The Home-based Experiences of Palliative and Hospice Care for Children and Caregivers (EXPERIENCE) Measure: Evaluation of psychometric properties

Abstract

Context:

Home-based pediatric palliative and hospice care (PPHC) supports the hundreds of thousands of children with serious illness and complex care needs and their families in the home setting. Considerable variation, however, exists in the provision and quality of home-based PPHC in the U.S. Ensuring equitable, high-quality home-based PPHC for all children requires the evaluation of families’ care experiences and assessment of whether these experiences are aligned with their needs and priorities.

Objectives:

To evaluate the psychometric properties of the previously developed 23-item home-based PPHC EXPERIENCE Measure for use with families of children receiving home-based PPHC in the U.S.

Methods:

Participants included families recruited from the Children’s Hospital of Philadelphia, Courageous Parents Network, and several other hospital- and community-based PPHC programs across the U.S. who provide home-based PPHC services. Participants completed the EXPERIENCE Measure at baseline and again at retest. We evaluated the factor structure of the EXPERIENCE Measure, as well as evidence regarding score reliability and validity.

Results:

82 family participants completed the baseline and 53 completed the retest questionnaire from 15 states across the U.S. We found evidence for the score reliability and validity of a four-domain EXPERIENCE measure.

Conclusion:

The EXPERIENCE Measure is a tool with evidence for reliable and valid scores to evaluate family-reported home-based PPHC experiences at the time care is being received. Future work will evaluate the usability (i.e., acceptability, feasibility, and clinical actionability) of EXPERIENCE, including the sensitivity of the instrument to change over time and its impact on real-time clinical actions.

Introduction

Home is the primary, and often preferred, location of care for the hundreds of thousands of children with serious illness in the U.S.(1) who live with significant and complex care needs.(2–5) Home-based pediatric palliative and hospice care (PPHC) supports these children and families within the broader contextual influences of children’s familial and social environments through a complex network of hospital-based, outpatient, and home-based medical and supportive services.(6–10) Team composition and services, however, are influenced by state and local regulations and resources, and unsurprisingly, considerable variation exists in the provision and quality of home-based PPHC in the U.S.(6, 7, 11–17)

Children and families need consistent, high-quality care, yet they may not receive consistently high-quality PPHC at home.(6, 7, 12–15, 17) Challenges exist in availability of home care and hospice clinicians with adequate training and experience with caring for children with medically-complex needs.(17–22) Families also report poorly coordinated care and communication gaps with clinicians who may be based at geographically-distant children’s hospitals, as well as other social and structural challenges, including but not limited to financial stress, household material hardships, inadequate social support, inaccessible housing, inaccessible and unreliable transportation, and other critical shortages in medical and social services (e.g., pharmacies).(6, 10, 16, 23–32) Together, these factors have deleterious impacts on children’s and families’ health and wellbeing.(16, 33–37)

A foundational step to ensuring equitable, high-quality home-based PPHC for all children is to evaluate families’ experiences with home-based PPHC and to assess whether these experiences are aligned with their needs and priorities. In prior work, we worked with PPHC advocates and researchers, PPHC clinicians, and families who received home-based PPHC to develop the Home-based Experiences of Palliative and Hospice Care for Children and Caregivers (EXPERIENCE) Measure, the first instrument to assess families’ experiences with home-based PPHC in the U.S. at the time care is being received.(38, 39) The current paper presents an evaluation of the psychometric properties of the EXPERIENCE Measure.

Methods

Design

We followed a prospective study design to confirm the factor structure and evaluate evidence for validity and reliability of the EXPERIENCE Measure for measuring home-based PPHC experiences in the U.S.

Participants

Participants in this study included family caregivers recruited from the Children’s Hospital of Philadelphia (CHOP), Courageous Parents Network (CPN),(40) and several other hospital- and community-based PPHC programs across the U.S. who provide home-based PPHC services (see Appendix). Participants (e.g., parents, grandparents, adoptive parents) were included if they had a child or young adult with a serious illness(1) aged 30 years or younger who was actively receiving home-based PPHC services, which could include services received from hospital-based or outpatient PPC teams providing care to families residing at home through phone calls, video calls, home visits, or clinic visits, during the study period. Participants were excluded if they were not able read, write, and speak English or Spanish; if they did not reside in the same household as their child; or if they were not the child’s legal guardian and/or primary decision-maker.

Data collection

Data were collected between January 2021 and March 2023. See Appendix for information about study procedures, recruitment, and data collection.

