Abstract
Background: Family members caring for people living with mental illness (PLWMI) are prone to grapple with caregiver burden. The caregivers often contend with a decline in their mental and physical well-being while executing their role. This exploration aimed to understand the needs of family caregivers of PLWMI.
Aim: An integrative review was conducted to analyse the existing literature on the needs of family caregivers for PLWMI.
Method: The review adhered to the instructions provided by Toronto and Remington, drawing upon the guidance of Whittemore and Knafl. The search used four electronic databases: PubMed, African journals, EBSCOhost and Scopus. After screening 3253 references, 18 studies (10 qualitative, 4 quantitative and 4 mixed methods) were included.
Results: The review identified various needs of PLWMI caregivers, including the need for support (financial, social, peer and psychological), psychoeducation, community acceptance of family caregivers, and comprehensive family caregiver health assessments.
Conclusion: This review recognises the significance of addressing the needs of the caregivers of PLWMI to alleviate the impact of caregiver role strain. Promoting nursing care that recognises the importance of caregiver-oriented practice in healthcare is essential. This can help address the needs of the caregivers, enhance their ability to cope with caregiver role strain and promote a better quality of life.
Contribution: This review may inform policymakers to ensure the need for mental health practice to demonstrate knowledge in caring for caregivers of PLWMI. Furthermore, there is a need to integrate the management of PLWMI with that of the caregivers.
Keywords: caregivers; family; mental illness; needs; support.
Introduction
The focus of treating people living with mental illnesses (PLWMI) has shifted from hospitals to their homes over the previous 20 years because of the deinstitutionalisation of mental health services (Addo et al. 2018:2). The deinstitutionalisation of psychiatric patients played a vital role in reducing overcrowding and respecting patients’ autonomy (Silva et al. 2022:102). However, the shift occurred alongside various factors, including the advancement of effective community treatment options like assertive community treatment, the establishment of national programmes that finance housing and community treatment for PLWMI, the impact of the civil rights movements and the significant expenses associated with institutionalising those with mental health conditions (Lamb & Weinberger 2020:175). To this end, most caregiving responsibilities have shifted onto family caregivers rather than mental health professionals.
As a result, families often feel responsible for their loved one’s mental health challenges and feel the need to care for their family members diagnosed with mental illness (Ong, Fernandez & Lim 2021:213). Relational, social and emotional connectedness of family members towards their relatives and a sense of family obligation is the foundation of their nurturing attitude towards caregiving (Sharma, Chakrabarti & Grover 2016:10). Families are driven by a sense of affection, responsibility and commitment to care for their relatives diagnosed with mental illness. However, caring for their loved ones can have many challenges. One of the primary challenges that caregivers face involves the adjustments they must make in their lives to meet the needs of mentally ill family members, particularly those dealing with moderate-to-severe mental illness. The challenges may include halting daily life projects and compromised leisure time (Andrade et al. 2021:2). Another challenge endured by caregivers of people diagnosed with mental illness is courtesy stigma, which literature also refers to as stigma by association (Siddiqui & Khalid 2019:1330). The courtesy stigma of mental illness is the stigma faced by families of PLWMI because of their association with a family member who has a mental illness (Gaolaolwe, Manyedi & Serapelwane 2023:1; Siddiqui & Khalid 2019:1330). The effects of courtesy stigma are reported to be devastating to the families of PLWMI and include feelings of shame, remorse, self-blame, etc. (Azman, Jamir Singh & Sulaiman 2019:462). Therefore, based on empirical evidence, it can be concluded that families of PLWMI experience caregiver burden (Ayalew et al. 2019:1; Hsiao, Lu & Tsai 2020:2746).
In the 1940s, Treudley first used the term ‘caregiver burden’ to describe the negative impact of caring for a chronically sick patient on family dynamics, the caregiver’s health and their quality of life (Chadda 2014:222; The Specialist Forum 2020:12). The causes of caregiver burden include inadequate financial resources, conflicting responsibilities and limited social activities (Liu, Heffernan & Tan 2020:443). Financial and economic constraints are significant factors linked to caregiver burden (Liu et al. 2020:443). Although literature is unequivocal about the causes of caregiver role burden, it remains a dynamic phenomenon, with its intensity influenced by factors such as age, gender, coping strategies, caregiving duration and the cultural values of the caregiver (Chiao, Wu & Hsiao 2015:349). Furthermore, some studies have indicated that social factors such as courtesy stigma can exacerbate caregiver role burden (Kahn et al. 2016:4; Werner et al. 2012:94). While past research has investigated family caregiver burden with their specific needs and coping, the results are frequently inconclusive or contradictory, indicating a lack of a reliable set of practical indicators. This scenario underscores the importance of this integrative literature review (ILR) in providing a more nuanced understanding of the needs of family caregivers caring for PLWMI and uncovering additional influencing factors and trends.
The caregiver burden endured by these families is revealed through the existence of mild emotional and psychosocial difficulties, unfavourable life consequences or major life adjustments that impact the caregivers (The Specialist Forum 2020:12). The World Federation of Mental Health (WFMH) data, as reported by The Specialist Forum (2020:12), show that 80% of women who care for PLWMI also have multiple family and work responsibilities. Women in these roles often experience anxiety and depression from caregiving demands. This raises concerns about family caregivers managing stress associated with their responsibilities. Furthermore, research on the needs of these caregivers is limited, which this study aims to address (Ndlovu & Mokwena 2023:2; Stanley, Balakrishnan & Ilangovan 2017:135). Specifically, studies focused on family caregivers of those with mental illness in Botswana are few. The study results could enhance nursing practices by supporting initiatives to meet caregivers’ needs, helping them cope with caregiving pressures. Recognising the specific needs of family caregivers is essential not only for their own well-being but also for the overall effectiveness of mental healthcare. Addressing these needs can foster healthier caregiving settings that enhance the quality of life for caregivers and those they support. Therefore, this study seeks to synthesise the current literature on the needs of family caregivers assisting individuals with mental illness.
