Support group

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In a support group, members provide each other with various types of help, usually nonprofessional and nonmaterial, for a particular shared, usually burdensome, characteristic. Members with the same issues can come together for sharing coping strategies, to feel more empowered and for a sense of community. The help may take the form of providing and evaluating relevant information, relating personal experiences, listening to and accepting others' experiences, providing sympathetic understanding and establishing social networks. A support group may also work to inform the public or engage in advocacy.

Contents

History

Formal support groups may appear to be a modern phenomenon, but they supplement traditional fraternal organizations such as Freemasonry in some respects, and may build on certain supportive functions (formerly) carried out in (extended) families.

Other types of groups formed to support causes, including causes outside of themselves, are more often called advocacy groups , interest groups, lobby groups, pressure groups or promotional groups. Trade unions and many environmental groups, for example, are interest groups. The term support group in this article refers to peer-to-peer support.

Maintaining contact

Support groups maintain interpersonal contact among their members in a variety of ways. Traditionally, groups meet in person in sizes that allow conversational interaction. Support groups also maintain contact through printed newsletters, telephone chains, internet forums, and mailing lists. Some support groups are exclusively online (see below).

Membership in some support groups is formally controlled, with admission requirements and membership fees. Other groups are "open" and allow anyone to attend an advertised meeting, for example, or to participate in an online forum.

Management by peers or professionals

A self-help support group is fully organized and managed by its members, who are commonly volunteers and have personal experience in the subject of the group's focus. These groups may also be referred to as fellowships, peer support groups, lay organizations, mutual help groups, or mutual aid self-help groups. Most common are 12-step groups such as Alcoholics Anonymous and self-help groups for mental health.

Professionally operated support groups are facilitated by professionals who most often do not share the problem of the members, [1] [2] such as social workers, psychologists, or members of the clergy. The facilitator controls discussions and provides other managerial service. Such professionally operated groups are often found in institutional settings, including hospitals, drug-treatment centers and correctional facilities. These types of support group may run for a specified period of time, and an attendance fee is sometimes charged. [1]

Types

In the case of a disease, an identity or a pre-disposition, for example, a support group will provide information, act as a clearing-house for experiences, and may serve as a public relations voice for sufferers, other members, and their families. Groups for high IQ or LGBTQIA+ individuals, for example, differ in their inclusivity, but both connect people on the basis of identity or pre-disposition.[ citation needed ]

For more temporary concerns, such as bereavement or episodic medical conditions, a support group may veer more towards helping those involved to overcome or push through their condition/experience.

Some support groups and conditions for which such groups may be formed are:

Online support groups

Since at least 1982, the Internet has provided a venue for support groups. Discussing online self-help support groups as the precursor to e-therapy, Martha Ainsworth notes that "the enduring success of these groups has firmly established the potential of computer-mediated communication to enable discussion of sensitive personal issues." [3]

In one study of the effectiveness of online support groups among patients with head and neck cancer, longer participation in online support groups were found to result in a better health-related quality of life. [4]

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Gerald Ganglbauer's Parkins(on)line

Appropriate groups still difficult to find

A researcher from University College London says the lack of qualitative directories, and the fact that many support groups are not listed by search engines can make finding an appropriate group difficult. [5] Even so, he does say that the medical community needs "to understand the use of personal experiences rather than an evidence-based approach... these groups also impact on how individuals use information. They can help people learn how to find and use information: for example, users swap Web sites and discuss Web sites."

It is not difficult to find an online support group, but it is hard to find a good one. In the article What to Look for in Quality Online Support Groups, John M. Grohol gives tips for evaluating online groups and states: "In good online support groups, members stick around long after they've received the support they were seeking. They stay because they want to give others what they themselves found in the group. Psychologists call this high group cohesion, and it is the pinnacle of group achievement." [6]

Benefits and pitfalls

Several studies have shown the importance of the Internet in providing social support, particularly to groups with chronic health problems. [7] Especially in cases of uncommon ailments, a sense of community and understanding in spite of great geographical distances can be important, in addition to sharing of knowledge.

