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Development and preliminary validation of a questionnaire on the care needs of family carers of older individuals with disabilities in China: a mixed methods study

BMC Geriatrics volume 24, Article number: 706 (2024) Cite this article

Abstract

Background

Ensuring the wellness of older individuals with disabilities requires prioritising the care needs of their carers. However, current practice lacks validated tools to measure the needs of carers in home environments. Thus, this study aimed to create and test a questionnaire on the care needs of family carers of older people with disabilities in China.

Methods

We used a standard development process to generate the questionnaire. The pilot testing included cognitive interviews to ensure interpretation as intended. Furthermore, we used a cross-sectional study method to conveniently select 640 Chinese family carers of older people with disabilities from August 1, 2022, to June 11, 2023, for face-to-face investigation. Exploratory factor analysis (EFA) aided in project reduction and factor estimation, with 30 participants undergoing retest evaluations every two weeks. Confirmatory factor analysis (CFA) assessed the model’s structural validity, while internal consistency and retest reliability validated its accuracy.

Results

These tests established the model: content validity, item analysis and EFA. Six factors extracted from the initial analysis explained 62.891% of the observation variance. CFA showed good model fit, and the questionnaire had good reliability and validity. The final questionnaire included 21 items focusing on six dimensions: care assistance (three items), care environment (three items), care information (three items), formal support (four items), care ability (six items) and self-development (two items).

Conclusion

The care needs questionnaire effectively evaluates the needs of family carers in their caring activities.

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Background

The number and proportion of people aged 60 years and older in the population is increasing at an unprecedented pace worldwide. As global ageing rises, the number of older adults with disabilities is increasing [1]. Older individuals with disabilities refer to those who have limited or lost one or more activities of daily living and rely on the care of others.

Research shows that there were 52.71 million older people with disabilities in China in 2020 and estimates 77.56 million by 2030. Without preventive and control disability measures (such as early identification of high-risk groups of disability, improvement of health literacy of the older, enhancement of self-care ability, and improvement of the safety of the living environment), the number of older individuals with disabilities will increase to 97.50 million by 2050 [2]. However, China has not established a specialised socialised care system for older adults with disabilities, who will inevitably put enormous pressure on the country’s medical system and social economy [3].

As in most countries, home-based care remains the first choice for older people in China. Research suggests that home care may be the only form of care services for low-income older people and families [1, 4]. As the main force in older individuals with disabilities care, family carers are crucial to strengthening the informal family care system and building a good care service system [5]. Family carers undertake many tasks, such as daily care, physical rehabilitation and the provision of spiritual comfort, for older adults. They can effectively shorten the hospitalisation time of older individuals with disabilities, delay re-admission time, reduce the number of emergency department visits and minimise drug use [6]. Nevertheless, the heavy burden of care negatively impacts carers’ quality of life, which considerably diminishes their physical health and increases their risk of depression [7]. To facilitate the provision of special life care and reduce losses caused by accidents, most family carers live with their care recipients, bearing long-term physical and psychological pressure. Increasing pressure from informal care demands further limit the employment opportunities of carers, resulting in greater economic burdens [3, 8].

The pressure that affects the physical and mental health of carers spreads to the entire family and affects the stability of the whole family structure [9]. Therefore, a systematic and accurate understanding of the needs of family carers can help effectively solve caring problems, alleviate the pressure on family carers to the greatest extent and promote sustainable care for older people with disabilities. This is critical for carers, older populations with disabilities and even the entire families and society. Placing family carers in the healthcare system and objectively assessing their needs is necessary. However, few research practices properly analyse their care needs, which may be due to a lack of professional needs assessment tools.

The unmet needs of family cares have already been explored in high-income countries [4, 10]. Previous research has categorised the needs of carers of older family members with disabilities into two categories: needs arising directly from the conditions and behaviours of care recipients and needs indirectly resulting from these conditions and behaviours [11]. The needs of carers are reflected mainly in the maintenance of their physical and mental health, the acquisition of nursing knowledge and skills, the acquisition of medical resources and information and the balance between care and self-development [8, 12]. This study aims to focus on care needs refer to the relatively stable requirements put forward by carers in care activities to maintain the health, well-being, and existing physical condition of older people with disabilities, reflecting their internal physical and mental health, external living conditions, and personal development.