Sample size considerations

Using the commonly accepted sample size guidelines of 5 to 10 participants per item,(41, 42) we aimed to recruit at least 100 participants. To evaluate stability of scores over time, we aimed for at least 30 participants to complete the retest.(43)

Study measures

The EXPERIENCE Measure.

The EXPERIENCE Measure, developed in a prior project with families, PPHC clinicians and other experts, and parent advocates,(38) contains 23 items that span four major domains of high-quality home-based PPHC. These domains were developed based on the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care,(44) PPHC expert panelists’ and families’ ratings of high-value domains of home-based PPHC,(39) and PPHC quality guidelines.(39, 45–48) The physical domain encompasses symptom management. The psychological and emotional domain encompasses care for the child’s and families’ feelings and emotional needs, while the communication and relationships domain encompasses key aspects of communication and the relationship between families and care teams throughout the child’s illness and end of life. Finally, the structure and processes domain encompasses clinicians’ knowledge and skills, care coordination, and continuity of care.

While the initial instrument contained 22 items,(38) one new item (My goals for my child’s overall health and well-being are supported) was later added at participants’ request. Respondents select their answers to items based on their care experiences over the prior month. Each item is measured on a 5-point scale (1=Strongly Disagree, 2=Disagree, 3=Neutral, 4=Agree, 5=Strongly Agree). All items have an ascending positive valance (care is perceived as better) as scores increase. Fourteen items are considered “core items” that require a response from all respondents; the remaining nine “supplemental items” allow respondents to select a “does not apply” response (e.g., respondents can skip the sibling support question if the family does not have other children). The measure also includes an unscored write-in option for “Additional concerns not elsewhere addressed.” The EXPERIENCE Measure was professionally translated into Spanish and pilot tested with a native Spanish-speaking staff member at CHOP.

Other measures.

Participants also completed a demographic questionnaire and measures of care satisfaction, desire for care improvement, parental psychological distress (Kessler-6), and family life difficulty (Appendix Table 1).

Data analysis

Item-level statistics.

We described means, variances, missingness, item-domain, and item-core scale correlations.

Factor structure.

We conducted a factor analysis in order to evaluate if the EXPERIENCE Measure adequately measures and reflects the structure of the construct of high-quality home-based PPHC, as perceived by families receiving care.(49) Due to missing responses on the supplemental items, we completed a principal component analysis (PCA) on only the 14 core items to re-evaluate the original four-domain structure of the EXPERIENCE Measure and to parsimoniously summarize interrelationships between EXPERIENCE items.(49) Orthogonal principal components, or uncorrelated linear combinations of the original items, were identified,(49) and based on standard practice, we extracted the top components that together accounted for a minimum of 70% of the variance.(49) We conducted an oblique factor rotation to improve interpretability and account for correlations between components,(49) and items with loadings less than an a priori selected threshold of 0.30 were considered for removal from the measure.

Reliability.

We evaluated evidence for reliability based on internal consistency (i.e., do items measure the same construct?)(50, 51) for the 14-item core measure and across domains (disattenuated Cronbach’s α), where an α value of 0.70-0.90 indicates acceptable internal consistency.(52) We evaluated evidence for reliability based on temporal stability (i.e., does the measure produce similar results from test to retest?)(50) using a two-way mixed effects model with absolute agreement of scores; an intraclass correlation coefficient (ICC) value of <0.5 indicates poor reliability, 0.5-0.75 moderate reliability, and >0.75 good to excellent reliability.(53)

Construct Validity.

We initially evaluated content validity(51) through cognitive interviews with parents in our prior study.(38) In the current study, we evaluated for evidence for construct validity based on hypothesized relationships to external variables (i.e., do scores correlate with scores from another outcome for which a relationship is expected?).(50, 51) We first compared consistency of the core measure, each domain, and the 14 core item scores using Pearson correlation coefficient (r) with a criterion measure of care satisfaction “Overall, how satisfied are you with your child’s home-based PPHC or hospice care?” Individual items with correlation <0.30 were considered for deletion.(43, 54) Finally, we computed a Pearson correlation (r) between the EXPERIENCE core, domain, and item scores and other external variables. Based on existing literature and clinical expertise, we evaluated a priori assumptions about the directionality and strength of relationships between EXPERIENCE and these other measures (Appendix Table 1). Pearson r values of 0.00-0.29 represents a weak relationship, 0.30-0.49 a low relationship, 0.50-0.69 a moderate relationship, and 0.70-0.89 a strong relationship.(49) All statistical analyses were performed using the statistical software package Stata/IC 17.

