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Parental Perspectives on the Financial Impact of Caring for a Child With CKD
Original Investigation Parental Perspectives on the Financial Impact of Caring for a Child With CKD Meredith Medway, BLibStud (Psych Hons),1,2 Allison Tong, PhD,1,2 Jonathan C. Craig, PhD,1,2 Siah Kim, FRACP,2 Fiona Mackie, PhD,3 Steven McTaggart, PhD,4 Amanda Walker, MD,5 and Germaine Wong, PhD1,2 Background: The economic consequences of chronic kidney disease (CKD) are severe for adult patients and their households, but the out-of-pocket expenses and economic burden of CKD and how this affects the caregivers of children with kidney disease are unclear. This study aims to describe parental perspectives on the financial impact of caring for a child with CKD. Study Design: Face-to-face semistructured interviews. Setting & Participants: Parents of children with CKD from 3 pediatric nephrology centers in Australia. Analytical Approach: Transcripts were analyzed thematically. Results: 27 parents of 26 children participated. We identified 5 themes: loss of freedom and control (prioritizing care, limiting occupational opportunities, and appreciating socioeconomic advantage), burden of sole responsibility (inability to rely on others, lack of respite, increased separation of family roles, and selfreliance), adapting for survival (vigilant budgeting, redefining normality and expectations, rechanneling resources to basic needs, and negotiating work flexibility), instability of circumstances (depleted capacity to work, unpredictability of child’s health, burden of travel-related costs, imposition of debt, and domestic upheaval), and struggle in seeking support (“falling through the cracks” and unmet information needs). Limitations: Few participants were fathers (n 5 5), and results may not be transferable to non–Englishspeaking caregivers because these participants were excluded. Conclusions: Parents focused their resources and attention on meeting the complex needs of their child. Inability to sustain employment due to focus on their child’s care and both medical and nonmedical expenses were major contributors to the financial impact, with financial stress compounded by difficulties accessing government support. As a result, parents experienced profound financial and social instability and physical and psychological fatigue and exercised extreme financial vigilance. Increased access to respite and domestic support and financial and psychosocial interventions are suggested to minimize the financial impact of caring for a child with CKD, which in turn may lead to better care, quality of life, and health outcomes for children with CKD and their families. Am J Kidney Dis. -(-):---. ª 2014 by the National Kidney Foundation, Inc. INDEX WORDS: Pediatric; chronic kidney disease (CKD); end-stage kidney disease (ESKD); qualitative research; financial; economic; medical costs; health care expenditures; quality of life (QoL); caregiving; workforce participation; socioeconomic status (SES); Australia.
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he mortality rate in children with versus without end-stage kidney disease is 30 times higher.1,2 Children with chronic kidney disease (CKD) report lower quality of life (QoL), which appears to be worse in patients who are socioeconomically disadvantaged.3-5 Further, children of lower socioeconomic status with CKD experience higher rates of comorbid conditions6 and poorer clinical outcomes.6-8 Caring for a child with CKD places significant physical, psychosocial, and financial stress on parents.9 Parents bear the responsibility of performing timeconsuming technical procedures, such as peritoneal dialysis and supplemental enteral feeding, ensuring adherence to medication and to dietary and fluid restrictions, attending clinic appointments, and attending thrice-weekly 4- to 5-hour hemodialysis sessions, as well as advocating for their child’s health care needs and providing continuous psychological support to help their child cope with the illness and treatment.9,10 Caregivers of children with CKD experience elevated levels of psychological distress and reduced Am J Kidney Dis. 2014;-(-):---
QoL,9-12 and lower income has been found to be associated with decreased QoL among caregivers.10 This may affect the quality of care parents are able to provide, thereby affecting their child’s health outcomes.10,11
From the 1Sydney School of Public Health, The University of Sydney, Sydney; 2Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead; 3Department of Nephrology, Sydney Children’s Hospital, Randwick, NSW; 4Department of Nephrology, Royal Children’s Hospital, Brisbane, QLD; and 5 Department of Nephrology, Royal Children’s Hospital, Melbourne, VIC, Australia. Received March 18, 2014. Accepted in revised form July 28, 2014. Address correspondence to Meredith Medway, BLibStud, Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead NSW 2145, Sydney, Australia. E-mail: meredith. [email protected] 2014 by the National Kidney Foundation, Inc. 0272-6386/$36.00 http://dx.doi.org/10.1053/j.ajkd.2014.07.019 1
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Financial difficulty has been identified as a significant contributor to the stress associated with caring for a child with CKD.9-11 Health care costs and disruption to work are major contributors to economic hardship that families face.13,14 However, the particular financial stressors experienced by parents, the contribution of financial stress to their capacity to provide care for their child, and its influence on the parent’s QoL are unclear. This study aims to describe the experiences, perspectives, and beliefs of parents caring for children on the financial impact of CKD. This may inform ways to minimize the financial impact and in turn improve QoL and health outcomes for children with CKD and their caregivers.
Table 1. Characteristics of Parents Characteristic
No. (%)
Age category 20-,30 y 30-,40 y 40-,50 y 50-,60 y
1 8 15 3
Parent Mother Father
22 (82) 5 (18)
Gross weekly income A$0-599 A$600-$1,249 A$1,250-$2,000 .A$2,000
8 10 1 8
(30) (37) (4) (30)
Participants were eligible if they were a parent/caregiver of a child with CKD stages 3 to 5, on dialysis therapy (5D) or had received a kidney transplant (5T), and were English speaking. Participants were recruited through The Children’s Hospital at Westmead; Sydney Children’s Hospital, Randwick; and the Royal Children’s Hospital, Brisbane. Participants were purposively selected and identified by recruiting nephrologists to capture a range of socioeconomic status, geographic location, and ethnicity and their child’s CKD stage, sex, and age. The study was approved by the Ethics Committees of the Sydney Children’s Hospital Network and Children’s Health Services Queensland.
Highest education level Primary Secondary Trade Other certificate/diploma Bachelor’s degree/higher
2 13 3 1 8
(7) (48) (11) (4) (30)
Marital status Married/de facto Divorced/separated Single
21 (78) 3 (11) 3 (11)
Data Collection
Interview venue Hospital Home
13 (48) 14 (52)
Geographical location Metropolitan Rural
23 (85) 4 (15)
METHODS Participant Selection
A preliminary interview guide was developed based on a review of the literature on the experiences and perspectives of parents of children with CKD and other chronic illnesses, in particular the financial impact and financial coping with chronic illness.9,12,15-17 M.M. conducted a face-to-face semistructured interview with each participant at the hospital or at their home from April through September 2013. Recruitment ceased when theoretical saturation was reached; that is, when few or no new concepts were emerging in subsequent interviews. Interviews were digitally audiorecorded and transcribed.
Data Analysis Transcripts were entered into the software HyperRESEARCH, version 3.0 (ResearchWare Inc), to aid in the storage, coding, and searching of the data. We drew from the principles of grounded theory, which is an approach for developing theory of social phenomena that is grounded in the data. Following this methodology in our analysis, M.M. conducted open coding by reading the transcripts line by line; examining, conceptualizing, and categorizing the data; and assigning codes to concepts. Axial coding and constant comparisons were applied by identifying relationships between concepts and exploring similarities and differences in the data to developed analytical themes.18,19 These were mapped into a thematic schema to illustrate the connections among themes. The transcripts were read by a second investigator, A.T., who reviewed the preliminary themes to ensure that the full range of experiences and perspectives reported by participants were included.
RESULTS Recruitment and Participant Characteristics Of the 32 parents/caregivers approached, 27 (84%) agreed to be interviewed. Participant characteristics are presented in Table 1. The age range of participants was 29 to 56 (mean, 43.2 6 6.8 [SD]) years, and 22 (82%) 2
Distance to hospital 0-10 km 11-20 km 21-40 km 41-80 km .80 km
8 7 5 1 6
(4) (30) (56) (11)
(30) (30) (19) (4) (22)
Note: N 5 27.
were women. Characteristics of the children of participants are presented in Table 2. We identified 5 major themes: loss of freedom and control (prioritizing care, limiting occupational opportunities, and appreciating socioeconomic advantage), burden of sole responsibility (inability to rely on others, lack of respite, increased separation of family roles, and self-reliance), adapting for survival (vigilant budgeting, redefining normality and expectations, rechanneling resources to basic needs, and negotiating work flexibility), instability of circumstances (depleted capacity to work, unpredictability of child’s health, burden of travelrelated costs, imposition of debt, and domestic upheaval), and struggle in seeking support (“falling through the cracks” and unmet information needs). A thematic schema showing the key relationships between these themes and subthemes is displayed in Fig 1. Am J Kidney Dis. 2014;-(-):---
Financial Impact of Caring for Child With CKD Table 2. Characteristics of Children of Participating Parents No. (%)
Age category 6-9 y 10-12 y 13-15 y 16-18 y Male sex CKD Stages 3-5 Dialysis Transplant Duration of CKD 1-4 y 5-8 y 9-12 y 13-16 y $17 y
7 6 7 6
(27) (23) (27) (23)
17 (65) 6 (22) 6 (22) 14 (56) 7 6 5 6 2
(27) (23) (19) (23) (7)
Comorbid conditions Hypertension Growth deficiency Behavioral issues Developmental delay and/or intellectual disability
10 4 2 3
(37) (15) (7) (11)
Ethnic background Anglo-Celtic Aboriginal/Torres Strait Islander Middle Eastern Other European Asian
14 3 5 3 1
(56) (11) (19) (11) (4)
Note: N 5 26. Abbreviation: CKD, chronic kidney disease.
