Bereaved Parent Perspectives on the Benefits and Burdens of Technology Assistance among Children with Complex Chronic Conditions

Abstract

Background:

Many children with complex chronic conditions (CCCs) are supported by medical technologies.

Objective:

The aim of this study was to understand bereaved parent perspectives on technology assistance among this unique population.

Design:

Mixed methods design was used to analyze data from the cross-sectional Survey of Caring for Children with CCCs.

Setting/Subjects:

Bereaved parents of children with CCCs who received care at a large academic institution in the United States and died between 2006 and 2015.

Measurements:

Survey items were analyzed descriptively and integrated with thematic analysis of open-response items to identify key themes pertaining to parents' perspectives on technology.

Results:

110/211 (52%) parents completed the survey and at least 1 open-response item. More than 60% of parents had children with congenital/chromosomal or central nervous system progressive CCCs, used technology at baseline, and died in the hospital. A subset of parents recalled making decisions either not to initiate (n = 26/101, 26%) or to discontinue (n = 46/104, 44%) technology at end of life. Parents described both the benefits and burdens of technology. Two themes emerged regarding technology's association with the (1) intersection with goals of care and (2) complications and regret. Within goals of care, two subthemes arose: (a) technology was necessary to give time for life extension and/or to say goodbye, and (b) technology greatly impacted the child's quality of life and symptoms.

Conclusions:

Parents have nuanced perspectives about the benefits and burdens of technology. It is essential to understand parent's most important goals when supporting decisions about technology assistance for children with CCCs.

Introduction

Children with complex chronic conditions (CCCs) have “any medical condition that can be reasonably expected to last at least 12 months (unless death intervenes) and to involve either several different organ systems or 1 organ system severely enough to require specialty pediatric care and probably some period of hospitalization in a tertiary care center.”^1–3 Based on data from a single-center study, over 40% of children with CCCs require medical technologies such as tracheostomies, ventilators, central lines, and enteral feeding tubes chronically to support their basic needs.⁴ However, many of these technologies are associated with substantial morbidity, including the need for frequent hospitalizations and procedures.^5,6 Despite this, many children grow and thrive with the support of medical technology and increasingly there is broader application of technology supports among children with CCCs.^7,8

At end of life (EOL), technology use is prevalent among children with CCCs. Before death, >75% of hospitalized children with CCCs receive mechanical ventilation^9,10 and many receive interventions for uncontrolled symptoms.^11,12 In these situations, parents have to make life-changing decisions about technology assistance for their child, including whether to initiate or discontinue invasive therapies.¹³ Although exceedingly difficult, these situations are not uncommon, as over half of children with CCCs who die in the intensive care unit do so after withholding or withdrawing of life-sustaining therapies.¹⁴

Little is known about how parents of children with CCCs view technology throughout their child's life and at EOL. The aim of this study was to explore bereaved parent perspectives on technology assistance for children with CCCs.

Methods

This mixed methods study reports findings from a cross-sectional survey of bereaved parents of children with CCCs. Study methods have been previously described and are summarized here.^14,15 Eligible parents were English-speaking, lived in the United States, were bereaved for >12 months, and had a child aged 1 month to 35 years who had received care at a large academic pediatric center and died between January 2006 and December 2015. Patients with CCCs were identified using the CCCs definition by Feudtner et al.² Children were grouped according to existing subcategories of CCCs, including those with central nervous system progressive disorders, static encephalopathy, congenital/chromosomal, neuromuscular, and pulmonary disorders.¹⁶ Children with cancer and primary complex congenital heart disease were excluded because we wanted to focus on other understudied populations of children with CCCs.^11,14 Because many young adults with CCCs continue to receive care at pediatric facilities, the age range of our cohort extended up to the 35th birthday.¹⁷ This study was approved by the Institutional Review Board.