Currently, numerous countries in the Global North are increasingly recognising the importance of supporting carers by offering respite services, home care services and assistance through the evaluation of family resources [10, 13, 14]. However, there are considerable differences in care resources between countries in the Global North and Global South [5]. Individuals in the Global South continue to receive limited support for family carers due to financial constraints and the lack of developed formal geriatric care systems. China, as the largest country in the Global South, provides formal or informal private care services only to a few areas with favourable economic conditions, with services particularly lacking in impoverished rural localities. These carers in this context face greater pressure and have different needs than those in the Global North [5, 13].

Many countries in the Global North also primarily link policies that support carers to services for care recipients rather than consider the needs of carers as equally important [4, 10]. Therefore, the support provided to carers is often inadequate. In contrast to government support, a more effective approach to developing appropriate care support strategies involves more extensively engaging with communities, identifying the specific needs of carers and collecting realistic feedback. In mainland China, even if there are a few general scales on carers’ needs, the lack of complete reliability and validity testing [15], the presence of cumbersome items [16], cultural restrictions [17] and other reasons discourage the wide use of these instruments.

Traditionally, research on care needs has focused on specific diseases or conditions, leading to the isolation in care research [18]. Most existing carer assessment tools are used to evaluate the needs of carers of older adults whose disabilities relate to specific illnesses. For example, in the needs assessment questionnaire for carers of patients with stroke [19] and dementia [20], the items centre on the diseases’ characteristics. Although family carers have many similar experiences and needs [21], older people with disabilities may differ from people afflicted with certain diseases in terms of relevant care issues and complexity of care required [22, 23]. Family carers of older individuals with disabilities face greater physical, psychological, family and social pressures, so they need more attention and support. Tools devoted to specific disease cannot be directly used to assess the care needs of family carers who attend to older people with disabilities. Scholars have developed a universal needs scale from the perspective of such carers, but this scale concentrates only on health needs [24]. Therefore, it is important to summarise the multiple conditions that cause disabilities in the development of scale items, striving to systematically and concisely measure the needs of participants.

Given the inadequacy of assessment tools in practice, we aimed to develop a systematic and relatively comprehensive tool that meets the characteristics of countries in the Global South (such as China) from theoretical and practical levels, urging the provision of targeted interventions.

Methods

This study followed the systematic seven-step design process proposed by Artino et al [25] for creating high-quality survey scales to develop questionnaires as follows: (1) conducting a preliminary literature review, (2) conducting interviews, (3) summarising through a comprehensive literature review and interviews, (4) developing survey items, (5) conducting expert verification, (6) conducting cognitive interviews and (7) conducting pilot testing.

Questionnaire Development

The development of the needs questionnaire in this study was based on existence, relatedness and growth (ERG) theory [26]. ERG theory serves as a valuable framework for dealing with the problem of how need satisfaction is related to need strength and classifies human basic needs as existence, relatedness and growth needs. Existence needs encompass all material and logical physiological desires, such as health protection, property and environmental safety maintenance. Relatedness needs refer to those required to maintain important interpersonal relationships, including interpersonal maintenance, emotional belonging and other aspects. Growth needs pertain to an individual’s inherent desire for development, which encompasses improving problem-solving skills, achieving ideals, and cultivating self-esteem.This theory fits well with the definition of real-life issues related to care needs and can effectively cover the research issues relevant to such requirements.

We searched for relevant studies in the Web of Science, PubMed, Scopus, Springer, China National Knowledge Infrastructure, the China Biomedical Literature Database and the Wanfang Database using keywords such as ‘older individuals with disabilities’, ‘family carer’, ‘informal carer’, ‘care need’, ‘long-term care’, ‘questionnaire’, ‘scale’, ‘instrument’ and ‘tool’. We also consulted relevant policies of the World Health Organization, Europe, America, Japan, South Korea, China and other health committees on care service systems for older people with disabilities [4, 5, 10, 13, 14] to define pertinent concepts and construct initial questionnaire entries.

The results of the literature review indicated that the care needs of family cares encompass various aspects, including physical and mental health protection, economic support, environmental safety maintenance, care assistance, social support, psychological and emotional well-being, information acquisition and utilisation, life care knowledge and skills, emergency response and occupational development. The three types of needs categorised under ERG theory can effectively address issues relevant to care needs. We summarised 50 items after a thorough review(Appendix A).

