Background: In recent decades, it has been observed that the literature and research on face-to- face family interventions for caregivers of people with Severe Mental Disorders (SMD) has decreased significantly. However, the use of online interventions with family members of people affected by SMD seems to emerge as a promising complementary strategy to face-to-face care, and although in an incipient and limited way, it is occupying a growing focus of interest in the literature.
Objectives: The article presents a brief narrative review of the current landscape of online family interventions aimed at caregivers of people with SMD. The main novelty of the narrative review presented in this article is the breakdown of the different elements and components explored in the limited literature on online interventions, providing a synthesis of the following aspects: Digital interventions in mental health; Components and quality criteria; Research on network interventions; Psychoeducational interventions.
Methodology: As this was a narrative review of online family interventions and given the limited literature available, no specific research methodology was used and no specific criteria were established for the selection of the studies included in this review. The methodology used was qualitative.
Results and Conclusions: As this is a narrative review, it is not possible to offer specific results or conclusions based on evidences. However, after the review conducted if it is possible to point out these two elements for future research: [1] Online care and support for family members of people with SMD can be a complementary intervention strategy to face-to-face care. [2] The online family intervention format could be incorporated into routine clinical practice in health care services and should be the subject of further research.
From the person-centered community care and recovery model, care and support programs for families of people affected by Severe Mental Disorder (SMD) are currently considered essential. This has been indicated in multiple clinical guidelines and in international recommendations: PORT [1]; APA [2]; NICE [3-5]; Australian and New Zealand [6]; Canadian Schizophrenia Guidelines [7]; British Psychological Society [8]. However, the gap observed between these recommendations and their implementation in clinical practice within health care services has also been pointed out. There is a scarcity of implementation and dissemination of structured family intervention programs, integrated as an element within the global treatment of the severe mental disorder. The process of psychiatric deinstitutionalization in the mid-twentieth century, meant the return of many people with severe mental disorder to their homes. Families began to be considered as relevant agents in the care and supervision of patients. It was clear that someone had to fulfill this function, which until then, had been carried out in the context of the hospitals’ and asylums’. But the role of families in recovery was still far from defined. At the same time, theories about the influence of families in the cause of schizophrenia, which prevailed until more than half of the 20th century, were losing relevance.
For several decades, it has been pointed out that the attention to family members of people with SMD, presents a gap between the recommendations indicated in multiple clinical treatment guidelines and the scarce actual implementation of Family Interventions (FIs) in routine clinical practice. Thus, for example, in the study by Lehman and Steinwachs [9] carried out for PORT (Guidelines), it was found that only one third of the families of people with SMD received information about the illness from professionals. It was also pointed out that approximately 40% of the families had no contact with these professionals, and that when these contacts existed, they were informal and not part of the overall treatment, as indicated by Dixon [10].
Many of the initial models of family intervention emerged from non-care settings (universities, research). Despite the data supporting family interventions [11]; Sin and Norman [12]; Lyman, et al. [13], their use by care settings was still scarce. And it was noted that the dissemination of this type of intervention presented some difficulties. A couple of decades ago, Dixon, et al. [14] pointed out several difficulties for the implementation of FIs, which could come from the families themselves, from clinicians or from managers. Along the same lines, Amenson and Liberman [15]. Subsequent studies have continued to analyze barriers and facilitators of family interventions [16-18].
Eassom, et al. [16] conducted a systematic review m which aimed to explore the barriers, problems, and the facilitating factors for the implementation of FIs. The authors concluded that:
Onwumere, et al. [18] conducted an extensive narrative review of the problems of implementating family interventions of people suffering from psychosis. They pointed towards two central aspects:
Other works have focused on the need to involve people with SMD and their loved ones in the design of new family interventions that are more oriented to the real needs of families [19]. Future family intervention programs and designs will have to face this and other new challenges. For these reasons, it should be investigated whether it is possible to consider the use of technological tools and new intervention formats for caregivers, given the current discouraging landscape of face-to-face support for families.
