Quality domains in home-based pediatric hospice and palliative care: adolescent and young adult perspectives

Abstract

Background

Current United States palliative care practice guidelines are intended to cover care across all age groups. Previous research with pediatric providers and caregivers concluded that pediatric hospice and palliative care have unique attributes. Not known is how adolescent hospice and palliative care patients understand quality palliative care. The purpose of this study was to characterize and define quality of care domains as described by adolescent and young adult patients receiving home-based hospice and palliative care.

Methods

Semi-structured interviews with 10–26 year-olds who received home-based hospice and/or palliative care visits in the prior three years at six diverse sites in the United States. Data were analyzed using Krippendorff’s semantic content analysis methodology.

Results

There were 32 participants (63% female) who had a median(range) age of 17.5 (10–26) years old, and 69% (n = 22) were White. The domains with the highest number of themes were Structure and Processes of Care and Compassionate Care.

Conclusions

The results address an important gap by including adolescent/young adult patients’ voices regarding delivery of home-based hospice and palliative care. Clinical implications include prioritizing and making time to build trusting relationships directly with the AYA, empowering them to participate in their care to the extent appropriate and prepare for transition to adult care when needed, providing support for family members, and training for all providers in generalist spiritual care.

Supplementary Information

The online version contains supplementary material available at https://doi.org/10.1186/s12904-026-02208-8.

Background

Current practice guidelines for hospice and palliative care are intended to address all populations. As the field of palliative care has developed, the need to refine the terms and definition of quality palliative care to fit certain groups more closely has become more apparent. One such group is adolescents and young adults (AYAs) receiving home hospice and/or palliative care. Thienprayoon and colleagues’ work helped to advance understanding of characteristics that distinguish pediatric hospice and/or palliative care from that of other groups. Using the National Consensus Project’s (NCP) Clinical Practice Guidelines as an initial conceptual model, they used a Delphi process through which pediatric home-based hospice and palliative care (HBHPC) clinicians identified two novel domains pertaining to HBHPC: Continuity of Care and Bereavement [1–3]. Their subsequent work, inclusive of caregivers (typically parents) of pediatric HBHPC patients identified another domain: Compassionate Care. The discovery of these three domains indicated that pediatric palliative care domains had not been fully identified to that point [4]. Their work was limited to providers and caregivers from a single state in the United States. Using the same conceptual model as Thienprayoon, Boyden and colleagues developed a caregiver-informed measurement tool, EXPERIENCE, which emphasized physical and emotional support needed primarily by the ill child’s family caregivers [5–7]. Together, these studies suggest that high-quality HBHPC, as defined by caregivers of the seriously ill child, integrates clinical excellence with compassionate, coordinated, and family-centered care.

A knowledge gap exists regarding how AYAs patients themselves understand and describe quality HBHPC. The involvement of AYAs in their own care and intervention development is critical, and understanding their perspectives and values about palliative care is essential to fully meet their care needs. The identification of pediatric perspectives and their integration with clinician and caregiver perspectives would make possible an accurate definition of HBHPC quality domains and would inform program development and evaluation. The purpose of this study was to characterize and define quality of care domains as understood and described AYA patients receiving HBHPC.

Methods

Participants

This study was approved by the institutional review board (IRB) at Akron Children’s Hospital (Akron, OH, USA); all recruiting sites’ IRBs ceded reliance to that IRB. Participants were recruited from six geographically diverse sites in the United States. Inclusion criteria were: 10–26 year olds receiving or having received HBHPC at one of the participating sites in the three years prior to enrollment, having the ability to speak English or Spanish sufficient to complete the assent/consent process and participate in an interview, and having a caregiver/guardian able to speak English or Spanish sufficiently to complete the consent process. AYAs receiving hospice and/or palliative care exclusively in inpatient and/or ambulatory settings were excluded. For this study “home-based” hospice and/or palliative care was defined as care delivered when the AYA was in their home; this included provider in-home and telehealth encounters [8–10]. There are multiple definitions of “adolescent.” The World Health Organization defines adolescence as 10–19 years old [11]. We thus set age 10 years as the minimum eligible. For the upper age limit, the Lancet Commission’s 2018 definition of “adolescence” as 10–24 years was used with one modification: the range was extended through age 26 years because this is the latest age of transition from pediatric to adult care for children with chronic diseases of childhood, and the age through which children may be carried on parental health insurance under the Affordable Care Act [12, 13]. This also recognized the continuing maturation of adolescent brains into the middle-20s [11]. Manuscript preparation followed the COREQ guidelines [14].

Procedures

Eligible AYAs 18 years and older (or their caregivers if the patients were 10–17 years of age) were informed of their eligibility by study staff during inpatient/ambulatory encounters (if one was scheduled in the next two months) and by study information sheets sent to all other eligible persons via mail, email, and/or electronic health record messaging. Those interested completed the informed consent process (and assent, if appropriate) and an interview was scheduled. Interviews were conducted by one of eight study staff trained by the first and senior authors (see Table 1 for attributes and qualifications). A semi-structured interview guide (SSIG) was developed for this study based on prior work by Thienprayoon and colleagues and revised based on investigators’ feedback, including omission of items related to bereavement care (this SSIG and the two versions described below are available as Additional Materials) [1, 2, 4].

Table 1.

Interviewer attributes and qualifications

Interviewer	Attributes and qualifications
1	Research Coordinator, female, Asian, non-Hispanic, English speaking, doctoral degree
2	Research Coordinator, female, no racial identity, Latina/Mexican American, bilingual English and Spanish, Master’s degree
3	Research Coordinator, female, White, non-Hispanic, English-speaking, Bachelor’s degree
4	Research Coordinator, female, Black, non-Hispanic, English-speaking, Bachelor’s degree
5	Research Coordinator, female, White, Hispanic, bilingual Spanish and English, Master’s degree
6	Research Coordinator, male, Asian, non-Hispanic, English-speaking, Master’s degree
7	Research Coordinator, male, White, Hispanic, bilingual Spanish and English, doctoral degree
8	Palliative Care researcher, male, White, non-Hispanic, English-speaking, doctoral degree

Interviews were conducted using an online video platform and recorded, transcribed, verified for accuracy, and deidentified by study staff. Participants were normally at home during the interviews, the mean (standard deviation) duration of which was 43(17.4) minutes. Caregivers were permitted to be with their AYA during an interview due to medical necessity or at their request; they were asked not to prompt the AYA for responses. If they did prompt the AYA, the AYA’s response was not considered valid data. If a response was unclear to the interviewer, the caregiver was invited to restate the response and the restatement was accepted as data after repeating it back to the AYA for confirmation.