The concepts raised expressed both the financial impact and approaches to coping financially, as shown in this schema. Illustrative quotations are given in Table 3. Loss of Freedom and Control Prioritizing Care Participants perceived the demands of their child’s care to be of paramount importance. They devoted all their attention and energy to attending clinic appointments, dialysis training, caring for their child, and being present with their child during dialysis sessions. Some participants were unable to work or had to take leave without pay. “We took a major setback over that period [of dialysis] and put all our attention on [child] and the whole procedure. The income hasn’t got back to better levels and so we’re still a bit hand-to-mouth.” (Mother, 40s)
While some parents initially attempted to balance home peritoneal dialysis with home-based paid work, they found this unsustainable. Limiting Occupational Opportunities Participants endeavoring to establish or expand their own business believed that their ability to do so was Am J Kidney Dis. 2014;-(-):---
severely limited by their child’s CKD. Some felt forced to decline new work opportunities because they were uncertain about their ability to commit to the position or were too focused on their child’s medical needs to give adequate consideration to work. Some participants encountered difficulty finding employment when seeking to return to work due to their prolonged absence from the workforce. Once their child had received a transplant and was stable, some believed they should refocus on their business and career. Appreciating Socioeconomic Advantage Participants with higher household incomes believed they had more choice and control over their child’s care compared with socioeconomically disadvantaged families. Having greater financial resources allowed more spending on, for example, a wider variety of food, which participants believed gave them “the ability to have some control over the situation, which maybe other people don’t feel they have.” Having a higher level of education was believed to bring about greater confidence managing their child’s health (eg, nutritional intake). Additionally, they were able to pay for assistance with domestic duties and believed that this helped them cope.
Burden of Sole Responsibility Inability to Rely on Others Some participants believed that they had to shoulder full responsibility alone. Parents of children treated by home dialysis thought that “there’s no one that can wear our shoes for a night” given the technical complexities involved in providing care. For in-center dialysis, some believed that it was a core parental duty to be present with their child. While parents appreciated the increased flexibility and reduction in travel costs associated with peritoneal dialysis as compared with hemodialysis, they saw home dialysis as imposing an added burden in terms of work and degree of responsibility for their child’s medical care. Participants who had no relatives living close by felt unable to receive support from family and friends, which increased financial pressure due to difficulties balancing work with caregiving. Parent support groups were believed to be helpful in managing the financial impact of kidney disease because they provided an opportunity to share information about access to services and coping strategies. Lack of Respite Caring for their child was a constant commitment and some found the lack of respite from tasks, such as administering medications and attending appointments, exhausting. Participants believed this strongly 3
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Instability of circumstances
Struggle in seeking support
• Depleted capacity to work • Falling through the cracks • Unpredictability of child’s health • Unmet information needs • Imposition of debt
Burden of sole responsibility
• Domestic upheaval
• Inability to rely on others
• Burden of travel-related costs
• Lack of respite
Loss of freedom and control
Adapting for survival
• Increased separation of family roles • Self-reliance
• Prioritizing demands of care • Limiting occupational opportunities • Appreciating socio-economic advantage
Financial impact
• Vigilant budgeting • Re-defining normality and expectations
• Rechanneling resources to basic needs • Negotiating work flexibility
Financial coping
Figure 1. Thematic schema. Inability to rely on others for support, lack of respite, and prioritization of their child’s care over were strong contributors to depletion in parental capacity to work. Prioritization of their child’s care sometimes led to a demarcation of roles of caregiver and economic provider, with one parent withdrawing completely from paid employment to dedicate their time to care. The sense of “falling through the cracks” necessitated the use of coping strategies such as vigilant budgeting, rechanneling resources away from nonurgent expenses, and negotiating work flexibility. Participants thought they fell through the cracks of support systems in part in terms of lack of respite.
contributed to their inability to work. Parents of children receiving dialysis treatment found the demands of care to be particularly unrelenting and believed that respite was among the most important support required. They urgently needed respite services but were unaware of any available. “What is respite? That’s what I want to know. Nobody’s ever explained that to me. Is there someone out there that can help us?” (Mother, 40s)
Those who received respite services while their child was a dialysis patient believed it reduced their exhaustion and thus they were better able to undertake paid work. However, some participants did not access respite services because they believed that their children may be anxious about receiving care from someone else or were themselves uncomfortable with different caregivers coming into their home. Increased Separation of Family Roles Families experienced increased separation between the roles of economic provider and caregiver as a result of one parent withdrawing from work to provide care (usually mothers) and the other focusing more heavily on paid work (usually fathers) in order to compensate for this and to meet the family’s often increased financial needs. Caregivers believed this helped them to adapt financially; however, some mothers expressed that this made coping with care more difficult for them. 4
“He was trained to do the dialysis, but he didn’t do it nearly as much, because we’d say well, it’s better for one of us to put a hundred per cent in at work than two of us to put in fifty per cent.” (Mother, 40s)
Self-reliance Some participants perceived themselves as “people who don’t look for help” or who “don’t like to put a burden on anyone else.” Emotional and practical support from family or friends was readily accepted, but seeking financial support in managing their child’s CKD from people close to them was thought to be inappropriate or difficult. A few participants were ambivalent about receiving government support because they viewed such as assistance as a “safety net” to be accessed only as a last resort.
Adapting for Survival Vigilant Budgeting Participants believed that caring for a child with CKD had made them more vigilant in managing their finances. Some were cautious about setting money aside to cover the cost of traveling to the hospital. Some identified strategies they had implemented in order to manage their finances more warily, such as buying in bulk or purchasing from less expensive sources. Many expressed a need to constantly “think twice before you go and spend” and had to be cautious in their spending on necessities, namely groceries and clothing. Am J Kidney Dis. 2014;-(-):---
Financial Impact of Caring for Child With CKD Table 3. Illustrative Quotations by Theme Subtheme
Quotations
Loss of Freedom and Control Prioritizing care
“I only worked part-time so having to take time off when you’re only there a couple of days a week as it is. If you’ve got to take one of those days off, it’s difficult. If the leave isn’t there then you just don’t get paid for it. In that case, it can stretch things a bit. You’ve still got to pay to get to the hospital and put fuel in the car and everything like that. If the income is not there, things are stretched.” (Mother, 30s) “As he is self-employed, he has to work to get paid.It’s been good for a while now, but when the time comes for transplant or she is unwell, it will have to slow down again, not because of choice but because of the circumstances.” (Mother, 20s)
Limiting occupational opportunities
“After 14 years and you’re watching them growing now and it’s now a little bit of the selfishness in me going, hang on, my life’s been put on hold. My job was my children.” (Mother, 40s)
Appreciating socioeconomic advantage
“I was able to spend money on good food and extra alternative medicines or doctors, if that was the path that I was going down. I’m not saying that any of that made a difference, but it made me feel better about the whole situation, so I was probably able to put in as much effort as I wanted to without that compromising any other aspect of my life or my marriage or my other children. So it certainly gives you freedom, I suppose, and again, the education. I’m educated enough to understand. So I wasn’t relying on the health system to give me the answers, I could go and look myself. So I guess I had the ability to have some control over the situation, which maybe other people don’t feel they have.” (Mother, 40s)
Inability to rely on others
“It’s traumatic to trust somebody else with your child.” (Mother, 40s) “Even with me they don’t feel good, so how am I going to leave them with someone else?” (Mother, 30s) “The amount of money we would put toward it [childcare].we’re 100 per cent more than what we—[breaks off]. We don’t have anyone to rely on if something were to happen at any time.” (Mother, 20s)
Lack of respite
“Well I don’t know, is there—what is respite? What is that? [laughs] That’s what I want to know. Nobody’s ever explained that to me. Is that when someone else comes in or—I have no idea. Is there someone out there that can help us?” (Mother, 40s) “There’s no one that can wear our shoes for a night and there’s no break or anything like that. So respite care would definitely be something that would be I think beneficial to all parents, especially when it’s been a long time without a break from it.” (Mother, 20s) “But like I said, he’s [husband] never for once said, you go home, I’ll stay with [child]. Everything is on my shoulders.” (Mother, 50s) “It would have been easier for him [husband] to be with me and coping with everything but sometimes you just can’t. When you have a mortgage and all that sort of thing.” (Mother, 30s) “My husband was trained to do the dialysis, he could do it, but he didn’t do it nearly as much, because we’d say well, it’s better for one of us to put a hundred per cent in at work than two of us to put in fifty per cent at work. It just works better.” (Mother, 40s)
Burden of Sole Responsibility
Increased separation of family roles
Self-reliance
“I don’t love to put a burden on anyone else. They’ll be happy to, but everyone has their own issues in life. So we’ve never asked for help.” (Mother, 30s) “Having my family, or our family there to support us, to look after [sibling], has been wonderful.but not financially, we’ve always managed that on our own.” (Mother, 30s) “Financial not so much [support]. Because you feel funny, it’s like an ongoing thing, you don’t want to be grabbing from people all the time. But we do have a big family support. If we were down and we really needed help, they would help, but it’s us that feel guilty to ask. Which we don’t ask.” (Mother, 40s)
Vigilant budgeting
“.you’ve got to try and budget on the shopping which I don’t like to because I’ve got two growing boys and they like to eat my house out.” (Mother, 30s) “That is a big change, a big change to having to budget your money and fit the medications in with it. To sit there and work all that out.” (Mother, 40s) “You’ve got to think twice before you go and spend—well I do before I spend on anything.even basic clothes.” (Mother, 40s)
Redefining normality and expectations
“You’re used to paying it so it doesn’t become a problem. We budget for catheters, we budget for bags, we budget for everything—medications matter. We don’t notice it. It’s just another bill.that way you don’t feel the pain, if you see it on paper, you know it’s gone, you don’t feel the pain. So it works for us.” (Mother, 40s)
