Abstract
BACKGROUND:
With the ageing population in China and an increasing number of the elderly developing chronic illnesses, health services for the elderly have become a major concern. They have significant needs for health information (HI) such as online medical consultation, disease prevention, and medical insurance.
OBJECTIVE:
To explore the influencing factors and their relative significance in proxy online health information (OHI) seeking among the elderly with chronic illnesses so as to provide a reference for enriching theoretical research and optimizing care for the elderly with chronic illness.
METHODS:
Twenty-three elderly people with chronic illnesses participated in semi-structured in-depth interviews in this study. The interview transcripts were subject to three levels of coding (open, axial, and selective coding) based on grounded theory to determine the factors influencing proxy OHI seeking among the elderly and to understand how the main categories are interconnected. We used the interpretive structural modeling (ISM) process to analyze the hierarchy and associated pathways among the factors influencing proxy OHI seeking.
RESULTS:
From our analysis, we identified four main categories affecting proxy HI seeking: the health status, emotional needs, electronic HI literacy, and self-efficacy of the elderly. There were six subcategories that could be further subclassified into direct factors, key factors, and root factors, which constituted the hierarchical model of influencing factors.
CONCLUSION:
We found that proxy HI seeking among the elderly was directly triggered by self-efficacy and emotional needs following changes in their evaluation of health information and emotional needs, which originates from their perceptions of their health, concerns about their health, and information retrieval capability.
Introduction
With the ageing population in China and an increasing number of the elderly developing chronic illnesses, health services for the elderly have become a major concern. It is estimated that over 60% of elderly people in China suffer from chronic illnesses. They have significant needs for health information (HI) such as online medical consultation, disease prevention, and medical insurance. Proxy HI seeking has emerged across the globe as the popularity of the internet grows. The fundamental idea here is that family members or community doctors act as surrogates to search for online health information (OHI) and provide basic care services to the elderly who are dysfunctional or have limited knowledge and skills. In recent years, proxy HI seeking has also gradually become popular in China. According to Chinese scholars [1] and preliminary research surveys [2], the younger generation acting as proxy seekers for senior family members in many Chinese areas, especially in rural areas, has become a common practice.
Literature review
Current research on proxy HI seeking is in the exploratory stage. The available research results are not conclusive, and no relatively complete theoretical system has been formed based on the findings so far. The main research approaches for understanding proxy HI seeking have focused on behavioral characteristics, influencing factors, and theoretical explanation models. The influencing factors identified so far can be classified into three types: First, demographic characteristics of proxy seekers [3, 4] (age, gender, education, marital status, and so on); second, associated features [5, 6, 7], such as proxy seekers’ health status, skills as an intermediary agent, and a close or estranged relationship with the proxy-seeking recipient; third, motivation [8, 9], including self-affirmation, altruism, empathy, feeling of gratification, amongst others.
Based on the current research, the active behavior of proxy HI seeking and the factors that affect such behavior are relevant research priorities. Additionally, most previous research was carried out from the perspective of proxy seekers (close relatives) with only the study by Chen [10] looking at the perspective of proxy-seeking recipients (the elderly). However, Chen’s research sample of study participants was random, and “caring” active motivation and “help-seeking” passive motivation was not differentiated. To compensate for the above limitations, in this study, we chose the elderly with chronic illnesses as the study participants while keeping in mind the HI seeking context and unique aspects of the elderly population when studying factors influencing proxy HI seeking and the hierarchy of these factors. We hope that our study will add to the theories in this field, offer references for optimizing elderly chronic illness nursing and health services, and help put the Healthy China Initiative (2019–2030) into action.
In this study, we focused on elderly (aged 60 years or above) patients with chronic diseases, aiming to investigate the factors that influence health alternative search behavior, particularly those relevant to the elderly, such as their health status, self-efficacy, and family relationships. By understanding the hierarchical relationship between these factors, we aimed to would contribute insights that can optimize care for elderly individuals with chronic diseases and improve health services tailored to their needs.
