Palliative Care Experience Research Articles

Accessibility and Quality of Palliative Care—Experience in Primary Health Care

Background and Objectives: Palliative care is a very important part of medicine, aimed at ensuring an improvement in quality of life and a reduction in distressing symptoms in patients with serious, incurable, progressive diseases. The issues of the accessibility and quality of these services should be a focus for health policymakers and researchers, although it is acknowledged that a significant portion of the public has not heard about this service. For this reason, it is important to investigate the experience of the accessibility and quality of palliative care services in primary healthcare facilities. Materials and Methods: A quantitative study was conducted in institutions providing outpatient and inpatient palliative care services. A total of 784 patients and 219 family members participated in the study. Participants expressed their opinions through a questionnaire containing 24 statements, to which they responded by indicating their level of agreement on a Likert scale. The collected data were analyzed using statistical analysis software. Results: Palliative care services are widely available in large cities, but their accessibility is very limited in small towns and rural areas. Patients and their families are not familiar with the concept of palliative care, often equating it with the provision of treatment and nursing services, and they see the support of clergy as unnecessary. Although patients and their families rate the quality of the services received positively, they note shortcomings related to communication among staff. Conclusions: Palliative care services are provided within the primary healthcare system by specialists with qualifications regulated by legislation; however, patients do not see the need to receive assistance from clergy members. Based on the study results, it can be concluded that in Lithuania, the accessibility of palliative care is ensured in larger cities but is insufficient in smaller towns and rural areas. Patients tend to rate indicators reflecting the quality of palliative care services positively; however, they are not convinced that these services improve their quality of life.

Attitudes Toward Medical Assistance in Dying Among Swedish Palliative Care Professionals.

Background: The debate over legalizing medical assistance in dying (assisted dying) is ongoing, also in Nordic countries such as Sweden where assisted dying is illegal. A 2020 survey by the Swedish Medical Association highlighted varied perspectives, with 41% of physicians supporting and 34% opposing legalization. Professionals in palliative care were more negative toward it. Objective: To assess attitudes toward the legalization of, and the need for education about, assisted dying among Swedish palliative care professionals. Study Design: A survey with 19 closed- and 2 open-ended questions was administered to the participants of the 2023 Swedish National Conference on Palliative Care (including physicians, nurses, assistant nurses, administrators, and researchers). Results: Of the 866 conference participants who were invited, 444 (51%) participated. Predominantly, the cohort comprised women (89%); 60% were nurses and 17% physicians. The results showed that 38% opposed euthanasia, 36% supported it, and 26% remained undecided, with similar findings regarding physician-assisted suicide. There was a significant trend of increasingly negative attitudes with age and experience in palliative care (p < 0.01). Physicians emerged as the group most opposed to euthanasia (80%), whereas assistant nurses were the most positive, with 13% opposing legalization, and 33% of the nurses opposed euthanasia. The open-ended questions revealed thoughts regarding the complexity of the issue and the need for further discussion and education. Conclusion: In Sweden, where euthanasia and physician-assisted suicide is illegal, more than one-third of palliative care professionals were in favor of legalizing these practices while one-fourth were undecided, these proportions differed markedly between professions. Further, we uncovered a significant need for further discussion and education.

Beyond treatment: Understanding family experiences in pediatric palliative care.

This study aimed to explore the multifaceted experiences of families with children and adolescents enrolled in the pediatric palliative care (PPC) program, with a particular emphasis on understanding their perspectives regarding the quality and effectiveness of care provided. Our goals included exploring emotional, social, and practical caregiving dimensions within the PPC context to address gaps and find areas for improvement. The objectives encompassed an exploration of the perceived effects on physical, emotional, social, and spiritual dimensions, an investigation into pre-PPC inclusion experiences, and an identification of limitations and potential areas for enhancement within the program. Using a qualitative descriptive approach with a phenomenological lens, we engaged 6 primary caregivers through semi-structured interviews, employing theoretical convenience sampling. Analysis involved meticulous transcription, alphanumeric coding, and thematic categorization using Atlas.ti 8.0® software. Consistently echoed across interviews were the positive impacts on family dynamics, characterized by a sense of tranquility, enhanced patient care, and substantial caregiver support. Emotional well-being improvements were marked by elevated mood, reduced anxiety, and a restored sense of normalcy. Noteworthy challenges identified encompassed communication gaps among health-care professionals, limited-service availability, and perceived constraints in home care. The study underscores the profound positive influence of the PPC program on the perceived quality of life for families navigating the complexities of caring for children with life-limiting illnesses. The findings underscore the paramount importance of holistic, family-centric care and underscore the imperative to address caregiver needs comprehensively to mitigate the risk of burnout. The identified challenges serve as signposts for refining communication strategies, expanding service provisions, and augmenting support structures within the PPC program. Overall, the study highlights the profound positive impact of the PPC program on family well-being, while also identifying areas for program enhancement, particularly in communication and service availability.

