Promoting Psychosocial Health of Family Caregivers of Patients with Chronic Mental Disorders: A Review of Challenges and Strategies

Abstract

The present study aimed to investigate the mental and social health challenges of family caregivers of the patients with chronic mental disorders (CMD) and strategies which can be helpful in this regard. This study is a narrative review conducted in PubMed, Web of Science, Scopus, Elsevier, Google Scholar, Proquest, Magiran, and Sid databases where keywords such as Family caregiver, Chronic Mental disorder, Health Promotion, Program, Psychosocial, Support, Challenge, and Problem were searched in both Persian and English. A total of 5,745 published documents were found and were screened based on inclusion and exclusion criteria. Finally, 64 studies were found which had examined the related challenges, needs and strategies. According to the results, information deficits, needs for support, community participation deficits, and psychological suffering were recognized as challenges of family caregivers of these patients. Moreover, empowerments programs for the enhancement of the knowledge and skills of caregivers and peer-centered support programs were used to improve the level of mental and social health of family caregivers of these patients. Psychosocial problems and challenges that family caregivers of the patients with CMD face affect their health, satisfaction and quality of life. Using a collaborative approach, mental health service providers and government systems can help improve the psychosocial health of caregivers. The related managers and policymakers can reduce the emotional and psychological burden of families and promote their psychosocial health through developing a comprehensive program including practical objectives and strategies and taking into account the challenges that exist for caregivers in caring for patients with CMD.

INTRODUCTION

Mental health is one of the main components of public health in societies. Mental health problems are critically increasing in many parts of the world.1 As estimated, about 19% of the world’s population suffers from at least one of the various types of mental disorder as one of the main causes of disability.2

Nowadays, along with advances in psychiatric services, the treatment of patients with chronic mental disorders (CMD) has changed and the care places have been relocated from medical centers and hospitals to homes. The assumption is that if patients with CMD are treated and cared for in society and family, their disease will be less likely to recur and they might be given the opportunity to return to work and personal activities. Following this policy, the number of patients with CMD who are cared at home has increased significantly,3 making families the main support system in the ongoing care of such patients.1 As a hidden healthcare system, family care is located alongside the health system and has become an institution where patients with mental disorder live.4 Therefore, family care is known as the most important source of support in the care, symptom management and treatment process of these patients.5,6 Accordingly, CMD in any members of a family will lead to psychological, social and responsibility burdens not only for the patient, but also for all family members,7 which will start from the very onset of the disease and continue throughout life.4 This requires a tireless effort that irrefutably impacts the lives of these caregivers.8

After the onset and diagnosis of the disease, family caregivers come to know that they alone are not able to deal with the disease and the various related duties considered for them, and hardly can confront the prevailing attitudes in society about mental diseases. However, it should be noted that family care efforts are rarely defined nor recognized.9 These caregivers experience a great deal of care-related burdens, negative emotions, and difficulty in coping with such issues. Thus, their ability to cope with and adapt to these conditions is impaired, which is a significant threat to their own mental and social health, affecting their life in general.1,3 Because of these reasons, families need help at different stages of the disease.10

Moreover, it is often observed that the main focus of the healthcare team is on the needs and treatment of patients not the needs and health of family caregivers. Accordingly, family members of patients with CMD are referred to as “second-order patients.” Despite carrying numerous psychological and social burdens, these caregivers lack adequate support resources and readiness to care for their patients.3 Given the significance of family members as key caregivers of patients with CMD, lack of attention to their mental and social health can lower their quality of life,5 leading to the recurrence of the patient’s mental illness and the formation of a vicious cycle in this regard.11 When caregivers feel that they are receiving adequate support from professional caregivers in the process of caring for their patients, they accept their role more hopefully and optimistically which in turn will reduce the risks of caring the burden.12 As such, families of patients with CMD, as the hidden healthcare system and a significant part of the mental health system, need to be supported properly.13 Thus, the present review aimed to investigate the social and mental health challenges of family caregivers of patients with chronic mental disorders and strategies which can be helpful in this regard.

