2.1 Problem Identification

Caring for people who live with MI (consumers)—can cause what is often known as carer burden, which can have negative physical and psychological impacts on carers due to the associated stress. Respite care has the potential to decrease the burdens or fatigue carers experience from caring for consumers with MI (Lund et al. 2014). Respite care refers to any intervention aimed at providing rest or relief to carers (Maayan, Soares-Weiser, and Lee 2014). The study was based upon the research question: What are the experiences of using respite care among carers or relatives who are responsible for caring for individuals with MIs?

2.2 Literature Search (Search Strategy)

The researchers established that studies eligible for inclusion in the review must have reported primary quantitative, qualitative or mixed methods data and have been published in English between January 2005 and May 2023. The initial date of 2005 was chosen as the last substantive literature review was published by Jeon and her colleagues in that year (Jeon, Brodaty, and Chesterson 2005).

This study's inclusion criteria selected studies that reported participants aged 18–65 years who were caring for a person as an adult aged 18 years or over with a primary diagnosis of MI as eligible for inclusion. Studies were excluded if the primary focus was on carers for participants with a physical health condition or disability, children (age <18), carers for people with substance use disorders, elderly people patients with Alzheimer's or ‘cognitive impairment’ or ‘memory loss’ and/or dementia. Finally, the reported focus of the study must have included the experiences of informal carers regarding respite care services.

A systematic search process using electronic databases was conducted to identify studies that were relevant to the research question. This process began with a preliminary search that was carried out to assist in keyword selection and question refinement. An initial review of the articles that emerged in this primary search revealed that using the terms ‘carer’, ‘mental health condition’ and ‘respite care’ proved unhelpful in finding useful articles.

As a different approach, various combinations of these terms were used along with asterisks (‘*’) to expand the search terms, resulting in the broadest selection of research literature (Table 1).

The electronic databases used for the literature search included the Medical Literature Analysis and Retrieval System Online (MEDLINE), the Cumulative Index to Nursing and Allied Health Literature (CINAHL), SCOPUS and PsycINFO (Psychology). MEDLINE and CINAHL they are recognised nursing and health focussed databases. Meanwhile, the American Psychological Association's PsycINFO, which offers an optimal resource for locating psychological literature, was used to identify the impacts of respite care in carers of people with MI. In addition, a search was performed using Google Scholar with the same search terms and fields (Figure 1).

The screening was conducted using Covidence Systematic Review Software. A total of 2239 references were initially included for screening, representing 2239 individual studies. After removing 450 duplicate articles, 1779 studies remained. Each article was reviewed by two authors. These studies underwent evaluation based on their title and abstract, with a primary focus on respite care for mental health.

Specific attention was given to respite care for individuals with mental health conditions. Studies involving children with disabilities, particularly intellectual or developmental disabilities, as well as investigations related to cancer, HIV/AIDS, stroke, neurological disorders such as Parkinson disease and multiple sclerosis, and other terminal illnesses were excluded from the analysis.

Among the 52 studies assessed for full-text eligibility, 45 studies were excluded due to inappropriate study design (n = 27), incorrect intervention (n = 8), incorrect patient population (n = 6), not being primary studies (n = 3) and incorrect indication (n = 1). Ultimately, seven studies met the inclusion criteria and were included in the analysis, focusing solely on respite care for mental health.

The main aim of the analysis was to focus solely on primary research studies to ensure a more direct examination of the original data and findings. This approach allows for a more comprehensive understanding of the specific research topic or questions at hand. Table 2 provides a summary of the articles.

2.3 Data Evaluation

The first author initially screened the studies by title or abstract, and then all research team members discussed the results until a consensus was reached. Next, the authors appraised all of the included papers individually, followed by a group discussion of the appraisal results.

