Translational research – Universal parenting challenges and coping with change

Parenting challenges are universal with a worldwide scope. The COVID-19 pandemic created additional stress and challenges for parents worldwide, requiring healthcare systems to respond with innovative methods that transformed healthcare delivery. As a result, the use of teleheath and remote patient monitoring relieved parenting stress and enabled parents to receive ongoing care for their children and adolescents with chronic conditions. Family and dyadic support for parents facilitates their coping and adaptation to the stress associated with their child's chronic health conditions. As parents are challenged to provide care for their children with limited resources, some parents seek routine pediatric care through the inappropriate use of emergency departments. Hospitalization compounds parental stress as they cope with their child's chronic pain, surgery, and the transition from hospital to home. Moreover, healthcare transitions from pediatric to adult healthcare create additional stress for parents of children with chronic conditions, as their child grows into adolescence and focuses on becoming independent in self-care.

The challenges of parenting are magnified when parents lack resources and support, have poor health literacy, and difficulty coping with children's acute and chronic health conditions (Christian, 2021). Cross-cultural adaptation of English language instruments provides new methods of measuring parenting challenges worldwide. In this way, the universal challenges of parenting may be addressed in a more comprehensive manner to develop intervention strategies that facilitate adaptation. Pediatric nurses intervene with parents to teach them additional strategies for managing their children's health care needs while assisting parents to adapt to the challenges associated with the transition from hospital to home, as well as healthcare transitions from pediatric to adult care.

Research focused on parenting generates new knowledge about parent perspectives about their child's health, as well as provides a better understanding of parents' coping ability. With this new knowledge, pediatric nursing interventions may be designed to meet the challenges of parenting across cultures, while improving the health outcomes of children worldwide. In this way, evidence generated from nursing research is translated into practice to improve the quality of nursing care (Hockenberry et al., 2019; Melnyk & Fineout-Overholt, 2023; Polit & Beck, 2021). It is imperative that new knowledge and evidence is translated into pediatric nursing practice to improve health outcomes for children and families (Christian, 2011, Christian, 2013, Christian, 2017, Christian, 2021). Research focused on the universal challenges of parenting is essential to improving the lives of children and their families worldwide.In this way, translation of research into pediatric nursing practice enhances the ability of parents to cope with and adapt to the complex and challenging issues with respect to children's health.

In this issue of the Journal of Pediatric Nursing, 16 articles describe research, evidence-based practice, and quality improvement projects focused on the challenges of parenting in promoting children's health worldwide, as follows:

• •A sub-sample of parents (n  = 963) from a U.S. national, online anonymous cross-sectional survey of parents enrolled in a larger study focused on HPV knowledge (N  = 4000) explored factors influencing parents' attitudes and intentions to seek information about vaccinating their children (ages 0–18 years) for COVID-19 (Cousin et al., 2023). The one-month survey was conducted in March–April 2021. Parents who completed the survey were predominantly female (59%), and married (84%), well-educated (24.6% graduate school, 32.7% bachelor's degree, 27.2% completed some college), employed (84.7%), and insured (88%), Parents' race/ethnicity was classified as White (82.3%), Black (7.4%), or Other (10.3%), with 12.3% Hispanic. Results indicate that 52.6% of participants reported that they would seek more information about the COVID-19 vaccine when available for children. Logistic regression analyses predicted factors associated with parents having a greater intention of having their children vaccinated for COVID-19 included being male, better educated, with more positive attitudes about vaccines, a greater preference for vaccine information in a language other than English, higher incomes, health insurance, health literacy, and health numeracy. Thus, the implications of the findings highlight the role of pediatric nurses in providing education and vaccine information to parents to improve attitudes about the COVID-19 vaccine for children.
• •Parents' perceptions of the use of telemedicine during the COVID-19 pandemic for children and adolescents with rheumatology disorders in Tunisia were explored (Makhlouf et al., 2023). A cross-sectional study was conducted during 2021 using structured telephone interviews with parents (N  = 40) to determine their preferences with respect to telemedicine. The majority of children were diagnosed with juvenile idiopathic arthritis (80%). Results indicated that while only 22.5% of parents were aware of telemedicine, 32.5% of these parents would accept the use of telemedicine for care. The preferred method of telemedicine by parents was video calls (82.5%) as compared to phone calls (17.5%). Parents' preferences for preferring telemedicine included avoiding hospitals during the pandemic (32.5%), avoiding school absences (27.5%), time saving (27.5%), and cost saving (25%). The primary barriers to the use of telemedicine identified by parents were the discrepancy between physical and distant evaluation (47.5%) and fear of trivialization of disease (38.5%). Thus, the results of this study demonstrated a low prevalence of parents preferring telemedicine for care of their children and adolescents with rheumatology disorders in Tunisia, as well as a lack of understanding and education about telemedicine.
