Caregiver perspectives of dialysis initiation for children with kidney disease: a qualitative study

Abstract

Background

To better support family-centered care surrounding dialysis initiation, greater understanding of caregiver experience is necessary.

Methods

Using thematic analysis, we conducted a secondary analysis of semi-structured interview data from a qualitative study of caregivers of children receiving dialysis recruited from 3 pediatric centers. Prominent themes in caregiver experience of caring for a child initiating dialysis were identified.

Results

Thirty-five caregivers participated. Three major themes emerged from qualitative analysis: (1) parenting disrupted - caregivers experienced an acute disruption in their parenting role due to the unexpected, emergent circumstances and vast information accompanying their child’s diagnosis; (2) redefining parenting - caregivers sought to reestablish their innate parental role and foster their evolving medical provider role through reassurance that their child could survive, communication with the medical team, and engaging in care plan development; and (3) leveraging dual identities - to positively impact their child’s experience and enable flourishing, caregivers leveraged their established caregiver role and newly realized medical provider role through voicing their perspectives, watching over their child’s care, and preparing for future changes in their child’s health. If caregivers’ evolution was not nurtured and enabled, acute fluctuations in their child’s care could contribute to future disruption and need to restore their parental role. However, if caregiver development was fostered, caregivers acquired increased ability to prepare for vacillations in their child’s care.

Conclusions

Improving delivery of family-centered care and support of caregivers at dialysis initiation will require directed efforts by nephrology care teams to foster caregiver evolution and resilience and respond to the family’s changing experience of kidney disease.

Introduction

Childhood chronic kidney disease (CKD) impacts the whole family [1–8]. Prior research has shown that caregivers of children with CKD experience lower health-related quality of life, increased levels of anxiety and depression, and financial instability with the burden evolving rather than resolving following kidney transplant [9–13]. Though there is a generalized understanding of the sequelae of having a child with CKD experienced by caregivers, there is a lack of information about the parental experience at particular points of care resulting in the most intense demands [5, 14, 15]. Dialysis initiation is one such inflection point in care [16].

Patient- and family-centered care is recognized as the ideal standard in pediatrics to support families during their experience of illness of a child [17, 18]. This care approach relies on open information exchange with shared decision-making as able, respect for differences, collaboration and negotiation between medical teams and families, and consideration of the family context [17, 18]. Despite the impact that dialysis initiation has on caregivers and the substantial responsibility that they assume [19–21], research suggests that patient- and family-centered care is infrequently achieved. Many dialysis decisions are initiated and perpetuated by medical teams, and caregivers tend to be peripherally involved in care plan development [15, 20, 22, 23]. Caregivers report desiring to be more actively involved but instead may feel that they “surrender parenting” [20, 22, 23].

In response, some have called for a renewed focus on patient- and family-centered care delivery to balance the multidimensional considerations within the complex decision to initiate or forgo dialysis and center the perspectives of patients and their families [14, 24]. However, there is a lack of prior qualitative research surrounding dialysis initiation [24], and thus, the experience of caregivers at the time of dialysis initiation remains poorly understood.

Thus, the overall objective of this qualitative study of caregivers of children requiring dialysis was to better understand caregiver experience. In the present secondary analysis, our aims were to investigate caregiver experience at the crucial time of dialysis initiation and to explore opportunities to better support patient and family-centered care delivery.

Methods

Study population

The initial study population consisted of a purposive sample of English- or Spanish-speaking primary caregivers of pediatric patients (age 0–18 years) with kidney failure receiving chronic peritoneal dialysis or hemodialysis from regional dialysis programs at Seattle Children’s Hospital (SCH), Texas Children’s Hospital (TCH), and the Children’s Hospital of Wisconsin (CHW) between March 2016 and April 2017 [12]. Study flyers were placed in dialysis units, and in-person recruitment was performed by dialysis social workers. Purposive recruitment was performed to garner a variety of experiences across languages, ethnicities, and dialysis modalities. Of the caregivers approached, all consented to participate. Caregivers were offered $25 Amazon gift cards as compensation for time and effort in participating in the study. This study was approved by the institutional review boards at SCH, TCH, and CHW; secondary analysis was exempted by the SCH institutional review board.

