“There's Just No Way to Help,and They Did.” Parents Name Compassionate Care as a New Domain of Quality in Pediatric Home-Based Hospice and Palliative Care

Abstract

Background:

To design high-quality home-based hospice and palliative care (HBHPC) systems, it is imperative to understand the perspectives of parents whose children enroll in HBHPC programs.

Objective:

The goal of this project was to identify and define parent/caregiver-prioritized domains of family-centered care in HBHPC by performing semistructured interviews of parents/caregivers (“parents”) across Ohio whose children have received HBHPC. We hypothesized that the 10 provider-prioritized domains and their definitions, as identified in our previous research, would be modified and augmented by parents for application in the pediatric HBHPC setting.

Methods:

This was a qualitative study utilizing semistructured interviews of bereaved parents of children who were enrolled in a pediatric HBHPC program at the three sites from 2012 to 2016 and parents of children who were currently enrolled in these programs for at least a year.

Results:

Parent-prioritized thematic codes mapped to 9 of the 10 provider-prioritized domains of quality HBHPC; none mapped to the domain “Ethical and Legal Aspects of Care.” Although most of the provider-prioritized domains are pertinent to parents, parents defined these domains differently, deepening our understanding and perspective of quality within each domain. An 11th domain, Compassionate Care, was created and defined based on emergent themes.

Conclusions:

Parent/caregiver-prioritized domains of quality in pediatric HBHPC map closely to provider-prioritized domains, but parents define these domains differently. Parents also prioritize Compassionate Care as a new domain of quality in pediatric HBHPC. Measuring the quality of care provided in HBHPC programs through this broader perspective should enable the selection of measures which are truly patient- and family-centered.

Introduction

Despite the well-described suffering experienced by children as they die,^1–3 there are few studies in the field of pediatric hospice and palliative care (HPC) evaluating the quality of hospice care. Domains of quality HPC⁴ were designed specifically for adults, and do not meaningfully account for patient, parent, or pediatric HPC provider perspectives.^5,6 It is inappropriate to apply adult-centered domains and measures in pediatric hospice care for several reasons. Adults on hospice most commonly die from cancer, dementia, and heart failure; children more commonly die from congenital disorders or progressive neuromuscular conditions.⁷ Life-limiting conditions in children are unpredictable, which makes prognostication of life expectancy very difficult. As a result, children have significantly longer lengths of stay on hospice and are more likely to revoke hospice care at least once, but children who remain on hospice are more likely to die at home than adults.^7,8

Home-based hospice and palliative care (HBHPC) differs meaningfully from inpatient palliative care.⁵ The constitution of the interdisciplinary teams is different: home-based programs typically rely heavily on nurses and feature dedicated expressive therapies and pastoral care, whereas inpatient teams typically rely more heavily on physicians, social workers, and nurse practitioners.⁵ Children at home may be stable for years before they approach the end of life (EOL), while hospitalized children often have more acute medical, palliative, and/or EOL needs; plans of care developed longitudinally in the home versus acutely in the hospital reflect these contrasting circumstances.⁵

We previously completed two modified Delphi studies of pediatric HPC providers in the Ohio Pediatric Palliative Care and End-of-Life Network (OPPEN) to identify⁹ and define⁵ provider-prioritized domains of quality in pediatric HBHPC. The result of those studies was that the eight domains of quality HPC identified and defined by the National Consensus Project were validated for use in pediatric HBHPC, two new domains were identified (Bereavement Care and Continuity and Coordination of Care), and all domains were redefined.⁵ To design high-quality HBHPC systems, it is imperative to also understand the perspectives of parents whose children enroll in HBHPC programs. The goal of this project was to identify and define parent/caregiver-prioritized domains of family-centered care in HBHPC by performing semistructured interviews of parents/caregivers (“parents”) across Ohio whose children have received HBHPC. We hypothesized that the 10 provider-prioritized domains and their definitions,⁵ as identified in our previous research, would be modified and augmented by parents for application in the pediatric HBHPC setting.

