Tracheostomy decision-making for children with medical complexity: What supports and resources do caregivers need?

Abstract

Objectives

Caregivers of children with medical complexity (CMC) face decisions about life-sustaining interventions, such as tracheostomy. Our objective is to describe the support needs of caregivers of CMC and the resources they use surrounding tracheostomy decision-making (TDM) for their children.

Methods

This qualitative study, conducted between 2013 and 2015, consisted of semi-structured interviews with 56 caregivers of 41 CMC who had tracheostomies, and 5 focus groups of 33 clinicians at a tertiary care children’s hospital. Participants were asked about their perspectives on the TDM process. Qualitative data were transcribed, coded, and organized into themes.

Results

Caregivers used five domains of resources surrounding TDM: (1) social network including extended family members, friends, and clergy; (2) healthcare providers including physicians, and nurses; (3) other parents of children with tracheostomy; (4) tangible materials such as print materials, videos, tracheostomy tubes, mannequins, and simulation labs; and (5) internet including websites, social media, and online health communities. Caregivers used these resources for (1) decision-making, (2) becoming knowledgeable and skillful about child’s diagnosis, tracheostomy and home care, and (3) emotional and spiritual well-being. Caregivers agreed that they received enough support, but there were gaps. Clinicians were knowledgeable about these resources, discussed social network and internet less often than the other domains, and identified gaps in supporting caregivers.

Significance of Results

Caregivers’ need for support and use of resources surrounding tracheostomy placement for CMC extended beyond decision-making, and included becoming knowledgeable and getting emotional/spiritual support. Healthcare providers exploring these resources with caregivers could improve the quality of TDM communication.

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. 2011). 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. 2001). CMC are hospitalized often and for long periods, and have high readmission rates (Simon et al. 2010, Berry et al. 2011). Parents/Caregivers of children with medical complexity (CMC) often face decisions about life-sustaining treatments including tracheostomy (Jonas et al. 2021).

In the U.S., 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 et al. 2016, Muller et al. 2019). Placement of tracheostomy in CMC has significant consequences for the health of the child including death and hospitalizations.(Berry et al. 2009, Edwards et al. 2010, McPherson et al. 2017), and for caregivers of CMC as well (Callans et al. 2016). 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 healthcare providers’ roles - from this project (Nageswaran et al. 2018, Gower et al. 2020, Nageswaran et al. 2020), 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. 2007) in Appendix A and described previously (Nageswaran et al. 2018, Gower et al. 2020, Nageswaran et al. 2020). 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 six 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 (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 (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 et al. 2018), 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

Characteristics of children are presented in Table 1. 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]

Characteristic	Median (Range) or Number (%)
Age*	2.5 years (5 months – 18 years)
Boys	21 (51%)
Girls	20 (49%)
White	29 (71%)
Black	10 (24%)
Multiracial	2 (5%)
Hispanic	7 (17%)
Health insurance
Medicaid	31 (76%)
Private	7 (17%)
Both	3 (7%)
Annual household income
< $20,000	17 (42%)
$20,001 to $40,000	12 (29%)
$40,001 to $80,000	11 (27%)
Missing	1 (2%)
Primary diagnostic categories
Prematurity	6 (15%)
Anoxic brain injury	5 (12%)
Myopathy, muscular dystrophy	7 (17%)
Neurological malformations	4 (10%)
Lung or heart defects	4 (10%)
Genetic conditions	8 (20%)
Malignancy	1 (2%)
Other	6 (15%)
Age at tracheostomy	10 months (4 days – 17 years)
Duration of tracheostomy§	1.5 years (2 months – 5 years)
Tracheostomy only	25 (61%)
Tracheostomy and chronic mechanical ventilation	16 (39%)
Decanulated prior to interview	8 (20%)
Decanulated and 2nd tracheostomy	1 (2%)
Died prior to interview	3 (7%)

^*date of birth to date of interview/ date of death

^§date of tracheostomy to date of interview/ date of decannulation/ date of death

Table 2.