Online support groups, online communities for those affected by a common problem, give mutual support and provide information, two often inseparable features. They are, according to Henry Potts of University College London, "an overlooked resource for patients." Many studies have looked at the content of messages, while what matters is the effect that participation in the group has on the individual. Potts complains that research on these groups has lagged behind, particularly on the groups which are set up by the people with the problems, rather than by researchers and healthcare professionals. User-defined groups can share the sort of practical knowledge that healthcare professionals can overlook, and they also impact on how individuals find, interpret and use information. [5]

There are many benefits to online support groups that have been found through research studies. Although online support group users are not required to be anonymous, a study conducted by Baym (2010) finds that anonymity is beneficial to those who are lonely or anxious. This does not pertain to some people seeking support groups, because not all are lonely and/or anxious, but for those who are, online support groups are a great outlet where one can feel comfortable honestly expressing themselves because the other users do not know who they are.

A study was conducted by Walther and Boyd (2000) and they found a common trend to why people find online support groups appealing. First, the social distance between members online reduced embarrassment and they appreciated the greater range of expertise offered in the larger online social network. Next, they found that anonymity increased one's confidence in providing support to others and decreased embarrassment. The users of the social support websites were more comfortable being able to reread and edit their comments and discussion forum entries before sending them, and they have access to the website any time during the day. Each of these characteristics of online support groups are not offered when going to an in-person support group.

In a study conducted by Gunther Eysenbach, John Powell, Marina Englesakis, Carlos Rizo, and Anita Stern (2004), the researchers found it difficult to draw conclusions on the effectiveness of online peer-to-peer support groups. In online support groups, people must have the desire to support and help each other, and many times participants go on the sites in order to get help themselves or are limited to a certain subgroup.

An additional benefit to online support groups is that participation is asynchronous. This means that it is not necessary for all participants to be logged into the forum simultaneously in order to communicate. An experience or question can be posted and others can answer questions or comment on posts whenever they are logged in and have an appropriate response. This characteristic allows for participation and mass communication without having to worry about time constraints. Additionally, there are 24-hour chat rooms and spaces for focused conversation at all times of the day or night. This allows users to get the support they need whenever they need it, while remaining comfortable and, if they so wish, anonymous.

Mental health

Although there has been relatively little research on the effectiveness of online support groups in mental health, [8] there is some evidence that online support groups can be beneficial. [9] Large randomised controlled trials have both found positive effects [10] and failed to find positive effects. [8]

See also

Related Research Articles

Group psychotherapy or group therapy is a form of psychotherapy in which one or more therapists treat a small group of clients together as a group. The term can legitimately refer to any form of psychotherapy when delivered in a group format, including Art therapy, cognitive behavioral therapy or interpersonal therapy, but it is usually applied to psychodynamic group therapy where the group context and group process is explicitly utilized as a mechanism of change by developing, exploring and examining interpersonal relationships within the group.

Health On the Net Foundation

Health On the Net Foundation (HON) is a Geneva, Switzerland-based not-for-profit organization which promotes a code of conduct for websites providing health information and offers certificates to those in compliance.

eHealth is a relatively recent healthcare practice supported by electronic processes and communication, dating back to at least 1999. Usage of the term varies as it just not covers the "Internet medicine" as it was conceived during that time, but also covers "virtually everything related to computers and medicine". A study in 2005 found 51 unique definitions. Some argue that it is interchangeable with health informatics with a broad definition covering electronic/digital processes in health while others use it in the narrower sense of healthcare practice using the Internet. It can also include health applications and links on mobile phones, referred to as mHealth or m-Health.

A personal health record (PHR) is a health record where health data and other information related to the care of a patient is maintained by the patient. This stands in contrast to the more widely used electronic medical record, which is operated by institutions and contains data entered by clinicians to support insurance claims. The intention of a PHR is to provide a complete and accurate summary of an individual's medical history which is accessible online. The health data on a PHR might include patient-reported outcome data, lab results, and data from devices such as wireless electronic weighing scales or from a smartphone.

An e-patient is a health consumer who participates fully in his/her medical care, primarily by gathering information about medical conditions that impact them and their families, using the Internet and other digital tools. The term encompasses those who seek guidance for their own ailments and the friends and family members who go online on their behalf. E-patients report two effects of their health research: "better health information and services, and different, but not always better, relationships with their doctors."

Online health communities are online social networks related to health. They primarily provide a means for patients and their families to learn about illnesses, to seek and offer social support, and to connect with others in similar circumstances. These online groups can be composed of individuals with illnesses, groups of medical professionals with shared interests, non-professional caregivers and family of patients, or a combination. The term "online health community" is primarily academic jargon.