Survey instrument

The survey instrument, Caring for Children with CCCs, was adapted from a previously validated instrument used to measure bereaved parent experiences in oncology.¹⁸ The survey consisted of 183-items, including 21 open-response items on care for children with CCCs. Survey items were either yes/no responses or responses on 5-point Likert scales. Open-response items clarified or expanded upon survey items. All 21 open-response items were incorporated in the analysis—including those regarding technology use at EOL (defined as “the time before your child's death when you knew there was no chance for long-term survival and that he or she was going to die. If you do not perceive your child had an ‘EOL care period’ as defined above, please answer these questions about your child's last month of life”) (Table 1).

Table 1.

Survey Items Pertaining to Technology Use at End of Life

	Item
Stem	We would now like to ask you some questions about your child's “end-of-life” period, which refers to the time before your child's death when you knew there was no chance for long-term survival and that he or she was going to die. If you do not perceive your child had an “end of life care period” as defined above please answer these questions about your child's last month of life.
1	In what ways did [your child] suffer and/or benefit [from medical therapies provided during the EOL care period]?
2	During your child's EOL care period, did he or she receive any medical procedure or treatment that was inconsistent with the previously stated wishes of your family?
3	Is there anything you would like to tell us about [the] discussions [regarding medical interventions withheld or withdrawn during your child's EOL care period]?
4	Do you feel that your child's life was prolonged by medical interventions longer than you would have wished?
5	Thinking back, were there any decisions [at EOL] that you regret?

EOL, end of life.

In addition, trained research assistants abstracted demographic information from the child's health record to confirm the child's primary CCC diagnosis, baseline technology assistance (considered “chronic” if used before EOL), age at time of death, and mode of death. Chronic technologies included enteral feeding tubes, respiratory technology (noninvasive positive pressure ventilation [NIPPV]), tracheostomy with/without ventilation, and ventriculoperitoneal shunt. Other technologies considered at EOL included any device or invasive medical intervention, including intubation with mechanical ventilation, central line, dialysis, organ transplant, experimental therapies, and extracorporeal membrane oxygenation. In cases where it was difficult to determine this information from the health record, a member of the study team (D.D.) adjudicated. Duration of the child's primary CCC illness, location of child's death, and parent information, including whether participants were mothers or fathers, their primary language, race, parent description of their child's illness trajectory and prognosis, involvement of palliative care, and whether the child received life-sustaining therapies at EOL, were obtained from the survey. Parent surveys also included items on their perspectives about initiating/discontinuing technology use, goal concordant care, and their child's quality of life (QOL) at EOL.

Qualitative analysis

The interdisciplinary research team followed COREQ guidelines and conducted thematic analysis through an iterative multistage process.^19,20 Open-responses were uploaded verbatim into Dedoose©; a web-based software application for mixed methods data analysis.²¹ Comprehensive analysis focused on the identification of key contexts, conditions, and themes across all response sets pertaining to technology. After reading all responses, the research team (J.B., D.D., A.R.) developed a codebook using prefigured and emergent codes. All response items were independently coded by two experienced clinical researchers with expertise in palliative care (J.B.) and pediatric intensive care (D.D.) for children with CCCs. A qualitative research expert (A.R.) provided review and adjudication to ensure interpretive scope and consistency. Data were also analyzed according to whether or not the child used technology chronically or just at EOL. The full study team reviewed results and participated in data interpretation.

Results

Demographics

A total of 110 bereaved parents completed the survey and at least 1 open-response item (n = 110/211, 52%, Table 2). Parents were bereaved for a median of 3.9 years (interquartile range [IQR] 2.2–6.7). The majority of their children had congenital/chromosomal conditions or progressive conditions of the central nervous system. Seventy-five percent of the children in the cohort had chronic technology assistance.

Table 2.

