Highlights
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Caregiver mental health correlates directly with child outcomes.
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Remotely conducted education and telehealth was feasible and acceptable to low-income caregivers.
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Virtual education increased caregiver asthma knowledge and decreased depresive symptoms.
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More caregiver education is needed in the area of medication administration.
Keywords: Asthma, Caregiver, Education, Parent, Telehealth, Virtual, Remote, Distance, Nursing
Abstract
Background: Caregivers of children with asthma demonstrate higher levels of anxious and depressive symptoms when compared to caregivers of healthy children.
Objectives: The objectives of this study were to: 1) Evaluate feasibility and acceptability of two nurse-led, remotely offered interventions for caregivers of children with asthma; 2) Compare effectiveness of two interventions (a virtual education session and a virtual education session supplemented with a telehealth visit) in relation to caregiver outcomes, and 3) Assess the preliminary effect of the interventions on caregivers’ knowledge of asthma, sleep, anxiety and depressive symptoms.
Methods: A mixed methods approach was used inclusive of a qualitative, descriptive design and randomized controlled trial design. Caregivers were provided virtual education and telehealth visits and evaluated from pre-posttest.
Results: The intervention was found to be feasible and acceptable. Both the virtual education session and telehealth visit were effective. The intervention had a significant effect on caregiver's asthma knowledge and depressive symptoms (p<.05), but did not affect caregiver's sleep or anxiety. Qualitative analysis of the virtual educational session revealed themes of 1) valuable learning experience, 2) more medication education needed, and 3) appreciated remote format. Qualitative analysis of the telehealth visits revealed themes of 1) educational, helpful, and worthwhile and 2) virtual offering was easy and convenient.
Conclusions: Remotely conducted, nurse-led interventions such as virtual education sessions and telehealth visits are a feasible, acceptable, and effective way to improve caregiver outcomes.
1. Background
Asthma is the leading chronic disease in children (Ferrante and La Grutta, 2018). Caregivers of children with asthma suffer physiologic stress, psychological stress, intellectual stress, and social stress (Ou et al., 2015). Caregivers of children with asthma often suffer psychological burdens from the stress of caring for a child with a chronic and potentially life-threatening condition. Caregivers of children with asthma suffer fear, worry, frustration, helplessness, and stress from a potential disease exacerbation or crisis (Chen et al., 2013; Riera et al., 2015; Shaw and Oneal, 2014). Targeted services that attend to the caregivers’ asthma management education needs and psychosocial stressors are paramount yet lacking (Bellin et al., 2013).
Caregivers of children with asthma demonstrate higher levels of both anxious and depressive symptoms when compared to caregivers of healthy children (Easter et al., 2015). Studies indicate that 28.1% to 48% of caregivers of children with asthma exhibit anxious and depressive symptoms (Feldman et al., 2013; Sampson et al., 2013; Blaakman et al., 2013). The low-income caregivers of children with asthma are at higher risk for experiencing anxiety and depression. In a study by Zhou et al. (2014), low socioeconomic status predicted caregiver anxiety and depression. The authors suggested that pediatric asthma programs include interventions aimed at reducing caregiver anxiety as well as providing medical and financial resources for families (Zhou et al., 2014).
The correlation between poor caregiver mental health and negative child outcomes has been well established. In fact, the level of caregiver depression predicts asthma morbidity (Clawson et al., 2016; Dilley et al., 2017; Rioseco et al., 2017; Martin et al., 2012). Rioseco et al. (2017) found that children whose caregivers exhibited depressive symptoms were significantly more likely to use inhaled corticosteroids than children of caregivers with no depressive symptoms. Additionally, caregivers with a depressive disorder have children who demonstrate greater levels of depressive symptoms (Feldman et al., 2013). Collectively, these data suggest that poor mental health of a family caregiver impacts child health outcomes.