Methods

Participants and setting

This was a qualitative study employing grounded theory methodology, which utilized semistructured interviews of parents of children who had been enrolled in pediatric HBHPC programs across Ohio. Parents were recruited from Cincinnati Children's Hospital Medical Center in Cincinnati, Nationwide Children's Hospital in Columbus, and Akron Children's Hospital in Akron. This study was approved by the Institutional Review Boards at each site.

Eligible participants included bereaved parents of children or dependent young adults who were enrolled in a pediatric HBHPC program at the three sites from 2012 to 2016 and parents of children or dependent young adults who were currently enrolled in these programs for at least a year. If more than one parent requested to participate, they were interviewed together as a dyad. Exclusion criteria included parents of young adults who had previously lived independently. Spouses were likewise excluded as the ability to marry reflects an ability to live independently, and domains of quality hospice care previously identified in the adult literature would be applicable to these patients. Non-English-speaking parents, parents of children who were reasonably expected to die within the next three months, and those whose children died in the six months before recruitment were excluded. Potential participants were identified through registries in each program and mailed letters which included an opt-out card. Those who did not mail back the opt-out card within three weeks were then recruited by telephone. Across all sites, 206 potential participants were notified of the study by mail; 89 were subsequently attempted to be contacted by phone, and 39 consented to participate.

Procedure

A semistructured interview guide was created based on the 10 provider-prioritized domains of quality in HBHPC⁵ and the 6 domains defined by the Institute of Medicine.¹⁰ The guide was tested and refined through practice interviews with experts in pediatric HBHPC. Due to the timing of regulatory approval, interviews were held sequentially at each site: Cincinnati, then Columbus, then Akron. After informed consent was obtained, interviews were held at a location of the parents' choice, primarily in the home. Interviews were conducted by team members (R.T., D.G., H.M., E.K., and clinical research coordinators (CRCs) named in acknowledgments section) trained in qualitative methods. Interviewers had no prior relationship with participants. Interviews were digitally recorded, transcribed, and verified for accuracy before analysis. Data analysis, as described below, was concurrent with interviews. In the grounded theory research process, the investigator develops analytic interpretations of the data to focus further data collection in an iterative process. As such, questions were modified as the interviews progressed, guided by information provided by the participants, and discussed by the investigators in biweekly meetings until interpretive sufficiency was achieved using the criteria outlined by Charmaz.¹¹

Analysis

The transcribed texts were analyzed using grounded theory methodology. This method is frequently employed in health care and has been previously used by the study team.^12–18 Transcripts of each interview were deidentified and reviewed by at least two members of the research team using an inductive, text-driven approach to thematic content analysis.^19,20 After reading through all transcripts, at least three team members developed and applied initial open codes using NVivo 11 (QSR International, Victoria, Australia). This line-by-line coding led to the development of thematic categories of codes. The team met weekly to discuss emergent themes and to resolve coding discrepancies. In an iterative process, codes were reconstructed, refined, and revised.^21,22 The resultant thematic codes were then compared with the 10 provider-prioritized domains of quality in HBHPC⁵ and mapped onto existing domains wherever possible. The IOM domains of quality¹⁰ are general, and thematic responses to questions regarding these domains mapped cleanly onto the existing provider-prioritized domains of HBHPC. Themes and verbatim utterances within the codes were utilized in the creation of parent-prioritized domain definitions. Remaining codes that did not map to existing domains were examined to create and define de novo parent/caregiver-prioritized domains of quality.

Results

Thirty-nine interviews were conducted, including 19 bereaved families. Table 1 summarizes the number of interviews at each site and parent/caregiver identity (mother, father, or dyad). Parent-prioritized thematic codes mapped to 9 of the 10 provider-prioritized domains of quality HBHPC⁵; none mapped to the domain “Ethical and Legal Aspects of Care.” An 11th domain, Compassionate Care, was created and defined based on emergent themes. The domains and defining criteria are presented in Table 2, alongside provider-prioritized domains and defining criteria⁵ for comparison.

