Community-Based Pediatric Palliative Care: How Services Support Children's and Families' Quality of Life

Abstract

Background:

The Massachusetts Department of Public Health's Pediatric Palliative Care Network (PPCN) provides Community-Based Pediatric Palliative Care (CBPPC) to children with life-limiting conditions and their families. CBPPC services aim to improve children and families' quality of life (QOL).

Objectives:

To identify perceived domains of QOL important for children and families and to understand whether and how CBPPC supports QOL.

Design:

A community-based participatory research framework was used to develop recruitment and data collection materials for eight focus groups and seven interviews. Collected data were transcribed and analyzed with an inductive approach.

Setting/Subjects:

A convenience sample of 33 PPCN caregivers, 20 providers, and seven key informants, including policymakers, community organizations, and hospital-based clinicians, were interviewed virtually in the United States.

Measurements:

Perceived QOL domains for children and families, respectively, and perceived impact of CBPPC services on QOL.

Results:

Reported QOL domains described as important for children were socialization/community integration and accessibility; expression/play; and physical wellness. Control or autonomy, psycho-emotional wellness, and self-care were identified as important for families. Clinical services were described as “integral to mental health” through offered spiritual support; advocacy in the community; and education. PPCN's integrative services were noted as distractions from pain and helped improve communication and bonding. Sibling support and bereavement care were also mentioned as impactful on QOL.

Conclusions:

Family-centered CBPPC was described as supportive of children's and families' QOL. Future studies should consider using population-based QOL measures, leveraging the QOL domains identified through this analysis and other outcome measures in a cost-effectiveness analysis.

Introduction

About 50,000 children die from life-threatening conditions each year in the United States, and less than one percent receive needed hospice services.¹ The physical, emotional, logistical, and spiritual needs of impacted children and their families are substantial.

The Pediatric Palliative Care Network (PPCN) program was signed into law in April 2006 to be administered by the Massachusetts Department of Public Health (MDPH). PPCN was funded exclusively by a state appropriation to address these substantial needs. PPCN offers Community-Based Pediatric Palliative Care (CBPPC) for children with life-limiting conditions and their families at no cost to the family. Any child 18 years and younger, and up to age 22 as of July 2022, living in Massachusetts with a qualifying medical condition is eligible.

PPCN aims to achieve the highest quality of life (QOL) for children and their families by addressing their values, needs, and preferences through a range of consultative and direct palliative services. PPCN services include, but are not limited to, integrative therapies (e.g., music, massage), clinical services (e.g., nursing, child life, pain and symptom management), case management, sibling care, and bereavement services. Since its successful implementation, more than 1500 MA children have been enrolled in PPCN.² There are an estimated 10,000 children with medical complexities living in MA, of whom a subset has life-limiting conditions, highlighting the need for continued expansion of the program to address the unmet needs of this population.^3,4 Different from hospice care, which focuses on a person's final months of life, PPCN is available to eligible children, and their families, at any time.

While both hospice and PPCN provide clinical care, PPCN also provides extensive case management alongside other treatments, therapies, and supports and helps to bridge the gaps of adequately accessing hospice care.

The Centers for Disease Control and Prevention defines health-related QOL at the individual-level as “physical and mental health perceptions (e.g., energy level, mood) and their correlates—including health risks and conditions, functional status, social support, and socioeconomic status.”⁵ Reported QOL domains on end-of-life care for children with cancer include parents spending time with their children, preparation for events surrounding death, and diminishing feelings of abandonment.⁶ However, published research on critical QOL domains for children with life-limiting conditions and their families is sparse. Methodologically, no validated pediatric QOL measures are available for CBPPC^7,8 and the inclusion of children has not been systematically integrated in reporting outcomes.⁹

Reports on whether and especially how CBPPC improves QOL are limited. One review suggests that pediatric palliative care (PPC) improves a child's emotional well-being and parental perception of preparation for the child's end of life.¹⁰ Additional studies with analyzed survey data found associations of improved QOL for children and/or caregivers of children enrolled in CBPPC.^11–13 Yet, evidence regarding the impact of PPC on severely ill children and their families “is scarce and provides a low level of certainty,” and there is a need for “greater consensus regarding meaningful and measurable outcomes.”¹⁴

The present analysis used qualitative data from a broad set of community stakeholders to investigate whether and how CBPPC is aligned with or supports the QOL of the child and family. It also attempted to assess the strengths of the relationship between CBPPC and QOL. Inclusion of stakeholders from historically underrepresented racial and ethnic communities was emphasized to ensure a comprehensive understanding of individual needs in accessing palliative care.¹⁵

Materials and Methods

As a program evaluation, this project received a nonhuman subject review determination from the University of Massachusetts Chan Medical School's Institutional Review Board.

