Association between family caregivers' primary care experience when they report as patients and their stress related to caregiving: A pilot cross‐sectional study

Abstract Background Few studies have examined whether family caregivers' own primary care providers can affect caregiving‐specific well‐being, such as caregiver stress. In this pilot study, we explored whether primary care experiences when family caregivers report as patients were associated with the stress of caregiving. Methods We used cross‐sectional data from a survey conducted in Japan between November and December 2020. We recruited family caregivers aged 40–74 years who were caring for community‐dwelling adults with chronic conditions. We assessed primary care experience using the Japanese version of the Primary Care Assessment Tool Short Form (JPCAT‐SF) and caregiver stress using the Japanese short version of the Zarit Caregiver Burden Interview. Results In total, 406 family caregivers were included in the analysis. The mean JPCAT‐SF total score was 42.1 out of 100 points. The proportion of caregivers who had higher caregiver stress was 48.8%. After adjusting for possible confounders, the JPCAT‐SF score was found to be significantly associated with caregiver stress (lower stress = 0 vs. higher stress = 1; adjusted prevalence ratio per 1 SD increase in JPCAT‐SF score = 0.89; 95% CI 0.80–0.98). Among the subscales of the JPCAT‐SF, longitudinality, and comprehensiveness (services available) were associated with caregiver stress. Conclusions Better primary care experiences when family caregivers reported as patients were associated with lower caregiver stress. Longitudinality, which includes focusing attention on the individual as a whole person, and comprehensiveness in the context of building provider‐patient relationships that make consultation easier when needed, were associated with lower stress.


| INTRODUC TI ON
With a rapidly aging world population and increasing incidence of chronic illness, older people rely increasingly on family members to support their daily activities, extending the roles and needs of family caregivers. 1 Family caregivers, also known as informal caregivers, refer to unpaid family members or important individuals who offer practical assistance to an ill or aged relative that cannot carry out essential tasks. 1 Family caregivers have reported more problems with psychological and physical health than noncaregivers. 2 In a cohort study, family caregivers who cared for a disabled spouse and reported mental or emotional stress had a higher mortality rate than non-caregivers or caregivers who did not report the stress of caregiving. 3 Thus, it is ideal for health care providers to consider the needs, wishes, and stress levels of family caregivers as well as the care recipients; this is especially expected in primary care. 4 Previous research has examined whether the support provided by care recipients' primary care providers can affect caregiving-specific well-being, such as caregiver stress, 5-7 but few have investigated the impact of caregivers' own primary care providers on their stress. Care recipients and caregivers are not always registered in the same general practice, even in countries with established gatekeeping systems, such as the United Kingdom. 8 In the context of care recipients' primary care providers, a prospective study conducted in the United States showed that family caregivers who reported greater support from care recipients' providers subsequently perceived caregiving as a more positive experience. 5 On the other hand, in the context of family caregivers' own primary care providers, a German study observed that 77% of caregivers who went to a primary care physician discussed their care situation. 9 Another German study showed that family caregivers perceived the support provided by their own physicians favorably in terms of psychosocial support. 10 Hence, we expected that family caregivers who received higher quality primary care as a patient may receive more psychosocial attention, including the context of their caregiving responsibilities, and consequently experience less stress related to caregiving.
However, to our knowledge, no study worldwide has specifically examined whether the support offered by those providers can affect caregiver stress.
Patient experience is recognized as a valid quality indicator of person-centeredness. 11,12 Person-centeredness, also known as patient-centeredness, means providing care that is respectful of and responsive to individual preferences, needs, and values. 13 Measuring patient experience is seen as a useful tool for assessing the quality of health care, 11 and this is particularly noticeable in primary care. 14 In this pilot study, we aimed to explore whether family caregivers' primary care experience when reporting as a patient was associated with their stress related to caregiving, using data from a cross-sectional survey.

| Design, setting, participants, and procedures
The cross-sectional data for this study were drawn from a crosssectional survey with several planned analyses in Ibaraki Prefecture, situated in the northeastern part of the Greater Tokyo Area, between November and December 2020. The survey recruited family caregivers caring for community-dwelling adults with chronic illnesses. The care recipients were using Japan's Long-Term Care Insurance (LTCI) system. Family caregivers were recruited consecutively through "care managers," who support the caregivers and their care recipients under LTCI. Data were collected using a selfadministered questionnaire. Family caregivers provided informed consent via the questionnaires and returned the questionnaires by mail to our university office.