Sleep is a factor that strongly relates to psychological health. Sleep is a significant protective factor for family caregivers (Koinis-Mitchell et al., 2015). Asthma is a condition that frequently flares up during nocturnal hours, preventing adequate sleep of the child and parents. Over two-thirds of children with asthma were classified as having poor sleep health (Koinis-Mitchell et al., 2015). Compared to healthy families, caregivers of children with chronic illness report poorer sleep quality and insomnia (Meltzer and Booster, 2016). Poorly controlled asthma (number of symptom nights) is strongly associated with low caregiver quality of life (Bellin et al., 2013). Evidence suggests that sleep may be an important factor in successful management of asthma for the family caregiver and the child with asthma.
Caregivers of children with asthma face significant psychosocial and socioeconomic burdens (Foronda et al., 2020, 2020; Prather et al., 2020). Psychosocial burdens include decreased mental health, quality of life, sleep, family stress, educational deficits, cultural and health disparities, and health care communication challenges (Foronda et al., 2020). Socioeconomic burdens include poor access to care, work challenges due to parents needing to take off to care for their ill child, and financial challenges due to poor insurance and cost of medications (Foronda et al., 2020). Challenges noted specific to African American caregivers of children with asthma include lack of home and neighborhood safety (Prather et al., 2020). Healthcare providers have noticed challenges for caregivers of children with asthma related to a fragmented health system, lack of asthma knowledge, poor access to healthcare and medications, non-adherence, and linguistic diversity and poor health literacy (Foronda et al., 2020). However, facilitators of optimal respiratory management included education, empowerment, improved communication, culturally competent healthcare providers, use of technology, and peer, family and community support (Foronda et al., 2020, 2020; Prather et al., 2020).
1.1. Telehealth
Telehealth is defined by the Health Resources and Services Administration of the US Department of Health and Human Services (2015) as “the use of electronic information and telecommunications technologies to support and promote long-distance clinical healthcare, patient and professional health-related education, public health and health administration. Technologies include videoconferencing, the internet, store-and-forward imaging, streaming media, and terrestrial and wireless communications” (p. 2). Telehealth has been shown to improve access to care among rural and medically disadvantaged communities (Bian et al., 2019). Regardless of their economic status or geographical location, cultural values, or backgrounds, families have attained self-management lessons and medical literacy through telehealth platforms (Ferrante et al., 2021; Lin et al., 2020).
Research suggests that the use of telehealth improves child and family caregiver outcomes (Armoiry et al., 2018; Bian et al., 2019; Hooshmand and Foronda, 2018; Lin et al., 2020). In the context of asthma management, Lin et al. (2020) implemented a school model incorporating video-based telehealth with electronic inhaler monitoring over six months. Before the intervention, 38.1% of participants indicated use of the ED/urgent care or hospitalization. After the intervention, no participants indicated use of the ED/urgent care or hospitalization. Participants demonstrated improvement in daytime symptoms, nighttime symptoms and exacerbations. Bian et al. (2019) conducted a retrospective analysis utilizing South Carolina Medicaid claims. They examined the association between telehealth programs established in South Carolina schools and all-cause emergency department visits of children enrolled in Medicaid. The researchers found that for children with asthma, the telehealth program was associated with approximately a 21% decrease in ED visits.
Although research supports use of telehealth, the impact of a nurse-led, telehealth intervention on the mental health outcomes of caregivers of children with asthma is unknown. As the majority of research on caregivers of children with asthma has been conducted on the outcome variable of quality of life (Ekim, 2016), this study will be a first step in testing two promising interventions to examine caregivers of children with asthma's mental health outcomes to improve the science of family caregiving. Therefore, the aims of the study were to:
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evaluate feasibility and acceptability of two remotely offered interventions for caregivers of children with asthma;
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compare effectiveness of two interventions (a virtual education session and a virtual education session supplemented with a telehealth visit) in relation to caregiver outcomes; and
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assess the preliminary effect of the interventions on caregivers’ knowledge of asthma, sleep, anxiety and depressive symptoms.