Results

Eighty-two family caregivers of 81 patients completed the baseline and 53 took the retest questionnaire. Participants were primarily White (82.9%), non-Hispanic (87.8%) mothers (86.6%) who were married/partnered (79.3%) and had a college education or higher (70.7%) (Table 1). The mean age of participants was 40.8 years (SD 8.5) and 69.5% of participants reported “no” to “a little” financial difficulty. The children of these participants received care across 15 U.S. states, with a majority participating from Northeastern (52.4%) and Midwestern (25.6%) regions. These children had a mean age of 9.6 years (SD 7.3) and a broad array of primary diagnoses, including neurological/neuromuscular (60.5%), genetic/congenital (43.2%), and respiratory (30.9%) disorders (Table 2).

Table 1:

Family Participant Demographic Information

Family Participants’ Characteristics (n = 82)		No. (%)
Family Caregiver Type	Mother	71 (86.6)
	Father	8 (9.8)
	Prefer not to answer/other/missing	3 (3.7)
Age	Mean (standard deviation; SD)	40.8 (8.5)
	Missing	2
Race	White	68 (82.9)
	Black	3 (3.7)
	Asian	2 (2.4)
	Other (Native Hawaiian/Pacific Islander, > 1 race)	3 (3.7)
	Prefer not to answer/missing	6 (7.3)
Ethnicity	Non-Hispanic	72 (87.8)
	Hispanic	6 (7.3)
	Mixed ethnicity	1 (1.2)
	Prefer not to answer/missing	3 (3.7)
Highest Education Level Completed	High school/General Educational Diploma	8 (9.8)
	Trade/technical/vocational/some college	14 (17.1)
	College/graduate school	58 (70.7)
	Preferred not to answer/missing	2 (2.4)
Preferred Language Spoken at Home	English	78 (95.1)
	Spanish	3 (3.7)
	Prefer not to answer/other/missing	1 (1.2)
Relationship Status	Married/partnered	65 (79.3)
	Separated/divorced/widowed	6 (7.3)
	Single	7 (8.5)
	Prefer not to answer/other/missing	4 (4.9)
Number of Other Children	0	13 (15.9)
	1 to 3	60 (73.2)
	4 or more	6 (7.3)
	Missing	3 (3.7)
Employment Status	Full time	23 (28)
	Part time	11 (13.4)
	Not employed/Retired/Looking for employment	14 (17.1)
	Homemaker	17 (20.7)
	On leave for child’s illness	10 (12.2)
	Prefer not to answer/other/missing	7 (8.5)
Geographic Location	Northeastern U.S.	43 (52.4)
	Southeastern U.S.	13 (15.9)
	Midwestern U.S.	21 (25.6)
	Western U.S.	3 (3.7)
	Missing	2 (2.4)
Financial Difficulty	No difficulty	40 (48.8)
	A little difficulty	17 (20.7)
	Some difficulty	9 (11)
	Quite a bit of difficulty	5 (6.1)
	A great deal of difficulty	4 (4.9)
	Prefer not to answer/missing	7 (8.5)

Table 2:

Child Demographic Information

Children of Family Participants’ Characteristics (n = 81)		No. (%)
Gender	Female	42 (51.9)
	Male	37 (45.7)
	Missing	2 (2.5)
Age	Mean (standard deviation; SD)	9.6 (7.3)
	Missing	2
Primary Diagnosis(es)	Cancer	22 (27.2)
	Cardiovascular	8 (9.9)
	Gastrointestinal	17 (21)
Genetic or congenital	35 (43.2)
	Hematologic or immunologic	5 (6.1)
	Metabolic	6 (7.4)
	Neurologic or neuromuscular	49 (60.5)
	Renal	7 (8.6)
	Respiratory	25 (30.9)
	Other	12 (14.8)
	Prefer not to answer/missing	1 (1.2)
Length of Time with PPHC at Home	Less than 1 month	8 (9.9)
	1 to 6 months	26 (32.1)
	7 to 12 months	5 (6.2)
	1 to 2 years	18 (22.2)
	More than 2 years	22 (27.2)
	Missing	2 (2.5)
Primary Provider of PPHC at Home	Hospice team	12 (14.8)
	Palliative care team	46 (56.8)
	Both hospice and palliative care	11 (13.6)
	Other/unsure/missing	12 (14.8)
Insurance Type	Public	25 (30.9)
	Private	16 (19.8)
	Both public and private	38 (46.9)
	Missing	2 (2.5)

^*Note: categories not mutually exclusive

Item-level statistics.

