NCT04022902

Brief Summary

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.

Trial Health

87
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
83

participants targeted

Target at P50-P75 for all trials

Timeline
Completed

Started Oct 2018

Shorter than P25 for all trials

Geographic Reach
1 country

1 active site

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Start

First participant enrolled

October 5, 2018

Completed
9 months until next milestone

First Submitted

Initial submission to the registry

July 12, 2019

Completed
5 days until next milestone

First Posted

Study publicly available on registry

July 17, 2019

Completed
3 months until next milestone

Primary Completion

Last participant's last visit for primary outcome

September 30, 2019

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

September 30, 2019

Completed
Last Updated

January 29, 2021

Status Verified

January 1, 2021

Enrollment Period

12 months

First QC Date

July 12, 2019

Last Update Submit

January 27, 2021

Conditions

Pneumoconiosis

Keywords

PneumoconiosisSelf-careCare-giving

Outcome Measures

Primary Outcomes (2)

  • 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

Interventions

No interventionOTHER

This is an exploratory qualitative study to understand the needs of patients with pneumoconiosis, and the care-giving experience of their family caregivers.

Also known as: Qualitative study

Eligibility Criteria

Age21 Years+
Sexall
Healthy VolunteersNo
Age GroupsAdult (18-64), Older Adult (65+)
Sampling MethodNon-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.

You may qualify if:

  • 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:
  • 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

You may not qualify if:

  • 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.

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

Pneumoconiosis Compensation Fund Board

Hong Kong, Hong Kong

Location

Related Publications (1)

  • 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.

    PMID: 31576609DERIVED

MeSH Terms

Conditions

Pneumoconiosis

Condition Hierarchy (Ancestors)

Lung Diseases, InterstitialLung DiseasesRespiratory Tract DiseasesLung InjuryOccupational Diseases

Study Officials

  • Polly Li, Prof

    The Nethersole School of Nursing

    PRINCIPAL INVESTIGATOR

Study Design

Study Type
observational
Observational Model
OTHER
Time Perspective
OTHER
Sponsor Type
OTHER
Responsible Party
PRINCIPAL INVESTIGATOR
PI Title
Assistant Professor

Study Record Dates

First Submitted

July 12, 2019

First Posted

July 17, 2019

Study Start

October 5, 2018

Primary Completion

September 30, 2019

Study Completion

September 30, 2019

Last Updated

January 29, 2021

Record last verified: 2021-01

Data Sharing

IPD Sharing
Will not share

Locations

HK(1)