Table 1.

Number of Interviews and Interviewee Identity

Characteristic	N (%)
Gender
Male	2 (5)
Female	32 (82)
Dyad	5 (13)
Race/Ethnicity
Caucasian	40 (91)
Black	3 (7)
Other	1 (2)
Status
Active	20 (51)
Bereaved	19 (49)

Table 2.

Home-Based Hospice And Palliative Care Domains of Quality and Defining Criteria Described by Parents/Caregivers and Providers

Parent-prioritized defining criteria	Provider-prioritized defining criteria⁴
Domain 1: Structure and processes of care
The HBHPC program provides an extra layer of support to the family in the home. Specifically, the program accomplishes this by: - Having nurses and providers on call 24/7 to come to the home when needed - Decreasing the isolation conferred by the child's serious illness - Providing guidance and care planning through the child's journey Care in the home enables decreased risk of infections and avoidance of hospital admissions and visits, decreases trauma for child, allows normalcy for family, and improves child's quality-of-life. The HBHPC program provides those medications and equipment needed for family to care for child at home. All HBHPC team members come to the home, including social work, pastoral care, child life, music therapy, massage therapy, and OT/PT in addition to nurses and other providers. The HBHPC program provides open, ongoing communication with family through multiple modalities, including phone, text, MyChart, e-mail. The HBHPC program returns calls in a timely manner. The HBHPC program provides visit within 24 hours if requested by the family. The HBHPC program facilitates advance care planning respectfully and skillfully, and revises the plan as goals shift over time, appreciating the difficulty that families may experience in facing these choices. The HBHPC program works as a whole team with complementary skills to benefit the patient and family. The HBHPC program affirms the parent as a competent caregiver, integrates parents onto the care team, and teaches the family how to provide medical care for the child as the child's care needs evolve. The HBHPC team members are professional, maintaining appropriate inter-personal boundaries with patient, family and other staff members. The HBHPC team members are competent in the care they provide, demonstrating comfort in caring for children with rare, complex and life-limiting diseases.	A HBHPC program caring for children should make ongoing use of specialized pediatric hospice and palliative care expertise to meet the unique needs of this population. A comprehensive and timely assessment of the child and family forms the basis of care. Members of the HBHPC program will elicit and document preferences of the child to the degree possible using developmentally appropriate tools. The care plan is based on the identified and expressed preferences, values, goals, and needs of the child and family and is developed with shared decision making through professional guidance and support for the child/family decision making. The HBHPC program provides services to the child and family consistent with the care plan. In addition to chaplains, nurses, physicians, and social workers, other therapeutic disciplines who provide HBHPC services to children and families may include: case managers, child life specialists, nursing assistants, dietitians, occupational therapists, recreational therapists, respiratory therapists, pharmacists, physical therapists, bereavement specialists, psychologists, speech and language pathologists, and complementary/integrative therapies, including but not limited to massage, art, music and/or aroma therapists. The HBHPC program is encouraged to use appropriately trained and supervised volunteers. Support for education, training, and leadership and professional development is available to all members of the program. In its commitment to QAPI, the HBHPC program develops, implements, and maintains an ongoing data-driven process that reflects the complexity of the organization and focuses on relevant HBHPC outcomes. The HBHPC program recognizes the emotional impact of the provision of HBHPC on the team providing care to children with serious or life-threatening illnesses and their families and develops strategies to monitor, prevent, and intervene on an ongoing basis. Community resources ensure continuity of the highest quality HBHPC across the care continuum. The physical environment in which care is provided meets the preferences, needs, and circumstances of the child and family, to the extent possible.
Domain 2: Physical aspects of care
Parents define safe care as care that maintains the child's comfort. The HBHPC program provides an extra set of eyes to parents in assessing the child, providing reassurance and guidance, and anticipating potential problems. The HBHPC program provides adequate assessment and treatment of pain and symptoms. Specifically, team members are skilled in navigating the complexity of children who may protect parents in their symptom reporting and able to provide an objective assessment and recommendations for treatment. The HBHPC program educates parents on the physical safety of the child in the home environment: - Medication safety, including high-risk medications and use of a lockbox when appropriate - Proper use of DME including oxygen tank storage - Home maintenance issues such as fire alarm batteries	The HBHPC program assesses and manages physical symptoms, including pain, and their subsequent effects in a timely manner, based on best available evidence. The assessment and management of symptoms and side effects are tailored to the child's and family's goals, in the context of their disease status, to maximize quality of life. Children and families are educated in the assessment of pain and other symptoms and in how to manage other physical aspects of care.