Child and Parent Demographic Information (N = 110)

Variable	Result
Child
CCC diagnosis, n (%)
Congenital and chromosomal	43 (39)
CNS progressive	26 (24)
CNS static encephalopathy	17 (15)
Neuromuscular	13 (12)
Pulmonary	11 (10)
Any technology assistance, n (%)	82 (75)
Enteral feeding tube	75 (68)
Chronic respiratory technology	56 (51)
Ventriculoperitoneal shunt	11 (10)
Duration of primary CCC illness in years, median (IQR)	7.5 (0.8–18.1)
Palliative care involvement, n (%)	78 (71)
Any technology use in the last two days of life, n (%)	29/103 (28)
Age at time of death in years, median (IQR)	11.1 (1.9–20.3)
Location at time of death, n (%)
Hospital, ICU	57 (52)
Hospital, non-ICU	10 (9)
Home	31 (28)
Other	8 (7)
Unknown	4 (4)
Mode of death, n (%)
Died while receiving comfort care	40 (38)
Died receiving mechanical ventilation and/or CPR	19 (17)
Died after withdrawal or withholding of life-sustaining therapies	51 (46)
Parent
Median age in years, (IQR)	48 (40–57.3)
Mothers, n (%)	83/105 (79)
English as primary language, n (%)	100/106 (94)
Race, n (%)
White	94 (85)
Asian	4 (4)
Black or African American	3 (3)
American Indian/Alaskan Native	1 (1)
Other	2 (2)
No response	6 (5)
Time since child's death to study participation in year, median (IQR)	3.9 (2.2–6.7)

CCC, complex chronic condition; CNS, central nervous system; CPR, cardiopulmonary resuscitation; ICU, intensive care unit; IQR, interquartile range.

Findings

Based on survey items, the majority of parents described their child's underlying condition as life-limiting; with 27% (n = 32/110) of parents understanding that their child's condition would get worse over time and that therapies were aimed at comfort (Table 3). Only 6% of parents (n = 7/110) reported that their goals for their child's treatments were always focused on cure/life-prolongation. Instead, the majority of parents reported goals focused on QOL or a shift from life-prolongation to QOL as their child's condition progressed.

Table 3.

Parents' Perceptions of Their Child's Illness

Variable	Result (N = 110)
Understanding of child's illness at time of diagnosis, n (%)
Chance of being cured	7 (6)
Could get worse over time, but therapies could prolong life	27 (25)
Would get worse over time, and therapies were for comfort	32 (29)
Was not progressive, but made child vulnerable	13 (12)
Uncertain course	29 (26)
No response	2 (2)
Understanding of child's anticipated prognosis at time of diagnosis, n (%)
Days to weeks	11 (10)
Weeks to months	5 (5)
Months to a year	18 (16)
Years	49 (45)
Normal life expectancy	22 (20)
No response	5 (5)
Perception of relationship between treatments aimed at cure/life extension and maximizing QOL at EOL, n (%)
As illness progress, focus shifted gradually from cure/life extension to QOL/comfort	18 (16)
Care focused on cure/life extension occurred together with QOL/comfort	15 (14)
No cure/life extension was possible and focus was always on QOL/comfort	30 (27)
There was a sudden shift from cure/life extension to QOL/comfort when we realized child was at EOL	34 (31)
The focus was always cure/life extension and never QOL/comfort	7 (6)
No response	6 (5)
Discussed stopping technology/intervention despite the medical problem persisting for their child, n (%)	42/102 (41)
Decided to stop technology/intervention despite the medical problem persisting for their child, n (%)	46/104 (44)
Discussed not starting technology/intervention despite it being an option for their child's treatment at EOL, n (%)	42/105 (40)
Decided not to start starting technology/intervention despite it being an option for their child's treatment at EOL, n (%)	26/101 (26)
Felt child received intervention or treatment inconsistent with goals of care at EOL, n (%)	7/104 (7)
Felt child's life was prolonged longer by intervention/technology than parent would have wished, n (%)	3/103 (3)

QOL, quality of life.

On surveys, the majority of parents whose children used chronic technology found it beneficial for their child's QOL (Fig. 1). NIPPV and mechanical ventilation were seen as predominantly beneficial in the short-term, whereas tracheostomy and feeding tubes were seen as beneficial in the long-term. At EOL, ∼25% of parents decided not to initiate technological interventions for their child. Parent responses about specific technologies and whether they benefited their child or contributed to their child's suffering at EOL are shown in Figure 2. Few parents felt their child received interventions at EOL that were inconsistent with their goals (n = 7/104, 7%) or that technologies prolonged their child's life longer than they would have wanted (n = 3/103, 3%).

