BACKGROUND:

Parents of adolescents and young adults (AYAs) with serious illness experience enormous stress as they navigate their child’s illness. In this study, we aimed to elucidate AYA parental perspectives on the advanced cancer experience, including what parents find challenging and their sources of strength.

METHODS:

Parents of AYAs aged 14 to 24 years old being treated for recurrent or refractory advanced cancer at a large academic center completed demographic surveys and 1:1 semi-structured interviews between December 2017 and July 2018. Conventional content analysis was used by 2 coders to analyze transcriptions, with a third reviewer adjudicating. Thematic networks analysis was then used to extrapolate basic and organizing themes.

RESULTS:

A total of 22 parents participated. The majority were female, non-Hispanic, and married; 23% (n = 5) were from racial minority groups. We identified 3 organizing themes related to navigating parents’ experiences: (1) what we do to love our child, (2) what challenges us, and (3) how we keep our heart focused on what matters most. Despite substantial uncertainty about their child’s future, parents endorsed growth and gratitude as they focused on the ways they showed love for their child during this difficult time.

CONCLUSIONS:

Parents of AYAs with advanced cancer experience many parenting challenges, elucidating some of the vulnerabilities and magnifying the sources of strength among parents of children transitioning to adulthood during serious illness. This research has important implications for how we build programs that support and sustain parents’ well-being during their child’s serious illness.

What’s Known on This Subject:

Parents of adolescents and young adults with advanced cancer face numerous stressors that impact the child and their parents' well-being. Understanding the perspectives of parents is essential to improving care among families and children transitioning to adulthood with serious illness.

What This Study Adds:

Parents of adolescents and young adults with advanced cancer focused on what they do to love their child, what challenges them, and how they keep their heart focused on what matters most in this study. Despite the difficulties, parents found growth and gratitude.

Parents of children with serious illness experience enormous stress related to their child’s medical condition that impacts their well-being and that of their child.13  A particularly challenging time to navigate a child’s serious illness is during adolescence and young adulthood.4  This period of transition is characterized by the development of autonomy, social and sexual identity, and independence from one’s parents.5,6  When adolescents and young adults (AYAs) are seriously ill, parents must balance their child’s developmental and illness-related needs.7  In these situations, parents play a central role not only in direct care for their AYA but also during critical decision-making and in emotionally supporting their child.810  This is further complicated by the additional roles parents fill, such as caring for siblings and generating family financial resources.11  It is critical that we understand the perspectives of parents of AYAs in these extraordinarily difficult situations to improve care for both the parent and the patient.

Parents of AYAs with advanced cancer are an important population to explore these issues as prognoses, time lines, and trajectories are uncertain.4  A diagnosis of advanced cancer, defined as cancer that is recurrent or refractory to treatment,12  poses additional challenges for parents as they also consider how the illness and their child’s possible death impact the entire family. Decisions must be made while balancing hopes, worries, and quality of life in the face of setbacks.8,1315 

In this study, we aimed to explore parental perspectives on the challenges, worries, and sources of strength endorsed by parents of AYAs with advanced cancer.

The “Exploring the Concept of ‘a Good Death’” study was designed to gather diverse perspectives about how to improve end-of-life care for AYAs with cancer. It included 4 stakeholder cohorts: health care providers, AYAs, bereaved parents, and nonbereaved parents. In this study, we describe findings from the cohort of nonbereaved parents. Eligible participants included English-speaking parents or legal guardians of AYAs between the ages of 14 and 25 years who received treatment of advanced cancer between December 2017 and July 2018. Advanced cancer was defined as the AYA meeting ≥1 of the following criteria: (1) relapsed or recurrent disease after initial treatment, (2) refractory disease, (3) eligibility for a phase 1 trial, (4) enrollment in hospice or receiving palliative care, or (5) patients with <50% likelihood of long-term survival as judged by an oncologist.12  Families were screened during oncology clinic visits at Seattle Children’s Hospital. Parents were consented by a trained clinical research coordinator and completed a 12-item demographic survey. Parents were subsequently interviewed in-person or by phone by a trained health services and qualitative methodologist (K.S.B.), who had no previous relationship with the families. Interviews lasted 24 to 137 minutes (average = 63 minutes) and explored parent perspectives about communication and information sharing, worries, and strengths or supports (Table 1). Demographic information including the child’s age, sex, advanced cancer type, and date of death (if applicable) were extracted from the child’s medical record. The Seattle Children’s Hospital Institutional Review Board approved this study.

TABLE 1

Semistructured Interview Items

TopicItem
Communication and information sharing I am wondering if we can talk specifically about when you learned that the cancer [had not responded the way your doctors had hoped, had come back, or was an aggressive type]. 
 Can you share if and how you talked to [patient’s name] about what was happening? 
 What have you told him or her? 
 How did you make the decision to talk about what was happening? 
 Can you tell me about the conversation(s)? 
 When you think about the past month or so, has the way you talk about this (or not) within your family changed at all? 
Worries What worried or worries you most? 
 What things do you notice about your son or daughter, if anything, that causes you worry or concerns? 
Strengths and supports Who helped you during this time? 
 When things get hard, what helps you most? 
TopicItem
Communication and information sharing I am wondering if we can talk specifically about when you learned that the cancer [had not responded the way your doctors had hoped, had come back, or was an aggressive type]. 
 Can you share if and how you talked to [patient’s name] about what was happening? 
 What have you told him or her? 
 How did you make the decision to talk about what was happening? 
 Can you tell me about the conversation(s)? 
 When you think about the past month or so, has the way you talk about this (or not) within your family changed at all? 
Worries What worried or worries you most? 
 What things do you notice about your son or daughter, if anything, that causes you worry or concerns? 
Strengths and supports Who helped you during this time? 
 When things get hard, what helps you most? 

