Tinjauan sistematis: Efektifitas Palliative Home Care untuk Pasien dengan HIV/AIDS

1970 ◽  
Vol 5 (1) ◽  
Author(s):  
Linlin Lindayani ◽  
Nenden Nur Asriyani Maryam
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
Palliative Medicine ◽  
Cochrane Library ◽  
Palliative Home Care ◽  
Hiv Aids

Asuhan palitif untuk pasien dengan HIV/AIDS merupakan elemen inti dari asuhan pasien dengan HIV/AIDS. Asuhan paliatif yang berbasis home care saat ini menjadi elemen penting yang digunakan di berbagainegara. Akan tetapi, tidak ada studi atau tinjauan sebelumnya yang menganalisis efektifitas dari asuhanpaliatif yang berbasis home care pada pasien dengan HIV/AIDS. Tujuan dari tinjauan sistematik ini adalahuntuk mengevaluasi efektivitas Palliative Home Care untuk pasien dengan HIV/AIDS terhadap nyeri,pengendalian gejala, meningkatkan kualitas hidup, meningkatkan kepuasan asuhan, dan efektivitas biaya.Pencarian awal terbatas dilakukan di MEDLINE dan CINAHL. Kedua database tersebut dipilih denganpertimbangan bahwa keduanya merupakan database terbesar di bidang kesehatan dan kedokteran. Kemudiastrategi pencarian lainnya dilakukan pada database lain meliputi: Cochrane Library, UpToDate, Ovid, AIDSCare, Journal of Palliative Care, dan Journal of Palliative Medicine. Studi yang diterbitkan dalam Bahasa Inggrisdan tahun 2000-2016 dipertimbangkan untuk dimasukkan dalam tinjauan ini. Data diekstrak oleh penulis dandiringkas menggunakan alat ekstraksi data dari JBI (Joanna Briggs Institute). Kami menemukan 4 studi yangmasuk kedalam kriteria tinjauan kami, satu studi randomizes control trial dan tiga studi prospectively control.Hasil dari tinjauan ini menunjukkan bahwa Palliative Home Care terbukti efektif dalam mengontol nyeridan gejala-gelaja lain, mempertahankan dan meningkatkan kualitas hidup pasien, tingginya kepuasan daripasien dan kelurga terhadap asuhan Palliative Home Care berkisar 93% - 96% dan lebih cost-effectivenessdibandingkan dengan Hospital-Based Palliative Care. Dengan demikian, penting untuk mengembangkanPalliative Home Care untuk pasien dengan HIV/AIDS terutama untuk negara dengan sumber daya yang terbatas.

scholarly journals Ethical sensitivity and perceptiveness in palliative home care through co-creation

2019 ◽  
Vol 27 (2) ◽  
pp. 446-460
Author(s):  
Jessica Hemberg ◽  
Elisabeth Bergdahl
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Home Care ◽  
Future Research ◽  
Main Theme ◽  
Ethical Sensitivity ◽  
Ethical Perspective ◽  
Palliative Home Care ◽  
Dying Patients

Background: In research on co-creation in nursing, a caring manner can be used to create opportunities whereby the patient’s quality of life can be increased in palliative home care. This can be described as an ethical cornerstone and the goal of palliative care. To promote quality of life, nurses must be sensitive to patients’ and their relatives’ needs in care encounters. Co-creation can be defined as the joint creation of vital goals for patients through the process of shared knowledge between nurses, patients and their relatives. Aim: The aim of this study was to explore nurses’ experiences of caring encounters and co-creation in palliative home care from an ethical perspective. Research design, participants, and research context: A hermeneutical approach was used. The material consisted of texts from interviews with 12 nurses in a home care context. The method was inspired by thematic analysis. Ethical considerations: Informed consent was sought from the participants regarding study participation and the storage and handling of data for research purposes. Findings: An overall theme, a main theme and four sub-themes emerged. Through ethical sensitivity and perceptivity, nurses can balance their actions in the moment and change their nursing care actions according to the patient’s wishes through co-creation in encounters. Here the time is crucial, as the time needed is unique to each patient. Discussion: The themes together can be considered prerequisites for good palliative home care. If nurses fail to be sensitive and perceptive in encounters with dying patients, good palliative home care cannot be achieved. Ethical sensitivity and perceptiveness can also be considered a part of nurses’ ethical competence. Conclusion: Patients’ dignity can be preserved through ethical sensitivity and perceptiveness, which is fundamental for good palliative care. Co-creation from patients’ perspectives should be the focus of future research.