Methods
This ILR adhered to the procedure for conducting an ILR as specified by Toronto and Remington (2020:5), originally adapted from the guidelines by Whittemore and Knafl (2005:548). Whittemore and Knalf (2005:546) define an ILR as a review technique that consolidates existing empirical and theoretical insights to provide a thorough understanding of the subject being investigated. Additionally, the ILR facilitates the incorporation of various methodologies (Toronto & Remington 2020:4). Compared to other review types, such as systematic reviews, the ILR was the most suitable choice for this study. It allowed the researchers to summarise various types of evidence using different methodologies, offering a more comprehensive and inclusive perspective on the needs of family caregivers caring for individuals living with mental illness.
The ILR followed the six-step method outlined by Toronto and Remington (2020), which comprises: (1) formulating the review question, (2) searching and selecting relevant literature, (3) appraising quality, (4) analysing and synthesising data, (5) discussing and concluding and (6) disseminating findings. Conducting the ILR was aimed at synthesising various types of data sources (Papaioannou, Sutton & Booth 2016) about the needs of family members caring for PLWMI. According to Toronto and Remington (2020:5), an ILR synthesises research and extrapolates information from various sources on the subject matter, which facilitates the reviewer’s aptitude to understand a particular phenomenon comprehensively. An ILR best served the purpose of the review because our review necessitated extensive research evidence on the needs of family caregivers of PLWMI. An all-inclusive approach to the literature search was conducted to ascertain a maximum number of eligible primary sources (Whittemore & Knafl 2005:548). To achieve this, the authors started their search on bibliographic databases, then conducted a focused grey literature search and lastly searched reference lists of the primary sources included in the review. The following six steps of the ILR were used in this study as suggested by Toronto and Remington (2020).
 |
FIGURE 1: The six steps of the integrative literature review process. |
|
Formulate review question (problem identification)
The authors started the ILR by identifying a problem, which forms the basis for the ILR (Toronto & Remington 2020:6). The review question for this study was, ‘What is the existing evidence on the needs of family members caring for people living with mental illness?’
Literature search
Clearly defined literature search approaches are vital as they augment the rigour of any review because biased and incomplete searches led to insufficient databases and a possibility of imprecise findings (Whittemore & Knafl 2005:548). The reviewers systematically approached the literature search. The search took place between September 2023 and December 2023. Moreover, the search was comprehensive, using various electronic databases, ancestry and manual scanning methods through peer-reviewed journals. The bibliographic databases searched are PubMed, African journals, EBSCOhost and Scopus. The search terms were applied across the databases using advanced search options, and MeSH terms were combined using Boolean operators AND and OR. The reviewers derived key search terms from main search terms, which included ‘needs’, OR ‘challenges’, OR ‘experiences’, AND ‘caregivers’, OR ‘family member’, OR ‘families’, AND ‘caring’, AND ‘people’, OR ‘patients’, AND ‘mental illness’. In addition, grey literature was identified using a truncated and structured search strategy from relevant websites of organisations that care for family caregivers such as the Agency for Integrated Care, websites on Google search such as Emerald and databases of peer-reviewed and grey literature (e.g. Google Scholar). Moreover, in this literature search, the reviewers consulted the university librarian concerning the search strategy, the databases and the selection of keywords. The use of a reference librarian benefited the ILR as it augmented the general quality of the search and minimised the risk of bias by enabling a comprehensive and reproducible search procedure (Lawless & Foster 2020:22).
Inclusion and exclusion criteria
In this ILR, the research articles that were considered for the review included studies published between 2013 and 2023. A decade-long timeframe offers a contemporary perspective on the research landscape within the selected field. Since research develops swiftly, concentrating on this period allows authors to highlight the latest advancements, trends and emerging themes. Previous literature may be obsolete or have been replaced by newer discoveries. The ILR comprised articles from peer-reviewed journals focusing on the needs of family caregivers of PLWMI, published in English. Including literature published in languages other than English can be time consuming and costly because identifying and translating or extracting data from non-English publications can upsurge the time and cost to complete the review (Kugley et al. 2016:32; Rasmussen & Montgomery 2018:2). The study excluded articles and chapters in books that are more than 10 years old and articles from any form of literature review. Incorporating literature review articles can create a dependency on secondary interpretations, potentially diminishing the review’s depth and original analysis. Integrative literature reviews focus on synthesising original research findings instead of analysing prior reviews.
Data abstraction and synthesis
The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) approach was utilised to review and report article selection (Page et al. 2021:2). The first and last authors independently screened the titles and abstracts of articles against the inclusion criteria. They then advanced eligible publications to the next stage, where abstracts were thoroughly examined. Ultimately, the eligible publications were read in full, and the qualified articles from this set were chosen for the final stage. Any disputes regarding the included articles were resolved through discussion and collegial decision-making before proceeding with the next steps of this integrative review.
Screening and selection
An in-depth appraisal of the documents was conducted by the authors to critically assess the quality or the validity of the selected articles to determine whether the results are worthy of being included in the study data (Smith et al. 2011:3; Toronto & Remington 2020:7). A critical evaluation of the selected documents was conducted using the Mixed Methods Appraisal Tool (MMAT) (Table 1). The set of questions in the MMAT, covering the qualitative, quantitative and mixed method study designs, makes it suitable for an ILR. The tool is user friendly, thorough, efficient and concise. It features predefined items that facilitate the systematic and transparent examination of key methodological aspects, applying a consistent approach across all included studies (Hong et al. 2018a:464). The first author evaluated all included documents, whereas the second author randomly chose and assessed a selection of them. The articles were assessed according to the MMAT quality criteria, assigning values of yes = 1, no = 0 and cannot tell = 0, while the last value is the aggregate.
