Learning Objectives
By the end of this section, you will be able to:
- Explain the development of user groups
- List online communities and support groups for clients and families
- Select credible databases from nursing forums and professional organizations
- Understand the use of informatics and technology innovation in nursing practice
In mental health care, user groups refer to structured gatherings of individuals who share common experiences related to mental health issues. Such groups are often organized around specific conditions, such as depression, anxiety, bipolar disorder, or schizophrenia. These groups commonly include people living with mental health conditions, their families, and sometimes mental health professionals.
User groups are vital in providing peer support, a critical component of comprehensive mental health care. They offer an environment where individuals can share personal experiences and coping strategies and offer mutual encouragement. The peer-led approach can help destigmatize mental health and empower individuals to participate in their care actively. Moreover, users can contribute to service design and policy formulation within each given group. Including user perspectives helps ensure that mental health services are responsive to the needs of the people they serve (Fortuna et al., 2022).
The Development of User Groups
The development of user groups in mental health care has evolved over several decades, with roots in the broader mental health recovery movement. Beginning in the 1970s and 1980s, a time of deinstitutionalization, those with lived experience of mental illness began to challenge the dominant medical model of mental health care, advocating for greater control and participation in their treatment (Davidson, 2016). By the 1990s, these advocacy efforts crystallized into the formation of organized user groups. These groups, typically composed of individuals living with mental health conditions, began to play a more active role in care and in development of mental health policy. They demanded a shift from paternalistic models of care to more collaborative, person-centered approaches (Davidson, 2016).
Over time, user groups have significantly influenced the shape and content of mental health-care services. Their advocacy has led to increased recognition of the value of peer support and the incorporation of recovery-oriented practices into mainstream mental health care. These practices emphasize individual strengths, self-determination, and the potential for recovery, even in serious mental illness (Substance Abuse and Mental Health Services Administration [SAMHSA], 2021).
Anti-psychiatry sentiment has likely been instrumental in the development and proliferation of advocacy groups and peer support networks. These organizations work to protect the rights of mental health clients, challenge stigma, and promote alternatives to conventional psychiatric treatments. They provide platforms for individuals to share their experiences, offer mutual support, and collectively advocate for changes in mental health policy and practice (Castillo et al., 2019). An example of a platform is the Hearing Voices Network, which emphasizes self-determination and critiques the overreliance on medication and involuntary treatments in mental health care (Higgs, 2020).
In the twenty-first century, user groups have significantly evolved, adapting to the digital age with innovative approaches to gathering, sharing, and utilizing health information. This transformation is largely attributed to advancements in technology, which have expanded the reach of these groups and enhanced their ability to access digital health information. User groups, including clients, health-care professionals, and students, now rely on a wide array of digital tools, such as health apps, online forums, social media platforms, and electronic health records (EHRs), to facilitate communication, support, education, and the management of health information (Vos et al., 2020). These digital platforms have fostered an environment of collaboration and peer support, enabling individuals to share experiences, seek advice, and gain insights into various health issues. Online platforms and forms of social media have further facilitated the creation of virtual user groups, allowing individuals from diverse locations to share experiences, provide mutual support, and advocate for change in mental health care (Naslund et al., 2016). The rapid adoption of digital health information technologies does, however, raise concerns regarding data privacy, security, quality and reliability, and the digital divide, indicating a need for ongoing evaluation and regulation to ensure equitable access and protection of user data (Mumtaz et al., 2023).
The Need for User Groups
User groups in mental health care play a crucial role in supporting individuals experiencing mental health issues and shaping the direction of mental health services. These groups are important from various perspectives. From an individual perspective, user groups provide an essential platform for peer support, allowing individuals to share personal experiences, coping strategies, and receive mutual and empathetic understanding from others who have similar experiences (Naslund et al., 2016). Studies have shown that participation in user groups can lead to improved self-esteem, enhanced coping skills, and reduced symptoms of mental distress (Shalaby & Agyapong, 2020).
From a community perspective, user groups can play a crucial role in reducing the stigma associated with mental health disorders by promoting awareness and understanding. They offer a collective voice that can challenge misconceptions and discriminatory practices (Naslund et al., 2016).