Questions related to Domain 7 (Care at the End of Life) were asked only of AYAs 15 years and older. The study interview guide did not include items from Domain 8 (Legal and Ethical Aspects of Care) because the topic was not considered relevant to caregivers as surrogate decision-makers (due to AYA age or cognitive abilities). Domain 10 (Bereavement) was not included because it pertains to care of the pediatric patients’ survivors. A second, simplified version of the SSIG was created for those AYAs with limited ability to carry on extended conversations or who were pre-abstract thinking in their cognitive development. Items were fewer and more concretely worded. This version was normally used with AYAs 12 years old and under, for those whose caregivers indicated their AYA would benefit from this version, or for the interviewer to use as an alternative if the AYA struggled to understand the primary version of the SSIG. This version also did not include items related to Domain 7 (Care at the End of Life). To further maximize inclusion of AYAs with diverse cognitive abilities, a third version was adapted from the simplified SSIG at the request of a 10-year-old’s caregiver to include ten dichotomous questions on paper where the yes/no response could be circled. Initial SSIG versions were reviewed for appropriateness by a study team member with a child development background and piloted with two AYA patients. A Spanish translation was obtained commercially, and reviewed by study staff whose first language was Spanish. Participants received a $50 gift card following a completed interview.

Analysis

Krippendorff’s semantic content analysis methodology was used; the unit of response was the actual transcribed content in answer to each interview question, and the unit of analysis was the phrase, since multiple phrases of meaning were likely to occur within a unit of response [15, 16]. This approach facilitated the identification of first level codes and their frequencies within and across individual interviews and the subsequent development of themes of meaning, and allowed examination of interrater agreement. Acceptable interrater reliability was set at 85% or higher; three study team members coded the interview data together initially to develop the coding dictionary. The next two interviews were coded independently and codes were compared. Subsequently, the team coded independently and engaged in periodic purposefully planned coding of the same interview content to again assess their coding agreement. If coding dropped below 85%, joint coding recommenced until the acceptable agreement rate was met or exceeded. Within each domain, codes that were thematically related were grouped and a definition was crafted with one or more exemplar quotations added. Themes, definitions, and quotations were reviewed by the study team and revised for clarity. Data were organized using Microsoft Word.

Results

Thirty-two AYAs were interviewed; n = 17 were 10–17 years old and n = 15 were 18–26 years old. Demographic data are presented in Table 2. Themes, definitions, and exemplar quotations are presented in Table 3. The standard SSIG was used with 23 AYAs, the simplified version with six; items were drawn from the simplified version when two of the AYAs struggled to understand one or more items in the standard version. The 10-item dichotomous response version was used with one AYA.

Table 2.

Participant demographic characteristics

Characteristic		M(Standard deviation)	Mdn(Range)	n(%)
Sex (female)				20(63)
Age (years)		16.8 (4.2)	17.5 (10–26)
Race	White			21 (66)
	Black			3 (9)
	Other§			3 (9)
	Asian			2 (6)
	Multiple races†			2 (6)
	Missing			1 (3)
Ethnicity	Non-Hispanic			21 (66)
	Hispanic			8 (25)
	Other			2 (6)
	Missing			1 (3)
Insurance	Public			21 (66)
	Private			5 (16)
	Private and public			3 (9)
	Other			1(3)
	None			1(3)
Rurality	Non-rural county of residence			28 (88)
	Rural county of residence			3 (9)
	Missing			1 (3)
Primary diagnostic category	Hematologic/oncologic			12 (38)
	Neurologic/neuromuscular			8 (25)
	Genetic/chromosomal			6 (19)
	Cardiac			2 (6)
	Pulmonary			2(6)
	Missing			2(6)

^†Self-reported multiple racial information included “White and Mixed” and “Asian and Filipino”

^§Self-reported racial information included “American Indian,” “Hispanic/Latino,” and “Asian.”

Table 3.

