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. Author manuscript; available in PMC: 2021 Dec 1.
Published in final edited form as: J Adv Nurs. 2020 Sep 29;76(12):3440–3447. doi: 10.1111/jan.14552

Establishing fidelity for the creating opportunities for personal empowerment: Symptom and technology management resources (COPE-STAR) intervention

Regena Spratling 1, Melissa S Faulkner 2, Rebecca Chambers 3, Patricia Lawrence 3, Iris Feinberg 4, Matthew J Hayat 5
PMCID: PMC7872076  NIHMSID: NIHMS1630948  PMID: 32989802

Abstract

Aim:

To establish intervention fidelity for the Creating Opportunities for Personal Empowerment: Symptom and Technology Management Resources web-based intervention to assist caregivers of children aged 1–5 years in managing their child’s symptoms and medical technology of tracheostomies and feeding tubes at home.

Design:

Descriptive study of the strategies used to establish intervention fidelity, specifically using expert and caregiver reviewers.

Methods:

To establish fidelity of the intervention, experts and caregivers were asked to evaluate the usefulness, ease of use, and acceptability of the intervention and provide any suggestions for the modules. Caregivers provided caregiver and child characteristics and were administered a health literacy measure, the Newest Vital Sign. Intervention fidelity was established from April 2019–July 2019.

Results/Findings:

Expert and caregiver reviewers (N = 13) all agreed or strongly agreed that the intervention was useful, easy to use, and acceptable. In addition, caregiver reviewers provided care to children who required multiple technologies and a variety of care needs at home and confirmed adequate health literacy (N = 5).

Conclusion:

The use of expert and caregiver reviewers was very beneficial in establishing intervention fidelity. Caregivers are experts in the care of their child and provide valuable feedback based on their daily experiences at home. Experts provided evidence-based feedback.

Impact:

This nursing intervention addresses caregivers of children who require medical technology by targeting caregiver management for common symptoms, related technologies, and resources for the child and caregiver in the home setting. Intervention fidelity was established and expert and caregiver reviewers confirmed the usefulness, ease of use, and acceptability of the intervention. This study is essential to nursing, other healthcare providers, and healthcare systems in planning and implementing programmes and services for children and their caregivers and for nurse researchers establishing intervention fidelity.

Trial registration:

This study is not designated as a clinical trial per NIH/NINR study and grant proposal guidelines.

Keywords: caregivers, children, complex chronic illness, feeding tube, intervention fidelity, medical technology, nursing, technological dependence, tracheostomy

1 |. INTRODUCTION

The use of expert reviewers is critical when creating effective research interventions. In nursing and health research, experts provide opinions and feedback from their experience or background to help strengthen a proposed intervention (Jonas, Crawford, Hilton, & Elfenbaum, 2017). Their feedback is especially helpful when evidence from literature is lacking (Coulter, Elfenbaum, Jain, & Jonas, 2016). Using experts, including clinical experts and expert caregivers, researchers can obtain thoughts and feedback that are evidence-based and founded in daily experiences on nursing and health care (Coulter et al., 2016). In the current study, web-based modules were developed for caregivers of children who require medical technology (e.g., tracheostomy and feeding tubes) for the COPE-STAR intervention using clinical experts from nursing and medicine and caregiver experts who provide care to these children (Spratling, Faulkner, Feinberg, & Hayat, 2020). The intervention is a modification of the Creating Opportunities for Personal Empowerment (COPE) intervention approach originally developed by Melnyk (Hart Abney, Lusk, Hovermale, & Melnyk, 2019; Melnyk, 2020; Melnyk, Alpert-Gillis, Hensel, Cable-Billing, & Rubenstein, 1997; Peek & Melnyk, 2014).

Following module development, intervention fidelity was established through review by both clinical content and health literacy experts and informal caregivers using a systematic, structured process and form. When creating an intervention for caregivers, caregivers with experience with a specific clinical population should be included in the review process, as they are not only experts in their child’s daily care but also stakeholders in their child’s overall health care. The purpose of this paper is to describe processes for ensuring intervention fidelity and the individualized steps that were incorporated to establish fidelity for the COPE-STAR intervention.