Rechanneling resources to basic needs
“We just make do but we miss out on so much.when I say make do it’s like you get fed, you’re clothed and thank god he’s not growing so much now.” (Mother, 40s) “I think we had to have a couple of breaks from our house payments and things like that as well, just because it was just something that we knew—it was the only place we had to draw money from when all the other money ran out. So things like that. Obviously you don’t choose to do them.” (Mother, 20s)
Adapting for Survival
(Continued)
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Medway et al Table 3 (Cont’d). Illustrative Quotations by Theme Subtheme
Quotations
Negotiating work flexibility
“It’s a job where you can do it by appointment, you can do it after hours, you can do it when there’s time. They’re sorting their hospital appointments and you’re sorting yours, and it’s a nice little earner without having to work in a shop where you have to attend and phone in sick or phone in.” (Mother, 40s)
Depleted capacity to work
“I feel that demands that [child] has impacted on my health. Not directly, but I know in some ways it has. I don’t know how long I’m going to feel like this. It feels like I won’t recover for a long time. So I feel like I can’t commit to anything, it’s pathetic. It’s not good. So I’m just pulling out of my commitment, and just try to rest. And that’s it. And look after the family and look after myself.” (Father, 40s) “We did peritoneal dialysis at home, which was for [child] about twelve or fourteen hours a day, seven days a week, and it was really hard then to get up the next day and do work, and feel motivated and excited about it, and carry on.” (Mother, 40s) “When [father] donated to [child], there was a time where he wasn’t working and I wasn’t working as well, because he had to recuperate, so there was no money coming in at all, so that was really difficult.” (Mother, 30s)
Unpredictability of child’s health
“So we’re in a funny position. We’re in an improved position, but there’s still, he’s still a risky guy. I find that my wife and I are very unpredictable. I’m self-employed, and my wife has a flexible part-time position, she’s got dribs and drabs sort of coming in. I was trying to do some work for someone but then I sort of got sick and then I’m feeling so unreliable. From a work perspective, I feel extremely unreliable and my wife does too.” (Father, 40s) “Not working was hard. Every time I decided, okay, right that’s it, this is the next five year plan, this is what we’re going to do, she’d end up in hospital.” (Mother, 40s)
Burden of travel-related costs
“All these trips back and forth, back and forth, back and forth. It’s not cheap on fuel. Have you seen the price of fuel these days?” (Father, 40s) “It was like, I’m going to Westmead, I need $20 of petrol there, I need another $20. I need $50 just to go to Westmead to see a doctor for an hour. Do I really want to go? Yes, I have to go. Do I really want to go? Especially when she was on monthly. Fifty dollars a month, just to go to Westmead.That doesn’t include all the other appointments, hanging around and the fuel and running backwards and forwards.” (Mother, 40s) “You have to borrow some money then you have to repay that borrowed money back. We borrowed some money a couple of times. We had to pay it back and we’re broke again. So we had to pay that back and you can’t keep doing that or you’re back in the same spot all the time. So we try and do it off our own backs and it doesn’t always work.” (Father, 40s) “We’ve got everything on a payment plan now. We never did. Every one of our insurances, everything’s on a payment plan.” (Mother, 40s)
Instability of Circumstances
Imposition of debt
Domestic upheaval
“He walked out. Then of course, the mortgages weren’t paid, the whole lot. All that basically escalated from in that first six months of diagnosis. The house was gone. the rental went, everything went, I couldn’t work, there was no way I could pay it, the whole thing went. All I had was my car. Basically we were homeless in the car.” (Mother, 40s)
Falling through the cracks
“A lot of the government services—getting support—respite or things like that—they are so hard to get and they take so long, you give up. At the moment, I have given up on just about all of them because it takes so much energy out of you and it is so upsetting. So you just learn to deal without them. Now I haven’t been bothered to call them for the past two years because whenever you call them, they just always have an excuse, never return your calls—you’re not entitled because there’s people who are worse than you. It’s just not worth it so we just don’t bother.” (Mother, 30s) “I’ve never had the carer’s payment. When [child] was on dialysis, I was told that he wasn’t considered bad enough. I didn’t get a carers payment at all. I told them that I had lost a massive amount of income and I was at home with him full time, and he had other issues, like incontinence was one of them. They told us that [child] was 17% bad which wasn’t enough, while he was on dialysis. I don’t know how they came up with 17%. I think that Centrelink are much more concerned with behavioral issues of children. There’s so many questions that are biased towards does your child throw tantrums, and is he angry, and are they difficult to manage, and he’s never done that. So I was honest, and I said no, he’s got kidney disease, which physically takes a lot of work. It hasn’t really been easy for us at all. And there’s times when you then think, oh god, why me, everybody else, they get it.” (Mother, 40s)
Unmet information needs
“Yeah we had all that done when he started—actually a couple of years after because nobody tells you anything but you find out from other people, other parents.it took a year or two before I realized. So there I think you should have someone telling you or advising you can get this, this, this. That’s not being very helpful actually.” (Mother, 40s)
Struggle in Seeking Support
(Continued)
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Financial Impact of Caring for Child With CKD Table 3 (Cont’d). Illustrative Quotations by Theme Subtheme
Quotations
“We did eventually get a. I think it was called special childcare benefit, just where your childcare fees are covered for I think it’s 12 or 13 weeks. But things like that, we weren’t ever aware of until another nurse told us about them. Because she had been in a situation where she’d had an unwell child as well and needed to do that. But those things, there seems to be a lot of benefits and things that you aren’t told about that — because that really helped at a time that we really needed it, because yeah going from paying say $120 a week for just preschool and day care to having three months of it paid for.” (Mother, 20s)
Redefining Normality and Expectations The financial limitations imposed by CKD became a new normality for some participants. They described paying health-related expenses as becoming “natural,” and something they no longer noticed. A few expressed feeling content with their level of income as long as they were able to afford necessities. Rechanneling Resources to Basic Needs Participants prioritized their expenditures on meeting the child’s medical care and the family’s basic needs. Expenses such as petrol, food, and utility bills, as well as CKD-related expenses such as medications, were perceived to be consuming all the family’s financial resources. The financial impact of CKD affected the whole family. Participants had to minimize or abstain from activities, including dining out, family holidays, and extracurricular activities for other children in the family. Some felt compelled to rechannel finances from areas such as mortgage payments in order to be able to cover immediate necessary costs. In some cases, families had to use their savings to continue to meet the family’s needs with reduced income. Rechanneling of resources in some cases took the form of prioritizing spending that improved family functioning; for instance, one participant described having redirected resources to improving their kitchen space to make preparing food, medications, and so on, for their child more efficient. Negotiating Work Flexibility Many participants described negotiating for flexibility in their employment so that income could be maintained while also enabling them to focus on their child’s care. Participants valued having an employer who understood their care commitments and who granted flexibility to be available to attend appointments and stay home when their child was unwell. Some participants changed employers or types of work in order to gain greater flexibility. Burden of Travel-Related Costs Particularly for participants who resided outside the metropolitan areas and further from the hospital, they had to adapt to the financial strain caused by petrol, food, parking, car maintenance, and other travel-related Am J Kidney Dis. 2014;-(-):---
expenses. Some participants used public transportation to go to the hospital to reduce costs, despite this being more difficult and time consuming than driving. Parents of children who had received a transplant noted significant financial relief since their child no longer had to travel frequently to the hospital for dialysis. One family required commercial flights to travel to and from the hospital and shouldered a huge financial burden as a result of this. Some parents believed professional assistance with care at home was helpful in reducing the costs incurred through travel back and forth to the hospital. Instability of Circumstances Depleted Capacity to Work Participants experienced decreased earning capacity not only as a result of prioritizing care over paid work, but also due to the mental and physical energy required to meet caring demands. Parents experienced the most severe physical depletion when their child was treated by dialysis, due to the laborious and technical demands of care. Participants who were living donors experienced loss of income and financial instability during their recovery period. One donor returned to work earlier than was medically advisable due to financial strain and consequently experienced ill health. Unpredictability of Child’s Health The unpredictability of their child’s prognosis limited participants’ abilities to make employment or business plans. While parents with children treated by dialysis thought that the time-consuming and ongoing caring responsibilities prevented them from maintaining paid work, parents of children with a kidney transplant felt insecure and uncertain about committing to work because of the unpredictability of their child’s prognosis (eg, transplant failure and side effects of immunosuppression). Participants whose child’s health had improved believed they were now able to refocus on work or explore new work opportunities, but at the same time believed themselves to be potentially unreliable in committing to work because their child’s health may suddenly deteriorate. Plans to return to work were disrupted by their child’s 7
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ill health. One mother believed that the need for her to be available should her child become unwell would disadvantage her in obtaining a job if she disclosed this to a prospective employer. Imposition of Debt Participants experienced frustration at having to deal with debt and other financial problems at a time when they believed their attention should be devoted to their child’s health and treatment. Some participants expressed appreciation for the availability of financial assistance from family members. Others struggled with ongoing debt as a result of borrowing from family. Some participants viewed borrowing money as a sign of financial desperation, but as something they would do if they needed to for the sake of their child. Domestic Upheaval Some participants experienced conflict in their family, which was believed to be caused by their child’s illness. One mother reported marital separation and collapse of the family unit following her child’s diagnosis, resulting in severe financial hardship. Another reported breakdown of domestic support structures and his business as a result of needing to relocate for his child’s treatment.