Domain 3: Psychological and psychiatric aspects of care
The HBHPC program enables positive coping in the parent and child through: - Active listening - Normalizing experiences - Providing an emotionally safe space - Scheduling visits as determined by family's unique needs - Providing structured opportunities for patients and families to process emotionally and spiritually	The HBHPC program assesses and addresses psychological and psychiatric aspects of care, based upon the best available evidence, to maximize child and family coping and quality of life. The assessment and management of psychological and psychiatric aspects of care recognize the unique stress on the child living with this illness, and on the family in caring for a child with a serious or life-threatening illness. The assessment and management of psychological and psychiatric aspects of care recognize that stress may manifest in ways that are both physical and psychological.
Domain 4: Social aspects of care
The HBHPC program appreciates and targets the immense impact the child's disease has on siblings through - Availability of expressive therapies including child life, music and art to provide therapy to the child and siblings as well as memory making opportunities - Provision of care in home - Provision of resources to unite siblings with peers with similar experiences, such as annual or summer camp opportunities The HBHPC program appreciates the tremendous financial strain and frequent job loss of caring for a seriously ill child and provides resources to ameliorate this strain, including insurance resources and material support for families in need. The HBHPC program appreciates the strain of the child's illness on the entire family unit and the impact on the family dynamic. The HBHPC program appreciates the unique experiences siblings of children receiving HBHPC and advocates for their needs within the family.	A comprehensive, family-centered interdisciplinary assessment (as described in “Structures and Processes of Care”) identifies the social determinants of health, as well as the resources, needs, and goals of each child and family to maximize child/family strengths and well-being. The specific needs of the sibling(s) are assessed and addressed. The plan of care may address the school environment and consider advance care planning, which may include but not be limited to DNR orders in a school setting; interacting with school nurses, educators, and classmates; DME at school; and transportation.
Domain 5: Spiritual, religious, and existential aspects of care
The HBHPC program provides opportunities to engage spiritual and religious beliefs and practices to facilitate coping. The HBHPC program appreciates the spiritual difficulty in witnessing and experiencing the suffering of a child. The HBHPC program helps people construct spiritual meaning around the experience of the child's illness, their own journey, and the family's journey.	The HBHPC program ensures that spiritual, religious, and existential dimensions of care for both the child and family are assessed and addressed, recognizing that there may be significant differences between the child and family. A screening for spiritual struggle, distress or spiritual needs of the child and family is performed, and a spiritual assessment is performed. Chaplains, ideally with pediatric experience, conduct spiritual assessments, participate in determining use of spiritual screening tools, and mediate conflicts involving spirituality/religiosity and medical decision making. The HBHPC program facilitates religious, spiritual, and cultural rituals or practices as desired by the child and family, especially at and after the time of death.
Domain 6: Cultural aspects of care
The HBHPC program enters nonjudgmentally into the family system. The HBHPC program respects family's time and physical space. The HBHPC program respects family's decisions and care goals for the child. The HBHPC program listens respectfully to family's needs and responds nonjudgmentally. The HBHPC program respects family's religious and spiritual beliefs and practices.	The HBHPC program provides care to each child, family, and community in a culturally and linguistically appropriate manner. The HBHPC program supports children and families by approaching medical decisions in ways that are respectful of their culture and values. The HBHPC program is a resource to other providers in navigating cultural practices as they relate to child care. The HBHPC program meets and maintains its cultural and linguistic competence according to accepted standards.
Domain 7: Care of the child at the end-of-life
