Efficacy of a Resourcefulness Intervention to Enhance the Physical and Mental Health of Parents Caring for Technology-dependent Children at Home: A Randomized Controlled Trial.

INTRODUCTION: Parent caregivers of children who require lifesaving medical technology (e.g., mechanical ventilation, feeding tubes) must constantly maintain vigilance. Poor physical and psychological health can negatively impact their ability to do so. METHOD: A two-arm randomized controlled trial was conducted with 197 parent caregivers of technology-dependent children (aged < 18 years) to test the efficacy of Resourcefulness Training1, a cognitive-behavioral intervention that teaches social (help-seeking) and personal (self-help) resourcefulness skills, in improving key outcomes including mental health-related quality of life (HRQOL), depressive cognitions and symptoms, perceived and physiological chronic stress, burden, and physical HRQOL at five-time points. RESULTS: Mixed-effects models using the intent-to-treat principle indicated statistically significant improvement with intervention participants at six and/or nine months postintervention for depressive cognitions, perceived stress, and physical HRQOL, controlling for covariates. DISCUSSION: Study findings support the efficacy of Resourcefulness Training to significantly decrease perceived stress and improve psychological/physical outcomes with these vulnerable caregivers.

Postal Delivery of Sleep Monitoring Devices: Research Implications.

The purpose of this article is to describe the protocol development, feasibility, and lessons learned in the postal mail delivery of sleep monitoring devices to study participants. The original study protocol included four in-person visits with distribution of a sleep monitoring device (Actiwatch) and return of the Actiwatch via the postal service in a self-addressed, stamped envelope. The COVID-19 pandemic limited in-person research contact thus requiring a remote study protocol for application and return of the Actiwatches using postal delivery. While there were postal delivery and return challenges, the overall return rate of 94.4% confirmed remote protocol feasibility. Key lessons learned were: consistent and frequent communication via telephone calls and/or text; confirming required postage; and use of package tracking labels. All these strategies contributed to successful postal delivery/return and concomitantly decreased the potential loss of data and valuable research equipment.

Collaborative development of an innovative virtual research recruitment strategy through an academic/clinical partnership.

PURPOSE: Recruitment for research studies is the crucial first step and often the most challenging one. A major shift in recruitment methods for research was necessitated by the onset of the COVID-19 pandemic. Our goal is to describe lessons learned and the success rate of virtual research recruitment compared with other research recruitment strategies employed by our Academic/Clinical Partnership research team. METHODS: A descriptive design was employed to assess the success of in-person, mailed introductory letters with follow-up telephone calls and virtual recruitment strategies. The potential participants (N = 144) were parents caring for technology-dependent children (e.g., mechanical ventilation, feeding tubes) at home. To meet recruitment goals the Academic/Clinical Partnership research team (academic project team, hospital-based research nurses) collaboratively developed creative recruitment strategies and a framework to assess recruitment strategy success; percentage who agreed to be contacted by the academic partner, total time for recruitment visit, efficiency, and adherence to ethical recruitment principles. RESULTS: Virtual recruitment via telehealth visits was highly successful meeting all recruitment strategy benchmarks. Importantly, 91.7 % of potential participants that were approached agreed to be contacted for enrollment in a time efficient manner while adhering to ethical recruitment principles. Best practices and lessons learned were identified. CONCLUSIONS: The transition to virtual study recruitment due to the pandemic was an innovative and successful strategy. An Academic/Clinical Partnership research team benefits both partners: (1) enhances study recruitment by increasing research capacity at the clinical site; and (2) provides mentoring by nurse scientists to facilitate nurse research scholar knowledge and skills.

Self-collection of hair samples during the COVID-19 pandemic.

Purpose: Due to the COVID-19 Pandemic, public health restrictions were implemented that required study protocol revisions for our collection of hair cortisol samples from in-person to self-collection. The purpose is to provide descriptions of the protocol transition process from in-person hair cortisol sample collection to participant self-collection using written and video instructions as well as the acceptability and feasibility of this transition. Main results: The protocol transition required revisions to the written instructions with a link to a newly developed video for hair sample self-collection. There was little difference in the initial participant agreement to provide a hair sample between in-person (79/114; 69.3%) versus self-collection (254/417; 60.9%) protocol methods. Some participants were initially hesitant to provide a self-collected hair sample but commented that self-collection was easier than they anticipated which supports the acceptability of this protocol change. However, regarding feasibility, 16.8% of participant self-collected hair samples were not received by study staff despite reminders (14.3%) or there was an issue with mail delivery or return (2.5%). Major conclusions: The transition of our hair sample collection protocol from in-person to self-collection was acceptable and feasible. Providing instructions for hair sample self-collection in a variety of formats (oral, written, video) helped to decrease uncertainty and hesitancy regarding the process and promote agreement among participants. In addition, consistent follow-up communication was key to timely receipt of the hair samples from participants.

