The Turkish version of the SPPIC validated among informal caregivers with a Turkish immigrant background

Studies show that family caregivers often perceive caregiving as stressful or burdensome, especially those who take care of a person with dementia [1‐3]. Compared to other family caregivers, family caregivers taking care of a person with dementia are more often overburdened [4‐7]. Many studies show that the stress and pressure as a consequence of caring for a person with dementia can lead to poor health outcomes in family caregivers, including depression [8, 9]. In order to offer timely support and thereby prevent overburdening in family caregivers, it is important to have insight into their self-perceived care pressure. The model of carer stress and burden, as published by Sörensen and colleagues [10], combines several theoretical models of carer burden and stress, and is a commonly used theoretical framework for guiding caregiving research [10]. It entails well-documented primary and secondary stressors as well as background and contextual factors that relate to care burdens in family caregivers of people with dementia. A primary stressor in this model is the severity of the disease. As dementia progresses, problem behaviour as well as cognitive and functional impairment tend to worsen, increasing the pressure on family caregivers. Furthermore, the care situation, including the hours of care and the duration of care, is also one of the primary stressors. Spousal caregivers, sharing a home with a person with dementia, often provide long-term care on a day-to-day basis and are therefore more likely to experience a high self-perceived pressure from informal care than caregivers who live separately from the person with dementia [11]. Background and contextual factors that account for a higher self-perceived pressure from informal care in family caregivers, according to the model of carer stress and burden, include having a lower socioeconomic status (and therefore fewer resources) [10, 12‐14], being older, being a female caregiver and having a specific ethnic or cultural background compared to other ethnic groups [15].

Assessing the self- perceived pressure from informal care can help recognize those family caregivers who are especially in need of support. Various measurement instruments have been developed to assess self- perceived pressure form informal care among family caregivers [16‐18]. A validated and frequently used Dutch questionnaire for measuring the self- perceived pressure form informal care of family caregivers of people with dementia is the SPPIC (Self-perceived Pressure from Informal Care) [17]. The SPPIC was originally developed and validated in Dutch in 1995. The SPPIC measures the demands of the care situation as perceived by the family caregiver and in relation to the caregiver’s needs, such as time for other activities [19]. However, this version of the SPPIC is only available in Dutch. A Turkish version of the SPPIC is highly desirable as 12.7% of the Dutch population has non-Western immigrant backgrounds [19] and people with a Turkish background are the largest group within that category (https://​www.​cbs.​nl/​nl-nl/​achtergrond/​2016/​47/​bevolking-naar-migratieachtergr​ond). The first generation of immigrants with Turkish background have now reached the age at which dementia becomes increasingly prevalent. We assume that the self- perceived pressure form informal care in family caregivers with a Turkish background might be relatively high because (a) the care for a family member with dementia is preferred to be provided within the family circle, (b) beliefs regarding severe memory loss and ageing might make people refrain from seeking professional support, and (c) because the options for professional care and support are often not known [20].

For these reasons, we developed a supportive peer-group-based educational intervention to enhance knowledge about the disease dementia and about care and support options for family caregivers with an immigrant background [21]. We aimed to study the effects of this intervention on self- perceived pressure form informal care in family caregivers with a Turkish background. The translation and validation of the SPPIC in Turkish were part of this larger study, which included a pilot phase before the main study in order to test the feasibility, comprehensibility and appropriateness of the translated measurement instruments, including the SPPIC. The aim of the current study is to examine the internal consistency and the known group validity of the Turkish version of the SPPIC.

The aim of the current study was to evaluate the internal consistency and validity of the Turkish translation of the SPPIC. The SPPIC is a measurement instrument, originally developed and validated in Dutch, to assess the self- perceived pressure form informal care among family caregivers [26]. A pilot test was conducted to obtain insights into the feasibility, comprehensibility and appropriateness of the translated items of the Turkish SPPIC. All participants of the pilot test found the translated items of the SPPIC comprehensible, appropriate and feasible.

After the pilot test, a validation study was conducted to evaluate the internal consistency and validity of the Turkish translation of the SPPIC. The number of missing answers was low, which indicates that the participants understood the questions and were motivated to fill in the whole questionnaire. Research among ethnic minority populations is characterised by relatively high attrition rates [27]. In order to prevent both attrition and missing values, we applied various strategies: involving people with the same cultural background in the design of the research, pre-testing the questions and explaining in detail how the questionnaire should be completed.