2. Methods
This study employed mixed methods inclusive of a qualitative, descriptive design and randomized controlled trial design (Fig. 1). To assess feasibility and acceptability of the remotely offered educational session, focus groups were conducted. To assess feasibility and acceptability of the telehealth visit, interviews were conducted using a structured questionnaire. Also, the principal investigator took field notes during the telehealth visits. For Aim 2, we used a pre-posttest design to collect the quantitative data. A Research Electronic Data Capture (REDCap™) survey link was emailed to participants at baseline and approximately one day to one week post-intervention (Harris et al., 2009, 2019). For Aim 3, data from the two cohorts were compared. The study was approved by the Institutional Review Board at the University of Miami under protocol 20190884.
Fig. 1.
Study schematic.
A convenience sample of thirty caregivers of children with asthma were recruited from an urban clinic in South Florida, USA specializing in pediatric pulmonology. Inclusion criteria included that caregivers of children with asthma a) must be able to speak and read English or Spanish, b) have a smartphone with active service, c) care for a child with newly diagnosed, poorly controlled or intermittent asthma, and d) care for a child with asthma between ages 5–12. Caregivers of children with asthma who expressed interest in the study were emailed an invitation to participate, a copy of the informed consent form in their preferred language, and a link and time to the educational session. Caregivers of children with asthma were enrolled and randomly assigned by the principal investigator using simple randomization to participate in a virtual educational session only or a virtual education session plus a telehealth visit. The study was registered under ClinicalTrials.gov Identifier: NCT04132297. The date of first recruitment was February 24, 2021. Participants were given a total of $100 for study participation including survey completion. Upon completion of the study, all participants were emailed an asthma action plan and a guide to local resources.
2.1. Virtual education session
Caregivers of children with asthma were provided a 45-minute, synchronous education session via Zoom (Zoom Video Communications, HIPAA-compliant version, San Jose, CA) by a doctoral-prepared nurse faculty member. The education session entailed a Powerpoint (Microsoft, Redmond, WA) presentation that addressed the following five objectives: 1) Understand how a child with asthma breathes, 2) identify asthma triggers, 3) recognize the difference between a rescue medication and a controller medication, 4) communicate effectively with the healthcare team, and 5) navigate the healthcare system. One video was shown that demonstrated how asthma affects the airways and a second video was shown that displayed correct use of an inhaler with a spacer. At the end of the session, approximately 15 min were left for questions and answers. Two educational sessions were provided in English and one educational session was offered in Spanish. Half of the participants were randomly assigned to the education session alone and half of the participants were randomly assigned to receive both the education session and a telehealth visit.
2.2. Telehealth visit
Participants communicated via email with the principal investigator to arrange a time to receive a 30-minute telehealth visit. The telehealth visit was led by a Doctor of Nursing Practice (DNP) student and supported by two nurse faculty members who also attended the remote visit. A HIPAA-compliant version of Zoom was used to conduct the synchronous telehealth visit. All student participants had received training about asthma and were provided a script to guide the telehealth visit dialog. Participants had an opportunity to ask questions unique to their child and circumstances.
2.3. Measures
Surveys were administered via REDCap and emailed to participants for completion. Surveys consisted of demographics (Table 1), the Asthma Knowledge Questionnaire (17 items, α = 0.73) (Martínez and Sossa, 2005) and three Patient-Reported Outcomes Measurement Information System (PROMIS ®) (Northwestern University 2021, IL, USA) Measures. PROMIS measures included: ASCQ-Me v2.0 Sleep Impact Short Form (5 items, α = 0.93), Anxiety-Short Form (8 items, α = 0.95), and Emotional Distress-Depression- Short Form 8a (8 items, α = 0.95). The time to complete these surveys was about 20–25 min. All instruments were translated to Spanish and then back-translated to English. Surveys were offered in both English and Spanish to participants.
Table 1.