Study participants and methods
Study participants
The concentration of elderly patients with chronic diseases in medical universities’ affiliated hospitals makes it easier to recruit study participants compared to enrolling volunteers from the general public. In this study, we interviewed patients with chronic illness who were treated between April and June 2022 in a medical university’s affiliated hospital. Inclusion criteria were as follows: (1) Patients who suffered from one or more chronic illnesses (based on the International Classification of Diseases-10 [ICD-10]). (2) Patients aged 60 years or above. (3) Patients who either had sought OHI on their own or had a family member do it for them. (4) Patients who had normal consciousness and could express themselves clearly. (5) Patients who voluntarily participated in the interviews. Participants with unconsciousness, speech disorders, or mental illness were excluded from this study.
Subjects were invited to participate in the study, and more than 50 individuals were screened. From this pool of volunteers, those who met the inclusion and exclusion criteria were recruited. The convenience sampling method was used in this study. We eventually included a total of 23 elderly people (mean age [67.87
Study methods
Drawing up the study design and interview guide
At present, there are only a few systematic studies on the factors influencing proxy HI seeking in China. Tang et al. [12] used a semi-structured in-depth interview model to study the knowledge related to breastfeeding in primiparous women. They determined the survey direction related to breastfeeding in advance, and then discussed the further content that needed to be investigated based on the specific situation of the interview. Similar methods were used to formulate open-ended questions in this study. We used qualitative research methodology for generating observations and conducting interviews on proxy seeking, followed by conceptualized description of these observations and interviews, and theory and model building. The preliminary interview guide was drafted by reviewing existing literature and preliminary survey conclusions of researchers, and was changed and revised according to expert suggestions.
The interview format mainly included information pertaining to the participants’ demographic details, information literacy, knowledge and skills, and factors influencing their behavior. The guide mainly consisted of open-ended questions. Some questions we included were: (1) How often do you use your mobile phone or computer to search for and browse information online? (2) Do you think OHI will help you with managing your health? (3) Can you tell on your own whether information you read on the internet is factual? Do you worry about being exposed to false information? (4) With respect to your recovery, how helpful is searching for OHI? (5) If you have trouble in seeking HI on your own, does your family help you or do it for you? (6) Under what circumstances do you turn to others for proxy HI seeking? Who do you turn to for it, and how do you use the HI? (7) Which health-related topics do you prioritize? What are the websites or services that you visit for HI?
The investigators conducting the interviews were doctors and nurses with relevant training. Prior to the interviews, the purpose and significance of the study were explained to the participants, and the researchers maintained a neutral attitude to avoid leading questions during the interviews. Throughout the interviews, the researchers guided the interviewees thoughtfully, encouraging them to share their genuine experiences. The interviews were conducted in Mandarin Chinese, and therefore no translation was needed.
Data collection and analysis approaches
We used semi-structured in-depth interviews (mean duration 20 minutes) for data collection. These conversations were recorded fully and transcribed into texts. Using NVivo12 software and grounded theory, the interview transcripts were subjected to three levels of coding (open, axial, and selective coding)
General information of the interviewees (
23)
General information of the interviewees (
and theoretical saturation tests to determine the primary factors influencing proxy HI seeking from the perspective of chronically ill the elderly. We adopted the interpretive structural modeling (ISM) process to analyze the hierarchy and associated pathways among the factors influencing proxy HI seeking and to construct the structural model.
Proxy seeking: The active proxy OHI seeking refers to non-medical professionals or non-medical related persons acting as a proxy for the elderly to search for OHI on their behalf due to their specific motivations or relationship obligations [1]. Influencing factors: Subjective and objective factors that have a major impact on proxy HI seeking and which basically denote factors related to the elderly, such as their health status, self-efficacy, and family relationships.
Participants were given complete information about the objectives and significance of this study before the interview. Researchers maintained a neutral stance throughout the interviews and avoided suggestive questions. This study was approved by the Ethics Committee of The First Affiliated Hospital of Jinzhou Medical University (No. 202247).
Statistical analysis
We used Excel 2019 for data entry and the SPSSAU 21.0 online analysis platform to calculate the reachability matrix, hierarchical decomposition, and so on.
Results
Open coding
Open coding is a process that helps to conceptualize and categorize the collected data. For more reliable coding, two researchers independently used the NVivo12 software to analyze and code source data verbatim and labeled the conceptualized data. This was mutually compared, analyzed, and modified. We thus arrived at a total of 6 categories and 81 initial concepts (Table 2).