2 |. BACKGROUND

Children who require medical technology often also have multiple chronic conditions due to prematurity, trauma or injury, genetic conditions, or other non-specific conditions (Spratling, 2017) and require intensive, specialized care from informal caregivers (e.g., parents, foster/adoptive parents, grandparents). The COPE-STAR intervention focuses on educational support for caregivers of children aged 1–5 years that commonly experience symptoms of fever and increased respiratory symptoms (coughing, wheezing, increased secretions) requiring medical technologies of tracheostomy tubes, respiratory equipment, and feeding tubes (Spratling et al., 2020). Six web-based modules were developed, targeting caregiver management for these common symptoms, related technologies, and resources for the child and caregiver. The protocol details have been previously published (Spratlinget al., 2020). The script for each module was evidence-based, provided information on troubleshooting and also presented step-by-step instructions on basic care approaches. In addition, each module included the emotional aspects of caring for a child with the child’s most common behavioural responses with the management of their symptoms and technologies at home and suggestions for caregivers on how they can best help their child with care at home.

This study used expert reviewers along with caregivers, called caregiver reviewers, to evaluate the modules. The goal was to provide web-based, multi-media educational reinforcement and skills in a format that is compatible with mobile devices (smart phones and tablets) for caregivers with children who require medical technology. Providing safe, efficient care to the medically complex pediatric population within a home setting is often viewed as challenging and stressful, especially when major, or even minor, adverse events occur (Peterson-Carmichael & Cheifetz, 2012). Peterson-Carmichael and Cheifetz (2012) state that while being a parent is hard, the difficulties of being a parent to a medically complex child is only magnified. These difficulties can include health complications, such as aspiration and infections, psychological, such as parental distress and impaired family interaction and economical, such as the strain of paying for devices or formula (Krom et al., 2019). Having first-hand experience, as either an expert with a clinical or academic background, or as a caregiver who has endured the same hardships, is invaluable when creating interventions.

Studies have used caregivers or parents as experts in intervention studies. In examining a patient-centred outcomes for children with asthma, parents were stakeholders so that findings and interventions would be useful and easily implemented across a variety of settings, including at home with parents (Shelef et al., 2016). Smith et al. (2019) found that parents want to be included as members of the research team and believe that their input would improve outcomes, making them more relevant, useful, and meaningful for the target audience. In a systematic review, several studies found that stakeholder involvement not only improved the relevance and acceptance of research but also increased the level of trust, understanding, and transparency between researcher and potential user (Concannon et al., 2014).

2.1 |. Theoretical framework

Intervention fidelity begins with study design that is guided by theory (Faulkner, 2012; Rew, Banner, Johnson, & Slesnick, 2018). COPE-STAR is based on the COPE intervention which is guided by a combination of theories, specifically the Self-Regulation Theory (Johnson, 1999), Control Theory (Carver & Scheier, 1982), and the emotional contagion hypotheses (Jimerson, 1987). For Self-Regulation Theory, the meaning of the healthcare experience is unique to each caregiver and the caregiver will make decisions on managing care and further decided whether they are satisfied or not with the outcomes of care (Johnson, 1999). Control theory further explains self-regulation in that knowledge and experience guide decisions and behaviours (Carver & Scheier, 1982). The emotional contagion hypothesis then presents that the behaviours and emotions affect the behaviours and emotions of others (Jimerson, 1987). In this study, the care decisions, knowledge, and experience of the caregiver are reinforced along with addressing the common behaviours of the child.

3|. THE STUDY

3.1 |. Aims

The aim of the study was to develop the COPE-STAR intervention using a web-based platform to assist caregivers of children aged 1–5 years to manage their child’s symptoms and medical technology at home. The specific research question was as follows: what are the fidelity and usability of the COPE-STAR intervention from expert and caregiver perspectives?

3.2 |. Design

The current study focuses on establishing intervention fidelity using expert reviewers and caregiver reviewers in an intervention development and feasibility study using a quasi-experimental one group design. Expert and caregiver reviewers reviewed the intervention to confirm that the intended content was acceptable for caregivers of children who require medical technology as part of intervention fidelity.

3.3 |. Setting and sample participants

Expert reviewers were recruited based on expertise with interventions, health literacy, and experience with care of children who require medical technology. Caregiver reviewers were recruited from the Technology Dependent Pulmonary Clinic (TDPC) at Children’s Healthcare of Atlanta (CHOA). All patients require a tracheostomy and our preliminary work noted that 88% require a feeding tube as well (Spratling, 2017).

3.4 |. Measures

Experts completed the COPE-STAR Expert Review Feedback Form. Caregivers were administered a caregiver and child characteristics and health literacy measure in addition to the COPE-STAR Expert Review Feedback Form.