| TABLE 1: Mixed Methods Appraisal Tool version 2018. |
Data extraction and analysis
The data analysis for this review followed the integrative review framework established by Whittemore and Knafl (2005:548–551). During the critical analysis of the data, the key concepts and viewpoints in the current literature were prudently examined through a critical lens. The first and second authors independently analysed the selected articles using content analysis, whereby words in the text were classified (Grove, Burns & Gray 2021). While coding and integrating data, the researchers identified recurring themes that responded to the review question from both the qualitative and quantitative data. Key findings that correlate to the research aim were highlighted in the article, summarised and listed. The lists of the key findings were grouped according to themes and subthemes. The authors agreed on the themes and subthemes to describe the needs of the family caregivers of PLWMI. The reviewers used insights from a critical and careful analysis of the extant literature to generate new perspectives on the needs and support needed by the family caregivers of PLWMI. Data were extracted into tables and examined for comparisons concerning the review question. Table 2 included authors, year of publication, country, design, population and sampling, purpose and quality appraisal.
| TABLE 2: Summary of studies included in the review. |
Ethical considerations
Ethical clearance to conduct this study was obtained from the North-West University Health Research Ethics Committee (NWU-HREC) on 04 May 2024 (ethic no.: NWU 0017823A1).
Review findings
Study characteristics
The 18 studies included in the ILR covered 2013–2023. The screening process of the ILR is summarised in Figure 2. The focus of the articles is on the caregivers of PLWMI. Of the 18 studies, 55.6% (n = 10) used a qualitative design, 22.2% (n = 4) used a quantitative research design and 22.2% (n = 4) used a mixed methods design. Moreover, the studies included in this review were conducted in lower-income countries (11.1%; n = 2), lower-middle-income countries (27.8%; n = 5), upper-middle-income countries (27.8%; n = 5) and high-income countries (33.3%; n = 6). An integrated summary of the characteristics of the studies included in the ILR is presented in Table 2.
 |
FIGURE 2: Flow diagram showing the inclusion and exclusion process of the integrative literature review. |
|
Results and synthesis of the findings
The research studies used various assessment approaches to validate the collected data. The studies depended on face-to-face interviews, structured questionnaires and interviews, semi-structured interviews, in-depth interviews, focus group discussions and unstructured interviews. The aforementioned approaches were used to collect data on the caregivers of PLWMI’s experiences and needs in caring for their loved ones.
Appraisal of the studies included in this ILR yielded four themes and subthemes related to the needs of family caregivers of PLWMI, which were discussed below: (1) need for support (subthemes – social needs and support, psychological needs and support, physical needs and support, financial needs and support and need for peer support); (2) need to be accepted; (3) need for psychoeducation and (4) need for assessment (see Table 3).
| TABLE 3: Summary of themes and subthemes relating to the needs of family caregivers. |
Theme 1: Need for support
It is impossible to overstate the importance of support networks in preventing the negative impacts such as economic difficulties, physical and emotional strain on PLWMI family care (Addo et al. 2018:2; Molepo & Mfidi 2020:9). Support is essential for helping caregivers of PLWMI manage the stress of their care responsibilities, as indicated by four studies (Amini, Jalali & Jalali 2023:7; Broady & Stone 2015:328; O’Neill et al. 2022:2037). Amini et al. (2023:5) state that a critical component of the sustainability of PLWMI caregivers is the availability or lack of assistance. In a study by Broady and Stone (2015:328), family caregivers for mental health issues reported that they needed help. Considering the relatively low ratings of their physical and mental well-being, the caregivers in the previously stated survey emphasised how urgently they needed access to support services. In a different study by O’Neill et al. (2022:2037), caregivers emphasised the need for assistance and respite to help them deal with the stress of caring. This can be demonstrated by asking for help and taking time off from caring responsibilities.
Subtheme 1.1: Social needs and support
In a study by Amini et al. (2023:1-8), the concept of support and society comprehension was demonstrated using interview analyses. The caregivers of PLWMI frequently identified the main challenges in the caregiving journey as issues related to social support, including welfare, health programmes and social contacts. The results of a study by Anokye (2018:335) showed that the social requirements of family caregivers and their relatives diagnosed with mental illness are not substantially different because of the cultural stigma associated with mental illness and the social obstacles that emerge from it. In the previously mentioned study, caregivers identified social demands, including the need for social affection. This encompasses the importance of promoting and supporting interactions within their broader social network, allowing society to embrace and express love towards them and facilitating easier participation in social activities. Arkorful et al. (2020:14) found that participants desire social connectivity. This refers to caregivers’ perceptions of their relationships with others, both within and outside the caregiving setting. It encompasses the quantity and quality of their social interactions, their sense of belonging and the support they obtain from their social networks. According to the caregivers, the stress of caregiving tasks interfered with their social lives and commitments, making it difficult for them to fulfil their social duties (Anokye 2018:335; Arkorful et al. 2020:14; Mark 2013:41). Caregivers report that having social support is essential when caring for a relative who is dealing with a persistent mental illness (Shamsaei et al. 2015:5). They claim that because other family members are unaware of the stress they are under while taking care of their loved ones, they receive less help.
Subtheme 1.2: Psychological needs and support
Five studies reported the family caregivers’ psychological needs and the support they need to cope with the strain of caregiving (Anokye 2018:336; Arkorful et al. 2020:13; Marimbe et al. 2016:5; Moudatsou et al. 2021:10; Phoeun et al. 2023: 444).
Results from research involving family caregivers of PLWMI show that the participants’ main urgent psychological need was a good attitude towards their relatives diagnosed with mental illness, leading to a better state of mind (Anokye 2018:336; Arkorful et al. 2020:13; Marimbe et al. 2016:5). The participants also stated that they needed love and affection as well as counselling to help them achieve a stable mental state so they could fulfil their role as caregivers. According to the aforementioned studies, family caregivers report experiencing psychological difficulties such as stress, worry and depression because of the strain and complications involved in providing care for their relatives diagnosed with mental illness. It can thus be concluded that unmet psychological needs amplify caregiver burden. Inadequate means to express feelings can overwhelm caregivers because of stress and other psychological demands.