The authors sought to enhance credibility by selecting valid, well-authenticated electronic databases and assessing the representativeness of each study included to ensure that these studies were relevant to the aim of the review. The studies selected for this review came from primary sources. Each of the study authors appraised the quality of evidence independently using the Critical Appraisal Skills Programme (CASP) framework (Critical Appraisal Skills Programme 2018). The CASP comprises a group of critical appraisal tools covering a wide range of research. The CASP provided a comprehensive checklist to assess the quality of methodology for each qualitative study. Using Critical Appraisal Skills Programme (2018) involved focusing on the rigour of the qualitative studies explored, the justification of study aims, sampling and recruitment strategies, data analysis strategies and the discussion in the study report. None of the qualitative studies described in detail the relationship between researchers and participants (Brighton et al. 2016; Gillieatt et al. 2018; Jardim and Pakenham 2010b; Jeon et al. 2006; Jeon, Chenoweth, and McIntosh 2007).

The quantitative studies were appraised using The Joanna Briggs Institute (JBI) checklist for quasi-experimental studies (Barker et al. 2024) and the JBI critical appraisal checklist for analytical cross-sectional studies (The Joanna Briggs Institute 2017). The JBI review process is essentially an analysis of the available literature (i.e., evidence) and a judgement of the effectiveness or otherwise of a practice, involving a series of complex steps. JBI takes a particular view on what counts as evidence and the methods utilised to synthesise those different types of evidence. In line with this broader view of evidence, JBI has developed theories, methodologies and rigorous processes for the critical appraisal and synthesis of these diverse forms of evidence in order to aid in clinical decision-making in healthcare (Tufanaru et al. 2024).

In the Brighton et al. (2016) study, compelling evidence was found to support the favourable impact of respite care on the well-being of caregivers. The use of the CASP tool for critical appraisal affirmed the study's validity, reliability and applicability. The findings hold both statistical and clinical significance, offering valuable insights for policymakers and practitioners in the field of mental health services. Gillieatt et al. (2018) highlight that the benefits of respite services, including enhanced mental health and reduced stress, outweigh any potential drawbacks or costs. This study provides strong evidence to support the positive influence of residential respite services on both caregivers and care recipients. Employing the CASP tool for critical appraisal reaffirms the study's validity, reliability and applicability. The findings carry statistical significance and deliver valuable insights for the development and implementation of similar services in different regions.

The study by Jardim and Pakenham (2010b) provides valuable insight into respite care for adults with MI from the carers' perspective. The study discusses implications for practice, policy and future research, highlighting areas for improvement in respite care services. The study is valuable for informing practice and policy, contributing to the improvement of respite care services and support for carers.

The studies by Jeon et al. (2006) and Jeon, Chenoweth, and McIntosh (2007) offer practical recommendations and significant insights to improve support and respite care services for older carers and families of people with severe MI. The researchers highlight the unique needs of this population and discuss implications for practice, policy and future research, all conducted with methodological rigour and ethical considerations. The findings are well-documented and offer significant insights into the provision and use of respite care services.

As indicated, the JBI checklist was used to assess validity and reliability of the quantitative studies by exploring whether the project addressed a clearly focused issue, the process of recruitment, if the authors identified all of the important confounding factors, the clarity of the study results and the implications of the study findings. The study by Jardim and Pakenham (2009) provides preliminary evidence on the effectiveness of respite care for carers of adults with MI, with significant findings on reduced burden but increased stress post-respite. The study is a valuable pilot investigation highlighting both potential benefits and risks associated with respite care for mental health carers. The use of rigorous methods and validated outcome measures (19-item Burden Assessment scale) enhances the reliability of the findings, although the small sample size and attrition limit the generalisability. Further research is recommended to explore these findings in larger and more diverse populations.

The study by Jardim and Pakenham (2010a) demonstrates clear definitions and detailed descriptions and employs valid and reliable measurements. Furthermore, the study is well-designed and provides valuable insights into the impact of respite care on carers of adults with MI. The use of standardised measurement tools and appropriate statistical methods (Relationship quality, 18-item inventory of caregiving tasks, burden assessment scale, 15-item SRGS, 21-item depression, Anxiety and Stress Scale, DASS-21, satisfaction with life scale) strengthens the validity of the findings. The study meets the necessary criteria for inclusion, providing a strong analysis of the differences between respite care users and non-users among carers of adults with MI. No study was excluded based on this data evaluation (Whittemore and Knafl 2005).