The centrality of nursing in realizing high quality palliative care: Exploring Canada’s framework on palliative care priorities

BackgroundFollowing an earlier mixed-method survey in which we asked stakeholders to report on their perceptions of the progress made in relation to Canada’s Framework on Palliative Care and Action Plan, the purpose of this study was to conduct an in-depth qualitative exploration of the factors influencing that progress, or lack thereof.MethodsThis was a qualitative interview study conducted in Canada. Inclusion criteria included experience with palliative care in Canada in a professional or volunteer capacity. Interviews were conducted by telephone using an interview guide that asked specific questions in relation to the Framework on palliative care priorities (e.g., education, caregiver support, and equitable access). Data was analyzed using qualitative descriptive methods.ResultsThirty-five diverse stakeholders with extensive experience in palliative care were interviewed. In relation to palliative education, participants indicated that although there were excellent palliative care resources available across the country there was further need for embedding palliative care in undergraduate education and for mentored opportunities to engage in care across diverse contexts. The identification, development, and strategic positioning of champions was an important strategy for improving palliative care knowledge and capacity. The development of standard competencies was viewed as an important step forward; although, there was a need to include more members of the care-team and to create pathways for life-long learning. In relation to support for family caregivers, even as participants cited numerous community-based resources offered by not-for-profit organizations, they described significant barriers including a shortage of in-home support, lack of understanding of what caregivers do, and policy-based contractual and privacy issues. In relation to palliative care access, participants described a nurse-centered, consult-based, multi-site and multi-provider model of care that was facilitated by technology. Barriers to this model were systemic healthcare issues of siloed, fragmented, and for-profit care.ConclusionParticipants in this study had clear insights into the factors that would support or impede progress to the development of palliative care in Canada. Some of those factors were achievable within current health and educational systems. Other factors were going to require longer term and more comprehensive solutions.

Exploring nurses’ experiences in palliative care: a qualitative study in Indonesia

Exploring nurses’ experiences in palliative care: a qualitative study in Indonesia

How do palliative care clinicians use their emotions during end-of-life encounters?

Abstract Background Palliative care clinicians are regularly exposed to emotionally laden end-of-life care situations. Until now, the use of their emotions during palliative care consultations has remained understudied. We aimed to develop a theory to understand how palliative care clinicians use their emotions. Methods Qualitative data were collected via individual interviews held with different types of palliative care clinicians across the world (countries were selected based on their Quality of Death Index ranking). We used a social constructivist grounded theory approach to analyze the data using a constant comparative method. Results We held interviews with 21 palliative care clinicians (5 nurses, 11 physicians, 2 psychologists, and 3 social workers) from 10 different countries. Fourteen were female. Participants’ average age was 46 and they had 14 or more years of palliative care experience. The mean length of the interviews was 52 minutes. The process of using emotions could be characterized as follows: first, a difficult end-of-life encounter (e.g. ethical dilemmas or conflicts) would trigger a strong emotion in clinicians. Second, clinicians become aware of the specific emotion via its physical or psychological cues. Third, an assessment of the appropriateness of the use of the emotion follows, in which facilitators and barriers (e.g. the level of emotion skills, the view on emotions, or the feeling of safety in the team) interplay, influencing the clinician to act upon a specific emotion or not. Finally, with a specific intent (e.g. to build connection, stimulate patients and relatives to express their feelings, or clarify a point of view) the clinician shares, shows, or expresses the emotion. Conclusions We found that the strong emotions clinicians experience can be used as a valuable resource to provide palliative care. We also identified key steps to aid clinicians reflect on the appropriateness of using certain emotions in patient care. Key messages • Palliative care clinicians’ emotions can be considered as tools to support palliative care provision. • The developed theory shows potential to explore its applicability in other professions that are also regularly confronted with emotionally charged situations.