Struggle for Support Falling Through the Cracks Access to direct and indirect financial support from the government or other organizations was valued, but participants identified numerous gaps and barriers in accessing these services. Items including dietary supplements, syringes, disinfectant, etc, for which no reimbursement was able to be received, were noted as significantly adding to the family’s expenditure. One mother reported taking on additional employment specifically to cover the cost of her child’s medications. Some struggled to access timely reimbursement for travel costs. Some believed government support was helpful but inflexible. For example, benefit schemes did not consider that the amount of hours worked or child care required varied considerably from week to week. Obtaining social services was time consuming, and some participants believed these services were not worth the effort required. Some believed this was done deliberately to discourage people from applying. Participants were frustrated at being deemed ineligible for services because their child was “not severe enough” or, despite having a low income, “fell through the cracks” as a result of having assets. Because their child’s illness was not physically visible, some believed that charitable organizations were less willing to assist. 8
Unmet Information Needs Participants valued information from social workers and other staff who explained the support services for which they were eligible. However, many believed they found out about support services, such as parking permits or assistance with child care fees, only “by word of mouth” and thought there should be a systematic way in which parents were informed about all the services for which they could apply.
DISCUSSION Previous studies of other chronic disease areas have shown that chronic illness imposes significant economic hardship even in the context of a universal health care system and extensive system of social services.16,20,21 Caregivers report difficulties covering costs such as medications, transportation, and child care.16,20,21 Furthermore, previous work has shown reduced workforce participation to be a major factor in the financial impact of chronic illness.17,22 Our results indicate that these issues also are important for parents of children with CKD, and many of these difficulties are particularly pronounced for these parents due to the high burden of clinical care they shoulder. This study adds to previous research by highlighting unique aspects of the economic challenges faced by these caregivers and moreover, revealing the effects that these challenges have on parents, how they perceive these effects, and what they believe allows them to cope. Due to the technical complexities and time-consuming nature of dialysis procedures and tasks such as administering medications, many parents view caring for a child with CKD as prohibitive to sustaining employment. In addition to their chronic condition, children with CKD are susceptible to unpredictable acute illness, contributing to parents’ self-perception as insufficiently reliable for paid work. The high frequency and, for many, long distance of travel to the hospital is particularly costly and disruptive to employment, family dynamics, and routines. While previous research has documented the added costs incurred by caregivers of children with chronic illnesses, the present study also explored the interaction between the financial and QoL impact on parents. We found that coping with CKD and its financial effects entailed reduction in parents’ QoL as a result of physical and emotional exhaustion, sacrifice of fulfilment from work and of occupational opportunities, and rechanneling of financial resources away from expenses for themselves, such as social activities. Parents perceived those caring for a child with CKD to be an often-neglected group particularly vulnerable to “falling through the cracks” of support systems because they faced barriers to obtaining government and charitable assistance. To our knowledge, this is the first in-depth qualitative study to investigate the experiences and Am J Kidney Dis. 2014;-(-):---
Financial Impact of Caring for Child With CKD
perspectives of parents regarding the financial impact of and financial coping regarding CKD. The relationship between socioeconomic status, QoL, and health outcomes is complex. Our qualitative inquiry enriches our understanding by unraveling some of these complexities. However, our study has a number of limitations. Participants were predominantly mothers who were not the primary income earner in the family. Although participants from a diverse range of cultural backgrounds were included, non–English-speaking participants were excluded due to lack of resources for interpreters and to avoid potential cultural and linguistic misinterpretation. Interventions focusing on caregivers as well as patients and specifically focusing on financial aspects of the impact of CKD are needed. Previous research has demonstrated the effectiveness of providing financial counseling to caregivers of children with chronic illness to develop skills in areas such as budgeting and applying for financial assistance.23 We found that parents experienced a sense of loss of control with respect to the financial and social effects of their child’s CKD. Financial counseling interventions may assist to address this and increase parents’ self-efficacy.23 The economic impact of children’s CKD on parents is inextricable from its psychosocial impact,10,11 and interventions aiming to reduce financial stress should reflect this. Cognitive-behavioral and educational interventions have been shown to be effective in reducing parental distress and increasing coping in other chronic disease areas.24,25 Implementation with caregivers of children with CKD may reduce fatigue and psychological distress, thereby reducing withdrawal from work. Psychosocial interventions that address parental anxiety surrounding their child’s illness and care may assist caregivers to seek more external support and thus also reduce the impact on employment. Caring for a child with CKD has long-term ramifications for parents’ career, employability, and earning capacity. Consistent with previous research,26,27 we found caregivers often are unaware of respite services available and even when accessing such services, often believe them to be inappropriate or inadequate. Parental perspectives on these services suggest the importance of longer-term availability and consistency and improved training of staff. We found that the cost of caring for a child with CKD, in terms of both financial resources and time, often results in severe reductions in parents’ social and leisure activities. Loss of social interaction is worsened by withdrawal from work. Participants identified parent support groups as a key service they believed would assist them to cope. Greater Am J Kidney Dis. 2014;-(-):---
availability of organized caregiver groups would provide respite and the opportunity to form support networks and could be usefully integrated with group psychosocial interventions. Our results suggest that this may reduce the financial and psychosocial effects of care by providing a forum for sharing information, coping strategies, and practical support. Multidisciplinary care that prioritizes the needs of caregivers as well as patients and provides financial and social as well as medical support is required to improve children’s clinical and QoL outcomes. The assistance of renal social workers is essential in empowering parents to navigate social service and other support systems, manage transportation to and from the hospital in a cost-effective and practical manner, cope with financial stress, improve social support networks, and sustain employment.28 Greater focus on proactive delivery of information on subsidies, concessions, and services may be needed to ensure that factors such as lower literacy do not systematically disadvantage those most in need. For families identified as at particular risk of financial hardship, a case management approach may be of benefit to provide longer-term support integrated with delivery of the child’s clinical care. Research investigating the perspectives of non– English-speaking caregivers on the financial impact of CKD is urgently needed. These caregivers are likely to face particular challenges accessing information and services, may lack nearby family support, and are likely to offer unique perspectives regarding culturally appropriate interventions and respite services. A prospective cohort study is underway to determine the prevalence of economic hardship among parents of children with CKD.29 To further quantify the financial burden among parents of children with CKD, a survey that includes the range of financial stressors identified in our study could be conducted to assess the prevalence and magnitude of the financial impact in this population. Our results could be used to develop a screening questionnaire to routinely assess financial burden and hardship among caregivers of children with CKD. This may assist in planning and targeting services provided by social workers and other renal staff. In addition, future research should endeavor to establish the distance from the child’s center at which travel-related costs become a significant burden for families. This could inform policy on improved reimbursement of travel-related costs for these families. Caring for a child with CKD has a profound socioeconomic impact. Parents focus their time, energy, and resources on meeting the complex and ongoing needs of their child and struggle with both obtaining support from those close to them and obtaining government and charitable support. Strategies to assist 9
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parents in retaining the option of workforce participation and improvements to social services to ensure the needs of this disadvantaged group are adequately met are needed to improve the financial and psychosocial well-being of parents and thereby the clinical and QoL outcomes of children with CKD.
ACKNOWLEDGEMENTS Support: This project was funded by Kidney Health Australia (grant ID: PG31 12). The funders of this study had no role in study design; collection, analysis, and interpretation of data; writing the report; or the decision to submit the report for publication. Financial Disclosure: The authors declare that they have no other relevant financial interests. Contributions: Research idea and study design: AT, GW, MM, JCC, SK, FM, SM, AW; data acquisition: MM; data analysis and interpretation: MM, AT, GW. Each author contributed important intellectual content during manuscript drafting or revision and accepts accountability for the overall work by ensuring that questions pertaining to the accuracy or integrity of any portion of the work are appropriately investigated and resolved. MM takes responsibility that this study has been reported honestly, accurately, and transparently; that no important aspects of the study have been omitted; and that any discrepancies from the study as planned have been explained.
REFERENCES 1. McDonald SP, Craig JC. Long-term survival of children with end-stage renal disease. N Engl J Med. 2004;350(26):2654-2662. 2. Groothoff JW, Gruppen MP, Offringa M, et al. Mortality and causes of death of end-stage renal disease in children: a Dutch cohort study. Kidney Int. 2002;61(2):621-629. 3. Gerson AC, Wentz A, Abraham AG, et al. Health-related quality of life of children with mild to moderate chronic kidney disease. Pediatrics. 2010;125(2):e349-e357. 4. McKenna AM, Keating LE, Vigneux A, Stevens S, Williams A, Geary DF. Quality of life in children with chronic kidney disease—patient and caregiver assessments. Nephrol Dial Transplant. 2006;21(7):1899-1905. 5. Goldstein S, Graham N, Burwinkle T, Warady B, Farrah R, Varni J. Health-related quality of life in pediatric patients with ESRD. Pediatr Nephrol. 2006;21(6):846-850. 6. Hidalgo G, Ng DK, Moxey-Mims M, et al. Association of income level with kidney disease severity and progression among children and adolescents with CKD: a report from the Chronic Kidney Disease in Children (CKiD) Study. Am J Kidney Dis. 2013;62(6):1087-1094. 7. Furth SL, Garg PP, Neu AM, Hwang W, Fivush BA, Powe NR. Racial differences in access to the kidney transplant waiting list for children and adolescents with end-stage renal disease. Pediatrics. 2000;106(4):756-761. 8. Minnick ML, Boynton S, Ndirangu J, Furth S. Sex, race, and socioeconomic disparities in kidney disease in children. Semin Nephrol. 2010;30(1):26-32. 9. Tong A, Lowe A, Sainsbury P, Craig J. Parental perspectives on caring for a child with chronic kidney disease: an in-depth interview study. Child Care Health Dev. 2010;36(4):549-557. 10. Tsai T-C, Liu S, Tsai J, Chou L. Psychosocial effects on caregivers for children on chronic peritoneal dialysis. Kidney Int. 2006;70(11):1983-1987.
