Children with complex chronic conditions (CCCs) and their parents benefit from supportive serious illness care when their conditions are severe and impact their quality of life and stress. This includes not only expert medical care but also effective relationships with the clinical team. Existing data suggest that there are opportunities for improvement. This study’s aim was to explore important aspects of the relationships and resources that facilitate supportive serious illness care among children with CCCs and their parents.
We conducted semistructured interviews with adolescents and young adults (AYAs) with CCCs (aged 13–35 years), and parents of children with CCCs across 2 academic pediatric centers in the United States from December 2018 to April 2019. Transcripts were iteratively coded and analyzed by a team that included a sociologist, pediatric intensivist, and palliative care researcher by using inductive and deductive thematic analysis.
Seven AYAs with CCCs and 9 parents participated (16 total; 1 AYA–parent dyad). Two key categories were identified around relationships with the clinical team: trust and fostering collaboration. Three key categories related to resources are information needs, making sense of life with illness, and supportive community. Many of the key categories and themes identified by participants had both tangible and intangible components and revealed the distinct yet interconnected nature of these aspects of care.
Awareness and cultivation of relationship and resource support through innovative interventions and attention to those with increased needs in these areas may improve the serious illness care provided to children with CCCs and their parents.
There are >500,000 children with complex chronic conditions (CCCs) living in the United States.1 Children with CCCs are defined as children or young adults ≥1 month of age with a medical condition reasonably expected to last at least 12 months (unless death intervenes) and to involve either several organ systems or 1 system severely enough to require specialty pediatric care and hospitalization in a tertiary care hospital.1 Many children and adolescents and young adults (AYAs) with CCCs live with ongoing complex medical needs that require frequent interactions within the health care system.2–4 When severe illness occurs that impacts quality of life and family stress, children and AYAs with CCCs and their parents deserve supportive serious illness care.5,6
Meeting the needs of children and AYAs with CCCs and their families during serious illness requires not only expert medical care but also effective communication and emotional connection with the clinical team.7–9 This facilitates illness understanding, effective partnership, psychosocial wellness, and other resources to help these patients and families to live as well as possible.10–13 Yet, existing data suggest that there are opportunities to improve patient and family experience.14–16 These opportunities center on both the relational aspects of care that involve interprofessional clinicians and the internal and external resources that sustain children and parents across their illness trajectory. Specifically, patients with CCCs and their parents have reported not feeling heard by clinicians, having different perspectives on quality of life than their medical caregivers, and experiencing conflict during medical decision making.9,17,18 Additionally, patients and families have reported limited resources to bolster their psychosocial and emotional coping and resilience, navigation of the health care system, and social supports.16,19,20
To better delineate the opportunities to meet these needs, the authors of this study aimed to explore aspects important to the relationships and resources that facilitate supportive serious illness care among AYAs and parents of children with CCCs.
Methods
This study was a secondary supplementary analysis21,22 of data from the Pediatric Serious Illness Communication Program study, which developed a structured approach to advance care planning discussions for children/AYAs with serious illness and their parents.23 As part of the conversation guide development, individual semistructured interviews were conducted with AYAs with CCCs and parents of children of all ages with CCCs to explore perceptions about current serious illness care, supports, and communication. We followed the consolidated criteria for reporting qualitative research guidelines to ensure methodological rigor.24
Sample
This study was conducted at 2 academic tertiary pediatric centers in the northeast United States that care for CCCs into early adulthood. We employed purposive sampling based on illness type, duration of illness, and sex to maximize representation. Eligible AYAs were those with a CCC,1 aged 13 to 35, English-speaking, and considered cognitively able to participate by their attending/primary physician. Eligible parents included English-speakers of any aged child living with a CCC. Potential AYA and parent participants were (1) self-referred after viewing study flyers in outpatient or inpatient settings throughout the pediatrics centers, (2) self-referred from posting on the Courageous Parents Network Web site (www.courageousparents.org),25 which is a nonprofit organization and educational platform for families and providers that focuses on pediatric serious illness, or (3) they were referred by the palliative care service. Participants not self-referred were approached in person after attending or primary physician approval. AYA–parent dyads were permitted but not required. Adult participants, including AYAs >18 years of age and parents, indicated consent by participating in interviews. For minors, parental permission and child assent were obtained. All participants received a one-time retail gift card after interview completion. This study was approved by the institutional review board.