Qualitative interviews

Caregivers completed interviews lasting, on average, 70 min by phone (14%) or in-person (86%) in the hemodialysis unit or peritoneal dialysis clinic. Caregiver interviews were conducted using a semi-structured interview guide designed to elicit participants’ experiences and perspectives of parenting a child on dialysis. The interview guide was informed by extensive literature review and expert opinion including input from three national experts in pediatric dialysis and two national experts in qualitative research methods and consisted of domains related to caregiver experience of chronic dialysis. Interview questions and probes were iteratively refined by the research team after review of the first four interviews performed. Interviews were conducted by a pediatric nephrologist (A. W.) not directly involved in care of the participant’s child, a psychologist affiliated with the dialysis unit (C. T. Z.), or a research assistant with no previous contact with the caregivers; all had experience with qualitative interviewing. Interviews of Spanish-speaking caregivers additionally utilized a certified medical interpreter. All interviews were audio-recorded, transcribed verbatim, deidentified, and entered into Dedoose software [25] for analysis.

Analytical approach

Utilizing inductive thematic analysis [26], we performed a secondary analysis of the previously collected interview data. First, pursuant to data immersion [27], the primary author (T. R. H.) read all deidentified caregiver interviews. Transcripts were then edited to include only comments related to dialysis initiation. Second, T. R. H. read all edited transcripts, creating memos concurrently. Third, T. R. H. independently reviewed 3 transcripts and utilized line-by-line, inductive coding to create a preliminary codebook to capture caregivers’ experiences with dialysis initiation for their child. Fourth, T. R. H. and a research assistant (R. R.) trained in qualitative methods each independently coded a single transcript and met to discuss discrepancies. When new codes emerged with subsequent transcripts, the coders reviewed the earlier transcripts to ensure that all new codes were also captured from prior iterations (constant comparative approach) [28]. Through regular consensus meetings, a third coder (A. W.) served as a tie breaker to assist with any disagreements in coding between the first two coders. Consensus was reached on code definition refinement after repeating this process for 2 transcripts. Fifth, to ensure completeness of the codes, the preliminary codebook from the current study was compared against the finalized codebook of the original (primary analysis) study. However, there were no codes represented in the original codebook that were not present in the codebook for the current secondary analysis study, so no additional codes were added following this deductive comparison. The finalized codebook was independently applied to all interviews by T. R. H. and R. R.

Lastly, pattern coding was performed to group summaries into themes [26]. Themes were compared across participants, and a final thematic schema of processes defining the caregiver’s experience of their child initiating dialysis was developed, refined, and agreed upon by all authors. All interviews were reviewed to avoid premature declaration of saturation, since this is a secondary analysis that was not specifically designed to answer the research question of interest; however, saturation was achieved [28].

Results

Thirty-five caregivers of children on dialysis were enrolled (Table 1). Three major themes emerged from interview transcripts reflecting the caregiver experience of dialysis initiation: (1) parenting disrupted; (2) redefining parenting; and (3) leveraging dual identities. A thematic schema demonstrating key relationships between themes and subthemes was developed (Fig. 1).

Table 1.

Participant characteristics

	SCH (n = 17)	TCH (n = 14)	CHW (n = 4)	Total (N = 35)
Caregiver sex, n (%)
Female	16 (94)	12 (79)	4 (100)	32 (89)
Male	1 (6)	3 (21)	0	4 (11)
Caregiver interview language, n (%)
English	14 (82)	14 (100)	4 (100)	32 (92)
Spanish	3 (18)	0	0	3 (8)
Race, n (%)
White	13 (76)	7 (50)	1 (25)	21 (60)
Black	0	4 (29)	3 (75)	7 (20)
Hispanic	3 (18)	3 (21)	0	6 (17)
American Indian	1 (6)	0	0	1 (3)
Interview participant, n (%)
Father only	1 (6)	2 (14)	0	3 (8)
Mother only	15 (88)	11 (81)	3 (75)	29 (83)
Both parents	0	1 (7)	0	1 (3)
Grandparent	1 (6)	0	1 (25)	2 (6)
Current dialysis modality of child, n (%)
PD	9 (53)	1 (7)	1 (25)	11 (31)
HD	8 (47)	13 (93)	3 (75)	24 (69)
Underlying disease, n (%)
CAKUT	9 (53)	5 (36)	3 (75)	17 (48)
Polycystic kidney disease	1 (6)	0	0	1 (3)
Nephrotic syndrome	0	7 (50)	0	7 (20)
Reflux nephropathy	3 (18)	0	0	3 (9)
Acute glomerulonephritis	2 (12)	1 (7)	1 (25)	4 (11)
Other	2 (12)	1 (7)	0	3 (9)

SCH Seattle Children’s Hospital, TCH Texas Children’s Hospital, CHW Children’s Hospital of Wisconsin

Fig. 1.