The HBHPC program appreciates parental fear of child dying or finding child dead in the home and normalizes this fear when appropriate. The HBHPC program understands the importance of the location of the child's death and enables death in the location of choice. The HBHPC program appreciates the difficulty of talking about death between parent and child and facilitates communication. The HBHPC program provides opportunities for legacy building and memory making at end-of-life. HBHPC team members provide hands-on end-of-life care, including assisting parents in bathing and dressing child at the time of death and facilitating post-mortem care logistics. HBHPC team members normalize the child's dying process and provide anticipatory guidance to parents, siblings and other family members.	The HBHPC program educates families on the expectations and the process of dying and normalizes the experience when appropriate. The HBHPC program identifies, communicates, and manages the signs and symptoms of children at the end of life to meet the physical, psychosocial, spiritual, social, and cultural needs of children and families. In collaboration with the child and family, the HBHPC program develops, documents, and implements a care plan regarding desire for treatments and procedures, preference for site of care, signs and symptoms, child and attendance of family and/or community members at the bedside at end of life. In the context of the child's end of life, the specific needs of the sibling(s) are assessed and addressed. Post-death care is delivered in a respectful manner that honors the child's and family's culture and spiritual/religious practices.
Domain 8: Ethical and legal aspects of care
	The child's or parent's/legal guardian's goals, preferences, and choices are respected within the limits of applicable state and federal law, current accepted standards of medical care, and professional standards of practice. Person-centered goals, preferences, and choices form the basis for the plan of care.The child's assent to the care plan is elicited and documented when possible.In the event of unresolved conflict between child's and parent's goals, between the family and treatment team, and/or if the child withholds assent, the HBHPC program may act in consultation with a bioethics committee, and the outcome of that consultation is documented.The HBHPC program identifies, acknowledges, and addresses the complex ethical issues arising in the care of children with serious or life-threatening illness.The provision of HBHPC occurs in accordance with professional, state and federal laws, regulations, and current accepted standards of care.
Domain 9: Coordination of care
HBHPC team members engage in ongoing, open communication with one another to remain up to date on the child's needs.HBHPC team members advocates for the family's goals and needs across care settings.HBHPC team members are available to provide support to the family across care settings.Families value a core set of HBHPC team members, but are tremendously negatively impacted by staff turnover when their care team is limited.Continuity of care with the HBHPC team facilitates a strong sense of “knowing the child,” or familiarity with and anticipation of each child's unique needs.The HBHPC program assists parents in navigating the complex health care system through: - Coordinating care with other services across care settings - Provision of medications and DME - Communication with the child's primary medical home - Coordinating care needs with the child's school	The plan of care for the child and family is developed, documented, regularly reviewed, and revised by the HBHPC program, with the wishes of the child and family and outcome goals clearly defined and agreed upon.The HBHPC program provides continuity of care and coordination among medical providers, with emphasis on maximizing the child's goals and advocating for the child's and family's well-being in the context of complex medical systems.When possible, the HBHPC program coordinates services that the child and family need during the HBHPC experience, which may include coordination of DME, medications, school needs, private duty nursing, etc.The HBHPC program maintains regular, high quality communication among medical providers and assists in the interpretation of multiple consultant perspectives.
Domain 10: Bereavement care
Bereavement care is provided in the home.The HBHPC program provides bereavement care and/or grief counseling for entire family.Bereavement care should be provided for at least two years, although some families may desire a longer or shorter time period.The HBHPC program should provide memorial services, inviting families to participate every year, as families see this as an opportunity to honor their children.The HBHPC program offers diverse grief care modalities for parents and children, and targets gender-specific needs for mothers and fathers.	A pediatric bereavement program acknowledges that grief begins with anticipatory grief and continues long after the child dies, and includes the child's family and those people outside of the child's family who are impacted by the child's death (e.g., staff, community physicians, foster parents and others).A core component of the HBHPC program is a grief and bereavement program available to children, families, and community members impacted by the child's death.The qualifications of bereavement providers include understanding the developmental and psychological needs of the child patient, siblings, parents, family, or classmate/friend(s).Specific bereavement interventions are provided throughout the child's life and on an ongoing basis after the child's death.
Domain 11: Compassionate care
Families perceive HBHPC team members' actions and presence as a comfort and source of support.The HBHPC program decreases the spiritual and physical isolation engendered by a child's suffering, to which team members also bear witness.Families perceive that HBHPC team members approach care from a sense of vocation of service rather than employment.HBHPC team members interact with child and family compassionately, as exemplified through nonmedical interactions that promote relationship building.HBHPC team members approach the child with keen awareness of the child's unique, inherent value and humanity.