Interviews
In-person or phone semistructured interviews with AYAs with CCCs and parents were conducted between December 2018 and April 2019 by a trained researcher unknown to the participants (Dr Revette, Ms Partin). Interviews were audio-recorded and professionally transcribed. Separate versions of the semistructured interview guides were developed for AYAs and parents reflecting their unique intrapersonal, interpersonal, and social contexts. To inform interview guide development, we used a literature review and interprofessional experts from palliative care and critical care as well as parents of children with CCCs who were advisors on the study. The AYA and parent interview guides are available in Supplemental Table 3.
Analysis
An interdisciplinary team consisting of a sociologist (Dr Revette), a pediatric critical care physician/clinical researcher (Dr DeCourcey), a trained research assistant (Ms Partin), and a palliative care physician/clinical researcher (Dr Bogetz) conducted thematic analysis on transcripts, incorporating both inductive and deductive dynamics.26 Through an iterative process, comprehensive coding structures were developed incorporating emergent codes and prefigured codes, which were based on domains from the interview guide and existing studies regarding serious illness from pediatric oncology.27–30 Coding structures were then systematically applied and coded independently by 2 coders (Dr. DeCourcey and Ms. Partin). Discrepancies were identified and discussed weekly with the third coder adjudicating (Dr Revette), achieving high interrater reliability (κ >.85). Data analysis, assisted by NVivo12 (QSR International),31 prioritized the identification of domains, key categories, and predominant themes. Themes, with their corresponding quotes, were grouped through an iterative process by using thematic networks analysis to identify associations.32
Results
Seven AYAs and 9 parents of children with CCCs participated (16 total; 1 AYA-parent dyad). An additional 3 AYAs and 1 parent were approached but declined. Two parents of children with CCCs self-referred from the Courageous Parents Network. AYA participants were a mean age of 24 years (median 25, range 17 to 32) and children of parent participants were a mean age of 18 years (median 20, range 6 to 26). The majority of AYA and parent participants were female (11, 69%) and white (14, 88%). Notably, 75% (12) of AYA and parent participants had palliative care involvement and 57% (4) of the AYAs and 33% (3) of the parent’s children died within 1 year of study participation, indicating that this was a seriously ill study population with CCCs. Table 1 reveals additional demographic information.
Demographic Information
| Participants | AYAs, n = 7 | Parents, n = 9 |
|---|---|---|
| Participant characteristics | ||
| Parent age, mean (median, range) | 52 (52, 28–66) | |
| Child age, y, mean (median, range) | 24 (25, 17–32) | 18 (20, 6–26) |
| Male sex, n (%) | 2 (29) | 3 (33) |
| Duration of illness, y, mean (median, range) | 22 (20, 12–32) | 16 (18, 4–26) |
| Race, n (%) | ||
| White | 6 (86) | 8 (89) |
| African American | 1 (11) | |
| Asian American | 1 (14) | |
| Religion, n (%) | ||
| Christian | 2 (29) | 6 (67) |
| Jewish | 1 (11) | |
| No religious preference | 4 (57) | 2 (22) |
| Disease category, n (%) | ||
| Congenital and chromosomal | 1 (14) | 3 (33) |
| CNS static encephalopathy | 2 (22) | |
| CNS progressive | 1 (11) | |
| Cardiac | 1 (14) | 1 (11) |
| Oncologic | 1 (14) | 1 (11) |
| Pulmonary | 3 (43) | 1 (11) |
| Renal | 1 (14) | |
| Palliative care involvement, n (%) | ||
| Yes | 5 (71) | 7 (78) |
| Advanced directive, n (%) | ||
| Yes | 3 (43) | 5 (56) |
| Insurance type, n (%) | ||
| Public | 5 (71) | 3 (33) |
| Combined | 1 (14) | 5 (56) |
| AYA or parent’s child died within 1 y of interview, n (%) | ||
| Yes | 4 (57) | 3 (33) |
| Participants | AYAs, n = 7 | Parents, n = 9 |
|---|---|---|
| Participant characteristics | ||
| Parent age, mean (median, range) | 52 (52, 28–66) | |
| Child age, y, mean (median, range) | 24 (25, 17–32) | 18 (20, 6–26) |
| Male sex, n (%) | 2 (29) | 3 (33) |
| Duration of illness, y, mean (median, range) | 22 (20, 12–32) | 16 (18, 4–26) |
| Race, n (%) | ||
| White | 6 (86) | 8 (89) |
| African American | 1 (11) | |
| Asian American | 1 (14) | |
| Religion, n (%) | ||
| Christian | 2 (29) | 6 (67) |
| Jewish | 1 (11) | |
| No religious preference | 4 (57) | 2 (22) |