Recent programs, which include participation strategies focused on target subpopulations with poor prognosis, or use the new technologies, can contribute to making FIs more accessible to a greater number of families. Also, it is necessary to pay attention to the possible digital gap that family members may have, due to lack of knowledge or inadequate use of technological tools. In any case, technological advances and their widespread social use are an unquestionable reality.
Thus, in recent decades, the use of technological tools, social networks and the Internet has experienced spectacular growth. In data from 2023, the International Telecommunication Union (ITU) report states that the number of internet users globally reached 5.16 billion people, which represents 64.4% of the world's population. This undeniable reality has not gone unnoticed in the field of healthcare, where, in the last two decades there has been a notable increase in the use of new technologies in different healthcare fields, with digital interventions aimed at different populations with different pathologies.
The use of technological tools and online interventions with family members of people with SMD or other serious chronic disorders seem to emerge as a promising complementary strategy to face-to-face care and has been a growing focus of interest in the research field and scientific literature. Barbeito, et al. [20] point out in their review, that multiple studies show that online interventions for family members of people with SMD are feasible and effective and contribute to symptom improvement in both patients and their families. Along the same lines, the systematic review by Graven, et al. [21]. Hansen, et al. [22], also indicate that these types of interventions contribute to reducing caregiver distress.
Some studies have contributed to the consideration of this type of intervention in recommendations and policies on mental health [23] of different countries. Other studies have focused on the effectiveness and positive impact of these interventions in reducing health care costs [24-27].
In the narrative review conducted, it is worth noting some studies that incorporate novel elements and some recommendations on online family interventions. They are the following:
The following is a brief narrative review of the current landscape of online interventions, with special emphasis on their applicability to the field of mental health. The following themes will be broken down:
The main characteristics of digital interventions in the field of mental health, their possible and diverse applicability with patient-caregivers and the potential of such interventions, have been described in several papers. Some contributions have been aimed at reviewing the potential of Internet-based interventions to improve clinical and psychosocial outcomes in people with psychosis [43]. This paper also reviews the evidence on such digital interventions, their potential benefits or harms, and current challenges. As potentially effective interventions, the authors point out:
Álvarez-Jiménez, et al. [43] also point out that online interventions should be designed to complement and not replace standard care. Álvarez-Jiménez, et al. [43] conclude, that future interventions should be guided by the expressed needs of users and caregivers, paying particular attention to ethical, privacy and clinical safety issues, and emergency procedures.
Other works have reviewed the literature and research on digital interventions in mental health, developed in the first decade of this century, including their applications, strengths, limitations and evidence base. In this regard, the study by Lal, et al. [32] is worth noting. They apply for the review, a methodology of rapid synthesis of relevant knowledge, commonly used to inform and guide strategic decisions and debates related to health policies. Based on their findings, they make some considerations for future research and practice of networked interventions. The authors emphasize:
Along the same lines, the work of Mateu-Mateu and Navarro [44]. The study analyzes the keys and current evidence described in the literature, about the application and use of new technologies (TIC) in people with Severe Mental Disorder (SMD), as well as the benefits and/or harms that could be derived. The authors focus their analysis on three areas of intervention:
The results, in general, indicate the advantages of these TIC based interventions and their positive impact on people with SMD. Mateu-Mateu, et al. [44] also point out some elements that may negatively influence this effectiveness. These are:
Hirschtritt, et al. [45], summarize the current state of digital mental health, noting the current needs that new technologies can address and what these digital interventions can offer in SMD care. The authors point out some limitations of the current digital mental health landscape that are worth considering. These include:
In the contribution of Williams, et al. [46], a review of studies dedicated to the use of these tools and the effectiveness of networked interventions, based on the recovery and self-management model of illness is conducted. Williams, et al. [46] point out, that users of services that facilitate this type of tools actively contribute in the planning of their treatment. And that also, it allows to increase the possibility that users can communicate with professionals and peers about what is important to them. Finally, they suggest that it is necessary to clearly define strategies and use agreements between services, professionals and users; who is going to initiate the use, what should be the frequency of use, regulation of “face-to-face” interventions and of “online” interventions.