We interviewed carers after the review of the relevant literature and policies to supplement potential questions beyond those identified in the analysis of previous studies. We asked them about their daily care procedures as well as the main difficulties encountered in caring for older individuals with disabilities and their care requirements, which cover physical, psychological, social and other needs. Each interview lasted for about 20 min.A specially assigned person recorded and transcribed the interviews content into text, which supplemented the questionnaire items after thematic analysis.To quantify the care needs of carers from multiple perspectives, qualitative interviews with 10 respondents were followed by a division of interview topics on the basis of ERG theory and the development of a conceptual framework. This process resulted in an additional four items, after which we identified 54 items as the initial components for the questionnaire. These items were distributed across nine conceptual areas (Appendix A).

Subsequently, we recruited 20 experts [27] using purposive sampling for two rounds of expert consultations to evaluate the relevance of each item to the evaluation of care needs, whether the wording of the item was appropriate and whether the item covered all aspects of care needs. The research fields of experts included elderly care, clinical chronic disease care, nursing psychology, elderly sociology, elderly public opinion, etc. The experts discussed all items in two rounds, removing redundant items and items with ambiguity and modifying or merging jargon to obtain clear items.

We then ran a pilot test with a sample of 20 eligible carers, who did not participate in the other stages of the study. We conducted cognitive interviews covering 20 research subjects. We reviewed on-site notes and interview records to summarise the participants’ reactions and formulated suggestions for modifying, clarifying or deleting items.

Sampling and data Collection

In this study, family carers were defined as family members who provide core care services to older people with disabilities in a home environment and have primary responsibility for them. From August 1, 2022 to June 11, 2023, we used convenience sampling to select target carers in 158 communities located in four cities (Wenzhou, Zhoushan, Pingxiang and Nantong) in Southeast China.

According to the requirements for a structural equation model, when the number of questionnaire items is less than 40, at least 200 participants should be used for model construction [28], and 300 participants should be adopted to validate a constructed model [29]. The initial questionnaire contained 29 items. We preliminarily selected 500 participants for the two-factor analysis samples.

The inclusion criteria were as follows: (1) The carer takes care of older adults with disabilities aged ≥ 60 who have resided in the community for ≥ 3 months and have no history of severe cognitive impairment or mental illness; (2) they are family members responsible for the primary care tasks at home with a care period of ≥ 3 months; (3) they are at least 18 years old; (4) they can communicate and can complete the questionnaire independently or with assistance; and (5) they are aware of the purpose of the investigation and voluntarily participated. The exclusion criteria were paid nannies or carers, people with a history of mental illness and/or individuals unable to cooperate with the investigators.

We obtained permission form local community leaders before conducting household surveys. Specially trained investigators then surveyed eligible households. We determined the primary carer by directly asking household members whether they fulfil this responsibility. If multiple carers met the abovementioned requirements, we conducted further screening by identifying whether the individual (1) spent most of their time caring for an older person and (2) fully participated in the diagnosis and treatment processes for age-related diseases or the handling of emergencies.

We used unified guidelines to explain the survey’s purpose, significance and questionnaire-filling requirements to the respondents before conducting the survey face-to-face. The investigator first used questionnaires for older people with disabilities (i.e. the General Information Questionnaire, BARTHEL Index Scale and AMT-10 Scale) to assess the conditions of the population of interest and determine their disabilities and cognitive statuses. Compared with carers of older individuals with non-cognitive impairments, those of older people with cognitive disabilities experience more physical and psychological pressure, with a substantial difference in their care needs [6, 30]. Thus, it is necessary to study the care needs of family carers of the older with severe dementia as a specific group. Accordingly, this study excluded carers of older people with cognitive impairments (AMT-10 score < 4 points). The survey subjects completed the questionnaire independently. The investigator read the questionnaire to those with difficulties completing it independently and populated the survey with their oral responses. The investigators immediately collected all the completed questionnaires. The data collection lasted for approximately 30 min.

The University Ethics Committee (Ethics Number: 2022-029) approved this study, and all the participants signed a written informed consent form before participating.

Study instrument

The questionnaire included three parts: (1) the demographic and sociological data; (2) the survey for older individuals with disabilities and (3) the care needs of family carers for older adults with disabilities. After the literature review, we set the demographic and sociological information to cover the participants’ genders, ages, occupations, marital statuses, religious beliefs and educational levels. The survey for older individuals was incorporated with Barthel index scale [31] to assess their disabilities and the AMT-10 scale [32] to assess their cognitive statuses.