Open coding
Open coding
Axial coding
Axial coding is used to further classify the open coding categories based on their underlying linkages, to logically extract principal codes. In this study, open codes (A1 perception of own health, A2 concern about one’s health, A3 information seeking capability, A4 evaluation of obtained information, A5 self-efficacy, A6 family affection) were integrated into four main categories (Table 3), namely, health status (A1, A2), electronic HI literacy (A3, A4), self-efficacy (A5), and emotional needs (A6).
Selective coding involves identifying and extracting the core categories from the four main categories, which includes establishing connections between the core categories and other categories. As shown in Fig. 1, the health status of elderly patients with chronic diseases impacts their emotional needs, while the e-health literacy of the elderly influences their self-efficacy. The interplay of emotional needs and self-efficacy subsequently prompts alternative search behaviors for health information. These alternative search behaviors are directly triggered by self-efficacy and emotional needs, and they are further influenced by the health status and e-health literacy of older adults.
Adjacency matrix A
Adjacency matrix A
Internal hierarchy of main categories of proxy health information seeking.
ISM is a tool that is useful for analyzing issues that involve a large number of elements with complex structures and interlinks. ISM converts chaotic structures into hierarchical models by breaking down complex systems, clarifying the relationship between each element, and hierarchizing each element [13]. In several studies [14, 15], the Structural Equation Model was used to conceptualize the framework of Occupational Safety and Health Management System, which is similar to the method used in this article. We also referenced the methods previously used in our research. In this study, factors that affected proxy HI seeking were analyzed, compiled, and categorized using grounded theory. Thus, we developed 4 main categories and 6 subcategories. We used ISM for the analysis and modeling of the hierarchy and to identify the associated pathways for each factor.
Adjacency matrix construction
We used the Delphi method to construct the adjacency matrix. Mutual relationships between six major influencing factors (A1 perception of own health, A2 concern about one’s health, A3 information seeking capability, A4 evaluation of obtained health information, A5 self-efficacy, A6 family affection). A 6
The calculation of reachability matrix and its internal hierarchy
We fed the adjacency matrix A into the online analysis platform SPSSAU21.0 to obtain a reachability matrix M (Table 5) and its reachable set R, antecedent set Q, and their intersection (Table 6). Three levels were obtained according to the principle of hierarchical division for result priority (R
Reachability matrix MFactors
Reachability matrix MFactors
Reachability matrix M’s reachable set, antecedent set, and their intersection
We constructed a hierarchical structure model (Fig. 2) of the factors influencing proxy HI seeking based on the hierarchy (Table 5). This model consisted of three levels: surface layer (direct factors), middle layer (key factors), and root layer (root factors).
Hierarchical model of factors influencing proxy health information seeking.
The hierarchical structure model of factors influencing elderly people’s OHI search behavior (Fig. 2) includes three levels: direct factors (A5, A6), key factors (A4), and root factors (A1, A2, A3). Alternative search behavior stems from elderly people’s perception of and concern for their health status, both of which are influenced by their ability to value judgments of health information, and can be directly triggered by self-efficacy and emotional needs.
Proxy HI seeking was directly triggered by self-efficacy and emotional needs of the elderly
During interviews, we found most elderly people with chronic illnesses had limited knowledge, skills, and low levels of literacy pertaining to electronic HI, and lacked self-belief in seeking OHI independently. They had favorable opinions of the practicability, simplicity, and effectiveness of OHI. Turning to their family members or friends for proxy OHI seeking, which is consistent with the psychological principle of least effort, was the preferred option for the elderly with chronic illnesses.
Another factor triggering proxy information seeking was family affection, with a close or estranged relationship between the elderly and their family being the key. In our interviews and surveys, we found that the elderly would discuss their health status with their family members in order to receive more attention from them (offspring), and they were able to obtain care and support from their family through such interactions. Other elderly people improved care-related interactions with their family members by sharing their opinions on the use of health products purchased by their family as a proxy.
Older and retired people are often unaccompanied at home. As they age, they frequently experience emptiness and loneliness due to their shrinking activity and socialization circles. They can also feel lonely, helpless, and anxious due to chronic diseases. Proxy HI seeking not only meets the health needs of the elderly, but also enhances caring interactions to a large extent.