As a conclusion of this section, it can be noted that the use of digital interventions is making its way as an appropriate strategy in the care of SMD. However, the results of its effectiveness should be the subject of further research. There are also some well-founded objections on certain aspects. Among them:
For the design and implementation of digital interventions in mental health, some basic criteria and components that should be especially considered have been pointed out. Attention to the criteria expressed by the caregivers and patients themselves is one of the most recurrently pointed out components. The contribution of Kerr, et al. [28]) should be noted in this regard. This study determines the requirements of caregivers and patients participating in long-term interactive interventions (IHCA). Of particular interest is the authors' identification of the criteria indicated by caregivers and patients to evaluate the quality of the different interventions. They distribute the caregiver and patient criteria into four areas related to:
The systematic review by Guay, et al. [29], aimed to, update the available evidence on the efficacy of Internet-based interventions for caregivers. Guay, et al. [29] review the components of these interventions, the techniques used for caregiving coping, and how all of these impact the effectiveness of the intervention. The authors focus the study on three types of interventions:
In terms of components, a combination of online interactive activities and the provision of support seemed to generally lead to better caregiver outcomes. Exercises, tasks, and questionnaires were the most commonly used components in the online interactive activities category and appeared to be part of the success of effective interventions.
Support, whether provided by a healthcare professional or by peers, in a synchronous or asynchronous way, was a widely used component of the included interventions, and could explain the therapeutic efficacy of these Web-based interventions. Guay, et al. [29] note that:
Guay, et al. [29] conclude, that Internet-based interventions that incorporate professional and social support, and provide instructions for changing behavior and solving problems in an interactive manner, appear to lead to positive caregiver outcomes.
As indicated above, the inclusion of caregivers and patients in the design of digital interventions has been identified as one of the basic components of this type of interventions. In the study by Sin, et al. [30], a participatory research methodology that includes caregivers and patients in the design and construction of the process is integrated to improve the utilization and acceptability of such an intervention. The components are:
After brainstorming, the participants decided to call the intervention, “COPe-support” (Carers for People with Psychosis e-support). The intervention comprised several sections structured in modules: psychoeducation, communication and problem-solving skills, reflective exercises and discussion points. This group of authors presents in subsequent work, a randomized controlled study protocol to evaluate the effectiveness of this COPe-support intervention with caregivers of people affected by psychosis, to promote mental well-being and caregiving experiences in family members Sin, et al. [47].
From the research field, networked interventions aimed at caregivers and their effectiveness outcomes have been reviewed. In the valuable study by Onwumere, et al. [31], the authors conduct a systematic review of the most relevant outcome studies on the effectiveness of these types of strategies aimed exclusively at caregivers. The results of this review indicate that it is not possible to provide definitive data on the impact of digital interventions on caregivers. They note that most studies focus on the feasibility and ease of use of these strategies, and generally focus on the development and use of the digital tool for the provision of relevant information about psychosis (psychoeducation), delivered as part of a structured psychoeducational program, or through different stand-alone modules. Preliminarily, the results suggest that caregivers of patients with SMD may benefit from the use of digital technologies and that the approach may be acceptable, but there is a lack of uniformity in terms of key areas to measure as outcomes. For example, measures of caregiver support and social network were absent in these networked interventions. Onwumere, et al. [31] point out, that caregivers of psychotic patients are up to ten times more socially isolated than the general population, and that it is therefore important to extend the literature on digital technology outcomes beyond simple indices of acceptance or satisfaction. The authors also point out, that the large number and variety of reviewed studies on digital interventions, widely established and validated for patient mental health care, have not yet been replicated in the same way for caregivers. Onwumere, et al. [31] conclude, that the potential contribution of these digital interventions for caregivers of psychotic patients, and their role in coping with their specific information, support and well-being needs, merits further clinical and research interest.
Along similar lines, the work of Sherifali, et al. [40] is worth noting. The aim of this meta-analysis was to examine different types of Internet-based intervention programs and their impact on caregivers' mental health outcomes. The review found evidence of effectiveness in reducing depressive symptoms, stress, caregiver distress and anxiety. The types of interventions that predominated as effective included information and education with or without professional psychosocial support and, to a lesser extent, with combined professional and peer support.