3.5 |. COPE-STAR Expert Review Feedback Form

Intervention fidelity was established through review by both clinical content and health literacy experts and informal caregivers using a systematic, structured process and form. The COPE-STAR Expert Review Feedback Form was adapted from previous use in interventions to assess the modules (Bakas et al., 2009; Blanton, Clark, & Dunbar, 2017). The form assessed amount of time to review module; subscales of usefulness (module, video, written text), ease of use (navigation of website), and acceptability; and also included open-ended questions. Average item scores were computed for subscales of usefulness, ease of use, and acceptability with scores ranging from 1 to 5 (strongly disagree to strongly agree).

3.6 |. Caregiver and child characteristics

Characteristics of the caregiver and child were measured using an investigator-developed form that has been used in previous studies, capturing essential data about the caregiver, and the healthcare needs of the child at home. Caregiver characteristics included household income, number of persons living in the home, duration of caregiving and caregiver age, gender, education, and race/ethnicity. Child characteristics included age, gender, race/ethnicity, medical diagnoses, medical technologies required, length of time the child has required medical technologies, and other care (trained caregivers, home nursing care, and rehabilitation therapies).

3.7 |. Caregiver health literacy

The health literacy of the caregiver was measured with the Newest Vital Sign (NVS; Weiss et al., 2005). The NVS measures three different components of health literacy for adults – prose, numeracy, and documents. A participant reads an ice cream label and answers six questions relating to the ice cream label which translate skills to a broader health context through application of information. If the participant scores the first four questions correctly, the questions can be stopped as the participant almost certainly has adequate health literacy. A score of 3 or less indicates marginal or limited health literacy. The NVS is normed for ages 18 and older. Construct validity has been established with existing health literacy measures and the internal consistency reliability is 0.76 (Rowlands et al., 2013; Weiss et al., 2005).

3.8 |. Participant screening and recruitment

Expert reviewers were sent an email by the Principal Investigator (PI) which included a link to the web-based modules and instructions and password for access. In addition, experts were sent a link to the online COPE-STAR Expert Review Feedback Form. Expert reviewers contacted included the research team, co-investigators and consultants, who had expertise with interventions and children who require medical technology. In addition, clinical experts of nurses, nurse practitioners (NPs), and physicians at the TDPC were asked to review the modules. Lastly, graduate research assistants (GRAs) who were currently nurses, including NP students and current NPs were also asked to review the modules.

Caregiver reviewers were recruited from a specialty clinic that focused on children who required respiratory support via a tracheostomy. Once potential participants were identified by clinic staff, caregiver reviewers were contacted to confirm willingness to participate, assess eligibility, and schedule an in-person home visit. The PI or research assistants were available at clinic on routine clinic days to discuss the study and conduct in-person pre-screening with potential participants. The home visit included overview of the study, explaining the study, confirming eligibility, obtaining written informed consent, administering measures, and providing written instructions and a demonstration of how to reach the web-based modules and a password to access the modules. They were also provided a link to the online feedback form.

3.9 |. Data collection

The current study to establish intervention fidelity of the web-based modules included assessment of clinical content and level of health literacy for each module. Data were obtained from experts, which included healthcare professionals, and caregivers, to provide feedback on clinical content for the modules. Additional reviewers included experts in web-based intervention design and a health literacy expert. The goal was to recruit and enrol six caregiver reviewers for the study and a minimum of six reviewers that were experts.

After watching all six modules, all reviewers were asked to give their individualized input via the link to the online feedback form. To begin, reviewers were asked to approximate how much time it took to complete each module, using increments of 5 min (i.e., less than 5 min, 5–10 min, etc.). The reviewers were then asked to assess the effectiveness, ease of use, accuracy, feasibility, and acceptableness using a 5-point Likert scale for each of the six modules. The reviewers were also asked which module was the best and worst overall and if they had any areas of concern or suggestions to make. In addition to completing the feedback form, caregiver reviewers were asked to make notes of any words they did not know or understand. The caregiver reviewers also were administered caregiver and child characteristics and health literacy measure. Research Electronic Data Capture (REDCap) was used to capture online form data and manage that data (Harris et al., 2009).