We conducted two rounds of expert inquiries into the initial items of the Care Needs of Family Carers for Older with Disabilities questionnaire on the basis of the literature, policy research and in-depth interviews with family carers. Guided by ERG theory, the questionnaire was crafted, covering eight dimensions: care assistance, care benefits, care environment, care information, interpersonal interaction, care knowledge, care skills and self-development. The initial questionnaire comprised 29 items measured on a five-point Likert scale ranging from 0 (completely unnecessary) to 4 (highly needed). The total scores possible in this questionnaire ranged from 0 to 116. The higher the score, the stronger the carer’s need for care.

Data analyses

We assessed the content validity of the questionnaire using Microsoft Excel. We calculated the content validity index (CVI) by dividing the CVI of a single item (I-CVI) by the CVI of the whole scale (S-CVI/Eve). If I-CVI > 0.79, the item was regarded as acceptable; 0.90 is the acceptable level for S-CVI/Ave [33]. Two individuals entered the sample data into EpiData 3.1; We excluded incomplete questionnaires, used the software’s built-in functionality for consistency testing and then exported the data onto SPSS 26.0 (IBM Statistics) software and AMOS 26.0 for exploratory and confirmatory factor analyses.

We used SPSS 26.0 for demographic feature description, item analysis and exploratory factor analysis (EFA). We expressed descriptive statistics in figures and percentages. First, we carefully screened and modified the items via item analysis methods, mainly discrete degree analysis, the critical ratio (CR) method, correlation analysis and homogeneity testing. Each item was considered for deletion if its standard deviation (SD) was less than 0.8, indicating a small dispersion trend and poor discriminative ability. The CR method was used to compare the significance of the average difference between high and low groups in each item to eliminate items that could not effectively distinguish the care needs of different carers. A CR value less than 3.0 indicates that the discrimination of the items is weak and warrants exclusion [34]. We selected the top 27% with the highest total score as the high group (n = 63) and the bottom 27% with the lowest total score as the low group (n = 63). We conducted an independent sample t-test analysis on the scores of the high and low groups on each item, excluding items with a cut-off value (CR value) less than 3. Pearson correlation analysis was performed to ascertain whether the coefficient of correlation between each item and the total score reached a significant level, with a correlation coefficient of r ≥ 0.3 as the minimum selection criterion [35]. We deleted questions to which the responses had low homogeneity; with the specific standard being the Cronbach’s α coefficient. If the coefficient increased after item deletion, we excluded the item [36].

After the item analysis, we performed Kaiser–Meyer–Olkin (KMO) and Bartlett sphericity tests to evaluate sampling adequacy. The KMO value was greater than 0.60 [37], and Bartlett’s spherical test value was significant, indicating suitable factorial analysis. Next, we conducted principal component analysis in conjunction with the maximum variance orthogonal rotation method to extract common factors according to an eigenvalue (> 1), eliminate items with a factor loading < 0.5, improperly classified or unnamed items and items a maximum loading of two or more factors > 0.5 [38]. We also took the total variance interpretation rate of the original data to 50–75% as the standard [38], to ensure the uniform naming of items under each factor and reserve at least two items under each factor [39]. The Pearson correlation coefficient reflected the degree of correlation between the dimensions and the questionnaire. An r ≥ 0.6 indicates a strong correlation, while an r ≤ 0.4 points to a weak correlation [40].

Confirmatory factor analysis (CFA) involves the use of the maximum likelihood method. To test the model, we employed the chi-square and degree of freedom ratio (χ2/df) as standard indicators: the smaller the value, the better. The root mean square error of approximation (RMSEA), standard root mean square residual error (SRMR), goodness of fit index (GFI) and adjusted goodness of fit index (AGFI) served as the basic indicators for evaluating model fit. This study adopted a χ2/df < 5, RMSEA < 0.08, SRMR < 0.08, GFI > 0.9 and AGFI > 0.85 as the evaluation criteria [29, 41, 42].

Internal consistency was measured using Cronbach’s α. The higher the Cronbach’s α coefficient, the more significant the consistency between items. However, an excessively high value indicates redundancy between items. We therefore used an evaluation criterion of greater than 0.6 but less than 0.9 [43]. Intraclass Correlation Coefficient (ICC) represents a test’s stability and consistency over time. An ICC greater than 0.75 indicates good retest reliability [44]. A p < 0.05 is regarded as indicative of statistical significance.

