The effectiveness of a nurse-led education programme for caregivers of patients with lung disease due to inhalation of dust (pneumoconiosis)
| ISRCTN | ISRCTN13643232 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN13643232 |
- Submission date
- 24/05/2020
- Registration date
- 05/06/2020
- Last edited
- 04/03/2022
- Recruitment status
- No longer recruiting
- Overall study status
- Completed
- Condition category
- Mental and Behavioural Disorders
Plain English summary of protocol
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
Contact information
Scientific
School of Nursing
The Hong Kong Polytechnic University
Kowloon
-
Hong Kong
 ORCID ID |
0000-0002-8419-4847 |
|---|---|
| Phone | +852-2766-6773 |
| kin.cheung@polyu.edu.hk |
Study information
| Study design | Single-group interventional non-randomised repeated-measures study |
|---|---|
| Primary study design | Interventional |
| Secondary study design | Non randomised study |
| Study setting(s) | Community |
| Study type | Quality of life |
| Participant information sheet | Not available in web format, please use contact details to request a participant information sheet |
| Scientific title | The effectiveness of a nurse-led education programme for pneumoconiosis caregivers: a quasi-experimental study |
| Study objectives | 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(s) | 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 |
| Health condition(s) or problem(s) studied | 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 |
| 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 study start date | 12/09/2018 |
| Completion date | 31/12/2019 |
Eligibility
| Participant type(s) | Carer |
|---|---|
| Age group | Adult |
| Lower age limit | 18 Years |
| Sex | Both |
| Target number of participants | 50 |
| Total final enrolment | 49 |
| Key inclusion criteria | 1. Aged ≥18 years 2. Taking care of family members with pneumoconiosis at home |
| Key exclusion criteria | Non-Chinese speaking caregivers |
| Date of first enrolment | 01/08/2018 |
| Date of final enrolment | 01/09/2019 |
Locations
Countries of recruitment
- Hong Kong
Study participating centre
Chang On Building
Nanchang Village
Sham Shui Po
Kowloon
-
Hong Kong
Sponsor information
Other
Unit 1-4 G/F.
Cheong On House
Nam Cheong Estate
Sham Shui Po
Kowloon
-
Hong Kong
| Phone | +852-238161666 |
|---|---|
| Pmaahk@gmail.com |
Funders
Funder type
Charity
No information available
Results and Publications
| Intention to publish date | 31/07/2020 |
|---|---|
| Individual participant data (IPD) Intention to share | No |
| IPD sharing plan summary | Not expected to be made available |
| Publication and dissemination plan | The results of the study will be disseminated through journal papers, conference, and sharing sessions. |
| IPD sharing plan | Ethical approval does not permit data sharing. Participants did not consent to data sharing. |
Study outputs
| Output type | Details | Date created | Date added | Peer reviewed? | Patient-facing? |
|---|---|---|---|---|---|
| Results article | 26/01/2021 | 04/03/2022 | Yes | No |
Editorial Notes
04/03/2022: Publication reference added.
05/05/2020: Trial's existence confirmed by the Hong Kong Polytechnic University.