Themes, definitions and exemplar quotations

Domain 1: Structure and Processes of Care Clinical Implications: Palliative care occurs across the health spectrum. It necessitates the involvement of an interdisciplinary team that is trained and supported to do the work. Care focuses on promoting the physical, psychological, social, and spiritual domains of quality of life. It is delivered in a safe environment with respect for the patient’s and family’s values, preferences, and wishes. The palliative care program strives for best practices inclusive of quality assessment and performance improvement.
Questions: Can you please tell me what you think ”palliative care” and “hospice” mean? When you think about your HBHPC, what does “safe” care mean to you? Do you feel that your HBHPC team is comfortable caring for someone with your condition (if yes, what makes you feel that way)? What’s it like to have providers see you in your home rather than you going to see them in the hospital or clinic? What do you like most/least about your provider coming to your home or visiting on telehealth to see you/your family? Did anyone ask you what you thought about having HBHPC provide care for you at home or by telehealth (10–17 year olds); What role did you have in deciding to have HBHPC provide care for you at home or through telehealth (18–26 year olds)? Do you know why your parents decided to have HBPHC come to your home/come by telehealth (10–17 year olds); What were some reasons you decided to enroll in HBHPC (18–26 year olds)? What does HBHPC do for you when they come to your home? Is HBHPC a good thing, or is it annoying?
Theme	Theme Definition	Persons responding (%) and number of responses	Exemplar Quote
AYA understanding of palliative and hospice care varies	Patients offer diverse, though positive, descriptions of the meaning and purpose of this care and the roles of home-based clinicians.	23 (72) x43	“(hospice) It just means like, a nurse or doctor comes to the house…they did stuff with my wound and they took care of me” (14006) “…I can separate them…palliative care being more like the in-hospital, you come get them kind of thing. And hospice is more of they come to you a bit later on in the stages of cancer.” (14016) I think the palliative care team is more of the seeing how people are doing mentally, it’s like the therapy but not therapy…That’s what I got from my palliative care team. (14020)
Home-based hospice/palliative care offers emotional safety with care team	AYAs describe home visits as physically more comfortable, and warm connection with clinicians that allows some AYAs to be more open about feelings or worries	21 (66) x41	If I had a problem, they’d work their hardest to come up with a solution, and usually they did, so I felt safe (11006) “And, you know, obviously being telehealth, there’s not much physical contact. And that provides a sense of security.” (14016, telehealth HBPC)
Being helped physically at home by clinicians	Patients describe receiving positive assistance and encouragement with daily care routines, medications, procedures, complementary therapies, and problem-solving, all of which patients viewed as contributing to their health.	21 (66) x46	“I guess they help me on my social anxiety.” (15006) “[Child life] like, does activities. Medical play. It’s just fun.” (12005)
AYA involvement in choosing home-based care varies	As age, cognitive and emotional abilities increase, so does the role of AYAs regarding enrollment in this form and location of care from no role to requesting enrollment.	20 (63) x39	“I didn’t get to decide. It just sort of happened.” (15013) “I think [Cardiologist] said something about like offering it to me. And I I didn’t really know what it was, so I just kind of agreed to it… And then like, palliative care explained what they are. And I was like, “OK.” I just agreed to it.” (14018)
AYAs perceive home-based care as valuable for self and family	Positive aspects include perceiving that clinicians look out for them based on how patients answer clinician questions, focus on them without other interfering distractions, tend not to initiate intrusive procedures, and include siblings in the visit.	19 (59) x44	“I enjoyed that their focus was really on me. There wasn’t anything that distracted them or they allowed to distract them.”(14016) “I’ve enjoyed their immediate care and question-asking. They’re always very hands-on and liberal with examinations or pills. And they’re not unafraid or unable to ask even my parents questions for what their opinion is.” (14016)
Home-based hospice/palliative care simplifies a complex life	Home-based care allows AYA to remain comfortable at home, avoid burdens of travel to and time spent at the hospital.	17 (53) x34	“that we get to stay at home and we don’t have to go all the way to (city name)…almost two hours. I do like long car rides but I’d rather kind of stay at home.” (14006) “at home, it’s more useful, more comfortable” (telehealth) (14019)
Recognizing disadvantages to my home-based care	Least favorite aspects include house cleaning, interrupted nap time, feeling ill and not wanting to talk, missing the face-to-face interaction when home-based care is delivered by telehealth	10 (31) x15	“I feel like if you’re going to do palliative care, you also need to go in person because they can help you a lot more while you’re there…” (14010) “It’s like having my momma hugs without having my mom here.” (14010)
Wanting more time to tell my story	AYAs recommend increased opportunities (longer or more frequent visits) to talk about themselves and their health situations and/or the use of expressive therapies not dependent on their talking.	4 (13) x 4	“I think they ask too many questions…A lot of the time when I meet with them or the times I have met with them, they have been like they ask a question, I answer it and I try to elaborate on it, but they ask another question. So I have to do that question and then it keeps going….Listening to a full response” (14002) “I feel like there should be more support for the parents… A little more counseling. I don’t know whether what other type of support there would be. I just know that it’s a… It can be a lot, I I can be a lot. If that makes sense.” (15013)
Domain 2: Physical Aspects of Care Clinical Implications: Physical comfort represents a core feature of compassionate care. Expert pain and symptom management sets the foundation of palliative care and promotes psychological, social, and spiritual quality of life.
Questions: Have you had difficulties with pain while enrolled in HBHPC? How satisfied are you with those symptoms have been managed/ Have you had difficulties with other symptoms (e.g., sleep, nausea, appetite)
Theme	Theme Definition	Frequency	Exemplar Quote
Being helped at home by family	Parents and siblings assist AYA with daily activities such as getting ready in the morning, preparing food and needed supplies.	15 (47) x20	I’m blessed to have the mom that I do have. Oh man, she…she…she…she’s one of the main reasons why I’m still here. And she’d do anything for me by any means necessary. And I mean…or I do genuinely mean that. You know, if she had to storm the gates of hell, you know, she’d do it in a heartbeat (14003) “…taking me to appointments, prepping me food and just overall making sure that my well-being is as best as it can be.”(14016)
Seeing the need for help with physical and emotional symptoms with both.	AYAs value the efforts by clinicians to manage distressing effects of their illness through pharmacologic and non-pharmacologic means.	19 (59) x48	I’ve always kind of struggled with depression even before being wheelchair bound. And when everything…when I had ended up kind of paralyzed in a wheelchair, it felt like the person who I was before had died and was replaced with who I am today. And it took me a really long time to kind of wrap my head around that and get over it in a way. And I think I’m in a way better place now than I was even a year ago, but I still have my down days (14003; 24:44)
We both work to help me HBHPC teams empower AYAs to participate in their own care as developmentally appropriate.	AYAs acknowledge the value of the home care team collaborating with the AYAs to manage aspects of care, including advocating for themselves within the health care system	5 (16) x8	“I’m big on advocating for myself” (14010) “…they reach out to my doctors for me, and then they’ll be like, OK. Well, we’ll reach out but you need to reach out as well and they hold me accountable for what to do and I appreciate that.” (14010)
Domain 3 Psychological and Psychiatric Aspects of Care Clinical Implications: Psychological and psychiatric assessment and services occur systematically using evidence informed screening, assessment tools, and interventions. Education for the patient, family, and staff is an essential element of management. Grief and bereavement services are fundamental aspects of palliative care for support staff, patients, and family. Services are appropriate to patients’ and families’ needs, goals, ages, culture, and level of development to reflect a multidimensional interventional strategy.
Questions: Some people with your condition are glad, sad, or mad, or scared. Has anyone from (HBHPC organization) helped you/talked with you about those feelings?
Theme	Theme Definition	Frequency	Exemplar Quote
Selectively, carefully discussing feelings with home-based clinicians and other	AYAs describe cautiously sharing emotions, including sadness, with family members and/or home-based team members, while recognizing that sharing emotions can be both helpful and hard.	15 (47) x36	“I don’t really tell them…but when I do, yeah, they help me…I just don’t like to open up.” (14011) “Usually when people ask me about my feelings, it can I guess make me more of that mood, make me feel sad. Like people ask me like, what’s wrong? I was just like, start slowly crying more and more.” (15006)
AYAs feel emotionally better when providers are in the home	Some AYAs describe being less lonely, less scared, and happier when team members visit.	10 (31) x28	“Always calms me down.” (12003) “Talking it out” (12007) “They just ask me if I have any more questions or concerns or anything, just basic questions like that.” (14018)
Helping me be more social	Some AYAs describe becoming more connected with others because of clinician encouragement	3 (9) x5	They help me be social by giving me the resources I really need to do that for myself. So that’s been a really big part of everything, so I can still go out and be a kid because I wasn’t really able to be a kid like I wanted to, so I still act like a kid. I go out and do fun things and stuff, so really being able to go out and enjoy my life is something that I need to do for myself. (14010)
Some AYAs report a experiencing difficult emotions	AYAs indicate feeling sad, mad, scared, and that family, friends and clinicians will witness these feelings and can at times help reduce them.	10 (31) x23	I think I’ve always kind of struggled with depression even before being wheelchair bound. When I had ended up kind of paralyzed in a wheelchair, it felt like the person who I was before had died and was replaced with who I am today. And it took me a really long time to kind of wrap my head around that and get over it in a way.”
Domain 4: Social Aspects of Care Clinical Implications: Each patient and family has a unique social structure. Understanding the social fabric of the patient and family promotes coping. Interventions support the social structure, including culture, values, strengths, goals, and preferences. The assessment of social aspects of care is the responsibility of the interdisciplinary team, which includes specialists in social aspects of care and pediatric populations.
Questions: Some people with your condition get lonely. How does HBHPC help you spend as much time as you want to with other people?
Theme	Theme Definition	Frequency	Exemplar Quote
‘They are here for my family and me.’	AYAs observe different forms of support for their siblings and caregivers by home-based clinicians.	25 (78) x38	“they’re not only there for you, but they’re also there for your parents as well and that’s really been a big help. They’ve reassured my mother, they’ve reassured my father,…” (14010)