METHODOLOGY

This narrative review was conducted in 2021 with the aim of recognizing the challenges and strategies for the promotion of the mental and social health of the family caregivers of patients with CMD. Studies were reviewed using keywords such as Family caregiver, Chronic Mental disorder (schizophrenia OR Bipolar mood disorder OR BMD OR Depression OR Manic), Health Promotion, Program, Psychosocial, Support, Challenge, and Problem. These keywords were searched in the databases of PubMed, Web of Science, Scopus, Elsevier, Google Scholar, ProQuest, Magiran, and Sid in both Persian and English languages and using “AND” and “OR” operators. A total number of 5,745 published documents were found and were screened based on inclusion and exclusion criteria. Inclusion criteria were studies examining the problems and needs of family caregivers of patients with CMD, studies published from 2000 to 2021, published in English or Persian only, available in full text, and quantitative and qualitative, cross-sectional, descriptive, and review studies. Studies such as letters to editor, protocol studies and studies whose primary focus was on patients, not their caregivers, were excluded from the study. After reviewing the inclusion and exclusion criteria, the titles of the studies were reviewed and the unrelated ones were removed. Then, the abstract of the articles was studied and if an article was consistent with the aim of the study, its full text was retrieved and used in this study. Finally, we found 64 articles that examined the challenges and needs or provided solutions in this regard.

Using the previously mentioned keywords, 5,745 articles were found. Out of these articles, 319 articles were duplicate, 291 were published before 2000, 35 were in non-English languages, 21 other articles were excluded because of lack of access to their full texts, and 5,015 articles dealt with other issues.

Of the 64 articles included in the study, 45 studies examined the psychosocial problems and needs of the family caregivers with CMD (Table 1) and 19 studies dealt with interventions for the promotion of the psychosocial health of these caregivers (Table 2). After completing the review process, the data were obtained as codes of the topics related to the aim of the study and were qualitatively categorized by the members of the research team to find the main categories (Table 3).

TABLE 1. psychosocial problems and needs of the family caregivers.

TABLE 2. studies conducted focusing on improving the psychosocial health of caregivers.

TABLE 3. Challenges and strategies for promoting social mental health of family caregivers of the patients with chronic mental disease.

PSYCHOSOCIAL CHALLENGES OF CAREGIVERS

1. Information Deficit

One of the most important challenges the family caregivers of the patients with CMD encounter is the lack of information about the nature of the disease. The eed to be informed about mental disorders,1,14,15,16,17,18,19,20 need to be familiar with the behavior of patients,15,21,22 getting adequate information about the symptoms and course of the disease15,17,20,21 and treatment methods,18,21 conditions of the diseases, conditions of severity and recurrence of the disease and methods of preventing this recurrence,20 recognition of early warning signs of the disease,9,22,23 the need to obtain information about the limitations caused by the disease in the individual, social and professional life of patients, being aware of the patient’s physical health,23 the ways of managing the symptoms of the disease16,18,21,23,24,25 and communicating with the patient in a way that can prevent conflict between the patient and caregiver16,17,26,27 were among the issues mentioned by the family caregivers.

Medication used by these patients is another concern of the families. A need to get informed about correct medication,14,17 side effects of drugs and how to deal with them,17,18,20 emergency drugs and sedatives14 and the need to adhere to medication regimens and follow-up treatments23 are among the challenges which should be managed by the families of these patients.

Based on the results of some of these studies, when discharging mental health patients from medical centers to the families of these patients, there is a need to have some information about post-discharge care and how to prevent re-hospitalization,23 complications and risks of not adhering to the treatment process, rehabilitation of the patients,15 management of emergency situations such as suicide, aggression and anger of the patient and how to encourage their patients to cooperate in the treatment process.23

2. Need to support

The lack of government support and healthcare support are among other problems the family caregivers of the patients with CMD encounter. Given the chronicity of the disease and the lifelong use of drugs, the families of these patients expected to be financially supported by the government to buy their drugs or the drugs should be provided to them for free.1,15,20,25,28 Further expansion of health insurance coverage,21,26 establishment and increase of rehabilitation centers and institutional care institutions,28,29 low-cost hospitalization and rehabilitation,14,30 provision of more resources to specialized psychiatric institutions and providing these patients with good jobs and financial support24 are among the problems that these families expect to be solved by the government.

Moreover, support of the mental healthcare team to pay more attention to the educational needs of caregivers,15,21,31 improvement of communication skills in mental health professionals,24 and increased participation of caregivers in care-related decision-makings15,18,24 are other needs of family caregivers that should be considered.