• •An innovative, multi-specialty pediatric remote patient monitoring (RPM) or telehealth quality improvement program was created in 2017 with 5 RPMs and implemented on a larger scale during the COVID-19 pandemic expanding to 18 active RPMs across 10 pediatric specialties for children with chronic conditions at a large academic children's hospital (Denker et al., 2023). A centralized nursing team approach has been used to manage care for 1229 pediatric patients enrolled in RPMs, monitoring an average of 300 patients per month. Two nurses manage the RPM patient portal (e.g., alerts, text messages, on-demand video requests) on a daily basis, while the third nurse manages patient education enrollment, and data reporting. The RPM nurses triage all patient and parent/caregiver communications. Outcomes of the pediatric remote patient monitoring program evidenced 91% enrollment rate, with high patient/parent satisfaction (89–98%), rating their overall experience as 9 out of 10 (high). Adherence to RPM and family engagement over time was 68%. Thus, the pediatric telehealth QI program has been successful in decreasing time away from home and improving access to care for children with chronic conditions and their parents/caregivers.
• •A secondary analysis of data from the REACH telehealth home monitoring multi-site randomized clinical trial designed to explore the relationships between parenting stress and post-traumatic stress in infants with congenital heart disease (CHD) and the moderating role of parents' dyadic adjustment (Lisanti et al., 2023). The telehealth intervention was conducted to reduce stress among parents of infants with CHD at 4-months after discharge from the hospital. Parents (n  = 136) who participated in the study were characterized as female (96.3%), predominantly White (84.6%) with non-Hispanic ethnicity (93%), having graduated from college (67.8%) with private health insurance (73.5%). Results demonstrated that at 4-months follow-up post-hospital discharge, parents of infants in the “Never recovered” (OR = 4.8, CI = 1.3–18.0) and “Partially recovered” (OR = 2.5, CI = 1.0–5.9) growth trajectories had 4.8 to 2.5 times greater odds of experiencing parental stress as compared to parents of infants with stable growth trajectories. Moreover, parents of “Never recovered” (OR = 3.9, CI = 1.6–9.9) infants were 4 times more likely to have moderate to severe symptoms of post-traumatic stress despite high dyadic adjustment. Parents of the “Partially recovered” infants with low dyadic adjustment had 3 to 5 times greater odds of experiencing high stress on all PSI domains. In contrast, parents with high dyadic adjustment did not have increased stress relative to poor infant growth trajectory; thus, parental dyadic adjustment moderated the relationships with parental stress. Thus, the results support that infant growth trajectory at 4-months post-hospital discharge is associated with parenting stress and post-traumatic stress although the higher quality of partner dyadic adjustment serves to moderate these associations.
• •A phenomenological study of mothers of premature infants in Turkey was employed to explore how mothers experience prematurity (Taştekin & Bayhan, 2023). Turkish mothers (N  = 9) were interviewed retrospectively via telephone due to the COVID-19 pandemic to explore their experiences with prematurity from the mothers' hospitalization for birth, infant hospitalization in the Neonatal Intensive Care Unit (NICU), after infant's discharge from the hospital, through early childhood. Thematic analysis of interview data employed qualitative research software (MAXQDA). Turkish mothers ranged in age from 41 to 29 years with infants born between 25 and 32 weeks gestation. Results of the analyses identified an overarching metaphor, Living with a birthmark, that described the longitudinal effects of prematurity. Four themes described these mothers' experiences associated with prematurity, including: (a) incomplete mother; (b) facing prematurity, uncertainty, natural touch barrier, facing reductive social response, and NICU friendship; (c) being on the alert, a period of complete closure, and fighting with the reductive social response; and (d) association to prematurity and (cannot) overcome the difficulties. Thus, the longitudinal effects of prematurity for Turkish mothers were extremely traumatic with the birthmark becoming part of the mother-baby relationship.