Research framework

We used a community-based participatory research (CBPR) framework, emphasizing community partnerships and engagement among underrepresented populations with a goal of establishing health equity.^16,17 Guided by CBPR and a recognition of the unique value each stakeholder contributes to community health, our focus group data collection centered on PPCN families, with supplemental data captured from other stakeholders. An Evaluation Advisory Committee (eight providers and six parents/caregivers) was convened to review recruitment materials, interview guides, and analysis results, and to serve as “cultural brokers” between our research team and families.^18,19

Recruitment and sampling

Recruitment materials (e.g., project flyers, registration forms) were distributed to all PPCN families through providers, community-based and statewide partner organizations, and family members. Special efforts were made to reach non-English-speaking communities, particularly Spanish- and Arabic-speaking families. A diverse sample of parents or caregivers (caregivers hereafter) were chosen with respect to race/ethnicity, region, family size, and language. A variety of providers (e.g., child life specialists, nurses, volunteers) were selected from multiple program sites with varying years of professional experience. Additional key informants from organizations providing similar or related services to PPCN (e.g., state Medicaid agency, hospital-based clinicians' knowledgeable of PPC, nonprofit organizations) were interviewed.

Data collection

The semistructured focus groups and interviews were conducted virtually on Zoom from February to April of 2021. Each focus group lasted about 1.5 hours with up to 10 participants each. One family focus group was conducted with consecutive Spanish interpretation provided by an interpreter and advisory committee member. One interview was conducted with consecutive Arabic interpretation provided by an interpreter. Providers were interviewed separately from caregivers, and so, participants could openly share their opinions. Interviewers were trained and participated in a mock focus group. Interview guides included questions to first understand participants' opinions of important QOL domains for children with life-limiting conditions and their families, and then whether and how CBPPC services impact children and families' QOL. Interview questions were pilot tested with both providers and caregivers before being finalized.

A data collection fact sheet stating the purpose, privacy protection, and consent to audio-record these sessions was distributed and read aloud before the focus groups and interviews, and participants provided informed consent verbally. The audio-recording was transcribed verbatim.

Data analyses

A codebook was developed in tandem with data collection, applying frequently mentioned phrases from field notes and debriefing discussions. A mixed-methods analytical software tool Dedoose²⁰ was used to analyze the transcripts with an inductive methodology, that is, develop emerging themes and findings through systematic reviews of the transcripts.²¹ Two analysts reviewed the same sets of transcripts based on the codebook with continuous refinements made as more data were reviewed. Each analyst compared and standardized the other's coding logic and rules, until reaching acceptable inter-rater reliability (with Cohen's Kappa value of 0.83).^22,23 The number of coded excerpts were used as indicators of the importance of each QOL domain relevant to children and families. Analysts also distinguished between whether information shared pertained to the child's QOL, to the caregiver and/or sibling's (family's) QOL, or both. Draft findings were validated through public listening sessions with PPCN families with simultaneous interpretation.

Results

In total, eight focus groups and seven interviews were conducted from February through May of 2021. Focus groups and interviews continued until the research team determined to have reached data saturation.

Characteristics of focus group participants and interviewees

Thirty-three PPCN caregivers, 20 PPCN providers, and seven key informants, including two employees from a state Medicaid agency outside PPCN, three community organizations, and two PPC clinicians, were interviewed. Most caregivers were 31–50 years old (77%) and female (83%). Race/ethnicity choices were not mutually exclusive (i.e., “check all that apply”). Nearly one-half (40%) of the caregivers self-reported as only White and 46% selected from the other racial/ethnic groups (13% Black, 10% Asian, and 23% Hispanic or Latino). More than one-third (47%) of caregivers had two or more children younger than 18 years (Table 1). Providers from seven of the eight statewide PPCN program sites participated. Over one-half (55%) of the providers had been with PPCN for three to five years; more than one third provided case management or social work and counseling services; 21% provided nursing or pain and symptom management; and 16% provided spiritual care and bereavement services (Table 2).