DME, durable medical equipment; DNR, do-not-resuscitate order; HBHPC, home-based hospice and palliative care; OT/PT, occupational therapy/physical therapy; QAPI, quality assessment and performance improvement.

Domain 1: Structure and processes of care

Themes, which related to the location of care, specifically, care in the home, were mapped into this domain, in addition to themes focusing on the importance of a team that is experienced and comfortable with caring for children with rare diseases.

Exemplar quotes:

“We had a level of comfort with them that they gave to us which was the first time we'd had that level of comfort with anyone related to his condition.”

“Caring for [patient] in the home has been very like comforting, enabling. It's restored some semblance of normalcy in our lives. Like we can make dinner together…”

“The value added was in the stress it reduced for [patient]…she could just be in her pajamas…the one-on-one was so much less daunting for her than going to the big clinic and being in a big hospital.”

Domain 2: Physical aspects of care

Themes that focused on the child's physical comfort and safety, including pain and symptom management, and themes relating to the medical support that team members provided, mapped into this domain.

Exemplar quotes:

“I need somebody I can call and I need somebody that can come out and you know, make sure that I'm not…overreacting or underreacting.”

“Safe care means that her comfort level is good.”

“A big thing for [program] is that I want to make sure they control pain.”

Domain 3: Psychological and psychiatric aspects of care

Families described the importance of the HBHPC program in helping them to cope with their child's illness; those themes mapped into this domain.

Exemplar quotes:

“Just being the regular sounding board that respects our opinion, that hears our concerns and addresses them, that treats us like a normal human being and not condescending.”

“Safe as in trusting, like you can share something with them and trusting that they're not going to take that information and manipulate it; honorable…”

Domain 4: Social aspects of care

Themes related to the impact of the child's illness on the entire family, especially the siblings, as well as the impact of social determinants of health, mapped into this domain.

Exemplar quotes:

“They're here to help every family member get through what is going on inside the home, to understand what their sister is going through and if they need to talk to get through everything.”

“It's all connected. It's very, very good for the kids and it also helps the parents and the families, memories and things that they do…. things with [brother] too, to get him to have memories with his sister.”

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

Themes that specifically related to how the program can help support the ways in which families turn to faith, spirituality, and religion to cope with the child's illness were mapped into this domain.

Exemplar quotes:

“When he (patient) is struggling with like whether it would be his condition or his anxiety or whatever, that (spirituality) is what he leans on…so it was really helpful when they (chaplains) would come and they would talk with us….”

“She had a very good understanding and a very good grasp of why we believe what we believed and openly offered that support to us.”

Domain 6: Cultural aspects of care

Families commonly spoke about the way that the programs respected them, their religion, their goals and values, and their family system; those themes were mapped into this domain.

Exemplar quotes:

“I think even when we're incredibly angry or frustrated, they maintain their calm, they never, you know, they never judge, they never get defensive, you know. So, that's being respectful of our feelings, you know, and they listen.”

