Plain English Summary
Background and study aims
The term 'pneumoconiosis' refers to a group of lung diseases caused by the inhalation - and retention in the lungs - of dusts. The most commonly occurring types of pneumoconiosis (apart from asbestos-related disease) are coal worker’s pneumoconiosis, arising from the inhalation of coal dust, and silicosis, arising from the inhalation of respirable crystalline silica (RCS) from dust from building materials based on rock, sand or clay. There is a long delay - up to 10 years or more - between exposure and onset of disease, so most new cases or deaths from pneumoconiosis reflect the working conditions of the past and occur in individuals who have retired.
Pneumoconiosis is a long-lasting lung disease that cannot be cured. Pneumoconiosis patients require their family members to take care of them as the disease progresses. The needs of pneumoconiosis caregivers have been neglected even though their mental wellbeing has been found to be negatively affected. However, there has been little research on how best to support the needs of pneumoconiosis caregivers. To fill this research gap, the aim of this study was to evaluate the effectiveness of a nurse-led education programme on caregivers’ mental health, caregiving burdens, unmet direct support and enabling needs. Caregivers were recruited from the community in Hong Kong. They participated in four nurse-led weekly 90-minute workshops.
Who can participate?
Adults aged 18 years or above who are taking care of family members with pneumoconiosis at home
What does the study involve?
The participants attended four weekly 90-minute workshops led by an experienced nurse in a community center. They filled in a questionnaire and had their body mass index (BMI) calculated from their weight and height and blood pressure measured before the first workshop, after the fourth workshop and 1 month after the fourth workshop.
What are the possible benefits and risks of participating?
The possible benefits are that the programme might improve caregivers’ mental health, reduce their caregiving burden and address their unmet direct support enabling needs.
The possible risks are that the participants might find the workshop brings up upsetting or overwhelming feelings. The project team monitored the participants' physical and psychological health during the workshops and data collection. A registered nurse, project assistant or social worker was present during the data collection and workshops. Onsite physical or psychological support was provided promptly and further referral to healthcare services was also provided if needed.
Where is the study run from?
Pneumoconiosis Mutual Aid Association (Hong Kong)
When is the study starting and how long is it expected to run for?
September 2018 to December 2019
Who is funding the study?
Pneumoconiosis Mutual Aid Association (Hong Kong)
Who is the main contact?
Dr Kin Cheung, kin.cheung@polyu.edu.hk
Trial website
Contact information
Type
Scientific
Primary contact
Dr Kin Cheung
ORCID ID
http://orcid.org/0000-0002-8419-4847
Contact details
School of Nursing
The Hong Kong Polytechnic University
Kowloon
-
Hong Kong
+852-2766-6773
kin.cheung@polyu.edu.hk
Additional identifiers
EudraCT number
Nil known
ClinicalTrials.gov number
Nil known
Protocol/serial number
Nil known
Study information
Scientific title
The effectiveness of a nurse-led education programme for pneumoconiosis caregivers: a quasi-experimental study
Acronym
Study hypothesis
After attending the nurse-led education programme, pneumoconiosis caregivers will improve their mental wellbeing, reduce caregiving burdens, and unmet needs fro direct support and enabling, as compared to that before attending the programme.
Ethics approval
Aprroved 11/9/2018, Hong Kong Polytechnic University School of Nursing Departmental Research Committee (Hung Hom, Kowloon, Hong Kong; +852 27666378; cherrie.mok@polyu.edu.hk), ref: HSEARS20180902002
Study design
Single-group interventional non-randomised repeated-measures study
Primary study design
Interventional
Secondary study design
Non randomised study
Trial setting
Community
Trial type
Quality of life
Patient information sheet
Not available in web format, please use contact details to request a participant information sheet
Condition
Pneumoconiosis caregivers' mental wellbeing
Intervention
After enrolment, participants were informed about the venue of the workshops. They were informed that they would attend four weekly 90-min workshops led by an experienced nurse. They were also required to fill in a questionnaire and undergo measurement of their BMI and blood pressure before the first workshop, after the fourth workshop and 1 month after the fourth workshop. The questionnaire and measurement took about 15 min.
The four educational workshops were on the following topics:
1. Knowing pneumoconiosis and chest percussion
2. Aging process and lifting and transfer techniques
3. Home safety and medication, and assisted feeding techniques
4. Infection prevention and caring for caregivers
Each workshop involved 40 min of teaching of the knowledge and skills demonstration and then 30 min of hands-on practice and return demonstration. The participants could use the rest of the time for questions, if any.
Intervention type
Behavioural
Phase
Drug names
Primary outcome measure
Psychological distress measured by the Hospital Anxiety and Depression Scale (HADS) at baseline, after the fourth workshop, and 1 month after the fourth workshop
Secondary outcome measures
1. Caregiver burden measured by the Caregiver Burden Inventory
2. Caregiving burden measured by the Caregiving Burden Scale
3. Unmet needs of caregivers measured by Carer Support Needs Assessment Tool
4. BMI calculated from the participant's weight and height measured using a scale
5. Blood pressure measured using a portable blood pressure monitor
All secondary outcome measures were assessed at baseline, after the fourth workshop, and 1 month after the fourth workshop.
Overall trial start date
12/09/2018
Overall trial end date
31/12/2019
Reason abandoned (if study stopped)
Eligibility
Participant inclusion criteria
1. Aged ≥18 years
2. Taking care of family members with pneumoconiosis at home
Participant type
Carer
Age group
Adult
Gender
Both
Target number of participants
50
Total final enrolment
49
Participant exclusion criteria
Non-Chinese speaking caregivers
Recruitment start date
01/08/2018
Recruitment end date
01/09/2019
Locations
Countries of recruitment
Hong Kong
Trial participating centre
Pneumoconiosis Mutual Aid Association
1 to 4, G / F
Chang On Building
Nanchang Village
Sham Shui Po
Kowloon
-
Hong Kong
Sponsor information
Organisation
Pneumoconiosis Mutual Aid Association
Sponsor details
Unit 1-4 G/F.
Cheong On House
Nam Cheong Estate
Sham Shui Po
Kowloon
-
Hong Kong
+852-238161666
Pmaahk@gmail.com
Sponsor type
Other
Website
Funders
Funder type
Charity
Funder name
Pneumoconiosis Mutual Aid Association
Alternative name(s)
Funding Body Type
Funding Body Subtype
Location
Results and Publications
Publication and dissemination plan
The results of the study will be disseminated through journal papers, conference, and sharing sessions.
IPD sharing statement:
Ethical approval does not permit data sharing. Participants did not consent to data sharing.
Intention to publish date
31/07/2020
Participant level data
Not expected to be available
Basic results (scientific)
Publication list