Background: Home-based palliative care (HBPC) is an important aspect of care for patients with moderate to advanced stages of chronic obstructive pulmonary disease (COPD) and their caregivers. HBPC provides symptom management, advanced care planning and goals of care conversations in the home, with the goal of maximizing quality of life and minimizing health care utilization. There is a gap in the knowledge of how the patients with COPD and their caregivers experience HBPC. The overall purpose of this study is to describe which aspects of HBPC were the most meaningful to patients with COPD, and their caregivers.

Methods: Through a descriptive design with narrative analysis methodology, we interviewed COPD patients and their caregivers to investigate their experience of HBPC received in the 30 days post hospitalization for a COPD exacerbation. A thematic analysis was conducted and the patient and caregiver interviews were analyzed in dyad using thematic analysis.

Results: A total of 10 dyads were interviewed. Patients and their caregivers perceived 3 times as many facilitators as barriers of receiving home-based palliative care in the 30 days post hospitalization for a COPD exacerbation. The outcomes of this study provide information that describes the aspects of HBPC that patients and their caregivers found most meaningful.

Conclusion: An understanding of the most meaningful aspects of HBPC from the perspectives of the patients with COPD and their caregivers can be used to inform the development of the best model for HBPC for this patient population.

Download full-text PDF

Source
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7883912PMC
http://dx.doi.org/10.15326/jcopdf.7.4.2020.0144DOI Listing

Publication Analysis

Top Keywords

patients caregivers
16
home-based palliative
12
palliative care
12
copd caregivers
12
patients copd
12
aspects hbpc
12
chronic obstructive
8
obstructive pulmonary
8
pulmonary disease
8
patients
8

Similar Publications

Background: Despite progress made towards SDG 3, sub-Saharan Africa lags behind the rest of the world, accounting for over 50% of global neonatal deaths. The increased number of hospital births in the region has not reciprocated the reduction in neonatal mortality rates. Sick newborns face uncertain journeys from peripheral facilities to specialized centres arriving in suboptimal conditions, which impacts their outcomes, due partly to the scarcity of dedicated neonatal transport services.

View Article and Find Full Text PDF

Electronic and paper delivery of parent proxy and children's report of two scar-specific patient-reported outcome measures (Brisbane Burn Scar Impact Profile and Patient and Observer Scar Assessment Scale): An equivalence study.

Burns

December 2024

Children's Health Research Centre, The University of Queensland, Faculty of Medicine, Herston, Queensland, Australia; Australian Centre for Health Services Innovation (AusHI), Centre for Healthcare Transformation, School of Public Health and Social Work, Queensland University of Technology, Kelvin Grove, Queensland, Australia.

Introduction: The Brisbane Burn Scar Impact Profile (BBSIP) and the Patient and Observer Scar Assessment Scale (POSAS) are used in burn scar assessment to quantify patient health-related quality of life (HR-QoL). These questionnaires were developed using pen-and-paper delivery methods; however, there is a push towards electronic delivery of these questionnaires in both clinical practice and research. Equivalence testing is required to ensure that validity of these paper questionnaires is maintained electronically.

View Article and Find Full Text PDF

Background: Epidermolysis bullosa (EB) comprises a group of genetically and clinically heterogeneous diseases characterized by skin fragility and blistering. EB is incurable, and treatment consists of preventing blisters in addition to painful and time consuming skin care, often performed by the parents, in addition to monitoring other symptoms in cases of severe EB.

Results: The purpose of this study was to explore parental experiences of caring for a child with EB.

View Article and Find Full Text PDF

Clinically validated classification of chronic wounds method with memristor-based cellular neural network.

Sci Rep

December 2024

Department of Electronics and Telecommunications, Politecnico di Torino, 10123, Torino, Italy.

Chronic wounds are a syndrome that affects around 4% of the world population due to several pathologies. The COV-19 pandemic has enforced the need of developing new techniques and technologies that can help clinicians to monitor the affected patients easily and reliably. In this prospective observational study a new device, the Wound Viewer, that works through a memristor-based Discrete-Time Cellular Neural Network (DT-CNN) has been developed and tested through a clinical trial of 150 patients.

View Article and Find Full Text PDF

Outcomes in patients with thrombotic microangiopathy associated with a trigger following plasma exchange: A systematic literature review.

Transfus Apher Sci

December 2024

Alexion, AstraZeneca Rare Disease, 121 Seaport Blvd, Boston, MA 02210, USA. Electronic address:

Plasma exchange (PE) outcomes in patients with trigger-associated thrombotic microangiopathy (TMA) have not been comprehensively reviewed. Embase and MEDLINE® were searched on 03/14/2022 for English language articles published after 2007, alongside a congress materials search (2019-2022; PROSPERO: CRD42022325170). Studies with patients with trigger-associated TMA (excluding thrombotic thrombocytopenic purpura, 'typical' hemolytic uremic syndrome caused by Shiga toxin-producing Escherichia coli, post-partum TMA, and TMAs with known genetic cause) who received PE or plasma infusion (PI) and reported treatment response (including measures), safety, patient-/caregiver-reported outcomes, or economic burden data were examined.

View Article and Find Full Text PDF

Want 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!