Participant Characteristics

Characteristic	Median (Range) or N (%)
Caregivers who participated in 41 interviews [n=56]
Age	36 years (19 years – 53 years)
Relationship to the child
Mother	38 (68%)
Father	13 (23%)
Grandmother	3 (5%)
Grandfather	1 (2%)
Grandmother figure	1 (2%)
Education
< High School	9 (16%)
High School	16 (29%)
Some College	11 (20%)
College	17 (30%)
Missing	3 (5%)
Clinicians who participated in 5 focus groups [n = 33]
Non-physician focus groups (3)
Nurse	11 (33%)
Social Worker	3 (9%)
Respiratory Therapist	1 (3%)
Physical Therapist	1 (3%)
Speech Therapist	1 (3%)
Care Coordinator	1 (3%)
Physician focus groups (2)
Otorhinolaryngologist	2 (6%)
Pediatric Pulmonologist	2 (6%)
Pediatric Intensivist	4 (12%)
Neonatologist	3 (9%)
Pediatric Hospitalist	4 (3%)
Female	26 (79%)
Male	7 (21%)
Age category, in years
≤ 36	5 (15%)
36 to 45	15 (45%)
≥ 46	12 (36%)
Missing	1 (3%)
Years of service
<10 years	10 (31%)
10 to 20 years	11 (33%)
>20 years	11 (33%)
Missing	1 (3%)

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.

Table 3.

Resources helpful for caregivers during the tracheostomy decision-making process: Illustrative quotes of caregiver and clinician perspectives

Domain	Caregiver Quote	Clinician Quote
1. Social network (e.g. spouses, other family members, friends, and clergy)	D03: At first I didn’t want to talk to nobody about it, really…I talked to Mom and that was the main one that I have always talked to on decisions…but that was the hardest thing for me to do, was to make any decision.	Nurse B05/ FG1: Another thing you can suggest is they can bring a family member that is in the medical field or that is not emotionally so distorted that can help them, that can listen with them. That’s what some of our families did…
2. Healthcare providers	D01: He was [child]’s primary nurse because he always had her. And he was always good about answering questions for us as well. He helped me get what I needed, like the confirmation of could she be extubated. He was the one that kind of pushed that. Confirmation for me to know, ‘Okay, she does need a trach.’	Physician B28/ FG4: There’s a lot that they [palliative care] provide because they develop a relationship…we’re talking about that relationship of advocacy, the palliative care team really does that well. So when the patients come into the ICU and the palliative care team comes in, it almost creates - I mean it’s a security blanket for them.
3. Other parents/caregivers of children with tracheostomy	D11: She [parent of a child with tracheostomy] took me to her room and she showed me her little boy… she talked to me. I believe we did talk a little bit about the trach. She helped me out a lot with everything… with the trach and the nursing, she could tell me about that stuff, because she’d been there… She was helpful.	Physician B19/ FG3: We actually had a situation from the PICU where the family was completely terrified of a trach…We were able to say, “Hey, why don’t you come talk to this mom in our trach/vent clinic,” and they could see the child. That really seemed to be the tipping point for them…other parents getting involved, from my experience, has been very helpful for that parent trying to make that decision…
4. Tangible (e.g. print materials, videos, tracheostomy tubes, mannequins, simulation lab)	D35S: When we came to a decision to agree to have it and then we learned about it….They gave us some papers and books and some specialists from that area came and give us some conversation and lay out all the information about it. That’s when we learn about it.	Nurse B09/ FG1: …maybe having a visual or a video, something that they can take the time and watch and absorb all the information about the technical parts of the trach and what it looks like and how it works. Not just the emotional part of it but the actual education of technical parts of it so they can understand what we’re talking about.
5. Internet (e.g. website, social media, online health community)	D21: we have talked to other moms. There is a community of us, there is a <diagnosis> Moms community on Facebook, so we all talk to each other about the kids.	Physician B20/ FG3: I think there’s a Facebook page - saw something today…something about “moms with babies with trachs.” It’s private so you have to ask to be let in. This mom had found that very helpful.