FIG. 1.

Percentage of parents who felt that their child's chronic technology assistance improved their quality of life in the short term, long term, or neither (%). NIPPV, noninvasive positive pressure ventilation.

FIG. 2.

Parent perception of whether their child benefited or suffered from technologies during end of life (%). ECMO, extracorporeal membrane oxygenation; PICC, peripherally inserted central catheter.

In contrast, open-response items revealed more nuanced parent perspectives on the benefits, burdens, and blended ways technology impacted their child (Fig. 3). The majority of parents described how technology sat at the intersection of survival, symptom burden, QOL, and goals of care. Many parents also described navigating the interplay of these priorities in making the best decision for their child (Table 4). When data were examined according to whether the child received chronic technology (+Chronic Tech) or did not (−Chronic Tech), there were no substantial differences between subgroups regarding themes. Rather, themes were more cross-cutting than distinct between the two groups. In addition, subanalysis of data according to parent reported understanding of prognosis did not reveal differences in decisions about the application of acute or chronic technology, although the number of parents who thought that their child's anticipated prognosis was days to weeks or weeks to months was small (n = 16/110, 14%).

FIG. 3.

The blended benefits and burdens of technology.

Table 4.

Themes, Subthemes, and Representative Quotes from Bereaved Parents on Technology Assistance for Their Child with Complex Chronic Conditions