Additionally, the increased workload imposed by numerous care roles, as well as the lack of understanding that the care duty are heavy burdens on the shoulders of the family while they may be receiving no assistance or support from relatives and acquaintances,16,21,31 being left alone in medical expenses or financial crises imposed on the family because of the unemployment of the caregiver or the patient,15,31 and the lack of coordination and agreement of the family on care-related issues7 suggest that families should be supported to promote the psychological and social health of caregivers.

3. Community participation deficit

Having a patient can greatly impact the social relationships of family caregivers. Distance from family members, friends and acquaintances,15,27,32,33 educational and occupational problems among family members,20,34 disruption of leisure and recreation,21 imbalance between one’s job and patient care, social stigma,16,17,31,35 negative attitudes, discrimination and prejudice,15 isolation of both caregivers and patients23,24,36 and conflict over disease disclosure37 are among the social challenges for these caregivers. As such, there is a need to improve communication with relatives, community members and the treatment team.22,23,24

4. Psychological suffering

Family caregivers of patients with CMD suffer from many emotional and social problems from the time of encountering the illness. Psychological and emotional burdens of care,21,33,37 feelings of helplessness,1,24,36 feelings of shame and embarrassment,21,24,36,38 anger, fear, depression and anxiety,1,21,23,24,39 boring and monotonous lives,21,32 lack of peace and security,21 concern about the future of the caregivers themselves,15,21 feelings of distress and sadness,18,23,24,31,33 frustration caused by the chronic course of the disease,7 a sense of guilt, self-blame or blame of the patient,16,23,24,33,36 concern about the patient’s future,15,23,26,31 decreased quality of life,36 feelings of losing one’s identity,40 concern about patients’ tendency to have violent behaviors,21,31 hiding the disease,36 feelings of inadequacy and victimization, emotional burnout,40 low self-esteem,36 care-caused fatigue and stress,33 involvement in different roles and change of roles1,40 are among the psychological challenges that families face.

STRATEGIES TO PROMOTE PSYCHOSOCIAL HEALTH OF CAREGIVERS

1. Empowerment program

Psychosocial empowerment programs are known as health promotion methods for family caregivers of patients with CMD. These programs can improve caregivers’ knowledge of the disease nature, illness management and treatment methods, and develop the skills, known as “life skills”, in family caregivers.

Conducting a psychosocial program based on information and emotional support, Hajisadeghian et al. argued that the implementation of this kind of program could reduce perceived stress in family caregivers of patients with CMD.41 In the study of Abedi et al., the implementation of planned behavior problem-solving improved the adaptation style in family caregivers of these patients.42,79 Gerkensmeyer et al. also indicated that problem-solving intervention improved depression, burden, and personal control in the family caregivers of patients with CMD.43,80 The program based on the education of communication skills and reduction of violence in the families of patients with schizophrenia has been able to significantly decrease the expressed emotions and improve family empowerment and hope in families.44 Implementation of programs based on the provision of information to caregivers can improve the relationship between the caregiver and the patient and help reduce the expressed emotions.45

In review of the studies, psycho-educational programs were used as the most important methods for improving the level of the caregivers’ knowledge and skills. Researchers have asserted that these programs can be effective in reducing individual dimensions of stigma, burden of care,46 and also in promoting family tolerance, caregivers quality of life,47 caregivers’ emotional regulation and improvement of psychological symptoms.48

One of the methods that can increase the knowledge and life skills of caregivers is virtual psycho-educational programs. These programs can be implemented through web-based applications and sites and can be as effective as routine care (face-to-face).49 Today, with the availability of smart phones and the spread of Covid-19, virtual programs have become more popular as they can save more time and money for both families and therapists.50

2. Peer support programs

Peer support programs also improve psychosocial health in family caregivers of patients with CMD. Peer support services are new interventions that have recently been adopted in mental health systems worldwide. A peer is defined as an equal, someone with whom they share demographic or social similarities and are able receive support, empathy, encouragement, and help from each other. People with shared experiences can offer support and help to each other in a mutual relationship. Peer support in mental health can be defined as “help and support that people with experience of caring for a mental illness or disability have learned and can pass on these experiences to others”. These people are transformed from receiving services to providing support.51 Membership in such groups should be used as one of the main strategies for caregivers to adapt to the burden of caring for a patient with CMD.29