‘Staff don’t just check on my illness.’ Staff engage AYA through playfully delivered care.	AYAs highly regard efforts by clinicians tailored to the patient to use medical play, crafts, and expressive therapies to help with using words or music to tell their stories	10 (31) x18	“Give stuffed animals IVs” (12005) “We made cookie brownies…that’s something special because I never really have a way to do it.” (12001) “I’m able to write, but it’s harder to think of things on your own. She helps with like creating the characters.” (12001)
Domain 5: Spiritual, Religious, and Existential Aspects of Care Clinical Implications: Spiritual, religious, and existential issues are a fundamental aspect of quality of life for patients with serious or life-threatening illness and their families. All team members are accountable for attending to spiritual care in a respectful manner. In order to provide an optimal and inclusive healing environment, each palliative care team member needs to be aware of his or her own spirituality and how it may differ from fellow team members and those of the patients and families they serve.
Questions: How do you/your family cope with your illness? What coping skill helps you the most? Is faith or spirituality important to you? If yes, how does this help you cope? How does HBHPC provide spiritual care to you or support your beliefs?
Theme	Theme Definition	Frequency	Exemplar Quote
‘No one talked with me about my spiritual beliefs’	AYA reported that neither they nor clinicians initiated discussions about religion or spiritual health during home visits with some noting they would have liked to have experienced that.	18 (56) x23	“I don’t think I’ve ever had that. Some beliefs that I do believe in that’s more kind of in a gray area. Christianity and some pastors would probably - will call it a heresy - but to me it’s just second nature. And I think, a chaplain would be kind of more open to that.” 14,003 “A chaplain? No. A chaplain was with me inpatient but not telehealth.” 14,018
‘Having spiritual beliefs helps me make sense of being ill’	Some AYAs discuss existential, spiritual, and religious beliefs and practices, noting that these beliefs can be dynamic as distress levels change.	11 (34) x23	“I have faith that there’s more to life and that there’s a reason that I have what I have…a reason I got chosen to go through what I have to go through. Maybe there’s like some reward waiting in the afterlife, you know.”(14011) “It helps me cope by letting me know that I can see God…umm He’s always there.” “(15006)
Domain 6: Cultural Aspects of Care Clinical Implications: Culture is a source of resilience for patients and families and plays an important role in the provision of palliative care. It is the responsibility of all members of the palliative care program to strive for cultural and linguistic competence to ensure that appropriate and relevant services are provided to patients and families.
Questions: Can you give some examples of how HBHPC treats you as N. and not just any adolescent/young adult? Can you give some examples of how HBHPC treats you differently because you’re different from them?
Theme	Theme Definition	Frequency	Exemplar Quote
Appreciate being treated as mature individual	Some AYAs described liking the experience with home-based clinicians of being viewed as important, unique persons with their own preferences, and possibilities	6 (19) x8	“They treat me like the young individual I am. They don’t treat me like a child. They don’t treat me like I’m 45 years old…I know certain things and I feel like I’m pretty mature. So they speak to me as if I’m a mature person…” (14020)
Domain 7: Care of the Patient at the End of Life Clinical Implications: It is essential that the interdisciplinary team attends to the patient’s and family’s values, preferences, beliefs, culture, and religion to promote a peaceful, dignified, and respectful death.
Questions: (asked of AYAs 18–26 years old only, or younger with caregiver permission) Sometimes people write down how they want to be taken care of if or when they get sicker. Sometimes they use things call 5 Wishes, or Voicing My Choices, or one like those. Have you seen those documents or anything like them? Have you talked about them? Completed them? Have HBHPC providers ever discussed how you want them to take care of you if and when you become more sick? Has the way you wanted HBHPC to take care of you changed over time, and has the team talked about that with you? HBHPC sometimes talks very openly about dying and death. I’m wondering if that has happened, and what that has been like for you?
Theme	Theme Definition	Frequency	Exemplar Quote
AYAs unready for advance care planning conversations	AYAs report realizing the seriousness of their situation but not having considered or wanting to consider advanced care planning at this time	11 (100) x 18	“I haven’t had that conversation yet because we’re not putting that into the air…that’s not seeable.” (14020) “It was really hard filling out those questions and thinking about what I would want. Oh my gosh, this is actually real. I’m actually filling this out. I’m not even old enough to be filling this out yet.” (14010).
AYAs have preferences for advanced care discussions	AYAs want to feel ready and to have certain individuals be present in a certain location when speaking about these kinds of plans	3 (27) x8	“I was supposed to get a booklet in the mail and it arrived at a point where I didn’t want to deal with it, so I threw it away…I met a fellow who was amazing. He actually walked through the booklet with me and my dad while I was inpatient…for maybe an hour and he just sat there with me and walked me through everything.” 14,010 “…with my Mom, in my house…Because it’s the places that I know.” 12,001
Advance care planning can be helpful	Some AYAs may initiate such conversations and report doing so can relieve anxiety knowing that personal preferences will be carried out.	3 (27) x8	“I know that if I fill this out, it’ll be like a breath of fresh air and I can just be done with it.” (14010)
Domain 9: Continuity and Coordination of Care Defined as engaging in ongoing, open communication with each other to remain up to date on the child’s care, advocating across care settings for the child’s/families’ goals; providing support to child/family across care settings, helping them navigate a complex healthcare system, develops and review the plan of care for the child and family, allowing them to “know the child” to be familiar and able to anticipate the child’s unique needs.
Questions: Thinking of your HBHPC providers, do you see the same person/people each time? Would you rather see the same providers time after time, or have new providers?
Theme	Theme Definition	Frequency	Exemplar Quote
AYAs have reasons for wanting same home-based clinician or not	Some patients have – and are able to express- definite reasons for having consistency or diversity in who visits them in their home	27 (84) x32	“I think it’s very important to see different people because not a lot of people know about Mito (sic, mitochondrial disease) and not very many doctors do a lot of research. So I feel like it’s very important for other people to know who you are and know your story.” (14010) ”I like seeing different providers…because I’m a people person and I like to meet new people” (12008) “I’d prefer seeing the same person just cause they already have information on me and I’m going to have to communicate that same information to a new person.” (14016)
Domain 11 Compassionate Care Defined as families perceive HBHPC team members’ actions and presence as a comfort and source of support…HBHPC program decrease isolation, approach care from a sense of vocation of service rather than employment, interact compassionately, which includes nonmedical interactions that promote relationship-building, and approach the child with a keen awareness of the child’s unique, inherent value and humanity.
Questions: I’m wondering if HBHPC providers do things with you just for fun while they are with you—something besides just giving you medical care? Would you tell me how the HBHPC providers help you feel like they really care about you? What might an HBHPC provider do that would show they care about you (/more than just a patient/number/job)?
Theme	Theme Definition	Frequency	Exemplar Quote
‘My home care team likes me’	AYAs describes being emotionally connected to clinicians who ask them questions and listen to their answers, calm them, and occasionally contact them to inquire about how they are doing, all of which reduces their sense of being lonely	16 (5) x 23	“They’re not only my doctors and my care team, but they’re also like family because they not only care about my health, but they also care about me and how I’m doing as a person…they always say how much they care about me…” (14010)
‘They help me understand my condition and my choices’	AYAs value medical information shared and being included in care decision making	3 (9) x7	“It’s not extra, but an additional care that helps me understand my condition and manage my pain and…emotional support, pain support…inpatient and outpatient” (14018) They ask me what I want to do. And they don’t just make up plans by themselves. 12,001
‘We have a real relationship’	AYAs describe a connection with home-based clinicians that may include lighthearted moments, talking honestly, and feeling cared about and supported.	23 (72) x 29	“I think we get along really well. And I feel like there’s kind of a friendship or relationship that’s kind of built there to where I feel like, you know, I can talk to her about anything.” (14003) “Honestly, just still taking the time to see me. Most of the time, we just talk and it’s…I guess it means a lot to me to have somebody there that, you know, I could say almost anything to them within reason and others. There is no judgment. There’s just nothing but support. I just don’t really find that too often these days.” (14003)
‘They know me and my disease.’	AYAs perceive the home-based clinicians to be knowledgeable about their condition, able and willing to answer or find the answers to their questions, and to know when and how to share this information with the AYA.	11(34) x 19	“Yes, they really research it and talk to my doctors” (15013) “Next question please.” (15002)
‘They see me as who I am.’	AYAs perceive home-based clinicians as recognizing more about them beyond their illness and encourage them to be a part of age-typical activities.	4 (13) x11	“They make me feel like I’m free and I can do anything. They talk to me like I’m a real person.” (12006) “They just talk to me and get to know me…and then they will want to know who I am or what I am. They want to be interested in me and see what I like and don’t like.” (12006) “And she…you know, kind of just encourages me to…I guess seek opportunities I otherwise wouldn’t think to seek out or would want to seek out. Like it’s a possibility I may be doing some college classes. She’s sent me a couple of, I guess links to some…some foundations that do things for people like me and my situation - where it’s kind of like “make a wish,” but it’s other organizations. I think one of them is….I “think like a chance.” You’re like, I guess it’s kind of like the weekend get away or wherever to where that set up, you know, kind of a getaway to wherever you want to go and kinda get away from the routine of life, I guess.” (14003) “Coming to [hospital name] palliative care has absolutely changed my life. They’re not only my doctors and my care team, but they’re also like family because they not only care about my health, but they also care about me and how I’m doing as a person. And it’s almost like having my own my own group of mothers pretty much because they always say how much they care about me and they always ask, can I give you a hug at your next appointment we see you? And, it’s just they’ve helped me a lot.” (14010)
AYAs rate home -based hospice/palliative care highly	AYAs describe the ready availability of the home-based clinicians and their perception of being well cared for by them.	15 (47) x18	“A-plus… I couldn’t be happier with my care. They’re always there. They’re always one phone call away.” (14010)

