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. 2023 Dec 1;8(4):230–239. doi: 10.22540/JFSF-08-230

Table 1.

Why are older adults living with the complexity of MLTC, frailty with a recent deterioration in health under-served by research?

Frailty MLTC MLTC, Frailty and Recent Deterioration in Health
Personal reasons
• Lack of perceived benefit
• Distrust of research staff
• Lack of confidence to make a decision Health reasons
• Poor health and mobility problems
• Communication problems/cognitive impairment
• Disability
• Fatigue
Research procedures
• Difficult to understand and read the consent form/information leaflets
• Time consuming/demanding/intrusive
• Travel requirements
Other
• Stereotypical assumptions about ageing; viewed as vulnerable and difficult to locate
Personal reasons
• Routines (i.e., caring for grandchildren)
Health reasons
• Complex needs; physical, psychological and social performance
• Intrusive problems; pain, incontinence, falls, pressure ulcers and delirium
• Fatigue, shortness of breath, limited mobility and anxiety
• Medical reasons and health-related commitments (i.e., medical appointments)
Research procedures
• Travel and transport issues
• Research outcomes less predictable and increased risk of adverse events
• Time requirements
Paucity of research: one study conducted by Bone et al., successfully recruited 90 older adults with frailty and a recent deterioration in health
Strategies for increasing recruitment and retention of these under-served groups.
Recruitment Retention Other
• Take time to explain the research fully and use simple language, involve relatives and friends to help/support the older adult to make a decision
• Short consent form using large print
• Educational materials
• Gifts/financial compensation/reimbursement of costs incurred
• Establish a trustworthy relationship
• Use General Practitioners as a credible source
• Ensure communication aids are working
• Use suitable facilities
• Mitigate unique challenges before starting recruitment
• Avoid certain times of approaching participants
• Offer a flexible approach and adaptation to study procedures including home-based assessments
• Avoid the use of time-consuming questionnaires
• Divide tasks into smaller sections and allow for breaks
• Consider data collection and intervention delivered by telephone
• Maintain regular contact with participants
• Ensure research and clinical staff have excellent social skills
• Provide feedback on participants performance and share study results
• Consider outcome measures as physical, psychologically and socially acceptable
• Use patient and public involvement
• Include carers of participants and consider carer respite
• Consider tools and resources within the Innovations in Clinical Trial Design and Delivery for the Under-served framework and roadmap (INCLUDE)