Socio-demographic characteristics of the sample.
| Total (n = 18) | Standard (n = 9) | Telemedicine (n = 9) | p | ||||
|---|---|---|---|---|---|---|---|
| n | % | n | % | n | % | ||
| Age (Mean, SD) | 39.67 | 11.29 | 34.89 | 5.73 | .274 | ||
| Female | 18 | 100 | 9 | 100 | 9 | 100 | n/a |
| Ethnicity | .637 | ||||||
| Hispanic | 9 | 50 | 5 | 56 | 4 | 44 | |
| Non-Hispanic | 9 | 50 | 4 | 44 | 5 | 56 | |
| Race | .500 | ||||||
| White | 9 | 50 | 5 | 56 | 4 | 55 | |
| Asian | 1 | 6 | 0 | 0 | 1 | 11 | |
| Black, Haitian, or African American | 8 | 44 | 4 | 44 | 4 | 44 | |
| Highest level of education | .272 | ||||||
| Less than 12th grade | 4 | 22 | 3 | 33 | 1 | 11 | |
| High School of GED | 5 | 28 | 2 | 22 | 3 | 33 | |
| Some college | 4 | 22 | 2 | 22 | 2 | 22 | |
| College graduate | 5 | 28 | 2 | 22 | 3 | 33 | |
| Primary Language | .147 | ||||||
| English | 13 | 72 | 5 | 56 | 8 | 89 | |
| Spanish | 5 | 28 | 4 | 44 | 1 | 11 | |
| Family's annual income | .340 | ||||||
| <$10,000 | 5 | 28 | 3 | 33 | 2 | 22 | |
| $10,000 - $19,999 | 2 | 11 | 1 | 11 | 1 | 11 | |
| $20,000 - $29,999 | 2 | 11 | 0 | 0 | 2 | 22 | |
| $30,000 - $39,999 | 5 | 28 | 4 | 44 | 1 | 11 | |
| >$40,000 | 3 | 17 | 1 | 11 | 2 | 22 | |
| Unknown | 1 | 6 | 0 | 0 | 1 | 11 | |
| Relation to child with asthma | .500 | ||||||
| mother | 17 | 94 | 8 | 89 | 9 | 100 | |
| Grandmother | 1 | 6 | 1 | 11 | 0 | 0 | |
| Ethnicity of child | .500 | ||||||
| Hispanic | 11 | 61 | 6 | 67 | 5 | 56 | |
| Non-Hispanic | 7 | 39 | 3 | 33 | 4 | 44 | |
| Race of child | .155 | ||||||
| White | 7 | 39 | 5 | 56 | 2 | 22 | |
| Asian | 1 | 6 | 0 | 0 | 1 | 11 | |
| Black, Haitian, or African American | 8 | 44 | 3 | 33 | 56 | ||
| Child's asthma severity | .348 | ||||||
| Intermittent | 3 | 33 | 3 | 33 | 4 | 44 | |
| Mild | 2 | 1 | 2 | 22 | 0 | 0 | |
| Moderate | 1 | 11 | 1 | 11 | 0 | 0 | |
| Severe | 3 | 33 | 3 | 33 | 0 | 0 | |
| How controlled is child's asthma | .319 | ||||||
| Well-controlled | 8 | 44 | 5 | 55 | 3 | 33 | |
| Moderately controlled | 10 | 56 | 4 | 44 | 6 | 67 | |
2.4. Data collection
Immediately following the educational session, a focus group was conducted. Similarly, after each telehealth intervention, an interview using a structured questionnaire was conducted to assess feasibility and acceptability. Focus groups and interviews were conducted in English or Spanish depending on the participants preferred language by nurse researchers fluent in the language. The focus groups lasted from 12 to 30 min and the interviews lasted from 7 to 10 min. The focus groups and interviews were audio-recorded and professionally transcribed verbatim. For those completed in Spanish, they were professionally translated to English for analysis. The principal investigator attended all focus groups and interviews and recorded field notes to assist with future interpretation. As the field notes reflected the principal investigator's observations and interpretations as opposed to data expressed directly from participants, the analysis of the field notes are presented separately.
2.5. Data analysis
2.5.1. Qualitative
To evaluate the qualitative data, Sandelowski's (2000) method of content analysis was used. Transcripts were read and reread by two nurse researchers independently. Data were coded and analyzed for categories until consensus was achieved. Lincoln and Guba's (1985) criteria for trustworthiness were applied to enhance rigor. To establish credibility, peer debriefing and a negative case analysis were conducted. To enhance transferability, thick description was provided. Finally, to establish confirmability, the investigators practiced reflexivity as well as an audit trail.