Results

Content validity

We sent the first round of 54 items to 20 experts in the relevant fields. After receiving feedback from all experts, we deleted the financial information (I-CVI = 0.65) items in the care information dimension. The I-CVI of the remaining entries was 0.85-1, and the S-CVI/Ave was 0.94. We merged the dimensions of psychological support and social group support into the dimension of interpersonal interaction. In the care assistance, care environment and care information dimensions, we added an entry for respite care, care service for intelligent older individuals and information on auxiliary equipment rental, respectively. We modified six entries and merged 40 entries into 14 entries. The first round of correspondence therefore yielded a questionnaire with eight dimensions and 30 entries. In the second round of correspondence, 18 experts responded, with I-CVI ranging from 0.89 to 1 and S-CVI/Ave ranging from 0.99 to 1. Based on the expert suggestions, we merged two items into one, and the subsequent discussion among the research team left us with a second version comprising 29 items (Appendix B).

The 20 pilot test subjects were 70.65 ± 13.10 (37–89) years old, mainly female (n = 12, 60%), with 65% having primary school education or below. The cognitive interviews showed that the questionnaire entries are clear, unambiguous and understandable. This provided us the final trial version questionnaire in the main research.

Cross-sectional study

Study sample

This study interviewed 660 carers in total, with nine participants withdrawing from the survey and 11 questionnaires having > 20% missing data. This left us with 640 valid cases, corresponding to a questionnaire effectiveness rate of 97.0%. Ultimately, we subjected 231 cases (Sample 1) to EFA and 409 (Sample 2) to CFA.

The average age of the participants was 64.5 ± 14.13 (18–95) years. The average age of Sample 1 was 61.95 ± 14.11 (18–92) years, and the average age of Sample 2 was 65.96 ± 13.97 (20–95) years. More than half of the participants in Sample 1 were over 60 years old (60.6%), and the vast majority of the caregivers were married and cohabiting (88.3%). More than half of the participants acquired primary school education or lower (57.1%). Nearly 70% of the participants in Sample 2 were older than 60 years (68.5%), more than 90% of the caregivers were married and cohabiting (90.4%) and more than 60% had education levels of primary school or below (61.4%) (Table 1).

Table 1 Demographic and social characteristics of family caregivers(n = 640)
Full size table

Exploratory Factor Analysis

As previously stated, 231 cases were subjected to EFA. After item analysis for 29 questionnaires, we found that the SD of each item ranged from 0.839 to 1.251 and that the CR values of each item were greater than 3 (t = 4.601–12.177, p < 0.01) in their respective dimensions. The total correlation coefficient of the items showed that except for item 7(flexible work, r = 0.253) and item 29 (adapting to social development, r = 0.288), all other items were greater than 0.3 (p < 0.01). The Cronbach’s α coefficient showed that items 7 and 29 fell short of the standards. Considering that our survey sample consisted primarily of unemployed older individuals, the demand for these two items is non-significant in terms of performance, driving their deletion prior to the EFA. The KMO of the now 27-item questionnaire was 0.865 (χ2 = 2327.875, p < 0.001), indicating suitability for factor analysis.

The EFA revealed that the factor loadings of six items were less than 0.5: care education information, enhancing good interaction with older individuals, medical information, home-based ageing renovation, maintain relationships with informal supporters and respite care. The sample predominantly comprised married, childbearing and less educated older individuals residing in stable communities with dwindling social networks impacted by the inclination towards settling down and the reluctance to relocate. Thus, the aforementioned items were deemed unsuitable for this group. Following discussions within the research team, these items were removed.

On the basis of the EFA results, we assigned each item with a load value ≥ 0.5 to an extracted factor after excluding the six items that failed the inspection: KMO = 0.833 (χ2 = 1670.726, p < 0.001). The cumulative variance interpretation rate of the six-factor structure was 62.891%. Table 2 details the results of the EFA.