Ploeg, et al. [48], perform a second installment of the review described in the work of Sherifali, et al. [40]. The main objective of this meta-analysis was to examine the effect of Internet-based interventions targeting caregivers of community-dwelling patients affected by at least one chronic disease, compared to minimal or no other Internet-based interventions. Outcomes regarding burden, quality of life, self-efficacy, coping with problem behaviors, self-esteem, stress and social support are reviewed. As a secondary objective, the effect of different types of Internet-based interventions such as, psychoeducation, psychosocial and professional support, and electronic follow-up of the care receiver, is evaluated in comparison with no or minimal Internet-based interventions. The results of the meta-analysis demonstrate:
The authors point out some limitations of the reviewed studies that may justify these not very consistent findings. Among them:
Regarding the effect of different types of interventions, the authors indicate that support, whether professional or peer support or a combination of these, plays an important role in improving caregiver outcomes. Ploeg, et al. [48] conclude that, overall, there is cumulative evidence of the positive effect of caregiver-focused Internet-based interventions to support family and friend caregivers. However, future high-quality research with more rigorous designs, larger sample sizes, and use of standardized tools that facilitate meta-analysis and assessment of clinical relevance are needed to better understand the effect of such interventions, particularly multicomponent interventions using peer or professional support.
In the systematic review by Spencer, et al. [49], an attempt is made to establish the current status of Internet-based interventions for caregivers of people with psychiatric or neurological disorders through the investigation of:
The findings found that the studies reviewed on the effectiveness of these types of interventions on caregivers' mental health offer a “mixed landscape”. However, caregiver participants clearly indicated that Internet-based interventions were highly acceptable and easy to use. This may indicate that caregivers are willing to integrate Internet-based interventions into their daily lives. Spencer, et al. [49] conclude, that future research should seek to establish the most effective strategies, technology tools, and content delivery with the greatest impact on caregivers' mental health.
In general, the models and programs of face-to-face family intervention contemplate, in one way or another, certain basic components related to specific contents that are developed in a structured way in modules, with greater or lesser temporal extension. These include the psychoeducational component, the reduction of family stress-burden, strategies for coping with the disease, and strategies for family self-care. Likewise, online interventions aimed at caregivers often incorporate these elements. Some reviews and studies published in recent years are described below.
In the work of Rotondi, et al. [50], they examine the effectiveness of an internet-based psychoeducational program for caregivers and patients compared to standard treatment. They find a significant reduction in positive symptoms, and an increase in knowledge of schizophrenia, compared to their standard care counterparts.
As a conclusion to their findings, Rotondi, et al. [50] suggest, that online delivery of treatment and psychoeducational resources to caregivers and patients offers considerable potential for improving their well- being.
Other subsequent contributions have evaluated the efficacy of these interventions in reducing caregiver stress. Of particular note, the systematic review by Hu, et al. [51]. Internet-based interventions involving caregivers of patients with various somatic and psychiatric pathologies were included in a randomized controlled trial or open-label setting. The authors extracted data regarding participants, interventions and outcomes. For controlled trials, the quality of the methodology was also examined. Studies that did not incorporate formal assessment of caregiver stress, caregiver burden and quality of life were excluded. Online modalities that promoted caregiver interactions such as support groups and chat rooms were found to be widely used and valued. These technologies can overcome barriers such as distance, travel costs, and limited availability of caregiver time. The authors note that Internet-based interventions were mostly effective in reducing caregiver burden and stress and improving caregiver well-being. Hu, et al. [51] conclude, that further research is needed to evaluate:
In the study by Soto-Pérez, et al. [52], an intervention for caregivers of people diagnosed with schizophrenia is described, through the Web platform (PSICOED) that allows the development of online treatments in a synchronous and asynchronous way. In this study, three conditions were compared; traditional psychoeducation program, the same psychoeducation program developed online through the PSICOED platform, and a control group without specific psychoeducational intervention. A quasi- experimental mixed qualitative and quantitative design was used, with pre and post measures, carried out in the mental health area of the province of Zamora (Spain). Fifty-nine families of people with a diagnosis of schizophrenia were selected, grouped into three conditions:
The authors found no significant differences in the working alliance between the two psychoeducational models. Both treatments differed statistically from the control group in terms of the knowledge that the families attained about the disease. Qualitative results suggest that the online intervention is better than expected and more comfortable than the traditional one. Soto-Pérez, et al. [52] conclude, that online interventions are possible and as effective as the usual face-to-face interventions.
