Dataset Information

The Art Therapy Experiences of Patients and Their Family Members in Hospice Palliative Care.

ABSTRACT:

Purpose

In this study, the researchers closely investigated the psychosocial problems faced by terminal cancer patients and their family members in hospice palliative care units.

Methods

The investigators conducted four sessions of art therapy intervention programs for the terminal cancer patients and their family members, carried out in-depth interviews about the influence of the cancer experience on their family function and quality of life, and analyzed their experiences using grounded theory methodology.

Results

After providing autonomous written informed consent, six pairs of terminally ill cancer patients and their family members, accounting for a total of 17 participants with the inclusion of additional family members who took part sporadically, took part in the art therapy intervention and interviews. The raw data, in the form of verbatim records, were analyzed according to the procedures of grounded theory (open, axial, and selective coding). Through these processes, a total of 154 concepts, 56 subcategories, and 13 categories were identified. Families were classified into four types according to their family function, quality of life, and attitude toward death. Though the art therapy intervention, patients and their family members experienced three stages over time.

Conclusion

This research focused on essential aspects of the family relationships and the art therapy experiences of terminal cancer patients and their family members through an art therapy intervention in the context of hospice palliative care. Based on these observations, the researchers constructed a theoretical rationale for art therapy interventions delivered to patients and their family members in the process of hospice palliative care.

SUBMITTER: Park S

PROVIDER: S-EPMC10332731 | biostudies-literature | 2020 Dec

REPOSITORIES: biostudies-literature

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Publications

The Art Therapy Experiences of Patients and Their Family Members in Hospice Palliative Care.

Park Sungeun S Song Hyunjoo H

Han'guk Hosup'isu Wanhwa Uiryo Hakhoe chi = The Korean journal of hospice and palliative care 20201201 4

<h4>Purpose</h4>In this study, the researchers closely investigated the psychosocial problems faced by terminal cancer patients and their family members in hospice palliative care units.<h4>Methods</h4>The investigators conducted four sessions of art therapy intervention programs for the terminal cancer patients and their family members, carried out in-depth interviews about the influence of the cancer experience on their family function and quality of life, and analyzed their experiences using ...[more]

PMID: 37497468

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Project description:ObjectiveEven though more than 25% of Americans die in nursing homes, end-of-life care has consistently been found to be less than adequate in this setting. Even for those residents on hospice, end-of-life care has been found to be problematic. This study had 2 research questions; (1) How do family members of hospice nursing home residents differ in their anxiety, depression, quality of life, social networks, perceptions of pain medication, and health compared with family members of community dwelling hospice patients? (2) What are family members' perceptions of and experiences with end-of-life care in the nursing home setting?MethodsThis study is a secondary mixed methods analysis of interviews with family members of hospice nursing home residents and a comparative statistical analysis of standard outcome measures between family members of hospice patients in the nursing home and family members of hospice patients residing in the community.ResultsOutcome measures for family members of nursing home residents were compared (n = 176) with family members of community-dwelling hospice patients (n = 267). The family members of nursing home residents reported higher quality of life; however, levels of anxiety, depression, perceptions of pain medicine, and health were similar for hospice family members in the nursing home and in the community. Lending an understanding to the stress for hospice family members of nursing home residents, concerns were found with collaboration between the nursing home and the hospice, nursing home care that did not meet family expectations, communication problems, and resident care concerns including pain management. Some family members reported positive end-of-life care experiences in the nursing home setting.ConclusionThese interviews identify a multitude of barriers to quality end-of-life care in the nursing home setting, and demonstrate that support for family members is an essential part of quality end-of-life care for residents. This study suggests that nursing homes should embrace the opportunity to demonstrate the value of family participation in the care-planning process.

Project description:BackgroundMany 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.MethodsWe 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).ResultsItems 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."ConclusionsThe 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.

Project description:ImportanceExpansive growth in the US hospice market has been driven almost exclusively by an increase in for-profit hospices. Prior research found that, in contrast to not-for-profit hospices, for-profit hospices focus on delivering care to patients in nursing homes, provide fewer nursing visits, and use less skilled staff. However, prior studies have not reported on the associations of these differences in care patterns with hospice care quality. Patient- and family-centeredness is a core element of hospice care quality that is measured through surveys of care experiences.ObjectiveTo examine whether differences in profit status are associated with family caregivers' reports of hospice care experiences and assess factors that may be associated with observed differences in care experiences by profit status.Design, setting, and participantsConsumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey data from 653 208 caregiver respondents, reflecting care received from 3107 hospices between April 2017 and March 2019, were used for a cross-sectional examination of hospice care experiences by profit status. Data analysis was performed from January 2020 to November 2022.Main outcomes and measuresOutcomes were case-mix-adjusted and mode-adjusted top-box scores for 8 measures of hospice care experiences, including communication, timely care, symptom management, and emotional and religious support, as well as a summary score averaging across measures. Linear regression examined the association between profit status and hospice-level scores, adjusting for other organizational and structural hospice characteristics.ResultsThere were 906 not-for-profit and 1761 for-profit hospices with mean (SD) time in operation of 25.7 (7.8) years and 13.8 (8.0) years, respectively. Mean (SD) decedent age at death was 82.8 (2.3) years, similar for not-for-profit and for-profit hospices. The mean proportion of patients who were Black, Hispanic, and White was 4.9%, 0.9%, and 91.4% for not-for-profit hospices and 9.0%, 2.2%, and 85.4% for for-profit hospices, respectively. Family caregivers reported worse care experiences at for-profit hospices than at not-for-profit hospices for all measures. Significant differences in average hospice performance by profit status remained after adjusting for hospice characteristics. However, for-profit hospice performance varied, with 548 of 1761 (31.1%) for-profit hospices scoring 3 or more points below the national hospice average of overall performance and 386 of 1761 (21.9%) scoring 3 or more points above the average. In contrast, only 113 of 906 (12.5%) not-for-profit hospices scored 3 or more points below the average, and 305 of 906 (33.7%) scored 3 or more points above the average.Conclusions and relevanceIn this cross-sectional study of CAHPS Hospice Survey data, caregivers of patients receiving hospice care reported substantially worse care experiences in for-profit than in not-for-profit hospices; however, there was variation in reported experiences among both types of hospices. Public reporting of hospice quality is important.

Dataset Information

The Art Therapy Experiences of Patients and Their Family Members in Hospice Palliative Care.

Purpose

Methods

Results

Conclusion

Publications

The Art Therapy Experiences of Patients and Their Family Members in Hospice Palliative Care.

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