Tables 3–5 illustrate the critical appraisal of articles using CASP for qualitative JBI checklist for quantitative studies.

2.4 Data Analysis

The first author (CI) coded the results to extract the themes which were refined and developed with the research team via observing the emergence of the concepts and finding similarities. At the same time, the research team iteratively developed initial thoughts on key findings (Ingram et al. 2006). In the initial phase of analysis, the CI identified and defined all possible codes. Thereafter, the data was based on respective definitions under each code. Upon completion of the study, the coded data were used to identify similarities and differences. Finally, the researchers grouped similar data under the shared experience's theme.

3.1 Study Selection

Seven articles were included in this review. All were based on research conducted in Australia. Five studies used qualitative methodology, while the remaining two were quantitative. Table 2 summarises the characteristics of the studies included in the article and provides the findings for each individual study.

3.2 Synthesis of Findings

Four overarching themes were identified in terms of informal carers. Each theme incorporated sub-themes linked to emerging key concepts, which enabled the authors to distinguish the essence of meaning (Hewitt-Taylor 2017).

The identified themes are: (a) carers' relief of carer burden; (b) benefits for individuals with MI; (c) barriers to accessing respite care, including a discussion of the lack of suitable respite services, insufficient knowledge and understanding of respite care for carers, respite accessibility challenges accessible for people with MI, the reluctance of people with MI to go into respite care and increasing stress and anxiety for carers; and (d) inappropriate services model for respite care for individuals with MI. This theme incorporated a discussion on the knowledge deficit about MI, inappropriate activities and lack of awareness/ understanding of cultural and diverse needs (Table 6).

3.3 Relief of Carer Burden

This overarching theme focused on the relief of the carer burden described in the primary studies related to informal carers' experiences when using respite care services.

Six out of the seven chosen papers explored the impact of utilising respite services by informal carers through the lens of a respite care relief carer burden (Brighton et al. 2016; Gillieatt et al. 2018; Jardim and Pakenham 2009, 2010a, 2010b; Jeon et al. 2006). According to the study findings, most of the informal carers experienced relief from burden during their use of respite care.

Carer burden has been defined as a ‘multidimensional response to the negative appraisal and perceived stress resulting from taking care of an ill individual’ (Kim et al. 2012, 846). In that light, a solution that relieves or alleviates carer burden could be expected to result in a positive perception of the experience on the part of the carer.

According to the studies analysed, the major impact of the use of respite care was the time it gave informal carers to participate in leisure activities, rest, socialise and cope better with difficulties in the long term, as well as feel more comfortable overall. For example, Jeon et al. (2006) explored the perceptions of older adults who served as family carers for people with MI who needed access to and use of respite services. In the study's semi-structured interviews, seven carers described their positive experiences in using respite care services in terms of having time to themselves.

Jardim and Pakenham (2010b) also identified a decrease in their objective burdens (including financial problems, limitation of personal activity, household disruptions, social disturbance) as a result of having time for themselves. This outcome meant that these carers could cope better with the tasks necessary to continue to care for their relatives.

Similarly, Brighton et al. (2016) examined the impact of enabling people with MI to attend Recovery Camp as a respite service that gave carers several days of relief from their caring responsibilities. All the carers who were interviewed confirmed that they experienced some benefits from this respite. They had time for themselves and spent this time engaging in pursuits such as shopping, going to the hairdresser, having a meal at a restaurant or simply engaging in leisure activities. Some of them also described using the break to look after their physical health, as one carer remembered, stating, ‘I've just had surgery on my spine, so my time was fully spent in resting my back. I have only been allowed to venture out to keep doctors' appointments for quite a while’ (Brighton et al. 2016, 37). In addition, Brighton et al. (2016) report that respite care allowed carers to spend time with each other as a couple, carers thought caring for people with MI had a negative effect on the relationship.