Themes and subthemes	Representative excerpts
Intersection with goals of care
Technology was necessary to give time for life extension and/or to say goodbye	Although it might have prolonged her life, medical intervention would not have provided her comfort. In our case, her comfort was most important to us. We also felt it necessary to avoid ever having to decide whether to discontinue ventilation, so we chose to not start it. (Parent 327, −Chronic Tech) Benefits were clearly extension of life, necessary treatments in the process of attempting to cure. (Parent 15, −Chronic Tech) The BiPAP machine helped when her lungs first started failing, then came intubation, then came the trach. All necessary to extend her life while we waited for organs. But all came at an expense, pain, fear, and further complications. (Parent 190, +Chronic Tech) He suffered brain death. The intubation prolonged the inevitable, bought us some time for family to gather. (Parent 182, +Chronic Tech) Everything done helped keep her alive but also contributed to her death and the pain that she suffered in between. (Parent 190, +Chronic Tech) The benefits for everything that was done was to prolong her life and try to save her. She had dialysis to try and clear ammonia after her liver failed while waiting for lung and liver transplant. This extended her life for one week until organs became available. She received new lungs and liver which extended her life by three months. (Parent 190, +Chronic Tech) We debated initiating BiPAP but decided to during a hospital admission for collapsed lung when [our daughter] was six months old. BiPAP was then used/needed daily ∼15 hours per day until she died. We NEVER wanted trach/ventilator. (Parent 18, +Chronic Tech) [The technology] kept him alive for us to say goodbye. (Parent 74, +Chronic Tech) Having a dual diagnosis, [our son's development issues] prevented his understanding of therapies used and thus each therapy for him was a disruption and meant discomfort+apparent suffering—However, they kept him alive while in place. (Parent 135, −Chronic Tech) Emotional distress over trach. However, in the long run it helped prolong his life. Vent and BiPAP helped. (Parent 343, +Chronic Tech) Although the transplant surgery saved her life, she had a stroke during the procedure which then made recovery nearly impossible. Complications from the liver transplant caused fluid leaking into her abdomen which caused nausea, pain, and made movement difficult. Not being able to move from the stroke and fluid caused horrible bed sores and fluid build up in the lungs. I could go on and on. (Parent 190, +Chronic Tech)
Technology greatly impacted the child's QOL and symptoms	[The technology] help[ed] her get through the complication and let her body rest when needed. PICC/central line—was on TPN so keep her getting nutrition for over four years to keep her going. (Parent 253, +Chronic Tech) The treatments were causing unnecessary suffering for a fatal condition. We decided against continuing [them]. (Parent 135, −Chronic Tech) While on the BiPAP, [our daughter] was able to rest, sleep and be comfortable. (Parent 180, +Chronic Tech) She would not have been able to come home without the trach/home vent. (Parent 184, +Chronic Tech) At the end BiPAP was discontinued as it was no longer for comfort. (Parent 193, +Chronic Tech) We requested removal of ventilator and assisted breathing devices when we knew that improvement was unlikely and that our son's QOL was severely compromised and involved a high degree of suffering and multiple surgeries with no promise of longevity. (Parent 205, −Chronic Tech) I feel she suffered more than she should have. I would not have had so many medical interventions had I known she was going to die so quickly. (Parent 169, +Chronic Tech) [Our son] was visibly uncomfortable while receiving BIPAP and while being intubated. (Parent 88, +Chronic Tech) Discomfort with placement of mask. BiPAP extended her life—used ∼15 hours per day, used when sleeping, it was removed when awake so she could be moved around the house. (Parent 18, +Chronic Tech) The pain and discomfort of the PICC line itself and limitations with the line, but helped somewhat with the infections. (Parent 193, +Chronic Tech)
Complications and regret
	We regret making the decision to turn the ventilator down which ultimately caused her to die. We made the decision after she had a second major stroke and we were told there was nothing they could do and she would not survive the brain damage that had occurred. We feel like we rushed that decision and could have just waited for whatever would have happened to happen without intervention. But, we were afraid she was in pain and suffering. So, we made the decision. But we still regret it and it will haunt us forever. (Parent 190, +Chronic Tech)Part of me wishes I had known enough to ask for life support. .. Part of me wanted to keep feeding my son even though they turned off the feeding tube. (Parent 354, +Chronic Tech)The decision to have a trach was our decision and one we would not have made if we would have already known her diagnosis. I feel she suffered with the surgery, she struggled to heal and the whole process caused her more pain. (Parent 169, +Chronic Tech)The only one I was “forced” into was the baclofen pump. .. It didn't work and made her worse. (Parent 253, +Chronic Tech)1. DNR order rescinded by parents. 2. Clotted ECMO swapped out. 3. Cardiac arrest..4. Resuscitated,. Beaten and bleeding. Lungs eaten. 5. Advised and urged, parents requested to have ECMO line severed. 6. Line severed in parents' presence.7. Pulse not heard for may minutes. 8. A life ended. (Parent 248, −Chronic Tech)I wish we had had a more serious discussion about EOL wishes. Wish that a trach had been discussed. Wish the care had been better. Wish we had minimized some of the drugs - especially the one that paralyzes. (Parent 125, +Chronic Tech)

BiPAP, bilevel positive airway pressure; DNR, do not resuscitate; ECMO, extracorporeal membrane oxygenation; PICC, peripherally inserted central catheter; TPN, total parental nutrition.

Intersection with goals of care

Many parents described the ways in which technology was associated with their goals of care. Some parents felt it was necessary to use technology for their child's survival, whereas a few parents felt fundamentally against both acute and chronic technologies because of their child's life-limiting CCC.

The therapies that were given were needed—not optional. (Parent 125, +Chronic Tech)

More often, however, parents described how their goals for their child centered around a balance between life-prolongation and QOL. Specifically, at EOL, parents reported that technology enabled their child to survive so that they could accomplish goals such as seeing if therapies worked or if their child would return to their baseline health.

Dialysis was saving his life. Ventilation was helping him breathe. Central line was for hemodialysis… Everything had it pains and aches—all he could [do] was cry. But it was saving his [life]. (Parent 56, +Chronic Tech)

In contrast, a few parents did not want their child to be dependent upon technology either acutely or chronically for survival.

