Introduction
Children with medical complexity (CMC), also known as children with life-limiting illnesses, medically fragile children, or technology-dependent children, are a heterogeneous group with many different medical conditions (Cohen et al., Reference Cohen, Kuo and Agrawal2011). These conditions include genetic disorders, extreme prematurity, perinatal ischemic encephalopathy, trauma, infection, degenerative disorders, and malignancy. Whereas these conditions once inevitably led to death in the near term, CMC are living longer because of advances in technology (Feudtner et al., Reference Feudtner, Hays and Haynes2001). CMC are hospitalized often and for long periods, and have high readmission rates (Simon et al., Reference Simon, Berry and Feudtner2010; Berry et al., Reference Berry, Hall and Kuo2011). Parents/Caregivers of CMC often face decisions about life-sustaining treatments including tracheostomy (Jonas et al., Reference Jonas, Scanlon and Bogetz2021).
In the US, there is a shift in the indication for tracheostomy for children from being offered only for conditions that are reversible, to now include conditions that are life limiting. CMC constitute a larger proportion of children for whom tracheostomy is offered compared to several decades ago (Campisi and Forte, Reference Campisi and Forte2016; Muller et al., Reference Muller, Mamidala and Smith2019). Placement of tracheostomy in CMC has significant consequences for the health of the child including death and hospitalizations (Berry et al., Reference Berry, Graham and Graham2009; Edwards et al., Reference Edwards, Kun and Keens2010; McPherson et al., Reference McPherson, Shekerdemian and Goldsworthy2017), and for caregivers of CMC as well (Callans et al., Reference Callans, Bleiler and Flanagan2016). Hence, supporting families when they make decisions about tracheostomy for their CMC is an important role for healthcare providers caring for these children. Yet, very little is known about how best to support caregivers during the tracheostomy decision-making process (TDM). To address this gap, in a qualitative study, we interviewed parents/caregivers of CMC and conducted focus groups of healthcare providers (HCPs) about TDM for CMC. While we have published on different aspects of TDM — decisional satisfaction, religion and spiritual factors, and HCPs' roles — from this project (Nageswaran et al., Reference Nageswaran, Golden and Gower2018; Gower et al., Reference Gower, Golden and King2020; Nageswaran et al., Reference Nageswaran, Banks and Golden2022), the objective of this paper is to describe the support needs of and resources used by caregivers of CMC when making decisions about tracheostomy and preparing for home care of their children.
Methods
This study was conducted at Brenner Children's Hospital (BCH), the tertiary care children's hospital of Wake Forest Health Sciences (WFHS) in western North Carolina, and involved: interviews with parents/caregivers of CMC (referred to as “caregivers”) who had a tracheostomy, and focus groups of HCPs experienced in pediatric TDM (referred to as “clinicians”). This study has a phenomenological orientation. Methodological details are provided in the Consolidated Reporting of Qualitative Studies Checklist (Tong et al., Reference Tong, Sainsbury and Craig2007) in Supplementary Appendix A and described previously (Nageswaran et al., Reference Nageswaran, Golden and Gower2018, Reference Nageswaran, Banks and Golden2022; Gower et al., Reference Gower, Golden and King2020). WFHS Institutional Review Board approved the study. Informed consent was obtained from each participant.
Interviews
Caregivers were eligible if their children were <18 years old, had a chronic condition, defined as health condition that lasted or was expected to last ≥12 months, had the tracheostomy performed ≤5 years before the interview, and were current patients at BCH or patients at time of death. Caregivers had to be ≥18 years old, English- or Spanish-speaking, and the primary caregiver. Bereaved caregivers were included except within 6 months of the child's death. Children were identified from the hospital's administrative database using procedure codes for tracheostomy, a list maintained by the otorhinolaryngology department of children who received tracheostomy, and a list of children referred to the pediatric palliative/complex care program. Caregivers were recruited by the research associate (SG) through telephone contact; Spanish-speaking caregivers were recruited by the bilingual social worker of the palliative/complex care program.
Between December 2013 and November 2014, 41 in-depth, semi-structured interviews (35 English; six Spanish) of 56 caregivers were conducted by trained interviewers. An interview guide was developed to elicit information about the TDM process (Supplementary Appendix B) and was revised for relevance as interviews progressed. A $30 incentive was provided to participants.