2.5.2. Quantitative
To evaluate the pre and post-intervention data, jamovi, version 1.6 was used (The jamovi project, 2021). Mixed ANOVA models were used to examine change over time on measures of asthma knowledge, sleep, anxiety, and depression, and whether these changes differed by cohort (virtual education only or virtual education supplemented by telehealth). Models for each outcome were estimated separately with change over time as the within-subjects variable and cohort as the between-subjects variable. The interaction of the between- and within- subjects variables was also examined to determine whether the change over time varied by cohort. Separate models were estimated for each outcome (e.g., asthma knowledge, sleep, anxiety, and depression). Effect sizes were calculated and reported for each outcome variable. In addition, eta-squared was calculated for each model and interpreted based on Cohen (1988).
3. Results
3.1. Sample
A total of 18 female caregivers participated in this study. Table 1 summarizes the demographic characteristics of the sample. Almost all participants identified as mothers, with only one participant being a grandmother. The age of participants ranged from 27 to 67 with a mean of 37.28 years (SD = 9.03). Half of the participants were White (50%), 44% were Black, Haitian, or African American, and 1 was Asian. Half of the participants identified as Hispanic. The majority of participants preferred English (72%) and 28% preferred Spanish. The children with asthma that the participants cared for ranged from 5 to 12 years with a mean of 8 (SD = 2.52). Most of the children were Hispanic (61%), with 44.4% Black, Haitian, or African American, 39% White, 2 multiracial, and 1 Asian. Asthma severity varied from intermittent to severe with slightly more caregivers reporting that their child's asthma was moderately controlled (56%) compared to well-controlled (44%). No differences in demographic characteristics between treatment and control cohorts were observed.
3.2. Qualitative results regarding feasibility and acceptability
3.2.1. Virtual education session
Twelve individuals participated in the focus group sessions. The three following categories emerged from the qualitative data: 1) Valuable learning experience, 2) More medication education needed, and 3) Appreciated remote format. Caregivers expressed that they found it “worthwhile”, it was a “refresher”, that it validated what they were doing correctly and not doing correctly. Participant A indicated, “There are points that the doctors don't explain to you, and sometimes out of embarrassment or simply because you forget at that moment, you don't ask the questions and then you forget how to do it with the children's medications. Then you see that you did it wrong or you don't know exactly how they work 100%. And many times you don't know how to help your child to do it correctly.” Participants expressed learning about how to use an inhaler with a spacer, the difference between controller and rescue medication, triggers, pathophysiology, and self-advocacy. Participant B said, “I thought it was very good information…my son is 12 years old and he was three months old when they diagnosed him. He was too young to even be diagnosed, and he had to because he caught his first asthma attack where I didn't know anything, and lucky thing it helped me…to know like triggers, how to have a plan, and that so just in case if ever it does happen then I am more prepared to know what to do or how to handle it.” Participants indicated that they wished they could have learned more about the medications. They wanted to learn more about the inhalers, spacers, rescue medication dosing and timing, and nebulizer use. Participant C indicated, “I want to spend more time on the maximum amount of medication [how many times Albuterol can be given].” Last, participants appreciated the remote format of the educational session. Participant D said, “I think the virtual was a good way of doing it.” The majority of participants expressed they appreciated the convenience and simplicity of the virtual offering through Zoom.
3.2.2. Telehealth visit
Interviews from the nine telehealth visits revealed the two following themes: 1) Educational, helpful, and worthwhile, and 2) Virtual offering was easy and convenient. Participants expressed that they learned about medications, developing an asthma action plan, asthma triggers, allergies. Participant 1 indicated, “I got more information now and understood way more than I ever have as far as his medications….and what to do and what not to do…I just gained more information now than I have in the past six years.” Participant 2 said, “I thought they were helpful…certain things that I did not know even though I've been dealin’ with it for quite a while…I was doing the spacer, but I did not know about the breaths…the video showed me more of how to-the proper way of doing [it].” Six participants mentioned that using zoom was “easy”. The majority of participants also expressed that they felt the telehealth visits were convenient. Participant 3 mentioned, “I like it this way. It's great because I can be in the house with the kids. It seemed to me more convenient.” Participant 1 said she appreciated it “from the convenience of my own home…perfectly fine.” Barriers such as traffic and not having time to go to the office were mentioned as reasons the virtual offering was convenient.