Resourcefulness Intervention Efficacy for Parent Caregivers of Technology-Dependent Children: A Randomized Trial.

Parent caregivers of children who require lifesaving technology (e.g., mechanical ventilation, feeding tubes) must maintain a high level of vigilance 24/7. A two-arm randomized controlled trial tested the efficacy of a resourcefulness intervention on parents' mental/physical health and family functioning at four time points over six months. Participants (n = 93) cared for their technology-dependent children <18 years at home. The intervention arm received teaching on social (help-seeking), personal (self-help) resourcefulness skills; access to the intervention video and skill application video-vignettes; four weeks of skills reinforcement using daily logs; four weekly phone contacts; and booster sessions at two- and four-month postenrollment. The attention control arm received phone contact at identical time points plus the current standard of care. Statistically significant improvement was noted; fewer depressive cognitions and improved physical health for the intervention participants than attention control participants over time after controlling for covariates. The findings support the resourcefulness intervention efficacy.

Exploring Sleep Health in Young Adults with Type 1 Diabetes.

The purpose of this qualitative descriptive study was to describe the sleep health goals in 35 young adults age 18-30 years with type 1 diabetes (T1D). We reviewed clinician sleep reports generated from wrist-worn actigraphs with participants during an in-depth semistructured telephone interview. Interviews were audio-recorded then transcribed verbatim. We performed a constant comparison method for content analysis using NVivoTM. The following two overarching health goals are identified: (a) promoting sleep (quantity, quality, hygiene, bedtime/waketime) and (b) improving diabetes self-management (time in range, sleep and glucose monitoring, and diet). Young adults in the study readily generated goals after visualizing their sleep reports. Sleep data visualization and debriefing is an effective strategy to elicit health goals for young adults with T1D. Supporting young adults with T1D to achieve their health goals for sleep promotion and diabetes self-management is a promising direction for improved sleep and consequently the attainment of glycemic targets.

Mothers' Voices Related to Caregiving: The Transition of a Technology-Dependent Infant from the NICU to Home.

PURPOSE: The transition from the NICU to home is a complicated, challenging process for mothers of infants dependent on lifesaving medical technology, such as feeding tubes, supplemental oxygen, tracheostomies, and mechanical ventilation. The study purpose was to explore how these mothers perceive their transition experiences just prior to and during the first three months after initial NICU discharge. DESIGN: A qualitative, descriptive, longitudinal design was employed. SAMPLE: Nineteen mothers of infants dependent on lifesaving technology were recruited from a large Midwest NICU. MAIN OUTCOME VARIABLE: Description of mothers' transition experience. RESULTS: Three themes were identified pretransition: negative emotions, positive cognitive-behavioral efforts, and preparation for life at home. Two posttransition themes were negative and positive transition experiences. Throughout the transition, the mothers expressed heightened anxiety, fear, and stress about life-threatening situations that did not abate over time despite the discharge education received.

Maternal Factors Associated With the Healthcare Utilization of Technology-Dependent Infants Following NICU Discharge.

This study examined the relationship of mothers' psychological well-being (depressive symptoms, posttraumatic stress symptoms) and resourcefulness with their technology-dependent infants' healthcare utilization (rehospitalization, emergency department [ED] visits) following discharge from the neonatal intensive care unit (NICU). This descriptive, correlational study was conducted at a large Midwest level 4 NICU in the United States. Mothers (n = 19) with a technology-dependent infant (eg, supplemental oxygen, feeding tubes) to be discharged home from the NICU within 2 to 3 weeks were interviewed face-to-face using standardized instruments. Infant rehospitalization and ED visit data were collected from the electronic medical record (EMR) for the first 3 months following the infant's discharge. Analyses included descriptive statistics and negative binomial regression. A majority of infants (72.2%) required at least 1 hospitalization; 33% required at least one ED visit. Mothers' age and resourcefulness were significant predictors of ED visits while only resourcefulness predicted rehospitalizations. Neither depressive symptoms nor posttraumatic stress symptoms significantly predicted healthcare utilization. Maternal resourcefulness was the only main variable that significantly predicted both ED visits and hospitalizations and one of the few modifiable factors that could assist mothers with successfully coping with the complexity of caring for a technology-dependent infant. Future research should focus on interventions to enhance mothers' resourcefulness prior to their technology-dependent infant's NICU discharge.

Maternal Stress and Mental Health Prior to Their Technology-Dependent Infant's Discharge Home From the NICU.