Table 1.

Characteristics of Family Focus Group Members/Interviewees (n = 30)

Characteristics	Responded (n)	Interviewed (%)
Region of service receipt^a
Western	15	50
Eastern	11	37
Central	4	13
Decline to answer or unsure	2	7
Age
<30 years old	4	13
31–40 years old	12	40
41–50 years old	11	37
51–64 years old	3	10
Gender
Female	25	83
Male	4	13
Decline to answer	1	3
Race/ethnicity^a
Asian or Asian Indian	3	10
Black or African American	4	13
Hispanic or Latino	7	23
Native Hawaiian or other Pacific Islander	1	3
White	15	50
Decline to answer	1	3
Number of children in the household younger than 18 years
1	9	30
2	11	37
>3	3	10
None^b	7	23

Notes: Three family members who did not register and do not have profiles available are therefore excluded from this table.

The response categories for this item are not mutually exclusive, so the total number of responses could be more than 30. The percentage indicates the percentage of interviewers in each response category based on the denominator of 30, which can exceed 100%.

Some families' children had reached the PPCN age eligibility threshold of 19 and/or passed away.

Table 2.

Characteristics of Provider Focus Group Members

Characteristics	Responded (n)	Interviewed (%)
Identity
Frontline service provider (e.g., music therapist, respite care provider)	13	65
PPCN program manager or provider contracted with DPH directly^a	7	35
Region
Western	5	25
Eastern	10	50
Central	5	25
Services^a
Bereavement services	6	30
Care or case management	9	45
Child life specialist services	5	25
Complementary therapy services	9	45
Nursing services	6	30
Pain and symptom management	7	35
Respite services	3	15
Social services and counseling	8	40
Spiritual care	4	20
Volunteer support services	4	20
Other	2	10
Years providing PPCN services
1–2 years	4	20
3–5 years	11	55
>6 years and above	5	25

One provider may deliver more than one service. The response categories for this item are not mutually exclusive, so the total number of responses could be more than 20. The percentage indicates the percentage of interviewers in each response category based on the denominator of 20, which can exceed 100%.

Commonly reported QOL domains

The six most prevalent QOL domains caregivers defined were indicated by the frequency of excerpts or quotes coded solely from the focus group responses. The six domains mentioned as most critical for children and families were socialization/community integration and accessibility, expression/play, physical wellness, psycho-emotional wellness, self-care, and control or autonomy (Table 3). Other relevant domains mentioned included normalcy and family bonding.

Table 3.

Definition of Quality-of-Life Domains from Analyses

Domain	Definition
Control or autonomy	Sense of stability with care coordination and decision making; choice of intervention and services; independence
Expression/play	Ability to express oneself; communication and connection from engaging in creative and fun activities
Family bonding	Increased connection with family (caregiver and child, siblings and child, other relatives and immediate family, etc.)
Normalcy	Feelings of being understood, accepted, and heard; a sense of routine; people's understanding of the family and child; not missing life or community events
Physical wellness and mobility	Pain management; feelings of comfort, safety, and relaxation; physical stability, mobility, and anything related to physical health
Psycho-emotional wellness	Emotional and spiritual well-being; recovery from medical trauma; feelings of joy; celebration
Self-care	Time dedicated to alleviating stress/emotional hardships to preserve one's health and strength (e.g., going for a walk, getting enough sleep, going on vacation)
Socialization/community integration	Engagement in social activities with others; participation in support groups; access to the community

For children, the most important QOL domains as reported by caregivers and providers were socialization/community integration and accessibility, followed by expression/play and physical wellness. For families, the top QOL domains noted were control or autonomy, psycho-emotional wellness, and self-care.

Although each QOL domain represented a distinct concept, some were related to services and processes and others were outcome-oriented, with the former impacting the latter. For example, better self-care, a process domain, was linked with increased feelings of control and autonomy among family members, an outcome domain. Caregivers' ability to practice self-care and have a sense of control over their lives influences their children's QOL. Socialization and expression/play contributed to the psycho-emotional wellness of children.

PPCN service alignment with reported QOL domains

Overall, nearly all caregivers indicated that the PPCN program services supported their child's and family's QOL. Providers shared similar views based on their interactions with children and families. The frequently mentioned PPCN service components (Table 4) were as follows: integrative therapies; clinical or medical services; sibling/caregiver support; provider–family partnerships; and care coordination supporting service access and utilization within and outside of the PPCN.