3.3. Field notes
The principal investigator took field notes regarding the telehealth visits. Parents noted that because the study was conducted during the pandemic, that their child has had less exposure to illness and less asthma attacks. About half of the parents seemed to have a solid grasp of their child's medication management and the other half demonstrated large knowledge deficiencies. For example, one parent was inadvertently giving prednisolone as a controller medication. Another parent was giving albuterol as a controller medication. Additional problems noted included not having the medication available due to expiration or running out, having equipment that was not functional or broken (i.e. nebulizer equipment), not knowing what medications their child was taking (as they school nurse gives the medications), not being consistent with use of controller meds, and not being sure how the medication worked. Many of the parents noted that their child had allergies but their child had not been tested, did not have an allergy bracelet, or did not have an epi‑pen. None of the parents had an asthma action plan.
Of note, during the course of the educational sessions and focus groups, the caregivers started exchanging their stories and recommendations. A sense of bonding and community seemed to arise similar to that of a support group. They began opening up about their child's symptoms and challenges. When asked about the one most important thing that you learned today, one participant responded, “I felt like I'm not the only one going through this.”
Several parents asked if their child would outgrow asthma or if nutrition could cure it. One caregiver wanted to know if certain sports would make asthma better. One participant was interested in learning how to know if their child is ready to be weaned off of the medications. During display of the educational videos, two of the caregivers invited their child to quickly come over and watch it as well. One parent indicated that she would frequently take her son off of the medications as she did not like having him on medications; however, she appreciated learning that the medications take time to build up in the bloodstream to become effective and said she would start giving them daily now that she understood how they work.
3.4. Quantitative results
3.4.1. Comparison of interventions
There were no statistically significant differences in caregiver outcomes when the education alone cohort was compared to the education plus telehealth cohort. Therefore, the following data are from both cohorts combined evaluating the impact and effect of the intervention from pre to post-implementation.
3.4.2. Asthma knowledge
The intervention was found to have a significant effect on asthma knowledge, F(1, 16) = 11.06, p = .004, and corresponded to a large effect size (η2 = 0.139). Asthma knowledge significantly increased from before the intervention (M = 54.9) to after the intervention (M = 60.6). However, this effect did not differ by condition F(1, 16) = 0.34, p = .565 and corresponded to a negligible effect size (η2 = 0.004).
3.4.3. Sleep
The intervention was not found to have a significant effect on sleep, F(1, 16) = 0.85, p = .370. Moreover, the effect size was considered small (η2 = 0.007). Additionally, this effect did not differ by condition F(1, 16) = 0.59, p = .453 and also had a small effect size (η2 = 0.005).
3.4.4. Anxiety
The intervention was not found to have a significant effect on anxiety, F(1, 16) = 3.89, p = .066. However, the effect size was considered small-to-moderate (η2 = 0.044). Additionally, this effect did not differ by condition F(1, 16) = 1.22, p = .286 and corresponded to a negligible effect size (η2 = 0.014). Only one participant scored high for anxiety.
3.4.5. Depressive symptoms
The intervention was found to have a significant effect on depression, F(1, 16) = 6.52, p = .021, and corresponded to a small-to-moderate effect size (η2 = 0.038). Symptoms of depression were significantly lower after the intervention (M = 10.7) compared to before the intervention (M = 12.8). However, this effect did not differ by condition F(1, 16) = 0.07, p = .792 and corresponded to a negligible effect size (η2 < 0.001). Only one participant scored moderately for depression.