We followed the Standards for Reporting Qualitative Research guidelines for the conduct, analysis, and reporting of results.16  The study team included physician-researchers with training in palliative care (J.F.B., A.T., and A.R.R.), critical care (J.K.), and pediatric oncology (M.T. and A.R.R.), as well as a health services investigator with expertise in qualitative research (K.S.B.). Interviews were transcribed verbatim and entered into Dedoose software for analysis.17  We used content analysis for development of the initial codebook and coding structure.18  Specifically, transcripts were read in full, preliminary codes were developed, and then codes were cross-referenced with an existing codebook from the bereaved parents cohort. Cross-referencing was accomplished over a series of meetings with the full study team for the purpose of facilitating other analyzes across different cohorts. During this process, additional codes were added for (1) conflict, (2) culture, (3) multidisciplinary aspects of care, and (4) decision-making. All primary coding was completed by one of two reviewers (J.F.B. or A.T.). After primary coding, the secondary coder (J.F.B., A.T., or K.S.B.) suggested coding changes. The primary reviewer then went back to resolve changes. For any unresolved questions, consensus meetings were held with all coders until agreement was reached.

After coding was complete, excerpts were analyzed by using thematic networks analysis.19  This is a technique for conducting thematic analysis in which the researcher uses a structured process to identify basic themes from coded interview data that are then systematically grouped into higher-order organizing themes.19  Only basic themes derived from multiple parents were included to create overarching organizing themes. Throughout the 7-month iterative process of data analysis, all questions and areas of disagreement were discussed monthly with the full study team.

A total of 22 parents participated. All parents approached consented, although 2 additional parents were later unable to complete interviews because their AYA became too ill. Parents were a median age of 47 years old (interquartile range [IQR]: 42.5–51), and AYAs were a median of 17.5 years old (IQR: 15–19) at the time of their parent’s interview. The majority of parents were female, with AYAs with hematologic malignancies (Table 2).

TABLE 2

Parent and AYA Demographics and Clinical Characteristics

VariableResult (N = 22)
Parent age, median (IQR), y 47 (42.5–51) 
Parent gender female, n (%) 19 (86) 
Parent ethnicity Non-Hispanic or Latino, n (%) 16/18 (89) 
Parent race, n (%)  
 White 12 (55) 
 Black or African American 1 (5) 
 Asian American 4 (18) 
 Unknown 5 (23) 
Parent level of education, n (%)  
 High school diploma 1 (5) 
 Associate or trade school 9 (50) 
 Undergraduate degree 4 (22) 
 Graduate degree 4 (22) 
Annual household income, n (%)  
 <$50 000 6 (27) 
 $51 000 to $100 000 3 (14) 
 $101 000 to $150 000 1 (5) 
 >$150 000 3 (14) 
 Unknown 9 (41) 
Marital status, n (%)  
 Married 12 (55) 
 Divorced 4 (22) 
 Never married 2 (9) 
 Unknown 4 (22) 
No. children (including AYA with advanced cancer), n (%)  
 1 1 (5) 
 2–3 11 (50) 
 4–5 6 (27) 
 Unknown 4 (22) 
Parent self-described as spiritual and/or religious, n (%) 15/18 (83) 
Parent religious affiliation, n (%)  
 Catholic 6 (27) 
 Christian 7 (32) 
 Latter Day Saints 2 (9) 
 Hindu 1 (5) 
 Unknown 6 (27) 
AYA age at time of parent interview, median (IQR), y 17.5 (15–19) 
AYA gender female, n (%) 8 (36) 
AYA primary advanced cancer diagnosis, n (%)  
 Leukemia or lymphoma 14 (64) 
 CNS tumor 4 (18) 
 Non-CNS solid tumor 4 (18) 
AYA died within 12 mo of parent interview, n (%) 3 (14) 
VariableResult (N = 22)
Parent age, median (IQR), y 47 (42.5–51) 
Parent gender female, n (%) 19 (86) 
Parent ethnicity Non-Hispanic or Latino, n (%) 16/18 (89) 
Parent race, n (%)  
 White 12 (55) 
 Black or African American 1 (5) 
 Asian American 4 (18) 
 Unknown 5 (23) 
Parent level of education, n (%)  
 High school diploma 1 (5) 
 Associate or trade school 9 (50) 
 Undergraduate degree 4 (22) 
 Graduate degree 4 (22) 
Annual household income, n (%)  
 <$50 000 6 (27) 
 $51 000 to $100 000 3 (14) 
 $101 000 to $150 000 1 (5) 
 >$150 000 3 (14) 
 Unknown 9 (41) 
Marital status, n (%)  
 Married 12 (55) 
 Divorced 4 (22) 
 Never married 2 (9) 
 Unknown 4 (22) 
No. children (including AYA with advanced cancer), n (%)  
 1 1 (5) 
 2–3 11 (50) 
 4–5 6 (27) 
 Unknown 4 (22) 
Parent self-described as spiritual and/or religious, n (%) 15/18 (83) 
Parent religious affiliation, n (%)  
 Catholic 6 (27) 
 Christian 7 (32) 
 Latter Day Saints 2 (9) 
 Hindu 1 (5) 
 Unknown 6 (27) 
AYA age at time of parent interview, median (IQR), y 17.5 (15–19) 
AYA gender female, n (%) 8 (36) 
AYA primary advanced cancer diagnosis, n (%)  
 Leukemia or lymphoma 14 (64) 
 CNS tumor 4 (18) 
 Non-CNS solid tumor 4 (18) 
AYA died within 12 mo of parent interview, n (%) 3 (14) 

CNS, central nervous system.

Parent responses to semi-structured interview items about parenting experiences fell into 3 organizing themes (Fig 1). Organizing themes were named from the parent’s point of view to emphasize their perspective and represent the collation of the majority of parents’ experiences. These organizing themes are described in detail below and are shown with representative excerpts in Table 3.

