965 schools were less than happy to have her because of the medical complications she posed We had to give very detailed lessons to the staff at day care about what to do if her tube became infected o[.]
50 The Spectrum of Patient and Caregiver Experiences schools were less than happy to have her because of the medical complications she posed We had to give very detailed lessons to the staff at day care about what to if her tube became infected or came out Her preschool teacher refused to be responsible for medical emergencies, so we had to train another person from the administration At home, we had to keep her in a crib and diapers for much longer than she would have normally because we were afraid of her getting up at night and pulling out her tube Most nights we were woken by alarms because she had rolled over in her sleep and the tube was kinked Because she was also tube fed, four out of seven nights a week she would be throwing up My husband and I would team up with one of us holding her over the soiled bed, still hooked to the PD machine, while the other one changed the sheets We bought bed sheets in bulk because we went through them so quickly I don’t think anyone in the family had a full night’s sleep for the entire year that she was on PD before her transplant We devoted a room just for the supplies – so many boxes! They stretched to the ceiling! The amount of care we needed to take to ensure that our child didn’t get infected – from the masks, the washing, to the ‘not opening the door while you’re hooking her up.’ It was nerve-racking But it was a relief to know that PD was eliminating more waste from her system than the hemodialysis Robert’s Mother: Our decision to peritoneal dialysis was an easy one I had so many questions about what the best thing for Robert would be but it all boiled down to one thing We lived in a very rural state that is often snowy in the winter The only way we could go home would be if we learned to PD on our own and flew back for appointments every month Learning to PD was not quick or easy Robert had to heal after having the PD tube inserted 965 before PD could be started I would go to PD school while Robert was receiving hemodialysis It looks easier in the books and diagrams than it is in real life when you are tired and the machine is beeping and you are trying to figure out why and how to fix it The sterile technique required was also very challenging Everything about dialysis was hard There was so much to worry about I remember packing dialysis supplies into plastic bags to load into the back of the truck so that we could make the drive home from the Ronald McDonald House My parents spent hours at our home rearranging bedrooms so that there would be a room for my son and all of his supplies, and so that he could start dialysis as soon as we got home I remember cutting a hole in our bathroom wall so that we could drain into the septic system instead of the kitchen sink I remember trying to time dialysis so that my son could go to church, schools, and activities with friends I remember being told yet again that his phosphorus level was too high, and we needed to work even harder at managing his diet I remember trying to keep track of the supplies and order them during the “order window” for our delivery Box 50.6 Financial Burden Lily’s Mother: We relocated to a different state for 3 years so that our daughter could receive the very best nephrology care, and so that our older daughter could be cared for by her grandparents We also enrolled our older daughter in a full-time preschool while I was at the hospital with Lily During those 3 years, my husband flew back and forth regularly to his job in a different state Thankfully, we were able to afford the curveball that life had thrown at us Anna’s Mother: Dialysis was a life saver, yet was incredibly disruptive to our 966 lives My husband is an entrepreneur and he had to close his business to take a job that had insurance I had to go on family leave to spend my time taking Anna to and from dialysis appointments Eventually I returned to work part-time, but was unable to work fulltime because of her medical needs Robert’s Mother: Flying to the hospital every month was a challenge both financially and physically It takes a lot of planning to make sure that you take the right supplies for the trip I often had to repack our bags because the dialysate bags weighed more than what the airline would allow in a suitcase It is hard to take a PD machine through an airport security checkpoint The Patient Experience A Tong et al smaller than their peers – “I’m a teenager but get treated like a dumb kid because I’m so small I hate it when people say, ‘Oh, what a nice little girl!’” [18] They feel inferior, and some boys in particular have concerns about being less “masculine” [12] Sickly and Weak Compared with their well siblings and peers, children on dialysis perceive that they are weaker and less able to participate in activities They are unable to keep up with others because of their ill-health, fatigue, and lack of energy – “They are healthier than me, but I’m weak Because of my disease, I feel different They can whatever they want But I can’t I have to come to a dialysis centre three times a week” [19] Some feel ashamed about being the “kidney patient” and choose not to disclose their diagnosis to others They lose their once-held notion of youthful invincibility and instead feel vulnerable Look, we’re like Frankenstein It’s having all these tubes stuck into us They’re trying to make us like zombies [17] Injustice Some question why they have CKD and feel that it is unfair to have to live with the disease and have to dialysis, particularly because the disease was not their fault They describe dialysis as having “robbed” them of the lifestyle they wanted Body Image and Physical Appearance Some children and adolescents feel self-conscious about the appearance of the catheters, fistulas, and cannulas required for dialysis access and the surgical scars – “It can make you a bit like self- conscious if you have the tube You worry that people can see it through your clothes or the scars, like all the scars, when you go to the beach or something you worry that people are looking at your scars I suffer with people looking at my scars, I don’t really like them looking at my scars” [12] Some attempt to conceal their catheter under their clothing They describe themselves as being a “freak” [18] or “weird,” believing that they look like “Frankenstein…and zombies” [17]; and being teased by friends – “when my friends see my fistula they jeer me by saying ‘what is this, you are like an engine, where is your power socket?’ And I avoid them” [19] Some worry about being shorter and Being a Burden Some children on dialysis believe that they are a burden on their families – “I feel as if I’m a burden on my family members’ shoulder” [19] They harbor guilt for having to depend on their parents and siblings for medical care and support, daily tasks, and for depriving their families of the freedom to what they wanted such as travelling Some feel at fault for being a financial burden on their family – “It affected both economics and morale My father worried a lot, my mother had stomach problems It is difficult economically to travel to the hemodialysis centre” [19] Some regard themselves as a disappointment to their parents because they cannot achieve or meet their expectations in the areas of academics or sports “I’m like I’m sorry for being born, I’m sorry for doing dialysis, you don’t know how it feels [My parents] say stuff like I’m not doing anything with my life” [12] Feeling Different 50 The Spectrum of Patient and Caregiver Experiences Loss of Control A prisoner to the machine [20] Prognostic Uncertainty Some children and adolescents on dialysis worry about hospitalization and the need for surgical procedures – “going from living a normal life, from what I knew, to being in hospital most of the time, and having surgery done every now and then, I don’t like it” [12] Some have fears about their own mortality – “I’m home alone, then I’d probably die on the couch I fear that Just pass out and don’t wake up That’s what I fear” [12] and “I have to constantly lie down This makes me feel I’m going to die” [19] The uncertainty about their chances of receiving a kidney transplant can cause angst and distress, while at the same time they fear the pain and complications that may occur after transplant including graft loss and having to return to dialysis – “I’m thinking oh I’m not going to get a transplant so I’m not going to bother with going through that effort just to know that everything’s just gonna go downhill again” [12]; as well as death – “I don’t like how I am at risk of it dying again and then I am going to have to go into surgery and then what are we going to do – so … that’s what I don’t like really I don’t like being at risk of dying” [21] Some children worry about their potential living kidney donor – “I’m still worried about the transplant, worried about the possibility of something happening to [my brother] I don’t want to lose my only brother” [12] Relying on Parental Caregivers Children depend on their parents to help with dialysis, medications, and attending clinical appointments – “My parents are very involved in caring for me and my kidney disease; I depend on them a lot” [22] However, some are frustrated and feel like a “baby” [22] when they believe their parents are “super protective” [23] and did not trust them to manage or make choices about their own treatment Dependence on the Dialysis Machine Being forced to undergo the constant, grueling, and 967 “relentless” [20] regimen of dialysis for survival caused some children and adolescents to feel frustrated and helpless Some refer to themselves as “puppets pulled by strings, forever managed by hoses and tubes” [17] They lose a sense of bodily integrity and “intactness” [17] in having a body “full of holes” [20] and controlled by medical interventions Unbearable and Debilitating Symptoms Dialysis- related symptoms such as headache, fatigue, and itch can be intolerable – “The machine is too bad I have a headache after dialysis sessions My blood pressure sometimes drops I feel exhausted and I can’t walk” [19] Limiting Future Possibilities Particularly for adolescents, they feel anxious that dialysis can threaten their ability to work or pursue their career goals – “It’s always been a military career for me and nothing else, and the thing is that this kidney puts that whole dream and that whole lifestyle at risk…that’s like the only career I’ve ever wanted, I can’t think of myself doing anything else This [dialysis] seems to have taken a lot of things away” [12] They have concerns about being able to establish a relationship with a partner and how dialysis impacts fertility – “With my future, I’m mostly worried about relationships Will I ever meet a guy who’ll be there for me no matter what? Will he care if I’m still doing dialysis?” [12] Lifestyle Restrictions I would have wished to be normal and see how my life would have been if I didn’t get [kidney disease] I’d be a better student, a straight-A student [24] Social Isolation Children and adolescents on dialysis can feel socially isolated as a consequence of being ill, having to dialysis, attend clinical appointments, and being frequently hospitalized for complications They are often absent from school and cannot participate in extracurricular or recreational activities with peers – “you feel tired every day, you can’t anything, and A Tong et al 968 you’re so distanced from your friends, like they’re off enjoying being eighteen, going to parties and everything, and I’m here stuck doing dialysis” [12] They feel excluded from what their friends are able to do – “I dialysis every night so I can’t go to sleepovers, camp, or anything…[I feel] left out! … You just feel like you can’t anything and [can’t] go out by yourself” [24] For those doing in-center hemodialysis, they feel trapped and stuck – “When I came here to the hospital, I felt like I was trapped in a prison and I can’t anything about it I hate it and I’m sick of the same place Over and over again doing the same thing, same place, etc.” [12] Also, some are frustrated in having to be cautious, such as avoiding swimming with a PD catheter, because they would be excluded from joining in activities with their friends Being Absent from School As a consequence of the fatigue from doing dialysis, some children and adolescents struggle to attend school and engage in study Some feel ashamed about their poor results and fear other children teasing or “laughing” [25] at them for being behind in their studies Some encounter a lack of understanding and pressure in the school environment – “I hate how people are always on my back at school When I tell them the reason why I can’t full time, they just say I use dialysis as an excuse” [12] Some younger children worried about their ability to continue schooling – “I can’t sleep at nights I always think what would I if I can’t recover and I can’t go to the high school” [19] Managing Treatment It’s my dialysis and nobody else’s [26] Taking Ownership Some adolescents want ownership of their dialysis and to be more independent in managing their treatment; and to be able to integrate and minimize the disruption of dialysis in their daily lives They believe it is important to be given the flexibility and be empowered with technical confidence through training and support to manage dialysis, and to be able to adjust the treatment based on their symptoms and lifestyle Particularly for those on home hemodialysis, they can “base my dialysis times around my lifestyle” [12] Communication and Involvement in Decision- Making Some want opportunities for more involvement in decision-making about their treatment, including dialysis, medications, diet, surgical procedures, and kidney transplantation Some feel they often have no choice and just accept the necessity of having “needles, growth hormone, or surgery” [23] They feel intimidated because they expect they may be ignored, judged, or reprimanded by clinicians and parents if they voice their preferences – “I don’t talk to doctors a lot I just sit there and let mum talk” [23] Adhering to Treatment Some resent and struggle to adhere to the dietary and fluid restrictions because it interferes with their lives – “The main thing is that you can’t drink as much as you like It was hard to play football this year because dialysis interfered with my practice time” [24] They feel frustrated, particularly if they are reprimanded by their parents or clinicians for not adhering to their diet and fluid recommendations Regarding medications, some find it difficult to remember to take medications, to swallow the medications, and bear the side effects – “some medications make me have vertigo and nausea” [19] Certain medications can be difficult to take as they make children feel sick – “I didn’t take my tablets because they made me sick Oh they are disgusting! I took a sip and I threw up They said if I didn’t drink it I wouldn’t be able to eat I still ate” [23] Some children and adolescents are embarrassed about taking medications in front of others Some find it patronizing and frustrating if their doctors doubt that they are taking medications Coping Strategies [It’s hard], but you persevere through it and you learn You gain from the experience and you grow through it It’s very much a growing experience I 50 The Spectrum of Patient and Caregiver Experiences just try to live my life to the fullest as possible every day I know kids in the hospital for whom this is so bad They say if they hadn’t gotten sick or if they had done this or that, they wouldn’t have gotten kidney failure But I don’t think about what I could have done I think about what I can now [22] Determination and Self-Awareness Some children and adolescents refuse to allow dialysis to dictate and constrain their lives by trying to live as normally as they could – “if there’s something that I want to do, I go ahead and it; I don’t let my kidney disease stop me” [22] Some regard dialysis as a job – “I kind of think of it as a job I feel I’m going to work, because it is like working, because I’m setting up my machine, taking myself off and leaving” [26] Over time, they gain awareness about their own resilience, maturity, and strength they had developed whilst on dialysis – “I didn’t mind going back to dialysis very much because I did get to mature a lot more as a person within a quick vicinity of time” [12] Participating in Activities To overcome the constraints and stress of dialysis, some make efforts to engage in various activities including walking, talking with others, and listening to music – “I listen to music sometimes just to get my frustration out I might go out … to volunteer to get away from the atmosphere I’m always surrounded by I might talk to one of my close friends, maybe even a family member” [24] For some who had to give up activities prior to commencing dialysis (e.g., swimming and contact sports), they chose different sports or activities they were able to Hope for Kidney Transplant Whilst on dialysis, some wait in hope for a kidney transplant, which would allow them to regain independence and live a normal life – “It would make me feel better, like make me feel stronger” [21] Social Support Children on dialysis value the social, emotional, and practical support from family members and friends, who provided them reassurance, comfort, and encouragement Some appreciate that their siblings and friends regarded them as “normal” [22] 969 The Caregiver Experience Parents of children on dialysis can experience emotional turmoil, uncertainty about their child’s prognosis, and loss of control in having to relinquish aspects of their child’s care to clinicians [15, 27–29] They also contend with