| Disease category, n (%) | ||
| Congenital and chromosomal | 1 (14) | 3 (33) |
| CNS static encephalopathy | 2 (22) | |
| CNS progressive | 1 (11) | |
| Cardiac | 1 (14) | 1 (11) |
| Oncologic | 1 (14) | 1 (11) |
| Pulmonary | 3 (43) | 1 (11) |
| Renal | 1 (14) | |
| Palliative care involvement, n (%) | ||
| Yes | 5 (71) | 7 (78) |
| Advanced directive, n (%) | ||
| Yes | 3 (43) | 5 (56) |
| Insurance type, n (%) | ||
| Public | 5 (71) | 3 (33) |
| Combined | 1 (14) | 5 (56) |
| AYA or parent’s child died within 1 y of interview, n (%) | ||
| Yes | 4 (57) | 3 (33) |
CNS, central nervous system; —, not applicable.
Two key categories were identified around relationships with the clinical team: trust and fostering collaboration. Three key categories related to internal and external resources that benefited the child and family: information needs, making sense of life with illness, and supportive community (Fig 1). Each of these categories, along with their corresponding themes, are described in detail below and are also revealed in Table 2 with additional representative quotes.
Mutually reinforcing connections among relationship and resource domains, categories, and themes.
Mutually reinforcing connections among relationship and resource domains, categories, and themes.
Exemplar Quotes From AYAs and Their Parents About the Relationships and Resources That Bolster Serious Illness Communication and Connection
| Domains, Key Categories, and Subthemes | AYAs | Parents |
|---|---|---|
| Relationships | ||
| Trust | ||
| Recognizing clinician expertise | Communication is a big factor, and it’s something that my family and I have recognized over the years that does not happen very well . . . because you’re putting your health and you’re wanting to trust these people that say my name’s so-and-so, I’m with this team and we’re going to get you better. [AYA 7] | One of his doctors . . . he referred me to another neurologist, and I said, why do you want me to see this guy . . . and he said because he’s very comfortable with end-of-life discussions, and I think he’s going to be a good asset for you. And I was so grateful for that advice, insight, and compassion . . . and [steering] me toward somebody who would feel comfortable talking with our family. [Parent 8] |
| This one doctor said . . . “Put her on the vent, and then you can have the conversation” . . . And then as time progressed . . . make educated decisions instead of just an emotional decision. [Parent 3] | ||
| Following child/parent expertise | I felt like I was dismissed. I felt like I said something and he was just like, “yeah, okay,” and for all of the pain and all of the suffering and all of the fortitude—all of those things to get to this point—I don’t think that anyone deserves to be talked to like that who’s dealt with such larger than life things that are just really, really hard to deal with. [AYA 7] | Parents know their kids the best . . . I think just showing that you care and then whoever they connect with would be the go-to person to talk to. [Parent 3] |
| There’s an issue for doctors of how do you know if you can trust a parent and how do you know when to listen to a parent and not? I mean, for all he knew I could have been [a] parent who was trying to do something really out of the realm of what was logical. So I get it, that he didn’t know me, so why should he necessarily blindly trust what I was saying . . . I get that it’s a two-way street, but nine times out of ten I think – you can respect what the parent is saying. [Parent 8] | ||
| Fostering collaboration | ||
| Making the extra effort | I feel like [my transplant coordinator] has been there literally through every single step of my life . . . Some people you can tell that they put their whole heart into their job, and they care about their patients. [AYA 5] | There’s a doctor there who . . . I’ve known him for 20-something years, and he used to call me at home after we were discharged to see how we were doing . . . and say, you know, it was a tough week, are you guys okay? . . . And I just always felt like that really made an impression on me . . . it’s like the doctor that goes that extra step. [Parent 8] |
| It’s just some of them you just know that they’re gonna fight for you and others not so much. [AYA 4] | ||