Health 2.0

"Health 2.0" is a term introduced in the mid-2000s, as the subset of health care technologies mirroring the wider Web 2.0 movement. It has been defined variously as including social media, user-generated content, and cloud-based and mobile technologies. Some Health 2.0 proponents see these technologies as empowering patients to have greater control over their own health care and diminishing medical paternalism. Critics of the technologies have expressed concerns about possible misinformation and violations of patient privacy.

PatientsLikeMe Health management social networking website

PatientsLikeMe is the world’s largest integrated community, health management, and real-world data platform. Through PatientsLikeMe, a growing community of more than 830,000 people with over 2,900 conditions share personal stories and information about their health, symptoms, and treatments, with a goal to improve the lives of all patients through knowledge derived from shared real-world experiences and outcomes. Data generated by patients themselves are systemically collected and quantified while also providing an environment for peer support and learning. These data capture the complex temporality and competing influences of different lifestyle choices, socio-demographics, conditions, and treatments on a person’s health. Everything members share empowers the community with personal agency, establishing PLM as a clinically robust resource with demonstrated impact, including more than 100 studies in peer-reviewed medical and scientific journals.

mHealth

mHealth is an abbreviation for mobile health, a term used for the practice of medicine and public health supported by mobile devices. The term is most commonly used in reference to using mobile communication devices, such as mobile phones, tablet computers and personal digital assistants (PDAs), and wearable devices such as smart watches, for health services, information, and data collection. The mHealth field has emerged as a sub-segment of eHealth, the use of information and communication technology (ICT), such as computers, mobile phones, communications satellite, patient monitors, etc., for health services and information. mHealth applications include the use of mobile devices in collecting community and clinical health data, delivery/sharing of healthcare information for practitioners, researchers and patients, real-time monitoring of patient vital signs, the direct provision of care as well as training and collaboration of health workers.

The use of electronic and communication technologies as a therapeutic aid to healthcare practices is commonly referred to as telemedicine or eHealth. The use of such technologies as a supplement to mainstream therapies for mental disorders is an emerging mental health treatment field which, it is argued, could improve the accessibility, effectiveness and affordability of mental health care. Mental health technologies used by professionals as an adjunct to mainstream clinical practices include email, SMS, virtual reality, computer programs, blogs, social networks, the telephone, video conferencing, computer games, instant messaging and podcasts.

Health 3.0 is a health-related extension of the concept of Web 3.0 whereby the users' interface with the data and information available on the web is personalized to optimize their experience. This is based on the concept of the Semantic Web, wherein websites' data is accessible for sorting in order to tailor the presentation of information based on user preferences. Health 3.0 will use such data access to enable individuals to better retrieve and contribute to personalized health-related information within networked electronic health records, and social networking resources.

Health blogs are niche blogs that cover health topics, events and/or related content of the health industry and the general community.

The online encyclopedia Wikipedia has, since the late 2000s, served as a popular source for health information for both laypersons and, in many cases, health care practitioners. Health-related articles on Wikipedia are popularly accessed as results from search engines, which frequently deliver links to Wikipedia articles. Independent assessments have been made of the number and demographics of people who seek health information on Wikipedia, the scope of health information on Wikipedia, and the quality of the information on Wikipedia.

Digital health, which includes digital care programs, is the convergence of digital technologies with health, healthcare, living, and society to enhance the efficiency of healthcare delivery to make medicine more personalized and precise. The discipline uses information and communication technologies to facilitate understanding of health problems and challenges faced by people receiving medical treatment.

Health information on the Internet

Health information on the Internet refers to all health-related information communicated through or available on the Internet.

Infodemiology, as defined by Gunther Eysenbach in the early 2000s, is an area of science research focused on scanning the internet for user-contributed health-related content, with the ultimate goal of improving public health. It is also defined as the science of mitigating public health problems resulting from an infodemic.

Digital therapeutics, a subset of digital health, are evidence-based therapeutic interventions driven by high quality software programs to prevent, manage, or treat a medical disorder or disease. Digital therapeutic companies should publish trial results inclusive of clinically meaningful outcomes in peer-reviewed journals. The treatment relies on behavioral and lifestyle changes usually spurred by a collection of digital impetuses. Because of the digital nature of the methodology, data can be collected and analyzed as both a progress report and a preventative measure. Treatments are being developed for the prevention and management of a wide variety of diseases and conditions, including type II diabetes, congestive heart failure, obesity, Alzheimer's disease, dementia, asthma, substance abuse, ADHD, hypertension, anxiety, depression, and several others. Digital therapeutics often employ strategies rooted in cognitive behavioral therapy.