Focus groups
Clinicians were eligible if they worked in the neonatal or pediatric intensive care or step-down units, and were involved in the TDM process. We invited clinicians through three sources: (1) physicians (neonatologists, and pediatric hospitalists, intensivists, pulmonologists, and otorhinolaryngologists) via email, (2) flyers distributed on the pediatric floors, and (3) personal invitation of clinicians who were identified in caregiver interviews. Five focus groups were conducted with 33 clinicians between September and October 2015; two groups included physicians only (seven and eight participants); and three groups included nurses, social workers, a care coordinator, and a respiratory, speech and physical therapist (nine, five, and four participants). Focus groups were moderated using guides designed to elicit clinician perspectives on TDM (Supplementary Appendices C and D). Focus groups were conducted after caregiver interviews were complete. The focus group guide comprised questions similar to those we asked caregivers, as well as vignettes for discussion based on caregiver interviews. Participants received food and $25 incentives.
Qualitative data analysis
Interviews and focus groups were audio-recorded and transcribed verbatim. Spanish transcripts were translated into English. Separate interview and focus group codebooks were developed inductively and revised for accuracy as coding progressed. We used ATLAS.ti (v.7) software (2013) for data management and analysis. All four investigators coded the first two transcripts as a group to ensure the consistent understanding and application of codes and their meanings. For the remaining transcripts, two investigators independently coded each transcript, then compared them and reconciled coding differences to arrive at a consensus. Coded data were summarized by an investigator and then verified by a second investigator. Caregiver interviews were coded prior to focus group conduct. This sequential design allowed us to both probe deeper into the phenomenon while corroborating or negating our developing findings during ongoing analysis (saturation and triangulation). During synthesis, we compared and contrasted caregiver and clinician data. Using thematic content analysis (Green and Thorogood, Reference Green and Thorogood2018), investigators identified and verified themes by their prevalence and salience across datasets.
Quantitative data
Child-level data including diagnosis, dates of tracheostomy, birth and death, and insurance type were abstracted from medical records. Before the interviews, caregivers completed surveys eliciting demographic information. Before focus groups, clinicians completed surveys eliciting age categories and years of service.
Results
The characteristics of children are presented in Table 1. The characteristics of caregivers and clinicians are presented in Table 2. Qualitative results are presented below. Three themes, related to the resources and supports that caregivers needed in the tracheostomy decision-making process, were identified.
Table 1. Characteristics of children [n = 41]
a Date of birth to date of interview/date of death.
b Date of tracheostomy to date of interview/date of decannulation/date of death.
Table 2. Participant characteristics
Theme 1: Caregivers described five different fundamental resource domains that did help, or would have helped them, to address their needs surrounding TDM
Support of all kinds was important to caregivers since the TDM process was an emotionally charged experience for them. Caregivers identified areas where support was needed: (1) decision-making, (2) becoming knowledgeable and skillful about child's diagnosis, tracheostomy, and home care, and (3) emotional and spiritual well-being. These needs culminated in tremendous caregiver stress. Caregivers used five domains of resources to meet their support needs (illustrative quotes in Table 3) during TDM.
1) Social network: Spouses, extended family members, friends, and clergy helped in the TDM process and provided emotional support. Family support was variable. Some did not have any family member with whom they could discuss TDM. While most often parents made the decision together, some mothers mentioned that fathers did not agree to the tracheostomy initially. Single mothers sometimes did not involve the father or have the father's support at all.
D18: “It was hard because I had to make the decision on my own. I contacted their dad and tried to talk to him about it, but he wasn't much help. He walked out when I was three months pregnant with her and he's not around a whole lot … I asked him to come down there and be with us through it, and he wouldn't, so I had to make the decision on my own … ”
Table 3. Resources helpful for caregivers during the tracheostomy decision-making process: illustrative quotes of caregiver and clinician perspectives
Caregivers especially appreciated emotional support from their social network, which they described as “comforting,” “reassuring,” “encouraging,” “uplifting,” and “positive.” Caregivers frequently mentioned their mothers as a resource for decision-making and emotional support. In some cases, caregivers chose not to discuss with family or friends about their child's condition or tracheostomy decision. Some were frustrated with questions from their social network about their child's health. Family support systems were considered important, but were not available for some.
D20: “Because my family — it was like when I found out something was wrong with my baby, everybody was like cryin’ all the time, my brother, askin’ me stuff all the time. [Child's] daddy was breaking down …. I cried to myself. I didn't want nobody seeing me. It was like I had to be strong for everybody, which people should have been kinda there for me…”
2) Healthcare Providers (HCP): Many different HCPs — doctors (intensivists, otorhinolaryngologists, pulmonologists), nurses, social workers, supportive care teams (e.g., palliative care) in the hospital, and community providers including home health nurses helped by providing information and resources. Some caregivers specifically mentioned the advocacy of their primary-care physicians during TDM. Support from clinicians was helpful for reassurance, confidence, and learning especially when familial support was lacking. Hospital nurses helped prepare parents for home care of children.
