequently, and account for significant proportion of pediatric healthcare expenditures. High-quality home health nursing services are important for CMC, but models of care of home healthcare, after discharge of CMC from the hospital, have not been tested. Our project aims are to develop, implement, and test a model of care, called ICollab, to improve home healthcare delivery for CMC. The ICollab model consists of collaboration between HHN, primary-care physicians and clinicians of the complex care program of a tertiary-care children's hospital in the care of CMC. In this randomized clinical trial, we will recruit 110 CMC discharged home on home health nursing services. The intervention group (n = 55) will receive the ICollab intervention for 6 months post-discharge from the hospital, in addition to usual care. Children in the control group (n = 55) will receive only usual care. Outcome measures will include healthcare utilization metrics (hospitalization rates, emergency room visit rates, and days to readmission), caregiver burden and caregiver satisfaction with home healthcare, HHN retention, and HHN collaboration with other healthcare providers. We hypothesize that ICollab will reduce healthcare utilization and caregiver burden, and improve caregiver satisfaction with home healthcare, increase HHN retention, and increase HHN collaboration with other healthcare providers. Results of this study have the potential to provide a critically needed evidence-base for interventions to improve the quality of healthcare delivery for CMC. This study is registered on clinicaltrials.gov (NCT03978468) and is ongoing.

Expanding the phenotypic and molecular spectrum of RNA polymerase III-related leukodystrophy.

OBJECTIVE: To expand the phenotypic spectrum of severity of POLR3-related leukodystrophy and identify genotype-phenotype correlations through study of patients with extremely severe phenotypes. METHODS: We performed an international cross-sectional study on patients with genetically proven POLR3-related leukodystrophy and atypical phenotypes to identify 6 children, 3 males and 3 females, with an extremely severe phenotype compared with that typically reported. Clinical, radiologic, and molecular features were evaluated for all patients, and functional and neuropathologic studies were performed on 1 patient. RESULTS: Each patient presented between 1 and 3 months of age with failure to thrive, severe dysphagia, and developmental delay. Four of the 6 children died before age 3 years. MRI of all patients revealed a novel pattern with atypical characteristics, including progressive basal ganglia and thalami abnormalities. Neuropathologic studies revealed patchy areas of decreased myelin in the cerebral hemispheres, cerebellum, brainstem, and spinal cord, with astrocytic gliosis in the white matter and microglial activation. Cellular vacuolization was observed in the thalamus and basal ganglia, and neuronal loss was evident in the putamen and caudate. Genotypic similarities were also present between all 6 patients, with one allele containing a POLR3A variant causing a premature stop codon and the other containing a specific intronic splicing variant (c.1771-7C>G), which produces 2 aberrant transcripts along with some wild-type transcript. CONCLUSIONS: We describe genotype-phenotype correlations at the extreme end of severity of the POLR3-related leukodystrophy spectrum and shed light on the complex disease pathophysiology.

How do parents of children with juvenile idiopathic arthritis (JIA) perceive their therapies?

BACKGROUND: Complementary and alternative medical (CAM) therapies are commonly used by pediatric patients with chronic medical conditions. Little is known about parents' perceptions of these therapies. This study describes the views of parents of patients with juvenile idiopathic arthritis (JIA) regarding conventional and CAM therapies. METHODS: Parents of children with JIA seen at a pediatric rheumatology clinic were surveyed between June 1 and July 31, 2007. Questionnaires asked about patients' use of over 75 therapies in the past 30 days, their perceived helpfulness (0 = not helpful; 3 = very helpful), perceived side effects (0 = none; 3 = severe), and whether each therapy would be recommended to other patients with JIA (Yes, No, Not sure). RESULTS: Questionnaires were returned by 52/76 (68%) parents; patients' average age was 10.9 years and 87% were Caucasian. Medications were used by 45 (88%) patients; heat (67%) and extra rest (54%) were also commonly used. CAM therapies were used by 48 (92%), e.g., massage (54%), vitamins and other supplements (54%), avoiding foods that worsened pain (35%) and stress management techniques (33%). Among the therapies rated by 3 or more parents, those that scored 2.5 or higher on helpfulness were: biologic medications, methotrexate, naproxen, wheelchairs, orthotics, heat, vitamins C and D, music, support groups and prayer. CAM therapies had 0 median side effects and parents would recommend many of them to other families. CONCLUSION: JIA patients use diverse therapies. Parents report that many CAM therapies are helpful and would recommend them to other parents. These data can be used in counseling patients and guiding future research.

Establishing Relationships and Navigating Boundaries When Caring for Children With Medical Complexity at Home.

Children with medical complexity receive care from many healthcare providers including home healthcare nurses. The objective of our study, based on a conceptual framework, was to describe the relationships between parents/caregivers of children with medical complexity and home healthcare nurses caring for these children. We collected qualitative data in 20 semistructured in-depth interviews (15 English, 5 Spanish) with 26 primary caregivers of children with medical complexity, and 4 focus groups of 18 home healthcare nurses inquiring about their experiences about home healthcare nursing services for children with medical complexity. During an iterative analysis process, we identified recurrent themes related to caregiver-nurse relationships. Our study showed that: (1) caregiver-nurse relationships evolved over time and were determined by multiple factors; (2) communication and trust were essential to the establishment of caregiver-nurse relationships; (3) both caregivers and nurses described difficulties of navigating physical, professional, personal, and emotional boundaries, and identified strategies to maintain these boundaries; and (4) good caregiver-nurse relationships helped in the care of children with medical complexity, reduced caregiver burden, resulted in less stress for nurses, and was a factor in nurse retention. We conclude that trusted relationships between caregivers and nurses are important to the home care of children with medical complexity. Interventions to develop and maintain good caregiver-nurse relationships are necessary.