Depression, anxiety, psychological distress, and perceived social support among Ugandan palliative care providers during the COVID-19 pandemic.

To identify the prevalence of depression, anxiety, and psychosocial distress among Ugandan palliative care providers during the COVID-19 pandemic, measure providers' perceived levels of social support, and identify factors affecting a provider's likelihood of being depressed, anxious, distressed, or perceiving various levels of social support. Data was collected from 123 palliative care providers using an online survey. Depression, anxiety, and psychological distress were measured using the Patient Health Questionnaire-9, the Generalized Anxiety Disorder-7, and the Self-Reporting Questionnaire, respectively. Information on perceived level of social support was gathered through the Multidimensional Scale of Perceived Social Support. The survey also asked about mental health resources available to providers at their place of work and what resources are still needed. Participants ranged in age, gender, religion, marital status, clinical position, and years of experience in palliative care. Results indicate that 20% of respondents show signs of moderate to severe depression, 14% show signs of moderate to severe anxiety, and 33% show signs of psychological distress. Additionally, 50% of respondents reported a low total level of social support. Depression, anxiety, and psychological distress scores were all negatively correlated with perceived social support scores. Over 50% expressed a desire for additional mental health resources at their place of work. In 2021-2022, the severity of depression, anxiety, and psychological distress varied among palliative care providers in Uganda, with some experiencing moderate to severe mental health effects. Higher degrees of depression, anxiety, and psychological distress were correlated with lower levels of perceived social support, highlighting the importance of social support during times of crisis. The results highlight a desire for improved access to mental health resources and will help providers and organizations provide better support and better prepare for future crises.

“The patient as teacher” - thematic analysis of undergraduate medical students’ experiences with an experiential learning project in palliative care

BackgroundExperiential learning holds high potential for medical students’ education in palliative care. At RWTH Aachen University in Germany, medical students can participate in the course “The Patient as Teacher” offering a one-to-one exchange with a terminally ill patient over a period of several weeks complemented with four supervision sessions and writing of a reflective essay. The course had run from 2005 to 2020 before it was paused due to the Covid-19 pandemic. This study aimed to assess the course’s value as a palliative care teaching tool by investigating students’ motivation and experiences over the years 2005–2020.MethodsA stratified sample of 24 essays was taken from all submitted essays (n = 78), eight essays from the years 2005–2009, 2010–2014, and 2015–2020. Subsequently, a thematic analysis of the selected essays was conducted.ResultsThe students felt motivated by the opportunity to gain more experience in palliative care, to improve their communication skills and to decrease insecurities in interaction with terminally ill patients. They learned about the patient’s biography and medical history, and encountered physical, psychological, social, and spiritual dimensions of living with a life-limiting disease. Moreover, they experienced relationship building and communication with a terminally ill patient outside their role as future doctors. Ultimately, they considered their participation as a beneficial experience on both a personal and professional level.ConclusionsThe course “The Patient as Teacher” presents a valuable tool for experiential learning in palliative care, which has elicited an unceasingly positive response among the students who participated over the years. It has facilitated medical students in overcoming insecurities in dealing with terminally ill patients and supported them in further developing their professional identity.

Experience of Integrative Palliative Care at Peking Union Medical College Hospital

Objective To summarize the experience of integrative palliative care at Peking Union Medical College Hospital and provide a reference for promoting the integrative palliative care model. Methods Twenty cases receiving integrative palliative care at Peking Union Medical College Hospital were collected.The clinical characteristics,reasons for initiating integrative palliative care,the process of integrative palliative care,and feedback from these cases were summarized. Results Insomnia (11 cases,55%) and pain (9 cases,45%) were the most common symptoms requiring control in the 20 cases.The integrative palliative care team assisted in medical decision-making for 17 cases (85%),prepared end-of-life for 9 cases (45%),assisted in the transfer for 3 cases (15%),and provided comfort care for all the 20 cases (100%). Conclusions The integrative palliative care model can help alleviate suffering in end-of-life patients and provide support to patients' families and the original medical teams.This model is worth further promotion within class A tertiary hospitals.

