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Cyberpsychology, Behavior and Social... Aug 2022We tested use of an online support group for women of color who had experienced stillbirth or early infant loss. We recruited recently bereaved mothers and asked them to...
We tested use of an online support group for women of color who had experienced stillbirth or early infant loss. We recruited recently bereaved mothers and asked them to participate in an existing online community for pregnancy and infant loss hosted on a commercial platform. Participants were asked to go online at least three times weekly for 6 weeks to read posts. Using a mixed-methods approach, we assessed attitudes toward online support, mental health, and experiences pre- and postintervention using written surveys and a brief phone interview. We used summary statistics for quantitative data and a deductive coding approach for qualitative data. Twenty participants completed the study. We found nonsignificant improvements in all four mental health domains (depression, post-traumatic stress disorder, moderate-severe generalized anxiety, and perinatal grief). Women reported the group allowed them to help others and feel less alone. They also reported that at times, posts could increase the intensity of their loss emotions. This study demonstrated feasibility to recruit, retain, and track participation in an online support group for perinatally-bereaved mothers of color. Although the study was not powered for outcome, all mental health measures showed nonsignificant improvements, suggesting value in further investigating online social support for improving women's mental health after perinatal loss. Registered on clinicaltrials.gov [NCT04600076], October 19, 2020.
Topics: Anxiety; Feasibility Studies; Female; Humans; Pregnancy; Self-Help Groups; Skin Pigmentation; Stillbirth
PubMed: 35861706
DOI: 10.1089/cyber.2021.0304 -
The Cochrane Database of Systematic... Mar 2017Survival rates for women with a diagnosis of breast cancer continue to improve. However, some women may experience physical, psychological and emotional effects post... (Review)
Review
BACKGROUND
Survival rates for women with a diagnosis of breast cancer continue to improve. However, some women may experience physical, psychological and emotional effects post diagnosis, throughout treatment and beyond. Support groups can provide opportunities for people to share their experiences and learn from others. As the number of online support groups increases, more and more women with breast cancer will likely access them.
OBJECTIVES
To assess effects of online support groups on the emotional distress, uncertainty, anxiety, depression and quality of life (QoL) of women with breast cancer.
SEARCH METHODS
We searched for trials in the Cochrane Breast Cancer Specialised Register, the Cochrane Central Register of Controlled Trials (CENTRAL; 2016, Issue 4), MEDLINE, Embase and PsycINFO on 2 May 2016, and we handsearched journals and reference lists. We also searched the World Health Organization's International Clinical Trials Registry Platform (WHO ICTRP) search portal and clinicaltrials.gov on 2 May 2016.
SELECTION CRITERIA
We included randomised controlled trials (RCTs) assessing effects of online support groups on women with a diagnosis of breast cancer and women who have completed breast cancer treatment. We included studies comparing online support groups with a usual care group, and studies comparing two or more types of online support groups (without a usual care group).
DATA COLLECTION AND ANALYSIS
Two review authors independently extracted data and assessed risk of bias. We presented outcome data using mean differences (MDs) and standardised mean differences (SMDs) along with 95% confidence intervals (CIs), and we used the fixed-effect model when appropriate. We assessed the quality of the body of evidence using the GRADE approach.