FIGURE 1

Basic and organizing themes on the experiences of parents of AYAs with advanced cancer.

FIGURE 1

Basic and organizing themes on the experiences of parents of AYAs with advanced cancer.

TABLE 3

Organizing and Basic Themes With Representative Excerpts Regarding Parenting an AYA With Advanced Cancer

Organizing and Basic ThemesRepresentative Excerpt
What we do to love our child  
 (a) We parent during normal physical, social, and emotional adolescent events through the lens of cancer We've become a little more lenient with our son, he may not have to do as many chores as he used to, but he's still a child and has to be respectful. (Parent 4) 
 We have a lot of conversations about stamina, and how can she live her life, and what things are priorities . . . “If you're going out with your friends on Saturday night, I don’t think you’re going to go out for breakfast, and then go to the movies in the afternoon. And then go do this in evening because you’re going to be wiped, and you’re going to get a migraine.” (Parent 9) 
 A person at the school committed suicide during the holidays. And [my son] goes “well why do they do that?” And I go, “well, we don’t always know what is going on in everybody else’s life.” . . . [in addition to cancer] he has had to deal with what a normal teenager would have to deal with. (Parent 4) 
 My husband and I both were, “Don’t let her do that. She can’t do this, she can’t do that.” We were always constantly worried, “what if she falls, what if this happens, what if that happens?” I don’t know if it’s finally through time, or through everything we’ve been through that’s worse than that, that it’s just kind of made it easier to live. I think we just get so used to everything now, that we’re like, “It’s okay. If you fall down, you’ll be okay . . . Just go enjoy your life, have a good time.” (Parent 20) 
 (b) We navigate difficult conversations including disclosure of hard information and talking about death He’d always say, “Mom, you have to tell me. Don’t withhold any information from me. It’s even worse when you're trying to do that.” So he’d want us to be upfront with him. But of course, being parents, we always want to do our best, do our own research first and steady ourselves first. Get our mind very clear about it first. (Parent 15) 
 We tried really hard to keep as much of that away from her as we could. As she got older though, she would hear things . . . she’d question us, and we'd have to tell her. (Parent 20) 
 Just like every conversation, just like the conversation of whether to follow the peer pressure with doing drugs or having sex. It’s a frank, honest conversation. You have to take a quiet moment to be serious but not have it be scary to them at the same time. (Parent 4) 
 I just let him lead, when he wanted to talk he asked, “If God can kill me why doesn’t he just kill me,” and I said, “I don’t know, it’s a good question.” . . . He’s got those questions that we don’t have the answers for, so we just try to be honest . . . “I’m right there with you, I don’t understand, I’m sorry you’re going through this, I wish I could give you more answers, keep asking those questions.” (Parent 10) 
 A lot of times we just had to talk to the kids, because we were always out of town, and we’d be at a hotel together, so they’d see us if we’d get upset. They’d wonder why we were upset, and we’d have to tell [them], “There’s something else happening again.” We’d just try to stay as optimistic as we could. It could be that, it couldn’t be, we don’t know, but we’ll take care of it. (Parent 20) 
 I’ve also tried to hide it all from my son. So, it’s been really hard, emotionally and mentally, in watching my son go through this and then trying to talk to him about it. I don’t know how to talk to him. I’ll ask him, sometimes, he doesn't want to talk about it and I leave it. I leave it at that. (Parent 19) 
 [She said] when you think of me just buy cupcakes. You know it was very plain and like nothing too emotional or sappy or anything like that . . . She’s like “mom you know what to do” and I’m like “thanks a lot [laughs].” (Parent 7) 
 (c) We support our child’s growing autonomy and independent decision-making That two-year-old may be screaming bloody murder, but you can physically hold him. I can’t pick my hundred-pound child up. I can’t make him do stuff anymore. (Parent 5) 
 She did refuse treatment . . . And I remember sitting with her and telling her, “Do you know what that means if you don’t do anything?” And she said, “Yes, I do I know what it means. It would mean that . . . I may not make it or may not live,” and she said that she didn’t want to go through all this pain and treatment, and all that other stuff again. (Parent 12) 
 Well, he was so upset of not being able to go home. We went home to visit and on the way to visit, he said to me, “I’m so tired of this.” He goes, “I just want to stay home.” I said, “You can’t do that.” I said, “I’ll let you do pretty much anything you want, but you can’t quit your treatment.” And he was like, “Okay, but I’d like to.” Yeah, he was serious. He’s tired of it and he’s been really strong. (Parent 13) 
 (d) We advocate for our child with medical professionals I advocate for him so badly, and I’m right there riding with them . . . Not that I know anything but, I ask my questions. I know when something doesn’t make sense. I ask to clarify. (Parent 19) 
 You really need to be your kid’s best advocate . . . What, if there’s anything that you need to do to make them, to give them, to get them the treatment a better chance, to make sure you don’t get sick, then you just have to do it. (Parent 2) 
 (e) We stand by our child as a witness to the hardships they face in their cancer experience He has gotten in his mind that “it is unfair that I am going through this and what did I do to deserve this . . . Why did this happen to me” kind of thing. He would just say, when he was at his lowest, “I just want my life back. I just want to be 23 again. I want to come home from work and I want to eat something out of the freezer and I want to watch TV.” (Parent 3) 
 My daughter’s 19 so she got the call from her oncologist. We were walking through a mall, killing time . . . I wasn’t on the phone, but I could look at her reaction and tell . . . She got off the phone and she just told me, “Dad, they found three more spots.” I said, “Honey, I’m sorry.” We hugged. (Parent 16) 
 I don’t know how many times [my daughter] had a craving and we jump in the car, and run to the fill that craving. She’d have one bite and start throwing up, and not getting frustrated and upset, but being understanding and saying, “Okay. Now, what can we do?” . . . I don’t know how many times that we’ve walked into a restaurant that she really, really wanted to go, and got in the door. And I take one look at her face and we walk back out. (Parent 9) 
 I think because it’s the third diagnosis, I think she just at that point, you know, people came over and hugged her and gave her support. And her emotions the first day was just everything. So if someone said, “How are you feeling?” It’s like, “Well, right now I might be scared, and then in five minutes I might be not scared, and then I might be hopeful, but then not hopeful, and comforted, but not comforted.” So it was just every emotion, every five minutes. She goes, “You have to give me like a week to process this because, my emotions, I’m still in them all.” So that’s kind of how it was at first, the very initial reaction. (Parent 17) 