Eighty-two participants completed the 14 core items; the supplemental items had between 38 and 81 completed responses. Mean scores (max score: 5) for all items ranged from 3.67 (SD 1.09) (My other children’s feelings and emotions are cared for) to 4.79 (SD 0.51) (I feel comfortable sharing my opinions and concerns about my child with my child’s care providers) (Table 2). For core items, item-core scale correlations ranged from 0.38-0.66 (Table 3).

Table 3:

EXPERIENCE Measure Domain and Item Summary (Baseline)

Domain: Family’s Needs		Domain Correlation (Cronbach’s α): 0.82
#	Core Domain Items	N	Mean	SD	Min	Max	Item-Domain Correlation	Item-Core Scale Correlation
1	I have enough resources to support my needs as my child’s caregiver.	82	3.89	1.05	1	5	0.69	0.65
2	I can hope for the best possible outcome for my child’s health and also feel prepared if that outcome doesn’t happen.	82	3.98	0.90	1	5	0.54	0.46
3	My feelings and emotions, including fear, worry, sadness, and hope, are cared for.	82	3.78	1.03	1	5	0.70	0.58
4	All of my child’s needs are considered by my child’s care providers.	82	4.33	0.83	1	5	0.64	0.62
Domain: Family-Care Team Relationship		Domain Correlation (α): 0.75
#	Core Domain Items	N	Mean	SD	Min	Max	Item-Domain Correlation	Item-Core Scale Correlation
5	Overall, I trust my child’s care providers.	82	4.64	0.62	2	5	0.61	0.58
6	I feel comfortable sharing my opinions and concerns about my child with my child’s care providers.	82	4.79	0.51	2	5	0.42	0.42
7	I work together with my child’s care providers to make decisions about my child’s medical care at home.	82	4.54	0.78	1	5	0.69	0.57
8	My child’s care providers work together to support our family’s goals for my child’s care at home.	82	4.29	1.05	1	5	0.57	0.66
Domain: Physical Care of Child		Domain Correlation (α): 0.78
#	Core Domain Items	N	Mean	SD	Min	Max	Item-Domain Correlation	Item-Core Scale Correlation
9	I have enough information to make informed health care decisions about my child’s care at home.	82	4.56	0.63	2	5	0.57	0.57
10	I feel confident in managing my child’s medical care at home.	82	4.39	0.84	1	5	0.57	0.55
11	I have the guidance needed to care for my child at home.	82	4.35	0.85	1	5	0.65	0.65
12	I have the information and strategies to effectively manage my child’s pain and other physical symptoms at home.	82	4.22	0.89	1	5	0.59	0.59
Domain: Care Management		Domain Correlation (α): 0.60
#	Core Domain Items	N	Mean	SD	Min	Max	Item-Domain Correlation	Item-Core Scale Correlation
13	I am able to get in contact with my child’s care providers when I need them.	82	4.54	0.61	2	5	N/A (only 2 items)	0.38
14	I have a provider who can help me coordinate or organize my child’s care while my child is at home.	82	4.13	1.00	1	5	N/A (only 2 items)	0.64
Supplemental Items		N	Mean	SD	Min	Max	Item-Domain Correlation	Item-Total Scale Correlation
S1	My child’s physical symptoms are treated so that my child has as good a quality of life as possible.	81	4.36	0.98	1	5	N/A	0.58
S2	My goals for my child’s overall health and well-being are supported.	73	4.41	0.70	2	5	N/A	0.63
S3	My child has opportunities to express feelings, such as fears, worries, and hopes.	38	4.21	1.04	1	5	N/A	0.50
S4	My other children’s feelings and emotions are cared for.	63	3.67	1.90	1	5	N/A	0.33
S5	I can talk about my child’s end of life with my child’s care providers.	58	4.14	0.91	1	5	N/A	0.37
S6	I can talk with my child’s care providers about my child’s last weeks of life and what that time may be like.	39	3.77	1.01	1	5	N/A	0.24
S7	My home is adapted to support my child’s current care needs.	75	3.92	1.04	1	5	N/A	0.56
S8	The nurses have the knowledge, skills, and experience to care for my child at home.	66	4.39	0.76	3	5	N/A	0.58
S9	The doctors and nurse practitioners have the knowledge, skills, and experience to care for my child at home.	73	4.47	0.82	1	5	N/A	0.57

Principal component analysis.

Eigenvalues for the unrotated top four components were 5.85, 1.53, 1.20, and 0.97, respectively, accounting for nearly 70% of the total variance. These top four components were extracted and rotated, and all items loaded >0.30 on one of the four components (Appendix Table 2). The loadings of these items, however, differed from the original expert-defined domains. The new domains identified were: Family’s Needs (support needs of the child or family members); Family-Care Team Relationship (interactions between the family and PPHC team); Physical Care of the Child (care of the child’s physical needs by families); and Acute and Chronic Care Management (activities that help families in managing their child’s healthcare).