Mothers of infants in the neonatal intensive care unit (NICU) face stressors including turbulent emotions from their pregnancy/unexpected preterm delivery and their infant's unpredictable health status. The study purpose was to examine the psychological state of mothers prior to the discharge of their technology-dependent infants (eg, feeding tubes, supplemental oxygen) from the NICU to home. The study sample consisted of mothers (N = 19) of infants dependent on medical technology being discharged from a large Midwest NICU. A descriptive, correlational design using convenience sampling was employed to recruit mothers to examine associations of infant and maternal factors, resourcefulness, and stress with psychological state (depressive symptoms, posttraumatic stress symptoms). Forty-two percent of mothers were at high risk for clinical depression, with 37% in the clinical range for posttraumatic stress disorder. Increased maternal depressive symptoms were significantly associated with the increased frequency and perceived difficulty of their stress and posttraumatic stress symptoms. Increased posttraumatic stress symptoms were significantly associated solely with elevated depressive symptoms. This study identified factors associated with the mothers' increased psychological distress, providing beginning evidence for future interventions to employ prior to their technology-dependent infant's NICU discharge.

Addressing Fertility in Adolescent and Young Adult Oncology Patients: A Descriptive Study.

PURPOSE: Adolescents and young adults (AYA) undergoing cancer therapy may be at risk for infertility as a consequence of their treatment and should be informed of their risk of infertility and referred to infertility specialists at the time of diagnosis. The overall aim of the study was to describe fertility consult practices in AYA patients at a single institution. METHODS: We conducted a retrospective chart review over a 2-year time period collecting data on newly diagnosed or relapsed AYA oncology patients aged 10-30 years. Records of 57 charts were reviewed for documentation of initiation and completion of a fertility consult before starting cancer treatment. Demographic and medical data were collected to determine infertility risk stratification. Analyses included descriptive statistics, chi-squared analysis, and logistic regression analysis. RESULTS: Documentation of discussion of fertility risk before the initiation of therapy was noted in 19% of charts (n = 10). There was no statistically significant relationship between documentation of the initiation or completion of a fertility consult and infertility risk. Demographic and medical factors were not associated with higher odds of having completed a fertility consult. Documentation of the initiation of a fertility consult was associated with higher odds that a consult was completed (p < 0.001). CONCLUSION: Strategies are needed to improve documentation of discussions of infertility risk. Utilizing technology, promoting staff education, and developing enhancements in electronic medical record can provide triggers to promote documentation of the initiation of fertility consults. Implementing a fertility navigator could facilitate consultation and coordination of care for fertility preservation services.

Maternal Perspectives of Well Siblings' Adjustment to Family Life With a Technology-Dependent Child.

Technology-dependent (TD) children require complex care and are dependent on medical technology. Approximately 75% of families, in the United States, who are caring for a TD child, also care for a well child. Well siblings are likely to be affected by the experience of living with a TD sibling as the process of family normalization is described as a family affair. The experiences of well siblings are not well described. The purpose of this qualitative analysis was to describe the experiences of well siblings who are living in a family with a TD child. Mothers were interviewed about the experiences of their well children and were digitally audio recorded. The interviews were transcribed, and content analysis was conducted. Content analysis from the interviews revealed the major themes of well sibling adjustment within the family unit, upside (altruistic, prosocial behaviors) and downside (negative internal and external processing behaviors). These results can be applied to advance the delivery of family nursing care offered to these families.

Journaling as reinforcement for the resourcefulness training intervention in mothers of technology-dependent children.

Resourcefulness, a set of cognitive and behavioral skills used to attain, maintain, or regain health, is a factor related to depressive symptoms in mothers of children with chronic conditions and complex care needs who are dependent on medical technology such as mechanical ventilation or feeding tubes. The purpose of this secondary analysis of a randomized, controlled pilot intervention study was to determine the feasibility, acceptability and fidelity of daily journal writing as a method of reinforcement of resourcefulness training (RT) that teaches the use of social and personal resourcefulness skills. Participants returned their journals to the study office at the end of the four-week journaling exercise. Content analysis from exit interviews and journals supported the feasibility, acceptability and fidelity of daily journaling for reinforcement of RT in this population. Journal writing can be used by pediatric nurses to reinforce and promote resourcefulness skill use in parents of technology-dependent children.

Neonates and Infants Discharged Home Dependent on Medical Technology: Characteristics and Outcomes.