From a systems perspective, user groups can contribute to service design and policy development. They provide invaluable insights based on lived experiences that can help tailor services better to meet the needs of those with mental health conditions. User groups have driven a more recovery-oriented approach to mental health care, prioritizing individual strengths and self-determination (Fortuna et al., 2022).
The International Dimension of Users Groups
The importance and impact of user groups in mental health care extends beyond national borders. Globally, the recovery and peer support movements have influenced mental health-care systems, emphasizing the importance of lived experience in developing effective treatments and policies (Sunkel & Sartor, 2022). These groups contribute to mental health policy development, often supported by international organizations, such as the World Health Organization (WHO) (Semrau et al., 2019). The World Federation for Mental Health has advocated for and facilitated the formation of user groups, emphasizing their importance in achieving human rights-based approaches to mental health.
The advent of digital technology has further internationalized user groups, enabling the formation of online communities that cross geographic boundaries. This development has been particularly valuable for individuals in regions where mental health services are limited or stigmatized (Naslund et al., 2017). In many low- and middle-income countries, user groups have played a crucial role in filling these mental health service provision gaps, offering peer support and advocacy in environments often plagued by limited resources and stigma.
Despite this progress, challenges remain. Ensuring that diverse voices within user groups are heard, combating stigma, and securing sustainable funding are ongoing international concerns (Semrau et al., 2019).
Online Resources for Users
Digital technology has facilitated the emergence of many online resources for user groups in mental health care. These platforms provide virtual spaces for individuals to connect with others, share experiences, and access support, often overcoming geographical boundaries and time constraints inherent in traditional, face-to-face groups (Strand et al., 2020). For example, the National Alliance on Mental Illness (NAMI) offers numerous online community resources, including discussion groups and educational programs, catering to individuals with mental health conditions and their families (NAMI, 2023). Similarly, Mental Health America (MHA) has developed online resources, including screening tools, information about mental health conditions, and a platform connecting individuals to peer communities and professional assistance (MHA, 2023).
Local support groups can also be found on these sites:
- Mental Health America
- Anxiety and Depression Association of America
- Depression and Bipolar Support Alliance
Online therapy platforms allow users to connect with licensed mental health professionals and provide the option to join group therapy sessions online (Markowitz et al., 2020). Mobile applications facilitate peer support and may provide self-help guides on various mental health topics (Alqahtani et al., 2021). The application of chatbots, or artificial intelligence (AI)-powered conversational agents in mental health care, has rapidly increased in recent years. These digital tools have the potential to provide widespread, cost-effective, and personalized mental health support. Chatbots can be programmed to deliver CBT techniques, which are recognized as effective for treating various mental health conditions, including anxiety and depression (Haque & Rubya, 2023). For example, a chatbot developed by researchers at Stanford University utilizes CBT strategies to help users manage their mental health (Fitzpatrick et al., 2017). Chatbots can be available 24/7, reducing barriers related to therapists’ availability, wait times, and cost. This makes mental health care more accessible to those who may not otherwise seek or be able to afford traditional therapy services (Vaidyam et al., 2019). It is essential to recognize the limitations and potential risks of using chatbots in mental health care though. For instance, they may lack the ability to understand complex human emotions fully, fail to detect a crisis, or misinterpret the user’s input. Therefore, these services should be viewed as a supplement to, not a replacement for, professional mental health services (Haque & Rubya, 2023). And while all of these online resources increase accessibility, it is important to be mindful of their challenges, such as concerns about privacy, variable quality of treatment and information, and the lack of in-person interaction (Naslund et al., 2017).
Life-Stage Context
Digital Resources for Mental Health Care
Different life stages can significantly differ in their use and effectiveness of digital resources for mental health care:
- Children and adolescents: Younger individuals may be more comfortable with technology, given their digital nativity. Resources for this group should be designed with age-appropriate language and features. Parental consent, monitoring, and adherence to child data protection regulations are crucial considerations (Hollis et al., 2017).
- Adults: Adults may have varying degrees of comfort with technology depending on their exposure and experience. Digital resources providing internet interventions (therapies delivered via web-based services) can be flexible and adapted to suit their lifestyles and responsibilities (Andersson et al., 2019).