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…”

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 (HCPs):

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 printout 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 non-physician 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. 2013, Bray et al. 2017). 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. 2015). Yuen et al. successfully used trained parents as peer supporters to prepare parents before discharging children with tracheostomy from the hospital (Yuen et al. 2021). 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. 2015). 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. 2016), 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. 2017), as parents find these connections helpful (Meyer-Macaulay et al. 2021). 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. 2020). 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. 2021). Another study showed that use of standardized processes when transitioning children with tracheostomy from hospital to home reduced subsequent emergency room visits and hospitalizations (Baker et al. 2016). 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. 2017, Meyer-Macaulay et al. 2021). Bryan et al. reported that 93% of parents surveyed used internet for health information for their children (Bryan et al. 2020). 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. 2020). 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. 2017). 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. 2020). 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. 2017). HCPs may be reluctant to engage with parents through internet/social media for fear of violating professional boundaries (De Clercq et al. 2020). Parents of children with tracheostomy use social media for gaining knowledge and for getting medical advice (Huestis et al. 2020). 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 et al. 2021). 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.

Abbreviations:

CMC

children with medical complexity

TDM

tracheostomy decision-making

HCP

healthcare providers

WFHS

Wake Forest Health Sciences

BCH

Brenner Children’s Hospital

Appendix A. Consolidated Reporting of Qualitative Studies (COREQ) Checklist¹

Domain 1: Research team and reflexivity
Personal Characteristics
1. Interviewer/facilitator	Shannon Golden, MA conducted the English interviews and focus groups. Aura Rosado, MSW conducted the Spanish interviews.
2. Credentials	Savithri Nageswaran and W. Adam Gower are physicians; Shannon Golden is a medical anthropologist; Nancy King is a bioethicist; and Aura Rosado is a social worker.
3. Occupation	Savithri Nageswaran, W. Adam Gower, and Nancy King are faculty in academic medical schools. Shannon Golden is a senior research associate. Aura Rosado is the care coordinator of the palliative care/complex care program.
4. Gender	Savithri Nageswaran, Nancy King, Shannon Golden, and Aura Rosado are cis-females. W. Adam Gower is cis-male.
5. Experience and training	Savithri Nageswaran has experience conducting qualitative studies. Shannon Golden has extensive experience in qualitative data collection, analysis, and reporting. W. Adam Gower and Nancy King have subject matter expertise. Aura Rosado has prior experience interviewing Spanish-speaking caregivers of children with medical complexity.
Relationship with participants
6. Relationship established	Shannon Golden has conducted interviews of 3 caregivers of 3 children for a previous qualitative study. Aura Rosado provided care coordination services for 3 of the 6 children whose caregivers she interviewed. Shannon Golden did not have relationships with participants of the focus groups.
7. Participant knowledge of the interviewer and focus group facilitator	The research was explained to the participants prior to the interview and focus group as part of the informed consent process.
8. Interviewer and focus group facilitator characteristic	Interviewer and focus group facilitator characteristics are described above.
Domain 2: Study Design
Theoretical Framework
9. Methodological orientation and Theory	The paper has a phenomenological orientation and an analysis process consistent with thematic content analysis.2
Participant selection
10. Sampling	All children were identified as having had a tracheostomy from 3 sources: 1) i2b2 query of hospital administrative database, 2) a list maintained by the otorhinolaryngology department, and 3) children referred to the palliative care/complex care program. Only children meeting the inclusion criteria were included in the final sample. Healthcare providers were identified by their specialties within the pediatric hospital.
11. Method of approach	Potential participants for interviews were recruited by telephone contact. Focus group participants were recruited by email or in-person.
12. Sample size	56 caregivers of 41 children participated in the interviews. 33 healthcare providers participated in 5 focus groups.
13. Non-participation	8 caregivers of 8 children with medical complexity did not participate. Of these, 6 refused to be interviewed for various reasons, and 2 cancelled scheduled interviews. We did not calculate non-participation for focus groups.
Setting
14. Setting of data collection	Of the 41 interviews, 33 were conducted in the homes of children, 5 in the hospital; 1 in parent’s office and 2 in restaurants. All focus groups were held at conference rooms in the children’s hospital.
15. Presence of non-participants	Children were present in most interviews, but did not participate in the interviews. A notetaker assisted with all focus groups.
16. Description of sample	Sample characteristics are described in Table 1.
Data Collection
17. Interview/ focus group guide	An interview guide for caregivers (see Appendix B) was developed based on a conceptual framework of clinician- provider interaction in the tracheostomy decision-making process. The guide was revised as interviews progressed. The guide was not pilot tested. Focus group guides for clinicians (Appendices C and D) were developed based on a conceptual framework drawn from caregiver interviews as it relates to clinical interaction during the tracheostomy decision-making process.
18. Repeat interviews	Repeat interviews were not carried out.
19. Audio/visual recording	Interviews and focus groups were audio-recorded
20. Field notes	Field notes were completed by the interviewers/ focus group facilitator after the interviews/ focus groups.
21. Duration	The median length of interviews was 66 minutes (range: 35 to 175 minutes). The median length of focus groups was 68 minutes (range 59 to 92 minutes).
22. Data saturation	For interviews, the list of potential eligible participants was exhausted, resulting in 41 completed interviews. Because there was variability in children’s’ diagnoses, ages, survival, decannulation, and socioeconomic status, we wanted to be sure to get the most comprehensive picture of the pediatric tracheostomy experience possible. We reached data saturation on most themes prior to the final few interviews, but completed those interviews for the sake of exhausting our list. For Spanish-speaking subjects, their data was very similar to English-speakers, and very few in number. We feel they align thematically with the English-speaking data, contributing to data saturation. For clinicians, our goal was not to saturate focus group data, however to help us better understand the caregiver experience using clinical perspectives – triangulation. We achieved this.
23. Transcripts returned	Transcripts were not returned to participants for comment and/or correction
Domain 3: Analysis and findings
Data analysis
24. Number of data coders	Four data coders coded the data independently (2 per transcript) and reconciled differences in coding through discussion.
25. Description of the coding tree	A codebook was developed inductively and revised for accuracy as coding progressed. The final interview codebook had 19 codes; one code had 3 sub-codes and another had 4 sub-codes. For focus groups, a separate codebook was developed. It had 12 codes.
26. Derivation of themes	All themes were derived from the data.
27. Software	ATLAS.ti v.7 was used for data management and analysis
28. Participant checking	Participants did not provide feedback on the findings
Reporting
29. Quotations presented	Participant quotations are presented throughout the manuscript text. Each quotation is identified by participant number.
30. Data and findings consistent	Data that emerged related to this topic are summarized as themes.
31. Clarity of major themes	Three major themes related to this support needs and resources used by parents/caregivers are presented in the Results.
32. Clarity of minor themes	Subthemes are described within the major themes.

