Perceptions Towards Childhood Asthma and Barriers To Its Management Among Patients, Caregivers and Healthcare Providers: A Qualitative Study From Ethiopia

Background The management of asthma, which is one of the major causes of childhood morbidity and mortality has been affected by non-adherence to recommended treatment regimens with severe consequences. The aim of the present study was therefore to explore the perceptions of the children with asthma, their caregivers and their healthcare providers towards asthma and barriers to long term childhood asthma management in an institutional setting in Addis Ababa, Ethiopia. Methods A qualitative descriptive design was followed for the present study that used individual interviews as a data collection method. The study participants were 23 pairs of children with asthma that had treatment follow ups in two tertiary hospitals and their caregivers and eight healthcare providers who cared for these children. The data was analyzed using thematic analysis approach. Results The study findings revealed that the children and their caregivers were facing physical, emotional and social burdens related with asthma and reported low adherence to their recommended treatment regimens. Factors affecting childhood asthma management were found to be limited awareness about asthma and its management and inadequate education received from healthcare professionals. Non-adherence to especially inhaled corticosteroids appears to be influenced by necessity beliefs towards chronic administration of treatment regimens and concerns related with difficulty of administration, fear of side effects and general bad attitude towards it, in addition to their low availability and affordability. Conclusions Varied perceptions about asthma and its management were reported by children with asthma and their caregivers compared to the biomedical recommendation that were related to different factors. This in turn may contribute to the low adherence of the children to their recommended regimens and suboptimal health outcomes. The findings support the need for strong asthma care and education programs that are sensitive to local and individual patients’ and family perceptions and experiences including emotional distress and of the need to institute chronic care approach.

Staying in Touch During COVID-19: Long-Term Care Facility Communication Strategies and Family Perceptions

During the COVID-19 pandemic, family concerns regarding residents in long-term care facilities (LTCFs) increased dramatically due to the higher proportion of deaths in LTCFs and an inability to visit, observe care, or easily communicate with residents. However, little is known about how these facilities communicated with families and how communications were related to family perceptions about the facility. To address these knowledge gaps, we implemented an online survey of family members or friends of residents in LTCFs from April 28 to June 19, 2020. A total of 174 responses nationwide reported the types of communications used, frequency of communication and alternative visits, and whether the families had peace of mind, would recommend the facility and whether they were considering removing the resident from the facility. We performed chi-square and t-tests to identify differences in perception among families. Results showed that respondents had more negative perspectives of a facility when they were not informed about confirmed COVID cases. There were no differences in family members’ perceptions of a facility based on the frequency of alternative visits. When respondents could communicate with their family members in an LTCF by telephone, email, mail, and window visits, they had more peace of mind. Respondents were more likely to recommend the facility to others when they were able to communicate via mail with the facility. Our findings suggest multiple communications and transparency about COVID status were most effective in keeping positive family perceptions about the facility. Our results can inform future facility communication protocols.

Family Perceptions of Newborn Cytomegalovirus Screening: A Qualitative Study

Objectives: We sought to understand long-term retrospective parental perceptions of the utility of newborn screening in a context where many affected children never develop sequelae but where intensive support services and ongoing healthcare were provided. Study design: Qualitative study. Methods: Focus groups and interviews among parents (N = 41) of children with congenital CMV who had been enrolled in a long-term follow-up study at a large medical college for a mean of 22 years following diagnosis. Groups included parents whose children were: symptomatic at birth; initially asymptomatic but later developed sensorineural hearing loss; and who remained asymptomatic into adulthood. Results: With proper follow-up support, newborn CMV screening was viewed positively by parents, who felt empowered by the knowledge, though parents often felt that they and healthcare providers needed more information on congenital CMV. Parents in all groups valued newborn CMV screening in the long term and believed it should be embedded within a comprehensive follow-up program. Conclusions: Despite initial distress, parents of CMV-positive children felt newborn CMV screening was a net positive. Mandatory or opt-out screening for conditions with variable presentations and treatment outcomes may be valuable in contexts where follow-up and care are readily available.

