Mahdi Shafiee Sabet, Fatemeh Bahramnezhad, Nahid Dehghan Nayeri,
Volume 29, Issue 4 (1-2024)
Abstract
According to a global report, 47 million people are currently living with dementia, and due to the aging population, its prevalence is expected to triple by 2050. In the future, Iran is expected to experience a significant increase in the elderly population. Currently, in Iran, the prevalence of dementia among individuals over 60 years old is 7.9%. Therefore, this group represents a significant population that warrants further research (1).
The best understanding and explanation of human experiences come from first-hand sources, specifically from people who have experienced those phenomena. Therefore, reliable research sources place great emphasis on including the voices of these individuals (2). Qualitative research out for its collaborative, inclusive, and flexible structure, enabling the exploration of complex issues, including mixed or ambiguous attitudes (2). It can reveal the profound experiences and core values of people with cognitive impairment that may not emerge in quantitative studies. Additionally, qualitative research excels in vividly portraying these experiences and values (3).
Throughout history, people with cognitive impairments have been marginalized from engagement in health and social research, resulting in their voices being inadequately represented in such studies. (2, 4). Instead, their perspectives have been channeled through their legal representatives or guardians, a practice that often entails constraints. These limitations include the inability to accurately predict the patient's decision-making process, the amount and manner of information provided, and the weight of decision-making responsibility placed on them (5).
Furthermore, excluding these individuals from the research process can dehumanize them and perpetuate negative stereotypes about people with cognitive disorders. This also contributes to power imbalances (2). Therefore, it is crucial to develop strategies that ensure the safe participation of these individuals in research endeavors. Through these efforts, we can improve our understanding of policy and measures aimed at promoting health and well-being (6).
Fatemeh Bahramnezhad, Mahdi Shafiee Sabet, Nahid Dehghan Nayeri,
Volume 30, Issue 3 (9-2024)
Abstract
As explained in the first part, the acquisition of firsthand experiences is an essential element of qualitative research for uncovering and enriching study findings. However, individuals with cognitive disorders are often excluded due to various challenges. In these cases, researchers may rely on caregivers or close associates to understand their feelings and views. This approach not only reduces these individuals to mere objects but also presents ethical dilemmas, thereby impacting the depth and richness of study findings (1). Given that the methods of data collection significantly impacts the results of studies (2), it is imperative for qualitative researchers to strive towards directly gathering information from the individuals themselves. Understanding the experiences of people with cognitive impairments is crucial for providing evidence-based services. However, these patients often encounter challenges such as speech difficulties (3), ‘pseudo-reminiscences’ (4-6), mood fluctuations and behavioral problems (7), and other issues. Therefore, researchers should take into consideration certain factors when conducting interviews with these individuals as in-depth interviews aim to gain a deeper understanding of participants' life experiences (8,9). These interviews require specialized skills across various stages, encompassing the development of interview guides, participant recruitment, obtaining consent, conducting effective interviews, data analysis and interpretation, and proficient communication and dissemination of research findings. This section delves into the key aspects of each of these phases. During interviews, it is important to prioritize the well-being of both the researcher and the participant while reflecting on and ensuring the depth and richness of the interview content (6).