Table 4.

Definition of Pediatric Palliative Care Network Services/Service Delivery Components

Services/service delivery components	Definition
Services
Clinical services	Medical services delivered by nurses, social workers, counselors, case managers, child life specialists, chaplains, among other providers
Integrative therapies	Healing services delivered by music, art, and massage therapists among other providers
Service delivery components
Care coordination	Assistance with finding providers; case management; advocacy for and arrangement of non-PPCN services; understanding providers' roles and responsibilities
Provider–family partnership	Communication and relationship between family members and providers; level of empathy, trustworthiness, and knowledge from staff
Sibling/caregiver support	Services delivered to the siblings, caregivers, or other family members of the child with a life-limiting condition

Table 5 includes select quotes from PPCN caregivers to elaborate on the relationship between PPCN services and QOL. Notably, each PPCN service was tied to multiple QOL domains, with some services more aligned with certain QOL domains than others.

Table 5.

Quotes from Pediatric Palliative Care Network Caregivers

PPCN services	QOL domains	Quotes from PPCN caregivers
Clinical services	Physical wellness, control or autonomy	“[PPCN nurse has] always been there to kinda help me get things, you know, with being a single mom, being able to get things covered through insurance that [the child] needs to, essentially, live every day, that I never knew could even get covered, you know, through health insurance. So she's been a great support system to me.”
Clinical services	Expression/play normalcy, socialization/community integration	“A lot of times people who are running the activity are really uncomfortable about the fact that [the child] can't hold something on his own. He needs hand-over-hand. And they kind of make a big deal about making him included… but having the child life specialist come out here and do activities with [the child], it's like she doesn't hesitate. She's comfortable, she grabs his hand, she's like, ‘Alright, we're doing this today. We're going to do messy media, and we're going to squish this stuff around,’ and [the child] gets the biggest smile on his face because he realizes nobody's making a big deal about what's going on and making a big deal about making him feel included… that's a fantastic thing.”
Clinical services	Physical wellness	“We could try to keep [the child] stable, we could try to keep him comfortable… one night he went into status [seizure] at the house and I called the on-care nurse practitioner at 4:30 in the morning… they were here—they came in 30 minutes with rescue meds… for the entire family, the medical support allowed us to keep him home.”
Integrative therapies	Expression/play physical wellness	“Also, the art therapy. So that has helped her as well with the pain… it was another creative outlet for her to start developing these massive pieces with the canvasses, and now she even sells them to friends and family, so there have been so many different therapies that have just been awesome.”
Integrative therapies	Physical wellness	“The massage therapist had provided services not just for her child but also for herself as she has fibromyalgia. And she says what seems to be the most impactful is the music therapy… the local school system didn't recognize it as an essential therapeutic outlet… so she's extremely grateful for the music therapy offered through Pedi-Pal because it has extremely helped significantly.” (Interpreted from Spanish to English)
Integrative therapies	Expression/play socialization/community integration physical wellness	“She developed such a love for music through the therapy, and it actually helped with her pain treatment, because one of the techniques that we used first before medicine is distraction. So before just going to something like an iPad, well let's play music, so that was very key.”
Care coordination	Control or autonomy	“[PPCN] helped find doctors for us… the nurse helped me out with insurance… the nurse helped me find other resources and you know, finding diapers, food, pump bags—my son has a G-Tube—syringes, all kinds of stuff, and now we get it from two or three different companies where we were just getting it from one.”
Care coordination	Control or autonomy	“Being enrolled before, she said that she was really unorganized, and with the program, the providers are on her, they are constantly following up with her, whether it's regarding reminders for her son's appointments, as they know that she is, can be often forgetful. They also follow up with her, asking if her child or her family, and/or herself, if they need anything. She really feels that she has way more support than before.” (Interpreted from Spanish to English)
Care coordination	Control or autonomy, physical wellness	“When he was on hospice…he had so many different providers, but his main providers, we were having a problem like with one or two of them that were not understanding of some of his circumstances. And [PPCN] were able to kind of like insert themselves and help the other providers kind of get the ball rolling and nail things down and take that off my plate so I didn't have to keep hammering a door that wasn't going to open.”
Provider–family relationship	Control/autonomy, psycho-emotional wellness, socialization/community integration	“I'm gonna say the fact that I feel like I'm included, and I have an outlet with other parents, and it has empowered me as an advocate and as a mother, and how I see my kids interacting, I would have to say socially, psychologically, exactly what is important to me as far as quality of life goes, I feel like PPCN does a good job delivering that.”
Provider–family relationship	Psycho-emotional wellness	“I can't say it was anyone specific, I think it's just been a fantastic team and you know, when we've shown up to places that you know, when we're new and not feeling comfortable, they're the first to come and greet you and make you feel comfortable…we've just appreciated everybody's support.”
Provider–family relationship	Socialization/community integration	“[The child life specialist] knows all my gossip, and all my juice, and all my good stuff, and you know, she'll remember to check in on me…while she's fully involved in all aspects of both of my children's lives.”
Sibling/caregiver support	Family bonding, socialization/community integration	“…all the team from the [PPCN] program was a blessing for us because they don't take care just for the needs of my son, they also take care of my other daughter and son… now they have somebody to come and play with them and talk with them and the social workers also come, and sometimes talk with my daughter.”
Sibling/caregiver support	Control/autonomy, psycho-emotional wellness, self-care	“I used to have a volunteer through Pedi-Pals, and she would come to help out one hour a week. And so, that would give me a chance to take a shower or run to the grocery store and buy something or just go in my garden and just sit to be by myself for a while… my other two kids would feel it, and you know, and that would flow down to my husband, and everybody would just be a lot more calm.”
Sibling/caregiver support	Family bonding, socialization/community integration	“They bring an activity to do with the child, and they incorporate the siblings, they are also teaching the siblings how to interact with the patient, and that's important in our family.”