- Older adults: Seniors may face challenges using digital resources due to less familiarity with technology or physical limitations (e.g., visual impairment). Extra support in learning to use digital resources or adaptations to make them more accessible can help (Dong et al., 2023).
Credible Databases
Several credible databases offer valuable information for clinicians, researchers, clients, and caregivers concerning mental illness:
- PubMed, a U.S. National Library of Medicine service, contains more than thirty million citations for biomedical literature from MEDLINE, life science journals, and online books. It is a crucial resource for clinical research in all areas of medicine, including mental health (National Library of Medicine, 2021).
- The Cochrane Library is a reputable database that provides high-quality, independent evidence for health-care decision-making. It includes the Cochrane Database of Systematic Reviews, which offers systematic reviews on various health-related topics, including mental health interventions (The Cochrane Collaboration, 2021).
- The American Psychological Association (APA) is a definitive source for psychology and mental health topics. The database contains access to articles, podcasts, books, and more.
- The National Institute of Mental Health (NIMH) and National Alliance on Mental Illness (NAMI) websites provide a wealth of information on various mental health conditions and ongoing research, making them valuable resources for professionals and the general public.
Cultural Context
Cultural Considerations in Digital Resources
Cultural considerations are essential to ensure digital mental health resources are accessible, relevant, and effective across diverse populations.
- Language: Digital resources should be available in the languages spoken by the target population. Additionally, the content should be sensitive to cultural nuances in language use (Maar et al., 2017).
- Cultural relevance: Consider cultural beliefs and practices regarding mental health when designing, recommending, and delivering digital resources. This might involve integrating culturally specific coping strategies or acknowledging cultural stigma around mental health.
- Socioeconomic factors: The availability of reliable internet and technological devices can vary across cultures and economic contexts. Digital resource strategies must consider these disparities to avoid exacerbating health inequities (Maar et al., 2017).
Nursing Informatics
The integration of nursing science, computer science, and information science to manage and communicate data, or nursing informatics, has an increasing role in mental health care. Digital tools can streamline client information, track treatment outcomes, enhance communication among health-care professionals, and improve client care (Edgcomb et al., 2022). Electronic health records (EHRs) are a prime example, enabling more coordinated and client-centered care by making comprehensive health information available to all health-care professionals involved in a client’s care. For mental health nursing, EHRs can facilitate monitoring symptom progression and treatment response over time, helping to tailor interventions to individual client needs (Kariotis et al., 2022).
Health informatics is a professional specialty in nursing (American Nurses Association [ANA], 2022) and in medicine (Edgcomb, 2021). Use of health informatics can support analysis of population health and health risks and, due to capture of real-time data along with reimbursement information, can assist development of practice guidelines (Edgcomb, 2021). From a psychiatric-mental health (PMH) nursing perspective, health informatics can reduce communication errors, systematize nursing tasks to free nurses for more client contact, and provide ready access to research evidence for best practice. Equally relevant to PMH nursing, informatics can help create learning systems for clients and communities, and optimize technology for all users (ANA, 2022).
The nursing profession must adapt to the digital future through a multifaceted approach that encompasses education, practice, and policy to effectively meet the evolving demands of health-care delivery and client care. Nursing education should integrate digital literacy and informatics competencies into curricula to prepare nurses for the proficient use of EHRs, telehealth technologies, and digital health applications. This includes training in data management, cybersecurity, and the ethical implications of digital health to ensure that nurses are equipped to protect client privacy and data integrity (Booth et al., 2021).
In clinical practice, nurses should embrace and advocate for the use of digital tools that enhance client care, such as remote monitoring devices, mobile health apps, and virtual care platforms, to improve access to care, client engagement, and health outcomes. Mobile health (mHealth) applications offer the potential for remote client monitoring, facilitating medication adherence, and providing psychoeducational materials (Firth et al., 2017). Furthermore, nurses should play an active role in the development and evaluation of digital health technologies to ensure they meet clinical needs and enhance the quality of care (Booth et al., 2021).