According to Moudatsou et al. (2021:10), participants reported the need for psychological support as a priority for the family caregivers of PLWMI because of the difficulties in coping and adapting because of issues relating to mental illness, social stigma and patient behaviour. The above findings are supported by a study conducted by Phoeun et al. (2023:444), which highlights psycho-therapeutic support as one of the priority interventions needed by family members caring for PLWMI.
Subtheme 1.3: Physical needs and support
According to the body of research, family caregivers of PLWMI have reported dealing with a variety of physically excruciating difficulties while providing care, placing them in a position of equal vulnerability with their patients (Anokye 2018:335; Arkorful et al. 2020:9; Shamsaei et al. 2015:5). The caregivers encounter numerous physical challenges, such as trouble sleeping, severe headaches, fatigue and chest pains. Research investigating caregivers’ support and assistance requirements revealed various physical health challenges. They expressed the need for additional caregiving support to help them plan for adequate sleep and access medical care (Anokye 2018:335; Arkorful et al. 2020:9). Some participants also emphasised the importance of providing accommodations for their patients after they are discharged from the hospital. Adding exercise programmes to support family caregivers, as suggested by Zacharis et al. (2020:853), is crucial. Studies demonstrate the significance of physical activity and exercise for family caregivers’ mental and physical well-being.
Subtheme 1.4: Financial needs and support
According to published research, one of the main obstacles facing the majority of family members who look after their PLWMI is financial constraints (Shamsaei et al. 2015:5). According to the author, several caregivers relied on charity and loans from friends and family to get by. This was corroborated by a study by Nair et al. (2018:40) in which the family caregivers stated that they required financial support. To assist their families and achieve financial independence, they wanted to participate in any self-help groups focused on microfinance. In other research, family caregivers asked for financial support from the government or well-wishers, indicating that having or not having financial support was essential to the family caregivers’ ability to continue their work (Amini et al. 2023:8; Marimbe et al. 2016:5).
Subtheme 1.5: Need for peer support
Three studies described the need for peer support to deal with the strain of caregiving as one of the key necessities for the family caregivers of PLWMI (De Jesus & Maurice 2020:14; Iseselo et al. 2016:9; Marimbe et al. 2016:5). In a study conducted by De Jesus and Maurice (2020:14), most family caregivers conveyed the significance of networks to enable them to share about their burden in caregiving and learn about mental health issues. Social support groups can take various forms and aim to foster social interaction for caregivers and their loved ones facing mental illness, ultimately enhancing their quality of life (Iseselo et al. 2016:9).
Theme 2: Need to be accepted or not to be judged
Concern about being accepted is one of the central issues for families caring for their loved ones with chronic mental illnesses (Amini et al. 2023:5). The participants in the aforementioned study indicated the need for acceptance, empathy and attention, which can enhance their endurance in their caregiving role. Other studies revealed the need for social affection by the family, which they described as the need to be shown love and acceptance by society (Anokye 2018:332; Arkorful et al. 2020:16). The participants expressed that their predicament, which emanates from social stigma associated with mental illness, puts them in dire need for more social attention.
Theme 3: Need for psychoeducation
Eight studies reported the need for education to family caregivers of PLWMI. The family caregivers expressed their need for education and awareness about mental illness (De Jesus & Maurice 2020:12; Kumar & Das 2017:6; Vukeya et al. 2022:7). The caregivers expressed the need for information on the diagnosis, management and prognosis of the patient’s mental condition (Shamsaei et al. 2015:5). They reported the need for education on practical aspects of care and guidance on how to relief the strain of caregiving, which can benefit both the caregiver and their relative diagnosed with mental illness (Molepo & Mfidi 2020:9; Moudatsou et al. 2021:10). According to Iseselo et al. (2016:8), caregivers indicated their interest in acquiring more insight into the genesis of mental illness, which can avert stigma and discrimination and its associated stress. In a study conducted by Marimbe et al. (2016:5), the caregivers reported deficient knowledge about their relatives’ mental conditions and requested to be trained to deal with caregiving psychological effects.
Theme 4: Need for assessment
Literature indicates that health assessment of the family care providers should be of primary concern to mental health professionals (Phoeun et al. 2023:443). Studies recommend that family care providers’ needs assessment should be conducted as they accompany their relatives for treatment at health facilities (Phoeun et al. 2023:443; Silaule et al. 2023:9). The caregivers of PLWMI should be conducted to evaluate various aspects of the caregiver’s life, including their subjective burdens and coping needs (De Jesus & Maurice 2020:20; Vukeya et al. 2022:7). According to De Jesus and Maurice (2020:20), findings from the caregivers’ assessments would further assist the health professionals in identifying the strategies and interventions that can be employed to assist the caregivers meet their needs. Assessment of caregivers can aid in identifying caregiver-specific needs, thus enabling targeted interventions to alleviate caregiver burden.
Discussion
While the family unit continues to be the foundation and strength of PLWMI, family caregivers encounter several challenges as their care transition. To effectively prevent the detrimental impacts on family members who are caring for PLWMI, support networks and services are required (Amini et al. 2023:8; O’Neill et al. 2022:2033). Supporting PLWMI is critical to avoiding caregiver burnout and enhancing their quality of life and overall well-being (Von Kardorff et al. 2015:6).
Availability of support or lack thereof is a critical factor in determining the sustainability of family caregivers, as support enhances the caregivers’ quality of life (Amini et al. 2023:8; Vukeya et al. 2022:7). Access to extra help and support groups is frequently linked to the capacity to manage the stress of providing care (Sharif et al. 2020:9). According to Ntsayagae, Myburgh and Poggenpoel (2019:4), social support is thought to be protective against the psychological challenges faced by family caregivers of PLWMI. Therefore, it is essential to develop support programmes and policies that address the well-being of family members caring for PLWMI.
