“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

Thienprayoon, Rachel; Grossoehme, Daniel H.; Humphrey, Lisa; Pestian, Teresa; Frimpong-Manso, Millicent; Malcolm, Hailey V.; Kitamura, Elizabeth; Jenkins, Rachel; Friebert, Sarah

doi:10.1089/jpm.2019.0418

Cited by 17 publications

(31 citation statements)

References 41 publications

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“…Pediatric palliative and hospice care at home, hereafter referred to as PPHC@Home, is palliative and hospice care provided primarily outside of the hospital, often integrating the care provided by different services in the home, outpatient, hospital, and hospice settings [9,10]. PPHC@Home supports children and families by providing a wide spectrum of services, including pain and symptom management, psychosocial and emotional support for the child and family, on-call services, expressive and other therapies, and care coordination across medical and social service providers and institutions [9][10][11][12][13][14].…”

Section: Introductionmentioning

confidence: 99%

Developing a family-reported measure of experiences with home-based pediatric palliative and hospice care: a multi-method, multi-stakeholder approach

et al. 2021

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Background Many children with serious illnesses are receiving palliative and end-of-life care from pediatric palliative and hospice care teams at home (PPHC@Home). Despite the growth in PPHC@Home, no standardized measures exist to evaluate whether PPHC@Home provided in the U.S. meets the needs and priorities of children and their families. Methods We developed and conducted a preliminary evaluation of a family-reported measure of PPHC@Home experiences using a multi-method, multi-stakeholder approach. Our instrument development process consisted of four phases. Item identification and development (Phase 1) involved a comprehensive literature search of existing instruments, guidelines, standards of practice, and PPHC@Home outcome studies, as well as guidance from a PPHC stakeholder panel. Phase 2 involved the initial item prioiritization and reduction using a discrete choice experiment (DCE) with PPHC professionals and parent advocates. Phase 3 involved a second DCE with bereaved parents and parents currently receiving care for their child to further prioritize and winnow the items to a set of the most highly-valued items. Finally, we conducted cognitive interviews with parents to provide information about the content validity and clarity of the newly-developed instrument (Phase 4). Results Items were compiled predominantly from three existing instruments. Phase 2 participants included 34 PPHC providers, researchers, and parent advocates; Phase 3 participants included 47 parents; and Phase 4 participants included 11 parents. At the completion of Phase 4, the Experiences of Palliative and Hospice Care for Children and Caregivers at Home (EXPERIENCE@Home) Measure contains 22 of the most highly-valued items for evaluating PPHC@Home. These items include “The care team treats my child’s physical symptoms so that my child has as good a quality of life as possible”, “I have regular access to on-call services from our care team”, and “The nurses have the knowledge, skills, and experience to support my child’s palliative or hospice care at home.” Conclusions The EXPERIENCE@Home Measure is the first known to specifically measure family-reported experiences with PPHC@Home in the U.S. Future work will include formal psychometric evaluation with a larger sample of parents, as well as evaluation of the clinical utility of the instrument with PPHC@Home teams.

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Section: Introductionmentioning

confidence: 99%

Developing a family-reported measure of experiences with home-based pediatric palliative and hospice care: a multi-method, multi-stakeholder approach

et al. 2021

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“…Results from this study described being there or being with a patient as a connection based on mutual trust and honesty that evoked altruism and led to caring relationships between the nurse, patient, and their family (Pavlish & Ceronsky, 2009; Furingsten et al, 2015; Kars et al, 2007; Woodgate, 2006). Also described as compassionate behaviors (Anderzen-Carlsson et al, 2012; Furingsten et al, 2015; Monterosso & Kristjanson, 2008; Snaman et al, 2016; Steele et al, 2013; Thienprayoon et al, 2020; Woodgate, 2006), attributes of being there or being with identified in the study included being gentle in approach (Anderson-Carlsson et al, 2012; Furingsten et al, 2015; Steele et al, 2013), allowing patients and their families to safely show and express their feelings (Furingsten et al, 2015; Woodgate, 2006), spontaneous acts of kindness (Monterosso & Kristjanson, 2008; Thienprayoon et al, 2020), being a physical presence of comfort at a difficult time showing emotion and empathic listening (Kars et al, 2007; Pavlish & Ceronsky, 2009; Snaman et al, 2016; Woodgate, 2006), and reassurance (Kars et al, 2007; Steele et al, 2013).…”

