INTRODUCTION
According to the World Health Organization, to enhance the process of healthy aging, it is necessary to increase the focus on promoting quality in the additional years of life by maintaining mental and physical activity [1]. Physical activity (PA) has well-established benefits for physical and psychological well-being, including improving cognitive function, reducing the risk of chronic diseases, overall well-being, and social interaction [2,3].
Despite the potential benefits and practicality of PA, many older adults spend a significant amount of time engaging in sedentary behaviors. These low levels of PA occur because of psychological (e.g., fear of falling), physical (e.g., chronic health conditions), and environmental factors (e.g., lack of social support) [4]. Among the environmental factors, family caregivers play a crucial role in supporting older adults’ PA. Their responsibilities included motivating and encouraging older adults to be active, planning and organizing their daily schedules, providing assistance and supervision, monitoring their progress and outcomes, and creating a supportive environment [5].
While the primary goal of family caregivers in assisting the mobility of older adults should be to help them maintain independence, perform activities of daily living (ADLs) and instrumental activities of daily living (IADLs), as well as preserve their self-esteem, it can have a counterproductive effect such as limiting the PA, which is referred to as “Informal Caregiver-induced Forced Immobility (ICFI) [5,6]. ICFI is defined as the intentional or unintentional provision of little or no assistance to older adults who require help with mobility or who disrupt the PA of older adults under their care [6]. It can also refer to parenting or overprotective behavior patterns from informal caregivers towards older adults for various reasons, such as caregivers’ fear of falling [7]. In some cultures, respect refers to compelling someone to sit and watch when they are able and willing to perform. Over respecting older adults and taking on their responsibilities by informal caregivers may result in neglecting certain tasks, such as ADL, which may consequently lead to a loss of independence and autonomy in older adults [8]. This can lead to physical and mental health consequences, such as a decrease in overall well-being and quality of life [6].
To comprehend ICFI as a multifaceted human behavior that can dramatically affect the mobility of older adults [5], qualitative research helps explore people’s inner experiences of the phenomena. Several qualitative studies have been conducted to explore barriers to PA in older adults [9-12]. However, none of these studies have specifically investigated the role of ICFI in older people’s immobility, especially in frail older adults who use mobility aids. Additionally, to design effective intervention strategies and policies for providing appropriate care for older adults, it is essential to understand the perceptions and experiences of both older adults and informal caregivers regarding ICFI. Therefore, the following questions guided our study: What are the perceptions of frail older adults and their informal caregivers regarding ICFI? What were their experiences of this phenomenon?
METHODS
1. Study Design
This qualitative study used a conventional content analysis approach to explore the perceptions and understanding of frail older adults and informal caregivers regarding ICFI. The study was conducted between January and September 2023 in Tabriz, Iran.
2. Participants and Sampling
Participants were older adults (n=20) aged 60 years and above who had used a mobility aid, such as a cane or walker, at least during the last three months, along with informal family caregivers (n=14) (persons who dedicated the most time to providing care). Older adults who scored less than six on the Abbreviated Mental Test, were hospitalized, resided in a nursing home, or expressed a fear of falling were excluded from the study. The health profiles and contact information of all older adults and their families were registered in the health centers of Tabriz City. Participants were selected using purposive sampling with maximum variation in terms of age, sex, marital status, income status, living arrangements, history of falls, type of mobility aid, duration of use, and reason for using mobility aid. During the phone call, the purpose of the interview was explained to older adults and informal caregivers. Those who met the inclusion criteria were invited to participate in interviews. The demographic characteristics of the participants are shown in Table 1.
3. Data Collection
Data were collected through semi-structured interviews. To guide the interviews, the questions were asked face-to-face based on the “interview guide” that was designed in advance by the research team (Table 2). The first interview question was, “What is your (the caregiver’s) opinion on the use of mobility aids?” Open-ended questions, such as “Could you please explain the role of caregivers in assisting the older adult with mobility?” were used. Further deepening and probing questions such as “Please explain more about this,” “Why,” and “How” were asked to uncover the depth of the participant’s experiences and feelings. The time and location of the interview sessions were arranged according to each participant’s convenience. Interviews with older adults and caregivers lasted between 30 and 45 minutes and 40 and 60 minutes, respectively. Additionally, the interviews were audio recorded. The interviews were conducted until data saturation was reached [13]. Data saturation for older adults was reached after the 14th sample, and data collection continued until the 20th sample. In the case of informal caregivers, data saturation was reached after the 11th sample, and the study was extended until the 14th sample. The interviewer presented herself as neutral and avoided implying the correct answer. She phrased the questions in a way that allowed the participants to feel accepted, regardless of their answers. She asked indirect and open-ended questions, starting with general questions before moving on to specific and sensitive topics. The interview time was carefully chosen to ensure that older adults and informal caregivers did not feel rushed when answering questions and had sufficient time to provide detailed explanations. If the participants were tired, they were given the opportunity to rest, and the interview continued.