The findings of our research reveal a significant lack of adequate support for families of PLWMI in Africa. This shortfall stems from many African countries’ economic challenges, raising considerable concern for the PLWMI caregivers’ well-being (Opondo et al. 2020:2; Verity et al. 2021:7). Thus, as postulated by Hsiao et al. (2020:2746), these families bear the burden of caregiving with inadequate support. Contrary to the foregoing, developed nations such as Western countries have made significant strides in supporting PLWMI. In these countries, the much-needed support for caregivers of PLWMI is provided through respite care, halfway homes and community-based centres, which are used to take care of PLWMI and relieve their families from the caregiving burden (Bïlïr 2018:565). Moreover, families of PLWMI require financial, social, psychological and spiritual support that would provide them with enough resources to care for their loved ones (O’Neill et al. 2022:2033). Health workers should promote support for the families of PLWMI. This may include inter-alia, advocating for the establishment of respite care centres and provision of both financial and psychosocial support to ease the caregiving burden. Family caregivers frequently experience overwhelming challenges because of their patients’ diagnoses. Collaborating with mental health professionals, support groups, psychotherapy and group therapy for caregivers facing similar situations can help address this issue. Financial aid is crucial in alleviating the economic pressures related to treatments, including regular check-ups and other therapeutic activities that place substantial financial strain on caregivers. Consequently, providing external financial resources is vital to ease their burdens.
One of the primary concerns in family care of PLWMI is the fear of not being accepted. Family caregivers of PLWMI feel neglected and ostracised (Gaolaolwe et al. 2023:5). Families frequently endure unwarranted stigmatisation from society, often being categorised as relatives of individuals with mental illness simply for providing care to these patients. This detrimental labelling, along with stereotypes and discrimination, not only damages their reputation but also exacerbates the already substantial burdens faced by caregivers. It is imperative that society actively challenges these biased perceptions and offers support to these families, thereby recognising their essential role in the welfare of those they care for. Thus, mental health professionals, like social workers, psychiatric nurses, etc., should promote acceptance for families of individuals with mental illness. Freeing caregivers from courtesy stigma is vital for coping with the challenges of care, achievable through public health education and awareness campaigns (Gaolaolwe et al. 2023:5). The community’s acceptance of caregivers can enable them to form stronger social networks where they can exchange information and support related to mental health (De Jesus & Maurice 2020:11).
In addition, guidelines and policies on caregiving should emphasise the importance of providing care information to families of PLWMI (Moudatsou et al. 2021:10). Caregivers must learn about their relative’s mental health diagnosis and its management for improved care (Chadda 2014:225; Shamsaei et al. 2015:5). Research underscores the importance of health professionals dedicating time to caregivers to comprehend their struggles and create educational approaches addressing the psychological challenges they encounter during their caregiving experience (De Jesus & Maurice 2020:12; Gaolaolwe et al. 2023:5; Marimbe et al. 2016:5; Von Kardorff et al. 2015:6; Vukeya et al. 2022:7).
Mental health professionals must conduct timely assessments for families of PLWMI to promptly identify those facing caregiver burden. The results of these assessments can help health workers create suitable interventions and support tailored to these families, enabling them to manage the challenges of caregiving (Chadda 2014:225; Phoeun et al. 2023:443). Assessing family caregivers helps identify their strengths and weaknesses, guiding effective interventions and support (Foster et al. 2016:147). Therefore, it is essential that caregivers accompanying their relatives diagnosed with mental illness for consultations also have their well-being assessed. Moreover, caregivers’ assessments can be carried out through home visits by mental health professionals (Vukeya et al. 2022:7).
Implications and recommendations
This ILR has implications for mental healthcare providers. The review sheds light on the needs of family caregivers of PLWMI. It highlights the significance of support – financial, social, physical and psychological – as well as psychoeducation and assessments that mental health and welfare personnel should recognise. The review also emphasises the importance of understanding caregivers’ perspectives and experiences, calling for more in-depth exploration using comprehensive study designs. Healthcare providers need to take note of the findings and intensify public education to raise awareness of mental health issues for the caregivers of PLWMI to feel free to socialise without fear of being discriminated against. Furthermore, it is essential to integrate the management of family caregivers with that of their loved ones. Mental health practice should demonstrate knowledge in caring for caregivers of PLWMI to help them cope with the burden of caregiving, which can be achieved through addressing their needs. Additionally, there should be continuous education and training for family caregivers to enhance continuity of care for PLWMI at home across their lifespan. This necessitates policymakers to create legislation mandating the support of caregivers of PLWMI, including the development of guidelines to assist family caregivers.
Limitations
This integrative review used a structured outline to effectively summarise research results from various study designs, providing valuable insights into the needs of PLWMI caregivers. The review authors acknowledge limitations, such as potential language bias in excluding non-English studies and possibly selecting biased studies. Additionally, the review excluded grey literature, articles older than 10 years, books and chapters in books, which might lead to authors missing valuable rich data that can enrich the ILR. The review also identifies limitations such as a lack of literature on the needs of family caregivers of PLWMI. Most studies included in this review focused on the challenges and experiences of family caregivers, with only two studies specifically exploring their needs. The review also acknowledges a deficiency in data saturation, with most findings being based on just a few studies. It highlights the need for further investigation into areas such as the impact of cultural beliefs on caregivers’ needs. Therefore, further studies are needed to explore the needs of families of PLWMI in their specific contexts.