D24: “The nurses did a really good job training me how to suction, how to clean, how to change the trach. I felt really comfortable just within the first three or four days.”
3) Other parents of children with tracheostomy: Caregivers found interaction with other parents of children with tracheostomy to be valuable. Seeing another child with a tracheostomy was helpful, as many caregivers had no prior experience with tracheostomy. Connection with other parents occurred in the hospital, community (e.g., school, church, Ronald McDonald House), or on the internet; some of these connections were initiated by HCP in the hospital or home, and others by caregivers themselves. Some families maintained long-term relationships as a result of this interaction. In hindsight, many caregivers said they would like to advise parents considering tracheostomy for their children to seek counsel from other parents who already experienced the TDM process. Many already served as a resource or mentor to other parents; some were willing to be a support and share what they learnt during the TDM process.
D34: “I became a NICU Mommy Mentor … I never realized how much support you could literally get just when you got a bunch of women in the same situation.”
Not all caregivers received support from other parents — some were not connected with or did not have the opportunity to meet other parents; some chose not to meet other parents, especially if their children did not have the same diagnoses. These caregivers found it hard to compare situations because diagnoses and disease progression were different for each child regardless of tracheostomy status.
D15: “ … not everyone's situation is the same, so, I could have gotten an idea from them, like ‘Oh this and that,’ but I wanted to kind of do it myself since I was going to be the main one. And I wanted to focus on what her needs would be specifically and not be distracted by maybe someone else's condition, how good it was, their setup, their nurses, their home, and you know, mine might not have compared … ”
4) Tangible materials: Caregivers named print materials, videos, actual tracheostomy tubes, mannequins, and training in simulation labs as helpful. However, use of these materials was not reported by all caregivers. Materials were favored when they were provided in caregivers’ first language (English or Spanish). It was often unclear whether these tangible materials were assisting with decision-making, learning about diseases/diagnoses, or tracheostomy care.
5) Internet: All English-speaking caregivers mentioned the internet as a resource. General internet research (“Googling”) to understand medical terms, diagnosis or child's health condition, tracheostomy, and to seek resources available to care for their children were helpful in the TDM process. Caregivers also named specific websites (e.g., WebMD, Aaron's Tracheostomy) and YouTube to learn about tracheostomy care. Caregivers connected with other parents through membership in social media groups (especially Facebook) related to certain diagnoses or for children with tracheostomy (“Moms with Trach Babies” group), and found these connections valuable. Some received information and other resources (e.g., “care packages”) from these online groups maintained by disease-specific foundations. Facebook was also used by caregivers to communicate with their social network about their child's condition, and to help fundraise for their child's care. None of the Spanish-speaking caregivers discussed researching via the internet; one said that a friend did the research and another said they started a GoFundMe webpage to raise money for their child's care. Some caregivers said that HCP recommended specific websites, but this was not consistent. For the most part, they did the research by themselves. Even if HCP gave them all the information, many reported doing their own research. Caregivers acknowledged that information on the internet might be scary, overwhelming, or inaccurate: “it's not been my friend the entire time, but … it helped a lot.” Some did not have the time to get information from the internet during TDM.
Theme 2: Caregivers reflected that while they used their resources to receive enough overall support in several areas surrounding TDM, there were gaps in that support
Overall, caregivers described resources to be helpful. These five resource domains were inter-related. For example, HCP provided tangible materials, internet resources and connected caregivers to other parents. Another example was caregivers finding other parents as a resource through their research on the internet.
D06: “They [HCPs] showed me a child [with a tracheostomy] and they gave me a print-out on some information and showed me some pictures and asked me to go look at some pictures. But I actually got to see a child … It wasn't what I expected or wasn't as bad as I thought it would have been.”
D04: “ … since she's been born, my life has been involved in finding what I can do to help her, so I spent a long time on the internet talking to other families that have what she has.”
In general, caregivers used these resources and received the support they needed surrounding decision-making. However, caregivers mentioned gaps in the resources and offered suggestions for improving the quality of support:
D18: “I think maybe just a pamphlet that would give you websites like that you could specifically go to that would give you more information about it, or maybe like a website that you could go on and read other people's stories that have went through it. Or even if they could set up a meeting with another family that did go through it that could talk to you. You would hear their perspective and how it's been on them.”