MAIN RESULTS
We included six studies (492 women) that assessed online support groups for women with breast cancer. Online support groups in these six trials lasted from six to 30 weeks. Women participated in these groups between 1.5 and 2.5 hours per week, and investigators conducted all studies in the USA. Participants were predominantly white and well educated and were moderate to high earners. Four studies compared an online support group versus a control group, and the other two compared a 'moderated' versus a 'peer-led' online support group, and a 'standard' versus an 'enhanced' online support group, respectively.None of the included studies measured 'emotional distress' or uncertainty. One study (78 women) for which data for analysis were missing reported no positive effects of online support on 'distress' and 'cancer-specific distress' versus support provided by a control group. Two studies measured anxiety: One study (72 women) found no difference in anxiety at the end of the intervention between the online support group and the control group (MD -0.40, 95% CI -6.42 to 5.62; low-quality evidence), and the second study (184 women) reported a reduction in anxiety levels at the end of the intervention when comparing the 'standard' support group (run by participants without prompting from health professionals) versus an 'enhanced' online support group (in which participants were specifically asked by the researcher to respond to one another's need for support).Five studies (414 women) measured depression. Three studies compared depression in the online support group with depression in the control group. Pooled data from two studies (120 women) showed a small to moderate reduction in depression in the online support group compared with control groups at the end of the intervention (SMD -0.37, 95% CI -0.75 to 0.00; very low-quality evidence). The third study, a pilot study (30 women), provided no data for analysis but reported no difference in depression between participants in support and control groups at the end of the intervention. Of the remaining two studies that measured depression, one study (60 women) provided no extractable data for comparison but reported no difference in depressive symptoms between a 'moderated' and a 'peer-led' support group; the other study (184 women) reported greater reduction in depression in the 'standard' support group than in the 'enhanced' online support group.Three studies measured quality of life. One pilot study (30 women) provided limited data for analysis but reported no change in quality of life at the end of the intervention. Only two studies (140 women) provided data for pooling and showed no positive effects on quality of life at four months post intervention compared with controls (SMD -0.11, 95% CI -0.47 to 0.24; very low-quality evidence). At 12 months post intervention, one study (78 women) reported that the intervention group did not attain better quality of life scores than the control group (MD -10.89, 95% CI -20.41 to -1.37; low-quality evidence).We found no data for subgroup analyses on stage of disease, treatment modality and types and doses of interventions. No studies measured adverse effects.
AUTHORS' CONCLUSIONS
This review did not find the evidence required to show whether participation in online support groups was beneficial for women with breast cancer, because identified trials were small and of low or very low quality. Large, rigorous trials with ethnically and economically diverse participants are needed to provide robust evidence regarding the psychosocial outcomes selected for this review.
Topics: Anxiety; Breast Neoplasms; Consumer Health Information; Depression; Female; Humans; Peer Group; Quality of Life; Randomized Controlled Trials as Topic; Self-Help Groups; Time Factors
PubMed: 28278559
DOI: 10.1002/14651858.CD011652.pub2 -
Schizophrenia Bulletin Nov 2015People with psychotic disorders frequently experience significant mental and social limitations that may result in persisting social isolation. Research has shown that a... (Review)
Review
People with psychotic disorders frequently experience significant mental and social limitations that may result in persisting social isolation. Research has shown that a supportive social environment is crucial for the process of personal recovery. Peer support groups can provide an opportunity to reduce isolation and enhance the process of personal recovery. It encourages people to express their thoughts, feelings, and personal concerns in a peer-to-peer learning environment. Although the importance of peer support groups for various chronic diseases is widely acknowledged, they do not generally form part of routine care for people with psychotic disorders. The evidence base is promising, but the field could benefit from more rigorous, pragmatic trials with follow-up measurements to establish a solid evidence-base. This article briefly reviews the literature and discusses the barriers to implementation of a peer-support learning environment in routine care, as well as ways to overcome these.
Topics: Humans; Peer Group; Psychotic Disorders; Self-Help Groups; Social Environment; Social Support
PubMed: 26297694
DOI: 10.1093/schbul/sbv113 -
Systematic Reviews Mar 2019Peer-led support groups play an important role in supporting people with chronic diseases. They may be particularly important for people with rare diseases who typically...