Section: Resultsmentioning

confidence: 99%

Nursing Presence in Pediatric Oncology: A Scoping Review

Mcharo

Bally

Spurr

2021

Journal of Pediatric Hematology/Oncology Nursing

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Background: Nursing presence creates meaningful and trusting relationships that facilitate healing for the patient and enhances the nurse's clinical experience. Although nursing presence has been linked to better health outcomes especially in chronic illnesses and end-of-life, little is known about its contribution in pediatric oncology. Purpose: The purpose of this scoping review was to explore how nursing presence is understood and expressed in pediatric oncology. Methods: Arksey and O’Malley’s (2005) framework was used to guide the review, with Clarke and Braun’s (2013) thematic analysis process used for collating, summarizing, and reporting the results. Key search terms were developed for searches between January 1999 and July 2020 in CINAHL, MEDLINE, and Psych INFO databases. Initially, 4,357 studies were identified with a final sample of nine articles meeting specific inclusion and exclusion criteria. Gray literature retrieved from the search was used to inform the review. Findings: Most notably, there is a limited understanding of nursing presence in pediatric oncology setting. However, findings revealed five themes that can be identified with nursing presence: Being With or Being There, Therapeutic Relationships, Communication, Family-centered Approach, and Perceived Outcomes of Nursing Presence. Nurses in pediatric oncology are in an ideal position to provide nursing presence in order to improve the quality of care in pediatric oncology settings. Discussion: There is a need to establish a comprehensive evidence-based understanding of the construct of nursing presence in pediatric oncology that health care providers can utilize to enhance their clinical practice and health research.

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“…Overall, family impact scores were low at time of hospice enrollment in this study (meaning poor family wellness) with some improvement in family function over time. This may hint at the “compassionate care” benefit families receive from interdisciplinary home‐based hospice teams companioning with the family in anticipatory grief, legacy making, and open communication 48 . Because family caregivers play a central role in the care of a patient receiving home‐based hospice care, family caregiver support is a core function of pediatric end‐of‐life care 49 .…”

Section: Discussionmentioning

confidence: 99%

Homestead together: Pediatric palliative care telehealth support for rural children with cancer during home‐based end‐of‐life care

Weaver

Shostrom

Neumann

et al. 2021

Pediatric Blood & Cancer

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Background Children with terminal cancer and their families describe a preference for home‐based end‐of‐life care. Inadequate support outside of the hospital is a limiting factor in home location feasibility, particularly in rural regions lacking pediatric‐trained hospice providers. Methods The purpose of this longitudinal palliative telehealth support pilot study was to explore physical and emotional symptom burden and family impact assessments for children with terminal cancer receiving home based‐hospice care. Each child received standard of care home‐based hospice care from an adult‐trained rural hospice team with the inclusion of telehealth pediatric palliative care visits at a scheduled minimum of every 14 days. Results Eleven children (mean age 11.9 years) received pediatric palliative telehealth visits a minimum of every 14 days, with an average of 4.8 additional telehealth visits initiated by the family. Average time from enrollment to death was 21.6 days (range 4‐95). Children self‐reported higher physical symptom prevalence than parents or hospice nurses perceived the child was experiencing at time of hospice enrollment with underrecognition of the child's emotional burden. At the time of hospice enrollment, family impact was reported by family caregivers as 46.4/100 (SD 18.7), with noted trend of improved family function while receiving home hospice care with telehealth support. All children remained at home for end‐of‐life care. Conclusion Pediatric palliative care telehealth combined with adult‐trained rural hospice providers may be utilized to support pediatric oncology patients and their family caregivers as part of longitudinal home‐based hospice care.

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“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

Cited by 17 publications

References 41 publications

Developing a family-reported measure of experiences with home-based pediatric palliative and hospice care: a multi-method, multi-stakeholder approach

Developing a family-reported measure of experiences with home-based pediatric palliative and hospice care: a multi-method, multi-stakeholder approach

Nursing Presence in Pediatric Oncology: A Scoping Review

Homestead together: Pediatric palliative care telehealth support for rural children with cancer during home‐based end‐of‐life care

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