4. Data Analysis
Conventional content analysis was performed using the Graneheim-Lundman method [14]. Interview audiotapes were transcribed verbatim as soon as possible. The written content was thoroughly verified for accuracy and carefully read and re-read. Inductive coding is also used. When a new concept was discovered in the text, conceptual names or codes were assigned. All the initial codes related to the ICFI were derived from the data obtained during this process. Following the open coding process, the codes were examined for similarities and differences and subsequently organized into categories. Finally, relevant categories were consolidated to form cohesive themes.
To confirm this, we revised the coding process several times. The first researcher (P.G.) conducted and analyzed all interviews and extracted themes based on her preconceptions while considering the research question. The research team also engaged in close discussions and compiled the codes into themes, resulting in the development of the final categories and themes. MAXQDA software ver. 20.0 (VERBI Software, Berlin, Germany) was used to manage and analyze the data.
5. Trustworthiness
The criteria by Guba and Lincoln [15] were used to verify the trustworthiness of the data to ensure credibility, transferability, dependability, and conformability. To ensure interrater reliability, a second researcher randomly selected and coded one-fifth of the transcripts. Colleagues familiar with the qualitative approach, gerontologists, and the research teams reviewed the analytical process and confirmed that both researchers arrived at similar themes in the texts. The analytical code was re-checked to increase reliability and stability. The terminology underwent minor changes; however, the emerging themes remained consistent.
To verify the initial findings, the researchers conducted member checks during meetings with the participants. To ensure transferability, participants were selected with maximum variation in their characteristics, including age, sex, marital status, income status, and living arrangements. To ensure a comprehensive report of our research, we used the Standards for Reporting Qualitative Research Checklist [16].
6. Ethical Considerations
This study was approved by the Research Ethics Committee of the Tabriz University of Medical Sciences (code: IR.TBZMED.REC.1401.878). Written informed consent was obtained from all the participants. This was explained to participants who were illiterate or had low literacy skills, and they were then asked to explain their understanding while one of their literate companions reviewed it. Participants were assured of data confidentiality and voluntary participation in the study.
RESULTS
The mean ages of older adults and informal caregivers were 74.9 and 48.2 years, respectively. Fifty percent of older adults and over 50% of caregivers were female. The level of education for 30% of the older adults was primary school. Approximately 55% were married, 50% lived with their spouse, and 50% were retired. The level of education for 28% of the caregivers was primary school, and 28% had a bachelor’s degree. Approximately 35% were daughters of older adults or housewives (Tables 1, 3).
In total, 93 codes were extracted from older adults, and 140 codes were extracted from caregivers. The data revealed eight categories and three main themes (Table 4). The definitions and explanations of the ICFI among frail older adults and informal caregivers were as follows: preventing older adults’ social interaction/social participation, not allowing older adults to perform ADLs, and preventing older adults from engaging in physical activities and exercising.
1. Preventing Older Adult’s Social Interaction/Social Participation
According to older adults’ and caregivers’ expressions, one of the main themes explaining the ICFI was that informal caregivers hindered the social interaction and participation of older adults. Subthemes included “preventing older adults from going outside,” “preventing them from going outside alone,” “not allowing older adults to attend parties or invite guests,” and “preventing older adults from traveling.”
1) Preventing older adults from going outside
Older individuals disclosed that their informal caregivers limited their freedom to leave the house despite their strong desire. An 85-year-old woman said:
“While I intended to visit my daughter today, I changed my mind. I wanted to go, even though my family wouldn’t allow me, so I didn’t go” (older adult [O.] 5).
Informal caregivers confirmed these statements by expressing their fears and concerns about the health of their older family members and the challenges of taking them out.
“My mother rarely goes out. We are afraid that something might happen, such as a car hitting her. If she wants to cross a street with a walker, it could take a long time because the cars might not wait for her to pass. This is why we do not let her go out on her own” (IC.3).