scholarly journals Gastrointestinal Symptoms in Children With Life-Limiting Conditions Receiving Palliative Home Care

2021 ◽  
Vol 9 ◽  
Author(s):  
Holger Hauch ◽  
Peter Kriwy ◽  
Andreas Hahn ◽  
Reinhard Dettmeyer ◽  
Klaus-Peter Zimmer ◽  
...  
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
Phase 1 ◽  
Gastrointestinal Symptoms ◽  
Phase 2 ◽  
Palliative Home Care ◽  
Asymptomatic Children ◽  
Number Of Patients ◽  
Gi Symptoms ◽  
At Home

Context: Children with life-limiting diseases suffer from gastrointestinal (GI) symptoms. Since the introduction of specialized palliative home care (SPHC) in Germany, it is possible to care for these children at home. In phase 1 of care the aim is to stabilize the patient. In phase 2, terminal support is provided.Objectives: Analysis were performed of the differences between these phases. The causes and modalities/outcome of treatment were evaluated.Methods: A retrospective study was performed from 2014 to 2020. All home visits were analyzed with regard to the abovementioned symptoms, their causes, treatment and results.Results: In total, 149 children were included (45.9% female, mean age 8.17 ± 7.67 years), and 126 patients were evaluated. GI symptoms were common in both phases. Vomiting was more common in phase 2 (59.3 vs. 27.1%; p < 0.001). After therapy, the proportion of asymptomatic children in phase 1 increased from 40.1 to 75.7%; (p < 0.001). Constipation was present in 52.3% (phase 1) and 54.1% (phase 2). After treatment, the proportion of asymptomatic patients increased from 47.3 to 75.7% in phase 1 (p < 0.001), and grade 3 constipation was reduced from 33.9 to 15% in phase 2 (p < 0.05).Conclusion: Painful GI symptoms occur in both palliative care phases but are more common in phase 2. The severity and frequency can usually be controlled at home. The study limitations were the retrospective design and small number of patients, but the study had a representative population, good data quality and a unique perspective on the reality of outpatient pediatric palliative care in Germany.

The glimmering embers: Experiences of hope among cancer patients in palliative home care

2011 ◽  
Vol 9 (1) ◽  
pp. 43-54 ◽  
Author(s):  
Louise Olsson ◽  
Gunnel Östlund ◽  
Peter Strang ◽  
Eva Jeppsson Grassman ◽  
Maria Friedrichsen
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
Cancer Patients ◽  
Comparative Method ◽  
Healthcare Providers ◽  
Palliative Home Care ◽  
Patients With Cancer ◽  
Core Category ◽  
Sense Of Time ◽  
The Creation

AbstractObjective:The experience of hope among cancer patients in palliative care is important information for healthcare providers, but research on the subject is sparse. The aim of this article was to explore how cancer patients admitted to palliative home care experienced the significance of hope and used hope during 6 weeks throughout the last phase of their life, and to assess their symptoms and hope status during 6 weeks throughout the last phase of their lives.Method:Eleven adult patients with cancer participated in 20 interviews and completed seven diaries. The participants were recruited from two palliative care units in the southeast of Sweden. The method used was Grounded Theory (GT), and analysis was based on the constant comparative method.Results:The core category, glimmering embers, was generated from four processes: (1) The creation of “convinced” hope, with a focus on positive events, formed in order to have something to look forward to; (2) The creation of “simulated hope,” including awareness of the lack of realism, but including attempts to believe in unrealistic reasons for hope; (3) The collection of and maintaining of moments of hope, expressing a wish to “seize the day” and hold on to moments of joy and pleasure; and (4) “Gradually extinct” hope, characterized by a lack of energy and a sense of time running out.Significance of results:The different processes of hope helped the patients to continue to live when they were close to death. Hope should be respected and understood by the professionals giving them support.