Caregiver experience of dialysis initiation for children with kidney disease. Caregivers underwent interconnected processes of parenting disrupted, redefining their parental role to include a new identity of medical provider, and then leveraging their dual identities of parent caregiver and medical provider. Initially, caregivers endured an acute disruption in their ability to fulfill their parenting role because of the abrupt, emergent circumstances and their lack of medical knowledge and need to rapidly acquire more. They underwent redefining of their parental role including fostering of their developing identity of medical provider through the understanding that their child was likely to survive dialysis initiation granting them permission to hope, communicating with the medical team, and engaging in care plan development, even when choices were limited. Finally, caregivers worked to leverage their established role of caregiver and newly realized role of medical provider to positively impact their child’s experience through empowerment, being vigilant in their child’s care, and developing an ability to adapt to abrupt and unexpected changes in their child’s care. If the evolution of caregivers’ identities was not nurtured and enabled, acute fluctuations in their child’s care could contribute to future disruption of their parental role or the need to redefine their roles. However, if this identity development was fostered, caregivers acquired increased ability to prepare for vacillations in their child’s care

Parenting disrupted

The circumstances surrounding their child initiating dialysis led to an acute disruption in caregivers’ power to fulfill their parental role, commonly resulting in feelings of paralysis (Table 2). Pragmatically, parental power was disrupted in relation to the typical day-to-day responsibilities associated with meeting their child’s basic needs and providing structure. Yet beyond that, the power to satisfy the nurturing aspects of parenting that support their child’s development and personal growth was also stunted. While caregivers had previously understood themselves to be the expert on their child, this expertise was acutely hindered. Disruption in power to fulfill the parental role was influenced by the sudden shock of dialysis initiation, the emergent nature of dialysis initiation leaving only options of death or dialysis for their child, and the information deficit and overload which parents acutely faced.

Table 2.

Theme 1: Parenting disrupted

Quote*	Quotation	Participant
	Subtheme: Sudden shock
1a	I think our biggest [surprise] was when he went in for the surgery for this catheter. We didn’t realize how fast he would have to go onto dialysis. We thought it was just kind of a precaution, ‘Be ready,’ so that was a surprise that he had to start right away…	4
1b	And it was just hard on us, because…there’s nothing wrong with her when she was born. Then all of a sudden, she’s sick	6
1c	It was, really, in the beginning, a big blur of finding out like, “Okay. Your child’s going to have extra medical needs, and this is a serious issue.” That was very stressful in the beginning	14
1d	You’ve got to go through the bad part first, into the tunnel	30
1e	I think I was just trying to do exactly what I needed to do at that minute, and not think too far beyond that…they had to get him in and get a line in him so that he could start dialysis the next day. And so I was just sort of focusing on each little, tiny step	7
1f	I don’t even know what to ask at the moment, because I was just shocked. It’s like I feel I’m going to throw up, or faint, or something. Pass out	23
1g	They explained the process, brought us to the unit, walked us through, and that was difficult. You know, cause when you first walk in that door, and you see children on dialysis, it just kind of blows your mind	19
1h	So the first, beginning, it was a challenge because I didn’t know kids were on dialysis. All I ever knew was adults, so that was a big change overnight in my life. Because I didn’t know anything about kids on dialysis, until [child] was on dialysis	21
	Subtheme: Death versus dialysis
1i	And at that time, they tried to do the increase in medications and stuff – and that’s when we pretty much said, you know, he has to go on dialysis. That was the only way. And of course, when you get that “they have to go on dialysis”, it’s kind of overwhelming; it’s kind of shocking, especially when we have a child…So you’re faced with those challenges, and then the fact that your child’s having his childhood taken away	19
1j	At that moment, it was not an option to choose. It had to be hemodialysis because she no longer had her kidneys, and they couldn’t get to her stomach because of the surgeries she had had	12
1k	We had to make a decision on a Sunday to have his kidneys removed like within the next two days. So it was short notice…	33
1l	It’s a decision we have to make because they tell us we don’t have a choice either. So we have to do it…We don’t want to waste the time because his phosphorous is really high …but we’re just doing whatever they tell us and we don’t have a choice, nothing. So we had to do it. We just started dialysis	26
	Subtheme: Information deficit and overload
1m	When we started talking about peritoneal dialysis and everything it involved, you had the machines, and the bags of fluid, and making sure there’s no dust on the ceiling fan, and the infection risk, and that was just really over the top. It spins, you know, and kind of gets your head in a space where it’s like ‘Oh my God, I don’t know if I can do this’	19
1n	He ended up getting sick. And that’s what ended us in [city] again, with having to realize that his function was going down. He got a virus, and so then it was, let’s get the surgeries done. Let’s do whatever it takes to get him on home dialysis. So he has the G-tube, as well as the PD cath. And then with the training through [hospital] and their peritoneal dialysis training, it was quite intense. I didn’t know if I was going to be able to do it…	16
1o	Everything was pretty blurry in the beginning because so much was going on, but I guess explain it more in depth, so I wasn’t getting bits and pieces from everyone	14
1p	I stopped going on Google now…Because I’ve made the mistake of going back like a month ago and trying to see if there were any reasonings. And there’s a bunch of things about life expectancy for a child on dialysis. It’s not good. So I just try to refrain from going to look at it anymore	31
1q	From all this information they gave, I didn’t know what was going on…because I don’t understand English very well	17