The number of themes that emerged within each domain ranged from one to eight for a total of 30 themes across domains with the highest number (more than twice that of most other domains) in Domain 1: Structure and Processes of Care. This domain has a broader scope of clinical care, which may have contributed to the higher number of resulting themes. Though no single theme was reported by all participating AYAs, one theme was reported by nearly 82% (AYAs preferences for provider consistency), five themes were reported by 20 or more AYAs (61%-76%), 15 themes reported by 10 or more AYAs (30%-58%) and 8 themes by 9 or fewer AYAs (9%-18%). These frequencies indicate the individuality of AYA perceptions regarding HBHPC and the need, therefore, to carefully learn from each AYA their perceptions and care preferences and whether and how they change over time.

With the exception of Domain 10 (Bereavement) which was not addressed with participants, and Domain 8 (Ethical/Legal aspects), which was addressed indirectly through questions about goals of care discussions, the domains described by NCP and the pediatric domains described by Thienprayoon and colleagues were affirmed [2–4].

Domain 1: structure and processes of care

Eight themes emerged for this domain, with six identified by more than 50% of the participants. First, the majority of participants expressed varied understandings of what the terms “hospice” and “palliative care” meant to them. Second, two-thirds indicated that feeling emotionally safe was an important aspect of pediatric HBHPC. When AYAs felt safe with home-based providers, they reported being more willing to share their needs, goals, and values. Home-based care helped AYAs feel safe in several ways: first, they were more comfortable confiding in a trusted provider in the than multiple providers in an ambulatory setting; second, HBHPC did not make the AYAs feel “different” than other patients; and third, being home decreased the sense of stigma experienced in a hospital or other external setting.

A third theme from the AYAs was the importance of HBHPC providers helping them at home with activities of daily living, medication administration, and complementary therapies.

Fourth, AYA involvement in decision-making regarding HBHPC enrollment differed depending on their age and/or developmental level. Generally, their role increased over time from having no decision-making role, to being asked for their opinion, to deciding on enrollment in hospice and/or palliative care services. Fifth, AYAs identified a benefit of home-based care as having more time with providers to express themselves, and their sense that providers were more focused and less rushed in the home than in clinical settings. Sixth, AYA’s reported interpreting efforts to simplify a complex life as a sign of quality pediatric HBHPC, with half of the participating AYAs describing this aspect. Attributes included being able to remain in the comfort of their home, in contrast to the burden of traveling to a hospital (up to several hours each way, or the need to take a multi-hour bus trip) with medical equipment. Seventh, approximately one-third of the AYAs noted disadvantages to pediatric HBHPC. These included the interruption of their home routines, such as daytime naps, having to leave their room to participate in home-based visits, and the effect on their caregivers of having visitors (such as increased time cleaning and/or taking off work). Some AYAs receiving home-based care by telehealth reported missing the in-person interactions they enjoyed in ambulatory encounters. Eighth, 13% or four of the participants suggested improving HBHPC quality by allowing them more ‘time to tell my story’, increasing availability of expressive therapies, and increasing frequencies of home visits.

