The Experience of Patients and Family Caregivers in Managing Pneumoconiosis in the Family Context

The Experience of Patients and Family Caregivers in Managing Pneumoconiosis in the Family Context: An Exploratory Qualitative Study

This is an exploratory qualitative study to understand the needs of patients with pneumoconiosis, and the care-giving experience of their family caregivers. Patients with a confirmed diagnosis of pneumoconiosis for at least 1 year and had registered with the Pneumoconiosis Compensation Fund Board in Hong Kong to receive compensation will be eligible to join this study. The respective family caregivers of these patients, who are 21 years of age or older, assuming the role as the primary caregivers of a pneumoconiosis patient who have registered with the Pneumoconiosis Compensation Fund Board will be invited to join. The nurse will carry out an individual in-depth qualitative interview at patient's home. The nurse will also conduct a home environment assessment. After obtaining the written consent, an interview guide with a list of open-ended questions will be used to elicit the illness experience and self-care needs of the pneumoconiosis patients and the caregiving experience of their family caregivers.

Study Overview

• Status: Completed
• Conditions: Pneumoconiosis
• Intervention / Treatment: Other: No intervention

Detailed Description

Pneumoconiosis is a fibrotic pulmonary disease resulting from workplace exposure to hazardous dusts containing free silica or asbestos, which causes irreversible progressive respiratory impairment among the sufferers. These patients may experience disabling symptoms (e.g. progressive severe dyspnea, chronic and uncontrolled cough, sputum production, fatigue, activity intolerance, decreased mobility and sleep disturbance) despite optimal medical treatment. Pneumoconiosis is considered as a chronic, progressive and incurable disease which requires long-term comprehensive rehabilitation services and support. Effective disease management relies on engaging patients in long-term comprehensive rehabilitation. The overall aim of this study is to explore the illness experience and needs of patients with pneumoconiosis, and the caregiving experience of their respective family caregivers through home visits. The findings will provide important insight into the development of an effective and tailor-made support program for patients with pneumoconiosis in Hong Kong.

This is an exploratory qualitative study to understand the needs of patients with pneumoconiosis, and the care-giving experience of their family caregivers. Patients with a confirmed diagnosis of pneumoconiosis for at least 1 year and had registered with the Pneumoconiosis Compensation Fund Board in Hong Kong to receive compensation will be eligible to join this study. The respective family caregivers of these patients, who are 21 years of age or older, assuming the role as the primary caregivers of a pneumoconiosis patient who have registered with the Pneumoconiosis Compensation Fund Board will be invited to join. The nurse will carry out an individual in-depth qualitative interview at patient's home. The nurse will also conduct a home environment assessment, as the home environment plays an important role in promoting or restricting performance of everyday tasks of people with disabling chronic diseases and their caregivers. The interviews will be conducted with the patients and the caregivers separately, so they can talk openly and confidentiality is guaranteed. Prior to commencement of the data collection, the nurse will provide an information sheet to solicit participants' understanding about the nature of the study, their rights and confidentiality issues. After obtaining the written consent, an interview guide with a list of open-ended questions will be used to elicit the illness experience and self-care needs of the pneumoconiosis patients and the caregiving experience of their family caregivers. All the interviews will be audio-taped after obtaining the permission from the participants.

This study aims to explore the illness experience and needs of patients with pneumoconiosis and the care-giving experience of their caregivers. Specifically, the objectives of this study are as follow:

• To understand the self-care behaviors and illness experience of patients with pneumoconiosis
• To explore the needs of patients with pneumoconiosis when managing the disease at home and in the community
• To understand the caregiving experience of the family caregivers of patients with pneumoconiosis
• To explore the caregivers' needs when taking care of patients with pneumoconiosis
• To explore how disease management and caregiving take place in patients' home environment and to identify the environment-related facilitators and barriers for managing pneumoconiosis.