There are some experiences on network interventions aimed at caregivers of patients with early psychosis. In this regard, the contribution of Chan, et al. [53] should be noted. The paper describes a network intervention for caregivers of young patients developed in Hong Kong, and carried out through an interactive psychoeducational self-help program, from a self-management approach. This program, called IPEP, provides a comprehensive online resource center with a communication forum to facilitate the exchange of information between health professionals and caregivers. The program covers a wide range of content and services.
In the contribution by Honary, et al. [33], a Web-based intervention is described, using a user-centered approach, and aimed at providing psychoeducation and coping strategies to support the informational and emotional needs of family members of people with psychosis. The intervention is based on the REACT (Relatives Education and Coping Toolkit) program. Of particular interest is the description of the experiences reported by family members and the need for professionals to consider:
Some works have examined what are the main perceptions of caregivers about this type of interventions. Vaughan, et al. [54] should be noted in this line. The authors conduct a mixed methods study using quantitative survey data, qualitative focus group data, and interviews with selected caregivers in a web-based peer support intervention. The intervention was delivered through a Web site that featured interest groups organized around specific topics: webinars, web-chats, and messaging functionality. The findings suggest that Web-based peer support interventions may lend themselves better to the provision of informational support and be complemented by other interventions delivered by peer groups to more effectively meet the emotional support needs of caregivers.
The delivery of networked psychoeducation for caregiver-patients has also received attention in others works. In this regard, Fitriani et al. [55]. The study reviews recent research on the use of online psychoeducational intervention for caregivers and patients with bipolar disorder. The authors point out, that online psychoeducation should be developed not only with patients, but also with family members and especially with primary family caregivers. Fitriani, et al. [55] point out, that online psychoeducation can also save costs and facilitate access to services to get the information patients and their families need.
The efficacy of self-guided interventions for caregivers has also been evaluated by means of an Application (App) on Smartphone devices. The recent contribution of Fuller-Tyszkiewicz, et al. [56] is worth mentioning. The authors present a randomized controlled trial conducted in Australia, which evaluates the use and efficacy of these applications in reducing the stress of caregivers of patients with mental or physical disabilities. The single-blind study analyzes two types of interventions.
It is hypothesized that the App-based intervention would be associated with decreased levels of depression, anxiety and stress, and increased well-being, self-esteem, optimism, primary and secondary control, and social support. Results were evaluated at baseline, post-intervention and 3-4 months post-intervention. The quality of implementation was also assessed. The StressLess intervention consists of 5 modules and is a 5-week self-directed intervention based on the principles of cognitive- behavioral therapy and delivered via a mobile app. Overall, the StressLess intervention demonstrated, that mHealth apps can contribute to the improvement of caregivers' health and well-being.
Baena, et al. [57], conducted a review of the available literature on networked family interventions, offering a new online family intervention format in which they incorporated some elements of the reviewed works. In the construction of their online intervention format, the authors involved family members. To this end, they developed a survey aimed at family members that probed the following themes:
Considering family preferences on the themes and contents to be addressed, the authors designed an online intervention program structured in 5 modules with a total of 16 sessions. The approximate total duration of the program is one year. The authors point out, that the aim of psychoeducation should not be “providing information” but “sharing information”, as Harvey (2018) indicated in her suggestive contribution. Subsequently, this same group of authors made two updates to their online family intervention format [58,59].
It is not possible to offer specific results or conclusions based on evidences. But after the narrative review conducted, if it is possible to point out some elements for future research:
The author declare that there is no conflict of interest and no links to sponsors. The work presented is original and has not been published elsewhere. The work does not provide any personal or identifying information. For this work, the approval of an ethics committee was not required.
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