Table 5 Challenges and recommendations for planning a study involving older people in long-term care facilities

Challenges faced during the survey process

Approach to overcome the challenges

The complex clinical and functional profiles of older adults often resulted in refusal, resistance, and low cooperation during data collection. Moreover, rapid functional decline further complicated the research process, resulting in the loss of participants.

The researchers aimed to conclude data collection in the first and only attempt to approach older people whenever possible. However, when it was not possible to engage with the older adults initially, additional attempts were made to secure their involvement, considering emotional and health-related fluctuations.

A high prevalence of cognitive impairment among participants was observed, with low levels of cooperation and behavioral issues such as depression and irritability.

Researchers demonstrated empathy, patience, and flexibility to adapt to each individual’s unique needs and limitations, particularly those with cognitive impairments.

Communication with some older adults was complicated by speech difficulties, lack of interest, and sensory impairments such as hearing and vision loss.

Researchers sought to communicate directly and clearly with older adults by speaking louder and more slowly, using appropriate language, establishing non-verbal communication, and using gestures and facial expressions. Whenever possible, caregivers supported communication in more complex cases.

The listing of older adults in some LTCFs was outdated, containing individuals who have already passed away.

There was a need to continuously update the records of older adults within LTCFs before the sample selection.

Some LTCF coordinators have shown significant resistance and skepticism towards the research.

Flexibility was needed to justify the study’s importance and demonstrate potential benefits, such as enhanced resident care and scientific evidence generation.

Obtaining informed consent from LTCF coordinators and older residents, especially those with severe cognitive impairment, was a challenge.

Collaborative relationships with LTCFs were crucial for addressing concerns. We also implemented flexible recruitment strategies, such as repeated telephone calls, personal visits, and tailored explanations of the study’s importance. Careful consideration of consent by proxy and respecting the autonomy of individuals with cognitive impairment was necessary.

Institutional routines affected the execution of the study.

There was a need for adjustments in data collection timeframes to accommodate residents’ schedules and activities. Coordination with LTCF staff to find suitable interview times while minimizing routine disruption was essential.

Logistics related to data collection, such as mobility issues among residents, finding suitable and private examination locations, and addressing biosafety concerns during the COVID-19 pandemic, particularly challenged the oral examination process.

The oral examinations were performed in available spaces, such as TV armchairs or beds, ensuring participant comfort and privacy. Adaptation and adherence to strict protocols were necessary to ensure successful data collection while safeguarding the health of residents and researchers. Standardized procedures for data collection were established, with protocols for each stage of the research process, and researchers received training.

Variables associated with subjective aspects posed challenges in assessing older adults with cognitive impairment. Traditional instruments often failed to capture their experiences accurately, raising concerns about the reliability of data collected from individuals with dementia.

We could not collect subjective variables from all older adults, only among those without cognitive impairment. However, we acknowledged the necessity for more context-specific tools tailored to individuals with dementia. These tools should address their unique communication challenges and cognitive abilities, enabling more accurate subjective assessment. Adopting a mixed-methods approach that combines qualitative and quantitative methods can offer a more comprehensive understanding of older adults’ subjective experiences, including those with dementia.

Recommendations for future studies

Align Expectations: Ensure clear communication and mutual understanding between the researcher and the LTCF, outlining the indirect benefits of the study to engage the institutional community effectively.

Establish Trustful Communication: To build a trustworthy relationship, foster open and constant dialog with the LTCF coordinators, caregivers, nursing staff, and, most importantly, the residents.

Flexibility and Patience: Be adaptable, patient, and creative in establishing satisfactory communication with participants, considering the diversity of institutional contexts.

Tailored Research Methods: Employ combined research methods and techniques tailored to the clinical-functional profile of the residents. Utilize multiple sources or methods to assess the same variables, such as consulting records, conducting interviews with residents, or using a proxy informant.

Inclusion of Cognitive Impaired Individuals: Do not exclude individuals with cognitive deficits; their inclusion is crucial for delineating the complete profile of the population.

Time Planning: Plan the research timeframe thoughtfully, considering the time required for LTCF recruitment and respecting the institutional routines.

Optimizing Data Collection: Optimize data collection time with residents to avoid fatigue and discomfort, ensuring a positive experience for participants.

Privacy Considerations: Choose suitable locations within the LTCF where residents feel at ease during examinations, ensuring privacy and comfort.

Respect Autonomy: Respect the autonomy of residents who may choose not to participate at a given time; be open to their willingness to participate on another occasion.