^*The number indicates the theme to which the quotation pertains; the letter indicates the order in which the quotation is referenced in the manuscript text

Sudden shock

Even in clinical situations in which it was expected that dialysis would be needed at some point, when this point was reached, most caregivers described it as “sudden” and “shocking” (quote 1a). Parents struggled to comprehend the acute nature of their child’s illness, at times quickly escalating without warning from seemingly well to sick (quote 1b). Many caregivers reported difficulty with recalling the details of early conversations because of the “whirlwind” nature of realizing that their child would need dialysis (quote 1c). Caregivers analogized this realization to entering a tunnel (quote 1d) or operating “in a shadow” and found it difficult to consider anything beyond immediate, minute-to-minute circumstances (quote 1e). Physical reactions were often associated with the shocking nature of information delivered by the medical team (quote 1f). Seeing dialysis performed, particularly on children, compounded the intensity of the situation (quote 1g). Many caregivers were familiar with dialysis for adults, but observing this procedure performed for children was unsettling (quote 1h).

Death versus dialysis

The acuity of their child’s medical condition and understanding of dialysis as “the only way” to survive was an additional contributor to disruption of parental power to fulfill the parental role (quote 1i). Technical challenges or comorbid conditions could play a role in acuity and limit the dialysis modalities available to many families (quote 1j). While caregivers attempted to gain information to engage in the decision-making process, the rapidity with which decisions had to be made was a challenge, generally leaving them little time for consideration (quote 1k). Often, they were subsequently resigned to the decisions made by the medical team (quote 1l).

Information deficit and overload

While parents had inherent knowledge and expertise in their child, the lack of baseline technical medical knowledge and need to quickly learn, apply, and master a vast amount of information about their child’s newly realized medical needs further challenged parents’ power to fulfill their parental roles and contributed to the sense of overwhelm (quote 1m). Caregivers were faced with acutely grasping their child’s circumstances, as well as the demands that they would face with dialysis initiation (quote 1n). The increasing numbers of people sharing information compounded the difficulty in “soaking up” the volume of information “thrown” at caregivers (quote 1o). To attain knowledge, many caregivers sought out information sources external to their medical team, which could make things more stressful (quote 1p). For one caregiver, the language difference with medical team members intensified the challenges in gaining knowledge to restore parental power (quote 1q).

Redefining parenting

Caregivers sought to redefine their role as a parent, reestablishing their ability to fulfill their parental role and fostering their emerging role as medical provider. This process could be undermined or facilitated by actions of members of the medical team, leading parents to persistently experience a disruption of their role or enabling them to move toward an empowered state (Table 3). The redefining of parenting wincluding development of their new identity of medical provider was initiated through realizing first that their child could survive and then that they likely would survive and enabled by valuable communication with the medical team, including their inclusion in care plan development even when options were effectively limited. Navigating redefinition of their parental role enabled caregivers to begin to harness their inherent traits and resources along with newly developing and evolving skills and characteristics.

Table 3.