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11. Friedman A. The broader burden of end-stage renal disease on children and their families. Kidney Int. 2006;70(11):1893-1894. 12. Nicholas DB. Meanings of maternal caregiving: children with end stage renal disease. Qual Health Res. 1999;9(4):468-478. 13. Smith SR, Soliday E. The effects of parental chronic kidney disease on the family. Family Relations. 2001;50(2):171-177. 14. Essue B, Wong G, Chapman J, Li Q, Jan S. How are patients managing with the costs of care for chronic kidney disease in Australia? A cross-sectional study. BMC Nephrol. 2013;14(1):5. 15. Tong A, Lowe A, Sainsbury P, Craig JC. Experiences of parents who have children with chronic kidney disease: a systematic review of qualitative studies. Pediatrics. 2008;121(2): 349-360. 16. Jeon Y-H, Essue B, Jan S, Wells R, Whitworth JA. Economic hardship associated with managing chronic illness: a qualitative inquiry. BMC Health Serv Res. 2009;9(1):182. 17. Yen L, McRae I, Jeon YH, Essue B, Herath P. The impact of chronic illness on workforce participation and the need for assistance with household tasks and personal care by older Australians. Health Soc Care Comm. 2011;19(5):485-494. 18. Charmaz K. ‘Discovering’ chronic illness: using grounded theory. Soc Sci Med. 1990;30(11):1161-1172. 19. Corbin JM, Strauss A. Grounded theory research: procedures, canons, and evaluative criteria. Qual Sociol. 1990;13(1):3-21. 20. Essue B, Kelly P, Roberts M, Leeder S, Jan S. We can’t afford my chronic illness! The out-of-pocket burden associated with managing chronic obstructive pulmonary disease in western Sydney, Australia. J Health Serv Res Policy. 2011;16(4):226-231. 21. Heath JA, Lintuuran RM, Rigguto G, Tikotlian N, McCarthy M. Childhood cancer: its impact and financial costs for Australian families. J Pediatr Hematol Oncol. 2006;23(5): 439-448. 22. Lukemeyer A, Meyers MK, Smeeding T. Expensive children in poor families: out-of-pocket expenditures for the care of disabled and chronically ill children in welfare families. J Marriage Fam. 2000;62(2):399-415. 23. Worley G, Rosenfeld LR, Lipscomb J. Financial counseling for families of children with chronic disabilities. Dev Med Child Neurol. 1991;33(8):679-689. 24. Bougea A, Darviri C, Alexopoulos E. A systematic review of randomized controlled interventions for parents’ distress in pediatric leukemia. ISRN Oncol. 2011;2011:959247. 25. Kieckhefer GM, Trahms CM, Churchill SS, Kratz L, Uding N, Villareale N. A randomized clinical trial of the building on family strengths program: an education program for parents of children with chronic health conditions. Matern Child Health J. 2014;18(3):563-574. 26. Neufeld SM, Query B, Drummond JE. Respite care users who have children with chronic conditions: are they getting a break? J Pediatr Nurs. 2001;16(4):234-244. 27. Sherman BR. Impact of home-based respite care on families of children with chronic illnesses. Child Health Care. 1995;24(1):33-45. 28. Dobrof J, Dolinko A, Lichtiger E, Uribarri J, Epstein I. Dialysis patient characteristics and outcomes: the complexity of social work practice with the end stage renal disease population. Soc Work Health Care. 2002;33(3-4):105-128. 29. Wong G, Medway M, Didsbury M, et al. Health and wealth in children and adolescents with chronic kidney disease (K-CAD study). BMC Public Health. 2014;14(1):307.
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T
he mortality rate in children with versus without end-stage kidney disease is 30 times higher.1,2 Children with chronic kidney disease (CKD) report lower quality of life (QoL), which appears to be worse in patients who are socioeconomically disadvantaged.3-5 Further, children of lower socioeconomic status with CKD experience higher rates of comorbid conditions6 and poorer clinical outcomes.6-8 Caring for a child with CKD places significant physical, psychosocial, and financial stress on parents.9 Parents bear the responsibility of performing timeconsuming technical procedures, such as peritoneal dialysis and supplemental enteral feeding, ensuring adherence to medication and to dietary and fluid restrictions, attending clinic appointments, and attending thrice-weekly 4- to 5-hour hemodialysis sessions, as well as advocating for their child’s health care needs and providing continuous psychological support to help their child cope with the illness and treatment.9,10 Caregivers of children with CKD experience elevated levels of psychological distress and reduced Am J Kidney Dis. 2014;-(-):---
QoL,9-12 and lower income has been found to be associated with decreased QoL among caregivers.10 This may affect the quality of care parents are able to provide, thereby affecting their child’s health outcomes.10,11
From the 1Sydney School of Public Health, The University of Sydney, Sydney; 2Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead; 3Department of Nephrology, Sydney Children’s Hospital, Randwick, NSW; 4Department of Nephrology, Royal Children’s Hospital, Brisbane, QLD; and 5 Department of Nephrology, Royal Children’s Hospital, Melbourne, VIC, Australia. Received March 18, 2014. Accepted in revised form July 28, 2014. Address correspondence to Meredith Medway, BLibStud, Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead NSW 2145, Sydney, Australia. E-mail: meredith. [email protected] 2014 by the National Kidney Foundation, Inc. 0272-6386/$36.00 http://dx.doi.org/10.1053/j.ajkd.2014.07.019 1
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Financial difficulty has been identified as a significant contributor to the stress associated with caring for a child with CKD.9-11 Health care costs and disruption to work are major contributors to economic hardship that families face.13,14 However, the particular financial stressors experienced by parents, the contribution of financial stress to their capacity to provide care for their child, and its influence on the parent’s QoL are unclear. This study aims to describe the experiences, perspectives, and beliefs of parents caring for children on the financial impact of CKD. This may inform ways to minimize the financial impact and in turn improve QoL and health outcomes for children with CKD and their caregivers.
Table 1. Characteristics of Parents Characteristic
No. (%)
Age category 20-,30 y 30-,40 y 40-,50 y 50-,60 y
1 8 15 3
Parent Mother Father
22 (82) 5 (18)
Gross weekly income A$0-599 A$600-$1,249 A$1,250-$2,000 .A$2,000
8 10 1 8
(30) (37) (4) (30)
Participants were eligible if they were a parent/caregiver of a child with CKD stages 3 to 5, on dialysis therapy (5D) or had received a kidney transplant (5T), and were English speaking. Participants were recruited through The Children’s Hospital at Westmead; Sydney Children’s Hospital, Randwick; and the Royal Children’s Hospital, Brisbane. Participants were purposively selected and identified by recruiting nephrologists to capture a range of socioeconomic status, geographic location, and ethnicity and their child’s CKD stage, sex, and age. The study was approved by the Ethics Committees of the Sydney Children’s Hospital Network and Children’s Health Services Queensland.
Highest education level Primary Secondary Trade Other certificate/diploma Bachelor’s degree/higher
2 13 3 1 8
(7) (48) (11) (4) (30)
Marital status Married/de facto Divorced/separated Single
21 (78) 3 (11) 3 (11)
Data Collection
Interview venue Hospital Home
13 (48) 14 (52)
Geographical location Metropolitan Rural
23 (85) 4 (15)
METHODS Participant Selection
A preliminary interview guide was developed based on a review of the literature on the experiences and perspectives of parents of children with CKD and other chronic illnesses, in particular the financial impact and financial coping with chronic illness.9,12,15-17 M.M. conducted a face-to-face semistructured interview with each participant at the hospital or at their home from April through September 2013. Recruitment ceased when theoretical saturation was reached; that is, when few or no new concepts were emerging in subsequent interviews. Interviews were digitally audiorecorded and transcribed.
Data Analysis Transcripts were entered into the software HyperRESEARCH, version 3.0 (ResearchWare Inc), to aid in the storage, coding, and searching of the data. We drew from the principles of grounded theory, which is an approach for developing theory of social phenomena that is grounded in the data. Following this methodology in our analysis, M.M. conducted open coding by reading the transcripts line by line; examining, conceptualizing, and categorizing the data; and assigning codes to concepts. Axial coding and constant comparisons were applied by identifying relationships between concepts and exploring similarities and differences in the data to developed analytical themes.18,19 These were mapped into a thematic schema to illustrate the connections among themes. The transcripts were read by a second investigator, A.T., who reviewed the preliminary themes to ensure that the full range of experiences and perspectives reported by participants were included.