QOL, quality of life.

Integrative therapies

Integrative therapies appeared to align with the child's QOL more than with the family's QOL. Participants from nearly every focus group described the importance of children being able to express themselves and to engage in creative activities. One caregiver shared that their son “…doesn't really communicate, except through music…he loves music, and he definitely knows what he likes, and what he doesn't like, and he communicates to us through emotions through his eye gazes.”

Other participants shared similar benefits from integrative therapies and reiterated the value in services that allowed the child to be as active as possible, to have set expectations, to never feel underestimated, and to “still allow that child to be a kid.” Along with offering opportunities for increased socialization and improved speech, music and art therapies were depicted as an outlet for increasing the child and family's understanding of medical procedures. Caregivers reported that music therapy helped reinforce family bonding. Massage therapy was noted as important for promoting relaxation and comfort, as well as instilling a sense of control for the child over their bodies. One provider explained, “so many of our kids become very angry with providers for doing procedures on them, and we see a lot more trauma with kids who have a lot of, unexplained procedures.”

Another provider explained that, “with massage, it's healthy touch, it's their choice… it's giving the child control.” These services were described as helping the child better manage their pain because they served as a distraction. One caregiver indicated, “I would say that massage therapy brought [their child] comfort and rest, and peace… it was an hour at a time, but he would lay down, and be so at peace, and sometimes it was the only rest he would get all day.” Massage therapies also helped relieve caregivers' stress and enhanced their psycho-emotional well-being and physical wellness.

Clinical services

Clinical services were described as essential to both child and family's QOL and related to all six QOL domains. Again, participants acknowledged that children might have trauma from invasive medical procedures and treatments—one caregiver shared that the child has post-traumatic stress disorder from medical interventions, so processing emotional hardship was described as critical to the child's psycho-emotional wellness. Another caregiver explained “[PPCN's] support leading up to procedures and exams and appointments was great… it helps us to kind of recover and get into a better place mentally.” These efforts were recognized across stakeholder groups, particularly with child life specialists implementing activities that strengthened family connections, educated the family on the child's condition, and allowed for play and creativity. Other clinical staff members (e.g., nurses and social workers) were described as essential for their advocacy role, for helping to reduce hospitalizations, and for connecting families to the needed resources.

One caregiver shared, “I would put medical support under quality of life… if [the child] was sick, [PPCN nurses] would bring the meds and the treatment to him… it also allowed me peace of mind, that I knew they were there.” Spiritual and social work services were noted as invaluable by PPCN families and described as “integral to mental health” by caregivers.