^1.Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–357.

^2.Green J, Thorogood N. Qualitative methods for health research. 4th ed. Los Angeles: SAGE; 2018.

Appendix B. Caregiver Interview Questions

1. Thinking back, tell me about the first time someone talked to you about having this procedure for your child.

2. Who was involved in the initial discussion, and where did the discussion take place?

• Probe: How did you feel about the physical setting?

3. What was your reaction to this discussion?

• Probe: What were your initial concerns about having this procedure for your child (what was important to you at that time)?

• Probe: How did the doctors address these concerns?

• Probe: How was the subject matter communicated to you?

• Probe: What could have gone better?

4. What other options were you presented? By whom?

• Probe: What did you think of those options?

5. Throughout the decision-making experience, who played a key role? Why?

• Probe: Who referred you to them?

6. At the time, who, if anyone, did you avoid discussing this with? Why?

• Probe: Who were the people who did not support your decision?

7. The people who advised you – how did they impact your decision?

8. What other resources did you use to help you make the decision? (By resources, I mean things like the internet, books or reading material, other parents)

• Probe: How did you find them? (did you seek them or did they come to you?)

• Probe: Who recommended them?

9. What was the most helpful thing or who was the most helpful person to you in making this decision? Why?

10. What was the least helpful thing or who was the least helpful person to you in making this decision? Why?

11. Now that you know what you do about tracheostomies, how do you feel about the information and advice you received at the time of the decision?