Nursing leadership should advocate for policies that support the integration of digital health technologies in health-care settings, address the digital divide, and ensure equitable access to digital health resources for all clients (Booth et al., 2021). Additionally, ongoing professional development opportunities in digital health should be made available to nurses to keep pace with technological advancements and evolving health-care practices (Altmiller & Pepe, 2022).
Integrating nursing informatics in mental health care comes with challenges despite its potential. Data privacy, the need for training among health-care professionals, and the digital divide among clients need focus in order to effectively leverage the benefits of nursing informatics in mental health care (Kariotis et al., 2022). The digital divide in health care refers to the gap between individuals who have access to digital health technologies and the internet, and those who do not, due to various socioeconomic, geographic, demographic, or cultural factors. This divide not only encompasses access to hardware, such as computers and smartphones, but also includes differences in the ability to use these technologies effectively to manage health information, communicate with health-care providers, and make informed health decisions (Saeed & Masters, 2021).
Several factors contribute to the digital divide in health care. Economic disparities play a significant role, as individuals from lower socioeconomic backgrounds may not be able to afford the cost of digital devices or internet services. Geographic location is another critical factor, with rural and remote areas often facing limited access to high-speed internet and digital health services. Age and education also influence digital literacy, with older adults and those with lower levels of education less likely to engage with digital health technologies (Saeed & Masters, 2021).
The digital divide has significant implications for health equity, as it can exacerbate disparities in health access and outcomes. Individuals who are digitally disenfranchised may have less access to timely health information, online appointment scheduling, telehealth services, and electronic health records, potentially leading to delays in care, reduced client engagement, and poorer health outcomes (Turcios, 2023).
Efforts to bridge the digital divide in health care focus on improving access to affordable high-speed internet and digital devices, enhancing digital literacy through education and training programs, and developing inclusive technologies and services that are accessible and usable by diverse populations. The introduction of the Affordable Connectivity Program (ACP) reflects a growing recognition of the internet as a vital utility, akin to water and electricity, and an essential step toward digital equity. ACP is a federal initiative designed to help ensure that households can afford the broadband they need for work, school, health care, and other essential services. It represents a continuation and expansion of the temporary Emergency Broadband Benefit (EBB) program that was established to provide internet access to low-income families during the COVID-19 pandemic. Under ACP, eligible households can receive a discount on broadband service and connected devices. This includes a monthly discount on broadband service and a one-time discount for the purchase of a laptop, desktop computer, or tablet from participating providers. Eligibility for the program is based on household income or participation in other government assistance programs such as the Supplemental Nutrition Assistance Program (SNAP), Medicaid, Federal Public Housing Assistance, SSI, WIC, or Lifeline, among others (Federal Communications Commission [FCC], 2021). The ACP aims to not only provide immediate financial relief to help cover the cost of broadband services, but to also foster long-term solutions for bridging the digital divide. By making internet access more affordable, the program seeks to enhance opportunities for education, health-care access, employment, and social inclusion for underserved and marginalized communities (FCC, 2021).
Assisting clients in accessing user groups and digital resources for mental health care can significantly enhance their care and recovery. Health-care providers, including mental health professionals and nurses, are key in this process. Nurses can identify and recommend relevant user groups and digital resources tailored to clients’ needs. By regularly compiling and updating information on local and online user groups, professionals can provide current and relevant resources to clients (Naslund et al., 2017).
In addition, clinicians can support clients in using these resources. For instance, they can provide guidance on how to navigate online platforms, discern reliable information, and engage safely and effectively with online communities. Clinicians can also help clients integrate the support and strategies they gain from these resources into their overall treatment plan (Firth et al., 2017). Health-care systems can also facilitate access by offering clients digital literacy training and integrating user groups and digital resources into standard care. This could involve workshops, individual training sessions, or regularly providing clients with informational materials, such as brochures or website tutorials (Campanozzi et al., 2023). Collaboration with user groups can further enhance access. Regular communication between mental health professionals and user groups can help maintain a reciprocal relationship where both parties learn from each other, ultimately benefiting the client’s care (Kwame & Petrucka, 2021).
Link to Learning
Mental Health America offers support groups through an online community to assist individuals, families, and health-care consumers.