Reliability.

Internal Consistency.

Cronbach’s alpha (α) for the core measure was 0.89, representing acceptable internal consistency.(52) Domain-level α ranged from 0.60 (Care Management) to 0.82 (Family’s Needs) (Table 3). Disattenuated inter-domain correlations ranged from 0.64 (Family’s Needs and Physical Care) to 0.85 (Family-Team Relationship and Physical Care).

Temporal Stability.

Fifty-three participants started the retest, although only 52 completed all core items. The median number of days between test to retest was 4 (range: 2-41). Across participants, absolute differences between test and retest item scores ranged from one to four points. The ICC was 0.78 for the core score, and domains ranged from 0.58 (Care Management) to 0.76 (Physical Care) (Appendix Table 4), representing moderate to good/excellent reliability.(53)

Construct Validity.

Hypothesized relationships to external variables.

Pearson correlation (r) between EXPERIENCE core score and external variables ranged from 0.52 (Satisfaction with Care) to −0.57 (Desire for Care Improvement), representing moderate relationships.(49) All relationships with external variables were consistent with a priori assumptions regarding directionality; for example, EXPERIENCE had positive correlations with care satisfaction (that is, as EXPERIENCE scores increased, indicating better care experiences, so did satisfaction scores) and negative correlations with Desire for Care Improvement (that is, increasing EXPERIENCE scores were correlated with decreasing desire to see improvements in care).

Correlations among EXPERIENCE domains and satisfaction ranged from 0.35 (Family’s Needs) to 0.50 (Physical Care) (Fig. 1), representing low to moderate relationships.(49) Nevertheless, all relationships were consistent with a priori assumptions regarding directionality. All other correlations between EXPERIENCE items with external variables are displayed in Figure 2.

Figure 1:

Correlation between EXPERIENCE core and domain scores and external variables

Note: The shaded squares within the black box represent the correlations between EXPERIENCE core and domain scores and the external variables

Figure 2:

Correlation between EXPERIENCE items and external variables

Note: The shaded squares within the black box represent the correlations between EXPERIENCE items and the external variables

Discussion

We first evaluated the structure of the home-based PPHC EXPERIENCE Measure in this study.(38) Based on the PCA, we revised the initial organization of our items, which was built on prior work that grouped items into traditionally-conceptualized domains of high-quality PPHC,(39, 44–48) into new domains that grouped EXPERIENCE items conceptually into the day-to-day activities that affect families’ experience of caring for an ill child at home. We also evaluated the psychometric properties of EXPERIENCE, noting evidence for the reliability and validity of the core and four domain-specific scores for evaluating home-based PPHC experiences of families receiving home-based PPHC across the U.S. (Appendix Table 4 for revised measure).

To our knowledge, this is the first instrument developed to comprehensively evaluate family-reported home-based PPHC experiences while care is being received. Existing measures of care experiences in adult and pediatric palliative care traditionally survey families after the patient has died.(55–58) While valuable for improving care for future children and families, this approach cannot be responsive to the care needs of children and families currently receiving care. Evaluating care in real time affords PPHC clinicians the opportunity to monitor and respond to child and family needs, and to perceived gaps in care, at the time care is provided.(59–62) Additionally, the EXPERIENCE Measure asks families to consider all members of their child’s care team who work together with them to care for their child at home, which could include hospital- or outpatient-based PPHC teams that support families at home via phone calls, video calls, home visits, or clinic visits. This reflects the reality of how home-based PPHC is often provided in the U.S.(63–65), as well as how family participants conceptualized home-based PPHC in our earlier work, which may strengthen the usability of the instrument in clinical practice (to be evaluated in future work). Third, our findings also suggest that the EXPERIENCE core score may be used to evaluate how families are doing overall, but that domain-level scores may also be valuable for PPHC clinicians to identify domains that may be of particular concern to families; supplemental items can be tailored to the individual needs and circumstances of each family. Finally, EXPERIENCE requires approximately five minutes or less to complete, minimizing the completion burden on busy families.