Table 2 EFA results
Full size table

In the 21-item questionnaire, the items were grouped according to the theoretical framework. The dimensions of care knowledge and care skills were merged into the dimension of care ability. Items 5 (care subsidies) and 6 (special allowances) originally belonged to the care benefits dimension. The EFA results necessitated their reclassification as items 16 (older adult care assistance policy) and 20 (establish a relationship with formal supporters). As they collectively reflect the support provided by formal institutions, we named this dimension ‘formal support’ and deleted the original care benefits aspect. Each item’s distribution in each dimension was highly consistent with the previous conceptual framework. The correlation between each dimension of the questionnaire and the total score (r = 0.596–0.803) and the correlation between the dimensions (r = 0.168–0.518) reflected the questionnaire’s appropriate construction and dimensional discrimination.

We extracted six factors: care ability (six items), formal support (four items), care environment (three items), care assistance (three items), care information (three items) and self-development (two items).

Confirmatory factor analysis

We subjected 409 cases to model fit validation. The results of the CFA showed that the six-factor model for the 21 items had good fit (χ2/df = 2.571, RMSEA = 0.062, SRMR = 0.077, GFI = 0.906, AGFI = 0.875). The standardised factor load was acceptable (range: 0.368–0.827) [38] and statistically significant (p < 0.001).

The mean (SD) of the total scale scores was 2.24 (0.49). The means (SDs) of the subscale scores on care assistance, care environment, care information, formal support, care ability and self-development were 2.17 (0.76), 2.14 (0.75), 1.73 (0.83), 2.75 (0.73), 2.29 (0.73) and 2.23 (0.77), respectively.

Reliability analysis

The Cronbach’s α coefficient of the 21-item scale was 0.857, indicating reliable internal consistency, with each dimension coefficient ranging from 0.604 to 0.824. The ICC for the 30 participants who completed the questionnaire twice within two weeks ranged from 0.929 to 0.998. In summary, the overall reliability of the questionnaire and the reliability of the various dimensions were good (Table 3).

Table 3 Cronbach ‘s α coefficient (n = 640) and ICC (n = 30)
Full size table

Discussion

Compared to previous questionnaires focusing on carers’ needs for care knowledge and skills, this survey questionnaire is the first to focus on the needs of carers of older individuals with disabilities in China in a home environment from the dimensions of ERG, which is of great help in objectively evaluating their care needs. This study adopted a standard questionnaire preparation process to ensure questionnaire quality. We decided on which contents to include in the questionnaire by relying on, for example, high-quality literature, the latest policies, mature theories, expert correspondence and small-scale pre-surveys. Simultaneously, the questionnaire was inspired by emerging themes of domestic policies, such as the future communities piloted in urban areas and the villages on the cloud promoted in rural areas.

The EFA identified six dimensions and 21 items. The included items effectively reflect the existing care needs of family carers, covering three aspects of ERG theory. Specifically, existence needs include the dimensions of care assistance and care environment. In contrast, relatedness needs comprise the dimensions of formal support and care information, and growth needs cover the dimensions of care ability and self-development. The analysis of the results showed that the structural equation model had good fit and that all the reliability indicators were good.

The study determined eight items unsuitable for the scale (see item analysis and the EFA). While we deleted these items in subsequent analysis, this does not mean that they are unnecessary. They might have special environmental or policy implications; therefore, future research should re-investigated the eliminated items. As the generation of ‘sandwich carers’ increases, the youthfulness of carers is inevitable [18]; thus, flexible work is highly likely to become an indispensable issue.

Notably, over 60% of the carers in this study were over 60 years old, nearly 90% of them have lived with older people with disabilities for a long time, more than half had education levels of primary school or below and the majority were spousal carers. These may be characteristics common to carers in the Global South. Therefore, the questionnaire developed in this study may be applicable not only to carers of older people with disabilities in China but also to those in other countries in the Global South.

Carers at different stages of life (e.g. adolescence, adulthood and old age) may exhibit differences in their care needs across the six dimensions (i.e. care assistance, care environment, care information, formal support, care ability and self-development needs) due to the varying responsibilities assigned to them by age. In this study, the carers had the lowest need for care information, with the respondents earning an average score of 1.73 and an SD of 0.83 for this item, potentially due to their ages and low educational levels. They may have insufficient awareness or ability to obtain information, which affects their ability to obtain timely and effective information support. This finding implies that healthcare practitioners should, in addition to proactively educating patients about the essentiality of acquiring care information, furnish them with a list of accessible care data to assist them in selecting the details they deem essential. The carers expressed the highest need for formal support, with the participants gaining an average score of 2.75 and an SD of 0.73. This result indicates that they expect formal organisations or institutions to provide more effective, timely and excellent support services to meet their actual needs during the care process.

