Instruments in general practice to identify and to measure (over)burden due to informal care for caring relatives: a scoping review protocol
Early identification, intervention and coordination of adequate measures may help to prevent negative health effects due to burden caused by providing informal care. An increasing level of informal carers’ burden is an important factor because it determines to a large extent various outcomes such as health, a higher risk of mortality, institutionalisation, caregiving style and abusive behaviour. Despite recommendations and existing instruments in general practices that identify carers and their needs, many of them remain unidentified. This situation is aggravated by the fact that informal carers rarely self-identify as such and request support, as they often do not care for their own needs and burden. As a result, they remain largely unsupported, which increases the risk for secondary physical and psychological morbidity from caregiving and leads to numerous negative consequences such as declines in physical health, mental health concerns and less quality of life. Additionally, caregiving often leads to financial strain and increased financial costs to the family and the healthcare system. The COVID-19 pandemic also complicated the support of family caregivers and the need for improvements in identification, communication and navigation increased. The identification of carers is complex and further complicated if, for example, patients and carers are not registered in the same general practice. Although the need to identify informal carers at an early stage is well known and has been established in policy and practice for a longer time, the support informal carers receive through general practice is weak. Several recent studies conducted by Wangler and Jansky show that the wishes of caregivers regarding an early approach by the general practitioner (GP) practice are frequently not fulfilled. Less than 50% of caregivers (42%) report having been promptly identified by their GP. In only 18% of cases, the responsible GP approached the caregiver proactively. Qualitative interviews Wangler and Jansky conducted with 37 caregivers also stated that they initially feel an uncertainty about whether their needs and problems should be a matter for GP support. This hesitance sometimes leads to problematical situations. The results from these interviews match those of other studies, which showed that early and systematic identification of family carers remains challenging in the daily general practice setting. Some standardised and validated instruments for the identification and recording of care-related burden exist, for example, the Zarit Burden Interview (long/short) or the Burden Scale for Family Caregivers (BSFC—short/long), which was originally developed for German-speaking countries. The BSFC-s (short version/10 items, long version/28 items) is now available free of charge in over 20 languages ( www.caregiver-burden.eu ). The 10 items of the BSFC-s (short version, see http://www.caregiver-burden.eu ) are rated on a scale from o (strongly disagree) to 3 (strongly agree). The score ranges from 0 to 30 points. Higher scores indicate a greater (subjective) caregiver burden. Although the reliability and validity of the BSFC-s for measuring subjective burden in informal carers have also been demonstrated, this scale is barely used as a screening instrument in general practice. For this reason, we intend to provide an overview of existing instruments with a focus on their actual use in general practice. In addition, characteristics of successfully implemented instruments are summarised to give recommendations for adaptations. 

This protocol uses the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist and the Joanna Briggs Institute (JBI) Reviewer’s Manual to describe the objectives, eligibility criteria and methods of the planned scoping review. We will conduct a scoping review to gain a better understanding of whether and how existing instruments to identify caring relatives and to measure their burden are used. We will also focus on the characteristics of those instruments and what this means for the implementation in general practice to draw conclusions for improving the implementation and usage of existing instruments. For this scoping review, the Arksey and O’Malley five-stage framework for conducting scoping reviews including the following steps was used: identifying the research question (1), identifying relevant studies (2), study selection (3), charting the data (4) and collating, summarising and reporting the results. Objectives Main objective: What tools are used to assess and identify caregiver burden at an early of caregiving in general practice? Secondary objective: Which factors and characteristics of instruments are associated with a systematic use and successful implementation in general practice as well as barriers limiting the implementation? Information sources To answer our central research questions, we use an iterative search strategy involving the search for data in four electronic databases (PubMed, LIVIVO, the Cochrane Library, CINAHL) from inception to June and July 2023 and the reference lists of key studies to identify any studies eligible for inclusion The time period was deliberately not narrowed down in order to completely include recent research and to present the state of knowledge as comprehensively as possible. Search A preliminary search was performed in PubMed using database specific Boolean operators based on the inclusion and exclusion criteria summarised in using the terms (and their synonyms) ‘General Practice’ and ‘Family carer’ and ‘identification’. In a second step, a search strategy was developed for PubMed, using the preliminary search terms supplemented by additional terms found in the preliminary search such as specific instruments related to family carers in general practice. This strategy will be adapted to each of the other databases with the support of a librarian. shows the preliminary search and the search terms for PubMed. The reference management tool Citavi will be used for database organisation of the search results retrieved. After that, duplicates will be eliminated. Eligibility criteria Studies will be included if they meet the specified criteria presented in . Studies are required (1) to include adult patients in general practices and (2) to use any kind of instrument or format to identify (over)burdened caring relatives. Due to the team’s limited financial and language resources, only articles published in the English, French or German language or with a translation available will be included. This review will include quantitative studies (eg, cohort studies, case–control studies and cross-sectional studies) as well as qualitative (eg, interviews, focus groups, observations, document studies) and mixed-method studies focused on the identification of caring relatives/informal carers. Selection of sources of evidence Two reviewers will screen all abstracts and full-text studies in Rayyan ( https://www.rayyan.ai/ ). The articles will be screened by title and abstract based on the inclusion and exclusion criteria summarised in . Any articles that are deemed relevant by both reviewers will be included in the full-text review, different judgements will be discussed. In the second step, the two investigators will then each independently assess the full-text articles to determine if they meet the inclusion/exclusion criteria shown in . By using this technique, reference lists of existing primary studies will be checked to ensure the relevant literature appearing in such studies is considered in this study. Charting the data To extract relevant information systematically, a data extraction table in Microsoft Word, based on the JBI Review’s Manual, is created. This table  contains general and specific information about the studies fulfilling the eligibility criteria for inclusion. Further refinements may be added to include any relevant data that was not initially included during the extraction process. Data from all included studies will then be charted by the first reviewer (YM) and the extraction checked by the second reviewer. The collected data will form the basis of the analysis. Synthesis of results The research questions will be reported as a narrative summary and separately presented in a tabular form. It will be possible to highlight the practical use of the instruments reviewed and identify barriers limiting or impeding their use in daily practice. With a focus on the identification of caring relatives, we will also show areas that have been under-researched and may require further investigation or improvement. We will present results appropriately in an aggregate and visual form using tables and charts. Patient and public involvement No patient involved. Ethics and dissemination As the scoping review methodology is based on the analysis of literature publicly available, ethical approval is not required. It also does not involve medical research or any type of personal confidential information from participants. Findings of the scoping review will be summarised in a structured tabular form containing details on key results and characteristics. The results of this scoping review will be submitted for publication in an international peer-reviewed journal (preferably open access), scientific meetings and conferences on public health, social medicine and health economics. 