Theme 2: Redefining parenting

Quote	Quotation	Participant
	Subtheme: Permission to hope
2a	The most helpful thing [I was told] is that there was a way, that it wasn’t the end, because they did tell me they didn’t know she would make it through the night, when she first got sick, and that was the way to make it, that ‘It’s not as horrible as it’s sounding’	2
2b	It was a positive step, without having a transplant. You know, she needed to not remain… Without dialysis, she would continue to get ill. With dialysis, it would be a positive turn for her, she’d feel better	8
2c	I could have been masking what my real questions were, because I needed to know that he was going to be okay	19
2d	At the beginning, I was really low often and I cried a lot. I have family but it’s as if when you have a child that’s ill, you need to feel that you’re being held, that you’re being supported also…I had a lot of things coming into my head. And I would think that my daughter was going to die… And she would ask me why I would cry, and I would tell her I’m crying with happiness so that she wouldn’t feel that it was because of her. Because I had this feeling or this fear that she was going to die	17
2e	One of the things that was helpful for me is looking forward, there was still a really good best-case scenario, which is helpful, just for my own outlook, and so being able to focus on that…having that to kind of focus on, that you know ‘This is what it could be like,’ and thinking about, if everything goes like we want it to, you know, what this would look like in a year or more	32
	Subtheme: Quality of communication
2f	I think just everything that they explained to us and took more time to tell us what it meant helped, because it was just super scary dealing with everything	1
2g	We didn’t ask them to hold punches. So we pretty much got straight answers from every doctor we worked with. [Physician’s] team has been really great over here. There are no false hopes going on	22
2h	And he was very clear. I remember that day. He was very much like, “She will need a transplant.” It wasn’t like, “Well, we think so.” Because I think parents cling to those words like think or maybe. Those qualifying words. I like the very concrete like if you know it. And that’s what he said. He goes, “We have no idea when. We can’t know that right now.” And she was only five months old and she was super sick. But he said, “But she will”	35
2i	The main thing with [child] is knowing what’s going to happen. Having no surprises, having a description of what’s going to happen to him ahead of time, so that we can talk about it enough, so he knows what to expect and then I can be there to talk him through it	34
2j	So the way it was explained to me was in a sense that this was the next phase of what he had to go through…we have just kind of gone along with what the nephrologists you know have suggested and they’ve kind of guided us as far as, ‘Okay, now this is the time we have to do this or that’…I think just the comfort of knowing the care that he was getting and I knew that he was in the best hands and doctors and nurses…and everybody kind of just came together you know when we were there and just kind of guided us through it	33
2 k	Just the whole process of dialysis, I think there’s a lot that we weren’t told, because we were pushed towards the other type of dialysis so much	4
2l	Just the fact that they never told me that I would have liked to know that the PD catheter was actually something that could stop working at some point, and it could be blocked and have to be replaced. That I would have liked to have known. So it wouldn’t have been a surprise	12
	Subtheme: Illusion of choice
2m	[Nephrologist] was very good about it because it was kind of, not like it was our choice, but it was kind of… It was getting frustrating giving [child] 60 ml of fluid every 20 min and so many medications and so many labs and so many things. And it was just getting to be a lot to handle. Setting your phone timer every 15 min all day long was a little exhausting. So it was really nice that [nephrologist] was aware of that…so you felt like you had some choice in the matter. A little bit. Even if it’s like an illusion	35
2n	When we got here in this hospital, I hung on every word that they said, because they weren’t just passing it off. They took control and I just let them because it felt a little bit better that someone was taking control	18
2o	They gave us the option of doing hemodialysis, but they really recommended the peritoneal dialysis, just because one, it’s less invasive…And also it was a deciding factor was that we could do it at home, where with the hemodialysis we’d have to go into the clinic, and that was just-there would have been even more strain than doing her peritoneal dialysis at home	33
2p	I was asking a lot of questions, and at one point, when he was on the floor, they took him down for the catheter. And they had switched it. First, there was a temporary one, but they switched it to a permanent one. And they had put one of those PICC lines in and all this stuff. And I don’t know if they were just in the motion of getting it done, but they didn’t tell me. And so when they came up and they were like, “Well, we did this, and we did this.” And I was like, “Hold up. I would just like to be told before you all do anything with him”	30

Permission to hope

The critical and sudden nature of dialysis initiation led to many caregivers seeking reassurance from medical team members that their child could survive the immediate period and that there was a hopeful path forward (quote 2a). Hearing that there was a way to live and even flourish with kidney disease allowed dialysis to be viewed as a positive step rather than the life-threatening position they initially faced (quote 2b). One caregiver even described concealing his “real” questions because the need for reassurance that his child would live had not yet been met (quote 2c). If caregivers did not receive this “support,” they found themselves persistently confronted with thoughts of their child’s demise (quote 2d). The realization that their child not only could but would survive following dialysis initiation and there could be a “best-case scenario” was the turning point for many caregivers to begin to shift from the paralyzing position of dialysis initiation to feel hopeful and look toward the future (quote 2e).