D38: “It was good advice, although I think it could be better with other materials that can give a better idea of how all this works. Perhaps videos or if there are people who are willing to share their experiences perhaps in a video that one could have access to that information.”
Theme 3: Clinicians were knowledgeable about available resources to support parents, and facilitated their utilization by parents before tracheostomy and in preparation for home care post-tracheostomy
During clinician focus groups, participants expressed similar support needs of parents, and spoke knowledgably about the resources available to address those needs (Table 3). Clinicians discussed HCP, tangible resources, and parent-to-parent connections more frequently than social networks and internet as resources. In all focus groups, the helpfulness of connecting parents with more experienced parents was discussed. Often, parent-to-parent connections were initiated by hospital-based nurses, or family support programs embedded in the hospital, but clinicians acknowledged that this did not happen consistently. Some clinicians discussed the negative effect on the doctor–patient relationship because of caregivers connecting with other parents via social media, and considered this as a barrier to TDM.
Physician B25/ FG4: “There are social media groups … where people share their experiences and so people enter these relationships with huge chips on their shoulders that may not even be their own chips, but just being warned. ‘The doctor's gonna try and talk you into this and you don't have to do that. We were able to get this and if you can't get it, call this hospital or come have your baby born at this hospital because they'll resuscitate. They'll do X, Y, and Z.’”
Clinicians stressed the importance of preparing families for home care, but identified many gaps including lack of consistency in preparation. A standardized curriculum for training parents was recommended by nonphysician groups. They also mentioned that resources provided to parents should be individualized to the needs of the families.
Nurse B14/FG2: “I would like to see more education of these babies going home. Like go in a sim lab, what if this happens? I think we don't do enough ….”
Nurse B32/ FG5: “I think we have to find out what their learning style is. Not everyone absorbs information just by talking to them. Do we need to show them a video? Do we need to show them a mannequin? Do we need to get books? We need to figure out what their individual style is for understanding what we're saying.”
Discussion
Our study shows that the need for support for caregivers of CMC surrounding tracheostomy placement for their children extends beyond decision-making, and includes support for becoming knowledgeable and skillful about the child's diagnosis, tracheostomy and home care, and emotional and spiritual well-being. During TDM conversations, HCPs should attempt to learn about parents’ particular preferences, in order to tailor the offer of a comprehensive set of resources and supports to each family's needs. The five domains of resources — social network, HCP, other parents, tangible materials, and internet — identified in our study, could serve as a framework for HCPs in offering individualized resources to parents during TDM.
Caregivers and clinicians alike considered connecting caregivers with other parents of children who have had tracheostomy to be valuable. Structured parent-to-parent peer support programs helped reduce stress in children with disability (Shilling et al., Reference Shilling, Morris and Thompson-Coon2013; Bray et al., Reference Bray, Carter and Sanders2017). In a survey of parents whose children had tracheostomy, a large proportion of those who had the opportunity to meet another family found that experience helpful (McCormick et al., Reference McCormick, Ward and Roberson2015). Yuen et al. (Reference Yuen, Rodriguez and Osorio2021) successfully used trained parents as peer supporters to prepare parents before discharging children with tracheostomy from the hospital. However, in our study, not all caregivers reported being connected to other parents; even if they were connected to other parents, this connection was not always mediated by HCPs. In the McCormick study, nearly half of the respondents desired to meet another family, and yet, did not have the opportunity to do so (McCormick et al., Reference McCormick, Ward and Roberson2015). The challenges associated with HCPs connecting parents to other parents are not known. Some caregivers in our study mentioned that HCPs could not find a parent mentor for them. However, similar to a prior study (Callans et al., Reference Callans, Bleiler and Flanagan2016), caregivers in our study were interested in mentoring other parents with tracheostomy. If face-to-face parent connections are not possible, online health communities might be an alternative approach for parent-to-parent support (Nicholl et al., Reference Nicholl, Tracey and Begley2017), as parents find these connections helpful (Meyer-Macaulay et al., Reference Meyer-Macaulay, Graham and Williams2021). Hospital leaders may need to create policies to foster a culture where other parents are considered an important resource for parents in the pediatric tracheostomy decision-making process.
Caregivers liked training in preparing for home care of their children with tracheostomy. This is consistent with prior studies wherein parents appreciated extensive hands-on training (Mai et al., Reference Mai, Davis and Hamilton2020). Several clinicians in our study, especially nurses, mentioned the potential benefit of a standardized curriculum to prepare parents for home care. In one study, simulation-based training of parents of children with tracheostomy improved their knowledge and tracheostomy care skills (Yuen et al., Reference Yuen, Rodriguez and Osorio2021). Another study showed that the use of standardized processes when transitioning children with tracheostomy from hospital to home reduced subsequent emergency room visits and hospitalizations (Baker et al., Reference Baker, Martin and Thrasher2016). Such a standardized curriculum for parent training could save HCP time and resources in supporting parents.