• •To create a Chinese version of the Child Food Neophobia Scale (CFNS), the scale was translated from English to Chinese to determine the reliability and validity for use with parents of preschool children (ages 3 to 6 years) in China (Luo et al., 2023). The Child Food Neophobia Scale (CFNS) was developed to assess children's willingness to taste new foods. The CFNS was translated, back-translated, and cross-culturally adapted to create the Chinese version of the scale. The 9-item CFNS was administered to parents (N  = 575) of Chinese preschool children enrolled in two kindergarten classes to assess the reliability and validity of the translated version of the CFNS. Content validity was evaluated by six experts resulting in an Item-Content Validity Index (I-CVI) ranging from 0.833 to 1.00 with the average Scale-Content Validity Index (S-CVI) of 0.983. Results of exploratory factor analysis (EFA) demonstrated a 2-factor model explaining 49.43% of the variance and the 2-factor model was supported through confirmatory factor analysis (CFA). Reliability of the CFNS was acceptable with Cronbach's alpha of 0.759 for the scale and Cronbach's alpha for the two factors at 0.735 and 0.713, split-half reliability 0.788, and test-retest reliability of 0.756. Thus, the Chinese version of the CFNS was found to have acceptable validity and reliability for use with parents of preschool children in China.
• •A retrospective analysis of the qualitative component (three open-ended questions) of a larger survey was conducted at a pediatric pain and pain psychology clinic to explore parental experiences related to pediatric and adolescent chronic non-cancer pain (Cole et al., 2023). Of the parents (N  = 288) who participated in the survey, 84% of parents (n  = 243) with children between 3 and 20 years of age responded to at least one of the qualitative questions. Parent participants were predominantly female (92.7%), with race/ethnicity as follows: White (72.5%), Latino (16.7%), Black (8.9%), Middle Eastern (1.4%), and Asian (<1%). Thematic analysis of parenting experiences associated with children and adolescents with chronic pain was conducted. Five themes described parents' functioning and parenting experiences of a child with chronic pain: (a) Pain Central: The Hub; (b) Juggling Life; (c) Suffering Side by Side; (d) Unrealized Dreams; and (e) Getting’ it Under Control. Thus, these themes highlighted the impact of the child's chronic pain on the parents' functioning in their everyday lives.
• •A methodological, descriptive cross-sectional study was employed to examine the psychometric properties of pediatric-modified total neuropathy score (Ped-mTNS) in Turkish children with cancer (Özdemir et al., 2023). Pediatric hematology and oncology patients (ages 5–18 years) receiving outpatient chemotherapy of Vincristine or Cisplatin participated in the study. The Ped-mTNS was translated from English, back-translated, and cross-culturally adapted to establish content validity of the Turkish version of the scale. Pediatric participants with cancer (n  = 40) were age-and gender matched with healthy children (n  = 40, control group). Inter-rater reliability for item and total Ped-mTNS scores was acceptable (ICC > 0.95). Reliability of the Ped-mTNS scale was acceptable (Cronbach's alpha of 0.709). Item-total correlations for items ranged from 0.260 to 0.658. The mean score of children with cancer was 4.4 ± 3.8 (SD). Significant associations were noted for total scale scores of children with cancer post-chemotherapy through the evaluation of sensory neuropathy (r  = 0.574, p  < 0.001), and motor neuropathy (r  = 0.465, p  < 0.001). Thus, the Ped-mTNS scale was found to be a valid and reliable instrument for evaluation of chemotherapy-induced peripheral neuropathy in Turkish children and adolescents with cancer post-chemotherapy.
• •A cross-sectional survey of Chinese parents (N  = 380) of children with cancer was conducted at four pediatric oncology departments to validate the Chinese version of the Shirom-Melamed Burnout Questionnaire (SMBQ) (Liao et al., 2023). Forward and backward translation of the SMBQ into Chinese was performed and pilot tested with parents (n  = 30), while cultural relevance was evaluated by five bilingual nurses with 100% agreement for language consistency. The psychometric evaluation of the Chinese version of the SMBQ demonstrated acceptable content validity (item CVI > 0.78; total CVI > 0.90). Convergent validity, discriminant validity, and criterion-related validity were established. Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) of the Chinese version of the SMBQ yielded a five-factor structure (21-items). Internal consistency reliability was acceptable (Cronbach's alpha = 0.936 total scale, ranging from 0.941 to 0.758 for the five factors). The Gutman split-half reliability coefficient (0.838) and test-retest reliability (ICC = 0.767, p  < 0.001) were found to be acceptable. Results of the survey indicated that parents of children with cancer demonstrated a high level of burnout in China. Thus, the Chinese version of the SMBQ was determined to be valid and reliable for measuring burnout parents of children with cancer in China.