Quality of communication

Caregivers described common characteristics of the communication with medical team members that enabled them to negotiate their parent role, moving beyond feelings of powerlessness. Patience and the willingness to explain concepts as many times as needed were highly valued by almost all caregivers (quote 2f). It was vital that clinicians speak candidly, without giving “false hopes,” allowing caregivers to “know all the issues at hand” (quote 2g). Even if honesty required disclosure of some uncertainty, most caregivers appreciated a forthright approach (quote 2h). Candid communication allowed for avoidance of surprises, which empowered parents in their relationships with their children (quote 2i). Parents expressed a sense of relief when they trusted the medical team to “guide” each decision (quote 2j), and information was shared in a way that valued parental input.

In contrast, caregivers were unsatisfied with input from medical team members that they felt was censored. If clinicians were perceived to be “beating around the bush” or not sharing information, particularly in an attempt to “push” caregivers toward a specific choice (quote 2k), this frustrated parents and limited their ability to prepare for future “surprises” (quote 21).

Illusion of choice

While many caregivers realized that the decisions available to them were limited due to circumstances, when medical team members engaged caregivers through the care plan development process, even if it was an “illusion,” their sense of parental power and medical expertise was bolstered (quote 2m). One caregiver specifically spoke of feeling validated and supported when her nephrologist realized that the demands being placed on the caregiver were untenable, leading to the recommendation to start dialysis. Some caregivers discussed a process of purposefully shifting decision-making and care plan development to the medical team, allowing them to “take control” (quote 2n). Even if a specific course of action was clearly recommended, caregivers valued being presented with the options and being engaged in care plan development (quote 2o). In contrast, one caregiver described her frustration when a procedure was performed without her knowledge, eliminating her involvement in the decision-making process (quote 2p).

Leveraging dual identities

Once caregivers traversed the acute disruption of their ability to fulfill their parental role and began to redefine parenting, now also operating as a medical provider, they drew upon their pre-existing qualities and resources and cultivated adaptive mechanisms to manage their child’s kidney disease and promote well-being. This ability to leverage dual identities of parental caregiver and medical provider — now increasingly flexible to changes and buoyed against deviations from expectations — allowed them to navigate their child’s future needs (Table 4). This evolution of identities was facilitated through their sense of empowerment, close oversight of their child’s care, and then utilization of these skills to adapt to future changes in their child’s medical needs.

Table 4.

Theme 3: Leveraging dual identities

Quote	Quotation	Participant
	Subtheme: Empowerment
3a	My input mattered, it counted	19
3b	The doctor that we had…he was very open to any input, or suggestions, or questions that we had	22
3c	I’m his 24/7 caregiver. And if something’s working then we need to stay with it. So that’s where they’ll tell me, “Well, yeah. Okay, you know best, Grandma, so we’re going to go with your treatment plan.” They wanted to stop his heparin at one point. And I said, “No.” I said, “He always has fibrin in his bag and there’s always that little, tiny trace amount.” I said, “But if he’s got fibrin in there don’t you feel that it would be best to keep him on it?” And they said, “Well, he’s not having any problems with it, yes we’ll go with that recommendation…”	16
3d	[Doctor] came out of the operating room. He shook my hand. He was like, “Always follow your heart because by you taking that decision, you just saved your son’s life”	20
	Subtheme: Vigilance
3e	Watch your child and see what works, because sometimes somethings might not work with his system. But just tell the doctor because the doctor can change things	18
3f	I want to know everything about my kid, because it’s– every minute, every hour, every second is a life for my kid	25
3g	What do I do best? I try to give him the best care that I can. I’ve learned not to take no for an answer in some areas and sometimes I have to take no for an answer. But if taking no for an answer is going to hurt him, in the long run, I don’t accept it	10
3h	I’m always watching the machine. I spoke with the nurse one day…because I wanted the treatment to be slower for my daughter because when that convulsion thing happened the next day, they wanted to do the full four hours, and I said, “No”…I said, “Only two, maybe three. And slow down, I don’t want it fast.” The doctor didn’t seem to want to and I said, “Well, either you do it slowly or I’m taking her home.” So they said that they would do three hours. So it was three hours and slowly. It’s difficult	17
3i	We like to know every little procedure there is…we pretty much want to know exactly what’s going on. And that’s from day one. He was sick at two. He couldn’t advocate for himself, so we are always advocating from a very early age. And we’re teaching [our children] to ask as many questions	22
	Subtheme: Managing the unexpected
3j	Just being aware, being on guard, there’s a curveball now and then, but I think the more vigilant you are about staying up on how it goes… participating and staying up on things, gives you the leeway to take on a curveball	5
3k	I think the most helpful thing was to realize that your life does not form around dialysis. Dialysis forms on your life	15