Several limitations to this study warrant discussion. First, due to recruitment challenges during the COVID-19 pandemic, our sample size was smaller than our initial goal. Following preliminary analyses performed by our study team, however, we determined that stopping recruitment at over 80 participants was adequate to accomplish the study goals. Second, the sociodemographic profile of participants in this study was relatively homogenous, with most participants identifying as White, reporting a college or graduate degree, and less than a third reporting moderate to high levels of financial difficulty. Additionally, only one family completed the measure in Spanish, although several families reported speaking Spanish in their household. While we purposefully recruited diverse participants, our findings are limited in our inability to recruit a large number of families from underrepresented backgrounds. Nevertheless, our sample included families caring for children with various medical diagnoses and receiving different models of home-based PPHC from 15 geographically diverse states across the U.S., several who identified as living in rural areas. In future work, we will work closely with family advisors and community stakeholders on alternative strategies to recruit a larger, more diverse sample, including additional Spanish-speaking families, to gather further evidence for the use of EXPERIENCE in broader and more diverse populations. Third, this instrument has only been evaluated for use with a U.S. sample and will need to be evaluated prior to use in other countries and contexts outside of home-based PPHC in the U.S. Finally, more work is needed to determine the usability of EXPERIENCE in clinical practice. Future work will evaluate the acceptability, feasibility, and preliminary clinical actionability of this instrument from families’ and clinicians’ perspectives (paper in development). Additionally, more work is needed to evaluate the use of EXPERIENCE longitudinally, including the sensitivity of the instrument to change in healthcare services and to fluctuations in the child’s health status longitudinally, as well as how information collected using EXPERIENCE will impact PPHC clinical actions.

This evaluation of the psychometric properties of EXPERIENCE represents the first steps in the development of a system to better support families in communicating their home-based PPHC experiences with their PPHC teams in order to, ultimately, equitably advance the care of children with serious illness and their families at home.

Key Message:

The 23-item EXPERIENCE Measure produces scores that appear to be reliable and valid for use in measuring family-reported home-based pediatric palliative and hospice care experiences in the U.S. Future work will evaluate the usability of EXPERIENCE, the measure’s responsiveness to change over time, and the potential impact of the measure’s use on clinical actions.

Appendix

Study Procedures, Recruitment, and Data Collection Details:

Institutional review board approval was obtained from CHOP. The other clinical sites were not actively engaged in recruitment, data collection, or data analysis (see procedures below); thus, they were determined to not be engaged in human subjects research and, therefore, IRB approval was not required from these sites.

Children’s Hospital of Philadelphia (CHOP):

Eligible family participants at CHOP were identified in collaboration with the clinical pediatric palliative care team (PPC) (Pediatric Advanced Care Team). The research team contacted all participants by phone or email, and interested participants were sent an electronic link by email or text message to complete the study questionnaires via REDCap (Vanderbilt University). Participants provided electronic consent for participant via REDCap.

The Courageous Parents Network (CPN):

CPN is a non-profit organization that provides an online community to support families and clinicians through information, skills, tools, and other resources during a child’s serious illness journey (CPN | Courageous Parents Network). For recruitment through CPN, study information was posted on CPN’s blog and social media pages. If family caregivers were interested in participating, they completed a screening questionnaire to assess their eligibility. If eligible, they were automatically directed to complete the REDCap questionnaire. Although measures (e.g., open-ended text screening questions, reCAPTCHA) were used to filter out illegitimate respondents, we initially received numerous questionnaires from suspected bots and “bad actors.” (66) We therefore revised our procedure and asked interested participants to email the study team directly for a questionnaire link.

Other clinical sites:

The other clinical sites who agreed to share our study information with their patients and families included Johns Hopkins Children’s Center (Baltimore, MD), Children’s Mercy Kansas City (Kansas City, KS), the Mayo Clinic (Rochester, MN), Nemours Children’s Hospital (Wilmington, DE), Agape Care South Carolina (Charleston, SC), University of Pittsburgh Medical Center Children’s Hospital (Pittsburgh, PA), Children’s Hospital of Atlanta (Atlanta, GA), Rady Children’s Hospital (San Diego, CA), C.S. Mott Children’s Hospital (Ann Arbor, MI), and Providence Hospice of Seattle (Tukwila, WA). For recruitment through these hospital and community sites, a primary contact person from each program was identified (e.g., medical director, PPC team manager), who distributed an invitation letter and study brochure to eligible families. Interested families could then scan a QR code on the study brochure and complete the questionnaires directly in REDCap.

For all participants, after the baseline questionnaire was completed, they were emailed or texted a link for a re-test questionnaire 48 hours after the initial completion. Families were compensated $10 for completion of the baseline and $10 for the re-test questionnaire.