Mobile ethnography is a qualitative research method that takes advantage of technology to document, analyze and derive implications of real-time customer experience. Therefore it’s often applied in the context of service design.

Participatory surveillance is community-based monitoring of other individuals. This term can be applied to both digital media studies and ecological field studies. In the realm of media studies, it refers to how users surveil each other using the internet. Either through the use of social media, search engines, and other web-based methods of tracking, an individual has the power to find information both freely or non freely given about the individual being searched. Issues of privacy emerge within this sphere of participatory surveillance, predominantly focused on how much information is available on the web that an individual does not consent to. More so, disease outbreak researchers can study social-media based patterns to decrease the time it takes to detect an outbreak, an emerging field of study called infodemiology. Within the realm of ecological fieldwork, participatory surveillance is used as an overarching term for the method in which indigenous and rural communities are used to gain greater accessibility to causes of disease outbreak. By using these communities, disease outbreak can be spotted earlier than through traditional means or healthcare institutions.

Internet-based treatments for trauma survivors

Internet-based treatments for trauma survivors is a growing class of online treatments that allow for an individual who has experienced trauma to seek and receive treatment without needing to attend psychotherapy in person. The progressive movement to online resources and the need for more accessible mental health services has given rise to the creation of online-based interventions aimed to help those who have experienced traumatic events. Cognitive behavioral therapy (CBT) has shown to be particularly effective in the treatment of trauma-related disorders and adapting CBT to an online format has been shown to be as effective as in-person CBT in the treatment of trauma. Due to its positive outcomes, CBT-based internet treatment options for trauma survivors has been an expanding field in both research and clinical settings.

References

  1. 1 2 APA Dictionary of Psychology, 1st ed., Gary R. VandenBos, ed., Washington: American Psychological Association, 2007.
  2. Rosenstein, D. & Yopp, J. (2018). The Group: Seven Widowed Fathers Reimagine Life. Oxford University Press. ISBN   978-0-190-64956-2.CS1 maint: multiple names: authors list (link)
  3. Ainsworth, Martha. "E-Therapy: History and Survey" . Retrieved 15 April 2008.
  4. Algtewi, Eamar; Owens, Janine; Baker, Sarah R. (17 April 2017). "Online support groups for head and neck cancer and health-related quality of life". Quality of Life Research. 26 (9): 2351–2362. doi:10.1007/s11136-017-1575-8. ISSN   0962-9343. PMC   5548849 . PMID   28417218.
  5. 1 2 Potts HW. "Online support groups: An overlooked resource for patients" (PDF). He@lth Information on the Internet. 44 (1): 6–8. Archived from the original (PDF) on 9 March 2006.
  6. Grohol, John M. (May 2004). "What to Look for in Quality Online Support Groups". Archived from the original on 14 January 2010. Retrieved 15 April 2008.
  7. Powell, John; Aileen Clarke (2002). "The WWW of the World Wide Web: Who, What, and Why?". Journal of Medical Internet Research. 4 (1): e4. doi:10.2196/jmir.4.1.e4. PMC   1761925 . PMID   11956036.
  8. 1 2 Dean, J; Potts, HWW; Barker, C (2016). "Direction to an Internet Support Group Compared With Online Expressive Writing for People With Depression And Anxiety: A Randomized Trial". JMIR Mental Health. 3 (2): e12. doi:10.2196/mental.5133. PMC   4887661 . PMID   27189142.
  9. Griffiths, KM; Calear, AL; Banfield, M (2009). "Systematic review on Internet Support Groups (ISGs) and depression (1): Do ISGs reduce depressive symptoms?". J Med Internet Res. 11 (3): e40. doi:10.2196/jmir.1270. PMC   2802256 . PMID   19793719.
  10. Griffiths, KM; Mackinnon, AJ; Crisp, DA; Christensen, H; Bennett, K; Farrer, L (2012). "The effectiveness of an online support group for members of the community with depression: a randomised controlled trial". PLoS One. 7 (12): e53244. Bibcode:2012PLoSO...753244G. doi:10.1371/journal.pone.0053244. PMC   3532446 . PMID   23285271.