 Obviously my son went through the most and it’s hard to go through that and see him go through that . . . We feel really helpless even though there are treatments. (Parent 3) 
What challenges us  
 (a) The injustice of what we cannot normalize for our child Navigating the school stuff and the social stuff, and even dating and meeting anybody, she never leaves the house. I’m her best friend. The poor girl’s almost 18 and [I’m] her best friend. (Parent 9) 
 He’s not the happy-go-lucky kid that he used to be . . . he’s waiting for it to be done, for him to continue living life. (Parent 5) 
 Because you know, just imagine a teenager at home and not able to go to college or be with his friends and it pretty much robbed all his teenage years. (Parent 3) 
 The talk is always about cancer. And I want to get away from that. I don’t want him to go to school and people feel pity for him or feel bad. I want them to look at him and just say, “oh, that’s my friend. Let’s play basketball, let’s play football.” I mean he can’t right now, unfortunately, but . . . just be normal, like what would your normal conversation be. (Parent 19) 
 (b) Feeling that we have failed to meet parental norms of being able to protect our child I definitely have carried “the stereotypical mom takes care of everybody” right into the cancer world too and I feel that pressure, I definitely feel that pressure. Not wanting to share with family or friends bad news, I carry that weight because everyone wants to hear good news. (Parent 5) 
 As a mother, [my wife] is always right next to him at home. So she sees a lot more things with him. Being at home is very hard for her. I go to work so I have some distractions to keep my mind off of that. I am dealing with pressures at home with my son, with my wife, and work. I have to stay strong, otherwise my family would collapse. (Parent 3) 
 Like what did I do wrong? Where was I, where did I work, where did I breathe in? You know, maybe it’s that Tilex that I used. (Parent 18) 
 (c) When we are not able to do it all What would help me is if I actually had help, so that my focus could be on my children only and trying to give back the time that they missed out on. Because coming home to chaos and my house is a mess, I got laundry to do, and homework needs to be [done], dinner hasn’t been made, the refrigerator is empty. Those types of things, I mean give me so much anxiety. (Parent 19) 
 I’m always broke it is super tough on the family. I was working two jobs, and then right after radiation . . . I lost both jobs and I’ve been on state assistance and then just last month they canceled my state assistance. So now I’m like stressed. But, you know, one day at a time . . . We have a house over our heads, and we have power . . . and making sure I can get her to appointments and that’s pretty much it. (Parent 7) 
 (d) Our struggles to care for ourselves A lot of my time is spent with [my child], and doing for [my child], and caring for [my child], and so I guess sometimes when I do get a minute to take a second for myself it’s like, “Oh, well, what do I do now?” (Parent 12) 
 I work in a dispatch room and I told my buddy next to me, I was like, “Hey, I need five minutes.” And they know exactly what I mean. I walk out of the room, I let loose. Not screaming or hollering. I tear up and cry and five minutes, it’s over. It’s like a release valve. I don’t get excited a lot. (Parent 16) 
 The first time I was totally clueless, I didn’t talk to anyone. My work, my friends, my colleagues, everyone was like hey let us know if we can do anything and I said go away, don’t come near me. I didn’t go to work for a month and they were very understanding and they helped me. I didn’t know what to do and I didn’t even know how to take it. It was hard. The second time was much less compared to the first time, it was like this again, I can’t believe this is happening. And third time it was like ok and fourth time it didn’t bother me at all. And now it’s just like I’m numb. (Parent 3) 
 It’s very easy to have the days blend one into another, like yesterday I saw the sun. Today I looked out at the horizon, and that’s basically how I gauge where we are. It hasn’t been easy. (Parent 14) 
 (e) Worries about our child’s uncertain future The first time it was that initial blow of my kid’s really sick, but they can cure it and she’s gonna be good . . . Right now, my fear is just her surviving . . . Where first I might have been worried about her not being able to have children . . . now I'm worried about her just not even surviving the whole ordeal. So, your hopes and fears are constantly shifting. (Parent 11) 
 It took me about a year, the whole first year, everyday was just miserable. I was mourning while she was in treatment . . . it took me a long time to realize, well maybe she will be part of the four percent. (Parent 7) 
How we keep our heart focused on what matters most  
 (a) We appreciate our child’s strength and grace He is a remarkable individual and the resilience and courage and strength that he's shown, basically from [the] day of his diagnosis, has been amazing. He . . . was on the operating table, and he’s cracking jokes and making them all laugh and is kind of a light to the nurses. I think [they] all really enjoy him . . . and his friends who are struggling, he’s the one that’s kind of strong for them. And he has made my journey much easier just by the way he’s handled it. People are in awe of how he has walked through this challenge. (Parent 21) 
 I don’t know if parents give their kids credit enough that they can handle it. The question is, can you handle it? Because your kids, they can handle it . . . I want that parent to really see their child as capable and strong and just tenacious . . . I guess the parents have to learn how to be as strong as their kid. (Parent 17) 
 He said to me, “If I pass away, I don’t want you guys to stop believing in God. I don’t want you guys to divorce . . . I want you to be united and I want you to help other people if I do pass away. Please don’t be sad and don’t be scared. I will be fine.” (Parent 1) 
 (b) We cultivate a perspective of growth and gratitude It’s been a long road. Scary at times. Hopeful at times. It’s a big roller coaster. You have good days and bad days. A lot of seeing doctors and a lot of making decisions that you may or may not have been ready to make. (Parent 8) 
 Since my daughter was diagnosed, my priorities have changed so much. I mean, there were always more toward my family, but now it’s like nothing really matters anymore. Yes, I need to provide and be financially stable for my family, but things don't bother me the way they used to. (Parent 16) 
 Aside from all the hard, there's definitely been better benefits from it as far as just being able to experience that from other people. That kind of love and care. Then also what it brings to my family where it kind of opens their eyes more, their perspective of empathy, caring, and not judging people's situations. The list goes on. So, we are better people because of it. (Parent 17) 