• •A qualitative, ethnonursing study was conducted to determine the cultural care needs of Spanish-speaking parents with limited English proficiency of hospitalized children and to understand the role of nurses in providing culturally congruent care in the U.S. (Stephen et al., 2023). Leininger's theory of culture care diversity and universality guided the study. Interviews were conducted with Spanish-speaking parents (N  = 11; 10 mothers, 1 father) of Mexican origin with limited English proficiency in-person or via Zoom. Parents ranged in age from 25 to 45 years. The majority of parents were married (n  = 8) and worked in the home (n  = 9). Parents' education level varied, ranging from middle school to bachelor's and graduate degrees. Hospitalized children ranged in age from newborn to 8 years of age. Interviews were analyzed using Leininger's phases of qualitative analysis, with three themes that informed parents' cultural care needs: (a) Role of mother as an ever-present manager of care for hospitalized child and family; (b) Parents' difficult, fearful, stressful, and unknowing experiences in the presence of a language barrier; and (c) Expected nursing care that was kind, respectful, compassionate, and attentive. Results of this study suggest that communication in Spanish is essential for meeting the cultural care needs of Spanish-speaking parents with limited English proficiency to improve parental understanding when their child is hospitalized in the U.S.
• •A qualitative study was employed with healthcare professionals in Denmark to explore the challenges of maintaining confidentiality in pediatric healthcare settings (Eg & Jensen, 2023). Two focus groups were conducted with healthcare professionals (group 1–2 physicians, 8 nurses; group 2–5 nurses) from pediatric emergency, in-patient pediatric departments, neonatal units, and outpatient clinics located at two regional hospitals in Denmark. Results indicate that nurses and physicians struggle to maintain pediatric patient confidentiality when sharing sensitive information quickly. Three themes were identified: (a) Time pressure and physical surroundings in the clinical setting; (b) Communication challenges (where and with whom); and (c) Navigation in the clinical setting to uphold privacy. Thus, the challenges associated with maintaining pediatric patient confidentiality were related to privacy, dignity, and communicating with children and their parents.
• •An evidence-based practice (EBP) project describing the process of de-adoption of low-value care with little or no benefit to pediatric patients was demonstrated through a case study to determine the efficacy of antihistamines in decreasing infusion reactions of infliximab for treatment of pediatric patients with severe Crohn's disease or ulcerative colitis (Fournier et al., 2023). The process of identifying low-value clinical practices requires a systematic approach to evaluating evidence of ineffective care practices to prevent potential harm, waste of healthcare resources, and promote cost-savings. The case study illustrates the EBP process of evaluating a low-value clinical practice guided by the Synthesis Model for the Process of De-adoption. The six steps of the cyclical process include: (a) assessing current use of low-value care; (b) adapting knowledge to local context; (c) assessing barriers and facilitators to de-adoption; (d) tailoring and implementing a de-adoption intervention; (e) evaluation of the de-adoption process and outcomes; and (f) sustaining de-adoption. This de-adoption process is an essential missing link in evaluating evidence-based practices to promote the quality pediatric nursing practice.
• •A systematic review using PRISMA guidelines was conducted to explore inappropriate use of pediatric emergency departments (Montoro-Pérez et al., 2023). A search of electronic databases for literature published in the last five years (January 2017 to August 2022) was conducted using MEDLINE, Web of Science, and Science Direct, as well as the grey literature retrieved from Google Scholar and Open Grey. The search yielded a total of 3572 articles with 33 articles remaining after duplicates and articles that did not meet the inclusion criteria were removed. The final review included 15 articles with 5 additional articles added for a total of 20 articles for the analysis. Inappropriate use of pediatric emergency departments was related to the following factors: younger age of children, Black parents/caregivers, lower socioeconomic status, lower levels of parental education, perceived urgency of care, parental emotions with respect to child's condition, parental psychological distress, ineffective parental role, advantages of pediatric emergency department, and health insurance. These results highlight the importance of parenting support and basic childcare with respect to inappropriate use of pediatric emergency departments worldwide.