Sibling/caregiver support

As a unique PPCN service to the whole family, sibling/caregiver support was described as impactful especially for the families' QOL. Focus group participants recognized the challenges for caregivers to focus on their own health and wellness, and all stakeholders emphasized the influence of PPCN on socializing and building meaningful relationships for both children and families. Caregivers mentioned how the child and sibling(s) had more opportunities for interaction and bonding. All stakeholder groups acknowledged that siblings need special attention and can feel overlooked because of the attention needed to care for a child with a life-limiting condition.

One parent noted that sibling support is “one of the most instrumental things” they have received from PPCN—that it has “encouraged [their] younger son to play more with his older brother, teaching him more about his diagnosis.” Staff who provided respite or who volunteered with PPCN were described as helpful for allowing the caregivers an opportunity to care for themselves.

Provider–family partnership

This component was described more so for families' QOL than for children's QOL. Some caregivers described providers as “part of the family” with trust built between them. Caregivers and key informants described providers as nonjudgmental and available for difficult conversations: offering unique expertise as well as bereavement and end-of-life care through assembling individualized care teams. One caregiver explained, “there aren't too many people to [talk about end of life] with; that you feel comfortable with in the comfort of your own home, on your own time, when you're ready.” Both caregivers and providers noted the challenges of retaining relationships with friends and extended families who did not fully understand their needs, and feelings of isolation for the child and family members.

However, many caregivers described having found a sense of community with providers and other PPCN families. Providers also recognized the value in their work, one participant sharing, “I really am honored that so many families really almost crave our visits.”

Care coordination

Care coordination pertained more to the families' QOL than children's QOL. Caregivers indicated being overwhelmed with the number of service providers in addition to other care responsibilities before PPCN care coordination was available. Case managers and coordinators were reported to assume critical roles, especially for control or autonomy, an aspect mentioned in every focus group and interview. One key informant explained that the PPCN collaborated with outside organizations to provide financial support and increase families' access to integrative therapies. PPCN providers were noted to not only help with care navigation and resource referral, but also with advocacy and communication with hospital staff. Participants were confident that PPCN providers helped save families' time by referring them to needed services.

One caregiver shared “what took [them] three years on [their] own to connect to all the services that [they] needed to connect to could have been handled in just a few weeks by having a Pedi-Pal team…” Many caregivers reported feeling more organized with their child's provider network. They also reiterated the importance of more support for care transitions between homes and institutions, and across agencies and providers.

Discussion

Main findings

Our results clearly indicate how CBPPC services support caregivers' perceived QOL to support the whole family. The goals of PPCN are to provide a holistic and family-centered approach in a natural environment (i.e., the home) to care for children and our analysis confirms that this program supports reported QOL domains. All PPCN services were overwhelmingly reported as critical for children and families. Children with life-limiting conditions require a level of care and coordination that few families are equipped to handle by themselves. The demonstrated relationship between QOL and PPCN services reinforce the importance of PPCN and its emphasis on the family unit. In addition to the overwhelmingly positive feedback about PPCN services, many participants noted other factors (e.g., social determinants, program eligibility) potentially affecting the child's and family's QOL, underpinning gaps or needs for more types of program support, often entailing cross-agency collaborations.

Strengths and limitations

Our analysis was able to identify and highlight the most critical domains of QOL for children and families. The QOL domains identified can be used for developing validated instruments of QOL for the CBPPC program. It further demonstrated whether and how each explored PPCN service component aligned with QOL domains for children and their support network.

This evaluation does have limitations. First, any qualitative analysis is limited by the number of participants and subjective opinions, both of which impact the generalizability of findings. The findings were grounded across a diverse sample of focus group and interview participants. Although successful in convening a Spanish-speaking focus group, conducting an Arabic-speaking interview and ensuring inclusive recruitment and selection of focus group members, we still did not have a large enough sample size to draw findings about subgroups (e.g., by race or gender). Second, caregivers are often charged with assessing unobservable, latent experiences of children when they are fragile and cannot self-report. Involvement of children in QOL assessment is recommended.²⁴ Self-reported data add to the potential for information bias.

Third, a reliable and validated tool for CBPPC is not available for population-based and longitudinal analysis. Future evaluations should prioritize the use of population-based measures based on validated assessment tools. Fourth, future studies may consider the representation of non-PPCN families as a comparison group.

Contribution to existing literature

This evaluation raised a keen awareness of how PPCN services combine to address key QOL factors, complement each other, provide comprehensive care for enrolled children and families, and meaningfully link them to their communities.