Organizing and Basic ThemesRepresentative Excerpt
What we do to love our child  
 (a) We parent during normal physical, social, and emotional adolescent events through the lens of cancer We've become a little more lenient with our son, he may not have to do as many chores as he used to, but he's still a child and has to be respectful. (Parent 4) 
 We have a lot of conversations about stamina, and how can she live her life, and what things are priorities . . . “If you're going out with your friends on Saturday night, I don’t think you’re going to go out for breakfast, and then go to the movies in the afternoon. And then go do this in evening because you’re going to be wiped, and you’re going to get a migraine.” (Parent 9) 
 A person at the school committed suicide during the holidays. And [my son] goes “well why do they do that?” And I go, “well, we don’t always know what is going on in everybody else’s life.” . . . [in addition to cancer] he has had to deal with what a normal teenager would have to deal with. (Parent 4) 
 My husband and I both were, “Don’t let her do that. She can’t do this, she can’t do that.” We were always constantly worried, “what if she falls, what if this happens, what if that happens?” I don’t know if it’s finally through time, or through everything we’ve been through that’s worse than that, that it’s just kind of made it easier to live. I think we just get so used to everything now, that we’re like, “It’s okay. If you fall down, you’ll be okay . . . Just go enjoy your life, have a good time.” (Parent 20) 
 (b) We navigate difficult conversations including disclosure of hard information and talking about death He’d always say, “Mom, you have to tell me. Don’t withhold any information from me. It’s even worse when you're trying to do that.” So he’d want us to be upfront with him. But of course, being parents, we always want to do our best, do our own research first and steady ourselves first. Get our mind very clear about it first. (Parent 15) 
 We tried really hard to keep as much of that away from her as we could. As she got older though, she would hear things . . . she’d question us, and we'd have to tell her. (Parent 20) 
 Just like every conversation, just like the conversation of whether to follow the peer pressure with doing drugs or having sex. It’s a frank, honest conversation. You have to take a quiet moment to be serious but not have it be scary to them at the same time. (Parent 4) 
 I just let him lead, when he wanted to talk he asked, “If God can kill me why doesn’t he just kill me,” and I said, “I don’t know, it’s a good question.” . . . He’s got those questions that we don’t have the answers for, so we just try to be honest . . . “I’m right there with you, I don’t understand, I’m sorry you’re going through this, I wish I could give you more answers, keep asking those questions.” (Parent 10) 
 A lot of times we just had to talk to the kids, because we were always out of town, and we’d be at a hotel together, so they’d see us if we’d get upset. They’d wonder why we were upset, and we’d have to tell [them], “There’s something else happening again.” We’d just try to stay as optimistic as we could. It could be that, it couldn’t be, we don’t know, but we’ll take care of it. (Parent 20) 
 I’ve also tried to hide it all from my son. So, it’s been really hard, emotionally and mentally, in watching my son go through this and then trying to talk to him about it. I don’t know how to talk to him. I’ll ask him, sometimes, he doesn't want to talk about it and I leave it. I leave it at that. (Parent 19) 
 [She said] when you think of me just buy cupcakes. You know it was very plain and like nothing too emotional or sappy or anything like that . . . She’s like “mom you know what to do” and I’m like “thanks a lot [laughs].” (Parent 7) 
 (c) We support our child’s growing autonomy and independent decision-making That two-year-old may be screaming bloody murder, but you can physically hold him. I can’t pick my hundred-pound child up. I can’t make him do stuff anymore. (Parent 5) 
 She did refuse treatment . . . And I remember sitting with her and telling her, “Do you know what that means if you don’t do anything?” And she said, “Yes, I do I know what it means. It would mean that . . . I may not make it or may not live,” and she said that she didn’t want to go through all this pain and treatment, and all that other stuff again. (Parent 12) 
 Well, he was so upset of not being able to go home. We went home to visit and on the way to visit, he said to me, “I’m so tired of this.” He goes, “I just want to stay home.” I said, “You can’t do that.” I said, “I’ll let you do pretty much anything you want, but you can’t quit your treatment.” And he was like, “Okay, but I’d like to.” Yeah, he was serious. He’s tired of it and he’s been really strong. (Parent 13) 
 (d) We advocate for our child with medical professionals I advocate for him so badly, and I’m right there riding with them . . . Not that I know anything but, I ask my questions. I know when something doesn’t make sense. I ask to clarify. (Parent 19) 
 You really need to be your kid’s best advocate . . . What, if there’s anything that you need to do to make them, to give them, to get them the treatment a better chance, to make sure you don’t get sick, then you just have to do it. (Parent 2) 
 (e) We stand by our child as a witness to the hardships they face in their cancer experience He has gotten in his mind that “it is unfair that I am going through this and what did I do to deserve this . . . Why did this happen to me” kind of thing. He would just say, when he was at his lowest, “I just want my life back. I just want to be 23 again. I want to come home from work and I want to eat something out of the freezer and I want to watch TV.” (Parent 3) 
 My daughter’s 19 so she got the call from her oncologist. We were walking through a mall, killing time . . . I wasn’t on the phone, but I could look at her reaction and tell . . . She got off the phone and she just told me, “Dad, they found three more spots.” I said, “Honey, I’m sorry.” We hugged. (Parent 16) 
 I don’t know how many times [my daughter] had a craving and we jump in the car, and run to the fill that craving. She’d have one bite and start throwing up, and not getting frustrated and upset, but being understanding and saying, “Okay. Now, what can we do?” . . . I don’t know how many times that we’ve walked into a restaurant that she really, really wanted to go, and got in the door. And I take one look at her face and we walk back out. (Parent 9) 
 I think because it’s the third diagnosis, I think she just at that point, you know, people came over and hugged her and gave her support. And her emotions the first day was just everything. So if someone said, “How are you feeling?” It’s like, “Well, right now I might be scared, and then in five minutes I might be not scared, and then I might be hopeful, but then not hopeful, and comforted, but not comforted.” So it was just every emotion, every five minutes. She goes, “You have to give me like a week to process this because, my emotions, I’m still in them all.” So that’s kind of how it was at first, the very initial reaction. (Parent 17) 