BACKGROUND
Peer-led support groups play an important role in supporting people with chronic diseases. They may be particularly important for people with rare diseases who typically do not have access to professional support options that focus on their disease-specific needs. Many peer-led support groups in rare diseases, however, are not sustained, and many patients do not have access to support groups. Training and education for peer support group leaders could address barriers to initiating and sustaining groups, but there is little evidence on the effectiveness of support group leader training programs. A previous systematic review evaluated the effects of training programs for peer leaders of support groups for people with medical illness on leader and support group outcomes, but it identified only one randomized controlled trial (RCT) that compared high- and low-resource training programs for cancer support group leaders. The trial did not find evidence that the high-resource program was more effective, but was limited by a small sample size and serious methodological limitations. To meet the needs of people living with the rare autoimmune connective tissue disease scleroderma, the Scleroderma Patient-centered Intervention Network has partnered with patient organizations to develop the Scleroderma Support group Leader EDucation Program, and a full-scale RCT to test the effectiveness of the program is planned. To verify the need for such a trial, we updated the previous systematic review.
UPDATED EVIDENCE
Review methods for the update were unchanged from the initial review. The updated database search yielded 1504 unique citations in addition to the 9757 assessed for eligibility in the previous review. All additional citations identified in the updated search were excluded at the title and abstract review stage.
CONCLUSIONS
Our systematic review update found that there is presently insufficient evidence on the effectiveness of training and support programs for peer leaders of disease-based support groups, highlighting the need for well-designed and rigorously conducted RCTs to examine the effects of training for peer leaders of support groups, especially in a rare disease context. The Scleroderma Patient-centered Intervention Network's trial of the Scleroderma Support group Leader EDucation Program will serve as such a trial.
SYSTEMATIC REVIEW REGISTRATION
PROSPERO CRD42018096369.
Topics: Education, Nonprofessional; Humans; Leadership; Peer Group; Randomized Controlled Trials as Topic; Scleroderma, Localized; Scleroderma, Systemic; Self-Help Groups
PubMed: 30836989
DOI: 10.1186/s13643-019-0981-0 -
Bulletin of the World Health... Jan 2023To assess treatment outcomes in tuberculosis patients participating in support group meetings in five districts of Karnataka and Telangana states in southern India.
OBJECTIVE
To assess treatment outcomes in tuberculosis patients participating in support group meetings in five districts of Karnataka and Telangana states in southern India.
METHODS
Tuberculosis patients from five selected districts who began treatment in 2019 were offered regular monthly support group meetings, with a focus on patients in urban slum areas with risk factors for adverse outcomes. We tracked the patients' participation in these meetings and extracted treatment outcomes from the Nikshay national tuberculosis database for the same patients in 2021. We compared treatment outcomes based on attendance of the support groups meetings.
FINDINGS
Of 30 706 tuberculosis patients who started treatment in 2019, 3651 (11.9%) attended support groups meetings. Of patients who attended at least one support meeting, 94.1% (3426/3639) had successful treatment outcomes versus 88.2% (23 745/26 922) of patients who did not attend meetings (adjusted odds ratio, aOR: 2.44; 95% confidence interval, CI: 2.10-2.82). The odds of successful treatment outcomes were higher in meeting participants than non-participants for all variables examined including: age ≥ 60 years (aOR: 3.19; 95% CI: 2.26-4.51); female sex (aOR: 3.33; 95% CI: 2.46-4.50); diabetes comorbidity (aOR: 3.03; 95% CI: 1.91-4.81); human immunodeficiency virus infection (aOR: 3.73; 95% CI: 1.76-7.93); tuberculosis retreatment (aOR: 1.69; 1.22-2.33); and drug-resistant tuberculosis (aOR: 1.93; 95% CI: 1.21-3.09).
CONCLUSION
Participation in support groups for tuberculosis patients was significantly associated with successful tuberculosis treatment outcomes, especially among high-risk groups. Expanding access to support groups could improve tuberculosis treatment outcomes at the population level.
Topics: Humans; Female; Middle Aged; India; Tuberculosis; Treatment Outcome; Risk Factors; Self-Help Groups
PubMed: 36593787
DOI: 10.2471/BLT.22.288237 -
Health Informatics Journal Sep 2020The purpose of this study was to investigate the nature and effects of exchanging emotional support via a smartphone-based support group for patients with alcohol...