Conclusion
This review explored the needs of family caregivers of PLWMI. The review sums up a comprehensive indication of the needs of caregivers of PLWMI emanating from caregiver role strain and how addressing the needs can assist them cope with the strain of caring. The review outlines the thematic findings on the needs of family caregivers of PLWMI, which includes the need for support (financial, social, physical peer and psychological support), the need to be accepted, the need for psychoeducation and the need for assessment. The review discovered that caregiver burden is a significant issue in the caregivers of PLWMI and needs to be managed through addressing the family caregivers’ needs. It is imperative that mental health nurses identify the needs of the family caregivers in caring for PLWMI and address them to help them cope and improve their quality of life. Alleviating caregiver role strain should be the central focus. A caregiver-oriented care practice could be employed to target caregiver role strain and address the caregivers’ needs. In light of this study’s findings, the researchers recommend developing caregiver support policies and guidelines to guide policymakers on the support they should provide to address the needs of families of PLWMI.
Acknowledgements
The authors would like to appreciate the contribution of the university librarian in assisting with the systematic literature guidance and search throughout all stages of the integrative review. This article is partially based on the author’s thesis entitled ‘Guidelines to support family members caring for people living with mental illness in Lobatse, Botswana’ towards the degree of Doctor of Philosophy in Health Sciences with Nursing Science in the Faculty of Health Sciences, North-West University, South Africa on 27 November 2024, with supervisor(s) Dr G. P. Kovane, Prof M.M. Moagi, Dr P. C. Chukwuere, Dr. R. Machailo.
Competing interests
The authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article.
Authors’ contributions
K.S. conceptualised and conducted the study in fulfilment of the requirements for the degree, Doctor of Philosophy in Nursing. G.P.K, P.C.C, M.M. and R.M. supervised the study to its completion. Lastly, all the authors authorised the final version of the manuscript to be published.
Funding information
The authors did not receive any financial support for the authorship, research and/or publication of this article.
Data availability
The data supporting the conclusions of this article are included within the article. Any inquiries regarding these data may be directed to the corresponding author K.S.
Disclaimer
The views and opinions expressed in this article are those of the authors and are the product of professional research. It does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. The authors are responsible for this article’s results, findings and content.
References
Addo, R., Agyemang, S.A., Tozan, Y. & Nonvignon, J., 2018, ‘Economic burden of caregiving for persons with severe mental illness in sub-Saharan Africa: A systematic review’, PLoS One 13(8), 1–12. https://doi.org/10.1371/journal.pone.0199830
Amini, S., Jalali, A. & Jalali, R., 2023, ‘Perceived social support and family members of patients with mental disorders: A mixed method study’, Frontiers in Public Health 11(1), 1–10. https://doi.org/10.3389/fpubh.2023.1093282
Andrade, J.J.D.C., Silva, A.C.O., Frazão, I.D.S., Perrelli, J.G.A., Silva, T.T.D.M. & Cavalcanti, A.M.T.S., 2021, ‘Family functionality and burden of family caregivers of users with mental disorders’, Revista Brasileira de Enfermagem 74(5), 1–9. https://doi.org/10.1590/0034-7167-2020-1061
Anokye, R., 2018, ‘The needs of family caregivers of people living with mental illness: A social workers’ assessment’, Practice 30(5), 323–339. https://doi.org/10.1080/09503153.2018.1436702
Arkorful, V.E., Mohamed, A.A., Jama, O., Pokuaah, S., Basiru, I., Hammond, A. et al., 2020, ‘Caregivers of mentally ill patients: A cross-sectional need-based assessment of social workers in post-conflict Somalia’, Practice 32(1), 21–41. https://doi.org/10.1080/09503153.2019.1620200
Ayalew, M., Workicho, A., Tesfaye, E., Hailesilasie, H. & Abera, M., 2019, ‘Burden among caregivers of people with mental illness at Jimma University Medical Center, Southwest Ethiopia: A cross-sectional study’, Annals of General Psychiatry 18, 1–11. https://doi.org/10.1186/s12991-019-0233-7
Azman, A., Jamir Singh, P.S. & Sulaiman, J., 2019, ‘The mentally ill and their impact on family caregivers: A qualitative case study’, International Social Work 62(1), 461–471. https://doi.org/10.3109/09638237.2015.1124395
Bïlïr, M.K., 2018, ‘Deinstitutionalisation in mental health policy: From institutional-based to community-based mental healthcare services’, Hacettepe Sağlık İdaresi Dergisi 21(3), 563–576.
Broady, T.R. & Stone, K., 2015, ‘“How can I take a break?” Coping strategies and support needs of mental health caregivers’, Social Work in Mental Health 13(4), 318–335. https://doi.org/10.1080/15332985.2014.955941
Chadda, R.K., 2014, ‘Caring for the family caregivers of persons with mental illness’, Indian Journal of Psychiatry 2014(56), 221–227. https://doi.org/10.4103/0019-5545.140616
Chiao, C.Y., Wu, H.S. & Hsiao, C.Y., 2015, ‘Caregiver burden for informal caregivers of patients with dementia: A systematic review’, International Nursing Review 62(3), 340–350. https://doi.org/10.1111/inr.12194
De Jesus, N.S. & Maurice, A., 2020, ‘Exploring mental health caregivers’ caregiving experiences in France’, The Journal of Mental Health Training, Education and Practice 15(4), 207–221. https://doi.org/10.1108/JMHTEP-06-2019-0031
Foster, K., Maybery, D., Reupert, A., Gladstone, B., Grant, A., Ruud, T. et al., 2016, ‘Family-focused practice in mental health care: An integrative review’, Child & Youth Services 37(2), 129–155. https://doi.org/10.1080/0145935X.2016.1104048
Gaolaolwe, W., Manyedi, E. & Serapelwane, M., 2023, ‘Family members’ experiences of courtesy stigma associated with mental illness’, Health SA Gesondheid 28(1), 1–14. https://doi.org/10.4102/hsag.v28i0.2184
Grove, S.K., Burns, N. & Gray, J., 2021, The practice of nursing research: Appraisal, synthesis and generation of evidence, Elsevier Health Sciences, St. Louis.