The internet was an important resource for caregivers surrounding TDM in our study. Prior studies show the ubiquitous use of internet by parents of children with rare disorders and those with tracheostomy to gain knowledge about their child's condition and for parent-to-parent support (Nicholl et al., Reference Nicholl, Tracey and Begley2017; Meyer-Macaulay et al., Reference Meyer-Macaulay, Graham and Williams2021). Bryan et al. (Reference Bryan, Evans and Morishita2020) reported that 93% of parents surveyed used internet for health information for their children. Interestingly, in our study, while all the English-speaking caregivers mentioned internet as a resource, none of the Spanish-speaking caregivers did. This could be because of lack of health information available in Spanish, inadequate access to internet for this population, or cultural factors. However, our study included only six Spanish-speaking caregivers and may not have captured true differences in internet used based on caregiver's language. Disparities in internet use based on health literacy have been reported before (Meyers et al., Reference Meyers, Glick and Mendelsohn2020). Parents’ language as a factor in using internet as a resource is worth further exploration.
In our study, clinicians did not discuss internet as an important resource for parents during TDM. On the contrary, clinicians mentioned the negative effects of internet resource on the doctor–patient relationship. HCPs may not be confident about the quality or applicability of information online (Edwards et al., Reference Edwards, Morris and Nelson2017). In the Bryan et al. study, only one-third of parents surveyed reported that their child's physician was interested in the health information that they obtained online (Bryan et al., Reference Bryan, Evans and Morishita2020). When parents of children with rare diseases were surveyed, 78% shared information about what they learnt from the internet with their HCPs, but only 22% stated that their HCP was “very interested” in that information (Nicholl et al., Reference Nicholl, Tracey and Begley2017). HCPs may be reluctant to engage with parents through internet/social media for fear of violating professional boundaries (De Clercq et al., Reference De Clercq, Rost and von der Weid2020). Parents of children with tracheostomy use social media for gaining knowledge and for getting medical advice (Huestis et al., Reference Huestis, Kahn and Tracy2020). Therefore, HCPs guiding parents during TDM should explore parents’ use of the internet as a resource. Especially since the coronavirus pandemic, the internet has become an indispensable resource, but the amount of misinformation and disinformation it provides has skyrocketed (Topf and Williams, Reference Topf and Williams2021). HCPs can support parents’ use of this resource, perhaps by offering internet resources known to be reliable, offering to vet resources a parent has identified, or providing some basic accurate information sources against which parents can check online and social media information.
Our study has limitations. Data were collected about 6 years ago. Certain resources, especially those on the internet, would now be a more prominent resource. Caregivers’ memory may have affected their ability to recall specific resources used during TDM several years prior to the interview. This is a single-institution study; experiences about resources, especially HCP and tangible materials, may be different in other institutions. Since this is a qualitative study, the frequency of support needs and resources used could not be quantified. Since resource use was not the primary focus of the study, we did not explore all the themes related to this topic. For example, we could not explore the differences between English- and Spanish-speaking caregivers about internet use. These differences warrant further exploration. Finally, our study does not include information from caregivers who chose not to pursue tracheostomy or directly from children.
Conclusion
Our study shows that caregivers have many support needs surrounding decision-making about tracheostomy for their children. We identified five different types of resources to be beneficial to caregivers during TDM. HCPs should assess caregivers’ need for support during TDM conversations and identify resources to meet these needs.
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/S1478951522001122.
Acknowledgments
We thank Ms. Aura Rosado MSW, Care Coordinator, Pediatric Enhanced Care Program, Wake Forest School of Medicine (WFSM) for recruiting and interviewing Spanish-speaking caregivers in this study, and for reviewing the summaries of coded text; Ms. Vanessa Ortiz, Patient Navigator, Pediatric Enhanced Care Program, WFSM for reviewing the summaries of coded text; Dr. Quincy Banks for help with literature review.
Funding
This project was conducted with support from the National Institute of Nursing Research R21NR013272 (PI: Nageswaran). The sponsor played no role in study design, collection, analysis, or interpretation of the data; in the writing of this manuscript or in the decision to submit the manuscript for publication.
Conflict of interest
The authors have no relevant conflicts of interest to disclose.
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