P.094 Referral Practices for Epilepsy Surgery in Pediatric Patients: A North American Study

Background: The International League Against Epilepsy recommends patients with drug resistant epilepsy (DRE) be referred for surgical evaluation, however prior literature suggests this is an underutilized intervention. This study captures practices of North American pediatric neurologists regarding the management of DRE and factors which may promote or limit referrals for epilepsy surgical evaluation. Methods: A REDCap survey distributed via the Child Neurology Society mailing list to pediatric neurologists practicing in North America. “R” was used to conduct data analyses. Ethics approval from the CHEO REB was granted prior to the start of data collection. Results: 102 pediatric neurologists responded, 77% of whom currently practice in the United States. 73% of respondents reported they would refer a patient for surgical consultation after two failed medications. Of all potential predictors tested in a logistic regression model, low referral volume was the only predictor of whether participants refer patients after more than three failed medications. Conclusions: Pediatric neurologists demonstrate fair knowledge of formal recommendations to refer patients for surgical evaluation after two failed medication trials. Other modifiable factors reported, especially family perceptions of epilepsy surgery, should be prioritized when developing tools to enhance effective referrals and increase utilization of epilepsy surgery in the management of pediatric DRE.

Physician Attire Influences Patient and Family Perceptions of Care in the Palliative Care Unit in Japan

Background: Physician attire influences perceptions of care. This study was conducted to evaluate the impact of physician attire on perceptions of care by patients and families in a Japanese palliative care unit. Methods: From November 2018 to February 2020, patients and family members admitted to the Palliative Care Unit at Jichi Medical University Hospital were recruited and completed a survey consisting of 4 demographic questions and 15 questions regarding perceptions of care. A 7-point Likert scale (1 = strongly agree, 4 = neutral, 7 = strongly disagree) was used to judge attire (name tag, long sleeve white coat, short sleeve white coat, scrubs, scrub color, jeans, sneakers) addressing patient and overall impact on perception of care. Results: Of 203 patients admitted, 79 were enrolled. Surveys were received from 23 patients and 52 family members. Patients and families want physicians to wear name tags (median, interquartile range) (2, 1-2) and white coats (3, 2-4). Patients want to be addressed by surnames (2, 1.5-4). Patients and family members have neutral opinions about short sleeve white coats (4, 4-4) and scrubs (4, 4-4). Jeans were not liked (4, 4-6) while sneakers are acceptable (3, 2-4). The impact of attire on perceptions of care is significantly (p = .04) greater for patients (3, 2-4) than family members (4, 3-4). Conclusion: Patients and family members prefer their physicians to wear name tags and white coats and address patients by surnames. Physician attire has a significantly greater impact on perceptions of care for patients than family members in a palliative care unit.

Determinants of Physical Activity Practices in Metropolitan Context: The Case of Lisbon Metropolitan Area, Portugal

Physical activity is an important health determinant for people’s quality of life and well-being. This study intends to (1) identify how the practice of physical activity fits into families’ daily lives; and (2) verify to what extent the practice of physical activity is influenced by the urban model, family composition, and family perceptions. A survey was applied to 410 families (corresponding to 1006 individuals) in Lisbon Metropolitan Area (LMA), Portugal, focusing on different physical activities—gym, swimming, walking/trekking/hiking, and cycling. Results are based on descriptive and bivariate data analysis and show the existence of asymmetries in the practice of physical activity in LMA. The urban context impacts the choice and frequency of physical activity practices. The typology of family and age proved to be more differentiating factors than income, being reinforced by daily lives (e.g., daily movements, transport modes, etc.). Positive self-perceptions of quality of life and health levels are also conducive to more active practices, contrary to negative perceptions of the neighborhood that are related to practices in peripheral destinations. Conclusions highlight the need for differentiated measures of physical activity promotion according to the territories and communities’ characteristics in a multilevel approach.