2) Preventing older adults from going outside alone
Older adults stated that informal caregivers did not allow them to go out alone, including to the park, visit the doctor, go to places with stairs, or go outside during snowy weather. If a caregiver was not available, the elderly person had no choice but to stay at home and avoid going outside.
“My wife neither agrees to go out alone nor do my sons let me. I am forced to do so. My sons say wherever you go, do not go out or go to the park alone” (O.2).
Informal caregivers confirmed these comments by mentioning that they did not allow older adults to go out alone, justifying this behavior:
“I do not let her go by herself, except when she goes to the mosque. I accompany her to most places so that she is not alone, and I do not have to worry about her” (IC.13).
3) Not allowing older adults to attend parties
This subtheme implied the behaviors of informal caregivers that hindered the social participation of older adults. When older adults need to attend a party, caregivers would suggest alternatives, such as attending the party themselves instead of letting them go. One older participant stated:
“My children do not take me anywhere. When I visited my relatives, they felt embarrassed. What can I do? They go themselves and leave me alone at home” (O.16).
Informal caregivers also mentioned that they discourage older adults from inviting guests into their homes:
“I prohibit my mother from inviting guests, such as bringing my grandmother to our house. There was someone else who could take care of her, so there was no need to bring anyone to our house” (IC.4).
4) Preventing older adults from traveling
While older adults viewed traveling to stay active, socialize, and explore new places, informal caregivers stated that they frequently impede older family members from traveling.
“I have forbidden her from going on any trips, including her desire to visit Mashhad with her sisters. I am concerned that she would face inconvenience and her sisters would not be able to assist her” (IC.13).
2. Not Allowing Older Adults to Perform Activities of Daily Living
Based on the experiences of both older individuals and their caregivers, this study revealed that informal caregivers could hinder ADL performance, resulting in ICFI among older adults. The subthemes observed within this theme include “not allowing older adults to perform household tasks” and “not allowing older adults to use the toilet and bathroom alone” by an informal caregiver.
1) Not allowing older adults to perform household tasks
This subtheme included the recommendations and actions proposed by informal caregivers that prevent older individuals from performing various household tasks, such as cleaning, vacuuming, doing laundry, and grocery shopping.
“My son and husband insist that I make a list of the items I need, assuring me that they will handle the purchase. They continually advise me not to go shopping because they fear I might fall or get lost” (O.20).
Informal caregivers showed protective behaviors by discouraging older adults from performing household tasks because of concerns about their older adults’ ability to do them.
“I prefer to do the sweeping myself and not let her do it. I also handle the laundry. I put it in the washing machine and hang it to dry. Sometimes she wants to wash a specific piece of clothing, but I do not allow her to do so” (IC.7).
2) Not allowing older adults to use the toilet and bathroom alone
In this subtheme, certain behaviors that impede older adults’ ability to use the bathroom and toilet independently arise despite their capability to do so. These behaviors reduce autonomy and create obstacles to independence, ultimately affecting the ability to bathe and use the toilet without assistance.
“Once before, I slipped in the bathroom and bumped my head on the floor. I had to call my daughter to help. During this time, my daughter insisted on accompanying me whenever I needed to use the bathroom.” (O.13).
An informal caregiver confirmed this issue and emphasized the importance of assisting and supervising older adults during bathroom use.
“My mother might fall, as she has slipped in the bathroom a couple of times. However, I still accompany her and carefully guide her to the toilet to prevent falls. There are times when she needs to crawl to reach the toilet, and I help her up afterward.” (IC.3)
3. Preventing Older Adults from Engaging in Physical Activities and Exercising
It is important to support and motivate informal caregivers to engage older adults in physical activities and maintain their interest in exercising. This theme focuses on the experiences of older adults and informal caregivers in managing informal care situations that may hinder senior mobility, ultimately resulting in unavoidable ICFI. In this theme, subthemes were observed, including “not allowing older adults to walk, climb stairs, and stand upright” and “taking away the tasks that older adults perform.”
1) Not allowing older adults to walk, climb stairs, or stand upright
One of the older participants stated the following:
“My wife advises me against excessive stair usage and urges me to only use them when necessary. She forbids me from going up and down stairs.” (O.13).
The informal caregivers also mentioned that they prevented their older adults from climbing stairs, walking, or standing up because of fear of potential consequences.
“Every time my mother goes up or down even a few stairs, it frightens me. She requests that I massage her knees, which can be bothersome, so I prevent her from climbing the stairs to avoid her annoyance.” (IC.1).