Evaluation of obtained HI was the key factor influencing proxy HI seeking
The evaluation of the obtained HI by the elderly people included not only their evaluation of the OHI they obtained (for example, assessing the efficacy of a new drug), but also identifying complicated online information and eliminating bad information. Most elderly people who had previous proxy seeking experiences did not assess the quality and reliability of online information. They lacked self-belief in seeking such information independently and depended on the proxy of their family (offspring).
According to our interviews, most elderly with proxy-seeking experiences had harmonious relationships with their family. They had high trust and satisfaction with their children. In our study, we found that the trust from the senior generation was an important factor in promoting proxy information seeking, and this result was in line with conclusions from other studies. To be more specific, the elderly who had high trust and satisfaction preferred proxy HI seeking from their offspring; and in turn, the more the confidence that the senior generation has in them, the more willing is the younger generation to put in efforts for proxy OHI seeking with the goal of providing the senior member with information that is more straightforward and accurate. Therefore, evaluation and assessment of the information obtained directly affect self-efficacy in the elderly, and concurrently have an influence on family affection.
Perception of their own health and concern about one’s health were the root factors of proxy HI seeking among the elderly
All participants that we interviewed were elderly people with one or more chronic illnesses. During the interviews, they appeared well aware of their health status, attached great importance to OHI, and desired family affection in their daily life. Conversely, most elderly people in good health status did not give much thought to OHI, let alone understand its significance. They also did not require as much attention or concern from their families as the elderly with chronic illnesses did.
Perception of one’s health status and concern about their health in the elderly interact mutually. In our interviews, the elderly with proxy seeking had better knowledge about their health needs (such as rehabilitation devices, drugs, consumables, and so on). Concurrently, the elderly who knew their health needs well were more alert to changes in their health status brought about by rehabilitation devices and drugs.
Additionally, it is commonly believed that the elderly are limited in knowledge and skills, unable to search for information online, are not able to accurately assess or evaluate the obtained OHI, and lack self-belief in seeking information independently. However, one of the elderly respondents that we interviewed in our study had been independently seeking and buying diabetes drugs and consumables online for years. He turned to his children for proxy seeking only when he developed loss of vision. Our findings indicate that not all the elderly were unable to use internet. Some elderly people were capable of retrieving online information but this was limited to specific circumstances. This was consistent with previous research findings [16].
Thus, health perception and concern of the elderly are the strongest factors influencing proxy HI seeking. However, the majority of the elderly lacked sufficient information retrieval capability, and this must not be overlooked, hence we considered it relevant to classify information retrieval capability as one of the root factors.
Conclusion
In this study, we conducted semi-structured in-depth interviews of the elderly with chronic illnesses. The interview transcripts were then subject to three levels of coding (open, axial, and selective coding) based on grounded theory to preliminarily determine the factors influencing proxy HI seeking among the elderly and to identify how the main categories were interconnected. We adopted the ISM process to analyze the hierarchy and associated pathways among the factors influencing proxy seeking.
As revealed in our findings, proxy HI seeking among the elderly was triggered by self-efficacy and emotional needs following changes in their evaluation of obtained health information and emotional needs that were sourced from their perception of their own health and concern about their health. In addition, information retrieval capability had an important impact on evaluation of obtained information, and self-efficacy and was also one of the root factors. This study is the first of its kind where we clarified the factors influencing proxy HI seeking and their hierarchy from the perspective of the elderly with chronic diseases (proxy-seeking recipient). It adds to the existing pool of theoretical research that is available in the context of proxy seeking and provides a strong basis for care of the elderly with chronic illness towards optimizing online health services for the elderly.
Funding
The study was supported by the National Social Science Foundation of China (No. 20BKS009), Jinzhou Science and Technology Bureau (NO.JZ2023B059) and Jinzhou Science and Technology Bureau (NO.JZ2023B076).
Ethics statement
The study was conducted in accordance with the Declaration of Helsinki (as revised in 2013) and approved by the Ethics Committee of The First Affiliated Hospital of Jinzhou Medical University (No. 202247). Written informed consent was obtained from all participants.
Footnotes
Acknowledgments
The authors are particularly grateful to everyone who helped us with this article.
Conflict of interest
The authors declare that they have no competing interests.