3.10 |. Data analysis

All data collection documents are existing reliable and valid instruments or have been designed by the PI. Participant health information was de-identified. Descriptive statistics were used to summarize sample characteristics and responses to standard questionnaires using SPSS Version 26.0 (SPSS, 2019). For the expert review feedback form, acceptability was considered answers of four or greater on a 5-point Likert scale (4: agree, 5: strongly agree). Average item scores were computed for subscales of usefulness, ease of use, and acceptability with scores ranging from 1–5 (strongly disagree to strongly agree). Qualitative data from open-ended questions were content coded and described using participant phrases (Sandelowski, 2010).

3.11 |. Ethical considerations

Considering the study rationale, population, procedures, and the risk, this study was considered minimal risk. The study was approved by the Institutional Review Boards of the healthcare system and university and a Data Safety and Monitoring Plan was prepared in the unlikely occurrence of adverse events. All expert reviewers had knowledge and expertise in health care and research. All caregiver reviewer participants met study eligibility criteria and completed the written informed consent process. Caregivers were directed to seek emergent care in the event of an emergency or life-threatening event at the beginning of all modules because the use of these modules in an emergency situation is discouraged for the safety and well-being of the child. All data were coded by participant identification numbers which were stored separately from written consent forms and only the PI had access to each participant’s identity. REDCap was used to capture and manage data (Harris et al., 2009).

3.12 |. Validity and reliability/rigour

In this study, fidelity was established for an intervention that was developed based on Self-Regulation Theory (Johnson, 1999), Control Theory (Carver & Scheier, 1982), the emotional contagion hypotheses (Jimerson, 1987), and the established (COPE) intervention (Hart Abney et al., 2019; Melnyk, 2020; Melnyk et al., 1997; Peek & Melnyk, 2014). In addition, the intervention was standardized in a web-based format that contained multi-media modules (PowerPoint, video and photo demonstrations, scripted audio) with an accompanying manual to maintain adherence to study procedures for the nurse researchers (Faulkner, 2012; Rew et al., 2018). Intervention fidelity was established using expert and caregiver reviewers who provided feedback on the intervention with a structured process and form. Expert reviewers had expertise with nursing interventions, health literacy, and experience with care of children who require medical technology. Home visits were conducted with experienced caregiver reviewers to collect data on caregiver and child characteristics and also health literacy using a valid and reliable measure and to demonstrate access and use of the web-based modules. All data were collected by the PI and was checked by the PI after data were entered into REDCap by the trained research assistants.

4 |. RESULTS

4.1 |. Caregiver and child characteristics

The modules were reviewed by content experts (N = 8) and caregiver reviewers (N = 5) for a total of 13 participants. Six caregiver reviewers were recruited and enrolled for the study as was the goal; however, only five caregiver reviewers reviewed the modules and completed the feedback form. Data from caregiver and child characteristics, for the five caregiver reviewers that completed the study are presented in Table 1. No characteristics data were obtained for the expert reviewers.

TABLE 1.

Characteristics of the caregivers (N = 5) and children (N = 5)

Characteristic Count (Percent)
Caregiver Gender
  Female 5 (100%)
Ethnicitya
  Non-Hispanic/Latino 5 (100%)
Racea 
  Caucasian/White 2 (40%)
  African-American 3 (60%)
Education
  Some High School 1 (20%)
  Some College 1 (20%)
  College Graduate 1 (20%)
  Postgraduate Study 2 (40%)
Annual Household Income
  $50,000 or Less 3 (60%)
  Greater than $50,000 2 (40%)
Child Gender
  Male 3 (60%)
  Female 2 (40%)
Respiratory support
  Mechanical ventilation 1 (20%)
  CPAP onlyb 2 (40%)
  HTC onlyb 2 (40%)
  Nebulizer use 5 (100%)
  Airway clearance usec 2 (40%)
Enteral feedings use
  Gastrostomy tube 4 (80%)
  Jejunostomy tubed 1 (20%)
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a

Race/ethnicity of caregiver and child were the same

b

Acronyms: continuous positive airway pressure (CPAP), humidified tracheostomy collar (HTC)

c

Vest therapy and/or cough assist/in-exsufflator.

d

Includes combination gastrostomy/jejunostomy tube

The caregiver reviewers were all female (N = 5), ranged from 28 to 40 years of age (mean = 34.8, SD 4.9), were predominately African-American (N = 3, 60%), and Non-Hispanic/Latino (N = 5, 100%). The caregivers had some college to postgraduate study (N = 4, 80%) and an annual family income of $50,000 or less (N = 3, 60%). Caregivers cared for an average of two children in the home (mean = 2.4, SD 1.1) which included the child who required medical technology.