4. Discussion
The results of this study suggest that the interventions of a nurse-led, remote education and telehealth were feasible, acceptable, and positively affected caregiver outcomes. The interventions had a significant effect on increasing asthma knowledge as well as decreasing depressive symptoms. Although no impact was observed on sleep, the data regarding an impact on caregiver anxiety trended downward from pre-to-posttest, but not quite at a statistically significant level (p = .066). It may be possible that the sample size was not large enough to detect significance. Further, only one of the 18 participants demonstrated anxious and depressive symptoms per the scales. Because the caregivers in this sample had already been managing their child's asthma for months to years, it is possible that any caregiver anxiety or depression associated with their child's new diagnosis of asthma may have already resolved.
Of note, many of the caregivers indicated that the intervention would have been most helpful at the initial diagnosis of their child's asthma. The population of caregivers who cared for children age 5–12 years old was chosen as a focus to tailor education efforts about use of inhalers and spacers. However, it is suspected that this intervention would be more practically offered to parents whose children were newly diagnosed with asthma and for many, that would have required a focus on parents of children in a younger age group (i.e. age 2–4 years old) as well as an adjustment in the material taught. Future iterations of the Asthma Academy may attend to caregivers of the newly diagnosed and it is plausible that the impact of the Academy may be greater.
The field notes revealed that one of the largest challenges for the family caregivers related to medications. Some parents were giving the rescue medication (bronchodilator) as if it were the controller medication and many parents were not prepared for how to respond to an asthma attack. Two of the parents were unable to tell us what the names of the medications their child was taking, yet their children had asthma for years. This insight validates the need for more educational interventions for family caregivers of newly diagnosed children as well as those whose children who have had asthma for years.
The majority of the caregivers identified as low-income families. Considering the implications of social determinants of health, it is recognized that these families face many obstacles and challenges. Through this feasibility study, we were able to determine that most of the families (all but one) were able to successfully receive the remotely conducted education session or attend the telehealth visit. Some participants used their computers and others used their smartphones. Based on this finding, additional interventions involving use of mHealth or virtual/remote education warrant exploration as a potential solution to supplement family caregiver education for children with chronic diseases or complex needs.
4.1. Comparison to research
The study findings resonate as well as conflict with previous research. The telehealth intervention was successful in improving caregiver outcomes as demonstrated in previous research (Armoiry et al., 2018; Bian et al., 2019; Hooshmand and Foronda, 2018; Lin et al., 2020). On the other hand, the intervention showed no significant change in caregivers of children with asthma's anxiety levels or sleep. It is possible this lack of change could be because of the timing of the intervention (later rather than newly diagnosed), lack of instruments used that relate specifically to unique context of asthma, and due to the single intervention. Developing interventions to support families over time (i.e. longitudinally) are recommended.
4.2. Limitations
This study was limited in several ways. A convenience sample from a single site was used and the sample size was small limiting generalizability. All of the participants happened to be female and most were low-income. However, the goal of this pilot study was to assess feasibility and acceptability of this novel intervention providing students with telehealth experiences to serve the community. Further, one of the telehealth visits had to be transitioned to a telephone call due to the participant having technology issues related to limited cell phone data. However, the remaining telehealth visits were conducted rather smoothly from participants’ phones and computers, indicating feasibility with a low-income population. Of note, when a student did not know the answer to a question or was unable to fully answer a participant's question, the faculty member chimed in to assist. Therefore, this model is only effective when there is a faculty member supervising and participating.
Further, as the majority of participants did not indicate having sleep problems, anxiety or depressive symptoms as is indicated in the literature, it is possible that there was bias related to social desirability. If the population had been symptomatic with anxiety, depression or sleep disorders, perhaps the intervention may have demonstrated more impact. It is possible that the measures used may have been too broad to detect subtle change. For example, instead of using a measure for general anxiety, it may have been more appropriate to use a measure about anxiety related to asthma. These revelations from this pilot study will be helpful to refine future work.