Domain 2: physical aspects of care

Three themes emerged in this domain. The first, verbalized by 60% of the participants, was that HBHPC teams provided physical symptom management with both pharmacologic and non-pharmacologic therapies and met medical equipment needs. Therapies included medication, psychological interventions, massotherapy, postural change, skin care, and coordination of durable care items. The second theme, mentioned by 47% of participants, was being helped at home by family. Caregivers and siblings assisted AYAs with activities of daily living. The third theme was that HBHPC teams empowered AYAs to participate in their own care as developmentally appropriate. This was named by 16% of the participants, all of whom were 18–26 years old; this theme included being taught medication management and appointment scheduling.

Domain 3: psychological and psychiatric aspects of care

Four themes emerged regarding psychological and psychiatric aspects of care. First, nearly half of the AYAs discussed selectively sharing their emotions with certain trusted HBHPC providers and/or with family. Many AYAs were reticent to discuss their feelings in the interviews; however, they indicated they were willing to share with specific providers with whom they have built trust, and this connection helped them process and cope with their emotions. Though sharing these emotions was experienced as difficult, they acknowledged the helpfulness of processing with others. The second theme, described by 31% of the AYAs, was the breadth of emotions they feel at times, including sadness, anger, fear, and loneliness. In the third theme, AYAs (31%) reported improved emotional well-being interacting with HBHPC providers who alleviated some troubling feelings and contributed to their sense of well-being. Finally, three (9%) AYAs noted that HBHPC providers supplied resources and encouragement for AYAs to engage more with others, which they attributed to their feelings of connection through socialization.

Domain 4: social aspects of care

Two themes emerged in this domain. First, ‘wanting my family to be supported’ was reported by 78% of the AYAs (n = 25) who described offerings of support for their family members from some HBHPC programs and staff. AYAs expressed appreciation and relief knowing their family members were being supported. In the second theme, AYAs expressed appreciation for providers engaging them in playfully delivered care. One AYA noted the inclusion of his brother and a stuffed animal in medical play with him as positive. Several statements by AYAs came in response to questions focused on other domains, which were nonetheless important aspects of social care. The first of these is their emergent sexuality and relationships, verbalized by one AYA by statements including, “I wish they were all girls” when referring to the home-based providers and, “I don’t think…they cannot help me for having a girlfriend” (participant 15002). The second is the social benefit of in-person home visits over telehealth. Exemplar statements from participant 14,010 included: “It’s like having my momma hugs without having my mom here,” and “Going to see them in person is more personable and you can connect in way more than you can over telehealth.”

Domain 5: religious, spiritual, and existential aspects of care

Two themes emerged; the first, verbalized by over half of the participants, was that no HBHPC team member talked about spirituality with the AYA. Participant 14,004 said, “Actually, we haven’t talked about that much. Almost nothing.” According to the AYAs, while few of them reported initiating religious/spiritual/existential conversations, neither did any provider, and at least some AYAs wished the topic had been raised. The second theme, endorsed by 34% of the participants, was that spirituality is an important topic in HBHPC. Participant 14,020 said, “My faith in God is what really helped me…when I was dealing with everything and my faith really solidified.” They were generally reluctant to offer additional details regarding their faith. Participant 16,001 said (referring to telehealth chaplaincy visits), “It helps me” and when asked how it was helpful, responded, “I don’t know.”

Domain 6: cultural aspects of care

The single theme that emerged in this domain, reflected by 19% of the participants, focused on AYAs feeling valued by HBHPC providers as individuals with their own preferences, values, and needs. They appreciated individualized care and wished to continue to be treated as the unique young adults they are.

Domain 7: care of the patient at the end of life

Three themes emerged in this domain. All participants who were asked these questions (n = 11) acknowledged that, whether in the present or the past, they felt unready to consider advance care planning or having such conversations with providers. A smaller group (n = 3; 27%) indicated they could envision such discussions under certain circumstances (which they did not specify), and an additional 27% described having had such conversations and in some cases initiated advance care planning conversations with their providers.

Domain 9: continuity and coordination of care

One theme emerged in this domain related to the AYA preference for having the same or multiple providers. While 84% of the AYAs expressed their preference for provider consistency, there was not a complete consensus. Some AYAs wanted to teach more providers about their condition; others did not want to have to tell their story to multiple people. A few stated they enjoyed the social interaction with multiple providers.

Domain 11: compassionate care

Six themes emerged from this domain. First was the importance of providers being physically in their homes (72%, n = 15 AYAs), facilitating a stronger sense of connection and improving their emotional well-being. AYAs perceived in-home care allowed providers to become better acquainted with the AYAs as individuals through discussion and/or playful activities. In the second theme, half of the AYAs shared that their strong emotional connection with HBHPC providers made them feel cared for and decreased their sense of social isolation. In the third theme, perceived provider competence was fostered by the AYAs’ sense that their HBHPC providers knew them well and asked insightful questions. Approximately 34% (n = 7) of participants perceived that providers were competent in treating both their diagnoses and their specific needs as individuals. In the fourth theme, 47% (n = 15) AYAs described wanting to be taken seriously and those who rated HBHPC highly perceived providers taking them and their thoughts seriously. In the fifth theme, three (10%) AYAs stated that they trusted that their HBHPC providers utilized their expertise to help the AYAs understand their own conditions and make informed choices about their medical care. In the sixth theme, wanting to be more than a patient receiving HBHPC helped AYAs developmentally be adolescents and young adults rather than always a “patient.” This was verbalized by 13% (n = 4) of participants, who experienced providers normalizing their experiences and adolescence, including through therapeutic play, and empowering AYAs to engage in age-typical activities apart from direct care interactions.

Discussion

This qualitative study presents themes and definitions derived from interviews with 10- 26-year-olds receiving HBHPC regarding their perceptions of quality pediatric HBHPC. Interpretation of the themes in light of the existing literature, of themes that cut across multiple domains, and clinical implications of the findings are discussed below.