2) Taking away the tasks that older adults perform
Another explanation expressed from the perspective of both older adults and informal caregivers was relieving older adults of the tasks they usually perform. One participant explained the following:
“I am very detail-oriented and tidy. For example, when I was in the middle of doing the housework and cleaning the toilet, my son knocked on the door. He appeared upset and asked me to stop cleaning. He then took the cleaning supplies from me and cleaned it himself, saying, “You don’t have to do this.” (O.8).
To confirm this, an informal caregiver made the following statement and explained that it appeared unlikely for older individuals to work while using mobility aids.
“I don’t allow my mother to work. Doing housework with a walker? No way! Why should I let her be bothered? It’s difficult for her to sweep the house with a walker, and it would only annoy her if she tried.” (IC.6).
DISCUSSION
To our knowledge, this is the first qualitative study to explore the perceptions of frail older adults and their informal caregivers regarding ICFI. Our participants explained that the ICFI prevented older adults’ social interaction and social participation, did not allow them to perform ADLs, and prevented them from engaging in physical activities and exercising. Based on these findings, the concept of ICFI in Iranian families has been explained from various perspectives, leading to a clearer understanding of the concept. This immobility can create a vicious and continuous cycle within the home and among family members, dominating older adults’ social lives.
The ICFI can pose a threat to successful aging by limiting engagement in social, leisure, and physical activities. While the primary purpose of informal care is to assist older adults in maintaining their ability to perform ADLs and IADLs, many informal caregivers and older adults may not be aware of the ICFI or may perceive it as a natural and positive aspect of life. Thus, it is overlooked [17]. It is important to gain a comprehensive understanding of this concept and its various dimensions to assist health practitioners, gerontologists, and health policymakers in incorporating it into their intervention strategies for the care of older adults at home and in residential care settings.
Our data indicated that participants perceived ICFI as preventing social interaction and social participation among older adults. They believe that preventing older adults from going outside and preventing them from going outside alone could be ICFI. These findings were consistent with those reported by Kenkmann et al. [18] Their report indicated that caregivers might subject older adults to abuse through imprisonment and isolation. When older adults are isolated at home, they may not have many opportunities for PA, which can result in a sedentary lifestyle [19]. Social isolation and loneliness are risk factors for poor physical and mental health outcomes. Finally, these factors can create a harmful cycle that negatively affects the overall well-being of older adults [20]. Similarly, Anezaki et al. [21] conducted a cohort study in Japan that revealed that older adults who were prevented from going outside were more susceptible to falling than others. Therefore, it is crucial to preserve opportunities for older adults to live in their communities.
In the social participation of older adults, family approval and support play a crucial role. This finding was confirmed by a grounded theory study of social participation among Iranian community-dwelling older adults [22]. A 76-year-old woman expressed her frustration: “Sometimes, my children do not allow me to participate in our neighborhood events under various pretexts, such as the fear of me falling and getting injured, and this makes me really depressed.”
Our data also show that ICFI can occur when informal caregivers prevent older adults from traveling. A finding consistent with previous research suggests that recommendations from family members significantly influence older adults’ social participation, travel decisions, and leisure activities [23]. When making decisions about older adults’ travel, informal caregivers always prioritize the well-being and health of the elderly they care for. Families may choose to limit travel for older adults because of safety concerns such as physical limitations, cognitive impairment, or medical conditions [24].
Based on our data, ICFI is also explained as not allowing older adults to perform ADLs and preventing them from engaging in physical activities. Regarding evidence of the impact of families in preventing older adults from performing ADLs and other activities, it can be argued that older adults who live alone are more likely to have greater opportunities to engage in household chores than those who live with their families [21]. In a study conducted by Grossman and Stewart [25], a qualitative analysis revealed that older adults held a pessimistic view towards leading sedentary lives. This notion was exemplified by a 78-year-old male participant who explicitly stated, “nothing is worse than spending the entire day sitting at home’.” A significant majority of participants emphasized receiving encouragement from family and friends. One study indicated that it is crucial to emphasize the importance of participating in low-intensity activities such as shopping to promote and sustain PA among older adults [26].