 Obviously my son went through the most and it’s hard to go through that and see him go through that . . . We feel really helpless even though there are treatments. (Parent 3) 
What challenges us  
 (a) The injustice of what we cannot normalize for our child Navigating the school stuff and the social stuff, and even dating and meeting anybody, she never leaves the house. I’m her best friend. The poor girl’s almost 18 and [I’m] her best friend. (Parent 9) 
 He’s not the happy-go-lucky kid that he used to be . . . he’s waiting for it to be done, for him to continue living life. (Parent 5) 
 Because you know, just imagine a teenager at home and not able to go to college or be with his friends and it pretty much robbed all his teenage years. (Parent 3) 
 The talk is always about cancer. And I want to get away from that. I don’t want him to go to school and people feel pity for him or feel bad. I want them to look at him and just say, “oh, that’s my friend. Let’s play basketball, let’s play football.” I mean he can’t right now, unfortunately, but . . . just be normal, like what would your normal conversation be. (Parent 19) 
 (b) Feeling that we have failed to meet parental norms of being able to protect our child I definitely have carried “the stereotypical mom takes care of everybody” right into the cancer world too and I feel that pressure, I definitely feel that pressure. Not wanting to share with family or friends bad news, I carry that weight because everyone wants to hear good news. (Parent 5) 
 As a mother, [my wife] is always right next to him at home. So she sees a lot more things with him. Being at home is very hard for her. I go to work so I have some distractions to keep my mind off of that. I am dealing with pressures at home with my son, with my wife, and work. I have to stay strong, otherwise my family would collapse. (Parent 3) 
 Like what did I do wrong? Where was I, where did I work, where did I breathe in? You know, maybe it’s that Tilex that I used. (Parent 18) 
 (c) When we are not able to do it all What would help me is if I actually had help, so that my focus could be on my children only and trying to give back the time that they missed out on. Because coming home to chaos and my house is a mess, I got laundry to do, and homework needs to be [done], dinner hasn’t been made, the refrigerator is empty. Those types of things, I mean give me so much anxiety. (Parent 19) 
 I’m always broke it is super tough on the family. I was working two jobs, and then right after radiation . . . I lost both jobs and I’ve been on state assistance and then just last month they canceled my state assistance. So now I’m like stressed. But, you know, one day at a time . . . We have a house over our heads, and we have power . . . and making sure I can get her to appointments and that’s pretty much it. (Parent 7) 
 (d) Our struggles to care for ourselves A lot of my time is spent with [my child], and doing for [my child], and caring for [my child], and so I guess sometimes when I do get a minute to take a second for myself it’s like, “Oh, well, what do I do now?” (Parent 12) 
 I work in a dispatch room and I told my buddy next to me, I was like, “Hey, I need five minutes.” And they know exactly what I mean. I walk out of the room, I let loose. Not screaming or hollering. I tear up and cry and five minutes, it’s over. It’s like a release valve. I don’t get excited a lot. (Parent 16) 
 The first time I was totally clueless, I didn’t talk to anyone. My work, my friends, my colleagues, everyone was like hey let us know if we can do anything and I said go away, don’t come near me. I didn’t go to work for a month and they were very understanding and they helped me. I didn’t know what to do and I didn’t even know how to take it. It was hard. The second time was much less compared to the first time, it was like this again, I can’t believe this is happening. And third time it was like ok and fourth time it didn’t bother me at all. And now it’s just like I’m numb. (Parent 3) 
 It’s very easy to have the days blend one into another, like yesterday I saw the sun. Today I looked out at the horizon, and that’s basically how I gauge where we are. It hasn’t been easy. (Parent 14) 
 (e) Worries about our child’s uncertain future The first time it was that initial blow of my kid’s really sick, but they can cure it and she’s gonna be good . . . Right now, my fear is just her surviving . . . Where first I might have been worried about her not being able to have children . . . now I'm worried about her just not even surviving the whole ordeal. So, your hopes and fears are constantly shifting. (Parent 11) 
 It took me about a year, the whole first year, everyday was just miserable. I was mourning while she was in treatment . . . it took me a long time to realize, well maybe she will be part of the four percent. (Parent 7) 
How we keep our heart focused on what matters most  
 (a) We appreciate our child’s strength and grace He is a remarkable individual and the resilience and courage and strength that he's shown, basically from [the] day of his diagnosis, has been amazing. He . . . was on the operating table, and he’s cracking jokes and making them all laugh and is kind of a light to the nurses. I think [they] all really enjoy him . . . and his friends who are struggling, he’s the one that’s kind of strong for them. And he has made my journey much easier just by the way he’s handled it. People are in awe of how he has walked through this challenge. (Parent 21) 
 I don’t know if parents give their kids credit enough that they can handle it. The question is, can you handle it? Because your kids, they can handle it . . . I want that parent to really see their child as capable and strong and just tenacious . . . I guess the parents have to learn how to be as strong as their kid. (Parent 17) 
 He said to me, “If I pass away, I don’t want you guys to stop believing in God. I don’t want you guys to divorce . . . I want you to be united and I want you to help other people if I do pass away. Please don’t be sad and don’t be scared. I will be fine.” (Parent 1) 
 (b) We cultivate a perspective of growth and gratitude It’s been a long road. Scary at times. Hopeful at times. It’s a big roller coaster. You have good days and bad days. A lot of seeing doctors and a lot of making decisions that you may or may not have been ready to make. (Parent 8) 
 Since my daughter was diagnosed, my priorities have changed so much. I mean, there were always more toward my family, but now it’s like nothing really matters anymore. Yes, I need to provide and be financially stable for my family, but things don't bother me the way they used to. (Parent 16) 
 Aside from all the hard, there's definitely been better benefits from it as far as just being able to experience that from other people. That kind of love and care. Then also what it brings to my family where it kind of opens their eyes more, their perspective of empathy, caring, and not judging people's situations. The list goes on. So, we are better people because of it. (Parent 17) 