• •A scoping review was conducted in accordance with PRISMA guidelines to explore the concept of hope among adolescents (ages 10–19 years) in the context of pediatric nursing care (Paramos et al., 2023). A search of multiple electronic databases was conducted using Joanna Briggs Institute methodology to obtain relevant peer-reviewed literature published in Portuguese or English. Databases searched included MEDLINE, CINAHL, Nursing & Allied Health Collection, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, Cochrane Methodology Register, LISTA, MedicLatina, PubMed, SciELO, and Science Direct. In addition, OpenAIRE, MedNAR Search, Worldwidescience-Global Science Gateway databases were searched for grey literature, as well as reference lists. The search yielded a total of 1259 articles after duplicates were removed, resulting in 25 articles published in Portuguese or English from 1984 to 2021. Only two articles reported hope-based interventions. The remaining articles specifically addressed the concept of hope or in combination with other related variables such as resilience or well-being among adolescents with cancer or chronic conditions. Thus, the results indicate that hope in adolescents was associated with positive outcomes of nursing interventions.
• •A longitudinal, single group, prospective cohort study was conducted to evaluate parental caregivers' perceptions of the quality of discharge teaching, discharge readiness, coping difficulty, and resource utilization for children with cerebral palsy (CP) who have undergone orthopedic surgery after their transition from hospital to home (DiFazio et al., 2023). Children ages at the time of surgery were between 3 and 20 years (mean age 12 years ±4.9 SD). Children with CP were predominantly male (59%), White (81%), and non-Hispanic (84%), with non-ambulatory CP and Gross Motor Function Classification (GMFCS) IV-V (92%), who were undergoing elective orthopedic surgery at a pediatric academic medical center. Parent participants (N  = 114) were English-speaking with a mean age 42 years (±10.2 SD), 33% employed full-time and 21% employed part-time, well-educated (37% college degree, 26% post-graduate degree, 12% high school diploma/GED), and primary caregivers of their child with CP at home. Data were collected at three time points: pre-operative, day of hospital discharge, and 4-weeks post-operative. Results indicate that there were no significant associations between the quality of discharge teaching subscales (QDTS) and readiness for hospital discharge survey (RHDS) with the need for additional resources. However, post-discharge parental coping (PDPC) was significantly associated with additional resource utilization, including length of stay (p  = 0.046), readmissions (p  = 0.001), emergency department visits (p  = 0.001), clinic calls (p  = 0.001), and unplanned clinic visits (p  = 0.006). A small, significant negative association was found between post-discharge parental coping and the quality of discharge teaching (r  = −0.32, p  = 0.004). Readiness for hospital discharge was negatively associated with three post-discharge parental coping subscales: child personal status (r  = −0.24, p  = 0.02), knowledge (r  = −0.30, p  = 0.005), and readiness coping ability (r  = −0.39, p  < 0.001). Qualitative open-ended questions illustrated parental coping difficulties through four themes: (a) The presence of pain and its ramifications; (b) Management of care routines; (c) Additional post-operative needs; and (d) Altered family dynamics. Parent caregivers' readiness for hospital discharge post-orthopedic surgery for their child with CP was not reflected by their coping difficulties and parents were more likely to experience difficulty managing the child's care needs post-discharge from hospital to home.
• •A cross-sectional survey was employed to examine parental readiness for the transition to adulthood for children with a chronic condition in Japan (Ozawa et al., 2023). Parents (N  = 179, 93.9% mothers) of adolescents (ages 10 to 19 years) with chronic conditions, including type I diabetes (n  = 26), cancer/blood disorders (n  = 83), cardiovascular disease (n  = 45), and allergies (n  = 25), treated at two pediatric outpatient clinics at a university hospital or children's hospital participated in the study. Parents were surveyed to determine their health literacy and healthcare transition readiness to adulthood. The majority of parents (60%) reported awareness and knowledge about their child's chronic condition, as well as the future need to transition from pediatric to adult healthcare. However, less than 20% of parents had obtained information about healthcare transition from pediatric to adult care, fostered their child's independent self-care, or encouraged their children to attend outpatient clinic visits alone. Parents of children with diabetes and cardiovascular disease exhibited higher transition readiness than parents of children with cancer/blood disorders. Thus, the results demonstrate the need for parental interventions to improve transition readiness for children with chronic conditions in Japan.

To that end, research focused on the stress associated with parenting demonstrates the universal scope of the challenges that parents encounter when their child experiences a health problem. Research and evidence-based practice projects provide effective nursing interventions to facilitate parental coping and adaptation to the stress of having a child with a health problem or chronic condition. In this way, parental stress is decreased and health outcomes are improved. Thus, when evidence is translated into pediatric nursing practice, the quality of care and health outcomes are improved for children and their families, while enhancing the quality of their lives.