Empowerment

Through the process of empowerment, caregivers came to realize that their input was a vital component of their child’s care and well-being that “counted” (quote 3a). Many caregivers expressed a newfound ability to “push the envelope” on their child’s behalf. Often, this arose through medical team members’ willingness to be “open” to parental input (quote 3b). Caregivers were subsequently empowered to begin to employ their knowledge of their child to positively influence medical care (quote 3c). One caregiver described advocating for her child to undergo a procedure at a very precarious point. Following the successful operation, the physician praised her involvement, reinforcing the positive impact of her empowerment and ultimately attributing the decision to saving her child’s life (quote 3d).

Vigilance

In addition to providing their input, many caregivers also described their “mission” to watch over their child’s care, becoming increasingly involved in medical management and decisions (quote 3e) and striving to understand “everything” about their child (quote 3f). Vigilance was perceived by parents as an indicator of mastery in leveraging the roles of parent and provider (quote 3g), but if this was not recognized by medical team members, interactions could become adversarial (quote 3h). Caregivers also noted the importance of teaching children to be active in their care and begin to advocate on their own behalf, a skill which caregivers were prepared to impart (quote 3i).

Managing the unexpected

Ultimately, most caregivers were able to transition to a stance of adaptability serving as both caregiver and medical provider. When future care complications arose, caregivers were positioned to minimize disruption to roles of parent and medical provider and more quickly respond in a sure manner (quote 3j). With this flexibility also came an awareness and acceptance of dialysis as a part of their lives (quote 3k).

Discussion

In this secondary analysis focused on the experience of caregivers of children with advanced kidney disease at the time of dialysis initiation, we found that caregivers undergo an evolution in their established parental role and develop a new medical provider role that can enable their ability to adapt to and manage their child’s needs (Fig. 1). Our findings suggest that caregivers undergo interconnected processes of parenting disruption, redefining their parental role to include a new identity of medical provider and then leveraging of their dual identity of parent and provider to prepare for and adapt to acute fluctuations that may threaten their child’s flourishing. If the evolution of caregivers’ identities is not nurtured and enabled by medical team members, such fluctuations may contribute to future disruption of their parental role or the need to reaffirm their roles. However, if this identity development is fostered, caregivers acquire increased ability to prepare for vacillations in their child’s care.

Despite the significant advances that have been realized in the scientific understanding of kidney failure in the past 50 years, dialysis initiation remains a traumatic point in care for children with CKD and their caregivers [16], with limited improvement over time in the way in which families are supported [29]. Similar to prior work, parents in our study felt removed from the decision-making process and limited by circumstances of kidney failure, as well as by actions of medical team members [15, 20, 22]. Yet, our study identifies several areas in which caregivers could be supported through their experience of dialysis initiation.

A vital component of caregiver coping and evolution is patient- and family-centered care and communication [30], and the communication around dialysis initiation poses numerous chances for breakdowns. Many of the caregivers in this study expected that their child would require dialysis at some point in their life, yet the time at which dialysis was required was often unexpected, suggesting an impediment to communication or understanding between caregivers and clinicians. Consistent with prior findings, caregivers viewed censored information to be unhelpful and ultimately disempowering in their experience [31]. Further, as caregivers transitioned to medical providers, it was imperative that nephrologists recognized and respected this evolution to support communication and collaboration. Taken together, our findings suggest that support by nephrologists will require deliberate and ongoing individualized, family-centered care efforts with a recognition and appreciation of parents as partners in care. This evolution in caregiver communication needs, compounded by the evolving needs of the child as they traverse developmental stages, places significant demands on nephrologists [31]. To meet this need, expansion of nephrologists’ communication skills, particularly when it comes to difficult conversations, is imperative [32, 33]. The expertise of interdisciplinary team members should be leveraged in communication efforts [34]. Additionally, though subspecialty palliative care consultation remains underutilized in pediatric kidney failure [32, 35, 36], it provides an additional means to support challenging communication and resilience [30]. Importantly, early subspecialty palliative care consultation has been demonstrated to improve communication in analogous pediatric chronic disease states and could be of benefit to caregivers in their experience of dialysis initiation [37].