Conclusion

Multifaceted PPCN program services, uniquely delivered in the home, are highly valued and essential to QOL. Family-centered and comprehensive service delivery is conducive toward addressing the whole family's unique and complex needs. The complex conditions and needs of children with life-limiting illnesses demand a comprehensive service approach by any CBPPC program.

Provided that one type of PPCN service can influence multiple domains of QOL, program development should prioritize services aligned with those domains. Also, future studies should consider using population-based QOL measures and leverage the QOL domains identified through this analysis along with objective outcome measures (e.g., clinical service utilization) in a cost-effectiveness analysis to further inform the value of CBPPC.

Clinical Palliative Care Program

Program structure

The MDPH contracts with hospice organizations throughout the state to provide CBPPC services through the PPCN. This state-funded program serves children from birth up to age 22 with life-limiting illness and their families residing in Massachusetts. Families who receive a life-limiting diagnosis during pregnancy are also eligible for perinatal palliative care. The program aims to address the unmet physical, emotional, social, and spiritual needs of both the child and family. Services are provided at no cost to the family and include ongoing nurse assessment, case management, social work, bereavement support, child life services, spiritual care, volunteer services, and a variety of integrative therapies such as music, massage, and art therapy, all of which are focused on symptom management and QOL goals.

Team staffing

The PPCN programs currently sustain 58.6 full-time employee (FTE) of clinical staff, providing care in the community. This includes the following: 14.5 FTE nurses, 12.25 FTE social workers, 11.6 FTE child life specialists, 11 FTE music therapists, 3.25 FTE spiritual care providers, and 6 FTE integrative therapists (massage, art, movement, and pet therapy). In addition, another 11.5 FTE management and support staff are employed to support this program. As per the contract, the palliative care teams and hospice providers are required to have PPC and pediatric end-of-life training.

Program availability

Services are delivered in the home or in the community where the child lives. The seven PPCN programs offer appointments between the hours of 8 am–6 pm Monday through Friday, with exceptions made based on the needs of the patient and family. On-call consultation is available to families through the support of the hospice agency that houses their PPCN program. Referrals to contracted PPCN programs may be made by the child's medical team, DPH-funded programs, social services, and community-based organizations. Families may also self-refer.

Patient volume and interactions

Since 2007, more than 1500 children have been enrolled into the program. Currently, the PPCN carries an average daily census of 641 children who receive an average of three home visits per month per child. There are more than 100 on the waitlist. Nursing and social work services are required quarterly; however, most families utilize these services monthly. Each clinician on the care team spends an average of two contact hours—this includes community visit, case management, and travel time—with each family on their caseload monthly. The average length of stay in the program is 31 months; however, 26% of currently active children have been enrolled in the program for more than five years.

Footnotes

Acknowledgments

The authors thank the PPCN Evaluation Advisory Committee members who reviewed the recruitment materials and interview guides, assisted with disseminating focus group opportunities to potential focus group participants, and served as cultural brokers during the focus groups. The authors also thank Lucy's Love Bus, Courageous Parents Network, and the Federation for Children with Special Needs for disseminating the focus group recruitment flyers. In addition, the authors thank all of those who participated in focus groups and interviews to share valuable yet very personal opinions.

Our research findings were also presented at AcademyHealth's Annual Research Meeting held in Washington, DC, on June 6, 2022, and at the American Public Health Association's Annual Meeting held in Boston, Massachusetts, on November 8th, 2022.

Authors' Contributions

Y.W. conceptualized and designed the study, collected the data, conducted formal analysis, wrote the initial article, reviewed and revised the article, and approved the version to be published. E.F. collected data, conducted formal analysis, wrote the initial article, reviewed and revised the article, and approved the version to be published. S.B. conceptualized and designed the study, collected the data, wrote the initial article, reviewed and revised the article, and approved the version to be published. J.S. and A.J. reviewed interview guides, collected the data, reviewed and revised the article, and approved the version to be published. A.B., M.Y., E.G., and G.M. conceptualized the study, reviewed interview guides, helped recruit focus group members, reviewed and revised the article, and approved the version to be published. K.P. reviewed and revised the article and approved the version to be published. All authors approved the final article as submitted and agree to be accountable for all aspects of the work.

Funding Information

The evaluation was funded by Massachusetts Department of Public Health.

Author Disclosure Statement

No competing financial interests exist.

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