• Probe: Did you receive enough information & support? If not, why?

12. How do you feel now about your decision to give your child a tracheostomy?

13. What are your hopes for your child since the trach was placed?

• Probe: What does the future look like for him/her?

14. In your opinion, how can doctors and healthcare professionals best serve families in situations like yours? Please explain.

• Probe: communication style

15. What do you know now that nobody told you at the time of the decision?

• Probe: What did they tell you to prepare you – what did they say would happen?

16. How did any of your beliefs – your view of the world – play a role in making this decision?

• Probe: In other words, how did your beliefs help you decide?

• Probe: What – if any – were the spiritual beliefs you considered?

17. If you have a pastor, in what ways did he/she help you with the decision making process?

18. Did you talk about your spiritual beliefs with your child’s doctors or nurses when you made this decision – why or why not?

19. Baptist sometimes offers families the services of a chaplain, or pastoral care. Did you use this service? Why/why not?

• If yes, tell me how that came about and how it worked out.

20. How can pastors best serve families in situations like yours?

21. How would you advise a family who was faced with a decision to give their child a tracheostomy?

22. Is there anything else you would like to tell me about your decision to give your child a tracheostomy?

Appendix C. Non-Physician Focus Group Guide

The goal of today’s discussion is to improve the decision-making process related to tracheostomies in children. We would like to discuss the barriers and facilitators to communication and decision-making for both families and providers.

First please help me understand the process:

1. When a patient needs a tracheostomy, how do discussions begin?

• Probe: Who do you engage?

• Probe: When do you approach families?

• Probe: How do you resolve disagreements among the team?

2. What is your role when it comes to discussing tracheostomy-related decisions with parents?

3. What difficulties do you/others face in discussing trach options with families?

• Probe: What gets in the way of good decision-making?

• Probe: What gets in the way of good communication?

4. How are your discussions different for children with reversible conditions and those with neurological impairment?

Scenario #1. Now I am going to share with you a parent experience. Then I will ask for your reaction. Doctors may not like to present things prematurely, but it does help. If I would have known that she would be on a ventilator, I would have been able to prepare myself. They should have told me, “Ok, babies with pulmonary hypertension may need a ventilator.” I didn’t get that, I just got “She has pulmonary hypertension,” and that’s it. I should have had more information (D06)

5. What comments do you have about those statements?

6. Sometimes parents tell us the volume of information they receive about their children’s conditions is overwhelming. How can information be presented without overwhelming parents?

• Probe: What are some strategies to help parents handle or process new information?

• Probe: How much information to provide?

Scenario #2. Here is another parent experience. When we decided to place the trach, the doctor told us, “It’s not the best decision. It’s better that you let her go because she is not going to live long regardless.” They had already talked to us about five times throughout the week. And I said, “It’s not an easy decision, it’s very difficult. You don’t know how we feel.” I was angry because they were pressuring us. I am very grateful to doctors and the job they do, but I think they should be more sensitive when it comes to speaking with the family, and find better ways to say things. (D39)

7. What is your response to that parent’s comments?

8. What are ways providers can best communicate the benefits and harms of a tracheostomy?

• Probe: Is it more helpful to prepare a family for the best outcome or prepare them for the worst? Why?

9. How often do doctors listen to families’ concerns?

• Probe: How do we improve this?

Scenario #3. One parent made a suggestion. She says: Sometimes doctors don’t understand where the parents are coming from. The nurses are the ones who know these parents, and they’re there all the time so maybe doctors should ask the nurses stuff like, “How do they like their information?” and “What have you noticed about them?” (D06)

10. What do you think about her comments?

• Probe: Is this possible or practical? Why or why not?

11. How should nurses and other providers be engaged by doctors to help families with decision making

Scenario #4. I have one more parent experience to share. Dr. Jones wasn’t trying to be insensitive, but to him, this was a very simple thing. I remember his comment was, “Well, it’s only a 15 minute procedure and it’s not a big deal.” And then we were like, “No, no, no. It’s a fifteen minute procedure, but then we are going to have to change our entire lifestyle.” And it was like that concept went completely over his head. I mean he just had absolutely no understanding of how that might affect a family. (D16)

12. How do you feel about what this parent said?

13. How can doctors better understand what life is like for a family with a child with a tracheostomy?

That’s all I have today. Are there any final comments you would like to share before we conclude?