The children who required medical technology ranged in age from 3 to years (mean = 4, SD 0.7). They were also predominately African-American (N = 3, 60%) and Non-Hispanic/Latino (N = 5, 100%) similar to the caregivers. The children had experienced a tracheostomy since 6 months of age on average (SD 0.3) with a range from 1 month to 1 year of age. All used a Passy-Muir® valve (N = 5, 100%), also known as a speaking valve. These children required respiratory support of mechanical ventilation (N = 1, 20%), continuous positive airway pressure (CPAP; N = 2, 40%), and humidified tracheostomy collar (HTC; N = 2, 40%). All required a nebulizer (N = 5, 100%) and some required airway clearance (N = 2, 40%), such as vest therapy and/or cough assist, also known as an in-exsufflator, as part of their respiratory therapy regimen. All required a feeding tube, specifically a gastrostomy tube (N = 4, 80%) and combined gastrostomy/jejunostomy tube (N = 1, 20%). All received physical therapy (N = 5, 100%) and most received occupational therapy (N = 4, 80%) and speech therapy (N = 4, 80%). The medical diagnoses of the children varied widely, but included respiratory issues of respiratory failure, chronic lung diseases, and bronchopulmonary dysplasia; airway issues such as tracheomalacia; and feeding difficulties associated with dysphagia, oral aversion, and oesophageal atresia. These technology needs and diagnoses are typical of children who require tracheostomies and feeding tubes. In addition, home nursing care hours were on average 73 hr per week (mean = 72.8, SD 10.6) with a range of 63–84 hr per week. The number of trained caregivers in the home, not including home nurses, ranged from two to five caregivers was on average two trained caregivers (mean = 2.6, SD 1.3).

4.2 |. Caregiver health literacy

Caregivers demonstrated adequate health literacy with all scoring a level of four on the NVS (N = 5, 100%). Of the five caregivers, four completed the measure by answering the first four questions correctly, demonstrating adequate health literacy. Only one caregiver was administered all six questions, but answered four of the six correctly, also demonstrating adequate health literacy.

4.3 |. Expert and caregiver review

Expert reviewers and caregiver reviewers (N = 13) all agreed or strongly agreed (see Table 2) that the intervention was useful (range = 98–100% per module), easy to use (range = 85–92% per module), and acceptable (range = 92–100% per module) for a caregiver to understand, use and navigate, an acceptable for learning about the symptoms and medical technology of the children. Average review time was 5–10 min per module (range = 67–85% per module).

TABLE 2.

Percentage of expert and caregiver reviewers that agreed or strongly agreed (N = 13)

Fever Respiratory Symptoms Tracheostomy Tube Respiratory Equipment Feeding Tubes Resources
Usefulness  100%  100%  100%    98%    98%    98%
Ease of Use    92%    85%    92%    92%    92%    92%
Acceptability  100%    92%  100%    92%  100%  100%
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Open-ended feedback aligned with the usefulness, ease of use, and acceptability of the COPE-STAR intervention modules and also included suggested improvements and edits to the modules prior to feasibility testing of the modules. Reviewers overall viewed the modules as helpful with the tracheostomy module perceived as most helpful. Reviewers offered suggestions to the video format and production, such as slowing down the transitions within the modules; however, most suggested no additions, deletions, or changes to the modules. Suggestions that were not feasible in the current study but will be incorporated in the future are offering modules in other languages, using child mannequins and actual children in videos, presenting more information on parental and family support and providing printed material or scripts as companion education along with the modules.

5 |. DISCUSSION

The results of this expert and caregiver review confirmed the usefulness, ease of use, and acceptability of the COPE-STAR intervention by caregivers of children who require medical technology, specifically tracheostomies and feeding tubes. Expert and caregiver reviewers also established intervention fidelity by validating the intended content of the intervention. COPE-STAR was helpful education for caregivers of children who require medical technology, feasible for healthcare providers to incorporate into caregiver education, and feasible for caregivers to access the web-based intervention modules on their own devices (smart phones, tablets, and computers) in addressing the management of symptoms and medical technologies associated with tracheostomies and feeding tubes. Expert and caregiver reviewers both used a structured feedback form and provided similar ratings and suggestions for the modules, confirming the content through both caregiver knowledge and experience at home and expert knowledge of evidence-based practice.