Parents shared a variety of caregiving acts that attended to the everyday needs of their AYA with advanced cancer.

We Parent During Normal Physical, Social, and Emotional Adolescent Events Through the Lens of Cancer

Many parents described the difficulties of integrating normal AYA parenting with the cancer experience. Parents described making decisions about the chores their AYA would have and how to respond to teenage outbursts while still being sensitive to the AYA’s emotional experience of having cancer. “You're trying to teach any normal teenager self-control, it's one thing, now try teaching a teenager who has every right to be mad at the world self-control, that's even harder” (Parent 4).

Parents also talked about coaching their child through some of the hard experiences in teenage life, such as challenges with peer social relationships and even teen suicide. There was often a balance that parents tried to maintain of allowing for normal AYA experiences while simultaneously recognizing how life had changed from cancer.

We Navigate Difficult Conversations Including Disclosure of Hard Information and Talking About Death

Parents also discussed their experiences of communicating with their child about difficult topics, such as cancer relapse and death. Some parents described being completely transparent with their AYA, whereas others wanted to protect their child from bad news. The majority of parents tried to share information in a way that they thought was best for their child. Parents additionally described the process of how information sharing changed as their child transitioned to young adulthood and there were fewer ways they could shelter them from information.

[The physician] was talking about the side effects of CAR- T and I think that was the first time he really listened to what the doctors were saying because when we got home he said “what does it mean when they say they’ve had fatal incident(s), does that mean a kid died?” and I said “yeah honey” and then he said . . . “why are we doing this, we can’t do this.” And I just was like, “you don’t really have a choice . . . you’re going to die if we don’t continue to do this” and he falls apart and I hold him. (Parent 6)

We Support Our Child’s Growing Autonomy and Independent Decision-Making

Parents found their own balance of enabling their AYA to have decision-making autonomy, particularly if therapies had negative side effects or unknown benefit. “I have always let every decision be up to him . . . We don’t know if it is going to help or not, but he is the one that has to go through this treatment . . . I can support him in whatever decision he makes” (Parent 4).

We Advocate for Our Child With Medical Professionals

Parents also talked about the essential task of advocating for their child to give them the best care possible. “I need to ask the right question to make sure that she's getting the right treatment . . . the best doctors and the best care, and to make sure that I fight [for] the best for her as a mom and parent” (Parent 12).

We Stand by Our Child as a Witness to the Hardships They Face in Their Cancer Experience

Through it all, parents described the many ways in which they “held their child” through their cancer experience. Parents described feeling helpless as their AYA struggled with disappointments and fears, and their inability as parents to make it better. Many responded with listening support and deep empathy for their child’s experience.

When she cried, I held her and said “I love you,” and let her cry. When she got angry and she was cussing and yelling, I held her and let her scream so that there was that unconditional acceptance that, “Your feelings are not bad and I am big enough to absorb them.” (Parent 9)

Parents shared many challenges that centered on their internal worries and barriers to being the best parent possible for their AYA (Table 3).

The Injustice of What We Cannot Normalize for Our Child

The majority of parents described the injustice they felt because their child was missing out on normal AYA activities such as not going to college or having peer relationships. “Her struggles have been more surrounding areas like she's missing out. She's 21. She's a senior. She's going to have to put her life on hold again. She put it on hold once and now after the relapse it's been even rougher” (Parent 11).

Parents also described adjusting to the ways their child’s personality changed because of cancer and the injustice of having their carefree and “happy-go-lucky” nature altered.

Feeling That We Have Failed to Meet Parental “Norms” of Being Able to Protect Our Child

Many parents also described their own failed expectations of being the “mom [who] takes care of everybody” or the father who feels that he has “to stay strong, otherwise [the] family will collapse.” Parents described feeling like a bad parent if they felt overwhelmed or out of control. “I think that there's a lot of parents that feel guilty if they get overwhelmed or if they even feel resentful of their child sometimes because it takes all of their energy; emotionally, physically, financially” (Parent 9).

When We Are Not Able to Do It All

Many parents described the impossible task of trying to maintain life at home while simultaneously meeting the needs of their other children and their AYA with cancer. “You have to be in a thousand places at the same time but there's only one you. And there's not enough time in the day to do it all. That's what makes it hard. And then on top of that you have a child battling cancer” (Parent 19).

Our Struggles to Care for Ourselves

Parents described their struggles with self-care and emotional processing during their child’s cancer treatment. “When I have those breakdowns, I have to do it for myself. I run away from everybody . . . I isolate myself and I cry it all out. And then I feel better afterwards” (Parent 19).

Parents used time away, religion and spirituality, and exercise to sustain themselves. Parents also described talking to others and writing as ways to release emotions.