“I always felt very confident in their opinions but I also felt very confident in knowing that if I disagreed with their opinions, that they were not going to be upset.”

“They respect how I run my home, how I raise my children, whatever ethnic background we are or religion we are, they're very respectful of it.”

Domain 7: Care of the child at the EOL

Themes that mapped into this domain were rooted in the parental experience of their child's physical decline and death before, during, and immediately after the child died.

Exemplar quotes:

“I think one of the biggest fears, of course, for me, was what it was going to be like when she did die, thinking about, ‘Oh, my god, is my kid really going to die in my house? This is freaking me out.’ And again, I think [program] was that just calming reassurance that you're doing the right thing. It's going to be OK…and it was amazing.”

“They made it possible for him to stay here by providing him the medicines and the stuff to keep him comfortable and let him die here in his own bed, in his own room.”

Domain 9: Coordination of care

Themes regarding the HBHPC team's involvement in care across care settings, the importance of continuity of team members, and how the team supports the family in navigating the complex medical health care system mapped into this domain.

Exemplar quotes:

“I liked the aspect of the coordinated care, that they could help because it was apparent that we were going to have a lot of special needs and many different doctors, that they would be able to help us navigate all of it. It was a lot.”

“Helping us trudge through all the different areas of this very foreign world that we were all of a sudden in.”

“It's been nice to have somebody stand in the gap and say, you know, this is what hospice and palliative looks like and this is their wishes.”

Domain 10: Bereavement care

Themes mapping into this domain described the location and duration that bereavement care should be offered that it should be offered to all members of the family with specific resources targeting different roles (mother vs. father vs. sibling), and that the program should provide opportunities to honor the child's memory through remembrance ceremonies.

Exemplar quotes:

“[Chaplain] still came out every two weeks to every four weeks for two years. That was amazing and that's what I needed and I think that was so critical.”

“I wouldn't want to be there [hospital]. I mean, it was more comfortable at home…we've tried to find different avenues for that [support groups] but I think having that one on one sort of in our home certainly helped.”

Domain 11: Compassionate care

Multiple themes arose describing that the care provided by HBHPC team members was exceptionally compassionate. The HBHPC team, through their physical and emotional presence, decreased the emotional and physical isolation engendered by the child's illness. Parents recognized that their children were treated as unique and special human beings. They also noted that team members seemed drawn to the field as a vocation. Out of those themes, the Compassionate Care domain was created de novo as these reflections were not adequately captured by the criteria of the previously established domains.

Exemplar quotes:

“There's no way to help. There's just no way to help and they did.”

“I think they took a really awful situation and made it—you didn't feel alone.”

“I think forever and ever, until I die, I will always remember the even the little things, you know, that they've done.”

“I really feel like the [program] staff is there because they're very interested and they want to be there. And they love kids and they love helping families.”

Discussion

To design high-quality systems for the delivery of pediatric HBHPC, we must arrive at a patient- and family-centered understanding of what is meant by “quality.”²³ Patients and families are coproducers of health together with clinicians; they have a responsibility to identify their own needs and preferences and to evaluate the performance of the systems which serve them.²³ Although there is a body of literature exploring caregiver and patient perspectives of quality in adult HPC^24–33 and EOL care for children with cancer,^2,34–39 scant literature exists regarding parent perspectives of quality in pediatric HBHPC.³⁸ This project sought to close that gap. We found that although most of the provider-prioritized domains⁵ are pertinent to parents, parents defined these domains differently, deepening our understanding and perspective of quality within each domain.