| Knowing what’s important to the child/parent | I want my health but I also want a life. I want a life to be able to live and flourish with and so on, so I think that my doctors, they get that. [AYA 7] | I feel like her team does listen to her. They try to get her home as much as they can because they know her [priorities]. [Parent 2] |
| I feel like you should know and be invested in a patient rather than just a name on a piece of paper. [AYA 4] | [My son’s clinicians] are almost like family . . . they know what I want . . . and they know when you’re here it’s difficult. [Parent 1] | |
| Feeling heard and understood | [She’s] been my nurse for a very, very long time, so I’m definitely—I feel very comfortable with her in talking about everything. [AYA 5] | I think it’s a two-way street . . . I work much better with a specialist who’s collaborative and who’s willing to listen. [Parent 8] |
| I would no sooner have wanted to discuss the future of my child’s care with this guy because I didn’t trust him in the present . . . He was doing nothing to make me feel heard and to make me feel comfortable. [Parent 8] | ||
| Resources | ||
| Information needs | ||
| Gaining medical knowledge | I’m just listening to you because you’re the doctor and we, as in patients, don’t know anything . . . but I never realized that you can adapt and tell them that, oh, you want this and you don’t want that. [AYA 6] | I didn’t know anything when I first started . . . And now I know him . . . I’m [not] a medical person, but I know everything it takes to keep him going. [Parent 1] |
| Navigating the hospital system | It would be kind of ridiculous to have just a direct like batman signal out to your [subspecialists] and just be like you know you always have to be available to me. [AYA 5] | There’s no routine when you first get here. You don’t know where anything is. You don’t know what you’re doing. What am I going to do with my laundry? . . . Food. [But now] it’s like I’ve lived here for a year. [Parent 1] |
| If I can’t get my [child’s] doctor . . . they at least send a token somebody, but I will E-mail the doctors directly myself and say, we’re here, can you come down? [Parent 8] | ||
| Making sense of life with illness | ||
| Leaning on spirituality | I have a back-and-forth relationship with how I feel about god . . . I just like the community of people, and that’s my church—[it] is the people. [AYA 5] | I think spiritually, when I know that I know, then I’m adamant . . . I’m talking about my child’s life. So I believe it’s definitely a divine intervention. [Parent 3] |
| I think everybody gets closer to God when your kid is not well. [Parent 4] | ||
| Finding personal meaning | We were the initial study group for if [this drug] was going to be used . . . and it turns out that it’s one of the most widely used drugs now . . . and so I feel very proud of that . . . through our struggle, something really good [came] from it. [AYA 7] | It’s beautiful . . . When you have a special needs kid or a kid that’s not healthy or that has challenges, you love them strictly for who they are. [Parent 4] |
| Supportive community | ||
| Engaging with family/friends | For me, my family unit is extremely important. They’re my rock, and they’re my support network. [AYA 7] | We tell our family and friends [when we are in the hospital], and then they show up for lunch, and then they feed us meals. [Parent 5] |
| My mom and I don’t talk a lot . . . we have a kind of a rocky relationship . . . [my illness] just ends up being one of those not-talked-about things. [AYA 5] | ||
| Seeking out others with serious illness | One of the first things I do when I’m admitted is I click onto my Facebook group and I’m like, we’re in trouble, we’re in the hospital, who’s been down this road before . . . and there will be 30 mothers who answer me within an hour. [Parent 8] | |
| Benefiting from interprofessional care | We use some mental health organization . . . I vent to them . . . and I get that emotional support. [AYA 5] | [Our son’s] got a really good group of personal care attendants who love him and they’ll come and light up his day and light up our day. [Parent 5] |
| I always put a lot of faith in the social workers—they are a great liaison. [AYA 7] | I think every parent should reach out to [palliative care] because they can give you a lot of support. [Parent 1] |
| Domains, Key Categories, and Subthemes | AYAs | Parents |
|---|---|---|
| Relationships | ||
| Trust | ||