While the parent study of this analysis was not framed to specifically investigate the construct of resilience in the caregiver experience of dialysis initiation for their child, resilience nevertheless served a prominent role in the perspectives described. Resilience can be defined as a multidimensional process of adaptation to adversity [38, 39]. Interestingly, our developed conceptual model shares considerable overlap with prior frameworks of resilience, particularly those describing the experience of caregivers of children with cancer [30, 40–43]. Resilience among caregivers of children with serious illness includes baseline characteristics that may be non-modifiable, evolving skills and qualities with the potential to modify disease experiences including interactions with the medical team, and medical and psychosocial outcomes which impact overall patient and family well-being [30]. Our findings demonstrate commonality with this framework, particularly in relation to the evolution of caregiver identity during times of medical stress and transition. Here, parents identified ways that their own perspectives, skills, and interactions with medical team members enabled or impeded their abilities to redefine their parental role, develop as a medical provider, and ultimately support their child. In other words, they identified multiple factors impacting their ability to maintain their own and their child’s well-being during the stressor of dialysis initiation. This suggests that the evolution of caregiver resilience can be bolstered through targeted efforts led by nephrologists and advanced through interdisciplinary engagement including social work, psychology, psychiatry, child life, and spiritual care team members. While the construct of resilience and its impact on medical and psychosocial outcomes have garnered increasing interest in the pediatric dialysis population in the past years, [1–4, 8, 10, 12, 44, 45], the process of harnessing resilience is a potential object of focus for targeted intervention development deserving of future study [46–48].

This project has several limitations. First, although we attempted to garner a variety of experiences among many caregivers, most participants were White, English-speaking mothers, thus limiting generalizability. While the relative proportion of White and African American race and Hispanic ethnicity among caregivers is similar to the proportion among pediatric dialysis recipients in national data [49], future studies must focus on recruiting diverse populations. Along these lines, a diversity of experiences with dialysis initiation is encountered by caregivers that may be influenced by a variety of medical, demographic, and psychosocial factors. Future work with attention to these potentially impactful factors is warranted. Second, although nephrologists and children with kidney failure are primary stakeholders in the process of dialysis initiation, these perspectives were not included. As a novel investigation into caregiver experiences of dialysis initiation, however, this study provides a greater understanding of caregiver needs, enabling hypothesis generation for future work. Future efforts should highlight the interaction of caregivers, nephrologists, and especially patients, as only a portion of the narrative is revealed without the inclusion of each group. Third, our study included both caregivers of patients who had an established diagnosis of CKD and were expected to need dialysis in their lifetime as well as those who were acutely found to have kidney failure and needed emergent initiation of kidney replacement therapy. The nuance of these varying trajectories and how that may impact caregiver experience of dialysis initiation were not investigated; yet our achievement of saturation supports the considerable overlap in the experience of caregivers with children presenting with each of these disease courses. Fourth, our study included only caregivers of patients who chose to initiate dialysis. For a more complete assessment of caregiver experience surrounding dialysis decision-making, future investigation should seek to include caregivers of children who chose to forgo dialysis, as their perspectives are not represented here. Finally, this was a secondary analysis of previously collected qualitative data. The original study was not designed to specifically investigate the area of interest of this study. However, dialysis initiation was a dedicated domain of the original interview guide.

This qualitative study provides novel insight into the parental experience of caring for a child requiring dialysis initiation, highlighting key processes caregivers undergo as they transition from disruption of their role as parent, to redefining their parental role to include a new identity as medical provider, and ultimately leveraging their dual identities to positively impact their child’s care and prepare for future fluctuations in their health. Our findings suggest that alleviating the burden associated with dialysis initiation will require targeted efforts to enrich patient- and family-centered care and communication and attendance to the process of resilience navigated by caregivers, bolstered through dedicated efforts at each stage that evolve with the transformation of caregivers.

Data availability

The datasets generated during and/or analyzed during the current study are available from the corresponding author on reasonable request.