DISCUSSION

This narrative review was conducted to identify the psychosocial challenges of the caregivers of patients with CMD and examine the evidence found in addressing these challenges. Lack of information about the nature of the disease, treatment, and methods of management and rehabilitation of the patients is one of the most important challenges for the families of these patients.52 In fact, because of inadequate information about CMD, family members feel powerless. They, accordingly, fail to provide the patient with appropriate support1 and, as they are unsure about future events, they are confused and overwhelmed by negative emotions.18,24 According to Sharif et al. [2020], inadequate training of the caregivers in managing the signs and symptoms of the disease and their lack of knowledge of care have been mentioned as major challenges of caregivers.37,54

Based on another finding of this research, families of these patients need to be supported by healthcare centers and government. According to some caregivers, specialists lack empathy, do not listen to them properly, blame and criticize them, and neglect them. Caregivers tended to have a closer relationship with physicians and the treatment team, and these relationships were mentioned as the most stressful factors of their care experience.24 As Sharif et al. [2020] suggested, the mental healthcare system is professionally responsible to provide comprehensive care to family caregivers in the form of counseling, supportive care, promotion of self-care activities, education of effective coping strategies, and health education as well. Support services provided by the care team can prevent physical, mental and social burnout of caregivers, thereby increasing society’s mental health awareness.37,54 Accordingly, having an optimal relationship with mental health professionals is one of the biggest challenges for caregivers. In Ebrahimi’s study [2018], there was no sufficiently adequate relationship between mental health professionals and families, causing loneliness in caregivers.45,52 The continued communication of mental health professionals with family caregivers provides caregivers with more feelings of security and improves their psychosocial health.23

Additionally, society-based interventions, government support and rehabilitation for patients with CMD can, as an investment, improve the mental health of caregivers.9 In their study, Chen et al. (2019) offered suggestions regarding government policy support for the caregivers of patients with CMD, including further expansion of health insurance coverage for mental illnesses, entrepreneurship and financial support for these patients, free medication, hospitalization and low-cost rehabilitation means, and provision of more government resources to specialized psychiatric institutions.15,21

The presence of disruption of the social participation of caregivers was another finding of this study. The most important reason for this challenge is the social stigma toward mental illnesses. Fernandes et al. (2021) believe that social stigma is a barrier to the resilience of the family of these patients, and it seems that the occurrence and impact of these stereotypes cannot be prevented.16,22 In order to deal with stigma in society, families often choose isolation and withdraw themselves from society. They believe that they can prevent the disease from being revealed by hiding the disease of the family member and delaying the patient’s treatment. The inappropriate reaction of society has negatively affected the social interactions of these people and has excluded and isolated the family from society, causing ultimately an adverse effect on the mental health of the family. All families are worried that relatives and acquaintances will find out about this disease. The labeling of these diseases and the fear of social scandal make them act more cautious in their communication and thus suffer a lot of mental pressure and stress.37

Among the other problems of caregivers revealed in many studies was the experience of psychological problems by caregivers. Family caregivers experience different types of care-related burdens which can disrupt their psychosocial integration. Psychological burden is the most severe challenge experienced by the family caregivers of the patients with CMD. They experience shock, sadness, depression, fatigue, helplessness, and inability to understand the situation.37