| Recognizing clinician expertise | Communication is a big factor, and it’s something that my family and I have recognized over the years that does not happen very well . . . because you’re putting your health and you’re wanting to trust these people that say my name’s so-and-so, I’m with this team and we’re going to get you better. [AYA 7] | One of his doctors . . . he referred me to another neurologist, and I said, why do you want me to see this guy . . . and he said because he’s very comfortable with end-of-life discussions, and I think he’s going to be a good asset for you. And I was so grateful for that advice, insight, and compassion . . . and [steering] me toward somebody who would feel comfortable talking with our family. [Parent 8] |
| This one doctor said . . . “Put her on the vent, and then you can have the conversation” . . . And then as time progressed . . . make educated decisions instead of just an emotional decision. [Parent 3] | ||
| Following child/parent expertise | I felt like I was dismissed. I felt like I said something and he was just like, “yeah, okay,” and for all of the pain and all of the suffering and all of the fortitude—all of those things to get to this point—I don’t think that anyone deserves to be talked to like that who’s dealt with such larger than life things that are just really, really hard to deal with. [AYA 7] | Parents know their kids the best . . . I think just showing that you care and then whoever they connect with would be the go-to person to talk to. [Parent 3] |
| There’s an issue for doctors of how do you know if you can trust a parent and how do you know when to listen to a parent and not? I mean, for all he knew I could have been [a] parent who was trying to do something really out of the realm of what was logical. So I get it, that he didn’t know me, so why should he necessarily blindly trust what I was saying . . . I get that it’s a two-way street, but nine times out of ten I think – you can respect what the parent is saying. [Parent 8] | ||
| Fostering collaboration | ||
| Making the extra effort | I feel like [my transplant coordinator] has been there literally through every single step of my life . . . Some people you can tell that they put their whole heart into their job, and they care about their patients. [AYA 5] | There’s a doctor there who . . . I’ve known him for 20-something years, and he used to call me at home after we were discharged to see how we were doing . . . and say, you know, it was a tough week, are you guys okay? . . . And I just always felt like that really made an impression on me . . . it’s like the doctor that goes that extra step. [Parent 8] |
| It’s just some of them you just know that they’re gonna fight for you and others not so much. [AYA 4] | ||
| Knowing what’s important to the child/parent | I want my health but I also want a life. I want a life to be able to live and flourish with and so on, so I think that my doctors, they get that. [AYA 7] | I feel like her team does listen to her. They try to get her home as much as they can because they know her [priorities]. [Parent 2] |
| I feel like you should know and be invested in a patient rather than just a name on a piece of paper. [AYA 4] | [My son’s clinicians] are almost like family . . . they know what I want . . . and they know when you’re here it’s difficult. [Parent 1] | |
| Feeling heard and understood | [She’s] been my nurse for a very, very long time, so I’m definitely—I feel very comfortable with her in talking about everything. [AYA 5] | I think it’s a two-way street . . . I work much better with a specialist who’s collaborative and who’s willing to listen. [Parent 8] |
| I would no sooner have wanted to discuss the future of my child’s care with this guy because I didn’t trust him in the present . . . He was doing nothing to make me feel heard and to make me feel comfortable. [Parent 8] | ||
| Resources | ||
| Information needs | ||
| Gaining medical knowledge | I’m just listening to you because you’re the doctor and we, as in patients, don’t know anything . . . but I never realized that you can adapt and tell them that, oh, you want this and you don’t want that. [AYA 6] | I didn’t know anything when I first started . . . And now I know him . . . I’m [not] a medical person, but I know everything it takes to keep him going. [Parent 1] |