Domain 1: structure and processes of care

The quite varied understanding of the meaning of “hospice” and/or “palliative care” among AYAs suggests the need for providers and caregivers to define in developmentally appropriate language the scope of the service they represent and their role in helping the AYA meet their goals of care. Clinical implications of Domain 1, according to the NCP guidelines, include promoting multidimensional aspects of quality of life in a safe environment. The AYA themes confirm the importance of a safe environment. Though a broad definition of patient safety has been a significant topic in the US for the past several decades, AYAs focused on emotional safety, rather than physical or medical. in this study [17]. Their sense of emotional safety seems to function as a gateway to significant encounters or communication with providers. This finding has implications for multiple domains including psychological and psychiatric aspects of care, care at the end of life, and compassionate care. Emotional safety has also been noted by caregivers as an important facet of pediatric HBHPC for both themselves and for their child [18]. The importance of the encounter setting to caregivers—the home—and its ability to influence the content of clinical encounters has also been previously described [19]. Shifting care from an inpatient or ambulatory setting to the home has been noted to shift the power balance from providers to caregivers and/or AYAs. Our findings in this domain also reveal from the AYA’s perspective that pediatric HBHPC does have a “shadow side” which includes disrupting routines for the AYA and family life. Providers should be cognizant of this and minimize the potential disruptions their home visit may cause.

Domain 2: physical aspects of care

While the AYA is the patient, their needs must be met by others, most often family members. Attention and care given to family members, within the available resources, is likely to strengthen them to provide better care. Quittner and colleagues have shown in families with a member being treated for cystic fibrosis, parents who have depressive symptoms are more likely to have adolescents with cystic fibrosis with depressive symptoms than parents who do not have depressive symptoms [20]. By caring for the family constellation, providers care for the AYA.

Medical advances mean that persons with significant conditions are living into adulthood and there is a need to empower and prepare many AYAs receiving HBHPC to become engaged in their own health care, and in some cases, prepare for transition to adult medicine [21–23].

Domain 3: psychological and psychiatric aspects of care

AYAs acknowledged expressing a range of emotions, though also a reluctance to engage in a discussion about those emotions with the study interviewer. Similar reluctance has been noted clinically [24]. While likely due to a lack of a relationship, this reticence may also be present in clinical care. Providers accustomed to frank and open discussions with patients about their feelings may need to invite AYAs to disclose feelings and to be patient until the relationship is perceived as emotionally safe to the AYA. In addition to clinical care, these patient-provider relationships often provide a social connection directly during visits and indirectly through encouragement to engage with others in their community. AYAs were specifically prompted during the study interviews to share whether they had felt sad, mad, scared, or lonely. While some AYAs acknowledged they had felt these emotions, many denied feeling them, and none discussed additional emotions. Since the research team had a short-term, limited time with the AYAs and did not have an established relationship of earned trust, it is probable that the AYAs experienced more emotions than they spoke to during the study interview.

Domain 4: social aspects of care

Themes and the AYA quotes that supported them in this domain seemed relevant to and even intersecting with other domains. AYAs’ social needs may be addressed through providing mental health care and other care forms delivered compassionately by providers. That the AYAs appreciated the role of ancillary services in providing social aspects of care through medical play and therapeutic activities was evident in their responses. The broad range of activities described by AYAs reinforces the benefit of an interdisciplinary care team and the important role of non-pharmacological interventions in HBHPC care. The positive therapeutic engagement of working with nurses, child life specialists, and expressive therapists, AYAs take part in medical play, crafts, expressive therapies such as music, and authoring stories. Social aspects of care provided opportunities to interact with AYAs as people rather than someone with a serious condition. Teams should also recognize issues related to the emergent sexuality of AYAs. Mental health providers and others may explore, for example, grief related to the difficulty or lack of intimate relationships among older AYAs. These desires and experiences of AYAs have been documented by others in their discussions with adolescents and young adults experiencing life-threatening illnesses [25, 26].

Domain 5: religious, spiritual, and existential aspects of care

A third of AYAs in this study conveyed their belief that spirituality should be incorporated into HBHPC. However, more than half of the AYAs stated that neither they nor the home-based provider initiated a conversation about existential aspects of life and care. The reported lack of apparent engagement by providers on this topic is problematic as the NCP guidelines call for all team members to be able to provide generalist spirituality care and to have resources for the provision of dedicated specialist spiritual care [1, 27]. Referral for telehealth contact with a pediatric hospital-based spiritual care provider is a means to offer this when a team does not have a designated spiritual care provider. Certainly, the AYAs lack of reported engagement may be due to other factors, such as incomplete recall, provider belief that this aspect of care is not valued by AYAs, providers’ personal discomfort with the topic, and/or low prioritizing of the topic due to demands on time. Nonetheless, study data show that care in this domain is salient to at least some AYAs and appears under-addressed.

Domain 6: cultural aspects of care

Responses in this domain reflect AYAs’ desire (and developmental need) for individuation [28]. AYAs discussed culture in terms of being met “where they are” rather than in terms of nationality, rituals, religious, and similar concepts. Pediatric HBHPC providers may be challenged to present diagnostic, prognostic, or therapeutic information and/or engagement in ways appropriate to an AYA’s cognitive and developmental abilities, some of which may change over the course of an illness. This challenge may be mitigated through team education, and inclusion of interdisciplinary team members whose expertise involves discussing complex topics in developmentally appropriate ways. Services primarily serving adult patients may benefit from consultation or collaboration with local pediatric providers to provide this aspect of care.

Domain 7: care of the patient at the end of life

AYAs in this study engaged in, even initiated, discussions of their end-of-life preferences; this is consistent with work by Lyons and colleagues, although they provided a structured intervention for such conversations [29–32]. Our data and Lyons’ findings show that the emotional challenge of such conversations require providers to be thoughtful about the timing, duration, and supportive aftercare regarding these discussions.

Domain 9: continuity and coordination of care

The highest number of AYAs responded to this domain regarding their desire for consistency of same or multiple providers. The diversity of findings in this domain suggest providers ask about preferences for seeing one consistent versus multiple providers over time if teams are able to accommodate the AYAs’ preference. Underlying the responses in this study was the importance of relationships to AYAs, specifically feeling cared about by the home-based providers. Whether or not teams have the resources to meet AYAs’ desire for one or multiple providers, taking steps to get to know the AYAs and their preferences will help build a trusting relationship as demonstrated in Domain 11. Grayson and colleagues’ study of young adults whose parents died in hospice while they were adolescents showed the need for a identified hospice team member (ideally one assigned) to communicate with the adolescent in the family [33].

Domain 11: compassionate care

The AYA-provider relationship is the foundation of a trusting and honest care relationship. AYAs rely on close relationships with their HBHPC teams to discuss difficult topics. Since many AYAs enrolled in hospice and/or palliative care have physical restrictions, contact with HPHPC teams may represent some of the closest physical, emotional, and social contact that AYAs have apart from their family members. As noted in this domain and others, compassionate care for AYAs is primarily perceived by AYAs as about meeting their psychological needs through developing supportive, trusting relationships and being taken seriously. The two themes in this domain conveyed the AYAs interest in having information shared with them that helps them to understand their condition as part of compassionate care.