However, support is being provided to address these psychosocial problems experienced by these caregivers. Psychosocial empowerment programs can significantly improve or enhance the caregivers’ knowledge and skills so that they can manage the care situation and provide appropriate care to patients. These intervention programs usually include emotional release, participation in group work programs, cognitive therapies, training, and counseling. These programs can also improve caregivers’ problem-solving skills and quality of life, causing positive results such as relieving care-related stress and increasing the relaxation of the caregivers of the patients with CMD.41 In several studies, the caregivers are empowered through the implementation of psycho-educational interventions. Family psycho-education assumes that the family members of a patient with CMD need information, help and support in order to take care of the patient in the best way and cope with or adapt to the related challenges. This model combines elements of cognitive therapy, information, behavior, problem solving, communication, and counseling, thereby reducing anger, confusion, and emotional distress for the patient’s family.53 Kumar et al. referred to two categories of treatment-related information and the nature of the disease, and believed that psycho-educational programs can maintain adherence to treatment and lead to better results.20,30 According to Sin and Norman [2013], although psycho-education is consistently effective in improving knowledge and methods of coping, it has a lesser effect on changing psychological illnesses, care burdens, and expressed excitement. Common components of a psycho-educational program should include adaptation and problem-solving strategies to enhance communication skills and improve adaptation. As an evidence-based treatment method, psycho-education provides information about illness and situation management. The benefits of this method for family members include increased knowledge, which usually promotes adaptation, self-efficacy, and social support in caregivers.54,82 Al-Sawafi [2020] concluded that although psycho-educational interventions lead to positive results for the families of the mental patients, it should be consistent with the cultural models of each country.55,83

Peer support programs include support or services provided to people with mental health problems by other people who have experienced mental health problems themselves. Peer support, as a method of promoting recovery for family caregivers of patients with CMD, improves self-efficacy and hope through sharing experiential knowledge and coping strategies used.56 Additionally, as evidence-based intervention, it has been recommended by national and international clinical guidelines.55

The implementation of Family-to-Family Support Programs by Bademli and Duman had a positive effect on coping strategies and mental health status of the caregivers of patients with schizophrenia.57 Studies have revealed the benefits of mutual support groups in maintaining the psychological and social well-being of the family caregivers of patients with CMD. According to studies, the implementation of this program can effectively reduce the burden of care and increase family performance,58,59 making the family provide effective care for the patients with CMD.60 The use of this program in 12-month, 24-month61 and 4-year follow-ups increased family performance and led to more social support for families. As such, using this program is considered to be an effective psychosocial intervention for reducing the psychosocial problems of these caregivers.62

In the quantitative review of the literature, a good number of studies have been conducted in the field of family caregivers of the patients with chronic mental illnesses. There was an sufficient number of articles investigating the problems and needs of caregivers of the patients with CMD. There was also an attempt in interventional studies to empower families by teaching some skills often in the form of group psychological training to them. Although the programs implemented for the caregivers of the patients with CMD were able to improve some aspects of their health, the authors of this study did not come across a comprehensive program with appropriate strategies and responses to all problems and psychosocial needs of these caregivers.

The results of this study can be utilized in clinical, educational and management departments. Gaining a deeper insight into the needs and psychosocial problems and using methods to improve the psychosocial health of family caregivers of patients with chronic mental illnesses, mental health professionals can try to establish empathetic communication with these caregivers, solve their problems and address their questions and uncertainties. Holding programs such as workshops and training classes for students and members of the mental health care team can be beneficial. Moreover, given the lack of an appropriate infrastructure for the implementation of family-oriented services for this group of caregivers, the results of this study testify to the need for transforming the patient-oriented services to comprehensive patient- and family-oriented ones. Therefore, the managers and policymakers of this field should take into consideration the required manpower and employ experts to implement these kinds of evidence-based programs.

This study has several limitations. First, as this study was a narrative review, it could not meet the inclusion and exclusion criteria of articles like a systematic review of studies or meta-analysis. As such, it was impossible to review all the articles in this study. Second, this study reviewed the articles published only in English or Farsi and, thus, we lost the opportunity of reviewing other related studies published in other languages. Third, because Isfahan University of Medical Sciences does not support access to some publications, we did not have access to the full text of all articles.

Generally, based on the results of this review, it was found that psychosocial problems of the family caregivers of patients with chronic mental disorders, including inadequate information, need for support, social problems and mental health, can affect their health, satisfaction, and quality of life. Empowerment of caregivers and peer support can be good strategies for improving the health of these caregivers. Moreover, despite emphasis on the significance of psychosocial health, there are still many challenges in this regard. For instance, as there are no standard and comprehensive guidelines and programs for psychosocial care, this care is not implemented as part of the treatment process. Therefore, in order to remove barriers and psychosocial challenges, a need is felt for developing a comprehensive program including practical objectives and strategies by taking into account the challenges that exist for caregivers in the process of caring for patients with CMD. There should be collaboration between health service providers and government systems in order to resolve the psychosocial challenges of these caregivers.