| Navigating the hospital system | It would be kind of ridiculous to have just a direct like batman signal out to your [subspecialists] and just be like you know you always have to be available to me. [AYA 5] | There’s no routine when you first get here. You don’t know where anything is. You don’t know what you’re doing. What am I going to do with my laundry? . . . Food. [But now] it’s like I’ve lived here for a year. [Parent 1] |
| If I can’t get my [child’s] doctor . . . they at least send a token somebody, but I will E-mail the doctors directly myself and say, we’re here, can you come down? [Parent 8] | ||
| Making sense of life with illness | ||
| Leaning on spirituality | I have a back-and-forth relationship with how I feel about god . . . I just like the community of people, and that’s my church—[it] is the people. [AYA 5] | I think spiritually, when I know that I know, then I’m adamant . . . I’m talking about my child’s life. So I believe it’s definitely a divine intervention. [Parent 3] |
| I think everybody gets closer to God when your kid is not well. [Parent 4] | ||
| Finding personal meaning | We were the initial study group for if [this drug] was going to be used . . . and it turns out that it’s one of the most widely used drugs now . . . and so I feel very proud of that . . . through our struggle, something really good [came] from it. [AYA 7] | It’s beautiful . . . When you have a special needs kid or a kid that’s not healthy or that has challenges, you love them strictly for who they are. [Parent 4] |
| Supportive community | ||
| Engaging with family/friends | For me, my family unit is extremely important. They’re my rock, and they’re my support network. [AYA 7] | We tell our family and friends [when we are in the hospital], and then they show up for lunch, and then they feed us meals. [Parent 5] |
| My mom and I don’t talk a lot . . . we have a kind of a rocky relationship . . . [my illness] just ends up being one of those not-talked-about things. [AYA 5] | ||
| Seeking out others with serious illness | One of the first things I do when I’m admitted is I click onto my Facebook group and I’m like, we’re in trouble, we’re in the hospital, who’s been down this road before . . . and there will be 30 mothers who answer me within an hour. [Parent 8] | |
| Benefiting from interprofessional care | We use some mental health organization . . . I vent to them . . . and I get that emotional support. [AYA 5] | [Our son’s] got a really good group of personal care attendants who love him and they’ll come and light up his day and light up our day. [Parent 5] |
| I always put a lot of faith in the social workers—they are a great liaison. [AYA 7] | I think every parent should reach out to [palliative care] because they can give you a lot of support. [Parent 1] |
Relationships: Trust and Fostering Collaboration
Trust was manifested through the themes of recognizing clinician expertise and following child/family expertise. AYAs described how important trust was with their clinicians and some shared feeling that their lives were literally in their clinicians’ hands.
“To say that I trust in their judgment, or I trust in their abilities, I think is a big understatement. I literally put my life into their hands.” [AYA 7]
Trust was felt by participants when clinicians were able to reciprocate trust and also follow the expertise of the child/AYA or parent.
“I’ve been doing this for years, so I kind of have a plan of my own. But I work with [doctors]. I mean, we’re all a team here, and the big thing is to work with each other.” [Parent 1]
According to participants, relationships were also promoted by fostering collaboration, which included themes of making the extra effort, knowing what is important to the child/parent, and feeling heard and understood.
AYAs and parents wanted to know that their clinicians were going to go the “extra step” to get things done or to care for them and/or their child.
“The doctors can take that leap and not just, ‘Okay, we’ll see you tomorrow on rounds, have a good day’ and run out of the room—instead—be a person and really take that extra step and make that connection.” [AYA 7]
Similarly, relationships with clinicians manifested through knowing the child/parent and knowing what was important to them. For example, AYAs described having clinicians they felt they could consistently go to with questions when issues arose. Parents also described the impact of clinicians who knew their child’s particular needs and could help guide them through medical decisions.