After the interview, the nurse will also conduct a home environment assessment with a standard environmental checklist to evaluate the home for safety, modification needs and ease of mobility. Such assessment would provide valuable information to inform the needs of pneumoconiosis patients and their caregivers when they participate community-based and home-based rehabilitative activities. The assessment includes the environment outside and within patients' home environment, such as any difficulties in accessing the entrance of the building (e.g. barrier-free entryway, no elevator for one or more floor), the use of equipment or adaptations in the home to aid in daily activities, such as rails and commodes. The commonly seen home environmental hazards will also be assessed, such as the exposure to second-hand smoking, the use of nonskid mats in bathroom, grab bars in the shower or tub, spacing and entryway in the bathroom and bedroom. Each of the item will be assessed to solicit a 'no problem observed' or 'problem observed'.

The audio-taped qualitative data will be transcribed verbatim by the research nurse. Content analysis will be adopted for the data analysis. In particular, the qualitative data will be analyzed to seek a better understanding of what and how the patients and the caregivers can be supported in their disease self-care and caregiving trajectory. The emerged themes from the qualitative data will be used to optimize the patient support program in the subsequent quantitative phase of the study. The home environment assessment data will be summarized by appropriate numbers and percentages.

• Study Type: Observational
• Enrollment (Actual): 83

Contacts and Locations

Study Locations

• Hong Kong
  • Hong Kong, Hong Kong
    • Pneumoconiosis Compensation Fund Board

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 21 years and older (Adult, Older Adult)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

• Sampling Method: Non-Probability Sample

Study Population

Pneumoconiosis patient who have registered with the Pneumoconiosis Compensation Fund Board. Their primary caregivers will be invited to join as well.

Description

Inclusion Criteria:

For Patients:

• a confirmed diagnosis of pneumoconiosis for at least 1 year
• had registered with the Pneumoconiosis Compensation Fund Board in Hong Kong to receive compensation

For the respective family caregivers:

• 21 years of age or older
• assuming the role as the primary caregivers of a pneumoconiosis patient who have registered with the Pneumoconiosis Compensation Fund Board

Exclusion Criteria:

• Those patients or family caregivers with impaired communication ability or impaired cognitive function [as indicated by the Abbreviated Mental Test (AMT) score ≤ 6/10] in preventing them to participate in the research activities will be excluded.

Study Plan

How is the study designed?

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Experience of self-management of pneumoconiosis	Evaluation from the patients' point of view on how they self-manage pneumoconiosis in the community and what are their unmet needs, semi-structured qualitative interviews with pneumoconiosis patients will be conducted.	60 minutes
Care-giving experience of family caregivers of pneumoconiosis	Evaluation from the family caregivers' point of view on their care-giving experience of patients with pneumoconiosis and their needs when taking care of their care recipients. semi-structured qualitative interviews with the family caregivers of pneumoconiosis patients will be conducted.	60 minutes

Collaborators and Investigators

• Sponsor: Chinese University of Hong Kong
• Investigators: Principal Investigator: Polly Li, Prof, The Nethersole School of Nursing

Publications and helpful links

General Publications

• Li PWC, Yu DSF, Tam SYS. The experience of patients and family caregivers in managing pneumoconiosis in the family context: A study protocol. J Adv Nurs. 2019 Dec;75(12):3805-3811. doi: 10.1111/jan.14203. Epub 2019 Oct 2.

Study record dates

Study Major Dates

• Study Start (Actual): October 5, 2018
• Primary Completion (Actual): September 30, 2019
• Study Completion (Actual): September 30, 2019

Study Registration Dates

• First Submitted: July 12, 2019
• First Submitted That Met QC Criteria: July 15, 2019
• First Posted (Actual): July 17, 2019

Study Record Updates

• Last Update Posted (Actual): January 29, 2021
• Last Update Submitted That Met QC Criteria: January 27, 2021
• Last Verified: January 1, 2021

More Information

Terms related to this study

• Keywords: Self-care; Pneumoconiosis; Care-giving
• Additional Relevant MeSH Terms: Respiratory Tract Diseases; Lung Diseases; Occupational Diseases; Lung Diseases, Interstitial; Lung Injury; Pneumoconiosis
• Other Study ID Numbers: PCFB2018

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No