Older adults in different countries are viewed from a cultural perspective that affects their ICFI. In Western cultures, there has been a traditional orientation towards youth, leading to these societies being labeled as ageist, undervaluing older adults. In contrast to Westerners, Easterners place a higher emphasis on obedience and respect towards their older adults. This cultural value is shaped by filial piety, which instills a positive outlook on aging and emphasizes the importance of respecting and caring for older generations [8]. Over-respecting and taking on caregiving duties can lead to the neglect of important tasks such as ADL, ultimately resulting in a decline in independence and autonomy for older adults. In some cultures, respect is misunderstood as requiring individuals to sit back and watch, even if they are perfectly capable and willing to participate [27]. However, disrespecting older adults can have negative consequences, such as overlooking their mobility challenges, neglecting their need for PA, and ultimately engaging in abusive and discriminatory actions [28].
In a qualitative study focusing on the meaning of mobility for residents and staff in long-term care facilities, all participants expressed the belief that being allowed to move around and participate in activities profoundly influenced their overall well-being [29,30]. They felt that the confinement in their rooms prevented their freedom. Caregivers’ forced immobility was perceived negatively, resulting in a decrease in freedom and independence. Without the freedom to move around in their surroundings, the residents felt like prisoners. Previous studies have shown that older adults who receive high levels of support or protection and/or feel under pressure from loved ones to perform physical activities are less likely to maintain physical mobility [31].
Our data also revealed that informal caregivers expressed concerns about possible injuries, falls, and loss when older adults went out alone. It is crucial to address the root causes of falls, prevent them, and assess after falling, rather than restrict mobility, which can lead to deconditioning and reduced functioning. Informal caregivers need to be educated about fall prevention strategies. These strategies include fall-related education; conducting environmental assessments for home modifications; implementing interventions to improve the strength, balance, and endurance of older adults; and stopping or adjusting medications that increase the risk of falls. Additionally, optimizing vision and hearing, controlling dizziness, and treating osteoporosis are important measures to prevent fractures. To prevent older adults from losing when they go out alone, relevant contributions in the field of tracking technologies such as location-based services, mobile devices, and global positioning systems can be useful [32].
1. Clinical Implications and Suggestions for Future Studies
This study contributes valuable insights into the field of gerontology and caregiving by elucidating the complex dynamics of the ICFI and its impact on the mobility and well-being of older adults. The perceptions of older adults and caregivers regarding the ICFI should be considered when designing intervention strategies for the care of older adults in home and residential care settings by health practitioners, gerontologists, and health policymakers. Further research is warranted to explore the effectiveness of interventions aimed at addressing ICFI and promoting healthy aging in older adults. This study will help develop targeted interventions and policies to effectively support older adults and their caregivers. Researchers should consider our results when developing relevant indicators and instruments for measuring ICFI.
We reviewed the WHO guidelines for caring for mobility problems in older individuals and found that all of them overlooked ICFI [33]. These guidelines were revised to include the role of informal caregivers in the PA of older adults. Furthermore, qualitative studies on forced immobility in hospitals and long-term care facilities are required. Healthcare professionals in these settings are responsible for assessing and managing immobility in older adults. This may involve implementing strategies such as regular repositioning, physical therapy exercises, and assistive devices. Understanding the experiences of older adults and formal caregivers can help to inform better practices and policies to promote patient autonomy and well-being.
2. Limitations
The findings of this qualitative study are specific to the Tabriz culture and other cities in Iran. Iranian culture places a strong emphasis on family values and respect for older adults, which has led to a tradition of caregiving for older parents. It is seen as the responsibility of the younger generations to care for their older adults to repay the love and support provided to them when they are younger. This reflects a sense of duty and obligation that is deeply ingrained in Iranian society. Additionally, older adults and informal caregivers may overemphasize positive behaviors or overlook negative or undesirable behaviors. To minimize this bias, we preferred an experienced interviewer who conducted the interviews in a nonjudgmental manner and ensured confidentiality. To minimize researcher influence, two researchers independently read and coded the transcripts. The research team reviewed the analytical process and confirmed that both researchers identified similar themes in the texts. Although selection bias seems inevitable in qualitative research, the findings may be biased towards individuals who are more inclined to participate and may not accurately represent the perspectives of older adults and caregivers who did not participate in the study. We included participants with a range of age, gender, marital status, income status, living arrangements, history of falls, type of mobility aid, duration of use, and reasons for using mobility aids.
3. Conclusions
As older adults and informal caregivers reported, ICFI means that for older adults “social interaction/social participation is limited,” “performing ADLs is disallowed,” and “engaging in physical activities and exercising is prohibited.” Based on these findings, the concept of ICFI in Iranian families of older adults has been explained from various perspectives, leading to a clearer understanding of this concept. This can create a vicious and continuous cycle within the home and among family members, dominating older adults’ social lives.
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