We have discussed a lot today. Thank you so much for your time and your willingness to be part of this group. Before you leave, please be sure to sign for your gift cards.

Appendix D. Physician Focus Group Guide

The goal of today’s discussion is to improve the decision-making process related to tracheostomies in children. We would like to discuss the barriers and facilitators to communication and decision-making for both families and providers.

First please help me understand the process:

1. When a patient needs a tracheostomy, how do discussions begin?

• Probe: When do you approach families?

• Probe: Who (healthcare providers) do you engage?

• Probe: How do you resolve disagreements among the team?

2. What difficulties do you face in discussing trach options with families?

• Probe: What gets in the way of good decision-making?

• Probe: What gets in the way of good communication?

3. How are your discussions different for children with reversible conditions and those with neurological impairment?

Scenario #1. Now I am going to share with you a parent experience. Then I will ask for your reaction. Doctors may not like to present things prematurely, but it does help. If I would have known that she would be on a ventilator, I would have been able to prepare myself. They should have told me, “Ok, babies with pulmonary hypertension may need a ventilator.” I didn’t get that, I just got “She has pulmonary hypertension,” and that’s it. I should have had more information. (D06)

4. What comments do you have about those statements?

• Probe: What are some strategies to help parents handle or process new information?

• Probe: How much information to provide?

• Probe: How can information be presented without overwhelming parents?

Scenario #2. Here is what another parent reported: When we decided to place the trach, the doctor told us, “It’s not the best decision. It’s better that you let her go because she is not going to live long regardless.” They had already talked to us about five times throughout the week. And I said, “It’s not an easy decision, it’s very difficult. You don’t know how we feel.” I was angry because they were pressuring us. I am very grateful to doctors and the job they do, but I think they should be more sensitive when it comes to speaking with the family, and find better ways to say things. (D39)

5. What is your response to that parent’s comments?

6. Is it more helpful to prepare a family for the best outcome or prepare them for the worst? Why?

7. What are the ethical and moral questions you wrestle with when discussing tracheostomies for children with neurological impairment?

Scenario #3. Here are some more comments from parents: All of the doctors were good. They each had their own perspective and how they wanted to do things. Day shift doctors may be thinking one direction of what to do, and then night shift comes on and has a whole different view. That’s why it’s frustrating. Because you’ve got one doctor who wants to do it this way, and one wanting it that way. Some of them wouldn’t listen, some of them did. (D18)

8. How to you feel about what this parent said?

9. How do we reduce variability among doctors?

10. What are the roles, primary team versus specialists?

We had 2 focus groups with non-physician PICU/NICU staff. They told us that the NICU has weekly meetings to discuss long term patients, called CBES. They reported that these CBES are helpful to create a good plan of care and reduce variability.

11. Why or why isn’t this something you think would be helpful in other places such as PICU?

[OK TO SKIP Q12] One nurse also explained that in adult care, there are strict guidelines about when and how long to trach a patient. She said for pediatric care, there aren’t any guidelines.

12. Why is that?

• Probe: What is needed or what would be helpful in terms of guidelines?

Scenario #4. I have one more parent experience to share. Sometimes doctors don’t understand where the parents are coming from. The nurses are the ones who know these parents, and they’re there all the time so maybe doctors should ask the nurses stuff like, “How do they like their information?” and “What have you noticed about them?” (D06)

13. How do you feel about what this parent said?

14. How can nurses and other providers be engaged by physicians to help families with decision making?

Nurses told us that providers sometimes meet as a group to resolve their differences before meeting with the family about tracheostomy decision to avoid giving conflicting viewpoints.

15. What are your thoughts about such meetings?

16. That’s all I have today. Are there any final comments you would like to share before we conclude?

We have discussed a lot today. Thank you so much for your time and your willingness to be part of this group. Before you leave, please be sure to sign for your gift cards.