4.3. Recommendations
As with any pilot study, important lessons were learned. The authors suspect that participants may have demonstrated decreased anxiety levels if the sample had been larger or took a survey more specific to asthma-related anxiety (as opposed to general anxiety). The Asthma Academy was offered in English and Spanish, but due to the unique setting where the study was conducted, a future iteration in Creole is recommended. Researchers wishing to replicate the Asthma Academy should take into consideration the populations that are most vulnerable/high-risk and linguistically and culturally tailor the interventions.
Based on the evidence from this study, nurses should be prepared to provide additional information about medication management, provide an asthma action plan template, and consider offering simulation-based learning experiences to support family caregivers. As some caregivers had a reverse understanding of which medication served as a controller medication and which medication served as a rescue medication, nurses should be prompted to assess and re-educate caregivers on these specifics. Additionally, caregivers struggled with understanding how many doses of Albuterol to give and how long to wait in between doses. Education regarding the timing of medication administration during an asthma exacerbation is critical. Providing simulation-based learning experiences for family caregivers may be a potential solution. Further, it may be key to explain in detail to caregivers how the asthma controller medications require time and adherence over months for them to become effective. With this understanding, caregivers may be more apt to give their child medications long term.
Although this content was covered in the Asthma Academy, caregivers continued to ask questions regarding noticeable signs and symptoms to indicate that there is an emergency. Nurses working with caregivers should emphasize signs of distress in the child such as coughing, retractions, tracheal tugging, rapid breathing, “belly” breathing, mental status changes, and poor skin coloration (as a late sign). Caregivers may benefit from additional education surrounding when to go to the doctor's office, urgent care center, emergency department, or when to call 911. When educating about healthcare navigation and decisions of where to go in a crisis, it is important to consider the family's situation including social determinants of health, for example, such as transportation issues.
The Asthma Academy presents a novel model for academic and clinical partners to work together to attend to the current gap of inadequate family caregiver education. Leveraging the resources of doctoral nursing students using telehealth to connect them with families in the community may be a model that serves caregivers of family members with other chronic disease foci. This model may be applied with students over time to foster longitudinal clinical learning experiences with their patients. Nurse-led telehealth initiatives may hold an important place in the future to improve patient and family caregiver education.
5. Conclusion
Asthma is a chronic condition that not only affects millions of children, it affects those who are responsible and care for these children. Being a parent of a child with asthma can invoke stress and uncertainty. Many caregivers are uncomfortable with how to manage their child's asthma, yet the healthcare system is ill-equipped to provide the caregiver education needed. Family caregiver well-being predicts child outcomes. The model presented in this study – leveraging doctoral students to provide education and support to caregivers of children with asthma in the community through use of virtual education and telehealth- holds potential to positively impact both caregivers and their children and serves as an exemplar academic-practice partnership providing meaningful services to vulnerable populations. Nurses and nursing students may fill an important gap, that of inadequate family caregiver education, through supplementing their clinical experiences with telehealth to connect with their communities.
Conflicts of interest
None.
Acknowledgments
The activities reported here were supported (in part) by the Josiah Macy, Jr. Foundation, United States, and a Provost's Award from the University of Miami, United States.
Footnotes
ClinicalTrials.gov Identifier: NCT04132297 / Date of First Recruitment: February 24, 2021.
Contributor Information
Cynthia Foronda, Email: c.foronda@miami.edu.
Juan M. Gonzalez, Email: j.gonzalez48@miami.edu.
Kenya Snowden, Email: ksnowden@miami.edu.
Susan Prather, Email: slp52@miami.edu.
Catalina Majilton, Email: Cxm1391@miami.edu.
Alejandra Weisman, Email: a.weisman1@miami.edu.
Sandra Parmeter, Email: Sparmeter@miami.edu.
Angela Herrera, Email: amh363@miami.edu.
Karina A. Gattamorta, Email: k.alvarez1@umiami.edu.
Juan E. Gonzalez, Email: jxg1695@miami.edu.
Charles Downs, Email: cxd826@miami.edu.
Mary Hooshmand, Email: mhooshmand@miami.edu.
Monica Cardenas, Email: MSotolongo1@med.miami.edu.
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