Main objective: What tools are used to assess and identify caregiver burden at an early of caregiving in general practice? Secondary objective: Which factors and characteristics of instruments are associated with a systematic use and successful implementation in general practice as well as barriers limiting the implementation? 

To answer our central research questions, we use an iterative search strategy involving the search for data in four electronic databases (PubMed, LIVIVO, the Cochrane Library, CINAHL) from inception to June and July 2023 and the reference lists of key studies to identify any studies eligible for inclusion The time period was deliberately not narrowed down in order to completely include recent research and to present the state of knowledge as comprehensively as possible. 

A preliminary search was performed in PubMed using database specific Boolean operators based on the inclusion and exclusion criteria summarised in using the terms (and their synonyms) ‘General Practice’ and ‘Family carer’ and ‘identification’. In a second step, a search strategy was developed for PubMed, using the preliminary search terms supplemented by additional terms found in the preliminary search such as specific instruments related to family carers in general practice. This strategy will be adapted to each of the other databases with the support of a librarian. shows the preliminary search and the search terms for PubMed. The reference management tool Citavi will be used for database organisation of the search results retrieved. After that, duplicates will be eliminated. 

Studies will be included if they meet the specified criteria presented in . Studies are required (1) to include adult patients in general practices and (2) to use any kind of instrument or format to identify (over)burdened caring relatives. Due to the team’s limited financial and language resources, only articles published in the English, French or German language or with a translation available will be included. This review will include quantitative studies (eg, cohort studies, case–control studies and cross-sectional studies) as well as qualitative (eg, interviews, focus groups, observations, document studies) and mixed-method studies focused on the identification of caring relatives/informal carers. 

Two reviewers will screen all abstracts and full-text studies in Rayyan ( https://www.rayyan.ai/ ). The articles will be screened by title and abstract based on the inclusion and exclusion criteria summarised in . Any articles that are deemed relevant by both reviewers will be included in the full-text review, different judgements will be discussed. In the second step, the two investigators will then each independently assess the full-text articles to determine if they meet the inclusion/exclusion criteria shown in . By using this technique, reference lists of existing primary studies will be checked to ensure the relevant literature appearing in such studies is considered in this study. 

To extract relevant information systematically, a data extraction table in Microsoft Word, based on the JBI Review’s Manual, is created. This table  contains general and specific information about the studies fulfilling the eligibility criteria for inclusion. Further refinements may be added to include any relevant data that was not initially included during the extraction process. Data from all included studies will then be charted by the first reviewer (YM) and the extraction checked by the second reviewer. The collected data will form the basis of the analysis. 

The research questions will be reported as a narrative summary and separately presented in a tabular form. It will be possible to highlight the practical use of the instruments reviewed and identify barriers limiting or impeding their use in daily practice. With a focus on the identification of caring relatives, we will also show areas that have been under-researched and may require further investigation or improvement. We will present results appropriately in an aggregate and visual form using tables and charts. 

No patient involved. 

As the scoping review methodology is based on the analysis of literature publicly available, ethical approval is not required. It also does not involve medical research or any type of personal confidential information from participants. Findings of the scoping review will be summarised in a structured tabular form containing details on key results and characteristics. The results of this scoping review will be submitted for publication in an international peer-reviewed journal (preferably open access), scientific meetings and conferences on public health, social medicine and health economics. 

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