“If we were to come with a new admission and [the clinicians] could say, ‘We know that you want to see [your child] sparkle, we know that you want to be sure that he’s got a good quality of life,’ that would be great—if I felt like people already knew that.” [Parent 5]
“We’ve been together for a long time [in the ICU], so they kind of have the same views I do, and they know what I want [for my child] and they try to help me do it.” [Parent 1]
Particularly in advance care planning discussions about end-of-life care, parents wanted clinicians with whom they had rapport and comfort. If participants did not feel a sense of collaboration, they disengaged.
“In my mind was, ‘Wow, I’m about to have a conversation about whether or not [my child] will live or die, and these are not the people who have been the warmest to me or made me feel most at peace and comfortable.’” [Parent 5]
Finally, participants reported that collaboration stemmed from feeling heard and understood.
“When they go that extra step to make a family feel heard and validated and appreciated, it goes a long way.” [Parent 8]
Resources: Information Needs, Making Sense of Life With Illness, and Supportive Community
For information needs, participants felt that gaining medical knowledge and an understanding of how to navigate the hospital system were essential resources that helped them cope with their or their child’s CCC.
“A lot of parents don’t have any medical background … you’re kind of at [the medical team’s] mercy. Like when I first came in, I let them do whatever they want[ed]. I wish I knew what I know now because I probably would have done things differently.” [Parent 1]
These information needs were met over time as AYAs and parents became more well-versed in their/their child’s particular CCC and hospital care.
“I see a musician going by. How do you get to do that? … A lot of us don’t know—I mean, you have to ask for it … the fun stuff that the hospital has to offer.” [Parent 6]
Participants also discussed the importance of making sense of life with illness to build their own internal resources. For some, this “sense-making” centered on leaning on their spirituality. For other participants, they described a lack of traditional forms of spiritual practice and the need for different concepts that helped with personal meaning-making. These included feeling like a good parent and/or growing personally through their parenting experience.
“I always believed in something that’s a higher power … almost like a karma-driven thing of ‘Be a good person, promote good, give off good and in a perfect world that will come back to you.’” [AYA 7]
“We don’t have a faith in God … I just want to feel like when we get to the end, we can say we did what we could for him, and we did good. We know we did our best by him.” [Parent 5]
Finally, resources included the supportive community that surrounded participants. This included engaging with family and friends.
“I have a best friend, and … just staying in contact with her is my emotional support.” [AYA 5]
Support from other parents of children with CCCs was another aspect important to the supportive community that sustained participants.
“That was just a really important thing for me to know—that I have other people out there that are experiencing the same thing, that I can talk to and get information and suggestions [from].” [Parent 9]
Additionally, participants described benefiting from interprofessional care such as mental health professionals, child life specialists, or home nurses who sometimes felt like family to children with CCCs and/or their parents.
“Our caretakers are closer to us and [our son] and [our son’s] medical situation than any of my siblings are, and even my dad … It’s not family, but they’re kind of like family.” [Parent 5]
Discussion
This qualitative study of AYAs with CCCs and parents revealed key categories and corresponding themes within the domains of relationships and resources that support serious illness care. Trust and collaboration were considered by participants to be essential for relationships with their and/or their child’s clinical team. Harnessing the necessary information, sense-making with illness, and supportive community were crucial resources. In aggregate, these aspects of care were imperative to facilitating and optimizing supportive serious illness care.
In our study, relationships centered on knowing the child and parent and the sense of collaboration and partnership felt with clinicians. When relationships did not exist, participants disengaged with clinicians which hindered communication about treatments and end-of-life care. These findings are similar to other studies among children with CCCs and their parents, in which the need to feel valued, seen, and heard as a patient and/or parent were essential for effective clinical partnerships and compassionate communication.9,33,34 Similarly, resources identified by participants in this study that supported them were also aligned with other studies.10,35 In these studies, supports centered on knowledge acquisition for the AYA/parent and access to psychosocial resources. It also included having an illness community to draw on in times of need, both for information and for perspective, grounding, and strength as well as a way to help others.27,36 These aspects have been shown to be important among other seriously ill AYA/adult patient populations and their family caregivers.28
What this study adds is a more nuanced understanding of the aspects of relationships and resources that support care among AYAs with CCCs and parents. Specifically, many of the key categories and themes identified by participants in our study had both tangible and intangible components. For example, for participants, trust had to do with intrapersonal aspects of feeling trusted as a person as well as interpersonal aspects such as demonstrating trusting behaviors (ie, collaboration, openness to the patient/parent perspectives). Making sense of life with illness was described similarly because participants shared that there were internal aspects such as spirituality as well as external aspects like helping others.