RESULTS Recruitment and Participant Characteristics Of the 32 parents/caregivers approached, 27 (84%) agreed to be interviewed. Participant characteristics are presented in Table 1. The age range of participants was 29 to 56 (mean, 43.2 6 6.8 [SD]) years, and 22 (82%) 2
Distance to hospital 0-10 km 11-20 km 21-40 km 41-80 km .80 km
8 7 5 1 6
(4) (30) (56) (11)
(30) (30) (19) (4) (22)
Note: N 5 27.
were women. Characteristics of the children of participants are presented in Table 2. We identified 5 major themes: loss of freedom and control (prioritizing care, limiting occupational opportunities, and appreciating socioeconomic advantage), burden of sole responsibility (inability to rely on others, lack of respite, increased separation of family roles, and self-reliance), adapting for survival (vigilant budgeting, redefining normality and expectations, rechanneling resources to basic needs, and negotiating work flexibility), instability of circumstances (depleted capacity to work, unpredictability of child’s health, burden of travelrelated costs, imposition of debt, and domestic upheaval), and struggle in seeking support (“falling through the cracks” and unmet information needs). A thematic schema showing the key relationships between these themes and subthemes is displayed in Fig 1. Am J Kidney Dis. 2014;-(-):---
Financial Impact of Caring for Child With CKD Table 2. Characteristics of Children of Participating Parents No. (%)
Age category 6-9 y 10-12 y 13-15 y 16-18 y Male sex CKD Stages 3-5 Dialysis Transplant Duration of CKD 1-4 y 5-8 y 9-12 y 13-16 y $17 y
7 6 7 6
(27) (23) (27) (23)
17 (65) 6 (22) 6 (22) 14 (56) 7 6 5 6 2
(27) (23) (19) (23) (7)
Comorbid conditions Hypertension Growth deficiency Behavioral issues Developmental delay and/or intellectual disability
10 4 2 3
(37) (15) (7) (11)
Ethnic background Anglo-Celtic Aboriginal/Torres Strait Islander Middle Eastern Other European Asian
14 3 5 3 1
(56) (11) (19) (11) (4)
Note: N 5 26. Abbreviation: CKD, chronic kidney disease.
The concepts raised expressed both the financial impact and approaches to coping financially, as shown in this schema. Illustrative quotations are given in Table 3. Loss of Freedom and Control Prioritizing Care Participants perceived the demands of their child’s care to be of paramount importance. They devoted all their attention and energy to attending clinic appointments, dialysis training, caring for their child, and being present with their child during dialysis sessions. Some participants were unable to work or had to take leave without pay. “We took a major setback over that period [of dialysis] and put all our attention on [child] and the whole procedure. The income hasn’t got back to better levels and so we’re still a bit hand-to-mouth.” (Mother, 40s)
While some parents initially attempted to balance home peritoneal dialysis with home-based paid work, they found this unsustainable. Limiting Occupational Opportunities Participants endeavoring to establish or expand their own business believed that their ability to do so was Am J Kidney Dis. 2014;-(-):---
severely limited by their child’s CKD. Some felt forced to decline new work opportunities because they were uncertain about their ability to commit to the position or were too focused on their child’s medical needs to give adequate consideration to work. Some participants encountered difficulty finding employment when seeking to return to work due to their prolonged absence from the workforce. Once their child had received a transplant and was stable, some believed they should refocus on their business and career. Appreciating Socioeconomic Advantage Participants with higher household incomes believed they had more choice and control over their child’s care compared with socioeconomically disadvantaged families. Having greater financial resources allowed more spending on, for example, a wider variety of food, which participants believed gave them “the ability to have some control over the situation, which maybe other people don’t feel they have.” Having a higher level of education was believed to bring about greater confidence managing their child’s health (eg, nutritional intake). Additionally, they were able to pay for assistance with domestic duties and believed that this helped them cope.
Burden of Sole Responsibility Inability to Rely on Others Some participants believed that they had to shoulder full responsibility alone. Parents of children treated by home dialysis thought that “there’s no one that can wear our shoes for a night” given the technical complexities involved in providing care. For in-center dialysis, some believed that it was a core parental duty to be present with their child. While parents appreciated the increased flexibility and reduction in travel costs associated with peritoneal dialysis as compared with hemodialysis, they saw home dialysis as imposing an added burden in terms of work and degree of responsibility for their child’s medical care. Participants who had no relatives living close by felt unable to receive support from family and friends, which increased financial pressure due to difficulties balancing work with caregiving. Parent support groups were believed to be helpful in managing the financial impact of kidney disease because they provided an opportunity to share information about access to services and coping strategies. Lack of Respite Caring for their child was a constant commitment and some found the lack of respite from tasks, such as administering medications and attending appointments, exhausting. Participants believed this strongly 3
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Instability of circumstances
Struggle in seeking support
• Depleted capacity to work • Falling through the cracks • Unpredictability of child’s health • Unmet information needs • Imposition of debt
Burden of sole responsibility
• Domestic upheaval
• Inability to rely on others
• Burden of travel-related costs
• Lack of respite
Loss of freedom and control
Adapting for survival
• Increased separation of family roles • Self-reliance
• Prioritizing demands of care • Limiting occupational opportunities • Appreciating socio-economic advantage
Financial impact
• Vigilant budgeting • Re-defining normality and expectations
• Rechanneling resources to basic needs • Negotiating work flexibility
Financial coping
Figure 1. Thematic schema. Inability to rely on others for support, lack of respite, and prioritization of their child’s care over were strong contributors to depletion in parental capacity to work. Prioritization of their child’s care sometimes led to a demarcation of roles of caregiver and economic provider, with one parent withdrawing completely from paid employment to dedicate their time to care. The sense of “falling through the cracks” necessitated the use of coping strategies such as vigilant budgeting, rechanneling resources away from nonurgent expenses, and negotiating work flexibility. Participants thought they fell through the cracks of support systems in part in terms of lack of respite.
contributed to their inability to work. Parents of children receiving dialysis treatment found the demands of care to be particularly unrelenting and believed that respite was among the most important support required. They urgently needed respite services but were unaware of any available. “What is respite? That’s what I want to know. Nobody’s ever explained that to me. Is there someone out there that can help us?” (Mother, 40s)
Those who received respite services while their child was a dialysis patient believed it reduced their exhaustion and thus they were better able to undertake paid work. However, some participants did not access respite services because they believed that their children may be anxious about receiving care from someone else or were themselves uncomfortable with different caregivers coming into their home. Increased Separation of Family Roles Families experienced increased separation between the roles of economic provider and caregiver as a result of one parent withdrawing from work to provide care (usually mothers) and the other focusing more heavily on paid work (usually fathers) in order to compensate for this and to meet the family’s often increased financial needs. Caregivers believed this helped them to adapt financially; however, some mothers expressed that this made coping with care more difficult for them. 4
“He was trained to do the dialysis, but he didn’t do it nearly as much, because we’d say well, it’s better for one of us to put a hundred per cent in at work than two of us to put in fifty per cent.” (Mother, 40s)
Self-reliance Some participants perceived themselves as “people who don’t look for help” or who “don’t like to put a burden on anyone else.” Emotional and practical support from family or friends was readily accepted, but seeking financial support in managing their child’s CKD from people close to them was thought to be inappropriate or difficult. A few participants were ambivalent about receiving government support because they viewed such as assistance as a “safety net” to be accessed only as a last resort.