Palliative Outpatient Care in Children with Hematologic Malignancies Compared to Solid Tumors

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 5977-5977
Author(s):  
Michaela Kuhlen ◽  
Jessica I Hoell ◽  
Gabriele Gagnon ◽  
Stefan Balzer ◽  
Arndt Borkhardt ◽  
...  
Keyword(s):  
Palliative Care ◽  
T Cell ◽  
Home Care ◽  
Solid Tumors ◽  
Cell Lymphoma ◽  
Home Visits ◽  
Hematologic Malignancies ◽  
Home Setting ◽  
Palliative Home Care ◽  
Single Child

Abstract Background: The palliative care needs of children with cancer strongly depend on tumor entity and localization. However, little is known about the needs of children with hematologic malignancies (HM), as a much larger body of publications deals with the needs of children with solid tumors. Methods: Patient data were extracted from the database of one of the largest pediatric palliative care teams (PPCT) in Germany. Information included demographic data, diagnoses, patient contacts, symptoms, and medications. Children with HM were compared to other malignancies using bivariate analyses. Results: Between 01/2013 and 05/2016, the PPCT cared for a total of 178 patients. Of the 58 children with cancer (3 bone tumors, 25 brain tumors, 6 neuroblastomas, 9 soft tissue sarcomas, 9 other solid tumors), 6 (10.3%) had a hematologic malignancy (2 acute lymphoblastic leukemia, 2 acute myeloid leukemia, 1 T-cell lymphoma, 1 Burkitt lymphoma). Two patients underwent hematopoietic stem cell transplantation. Median age of patients with HM at the beginning of PCT was 12.1 years (range 5.4-18.9 years), 5 children were male. The number of children with HM cared for in the home setting was likely low due to the fact that most children with relapsed or refractory leukemia die during intensive chemotherapy and are thus still cared for in hospital. Time from start of palliative home care to death was the same in children with HM compared to non HM (54 vs. 53 days in care), although the range of days in palliative care was larger in children with non HM (1 to 226 days) compared to children with HM (10 to 116 days). The number of home visits was equal (9.7 vs. 9.4) as was the number of home visits per days in care (0.18 vs. 0.18). In both patient groups, most patients died at home or in hospice. The leading symptoms in children with HM were weakness and anxiety, whereas the most frequently reported symptom in patients with non HM was difficulty to move around (i.e. walk). Other frequently reported symptoms in non HM were neurological and gastrointestinal problems. In children with non HM, the occurring symptoms were much more variable. Mucosal bleeding, hematoma and/or petechiae were recurring problems in children with leukemia requiring platelet transfusions in the home setting, however, not a single child developed massive external hemorrhage. More children with non HM needed morphine-based pain medication (33% vs. 54%). Overall, less drugs for symptom control either regular or on demand medication were needed in children with HM. All patients with HM were continued on palliative chemotherapy. Although anti-infectious prophylaxis was discontinued at the beginning of palliative home care, sepsis did not occur in any child. Four of the HM patients died due to disease-related progressive weakness, one through an acute event (most likely intracranial hemorrhage), and one patient with a T-cell lymphoma and a large mediastinal mass died during palliative sedation. Conclusions: Children with hematologic malignancies who are referred to outpatient palliative care appear to have an equal length of care compared to other cancer patients. A lower number of medications (including morphine-based drugs) is necessary, however transfusion rates are higher. As might have been a fear of both parents and treating physicians, not a single child developed massive external hemorrhage. Better knowledge about the special symptoms and needs of children with hematologic malignancies will enable PPCTs to provide best possible care. Disclosures No relevant conflicts of interest to declare.

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