Our son[‘s]… brain stem was damaged and he could not breathe on his own. Technically & medically, ventilation was seen as a benefit, but we viewed this as an invasive measure once we accepted early on that his prognosis would likely be less than 1 year. (Parent 205, −Chronic Tech)

Parents also described using technology at EOL as a way to prolong their child's life so they could “wrap their heads” around their child's death or gather family to say goodbye.

The breathing tube kept him alive, and frankly gave us the opportunity to get our heads around the fact that he was going to die. (Parent 68, −Chronic Tech)

Similarly, parents expressed many different opinions about how technology impacted their child's QOL and symptom burden. Parents who decided against both acute and chronic technology often described how it contributed to their child's “unnecessary suffering,” or was no longer in service of their child's QOL.

The BiPAP wasn't that effective anymore, so because I was more interested in the quality of his life, it was decided not to use the BiPAP anymore. (Parent 211, +Chronic Tech)

At EOL, parents commonly described how technology contributed to their child's pain and suffering. Specifically, this related to placement of acute technology, such as intubation or peripherally inserted central catheter (PICC) attempts. This was not only about physical pain, but emotional discomfort as well.

Although my daughter was nonverbal, I know the intubation and frequent PICC placements were uncomfortable. (Parent 113, +Chronic Tech)

Failed extubation was horrifically traumatic to him physically. I believe emotionally as well. Despite being in a coma… [our son] had tears in his eyes. (Parent 15, −Chronic Tech)

In contrast, however, some parents felt acute technology at EOL helped in easing symptoms.

The trach and involvement of the use of a ventilator allowed my daughter to not have to work so hard to breathe. It was a huge benefit for her. (Parent 235, +Chronic Tech)

Chronic respiratory technology and artificial nutrition/fluids also enabled some children with CCCs to get home, which many parents saw as beneficial.

The Continuous Positive Airway Pressure (CPAP) allowed her to come home with an amazing QOL. (Parent 7, +Chronic Tech)

It helped to keep her comfortable, fed & alive so we can learn about her & love her & know her. (Parent 354, −Chronic Tech)

The majority of parents, however, described the ways technology was a blending of both benefits and burdens. This included the way both acute and chronic technology caused discomfort, but relieved symptoms and sustained life.

[Our daughter] did not like to have the CPAP on while she slept but it truly allowed her to breath more easily. (Parent 44, +Chronic Tech)

Complications and regret

Parents also expressed many regrets about both acute and chronic technology use in their child's care. A few parents recalled technology malfunctioning or leading to complications. Other parents felt decisions about initiating or discontinuing chronic technology were made too quickly, which did not give the child a chance to recover. Similarly, a few parents described a prolonged decision to stop technology at EOL, causing suffering. Some parents described how technology got in the way of them holding and spending time with their child.

I sincerely regret allowing [our daughter] to receive a tracheostomy because I believe it allowed for complacency… and the drive for her to improve on her own was negated. (Parent 69, +Chronic Tech)

Looking back, I wish I had hugged my daughter more. I was put off trying because of all the tubes & I didn't want to dislodge them. (Parent 116, +Chronic Tech)

Conversely, some parents also discussed their lack of regret and felt that they did all that they could for their child, which brought them a sense of peace.

We did everything we could until it became obvious that either she would die or her QOL would have been extremely low if she survive[d], meaning permanent attachment to medical equipment to keep her alive… so we are at peace with all of our choices. (Parent 147, −Chronic Tech)

Discussion

In this mixed methods study, quantitative data suggested that most parents found both acute and chronic technology assistance to be appropriate and beneficial, however, the qualitative data revealed more complicated contexts and nuanced parent experiences. The majority of bereaved parents recalled blended feelings about the benefits and burdens of technology for their child. Parents recalled acute and chronic technology being important for survival and giving time, but that it sometimes caused additional pain and suffering. Other parents felt that respiratory technology and nutritional support benefited their child, improved QOL, and diminished symptom burden. Sometimes individual parents reported a mix of feelings, where technology was seen as both a benefit and a burden to their child.