A Scoping Review of the Barriers and Facilitators to Clinician Engagement in Hospital-Based Palliative Care in Australian Hospitals.

Background: Current research has shown that inpatient palliative care (PC) services are under-utilized, poorly integrated, and frequently introduced too late during inpatient hospital stays. The aim of this study was to identify a comprehensive list of multi-disciplinary facilitators and barriers to inpatient PC in Australian hospitals through a scoping literature review. Methods: This review identified articles published since 2000 from 3 electronic databases (CINAHL Plus, MEDLINE and Embase), which included discussion of collaboration among non-palliative care clinicians and palliative care professionals in Australian hospitals. We used an inductive approach to identifying key domains of barriers and facilitators. Results: Thirty-four articles met inclusion criteria following full text review. Barriers and facilitators were categorized in 7 domains: (1) Patient concerns, (2) Family concerns, (3) Clinician knowledge, education, and experience in palliative care, (4) Recognition and acceptance of prognosis when a patient was dying or needing end of life treatment, (5) Reconciliation of individual and professional values around PC, (6) Clinician access to resources for PC in the hospital, and (7) Communication between the PC team and ward clinicians. Each domain included potentially substantial barriers to PC delivery and practice. However, given the small sample sizes and specialized settings of many included studies, it was difficult to draw conclusions on the relative significance of different barriers across hospitals. Conclusion: This review identified a number of barriers and facilitators across studies. Subsequent research needs to more comprehensively compare factors impacting PC use in order to improve implementation of PC across hospital settings.

Hospice Administrators' and Providers' Perspectives on Providing Upstream Palliative Care: Facilitators, Barriers, and Policy Prescriptions.

Background: Among patients with serious illness, palliative care before hospice enrollment is associated with improved quality of life, reduced symptom burden, and earlier transitions to hospice. However, fewer than half of eligible patients receive specialty palliative care referrals. As most hospice clinicians and administrators have experience in specialty palliative care, several emerging programs propose engaging hospice clinicians to provide early palliative care. Objective: We sought to identify barriers and facilitators to upstream palliative care. Design: We conducted a key informant qualitative study among hospice administrators and clinicians. Setting/Subjects: We conducted semi-structured interviews with 23 hospice administrators and clinicians in eight states from March to August 2022. We identified participants using snowball and purposive sampling using states that participate in Medicare Advantage's value-based insurance design Model. Results: Respondents indicated that barriers to early palliative care included inadequate staffing and reimbursement. Hospice clinicians providing community-based palliative care can address access barriers and improve transitions to hospice. Respondents expressed desire for payer guidance in identifying eligible patients but were cautious about payers acting as direct palliative care providers. However, payers could facilitate uptake by broadening and specifying coverage of services to include goals of care conversations and symptom management. Routine referrals initiated by objective measures could potentially increase access. Conclusions: Utilizing hospice providers to provide upstream palliative care can increase access, improve outcomes, and ease the transition to hospice.

Interprofessional collaboration during a specialised mobile palliative care service pilot in the rural area of Lucerne.

Interprofessional collaboration in outpatient palliative care is critical to ensuring good quality of care in the home care sector. We investigated facilitators and barriers (FaBs) of interprofessional collaboration among healthcare professionals who participated in a 6-month pilot of a newly implemented specialised mobile palliative care service (SMPCS) in rural Lucerne. This study used a mixed-methods approach to collect (i) qualitative data on FaBs as perceived by nurses and primary care physicians (PCPs), and (ii) quantitative data across the entire interprofessional collaboration using a validated questionnaire expanded with 10 specific questions about the pilot. Identified facilitators of interprofessional collaboration were (i) use of standardised documents, (ii) clear allocation of responsibilities, (iii) regular exchange and clear communication and (iv) consideration of care coordination. Reported barriers were (i) a deficit of knowledge and experience of palliative care among PCPs and (ii) time constraints. This study provides valuable insights into FaBs of interprofessional collaboration in palliative care. Several recommendations can be drawn for how interprofessional collaboration may be optimised. Awareness of FaBs and their consideration in the implementation phase of new services can strengthen the foundation for a successful interprofessional collaboration.

Early Palliative Care Improves Patient and Caregiver Quality of Life.