Where study participants had the option of choosing between the Dutch and the Turkish versions of the SPPIC, a vast majority of participants chose the Turkish version, even though most of the participants were aged 55 or younger, and had often lived most of their life in the Netherlands. This finding is all the more relevant in the context of offering educational interventions to people with a Turkish immigration background. It is sometimes assumed that the second generation have a good command of Dutch but that when, as in this study, a choice is offered between completing a written questionnaire in Turkish or Dutch, the majority of the participants opt for the Turkish questionnaire. It is therefore recommended that the language preferences of the target group should be taken into account.

The internal consistency of the nine items of the SPPIC could be considered good based on the Cronbach’s alpha. However, the outcomes of the Confirmatory Factor Analysis, testing a single factor solution, indicated an overall moderate model fit, which could imply that a multiple factor solution might better fit the data. Although all items seemed to measure an aspect of self-perceived pressure from informal care, not all variance in the item scores could be explained by the underlying factor ‘self-perceived pressure from informal care’. This especially applied for the item “I must always be available for my […]”, which suggests that factors other than ‘self-perceived pressure from informal care’ might better explain variation in the scoring on these items. The strongest indicators of ‘self-perceived pressure from informal care’ seem to be the items that assess perceptions with respect to getting on with life (item 1); combining responsibilities (item 2); giving enough attention to others (item 3); personal independence (item 5). Most variance in these items can be explained by ‘self-perceived pressure from informal care’.

A possible explanation for the moderate fit of the single factor solution, is that self-perceived pressure from informal care aspects as addressed in the nine items of the EDIZ, are better indicators of self-perceived pressure from informal care in family caregivers with a Dutch background than in family caregivers with a Turkish migration background. When comparing the outcomes of our validation study with the outcomes of the validation study of the original (Dutch) version of the EDIZ, there are some notable differences in how participants responded to the nine items. Pot and colleagues [17] listed the nine items, with at top of the list the item that most participants agreed with (and that are therefore assumed to require the least pressure in order to make them agree) and at the bottom of the list the item that fewest participants agreed with (and therefore required the most pressure in order to make them agree). When listing the items based on the outcomes of our study according to the proportion that agreed with an item, we see a slightly different order (see Appendix 4). The main notable difference between our list and the list as presented by Pot and colleagues [17], is that relatively many participants in their study agreed with the item “Owning to the situation of my….I have too little time for myself”, whereas in our study we found that few people agreed with this item. This suggests that family caregivers with a Dutch background feel that their care duties start interfering with their life at an earlier stage than caregivers with a Turkish background.

In addition, our findings imply that agreement with the item “I must always be available for my […]” cannot be explained well by the latent variable ‘self-perceived pressure from informal care’. It could be that family caregivers with Turkish background might strongly agree with the statement that they always have to be available for their relative with dementia, regardless of the self-perceived pressure from informal care. This assumption is supported by the finding that the largest proportion of participants agreed with this item, perhaps including those who perceived little pressure. Among caregivers with a Dutch background, agreeing with this statement might be more strongly associated with a higher self-perceived pressure from informal care.

Based on these findings, more research is recommended on aspects that should be measured in order to obtain a more comprehensive insight into self-perceived pressure from informal care in family caregivers with a Turkish immigrant background.

In line with other studies [1‐3, 11, 28‐30], the current study showed that the intensity of providing family care is associated with the self-perceived pressure from informal care: frequently providing care is associated with a higher self-perceived pressure from informal care and this is even more so for spouses of a person with dementia. This is a relevant finding because providing family care is seen in Turkish immigrant communities as a task provided primarily by women [20].To prevent psychological and physical health problems in family caregivers [1‐3, 11‐13], it is important to signal a high self-perceived pressure from informal care in family caregivers.

Little is known about the self-perceived pressure from informal care and possible health effects in ethnic minorities. The SPPIC could be used to obtain more insights in this respect. However, a limitation of this study is that it only focuses on the validation of a Turkish translation of the SPPIC. For future research regarding family caregiving in ethnic minorities, it is recommended that there should be an evaluation of whether the SPPIC should be translated and validated in the mother tongues of other ethnic minority groups. As some languages are largely phonetic (Moroccan Berber), the main language of the country of residence might be more applicable for some ethnic minority groups.

Another limitation of this study is that the majority of the participants were female and it was not known if family caregivers were assisted in caring for the person with dementia by healthcare professionals (for instance home care) or other family caregivers. More research is recommended into the validation of the (Turkish) SPPIC among larger groups of male caregivers and to get a better understanding of the level of professional or family support received.

Furthermore we would recommend that additional studies be carried out using larger samples of participants in order to further document the validity and responsiveness of the Turkish SPPIC. Finally, it is also important to test Turkish version of SPPIC in other western European countries that are home to large communities of Turkish migrants (for example Flanders in Belgium, and France and Germany). Turkish migrants living in these countries have similar background characteristics, migration history and socioeconomic conditions to the migrants in the present study.