Hong, Q.N., Gonzalez-Reyes, A. & Pluye, P., 2018a, ‘Improving the usefulness of a tool for appraising the quality of qualitative, quantitative and mixed methods studies, the Mixed Methods Appraisal Tool (MMAT)’, Journal of Evaluation in Clinical Practice 24(3), 459–467. https://doi.org/10.1111/jep.12884
Hong, Q.N., Pluye, P., Fàbregues, S., Bartlett, G., Boardman, F., Cargo, M. et al., 2018b, ‘Mixed methods appraisal tool (MMAT), version 2018’, Registration of copyright, 1148552(10).
Hsiao, C.Y., Lu, H.L. & Tsai, Y.F., 2020, ‘Caregiver burden and health-related quality of life among primary family caregivers of individuals with schizophrenia: A cross-sectional study’, Quality of Life Research 29(10), 2745–2757. https://doi.org/10.1007/s11136-020-02518-1
Hwang, J.J., Donnelly, T.T., Raffin Bouchal, S. & Davidson, S., 2023, ‘Factors influencing access to nonpharmacological interventions for community-dwelling seniors with mild-to-moderate dementia: An integrative review’, Journal of Psychiatric and Mental Health Nursing 30(6), 1054–1081.
Iseselo, M.K., Kajula, L. & Yahya-Malima, K.I., 2016, ‘The psychosocial problems of families caring for relatives with mental illnesses and their coping strategies: A qualitative urban based study in Dar es Salaam, Tanzania’, BMC Psychiatry 16(1), 1–12. https://doi.org/10.1186/s12888-016-0857-y
Kahn, P.V., Wishart, H.A., Randolph, J.S. & Santulli, R.B., 2016, ‘Caregiver stigma and burden in memory disorders: An evaluation of the effects of caregiver type and gender’, Current Gerontology and Geriatrics Research 2016(1), 1–5. https://doi.org/10.1155/2016/8316045
Kugley, S., Wade, A., Thomas, J., Mahood, Q., Jørgensen, A.M.K., Hammerstrøm, K. & Sathe, N., 2016, ‘Searching for studies: A guide to information retrieval for Campbell’, Campbell Systematic Reviews 13(1), 1–73. https://doi.org/10.4073/cmg.2016.1
Kumar, R. & Das, A., 2017, ‘Needs of caregivers of persons with mental illness: Rehabilitation perspective’, Indian Journal Psychiatric Social Work 8(2), 18–22, viewed 14 December 2023, from http://pswjournal.org/index.php/ijpsw/article/view/26.
Lamb, H.R. & Weinberger, L.E., 2020, ‘Deinstitutionalization and other factors in the criminalization of persons with serious mental illness and how it is being addressed’, CNS Spectrums 25(2), 173–180. https://doi.org/10.1017/S1092852919001524
Lawless, J. & Foster, M.J., 2020, ‘Searching systematically and comprehensively’, in C.E. Toronto & R. Remington (eds.), A step-by-step guide to conducting an integrative review, pp. 21–44, Springer International Publishing, Cham.
Liu, Z., Heffernan, C. & Tan, J., 2020, ‘Caregiver burden: A concept analysis’, International Journal of Nursing Sciences 7(4), 438–445. https://doi.org/10.1016/j.ijnss.2020.07.012
Marimbe, B.D., Kajawu, L., Muchirahondo, F., Cowan, F. & Lund, C., 2016, ‘Perceived burden of care and reported coping strategies and needs for family caregivers of people with mental disorders in Zimbabwe’, African Journal of Disability 5(1), 1–9. https://doi.org/10.4102/ajod.v5i1.209
Mark, D.E., 2013, Experiences of caregivers for relatives with a chronic severe mental illness: Riding the roller coaster: A descriptive study, pp. 1–83, viewed 17 December 2023, from https://scholarworks.smith.edu/theses/1001.
Moudatsou, M., Koukouli, S., Palioka, E., Pattakou, G., Teleme, P., Fasoi, G. et al., 2021, ‘Caring for patients with psychosis: Mental health professionals’ views on informal caregivers’ needs’, International Journal of Environmental Research and Public Health 18(6), 1–14. https://doi.org/10.3390/ijerph18062964
Molepo, M.M. & Mfidi, F.H., 2020, ‘Lived experiences of young people who live with mental healthcare users in Limpopo, South Africa’, Africa Journal of Nursing and Midwifery 22(2), 1–11. https://doi.org/10.25159/2520-5293/4713
Nair, S., Jagannathan, A., Kudumallige, S., Kumar, C.N. & Thirthalli, J., 2018, ‘Need for micro-finance self-help groups among women family caregivers of persons with mental disability in rural India’, Mental Health and Social Inclusion 22(1), 34–45. https://doi.org/10.1108/MHSI-10-2017-0039
Ndlovu, J.T. & Mokwena, K.E., 2023, ‘Burden of care of family caregivers for people diagnosed with serious mental disorders in a rural health district in Kwa-Zulu-Natal, South Africa’, Healthcare 11(19), 2686. https://doi.org/10.3390/healthcare11192686
Ntsayagae, E.I., Myburgh, C. & Poggenpoel, M., 2019, ‘Experiences of family caregivers of persons living with mental illness: A meta-synthesis’, Curationis 42(1), 1–9. https://doi.org/10.4102/curationis.v42i1.1900
O’Neill, S., Horigan, G., Gray, A.M., Gibson, S., Meehan, K. & Coates, V., 2022, ‘Women’s experiences when caring for relatives with mental illness in Northern Ireland: A qualitative study’, Health & Social Care in the Community 30(5), e2033–e2040. https://doi.org/10.1111/hsc.13637
Ong, H.S., Fernandez, P.A. & Lim, H.K., 2021, ‘Family engagement as part of managing patients with mental illness in primary care’, Singapore Medical Journal 62(5), 213. https://doi.org/10.11622/smedj.2021057
Opondo, P.R., Olashore, A.A., Molebatsi, K., Othieno, C.J. & Ayugi, J.O., 2020, ‘Mental health research in Botswana: A semi-systematic scoping review’, Journal of International Medical Research 48(10), 1–16. https://doi.org/10.1177/0300060520966458
Page, M.J., McKenzie, J.E., Bossuyt, P.M., Boutron, I., Hoffmann, T.C., Mulrow, C.D. et al., 2021, ‘The PRISMA 2020 statement: An updated guideline for reporting systematic reviews’, International Journal of Surgery 134, 103–112. https://doi.org/10.1016/j.jclinepi.2021.02.003
Papaioannou, D., Sutton, A. & Booth, A., 2016, Systematic approaches to a successful literature review, pp. 1–336, SAGE, Los Angeles.