Worries About Our Child’s Uncertain Future

Parents’ primary fears were often related to the cancer not responding to treatment and the possibility of their child’s death. Some parents held on to hope for cure and focused on their child surviving. Other parents described feeling numb to these fears and accepting whatever the future held because they had been through their child’s relapse so many times. “You don't know what the next symptom or sign of it is going to be . . . You just know that he's going to go through a battle and it's not something you can prepare for. My fear is the unknown” (Parent 4).

Through the difficult experience of parenting an AYA with advanced cancer, parents found many ways to cope (Table 3).

We Appreciate Our Child’s Strength and Grace

Parents derived strength from seeing their “child as capable and strong and just tenacious.” Parents also discussed their child’s faith and that this gave them additional courage as parents. “He keeps telling me [to] be positive and don’t get mad at God . . . these things happen to everybody and he said to me ‘What makes me different from other people? It happens to other kids so why would it not happen to me?’” (Parent 1).

We Cultivate a Perspective of Growth and Gratitude

Parents described taking things day-by-day and focusing on their primary role as parents. This role, regardless of their child’s eventual outcome, was to show their child love. “All you have to do is to love your child. That's it . . . Because everything else will fall into place” (Parent 14).

Parents described needing to make the best of things, push forward, fight, and remain hopeful. Although many experienced sorrow, parents also described gaining grace and gratitude. “I had a best day of my life recently . . . after 6-months we went home and we ate together and that was it . . . So [I] find little things” (Parent 3).

Many parents learned to appreciate the everyday things that made their family whole and that showed the love between them as a parent and their child.

Parents of AYAs with advanced cancer face innumerable stresses throughout their child’s cancer experience. This study provides an in-depth look at parents’ perspectives as caregivers during this challenging time.

This study adds to our understanding of the incredible acts of parenting important to the care of AYAs with advanced cancer.20  These acts include the essential caregiving, advocacy, and social-emotional support that these young adults need.2123  Many parents in our study also navigated difficult conversations with their child about illness and death. Parents supported their child by being present, listening, and acknowledging what was beyond their control.24  These parenting acts are likely essential to sustaining the trusting relationships between AYAs and their parents necessary for psychosocial well-being during advanced cancer treatment.2527 

This study also provides further insight regarding the challenges that parents face during their AYA’s treatment. Other studies suggest that parents experience daily worries about changes in their family life, lost hopes, and struggles with uncertainty.28  In these challenging circumstances, parents prioritize preserving their child’s “normal life” as much as possible.29,30  Although parents in this study shared similar perspectives, we additionally found that parents experience this lack of normalcy in the ways they are unable to “stay strong” or “make everything better” as parents.

These findings of simultaneous strength and struggle fit cohesively with previous research exploring posttraumatic growth among parents of children with cancer and other forms of serious illness.31  It is through the many ways parents redefine and reconstruct their parenting roles that contributes to their own personal narrative development, strength, and wisdom.3133  Parents in our study did this by focusing on the present moment and being grateful for life’s simple everyday activities during their child’s cancer experience. Additionally, we found that parents appreciated the grace and strength of their child. Through it all, parents described letting their AYA grow and loving their child wholeheartedly, suggesting that despite devasting illness, there are ways to help parents center on, sustain, and build positive coping strategies.

This study has important implications for how we think about parent support programs not only in advanced cancer but also in other forms of serious illness. Cultivating a perspective of positive coping, including posttraumatic growth, appears to be an important way of supporting the parent and the child. Multiple existing positive psychology interventions developed in pediatric oncology may have broader application within other seriously ill pediatric populations and be important areas for program development in centers supporting these patients and families.3439  Screening tools may be helpful in assessing parental coping to determine which parents may benefit from such interventions40,41  More research is needed to understand parental experiences throughout their child’s illness journey in other serious illness groups so that we can support parent well-being.

There are several important limitations to this study. Although 14% of the AYAs whose parents were interviewed for this study died within the subsequent 12 months, we did not address how parents’ perspectives change as their child is closer to end-of-life. Although this study was conducted in a geographic region where we expected diversity, the majority of our participants were mothers, were non-Hispanic or Latino, and described themselves as religious and/or spiritual, limiting the generalizability of our findings. Despite this, parents did represent a variety of racial backgrounds, different socioeconomic statuses, and levels of education. Although the study included AYAs ages 14 to 25, the majority were 15 to 19 years old and therefore represented a smaller subset of the AYA age range. Furthermore, it is unknown how comfortable parents felt sharing their experiences about their child’s ongoing advanced cancer in an interview format, although data suggest that parents may be less likely to respond to survey questions about difficult topics.42  Although care was taken to be as comprehensive as possible, some parents’ perspectives may not have been captured.

Parents of AYAs with advanced cancer integrate the complexities of cancer treatment and setbacks into the experiences of raising a child entering young adulthood. Despite the difficulties, parents find strength and resilience through focusing on what matters most and loving their child. This research has important implications for how we build programs that support and sustain parents’ well-being during their child’s serious illness.

We thank the parents who shared their perspectives on their AYA’s cancer journey with us.

Dr Bogetz conceptualized the manuscript, analyzed the data, drafted the original manuscript, and revised the manuscript; Drs Trowbridge, Kingsley, and Taylor analyzed the data and edited and revised the manuscript; Drs Rosenberg and Barton conceptualized and designed the study, analyzed the data, and edited and revised the manuscript; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

FUNDING: Supported in part by the Seattle Children’s Guild Association Adolescent and Young Adult Cancer Fund. Funding for Dr. Jori Bogetz was support by the Seattle Children’s Research Institute, Center for Clinical and Translational Research, Clinical Research Scholars Program.

     
  • AYA

    adolescent and young adult

  •  
  • IQR

    interquartile range

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Competing Interests

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.