Crosscutting themes

To be consistent with similar work with providers and caregivers, the presentation of results was structured using the NCP domains and the additional pediatric domains previously described [1–4]. However, it is important to note that some themes cut across more than one domain. One such topic, arising in Domains 3, 9, and 11 is that home-based care delivery is itself an intervention that reduces the social isolation frequently imposed by significant medical conditions. A second topic, arising in Domains 1, 4, and 11 is that quality HBHPC providers engage AYAs at their developmental level. This manifested in their desire to have their opinions elicited, having a voice or decision-making power in choices affecting the care of the body, to recognizing their emergent sexuality. A third mark of quality HBHPC was being treated as a unique individual. While this was the only theme emerging in Domain 6, it was also present in Domains 1 and 11. We support devoting attention to each domain as important and separate, making it possible to define and discuss them in teachable, manageable, role-specific areas to enable care delivery to be possible, to recognize expertise, and benchmark clinical care. At the same time, transdisciplinary team members may function as generalist providers across the physical, psychosocial, and spiritual health domains, and refer for specialist-level care when appropriate [27]. The holistic “whole” of a home-based team–when adequately staffed, well-trained, and available, provides care to address the breadth of AYAs’ needs. Domain-specific terminology is less important than the essence of the care that is delivered.

Clinical Implications and calls for action

Guidelines for hospice and palliative care should consider the needs of AYAs and their caregivers. AYAs often had difficulty expressing what they thought hospice or palliative care meant, and many had no role in enrollment in these services. Despite this apparent lack of understanding and differences in AYA age, diagnosis, location, care settings, or cognitive ability, a common thread across all domains and AYAs was their desire to be understood by their HBHPC providers. They appreciated and desired time to share their stories and needs with providers, who they generally perceived as listening attentively. When trusting relationships have been developed, AYAs feel more comfortable having difficult conversations about their emotions, goals, spirituality, and fears, therefore empowering AYAs to take a larger role in their own healthcare. According to AYAs, providers earned trust through meeting AYAs where they were (both physically and emotionally), getting to know their interests and hobbies, engaging in activities with an interactive component, and being willing to bring levity and humor into conversations. These traits are not new to the fields of hospice and palliative care, which has long emphasized the importance of relational, person-centered care [34]. Consistent with Sisk and Baker’s work on trust in medical relationships, AYA participants’ recognition and articulation of the importance of their relationship with HBHPC providers illustrates the necessity of warm, trusting interactions between this population and those who care for them.

Additionally, AYAs regularly expressed concern for the wellbeing of their caregivers and siblings. While medical care tends to focus on the patient, these AYAs desired support for the most important people in their lives. Support may include additional child life services and therapeutic play for siblings to process their emotions, general or grief counseling for caregivers, social work interventions to assist with resource referral and allocation, and chaplain presence. While some HBHPC teams are equipped with these interdisciplinary team members, others may lack the resources or personnel for holistic family support. This study reiterates the imperative for a full complement of interdisciplinary HBHPC providers to consider the entire family while caring for the AYA.

One significant gap in AYAs’ experience with HBHPC was discussion about their spirituality. Though some adolescents acknowledged how important faith was to them, they rarely recalled meeting with a chaplain or discussing spirituality with another provider. While they might simply not remember their interactions, it is concerning that so few AYAs felt they had the space to discuss such an important aspect of their care. This finding suggests that, in addition to including a chaplain on HBHPC teams when resources are available, all interdisciplinary providers should participate in training to assess spiritual needs and provide basic spiritual support. When topics exceed a provider’s expertise or comfort zone, referral to specialist spiritual care is indicated.

This study has the following limitations. The sample was composed of AYAs with a verbal ability to participate, a slight majority of females, persons who are White, and AYAs with hematologic/oncologic diagnoses. This study included a broad range of verbal abilities and therefore three SSIG versions were used; caregivers were permitted in some cases to interpret their AYAs’ responses. These factors may have affected the study results. AYAs receiving HBHPC who have no verbal abilities and/or are cognitively limited were not included due to the limitations in conducting an interview. The interviewers found that, even with developmentally appropriate and cognitively accessible interview adaptations, many interviews resulted in few quotes and limited understanding of interview questions. For example, some participants’ answers primarily consisted of yes/no responses to both closed and open-ended questions. While their voices are included in the table via frequencies, they were not able to provide quotes. Instead, a smaller subset of participants (who were typically older and with a higher level of cognition) account for the majority of quotes, though we hope they are generally representative of the less verbal AYAs’ experiences. Some domains had more questions than others, which may skew the number of themes in each domain. All of these factors limit the generalizability of the findings. Nevertheless, important conclusions can be drawn. This study fills a gap by including AYAs’ voices about quality HBHPC. Key clinical findings include prioritizing building trusting relationships directly with AYAs, empowering them to participate appropriately in their own care, and transition from pediatric hospice and palliative care to adult care, understanding that this may take time; providing support for siblings and caregivers as part of HBHPC services; and training all HBHPC providers in generalist spiritual care.

Abbreviations

AYA

Adolescent/young adult

COREQ

Consolidated REporting guidelines for Qualitative studies

EOL

End of life

HBHPC

Home-based hospice and/or palliative care

SSIG

Semi-structured interview guide

Author contributions

DG: Conceptualization, Methodology, Validation, Formal analysis, Investigation, Data Curation, Writing-Original Draft, Writing-Review & Editing, Visualization, Project administration, Funding acquisition. CC: Formal analysis, Writing-Original Draft, Writing-Review & Editing, Visualization. JCE: Formal analysis, Writing-Original Draft, Writing-Review & Editing, Visualization. JB: Writing-Review & Editing SF: Conceptualization, Methodology, Resources, Writing-Review & Editing, Supervision. LH: Conceptualization, Methodology, Resources, Writing-Review & Editing, Supervision. JAJ: Conceptualization, Methodology, Resources, Writing-Review & Editing, Supervision. RT: Conceptualization, Methodology, Resources, Writing-Review & Editing, Supervision. PH: Conceptualization, Methodology, Validation, Formal Analysis Writing-Review & Editing, Visualization.

Funding

This study was partially funded by NIH/NINR R01020608.

Data availability

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

Declarations

Ethics approval and consent to participate

This study was approved by the institutional review board (IRB) at Akron Children’s Hospital as IRB# 2022-154-ACH; all additional sites’ institutional review boards ceded reliance. All participants completed informed consent (persons under 18 years old provided their assent, and consent was obtained from their legal guardian). The study and all procedures and data was carried out in accordance with the Helsinki Declaration.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.