Supporting people with learning disabilities (LD) who are affected by a relative or friend with cancer
| ISRCTN | ISRCTN34385004 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN34385004 |
| Secondary identifying numbers | 9463 |
- Submission date
- 21/04/2011
- Registration date
- 21/04/2011
- Last edited
- 01/05/2012
- Recruitment status
- No longer recruiting
- Overall study status
- Completed
- Condition category
- Cancer
Prospectively registered
Protocol
Statistical analysis plan
Results
Individual participant data
Plain English summary of protocol
Not provided at time of registration
Contact information
Dr Irene Tuffrey-Wijne
Scientific
Scientific
St George's University of London
Division of Mental Health
Cranmer Terrace
London
SW17 0RE
United Kingdom
| ituffrey@sgul.ac.uk |
Study information
| Study design | Multi-Centre Non-randomised Interventional Process of Care |
|---|---|
| Primary study design | Interventional |
| Secondary study design | Non randomised controlled trial |
| Study setting(s) | Other |
| Study type | Quality of life |
| Participant information sheet | Not available in web format, please use the contact details below to request a patient information sheet |
| Scientific title | |
| Study objectives | 1. To explore the experiences of people with learning disabilities who have a relative or friend with cancer 2. To identify the cancer information and support needs of this group 3. To identify the barriers people with learning disabilities face to receiving adequate information and support when a relative or friend has cancer 4. To make recommendations for 4.1.Practice 4.2. The development of resources 4.3. Future research, to ensure that people with learning disabilities are adequately supported when a relative or friend has cancer |
| Ethics approval(s) | Medical Research Ethics Committee on 10/06/2009 Ref: 09/H0716/37 |
| Health condition(s) or problem(s) studied | All cancers |
| Intervention | 1. Four focus groups of 6 participants 2. Each focus group will meet 4 times: 2.1. Getting to know you: introducing the study, and beginning to tell your story 2.2. What was good/difficult about what other people did (or didnt do) to help you understand and manage? 2.3. What could have been done better? What are your recommendations? 2.4. Nominal Group Technique will be used to elicit the most important recommendation 3. The focus groups will be conducted by two researchers (one to moderate the discussion, and one to make notes) and two co-researchers with learning disabilities who will support the lead researcher 4. The data will be analysed using content analysis supported by Nvivo software. All three researchers (including the co-researcher with learning disabilities) will analyse the data |
| Intervention type | Other |
| Primary outcome measure | 1. Participants' views on supportive measures, obtainted through Nominal Group Technique at the session 4 of each focus group 2. Final qualitative analysis of participants' views on completion of final focus group (April/May 2011) |
| Secondary outcome measures | Not provided at time of registration |
| Overall study start date | 01/02/2010 |
| Completion date | 02/02/2011 |
Eligibility
| Participant type(s) | Patient |
|---|---|
| Age group | Adult |
| Lower age limit | 18 Years |
| Sex | Both |
| Target number of participants | Planned Sample Size: 24; UK Sample Size: 24 |
| Key inclusion criteria | 1. People with learning disabilities who have some verbal skills 2. Age 18 or over 3. Have lived with a relative/friend with cancer in the past 5 years 4. Target Gender: Male & Female 5. Lower Age Limit 18 years |
| Key exclusion criteria | Recent bereavement (less than 6 months) |
| Date of first enrolment | 01/02/2010 |
| Date of final enrolment | 02/02/2011 |
Locations
Countries of recruitment
- England
- United Kingdom
Study participating centre
St George's University of London
London
SW17 0RE
United Kingdom
SW17 0RE
United Kingdom
Sponsor information
St George's University of London (UK)
University/education
University/education
Division of Mental Health, Cranmer Terrace
London
SW17 0RE
England
United Kingdom
"ROR" |
https://ror.org/040f08y74 |
|---|
Funders
Funder type
Charity
Macmillan Cancer Support
No information available
Results and Publications
| Intention to publish date | |
|---|---|
| Individual participant data (IPD) Intention to share | No |
| IPD sharing plan summary | Not provided at time of registration |
| Publication and dissemination plan | Not provided at time of registration |
| IPD sharing plan |
Study outputs
| Output type | Details | Date created | Date added | Peer reviewed? | Patient-facing? |
|---|---|---|---|---|---|
| Results article | qualitative study results | 01/12/2012 | Yes | No |
