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
Protocol serial number 9463
Sponsor St George's University of London (UK)
Funder Macmillan Cancer Support
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

St George's University of London
Division of Mental Health
Cranmer Terrace
London
SW17 0RE
United Kingdom

ituffrey@sgul.ac.uk

Study information

Primary study designInterventional
Study designMulti-Centre Non-randomised Interventional Process of Care
Secondary study designNon randomised controlled trial
Study type Participant information sheet
Scientific title
Study objectives1. 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) studiedAll cancers
Intervention1. 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 didn’t 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 typeOther
Primary outcome measure(s)

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)

Key secondary outcome measure(s)

Not provided at time of registration

Completion date02/02/2011

Eligibility

Participant type(s)Patient
Age groupAdult
Lower age limit18 Years
SexAll
Target sample size at registration24
Key inclusion criteria1. 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 criteriaRecent bereavement (less than 6 months)
Date of first enrolment01/02/2010
Date of final enrolment02/02/2011

Locations

Countries of recruitment

  • United Kingdom
  • England

Study participating centre

St George's University of London
London
SW17 0RE
United Kingdom

Results and Publications

Individual participant data (IPD) Intention to shareNo
IPD sharing plan summaryNot 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
Participant information sheet Participant information sheet 11/11/2025 11/11/2025 No Yes
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