This study of caregiver reviewers was small, but the characteristics of them and their children who require medical technology are similar to that of previous studies by the author and others (Spratling, 2017; Spratling & Lee, 2020; Toly, Blanchette, Al-Shammari, & Musil, 2019; Toly, Blanchette, & Musil, 2019). These children require multiple technologies, primarily respiratory, and feeding support and a variety of care needs at home (Spratling, 2017; Toly, Blanchette, Al-Shammari, et al., 2019). This study also presents key details of those care needs at home, including varying respiratory support from HTC to more complex support of CPAP and ventilator assistance. In addition, the availability of home nursing hours per week and trained caregivers for the child depicted that these resources were accessible to the caregivers; however, the actual use and quality of these resources are of interest for future studies.

To our knowledge, this is the first study to assess health literacy in this population of caregivers of children who require medical technology. The study depicted a group of caregivers with adequate health literacy. These caregivers also had a higher level of education. Studies of caregivers of other populations of chronic illness have also noted higher health literacy in those with higher educational levels. For example, in a study of caregivers of adolescents with sickle cell disease, caregivers with adequate health literacy also had higher levels of education (Yee et al., 2019). Continued exploration of health literacy in caregivers of children who require medical technology with more diverse educational levels is warranted. In addition, these caregivers had experience and knowledge with their child’s respiratory and feeding tube care at home. Future studies of caregivers prior to discharge from the hospital with their child who requires medical technology is of interest to the researcher, as health literacy may improve over time with care of these children with complex chronic conditions. In addition, other populations of children with complex chronic conditions and medical technology needs should be explored with some or all of the current modules and also expanded modules for other technologies.

The aim of the future study, currently in progress, is the feasibility testing of the COPE-STAR intervention. Findings from this study were used to refine the intervention prior to feasibility testing with a larger sample of caregiver participants to determine recruitment, retention, adherence rates, and caregiver satisfaction with COPE-STAR. Preliminary evidence from the feasibility study in progress (N = 18) indicates that COPE-STAR improves caregivers’ management of their child’s chronic condition, specifically care of the tracheostomy and feeding tube.

5.1 |. Limitations

The expert reviewers were scattered across the USA with education and expertise in a variety of disciplines (nursing, medicine, health literacy) and having varied expertise in the number of years and type of care provided to children who require medical technology (nurse, NP, physician). These differences may affect knowledge level and expertise; however, the goal of the module review was varied in its needs for content accuracy, health literacy, intervention format and usefulness, ease of use, and acceptability. The sample of caregiver reviewers was from the same state, in a clinic with providers in the same healthcare system and insured by entities in the same state; thus, these caregivers may experience a similar trajectory of care, including training in the hospital and hospital length of stay and discharge based on hospital policies and insurance guidelines. These similarities may affect caregiver education at discharge and followup and subsequently caregivers’ self-management of symptoms for their children who require medical technology at home. However, the focus of this study is to improve caregivers’ management of their child’s symptoms and medical technology at home common to all caregivers. Lastly, the results from this study could differ from the experiences of children who require other medical technologies besides a tracheotomy and feeding tube as these children and their caregivers experience a variety of chronic conditions and care needs at home.

6 |. CONCLUSION

The use of expert reviewers and caregiver reviewers was very beneficial in refining the COPE-STAR intervention for feasibility testing in caregivers of children who require medical technology. Experts and caregivers agreed that the intervention was helpful to caregivers and feasible for caregivers and also feasible for healthcare providers to incorporate into caregiver education. These caregivers are experts in the care of their child who requires medical technology and can provide valuable feedback based on their daily experiences at home. Experts, in turn, can provide evidence-based feedback. Interventions should include review by both clinical and caregiver experts. This approach also expands the research team and provides opportunities for engagement from stakeholders in the research. In addition, nursing interventions such as COPE-STAR are much needed in this understudied population of caregivers of children who require medical technology and these modules may be useful to other populations of children with multiple chronic conditions, other medical technologies, and a variety of care needs.

ACKNOWLEDGEMENT

Funding was provided by the National Institute of Nursing Research, National Institutes of Health Grant Number 1R15NR018037-01.

Funding information

National Institute of Nursing Research, Grant/Award Number: 1R15NR018037-01

Footnotes

PEER REVIEW

The peer review history for this article is available at https://publons.com/publon/10.1111/jan.14552.

CONFLICT OF INTEREST

The authors declare no conflicts of interest.

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