Patients receiving early palliative care experience improved quality of life, may live longer, and may have earlier referrals to hospice. Caregivers with loved ones receiving early palliative care experience improved communic.

Dark resonance: On the possibility of resonance with death

The concept of resonance, introduced by Hartmut Rosa, denotes a vital relationship to the world and offers a starting point for discussing meaningfulness in peoples’ lives by serving as an antithesis to alienation. An unexplored aspect of the concept is the potential for resonance with death, which Rosa dismisses as an impossibility. This article challenges this view by introducing the term dark resonance, based on the ‘dark turn’ in the philosophy of nature. Dark resonance comes in (at least) two variants, both implying a transcendence of the self: (1) as reunion, an implosion of the self and an inwards movement, and (2) as release, an explosion of the self and an outwards movement. For both variants, the borders between self and environment and between life and death, becomes fuzzy, which also challenges the idea that resonance demands an experiencing subject. These variants are explored through examples from black metal, palliative care and near-death experiences. An implication is that we may need to broaden the scope of what can be seen as desirable ways of connecting to the world and acknowledge that there is potential for resonance also in dark thoughts, or, in some cases, even in death.

Analyzing innovative policies and practices for palliative care in Portugal: a qualitative study

BackgroundCountries with formal policies for palliative care, and advanced and integrated practices in this field, such as Portugal, face challenges in achieving excellence in care, particularly in home-based assistance. Issues include care coordination among providers, confusion regarding the roles of each health care professional in the network, and a lack of monitoring and evaluation of actions. Our objective was to analyze the implementation of palliative care in primary health care in Portugal.MethodsWe conducted a qualitative, descriptive, and exploratory study in Portugal involving health care professionals with experience in palliative care. The data were collected through semistructured interviews and focus groups between March and October 2023. Eighteen health care professionals participated. We used the Alceste software for lexicographic analysis. The research was authorized by an Ethics Committee.ResultsFour classes were identified; classes 1 and 2, comprising 77% of the corpus, addressed the study objectives. Participants highlighted inequitable access, strategic development plans with unattainable short-term goals; and low literacy. They emphasized the importance of legislation, professional training initiatives for generalist palliative care at home, and early referral. Home-based challenges included professionals’ lack of exclusive dedication, absence of 24/7 coverage, and unavailability of capable family caregivers. The networks’ response to hospital admissions and patient transitions from hospital to home, with access to the specialized team, was also inadequate.ConclusionsHealth care professionals aim to increase patients’ time spent at home, reduce emergency department visits, and minimize hospitalizations by leveraging the resources of the national palliative care network. In addition to investments to sustain network implementation and legally guaranteed palliative care rights, the country must focus on measurable indicators for evaluating and monitoring actions, providing better guidance in the short, medium, and long term.

End-of-Life Learning: Exploratory Insights for Enhancing Successful Tertiary Speech Pathology Placements in Australian Palliative Care

Background: In the context of palliative care (PC), individuals often face communication and swallowing challenges that necessitate speech-language pathology (SLP) intervention. However, there are current shortfalls in preparing SLP students for this unique field of practice. While some research addresses theoretical aspects, limited knowledge exists regarding the practical and systemic factors that hinder or facilitate students’ clinical placements in PC. Aims: This study aims to uncover barriers and facilitators in successful PC clinical placements by gathering insights from experienced SLPs working in the field. Method: Eight Australian SLPs, each with over a year of palliative care experience, participated in two focus groups. Qualitative data was analysed using reflexive thematic analysis and inductive coding. Results: The findings identified several key themes and sub-themes related to the role of universities in improving PC placements. Three categories of factors emerged: (i) fixed elements inherent to PC, such as its unique caseload; (ii) flexible elements modifiable by universities, like student preparedness; and (iii) variable elements beyond university control, including student characteristics. Conclusion: This research emphasises the importance of well-prepared SLP students engaging in successful PC placements. Achieving this requires adequate training from universities and support from clinical educators to develop comprehensive clinical competency.

Palliative Care Experiences Among Adults From Underrepresented Racial and Ethnic Groups in the United States: A Scoping Review.