changes in family dynamics, including spousal relationships, and lifestyle restrictions [15] From the parental perspective, the burden of caregiving encompasses having to meet the demands of medical care, overcoming challenges of providing adequate nutrition while adhering to diet and fluid restrictions, organizing logistics including transportation and accommodation, comprehending overwhelming and complex information, managing the psychosocial and educational needs of their child, and dealing with financial hardship [15, 16, 27–32] The domains of the caregiver experience covered in this chapter will include: emotional turmoil and uncertainty, loss of control, change in family dynamics, lifestyle restrictions, caregiver burden, financial burden, and personal growth The stories of five mothers caring for a child on dialysis illustrate each of these domains (Boxes 50.1, 50.2, 50.3, 50.4, 50.5, and 50.6) The names of the children on dialysis, Lily, Robert, Thomas, Anna and Jacob, have been changed to protect their identities Emotional Turmoil and Uncertainty Initial Diagnosis Parents of children on dialysis face many different emotions, particularly shock, at the time of diagnosis [32] They are often thrown into the caregiver role without warning and feel expected to understand complex medical information very quickly [28, 32] – “You don’t remember at the time because you are shocked and you are, like, in a shadow; you can’t think at that moment because it’s just bombarded with all this bad information” [32] Parents ask themselves questions such as “Why is this happening to my child?” and “How long will my child be on dialysis?” They wonder about their child’s future and if everything will eventually be A Tong et al 970 okay Selected excerpts from real life parental stories that illustrate the range of emotions faced by caregivers upon initial diagnosis are provided in Box 50.1 Uncertainty About the Future Caregivers can feel overwhelmed about the future of their child on dialysis They wonder if a transplant will be possible [32] It can be devastating for parents if their child has to remain on or return to dialysis They may also worry about morbidity and mortality of their child on dialysis [32] (Box 50.1) Loss of Control Loss of Childhood Milestones Parents mourn the loss of a “normal” childhood for their child on dialysis Developmental milestones including eating, walking, talking, bathing, and growing are often delayed during dialysis Parents are also concerned about the long-term consequences of dialysis on the child’s future health, academic development, and relationships [13, 23] (Box 50.2) Trust in the Clinician and Care Team Parents need to feel comfortable with their child’s care team [31], particularly as they need to relinquish control of their child to clinicians [15] The relationships forged with the doctors, nurses, and other support staff are incredibly important “I’ve been living with this for 3 years; I know what I’m talking about It sort of reached a point with me that I thought, we’re losing control over our own child … I made the decision that I’m calling the shots … we really had to sort of push our way to the front” [29] They appreciated clinicians who provided clear and comprehensive information [32] Some parents travel or relocate to access quality care for their child (Box 50.2) Change in Family Dynamics Having a child on dialysis imposes stress on relationships within the family Some parents experience strain in their marriage, and may feel unable to devote adequate attention to their other children because of the medical and healthcare needs of their child on dialysis [28] Strain on Marriage and Relationships Some caregivers struggle with disagreements with their partner in providing care for their child on dialysis They are aware of the need to take “time outs” with partners to maintain healthy relationships but find it difficult to find the time to so [33] Some rely on support from extended family to share caregiving responsibilities (Box 50.3) Sibling Inattention and Neglect Having to explain dialysis to siblings is a challenge for caregivers Some feel they must justify the extra time, attention, and resources needed to care for their child on dialysis Some worry about sibling resentment and neglect [15] and look for ways to incorporate siblings into daily life, and to ensure that they spend one-on-one time with their other children (Box 50.3) Need for Support Despite being overwhelmed by their child being on dialysis, some caregivers find it difficult to ask for or accept help from family and friends Caregivers can feel isolated because of the lack of understanding from others about the medical challenges the family is facing [15, 28] Some turn to social media to communicate updates and to convey the most important information regarding their child’s medical situation (Box 50.3) Lifestyle Restrictions The grueling dialysis regimen and complex fluid and dietary requirements restricts freedom to travel, participate in social activities, and pursue career goals [15, 32] The multiple challenges of managing fluid and dietary requirements include feeding through the NG or G-tube, which can cause discomfort; and adhering to dietary and fluid restrictions, whilst at the same time ensuring that their child is receiving adequate nutrition [28] Parents also need to obtain supplies for dial- ... and nothing else, and the thing is that this kidney puts that whole dream and that whole lifestyle at risk…that’s like the only career I’ve ever wanted, I can’t think of myself doing anything... for whom this is so bad They say if they hadn’t gotten sick or if they had done this or that, they wouldn’t have gotten kidney failure But I don’t think about what I could have done I think about... like, in a shadow; you can’t think at that moment because it’s just bombarded with all this bad information” [32] Parents ask themselves questions such as “Why is this happening to my child?”