Appendix Table 1:

Other Study Measures

Measure	# Items; Scoring	Hypothesized Relationship to EXPERIENCE Measure
Overall satisfaction with care (“Overall, how satisfied are you with your child’s home-based care?”)	1 item; 5-point scale (1 = Completely Dissatisfied; 5 = Completely Satisfied)	Better care experience (higher EXPERIENCE scores) will correlate with higher satisfaction with care (higher satisfaction score) (54, 56)
Desire for Care Improvement (“I would like to see improvement in my child’s home-based palliative or hospice care”)	1 item; 5-point scale (1 = Strongly Disagree; 5 = Strongly Agree)	Better care experience (higher EXPERIENCE scores) will correlate with lower desire to improve care (lower improvement scores) (68)
Kessler-6 Psychological Distress Scale (69)	6 items; Reported as total score (range: 0-24)	Better care experience (higher EXPERIENCE scores) will correlate with lower parental distress (higher Kessler-6 score) (70)
Adapted item from the Family Management Measure – Family Life Difficulty Subscale (71) (“Taking care of our child’s condition is often overwhelming”)	1 item; 5-point scale (1= Strongly Disagree; 5= Strongly Agree)	Better care experience (higher EXPERIENCE scores) will correlate with lower perceived difficulty of family life (higher difficulty score) (72, 73)

In addition to the measures in the table below, demographic information was collected about family participants’ age, race, ethnicity, marital status, employment status, educational attainment, language preference, and perceptions of financial difficulty. Participants also completed a questionnaire about their child(ren) who was receiving home-based PPHC, including age, complex chronic condition,(67) length of time receiving home-based PPHC, and insurance status.

Appendix Table 2:

Rotated Factor Loadings for Top Four Components

Item	Component 1	Component 2	Component 3	Component 4
Opinions	0.07	0.49	−0.23	0.18
Child’s Needs	0.53	0.18	−0.14	−0.04
On Call	−0.04	−0.02	−0.06	0.70
Care Coordination	0.08	0.11	0.04	0.50
Other Providers	0.11	0.35	0.08	0.11
Caregiver Resources	0.52	0.11	0.04	−0.15
Trust	0.17	0.39	0.10	−0.15
Decisions	−0.02	0.48	0.16	−0.09
Parents’ Emotions	0.47	−0.20	0.10	0.17
Hope Prepare	0.37	−0.28	0.14	0.23
Info Decisions	−0.22	0.27	0.30	0.26
Confidence	−0.02	0.08	0.40	0.06
Guidance	−0.01	0.05	0.52	0.00
Strategies Symptoms	0.05	−0.06	0.57	−0.09

^*Shaded boxes represent loadings >0.30

Appendix Table 3:

EXPERIENCE Measure Domain and Item Summary (Retest)

Domain: Family’s Needs		Test-Retest for Domain (ICC): 0.59
#	Core Domain Items	N	Mean	SD	Min	Max
1	I have enough resources to support my needs as my child’s caregiver.	52	3.96	0.95	2	5
2	I can hope for the best possible outcome for my child’s health and also feel prepared if that outcome doesn’t happen.	52	4.13	0.74	2	5
3	My feelings and emotions, including fear, worry, sadness, and hope, are cared for.	51	3.84	0.99	1	5
4	All of my child’s needs are considered by my child’s care providers.	53	4.09	0.99	1	5
Domain: Family-Care Team Relationship		Test-Retest for Domain (ICC): 0.68
#	Core Domain Items	N	Mean	SD	Min	Max
5	Overall, I trust my child’s care providers.	53	4.62	0.53	3	5
6	I feel comfortable sharing my opinions and concerns about my child with my child’s care providers.	53	4.77	0.47	3	5
7	I work together with my child’s care providers to make decisions about my child’s medical care at home.	53	4.53	0.63	3	5
8	My child’s care providers work together to support our family’s goals for my child’s care at home.	53	4.25	0.90	2	5
Domain: Physical Care of Child		Test-Retest for Domain (ICC): 0.76
#	Core Domain Items	N	Mean	SD	Min	Max
9	I have enough information to make informed health care decisions about my child’s care at home.	53	4.45	0.64	3	5
10	I feel confident in managing my child’s medical care at home.	53	4.30	0.75	2	5
11	I have the guidance needed to care for my child at home.	53	4.42	0.66	3	5
12	I have the information and strategies to effectively manage my child’s pain and other physical symptoms at home.	52	4.17	0.81	2	5
Domain: Care Management		Test-Retest for Domain (ICC): 0.58
#	Core Domain Items	N	Mean	SD	Min	Max
13	I am able to get in contact with my child’s care providers when I need them	53	4.51	0.64	2	5
14	I have a provider who can help me coordinate or organize my child’s care while my child is at home.	53	4.17	0.89	1	5
Supplemental Items		N	Mean	SD	Min	Max
S1	My child’s physical symptoms are treated so that my child has as good a quality of life as possible.	52	4.33	0.94	1	5
S2	My goals for my child’s overall health and well-being are supported.	47	4.36	0.74	2	5
S3	My child has opportunities to express feelings, such as fears, worries, and hopes.	17	4.18	0.81	3	5
S4	My other children’s feelings and emotions are cared for.	35	3.71	0.99	2	5
S5	I can talk about my child’s end of life with my child’s care providers.	34	4.35	0.73	2	5
S6	I can talk with my child’s care providers about my child’s last weeks of life and what that time may be like.	23	3.78	0.95	2	5
S7	My home is adapted to support my child’s current care needs.	48	3.69	1.01	2	5
S8	The nurses have the knowledge, skills, and experience to care for my child at home.	41	4.34	0.82	1	5
S9	The doctors and nurse practitioners have the knowledge, skills, and experience to care for my child at home.	41	4.37	0.73	2	5