Patients from underrepresented racial and ethnic groups (URGs) in the United States (US) experience disparities in accessing palliative care (PC) at the end of life (EOL). Additionally, little effort has been made to understand their experiences with PC. To identify and synthesize existing literature on PC experiences among adults from URGs in nursing homes, community settings, and hospitals in the US. Guided by the Joanna Briggs Institute methodological recommendation and Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews, we conducted a scoping review. We searched PubMed, EMBASE, CINAHL, Scopus, and ProQuest Dissertations & Theses Global from inception to January 2024. We included five studies representing Hispanic/Latino, American Indian, African/Black American, and Chinese individuals. Data were organized around two themes: navigating PC pathway and choices and practices during PC. Navigating PC pathway theme highlights that despite the several barriers URGs face when accessing PC, they seek PC services due to their limited formal family assistance in managing their chronic conditions and pain. The choices and practices during PC theme emphasize the roles URG family members play in EOL care, the patient's care preferences, and their spiritual practices and beliefs related to EOL care. This scoping review reveals limited literature about URG experiences with PC and highlights the need for more studies to focus on making PC services more accessible to URGs and providing culturally sensitive care to meet the needs of the diverse growing US population.

A 15-year experience in pediatric palliative care: a retrospective hospital-based study

BackgroundThe current Italian scenario of pediatric palliative care (PPC) services is characterized by inadequate coverage of the territory. Therefore, it is important to improve the referral of patients to the most appropriate setting (community care, general PPC, or specialized PPC) and to improve the delivery of PPC care.MethodsAiming at obtaining information about the referrals to the Padua Pediatric Hospice that could help estimate the investments needed to improve the provision of care, a retrospective analysis has been carried out. The rate of proper referral and discharge, the number of patients followed at the hospice, the mortality rate, and the length of follow-up were analyzed, and, when possible, data were stratified by oncological and non-oncological diseases.ResultsThe analysis showed that of the 870 patients referred to the Padua Pediatric Hospice between 2008 and 2022, 76% were affected by non-oncological conditions. 82% of patients referred were taken in charge and most of the remaining patients have been inappropriately referred. The analysis showed a growing number of total referrals, which increased by 195% from 2008 to 2022. An increase in proper referrals and referrals of non-oncological patients was observed alongside a decrease in oncological patient referrals and a trend toward a decrease in discharge rates. A decreased mortality was observed in patients with non-oncological conditions, with only 6% of deceased patients in 2022. Moreover, a longer survival with a median follow-up length of 43 months was observed among patients with non-oncological conditions who were followed up at the Padua Pediatric Hospice for more than 12 months. Conversely, the short survival rate observed for oncological patients suggests that those patients should have been referred to PPC earlier to benefit from palliative care for longer periods.ConclusionsConsidering these data, it is expected that the number of patients needing PPC services will steadily increase in the next years. Hence, there is a need to invest resources to provide the best care delivery model encompassing specific pathways for the transition into adulthood, the establishment of networks within all the Italian regions, and an efficient referral to the more suitable setting of care.

Healthcare workers' knowledge of indicators for a palliative care approach.

Palliative care is an essential element of universal healthcare, yet not all people who need palliative care are able to receive it. One of the barriers to ensuring access for people who require palliative care is the identification of those eligible. This study evaluated healthcare workers' ability to identify patients who are eligible for palliative care based on their training or experience in palliative care. The setting for the study comprised the Heideveld Emergency Centre and Heideveld Community Day Centre in the Cape Metro, Cape Town, South Africa. This study made use of a cross-sectional survey of healthcare workers. Of the 55 participants in this study, most were able to correctly identify patients with cancer and chronic kidney disease as needing palliative care, but less accurate with other organ failure categories, trauma indications, or functional assessment of the patient. Participants who reported previous awareness training reported improved knowledge on the indications for a palliative care approach compared to no prior training. Our cohort was too small to analyse the results statistically. From what was analysed, the ability of healthcare workers to identify a person in need of palliative care could be better; more work is needed on our awareness training and basic training courses to improve this vital step.Contribution:This research highlights the fact that existing training for palliative care needs to be more applicable to the setting and that training of staff with existing courses does make a difference in knowledge.

The Home-Based Experiences of Palliative and Hospice Care for Children and Caregivers (EXPERIENCE) Measure: Evaluation of Psychometric Properties

ContextHome-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. ObjectivesTo 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 United States. MethodsParticipants 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. ResultsEighty-two 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. ConclusionThe 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.