| Inclusion criteria
Study participants were eligible for the survey if they were aged between 40 and 74 years, and were caring for a care recipient who had been using LTCI for ≥1 year. The reasons for setting these inclusion criteria are detailed in a previous paper. 15

| Exclusion criteria
Family caregivers were excluded from the study under two conditions: if they answered ≥2 questionnaires per person because a family caregiver caring for two or more people was instructed to only answer questions related to the care of the most dependent person; and if provided care with a frequency of "once or less in several days," 16 because those who provide less frequent care were considered to be more heterogeneous. These criteria are the same as studies from the survey. 15,17 Family caregivers without a usual source of care were also excluded from the study, as required by the scale assessing primary care experience (see below).

| Outcome variable: Family caregivers' stress related to caregiving
We assessed family caregivers' stress related to caregiving using the Japanese short version of the Zarit Caregiver Burden Interview (J-ZBI_8). 18 The Zarit Caregiver Burden Interview, 19,20 which was the original instrument for J-ZBI_8 is one of the most commonly used measures of caregiver stress. 21,22 The concept of caregiver stress is commonly used in the literature to describe the burden and strain that family caregivers experience related to caregiving. 21,22 J-ZBI_8 consists of eight questions on a 5-point Likert scale, with two factors: personal strain and role strain. Personal strain refers to how the caregiving experience is personally stressful, 23 including items such as "Do you feel angry when you are around this person?" and "Do you wish you could just leave the care of your relative to someone else?" Role strain refers to the stress because of the conflicting roles the caregiver has to manage in life, 23 including, for example, the item "Do you feel that your social life has suffered because you are caring for your relative?" Personal strain has five items, whereas role strain has three; therefore, the former accounts for a larger proportion of the scale's total score. The total score ranges from 0 to 32, with higher scores indicating a higher stress. A previous study showed that the J-ZBI_8 has good reliability and validity. 18 We used a cutoff score of 12/13 based on a previous study, which suggests that caregivers are at risk for depression if they score 13 or more. 24 2.2.2 | Explanatory variable: Primary care experience when family caregivers report as patients First contact is closely related to "access to care" and is measured in the JPCAT-SF by two items related to out-of-hours care in primary care. Longitudinality is evaluated by two items regarding whether the person feels that their physician recognizes them as a whole person. Coordination is measured by three items, asking about the experiences of referral to a specialist. If respondents answer that they have never seen a specialist or are unsure if they have been referred, 50 points (the middle number of the possible scores) are given.
Comprehensiveness (services available) is measured by two items regarding whether the person feels they can receive care for abuse and advanced care planning as needed. Comprehensiveness (services provided) is measured by two items regarding whether the person received advice on self-medication and health literacy. Community orientation is measured by two items regarding whether the person feels that their physician is interested in the needs and health issues of the community.
The JPCAT-SF score is the average of the six subscale scores and reflects the overall primary care experience, with higher scores indicating better experience. A previous study showed that the JPCAT-SF has good reliability and validity. 25

| Covariates
Covariates were selected based on clinical priority and a literature review to identify factors that may confound the association between primary care experience that family caregivers reported as patient and their stress related to caregiving. We included covariates for age, gender, relationships with care recipients, self-rated health, educational attainment, annual household income, average daily caregiving time, instrumental support from relatives or acquaintances, whether the family caregiver's physician and care recipient's physician are the same, and family caregivers' experience with care recipients' providers. Average daily caregiving time was determined using a question based on the Comprehensive Survey of Living Conditions (CSLC) questionnaire by the Japanese government. 16 According to the study using the Japanese version of the Zarit Caregiver Burden Interview, from which the J-ZBI_8 was derived, the average daily caregiving time strongly reflects the care recipient's activities of daily living deficits and was the factor strongly affecting caregiver stress (burden). 28 To assess instrumental support from relatives or acquaintances, we used the following item from previous research: "I have relatives or acquaintances who help me with errands" 29 because the extent of our questionnaire was limited. Participants chose from responses ranging from 1 (Disagree) to 5 (Agree). Whether the family caregiver's physician and care recipient's physician are the same was asked in the next question following the JPCAT-SF questionnaire: "Please tell us whether the physician is the same one who regularly provides medical care to the person being cared for." Family caregivers' experience with care recipients' providers was measured using The Japanese version of the Caregivers' Experience Instrument (J-IEXPAC CAREGIVERS). 30 J-IEXPAC CAREGIVERS is a scale that quantitatively evaluates the care of care recipients' providers, such as physicians, nurses, and care managers, from the family caregiver's perspective (ranging from 12 to 60).