It is understandable that decisions about acute and chronic technology assistance are complex for parents of children with CCCs. Many children with CCCs use chronic technology supports throughout their lives, making it a normal part of their everyday care and family experience.⁴ Children with CCCs also often have refractory symptoms, including breathing difficulties and feeding intolerance that parents contend with regularly—often with the help of technology.^22,23 In addition, many parents of children with CCCs see supporting their child's chronic technology needs as part of being a good parent and doing what is possible for their child to thrive.^24–27

Based on these factors, parents of children with CCCs are well-positioned to understand how technology may be benefiting or burdening their child at EOL. On the contrary, parents of children with CCCs may be more apt to normalize their child's technology use and some of the associated complications. Regardless, many parents' priorities evolve with their child's changing health and parents' goals at the time of their child's EOL are often multifaceted—including hopes for life extension and comfort.^28,29 Parents in this study often described making a decision about technology at EOL that supported their child's QOL and that protected their child from unnecessary pain and suffering. Parents opted for technology when they felt it was providing comfort—especially for breathing, nutrition, and rest. Parents also opted for technology so that their child could receive curative therapy, return to baseline health, or so that families could say their goodbyes. Parents did not opt for acute technology when they felt that it would prolong their child's death, when they thought that it would cause suffering, or when it was against their underlying goals of care.

Layered on top of these blended goals and difficult decisions are the emotions that come with experiencing the death of a child. Feelings of regret and unease that may follow such a difficult time are natural and expected. In this study, parents proceeded with both acute and chronic technology so that they would feel they had done everything possible for their child and some regretted this because they felt that it led to their child's additional suffering. Other parents regretted not advocating to give technology more time to work. Parents also described regretting not initiating discussions about technology earlier in their child's illness. This is similar to other studies examining regret about technology decisions among parents of children with CCCs, as it may be that many parents live with questions and regrets about medical technology for their child not only at EOL, but throughout their chronic illness.³⁰ These feelings may be an important part of the way parents process the emotions that come with making life-changing decisions about technology assistance for their child.

This study has several important limitations. Our sample of parents predominantly consisted of white mothers of children who were all cared for at a single institution, limiting generalizability. Qualitative data were taken from open-response survey items rather than traditional interview and focus group formats, which limited our ability to clarify perspectives and capture additional ones. Data also were only collected from parents who returned surveys and whose decisions about technology occurred before 2015, limiting our ability to understand the perspectives of parents who did not respond and how more recent medical advances may alter parents' perspectives. In addition, participants were not provided with a definition of experimental therapies on surveys, but rather answered this item based on their own interpretation. Furthermore, at times during the analysis, it was difficult to determine whether parent participants were reflecting on acute, chronic, or both types of technology for their child, further limiting definitive results from this study. Although an accepted standard in the pediatric literature, some parents were bereaved for many years, likely resulting in recall bias.^31,32 Despite this, our data are rich and clearly demonstrate an array of parent perspectives.

Conclusion

Parents face many important decisions about technology assistance for children with CCCs throughout their lives and at EOL. Bereaved parents in this study described complex relationships between the benefits and burdens of both acute and chronic technology. While technology was perceived by some parents to result in complications or regret, many parents perceived technology as providing extended survival or improving their child's QOL. Similar to other important counseling conversations, decisions about technology assistance may differ for each parent—making assessing and reassessing goals of care critical. Ultimately, parents' decisions about technology likely center around their overall goals of care and how best to support their child throughout their illness and at EOL.

Footnotes

Authors' Contributions

J.F.B. conceptualized and designed the study, analyzed the data, drafted the original article and revised the article. A.R. and D.D. conceptualized and designed the study, analyzed the data, and edited and revised the article.

Acknowledgments

We thank the parents who generously shared their perspectives with us for this study.

Funding Information

This work was supported by the Agency for Healthcare Research and Quality (K12 HS022986): Mentored Career Development in Child and Family Centered Outcomes Research (PI: D.D.). Funding for J.B. was supported by the Clinical Research Scholars Program, Center for Clinical and Translational Research at Seattle Children's Research Institute.

Author Disclosure Statement

No competing financial interests exist.

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