Background: As people with intellectual and developmental disabilities (PWIDD) are living longer and experience chronic health conditions, there is greater likelihood that direct care workers (DCWs) will need to provide palliative care services.
Objective: The purpose of this study was to explore DCWs' experience with palliative care and challenges they faced.
Design: This study was an exploratory, descriptive study using qualitative methods.
Setting/subjects: Fifty-four DCWs participated in nine focus groups at five nonprofit community-based organizations that provided residential and day programming services for PWIDD.
Methods: Participants completed a short demographic questionnaire before each of the focus group sessions. In the focus group sessions, participants were asked to describe their experiences of providing palliative care in the workplace and whether they had any difficulties providing palliative care. The focus group discussions were digitally recorded, transcribed professionally, and de-identified for analysis.
Results: Challenges DCWs faced and strategies they employed to meet PWIDD's needs were described using two main themes: "challenges" and "meeting PWIDD's needs." The first theme encompassed difficulties in communicating with clients, anxiety of anticipating death, and limited organizational resources or support. Empathy, extra attention, adaptation in care, and peer support comprised the second theme.
Conclusions: The results indicate some intellectual and developmental disability service agencies and DCWs are not equipped to care for PWIDD with palliative care needs, and DCWs try to meet PWIDD palliative care needs through individual efforts and peer support. These findings can inform training development for DCWs, as well as necessary organizational efforts to support DCWs.
Download full-text PDF |
Source |
|---|---|
| http://dx.doi.org/10.1089/jpm.2017.0555 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Pericapsular nerve group cryoneurolysis as an option for palliative nonoperative management of hip fracture in a patient with end-stage medical comorbidities.
Can J Anaesth
January 2025
Department of Anesthesiology, Perioperative and Pain Medicine, Alberta Health Services and Cumming School of Medicine, University of Calgary, South Health Campus, 4448 Front St. SE, Calgary, AB, T3M 1M4, Canada.
Purpose: We report the use of a pericapsular nerve group (PENG) cryoneurolysis for longer-term analgesia in a patient with a hip fracture and severe medical comorbidities as an alternative to hip fracture surgery.
Clinical Features: A frail but lucid and fully autonomous 97-yr-old female from an assisted living facility sustained a subcapital fracture of her right proximal femur following a ground level fall. She had significant comorbidities including end-stage respiratory disease.
Prognostic factors for overall survival in castration-resistant metastatic prostate cancer treated with docetaxel (MeProCSS): results from a German real-world cohort.
Int Urol Nephrol
January 2025
Department of Urology and Urosurgery, Medical Faculty Mannheim, University Medical Centre Mannheim (UMM), University of Heidelberg, Theodor-Kutzer-Ufer 1-3, 68167, Mannheim, Baden-Württemberg, Germany.
Purpose: To identify prognostic factors for overall survival (OS) and develop a prognostic score in patients receiving docetaxel in metastatic castration-resistant prostate cancer (mCRPC).
Methods: Retrospective analysis was conducted on mCRPC patients treated with docetaxel at a German tertiary center between March 2010 and November 2023. Prognostic clinical and laboratory factors were analyzed using uni- and multivariable logistic regression.
Impact of Immunotherapy on the Care Patterns and Outcomes of Patients with Advanced Hepatocellular Carcinoma.
Clin Res Hepatol Gastroenterol
January 2025
Department of Surgery, Division of Surgical Oncology, Roger Williams Medical Center. 825 Chalkstone Ave, Providence, RI 02908, USA. Boston University School of Medicine. 72 E Concord St, Boston, MA 02118, USA. Electronic address:
Background: Modern immunotherapy with checkpoint inhibitors revolutionized cancer treatment and outcomes. This study aims to demonstrate how immunotherapy has impacted the national landscape of systemic treatment and palliative care in advanced hepatocellular carcinoma (HCC).
Methods: Retrospective cohort selecting patients from the U.
Long-Term Cognitive Outcomes in Adult Patients Receiving Chimeric Antigen Receptor T-Cell Therapies.
Transplant Cell Ther
January 2025
Department of Psychiatry, Massachusetts General Hospital, Boston, MA; USA; Harvard Medical School, Boston MA; USA.
Background: CAR T-cell therapy (CAR-T) is leading to durable responses in patients with cancer but there is concern that cytokine release syndrome (CRS) and neurotoxicity may impact survivors' cognitive function. We assessed long-term cognitive function in CAR-T recipients and examine factors associated with change in cognition over time.
Methods: We assessed perceived cognition (Functional Assessment of Cancer Therapy - Cognition) and neurocognitive performance (standardized neuropsychological battery) in adult patients prior to receiving CAR-T and at 6 month follow-up.
Effective communication is crucial in pediatric palliative care and is essential to facilitate shared decision making between families and the health care team. This study explored the communication preferences of caregivers and health care specialists in Central-Eastern Europe, a region with unique cultural and health care dynamics. Through qualitative interviews, key communication style preferences and barriers were identified.
View Article and Find Full Text PDFWant AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!