| Statistical analysis
We calculated descriptive statistics for family caregivers' characteristics. A modified Poisson regression model was used to determine whether the JPCAT-SF score was positively associated with caregivers' stress related to caregiving. We analyzed the unadjusted association between the JPCAT-SF score and the outcome by calculating the crude prevalence ratio in bivariate regression.
In multivariate modified Poisson regression, the following variables were included as possible confounders: age, gender, relationships with care recipients, self-rated health, educational attainment, annual household income, average daily caregiving time, instrumental support from relatives or acquaintances, whether the family caregiver's physician and the care recipient's physician are the same, and family caregivers' experience with care recipients' providers. Variables except for JPCAT-SF score, age, instrumental support, and family caregivers' experience with care recipients' providers were divided into multiple categorical variables.
Instrumental support was treated as a continuous variable, based on Norman's argument for the validity of treating ordinal variables as continuous variables. 31 Additionally, we used the same model as in the primary analysis to perform analyses of the association between the scores for each of the JPCAT-SF subscales and caregiver stress. In the exploratory analyses, comparisons were repeated without Bonferroni correction. 32 We accounted for missing data in independent and dependent variables by using multiple imputations with a fully conditional specification. Statistical analyses were conducted using SPSS Statistics version 29 (IBM Corp).

| Participants' characteristics
Of the 1091 family caregivers recruited, 887 (81.3%) responded to the questionnaire, with 406 ultimately included in the analysis. Figure 1 shows the flow chart of the study participants. Table 1 shows the distribution of the 406 family caregivers' characteristics.

| Associations of the JPCAT-SF scores with caregiver stress
In bivariate (unadjusted) models, the higher the JPCAT-SF score, the more significantly lower was the caregiver stress (lower stress = 0 vs. higher stress = 1; crude prevalence ratio [PR] per 1 SD increase in JPCAT-SF score = 0.87; 95% CI 0.79-0.96). A study of family physicians and primary care teams in Canada also found that the continuity of primary care promotes relationships and trust between primary care providers and family caregivers, as caregivers who are patients usually return to the clinic. 33 Family caregivers may be positively influenced in their caregiving experience by person-centered, high-quality primary care.
Among the quality indicators of person-centeredness measured by the JPCAT-SF, our results showed that longitudinality and comprehensiveness (services available) can contribute to reducing caregivers' stress related to caregiving. We could make several hypotheses about the mechanisms of how these primary care attributes influence caregiver stress. In the JPCAT-SF, longitudinality is evaluated by whether the person feels that their physician recognizes them as a whole person. 25 Physicians who provide holistic care *Measured using the Japanese short version of the Zarit Caregiver Burden Interview (J-ZBI_8): lower, the J-ZBI_8 score < 13; higher, the J-ZBI_8 score ≥ 13.
**"I have relatives or acquaintances who help me with errands" with responses ranging from 1 (Disagree) to 5 (Agree).
***Measured using the Japanese version of the Caregivers' Experience Instrument (J-IEXPAC CAREGIVERS), with total scores ranging from 12 to 60.

TA B L E 2
Associations of the JPCAT-SF scores with caregiver stress (N = 406).

| CON CLUS IONS
We found that better primary care experiences when family caregivers report as patients were associated with lower caregiver stress.
In particular, longitudinality and comprehensiveness (services available) may contribute to reducing the caregiver stress. Despite several limitations, our findings suggest that high-quality primary care may provide positive experiences for family caregivers in the context of caregiver stress.

ACK N OWLED G M ENTS
The survey was supported by a grant from OTC Self-Medication Promotion Foundation, Japan (grant no. R2-3A-002). The authors thank the care managers for their cooperation in the survey. We also thank Editage (www.edita ge.com) for editing a draft of this manuscript.

CO N FLI C T O F I NTER E S T S TATEM ENT
The authors declare no conflict of interest in connection with this article.

PATI ENT CO N S ENT S TATEM ENT
All participants were volunteers and checked the box on the questionnaire indicating their intention to participate.

CLI N I C A L TR I A L R EG I S TR ATI O N
None.