At present, the questionnaire on the health needs of family carers of older adults [24] is the most widely used by Chinese scholars. This questionnaire focuses particularly on the health needs of caregivers, but existing research has not verified the model’s stability. The questionnaire designed in the current study aligns with current development trends in its concentration on the family carers of older individuals with disabilities, including their physical and mental health. It considers their care environments, interpersonal interactions and self-development, resulting in a more comprehensive assessment of the needs that arise throughout the care process and better guidance for relevant personnel to provide targeted support and assistance to carers.

In summary, this questionnaire comprehensively evaluates the existence, relatedness and growth needs of family carers. The evaluation is comprehensive, and the dimensions are clearly defined, which can rapidly quantify the needs of family carers and provide a reference for healthcare departments to formulate appropriate support strategies and allocate care resources reasonably. The upshot of all these is improvement in the provision of support for older people with disabilities.

Notwithstanding the insights derived in this work, it is encumbered with several limitations. First, although the research team made every effort to recruit subjects from multiple regions in China, the care needs discussed here may not be representative of all carers. Second, we collected only the self-reported data of carers of older adults with disabilities, disregarding objective indicators that can reflect their needs, such as various physiological indicators that change with care activities and the carers’ family population structures. Finally, the questionnaire is suitable for survey research in the current context. As the family care population grows younger and more diverse, researchers may need to improve the questionnaire’s contents.

Conclusion

This study developed the Care Needs Questionnaire for Family Carers to assess the needs of Chinese family carers of older family members with disabilities. The questionnaire, comprising six sub-dimensions and 21 items, showed good internal consistency, aggregation validity and discriminant validity. Future research can confirm the effectiveness and practicality of the scale for other regions in China and the Global South. By identifying priority areas for supporting carers of older individuals with disabilities and their families, the results of this survey-based research can indirectly contribute to the formulation of policies concerning the care of older adults with disabilities.

Data availability

The datasets used and analyzed during the current study are available from the corresponding author on reasonable request.

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Acknowledgements

We greatly appreciate the participation of the older adults and their family caregivers as well as the support from the personnel and authorities of the involved communities.

Funding

This work was supported by the Key Fund project of China National Philosophy and Social Science (Award Number: 21ARK002).The content is solely the responsibility of the authors and does not necessarily represent the official views of the funding organizations. The funders had no role in the study design, data collection, data analysis and interpretation, writing of this manuscript, or decision to submit for publication.

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Authors and Affiliations

  1. College of Nursing, Wenzhou Medical University, Wenzhou, 325035, Zhejiang, China

    Chuncong Zhou, Yi Fang, Enjie Zheng, Lijuan Zhu & Zhiqin Yin

  2. Qidong Traditional Chinese Medicine Hospital, Qi Dong, Jiangsu, 226200, China

    Yanling Lu

  3. Wenzhou Health Promotion Research Center, Wenzhou, China

    Zhiqin Yin

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  1. Chuncong Zhou
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Contributions

CCZ contributed to the study conception/design, data acquisition/analysis and thorough interpretation, drafting, and critical review of the article. ZQY, YF, EJZ, LJZ and YLL contributed to study conception/design, data analysis and thorough interpretation, critical revision, and supervision. All authors have read and approved the final version of the manuscript.

Corresponding author

Correspondence to Zhiqin Yin.

Ethics declarations

Ethics approval and consent to participate

The questionnaire and methodology for this study was approved by the Human Research Ethics committee of the University of Wenzhou Medical University Ethics Center(Ethics approval number: 2022-029).The participants were informed about the research goals, the process of participation and its voluntary nature, data collection method, the right to withdraw from the study at any time and without giving any reason, and confidentiality of any disclosed information. Subsequently, written informed consent was obtained from all the participants. All methods were carried out in accordance with relevant guidelines and regulations.

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Not applicable.

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The authors declare no competing interests.

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Zhou, C., Fang, Y., Zheng, E. et al. Development and preliminary validation of a questionnaire on the care needs of family carers of older individuals with disabilities in China: a mixed methods study. BMC Geriatr 24, 706 (2024). https://doi.org/10.1186/s12877-024-05294-6

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Keywords

BMC Geriatrics

ISSN: 1471-2318

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