Appendix Table 4:

Revised EXPERIENCE Questionnaire

Domain: Family’s Needs
#	Core Domain Items	Strongly Disagree	Disagree	Neutral	Agree	Strongly Agree
1	I have enough resources to support my needs as my child’s caregiver.	□	□	□	□	□
2	I can hope for the best possible outcome for my child’s health and also feel prepared if that outcome doesn’t happen.	□	□	□	□	□
3	My feelings and emotions, including fear, worry, sadness, and hope, are cared for.	□	□	□	□	□
4	All of my child’s needs are considered by my child’s care providers.	□	□	□	□	□
Domain: Family-Care Team Relationship
#	Core Domain Items	Strongly Disagree	Disagree	Neutral	Agree	Strongly Agree
5	Overall, I trust my child’s care providers.	□	□	□	□	□
6	I feel comfortable sharing my opinions and concerns about my child with my child’s care providers.	□	□	□	□	□
7	I work together with my child’s care providers to make decisions about my child’s medical care at home.	□	□	□	□	□
8	My child’s care providers work together to support our family’s goals for my child’s care at home.	□	□	□	□	□
Domain: Physical Care of Child
#	Core Domain Items	Strongly Disagree	Disagree	Neutral	Agree	Strongly Agree
9	I have enough information to make informed health care decisions about my child’s care at home.	□	□	□	□	□
10	I feel confident in managing my child’s medical care at home.	□	□	□	□	□
11	I have the guidance needed to care for my child at home.	□	□	□	□	□
12	I have the information and strategies to effectively manage my child’s pain and other physical symptoms at home.	□	□	□	□	□
Domain: Care Management
#	Domain Items	Strongly Disagree	Disagree	Neutral	Agree	Strongly Agree
13	I am able to get in contact with my child’s care providers when I need them	□	□	□	□	□
14	I have a provider who can help me coordinate or organize my child’s care while my child is at home.	□	□	□	□	□

Supplemental Items		Strongly Disagree	Disagree	Neutral	Agree	Strongly Agree	Other
S1	My child’s physical symptoms are treated so that my child has as good a quality of life as possible.	□	□	□	□	□	My child does not currently need this type of care
S2	My goals for my child’s overall health and well-being are supported.	□	□	□	□	□	My child does not currently need this type of care
S3	My child has opportunities to express feelings, such as fears, worries, and hopes.	□	□	□	□	□	My child is too young or has an illness or disability that prevents participation in this type of support
S4	My other children’s feelings and emotions are cared for.	□	□	□	□	□	I do not have other children who need this type of support
S5	I can talk about my child’s end of life with my child’s care providers.	□	□	□	□	□	Our family currently does not need this type of support
S6	I can talk with my child’s care providers about my child’s last weeks of life and what that time may be like.	□	□	□	□	□	Our family currently does not need this type of support
S7	My home is adapted to support my child’s current care needs.	□	□	□	□	□	My child’s current care needs do not require my home to be adapted
S8	The nurses have the knowledge, skills, and experience to care for my child at home.	□	□	□	□	□	My child does not currently have/need this type of support
S9	The doctors and nurse practitioners have the knowledge, skills, and experience to care for my child at home.	□	□	□	□	□	My child does not currently have/need this type of support

This questionnaire contains 23 statements about your experiences with caring for your child at home during the last month (or less, if you have not been at home for a full month).

Please mark how strongly you agree or disagree with each statement, or mark that the item doesn’t apply to your child and family.

For statements that ask about your child’s care team, think about all the members of the care team who work together with you to care for your child at home.

Are there other issues or concerns that you have that the statements above did not address?

Please let us know by writing down what those issues or concern are. (Optional)