Adapting for Survival Vigilant Budgeting Participants believed that caring for a child with CKD had made them more vigilant in managing their finances. Some were cautious about setting money aside to cover the cost of traveling to the hospital. Some identified strategies they had implemented in order to manage their finances more warily, such as buying in bulk or purchasing from less expensive sources. Many expressed a need to constantly “think twice before you go and spend” and had to be cautious in their spending on necessities, namely groceries and clothing. Am J Kidney Dis. 2014;-(-):---
Financial Impact of Caring for Child With CKD Table 3. Illustrative Quotations by Theme Subtheme
Quotations
Loss of Freedom and Control Prioritizing care
“I only worked part-time so having to take time off when you’re only there a couple of days a week as it is. If you’ve got to take one of those days off, it’s difficult. If the leave isn’t there then you just don’t get paid for it. In that case, it can stretch things a bit. You’ve still got to pay to get to the hospital and put fuel in the car and everything like that. If the income is not there, things are stretched.” (Mother, 30s) “As he is self-employed, he has to work to get paid.It’s been good for a while now, but when the time comes for transplant or she is unwell, it will have to slow down again, not because of choice but because of the circumstances.” (Mother, 20s)
Limiting occupational opportunities
“After 14 years and you’re watching them growing now and it’s now a little bit of the selfishness in me going, hang on, my life’s been put on hold. My job was my children.” (Mother, 40s)
Appreciating socioeconomic advantage
“I was able to spend money on good food and extra alternative medicines or doctors, if that was the path that I was going down. I’m not saying that any of that made a difference, but it made me feel better about the whole situation, so I was probably able to put in as much effort as I wanted to without that compromising any other aspect of my life or my marriage or my other children. So it certainly gives you freedom, I suppose, and again, the education. I’m educated enough to understand. So I wasn’t relying on the health system to give me the answers, I could go and look myself. So I guess I had the ability to have some control over the situation, which maybe other people don’t feel they have.” (Mother, 40s)
Inability to rely on others
“It’s traumatic to trust somebody else with your child.” (Mother, 40s) “Even with me they don’t feel good, so how am I going to leave them with someone else?” (Mother, 30s) “The amount of money we would put toward it [childcare].we’re 100 per cent more than what we—[breaks off]. We don’t have anyone to rely on if something were to happen at any time.” (Mother, 20s)
Lack of respite
“Well I don’t know, is there—what is respite? What is that? [laughs] That’s what I want to know. Nobody’s ever explained that to me. Is that when someone else comes in or—I have no idea. Is there someone out there that can help us?” (Mother, 40s) “There’s no one that can wear our shoes for a night and there’s no break or anything like that. So respite care would definitely be something that would be I think beneficial to all parents, especially when it’s been a long time without a break from it.” (Mother, 20s) “But like I said, he’s [husband] never for once said, you go home, I’ll stay with [child]. Everything is on my shoulders.” (Mother, 50s) “It would have been easier for him [husband] to be with me and coping with everything but sometimes you just can’t. When you have a mortgage and all that sort of thing.” (Mother, 30s) “My husband was trained to do the dialysis, he could do it, but he didn’t do it nearly as much, because we’d say well, it’s better for one of us to put a hundred per cent in at work than two of us to put in fifty per cent at work. It just works better.” (Mother, 40s)
Burden of Sole Responsibility
Increased separation of family roles
Self-reliance
“I don’t love to put a burden on anyone else. They’ll be happy to, but everyone has their own issues in life. So we’ve never asked for help.” (Mother, 30s) “Having my family, or our family there to support us, to look after [sibling], has been wonderful.but not financially, we’ve always managed that on our own.” (Mother, 30s) “Financial not so much [support]. Because you feel funny, it’s like an ongoing thing, you don’t want to be grabbing from people all the time. But we do have a big family support. If we were down and we really needed help, they would help, but it’s us that feel guilty to ask. Which we don’t ask.” (Mother, 40s)
Vigilant budgeting
“.you’ve got to try and budget on the shopping which I don’t like to because I’ve got two growing boys and they like to eat my house out.” (Mother, 30s) “That is a big change, a big change to having to budget your money and fit the medications in with it. To sit there and work all that out.” (Mother, 40s) “You’ve got to think twice before you go and spend—well I do before I spend on anything.even basic clothes.” (Mother, 40s)
Redefining normality and expectations
“You’re used to paying it so it doesn’t become a problem. We budget for catheters, we budget for bags, we budget for everything—medications matter. We don’t notice it. It’s just another bill.that way you don’t feel the pain, if you see it on paper, you know it’s gone, you don’t feel the pain. So it works for us.” (Mother, 40s)
Rechanneling resources to basic needs
“We just make do but we miss out on so much.when I say make do it’s like you get fed, you’re clothed and thank god he’s not growing so much now.” (Mother, 40s) “I think we had to have a couple of breaks from our house payments and things like that as well, just because it was just something that we knew—it was the only place we had to draw money from when all the other money ran out. So things like that. Obviously you don’t choose to do them.” (Mother, 20s)
Adapting for Survival
(Continued)
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Medway et al Table 3 (Cont’d). Illustrative Quotations by Theme Subtheme
Quotations
Negotiating work flexibility
“It’s a job where you can do it by appointment, you can do it after hours, you can do it when there’s time. They’re sorting their hospital appointments and you’re sorting yours, and it’s a nice little earner without having to work in a shop where you have to attend and phone in sick or phone in.” (Mother, 40s)
Depleted capacity to work
“I feel that demands that [child] has impacted on my health. Not directly, but I know in some ways it has. I don’t know how long I’m going to feel like this. It feels like I won’t recover for a long time. So I feel like I can’t commit to anything, it’s pathetic. It’s not good. So I’m just pulling out of my commitment, and just try to rest. And that’s it. And look after the family and look after myself.” (Father, 40s) “We did peritoneal dialysis at home, which was for [child] about twelve or fourteen hours a day, seven days a week, and it was really hard then to get up the next day and do work, and feel motivated and excited about it, and carry on.” (Mother, 40s) “When [father] donated to [child], there was a time where he wasn’t working and I wasn’t working as well, because he had to recuperate, so there was no money coming in at all, so that was really difficult.” (Mother, 30s)
Unpredictability of child’s health
“So we’re in a funny position. We’re in an improved position, but there’s still, he’s still a risky guy. I find that my wife and I are very unpredictable. I’m self-employed, and my wife has a flexible part-time position, she’s got dribs and drabs sort of coming in. I was trying to do some work for someone but then I sort of got sick and then I’m feeling so unreliable. From a work perspective, I feel extremely unreliable and my wife does too.” (Father, 40s) “Not working was hard. Every time I decided, okay, right that’s it, this is the next five year plan, this is what we’re going to do, she’d end up in hospital.” (Mother, 40s)
Burden of travel-related costs
“All these trips back and forth, back and forth, back and forth. It’s not cheap on fuel. Have you seen the price of fuel these days?” (Father, 40s) “It was like, I’m going to Westmead, I need $20 of petrol there, I need another $20. I need $50 just to go to Westmead to see a doctor for an hour. Do I really want to go? Yes, I have to go. Do I really want to go? Especially when she was on monthly. Fifty dollars a month, just to go to Westmead.That doesn’t include all the other appointments, hanging around and the fuel and running backwards and forwards.” (Mother, 40s) “You have to borrow some money then you have to repay that borrowed money back. We borrowed some money a couple of times. We had to pay it back and we’re broke again. So we had to pay that back and you can’t keep doing that or you’re back in the same spot all the time. So we try and do it off our own backs and it doesn’t always work.” (Father, 40s) “We’ve got everything on a payment plan now. We never did. Every one of our insurances, everything’s on a payment plan.” (Mother, 40s)
Instability of Circumstances
Imposition of debt
Domestic upheaval
“He walked out. Then of course, the mortgages weren’t paid, the whole lot. All that basically escalated from in that first six months of diagnosis. The house was gone. the rental went, everything went, I couldn’t work, there was no way I could pay it, the whole thing went. All I had was my car. Basically we were homeless in the car.” (Mother, 40s)
Falling through the cracks
“A lot of the government services—getting support—respite or things like that—they are so hard to get and they take so long, you give up. At the moment, I have given up on just about all of them because it takes so much energy out of you and it is so upsetting. So you just learn to deal without them. Now I haven’t been bothered to call them for the past two years because whenever you call them, they just always have an excuse, never return your calls—you’re not entitled because there’s people who are worse than you. It’s just not worth it so we just don’t bother.” (Mother, 30s) “I’ve never had the carer’s payment. When [child] was on dialysis, I was told that he wasn’t considered bad enough. I didn’t get a carers payment at all. I told them that I had lost a massive amount of income and I was at home with him full time, and he had other issues, like incontinence was one of them. They told us that [child] was 17% bad which wasn’t enough, while he was on dialysis. I don’t know how they came up with 17%. I think that Centrelink are much more concerned with behavioral issues of children. There’s so many questions that are biased towards does your child throw tantrums, and is he angry, and are they difficult to manage, and he’s never done that. So I was honest, and I said no, he’s got kidney disease, which physically takes a lot of work. It hasn’t really been easy for us at all. And there’s times when you then think, oh god, why me, everybody else, they get it.” (Mother, 40s)
Unmet information needs
“Yeah we had all that done when he started—actually a couple of years after because nobody tells you anything but you find out from other people, other parents.it took a year or two before I realized. So there I think you should have someone telling you or advising you can get this, this, this. That’s not being very helpful actually.” (Mother, 40s)
Struggle in Seeking Support
(Continued)
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Financial Impact of Caring for Child With CKD Table 3 (Cont’d). Illustrative Quotations by Theme Subtheme
Quotations
“We did eventually get a. I think it was called special childcare benefit, just where your childcare fees are covered for I think it’s 12 or 13 weeks. But things like that, we weren’t ever aware of until another nurse told us about them. Because she had been in a situation where she’d had an unwell child as well and needed to do that. But those things, there seems to be a lot of benefits and things that you aren’t told about that — because that really helped at a time that we really needed it, because yeah going from paying say $120 a week for just preschool and day care to having three months of it paid for.” (Mother, 20s)
Redefining Normality and Expectations The financial limitations imposed by CKD became a new normality for some participants. They described paying health-related expenses as becoming “natural,” and something they no longer noticed. A few expressed feeling content with their level of income as long as they were able to afford necessities. Rechanneling Resources to Basic Needs Participants prioritized their expenditures on meeting the child’s medical care and the family’s basic needs. Expenses such as petrol, food, and utility bills, as well as CKD-related expenses such as medications, were perceived to be consuming all the family’s financial resources. The financial impact of CKD affected the whole family. Participants had to minimize or abstain from activities, including dining out, family holidays, and extracurricular activities for other children in the family. Some felt compelled to rechannel finances from areas such as mortgage payments in order to be able to cover immediate necessary costs. In some cases, families had to use their savings to continue to meet the family’s needs with reduced income. Rechanneling of resources in some cases took the form of prioritizing spending that improved family functioning; for instance, one participant described having redirected resources to improving their kitchen space to make preparing food, medications, and so on, for their child more efficient. Negotiating Work Flexibility Many participants described negotiating for flexibility in their employment so that income could be maintained while also enabling them to focus on their child’s care. Participants valued having an employer who understood their care commitments and who granted flexibility to be available to attend appointments and stay home when their child was unwell. Some participants changed employers or types of work in order to gain greater flexibility. Burden of Travel-Related Costs Particularly for participants who resided outside the metropolitan areas and further from the hospital, they had to adapt to the financial strain caused by petrol, food, parking, car maintenance, and other travel-related Am J Kidney Dis. 2014;-(-):---
expenses. Some participants used public transportation to go to the hospital to reduce costs, despite this being more difficult and time consuming than driving. Parents of children who had received a transplant noted significant financial relief since their child no longer had to travel frequently to the hospital for dialysis. One family required commercial flights to travel to and from the hospital and shouldered a huge financial burden as a result of this. Some parents believed professional assistance with care at home was helpful in reducing the costs incurred through travel back and forth to the hospital. Instability of Circumstances Depleted Capacity to Work Participants experienced decreased earning capacity not only as a result of prioritizing care over paid work, but also due to the mental and physical energy required to meet caring demands. Parents experienced the most severe physical depletion when their child was treated by dialysis, due to the laborious and technical demands of care. Participants who were living donors experienced loss of income and financial instability during their recovery period. One donor returned to work earlier than was medically advisable due to financial strain and consequently experienced ill health. Unpredictability of Child’s Health The unpredictability of their child’s prognosis limited participants’ abilities to make employment or business plans. While parents with children treated by dialysis thought that the time-consuming and ongoing caring responsibilities prevented them from maintaining paid work, parents of children with a kidney transplant felt insecure and uncertain about committing to work because of the unpredictability of their child’s prognosis (eg, transplant failure and side effects of immunosuppression). Participants whose child’s health had improved believed they were now able to refocus on work or explore new work opportunities, but at the same time believed themselves to be potentially unreliable in committing to work because their child’s health may suddenly deteriorate. Plans to return to work were disrupted by their child’s 7
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ill health. One mother believed that the need for her to be available should her child become unwell would disadvantage her in obtaining a job if she disclosed this to a prospective employer. Imposition of Debt Participants experienced frustration at having to deal with debt and other financial problems at a time when they believed their attention should be devoted to their child’s health and treatment. Some participants expressed appreciation for the availability of financial assistance from family members. Others struggled with ongoing debt as a result of borrowing from family. Some participants viewed borrowing money as a sign of financial desperation, but as something they would do if they needed to for the sake of their child. Domestic Upheaval Some participants experienced conflict in their family, which was believed to be caused by their child’s illness. One mother reported marital separation and collapse of the family unit following her child’s diagnosis, resulting in severe financial hardship. Another reported breakdown of domestic support structures and his business as a result of needing to relocate for his child’s treatment.