Jardim and Pakenham (2010b) offered similar findings. Their study, which examined 106 carers' perceptions of respite care, found that fewer than half (36%) of the participants had used respite care, while the majority (64%) had never accessed respite care. The study found that the carers who did experience this service used their respite time as an opportunity to relax and engage in activities that gave them pleasure. In short, they simply enjoyed taking a break from their caring role. Moreover, this respite enabled them to cope better when their caring role resumed.

A study by Gillieatt et al. (2018) involved family/carers, people with MI and service providers' experiences of respite service in Western Australia. According to the researchers' findings, six out of eight carers had a positive experience regarding the respite service. Specifically, carers described how they felt relaxed and that this was possible because the respite facility was an asylum (meaning a place of safety). One carer emphasised ‘feeling peace of mind that their loved one was safe’ (Gillieatt et al. 2018, e446). The authors concluded that a safe, calm environment and having staff available to help and support residents at all times can give carers peace of mind.

Similarly, Jardim and Pakenham (2010b) described how some carers felt that a safe environment with non-judgemental staff who are willing to try and engage with consumers is an essential aspect of using respite care.

It can be concluded, therefore, that services that offer respite care provide the necessary security for informal carers to place their family members in care. Furthermore, this peace of mind enables carers to perceive the respite experience positively.

3.4 Benefits for Individuals With MI

The second theme that carers in the selected studies described was the benefits for people with MI. Three out of the seven studies explored the impact of utilising respite services by informal carers through the lens of respite care benefits for individuals with MI (Gillieatt et al. 2018; Jardim and Pakenham 2010b; Jeon et al. 2006).

The first factor that emerged in our analysis was a sense of universality in that opportunities were provided for the people with MI to socialise with people who had a similar condition (Jardim and Pakenham 2010b; Jeon et al. 2006). People with MI were able to enjoy activities such as sports or playing cards or other games and further developed friendships (Jardim and Pakenham 2010b; Jeon et al. 2006). Gillieatt et al. (2018) found that people with MI in their study felt adequately cared for and supported during their respite experience. Jardim and Pakenham (2010b) and Jeon et al. (2006) also found that respite offered time for individuals with MI to practice independence and freedom by having a break from their families. Three studies, Gillieatt et al. (2018), Jardim and Pakenham (2010b) and Jeon et al. (2006), agreed that using respite care services was advantageous for people with MI in some perspectives.

3.5 Barriers to Accessing Respite Care

The third theme in this review was that not all carers' experiences of respite care were helpful. Six out of seven of the analysed papers revealed how respite care affected some carers adversely (Gillieatt et al. 2018; Jardim and Pakenham 2009, 2010a, 2010b; Jeon et al. 2006; Jeon, Chenoweth, and McIntosh 2007).

The carers who participated in the studies under consideration discussed many barriers to accessing respite care that created difficulties for them in terms of their ability to utilise services. A number of subthemes related to barriers emerged during our analysis, including lack of suitable respite services available for people with MI, insufficient knowledge and understanding about respite care services for carers, respite accessibility challenges accessible for people with MI, the reluctance of patients with MI to go into respite care and increased stress and anxiety on the part of carers during respite care.

4.1 Suggestions and Recommendations

4.2 Limitations

The strength of this review is its specific focus on the experience of those who care for individuals living with MI regarding the use of respite care services. All reviewers independently appraised all the studies reviewed.

Limited evidence was found that focused specifically on the experiences of carers for people with MI during their use of respite care. The lack of attention to this population in terms of the study topic in this field impacted the number of articles; moreover, some studies may have been missed. Assistance from a qualified university librarian was sought to mitigate this limitation. The librarian also responded with a small group of returned results. The lack of existing evidence uncovered in this review, therefore, demonstrates a gap in the research.

An interesting result was all of the studies that emerged during the search process were conducted in Australia, which could be argued as a limitation given the homogeneity of the geographical setting.