For example, provider-prioritized criteria of “Structure and Processes of Care” focus on team structure and the development of a patient-centered plan of care.⁵ Parent/caregiver-prioritized criteria of this domain focus more on the unique makeup and mindset of a HBHPC to care for a child with a rare, life-limiting disease. In “Physical Aspects of Care,” provider-prioritized criteria focus on the timely assessment and treatment of pain and other symptoms, presumably to prevent and relieve suffering.⁵ Parent/caregiver-prioritized criteria in this domain emphasize this as a safety issue—that we assess and treat pain because safe care is care that maintains and promotes their child's comfort. In the criteria for “Cultural Aspects of Care,” families remind us that respect is more than linguistic competence and nonjudgment; it is also about respecting a family's physical space, their schedules, and entering nonjudgmentally into their family systems and homes.

Reflecting upon how parents and providers define quality in HBHPC in complementary ways, it seems providers focus more on the “what,” whereas parents tend to prioritize the “why.” The overall result is a more complete picture not just describing what families need, but also why they need it. As we design systems to measure the quality of care provided in HBHPC programs, this broader perspective should enable the choice of measures which are truly patient- and family-centered and not simply process oriented.

Parents prioritized Compassionate Care as a new domain of quality in pediatric HBHPC. This should not be surprising; etymologically, “compassion” means “suffering with,⁴⁰” and a primary goal of palliative care is to mitigate suffering for both the patient and the family.⁴¹ Yet other domains of quality in HPC^4,5,9 have not emphasized the importance of compassion in providing high-quality care. Compassionate care may seem intuitive to HPC providers as foundational to good care. Yet reports of substandard care have led to concerns regarding the state of compassion in healthcare^42,43 and, in New Zealand, even led to a campaign for compassion to be included as a fundamental patient right.⁴⁴ Moreover, compassion as a construct in health care remains both poorly defined and under-researched.⁴²

Parents described multiple facets of care that were combined to form the new domain of Compassionate Care. These themes included that nonmedical interactions promote relationship building; that team members' actions and presence are perceived as a comfort and source of support; that they decrease the physical and spiritual isolation engendered by the child's suffering; that they approach care from a sense of vocation; and that they approach the child with a keen awareness of that child's unique, inherent value and humanity. Similar themes have been echoed as elements of compassionate care in other studies exploring patient experiences of compassion in nursing and hospice.^45–49 A study of hospice workers identified “noticing or recognizing another's suffering,” “feeling and connecting to individuals in suffering,” and “responding or reacting to suffering” as elements of compassionate care.⁴⁷ “Paying attention to the little things,”⁴⁹ knowing “who people are and what matters to them,”⁴⁸ and small acts of kindness^50,51 have also been described as features of compassionate care. Thus, while the domain of Compassionate Care and defining criteria were developed de novo in this study, the themes comprising them have been reflected previously, lending face validity to these findings.

This study has several limitations. The cohort was primarily Caucasian, non-Hispanic, women/mothers, and all live in Ohio, limiting generalizability of our findings. The experiences of men/fathers and minorities bear further exploration and deserve unique focus in future studies. Participants received care across three unique sites, each of which offers slightly different services, increasing the generalizability of our findings. Future studies are needed to evaluate whether these domains and criteria are generalizable to other care settings, as well as to explore the patient voice in describing high-quality care in pediatric HPC.

Conclusions

Parent/caregiver-prioritized domains of quality in pediatric HBHPC map closely to provider-prioritized domains, but parents define these domains differently, deepening our understanding and perspective of quality within each domain. Parents also prioritize Compassionate Care as a new domain of quality in pediatric HBHPC. Measuring the quality of care provided in HBHPC programs through this broader perspective should enable the selection of measures which are truly patient- and family centered.

Footnotes

Acknowledgments

The authors gratefully acknowledge the contributions of all parents who participated in this study. They also thank Valerie Shaner, John Betz, Alexis Teeters and Katrina Lewis for their contributions in helping to conduct and analyze patient interviews.

Funding Information

Dr. Thienprayoon received two intramural grants from Cincinnati Children's Hospital Medical Center, the Place Outcomes Research Award, and the Schmidlapp Womens Scholar Award in support of this work.

Author Disclosure Statement

No competing financial interests exist.

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