Struggle for Support Falling Through the Cracks Access to direct and indirect financial support from the government or other organizations was valued, but participants identified numerous gaps and barriers in accessing these services. Items including dietary supplements, syringes, disinfectant, etc, for which no reimbursement was able to be received, were noted as significantly adding to the family’s expenditure. One mother reported taking on additional employment specifically to cover the cost of her child’s medications. Some struggled to access timely reimbursement for travel costs. Some believed government support was helpful but inflexible. For example, benefit schemes did not consider that the amount of hours worked or child care required varied considerably from week to week. Obtaining social services was time consuming, and some participants believed these services were not worth the effort required. Some believed this was done deliberately to discourage people from applying. Participants were frustrated at being deemed ineligible for services because their child was “not severe enough” or, despite having a low income, “fell through the cracks” as a result of having assets. Because their child’s illness was not physically visible, some believed that charitable organizations were less willing to assist. 8
Unmet Information Needs Participants valued information from social workers and other staff who explained the support services for which they were eligible. However, many believed they found out about support services, such as parking permits or assistance with child care fees, only “by word of mouth” and thought there should be a systematic way in which parents were informed about all the services for which they could apply.
DISCUSSION Previous studies of other chronic disease areas have shown that chronic illness imposes significant economic hardship even in the context of a universal health care system and extensive system of social services.16,20,21 Caregivers report difficulties covering costs such as medications, transportation, and child care.16,20,21 Furthermore, previous work has shown reduced workforce participation to be a major factor in the financial impact of chronic illness.17,22 Our results indicate that these issues also are important for parents of children with CKD, and many of these difficulties are particularly pronounced for these parents due to the high burden of clinical care they shoulder. This study adds to previous research by highlighting unique aspects of the economic challenges faced by these caregivers and moreover, revealing the effects that these challenges have on parents, how they perceive these effects, and what they believe allows them to cope. Due to the technical complexities and time-consuming nature of dialysis procedures and tasks such as administering medications, many parents view caring for a child with CKD as prohibitive to sustaining employment. In addition to their chronic condition, children with CKD are susceptible to unpredictable acute illness, contributing to parents’ self-perception as insufficiently reliable for paid work. The high frequency and, for many, long distance of travel to the hospital is particularly costly and disruptive to employment, family dynamics, and routines. While previous research has documented the added costs incurred by caregivers of children with chronic illnesses, the present study also explored the interaction between the financial and QoL impact on parents. We found that coping with CKD and its financial effects entailed reduction in parents’ QoL as a result of physical and emotional exhaustion, sacrifice of fulfilment from work and of occupational opportunities, and rechanneling of financial resources away from expenses for themselves, such as social activities. Parents perceived those caring for a child with CKD to be an often-neglected group particularly vulnerable to “falling through the cracks” of support systems because they faced barriers to obtaining government and charitable assistance. To our knowledge, this is the first in-depth qualitative study to investigate the experiences and Am J Kidney Dis. 2014;-(-):---
Financial Impact of Caring for Child With CKD
perspectives of parents regarding the financial impact of and financial coping regarding CKD. The relationship between socioeconomic status, QoL, and health outcomes is complex. Our qualitative inquiry enriches our understanding by unraveling some of these complexities. However, our study has a number of limitations. Participants were predominantly mothers who were not the primary income earner in the family. Although participants from a diverse range of cultural backgrounds were included, non–English-speaking participants were excluded due to lack of resources for interpreters and to avoid potential cultural and linguistic misinterpretation. Interventions focusing on caregivers as well as patients and specifically focusing on financial aspects of the impact of CKD are needed. Previous research has demonstrated the effectiveness of providing financial counseling to caregivers of children with chronic illness to develop skills in areas such as budgeting and applying for financial assistance.23 We found that parents experienced a sense of loss of control with respect to the financial and social effects of their child’s CKD. Financial counseling interventions may assist to address this and increase parents’ self-efficacy.23 The economic impact of children’s CKD on parents is inextricable from its psychosocial impact,10,11 and interventions aiming to reduce financial stress should reflect this. Cognitive-behavioral and educational interventions have been shown to be effective in reducing parental distress and increasing coping in other chronic disease areas.24,25 Implementation with caregivers of children with CKD may reduce fatigue and psychological distress, thereby reducing withdrawal from work. Psychosocial interventions that address parental anxiety surrounding their child’s illness and care may assist caregivers to seek more external support and thus also reduce the impact on employment. Caring for a child with CKD has long-term ramifications for parents’ career, employability, and earning capacity. Consistent with previous research,26,27 we found caregivers often are unaware of respite services available and even when accessing such services, often believe them to be inappropriate or inadequate. Parental perspectives on these services suggest the importance of longer-term availability and consistency and improved training of staff. We found that the cost of caring for a child with CKD, in terms of both financial resources and time, often results in severe reductions in parents’ social and leisure activities. Loss of social interaction is worsened by withdrawal from work. Participants identified parent support groups as a key service they believed would assist them to cope. Greater Am J Kidney Dis. 2014;-(-):---
availability of organized caregiver groups would provide respite and the opportunity to form support networks and could be usefully integrated with group psychosocial interventions. Our results suggest that this may reduce the financial and psychosocial effects of care by providing a forum for sharing information, coping strategies, and practical support. Multidisciplinary care that prioritizes the needs of caregivers as well as patients and provides financial and social as well as medical support is required to improve children’s clinical and QoL outcomes. The assistance of renal social workers is essential in empowering parents to navigate social service and other support systems, manage transportation to and from the hospital in a cost-effective and practical manner, cope with financial stress, improve social support networks, and sustain employment.28 Greater focus on proactive delivery of information on subsidies, concessions, and services may be needed to ensure that factors such as lower literacy do not systematically disadvantage those most in need. For families identified as at particular risk of financial hardship, a case management approach may be of benefit to provide longer-term support integrated with delivery of the child’s clinical care. Research investigating the perspectives of non– English-speaking caregivers on the financial impact of CKD is urgently needed. These caregivers are likely to face particular challenges accessing information and services, may lack nearby family support, and are likely to offer unique perspectives regarding culturally appropriate interventions and respite services. A prospective cohort study is underway to determine the prevalence of economic hardship among parents of children with CKD.29 To further quantify the financial burden among parents of children with CKD, a survey that includes the range of financial stressors identified in our study could be conducted to assess the prevalence and magnitude of the financial impact in this population. Our results could be used to develop a screening questionnaire to routinely assess financial burden and hardship among caregivers of children with CKD. This may assist in planning and targeting services provided by social workers and other renal staff. In addition, future research should endeavor to establish the distance from the child’s center at which travel-related costs become a significant burden for families. This could inform policy on improved reimbursement of travel-related costs for these families. Caring for a child with CKD has a profound socioeconomic impact. Parents focus their time, energy, and resources on meeting the complex and ongoing needs of their child and struggle with both obtaining support from those close to them and obtaining government and charitable support. Strategies to assist 9
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parents in retaining the option of workforce participation and improvements to social services to ensure the needs of this disadvantaged group are adequately met are needed to improve the financial and psychosocial well-being of parents and thereby the clinical and QoL outcomes of children with CKD.
ACKNOWLEDGEMENTS Support: This project was funded by Kidney Health Australia (grant ID: PG31 12). The funders of this study had no role in study design; collection, analysis, and interpretation of data; writing the report; or the decision to submit the report for publication. Financial Disclosure: The authors declare that they have no other relevant financial interests. Contributions: Research idea and study design: AT, GW, MM, JCC, SK, FM, SM, AW; data acquisition: MM; data analysis and interpretation: MM, AT, GW. Each author contributed important intellectual content during manuscript drafting or revision and accepts accountability for the overall work by ensuring that questions pertaining to the accuracy or integrity of any portion of the work are appropriately investigated and resolved. MM takes responsibility that this study has been reported honestly, accurately, and transparently; that no important aspects of the study have been omitted; and that any discrepancies from the study as planned have been explained.
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