Phoeun, B., Chanthorn, L., Schulhofer, L., Khann, S., Soung, T., Conroy, K. et al., 2023, ‘“I feel hopeless”: Exploring the psychosocial impacts of caring for mentally ill relatives in Cambodia’, International Journal of Social Psychiatry 69(2), 438–446. https://doi.org/10.1177/00207640221109171
Rasmussen, N.L. & Montgomery, P., 2018, ‘The prevalence of and factors associated with inclusion of non-English language studies in Campbell systematic reviews: A survey and meta-epidemiological study’, Systematic Reviews 7(1), 1–12. https://doi.org/10.1186/s13643-018-0786-6
Shamsaei, F., Cheraghi, F. & Esmaeilli, R., 2015, ‘The family challenge of caring for the chronically mentally ill: A phenomenological study’, Iranian Journal of Psychiatry and Behavioural Sciences 9(3), 1–7. https://doi.org/10.17795/ijpbs-1898
Sharif, L., Basri, S., Alsahafi, F., Altaylouni, M., Albugumi, S., Banakhar, M. et al., 2020, ‘An exploration of family caregiver experiences of burden and coping while caring for people with mental disorders in Saudi Arabia – A qualitative study’, International Journal of Environmental Research and Public Health 17(17), 1–15. https://doi.org/10.3390/ijerph17176405
Sharma, N., Chakrabarti, S. & Grover, S., 2016, ‘Gender differences in caregiving among family-caregivers of people with mental illnesses’, World Journal of Psychiatry 6(1), 7. https://doi.org/10.5498/wjp.v6.i1.7
Siddiqui, S. & Khalid, J., 2019, ‘Determining the caregivers’ burden in caregivers of patients with mental illness’, Pakistan Journal of Medical Sciences 35(5), 1329–1333. https://doi.org/10.12669/pjms.35.5.720
Silaule, O., Gloria, N. & Adams, F., 2023, ‘Extent of caregiver burden among informal caregivers of persons with severe mental disorders in rural South Africa’, Rural and Remote Health 23(2), 1–12. https://doi.org/10.22605/RRH7509
Silva, G.A.D., Cardoso, A.J.C., Bessoni, E., Peixoto, A.D.C., Rudá, C., Silva, D.V.D. et al., 2022, ‘Deinstitutionalization and autonomy: Outcomes from a Brazilian mental health policy’, Ciência & Saúde Coletiva 27, 101–110. https://doi.org/10.1590/1413-81232022271.19872021
Smith, V., Devane, D., Begley, C.M. & Clarke, M., 2011, ‘Methodology in conducting a systematic review of systematic reviews of healthcare interventions’, BMC Medical Research Methodology 11(1), 15. https://doi.org/10.1186/1471-2288-11-15
Stanley, S., Balakrishnan, S. & Ilangovan, S., 2017, ‘Psychological distress, perceived burden and quality of life in caregivers of persons with schizophrenia’, Journal of Mental Health 26(2), 134–141. https://doi.org/10.1080/09638237.2016.1276537
The Specialist Forum, 2020, ‘Caring for the caregivers’, Psychiatry 20(4), 12–15. https://doi.org/10.10520/ejc-nm_specf-v20-n4-a5
Toronto, C.E. & Remington, R. (eds.), 2020, A step-by-step guide to conducting an integrative review, pp. 1–9, Springer International Publishing, Cham.
Verity, F., Turiho, A., Mutamba, B.B. & Cappo, D., 2021, ‘Family care for persons with severe mental illness: Experiences and perspectives of caregivers in Uganda’, International Journal of Mental Health Systems 15(1), 1–9. https://doi.org/10.1186/s13033-021-00470-2
Von Kardorff, E., Soltaninejad, A., Kamali, M. & Eslami Shahrbabaki, M., 2016, ‘Family caregiver burden in mental illnesses: The case of affective disorders and schizophrenia – A qualitative exploratory study’, Nordic Journal of Psychiatry 70(4), 248–254. https://doi.org/10.3109/08039488.2015.1084372
Vukeya, T., Temane, A. & Poggenpoel, M., 2022, ‘Experiences of family members caring for a sibling with mental illness in Giyani, Limpopo’, Curationis 45(1), 1–10. https://doi.org/10.4102/curationis.v45i1.2347
Werner, P., Mittelman, M.S., Goldstein, D. & Heinik, J., 2012, ‘Family stigma and caregiver burden in Alzheimer’s disease’, The Gerontologist 52(1), 89–97. https://doi.org/10.1093/geront/gnr117
Whittemore, R. & Knafl, K., 2005, ‘The integrative review: Updated methodology’, Journal of Advanced Nursing 52(5), 546–553. https://doi.org/10.1111/j.1365-2648.2005.03621.x
Zacharis, T., Lyrakos, G. & Zisi, V., 2020, ‘Physical activity and mental health in caregivers of mental ill patients in Greece’, Journal of Human Sport and Exercise 15(3proc), S848–S855. https://doi.org/10.14198/jhse.2020.15.Proc3.36
|
Hide
Show all
Email this article (Login required)