Additionally, many of the key categories and themes of relationships and resources revealed the distinct yet interconnected nature of these aspects of care. For example, the concepts of listening and feeling heard by clinicians were present in many of the aspects important to relationships such as aligning with the best interest of the child/parent, knowing the child/parent, and working with them toward their goals. These overlapping aspects of relationships and resources create complexity because aspects of supportive relationships and resources may influence one another in mutually reinforcing ways. These connections likely are impactful in clinical care. For example, children/parents who feel they have more resources (whether through medical knowledge or the support of family and friends) may also feel more comfortable with advocacy for themselves/their child.37 Additionally, child/parent– clinician relationships that have more trust may translate to some children/parents gaining broader access to resources and supportive services in the hospital.38
Being mindful of these aspects of care can help clinicians strengthen relationships and resources for all patients/families to counteract structures that further disparities.39–41 Specifically, differences in access to supportive services and resources is imperative. For example, it is crucial to consider who receives extra time with clinicians or more mental health professional support because these differences can have impactful consequences in other areas of supportive care. Additionally, patients and families who feel more empowered to advocate for hospital resources may be disproportionately receiving these supports, such as music or pet therapy. There are also opportunities to consider further integration with social supports from the community and online social networks and organizations into everyday care because these may be the preferred ways that some children/families receive relational and resource supports.42 Innovative mechanisms to maintain community integration of family and friends, potentially using virtual platforms, may be another way to support patients and families and broaden the relationships and resources all people receive. Novel interventions and programs that are designed to share information with patients/families about hospital navigation,43 engage clinicians with patient/parent expertise,44 and promote the clinical team’s knowledge of the child’s/parent’s goals are critical areas for further development.45 Future work is needed to explore relationships and resources that support serious illness care more fully, to understand differences within and among different patient populations, and to develop interventions that promote these essential aspects of care.
Limitations
Our study has several limitations. Although it was conducted at 2 sites, we had a small sample size of predominantly white females, which limits transferability to more diverse child/parent populations. Additionally, all participants were English-speaking, further limiting our ability to explore the perspectives of AYAs and parents of children with CCCs who prefer a language other than English. This study was a secondary analysis of work conducted to develop a serious illness communication program and therefore aspects important to relationships and resources may have been missed. Results should therefore be considered a starting place on aspects important to patients and families within these domains. Despite this, much of the data shared by participants centered on these topics, indicating that these domains and their corresponding key categories and themes are impactful. Additionally, many AYAs and children of parent participants died within a year of the study potentially limiting information about serious illness care for CCCs earlier in the disease trajectory.
Conclusion
This study suggests that there are aspects of clinical relationships and internal and external resources that effectively support children with CCCs and their parents during serious illness. Cultivation of these supports through innovative interventions and attention to children/AYAs and parents who may have more needs in these areas may improve the communication and connection provided around serious illness care.
Acknowledgments
We thank the participants who generously shared their ideas and perspectives for this study.
FUNDING: This work was supported by the Arthur Vining Davis Foundations (G-1805-18676; PI: DeCourcey). Funding for Dr Jori Bogetz is supported, in part, by the National Palliative Care Research Center Kornfeld Scholars Program Award and the Cambia Health Foundation. The funders/sponsors did not participate in the work.
CONFLICT OF INTEREST DISCLOSURES: The authors have indicated they have no potential conflicts of interest relevant to this article to disclose.
Dr Bogetz conceptualized, drafted, critically reviewed, and revised the manuscript; Drs Revette and DeCourcey and Ms Partin conceptualized and conducted the study and critically reviewed and revised the manuscript; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
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