BACKGROUND: Preterm neonates and neonates with complex conditions admitted to a neonatal intensive care unit (NICU) may require medical technology (eg, supplemental oxygen, feeding tubes) for their continued survival at hospital discharge. Medical technology introduces another layer of complexity for parents, including specialized education about neonatal assessment and operation of technology. The transition home presents a challenge for parents and has been linked with greater healthcare utilization. PURPOSE: To determine incidence, characteristics, and healthcare utilization outcomes (emergency room visits, rehospitalizations) of technology-dependent neonates and infants following initial discharge from the hospital. METHODS: This descriptive, correlational study used retrospective medical record review to examine technology-dependent neonates (N = 71) upon discharge home. Study variables included demographic characteristics, hospital length of stay, and type of medical technology used. Analysis of neonates (n = 22) with 1-year postdischarge data was conducted to identify relationships with healthcare utilization. Descriptive and regression analyses were performed. FINDINGS: Approximately 40% of the technology-dependent neonates were between 23 and 26 weeks' gestation, with birth weight of less than 1000 g. Technologies used most frequently were supplemental oxygen (66%) and feeding tubes (46.5%). The mean total hospital length of stay for technology-dependent versus nontechnology-dependent neonates was 108.6 and 25.7 days, respectively. Technology-dependent neonates who were female, with a gastrostomy tube, or with longer initial hospital length of stay were at greater risk for rehospitalization. IMPLICATIONS FOR PRACTICE: Assessment and support of families, particularly mothers of technology-dependent neonates following initial hospital discharge, are vital. IMPLICATIONS FOR RESEARCH: Longitudinal studies to determine factors affecting long-term outcomes of technology-dependent infants are needed.

Factors Related to Depressive Symptoms in Mothers of Technology-Dependent Children.

Mothers caring for technology-dependent children at home often suffer clinically significant and unrecognized depressive symptoms. The study aim was to determine factors related to elevated depressive symptoms and provide information to target interventions that assists mothers in self-management of their mental health. Secondary data analysis from a descriptive, correlational study of 75 mothers was performed. Hierarchical multiple regression analysis results indicate that younger, unpartnered mothers with lower normalization efforts and personal resourcefulness, and less care hours, had increased depressive symptoms. The importance of personal resourcefulness and the potential for a resourcefulness training intervention to reduce depressive symptoms are discussed.

Charting the course of pediatric nursing research: the SPN Delphi study.

In order to inform the care of children at this pivotal time in the history of healthcare, the Society of Pediatric Nurses (SPN) sought to identify priorities for nursing research and key challenges facing pediatric nursing. A three round Delphi study was conducted electronically with SPN members. The top 10 priorities and challenges were identified and will serve as a valuable guide for pediatric nursing practice, education, policy and administration over the coming decade.

Resourcefulness training intervention: a promising approach to improve mental health of mothers with technology-dependent children.

The population of children dependent on medical technology such as mechanical ventilation, feeding tubes, and supplemental oxygen continues to grow in the United States. These children are frequently cared for by their mothers at home following hospital discharge. Research indicates that these mothers are at high risk for negative mental health outcomes that affect both caregiver and care recipient. The purpose of this randomized controlled pilot trial was to determine the feasibility, acceptability, and efficacy of resourcefulness training (RT), a cognitive-behavioral intervention, among mothers of technology-dependent children. RT was found to be a feasible and acceptable intervention with this population during the 6 week study. The effect size in this pilot study demonstrates initial efficacy and indicates areas for strengthening the intervention protocol. RT is a promising intervention that can be employed by pediatric nurses to assist mothers in the home management of technology-dependent children.

Families with children who are technology dependent: normalization and family functioning.

This cross-sectional study examined family functioning and normalization in 103 mothers of children ≤16 years of age dependent on medical technology (mechanical ventilation, intravenous nutrition/medication, respiratory/nutritional support) following initiation of home care. Differences in outcomes (mother's depressive symptoms, normalization, family functioning), based on the type of technology used, were also examined. Participants were interviewed face-to-face using the Demographic Characteristics Questionnaire, the Functional Status II-Revised Scale, the Center for Epidemiological Studies-Depression Scale, a Normalization Scale subscale, and the Feetham Family Functioning Survey. Thirty-five percent of the variance in family functioning was explained primarily by the mothers' level of depressive symptoms. Several variables were significant predictors of normalization. Analysis of variance revealed no significant difference in outcomes based on the type of technology used. Mothers of technology-dependent children are at high risk for clinical depression that may affect family functioning. This article concludes with clinical practice and policy implications.

A longitudinal study of families with technology-dependent children.

Few researchers have longitudinally examined families caring for technology-dependent children at home. We tested a theoretically and empirically based conceptual model by examining family functioning and normalization in 82 mothers (female primary caregivers) twice over 12 months. Time 1 and Time 2 cross-sectional findings were consistent; the only predictor of family functioning was mothers' depressive symptoms. Contrary to the proposed model, normalization, caregiving duration, and home nursing hours were not directly related to family functioning. Baseline family functioning significantly predicted future family functioning. Also, mothers whose children were no longer technology-dependent at Time 2 reported significant improvements in family functioning and normalization. An intervention to address high levels of depressive symptoms of these mothers is essential to optimizing family functioning.