The purpose of this study was to investigate the nature and effects of exchanging emotional support via a smartphone-based support group for patients with alcohol dependence. Of the 349 patients who met the (4th ed.) criteria for alcohol dependence, 153 patients participated in the discussion group within the Addiction-Comprehensive Health Enhancement Support System, a smartphone application aimed at reducing relapse. This was developed to prevent problem drinking by offering individuals in recovery for alcohol dependence automated 24/7 recovery support services and frequent assessment of their symptom status as part of their addiction care. The results showed that receiving emotional support from health care providers improved coping self-efficacy. Giving emotional support and receiving emotional support from health care providers acted as a buffer, protecting patients from the harmful effects of emotional distress on risky drinking. Clinicians and researchers should use the features of smartphone-based support groups to reach out to alcoholic patients in need and encourage them to participate in the exchange of emotional support with others.
Topics: Adaptation, Psychological; Alcoholism; Humans; Self Efficacy; Self-Help Groups; Smartphone
PubMed: 31814490
DOI: 10.1177/1460458219888403 -
Qualitative Health Research Aug 2023Little is known regarding the nuanced experiences of family carers for people living with rare dementias (PLWRD), with no known literature exploring their positive...
Little is known regarding the nuanced experiences of family carers for people living with rare dementias (PLWRD), with no known literature exploring their positive experiences of caring discussed within peer support group settings. This article explores family carers of PLWRD's positive experiences reported in video conferencing peer support groups. Six peer support group sessions involving a total of nine participants were qualitatively analysed using thematic analysis, guided by the conceptual framework of positive aspects of caring (CFPAC) (Carbonneau et al., 2010). Six themes were identified: (1) Protecting, maintaining, enjoying and finding strength in their relationship with the PLWRD; (2) Using tools and resources in response to challenges; (3) Positive impact of interactions and others' responses to the dementia; (4) Overcoming barriers to taking a break while maintaining their wellbeing, (5) Maintaining positive outlooks and showing psychological resilience in adversity; and (6) Attributing meaning to the caring role. This article highlights family carers of PLWRD's positive psychological, physical and social resources, balanced against the challenges of caring and maintaining their wellbeing, and identifies ways of promoting family carers' positive caring experiences and resources within healthcare and supportive settings.
Topics: Humans; Caregivers; Social Support; Dementia; Self-Help Groups; Counseling; Qualitative Research; Family
PubMed: 37395095
DOI: 10.1177/10497323231172880 -
Journal of Community Psychology Mar 2022Breast cancer patients are primary users of Internet Health Forums, virtual self-help communities where they find and share information, preoccupations, and support....
Breast cancer patients are primary users of Internet Health Forums, virtual self-help communities where they find and share information, preoccupations, and support. Previous literature has mainly focused on analysing the contents and the outcomes of breast cancer forums' participation. In light of the Community of Practice theoretical model, our research investigated the psychosocial processes that build and shape patients' experience and participation in the forum. We conducted 16 semi-structured email interviews with breast cancer patients recruited within a well-established online community. Thematic analysis identified five processes-mirroring, monitoring, modelling, belonging, and distancing-that marked three phases of users' experience: initiation, participation, detachment. An interactive dynamic characterised the identified processes: the disease's experience was shaped by and, in turn, it crafted this virtual community. These community processes contributed to participants' empowerment at practical, informative, and emotional levels through the development of a shared repertoire of resources, stories, and ways of dealing with patients' recurring problems.
Topics: Breast Neoplasms; Emotions; Empowerment; Female; Health Services; Humans; Self-Help Groups
PubMed: 34428308
DOI: 10.1002/jcop.22696 -
South African Family Practice :... Dec 2023Terminating a pregnancy can be a traumatic life event, resulting in negative emotions that can diminish women's self-worth. Support from different sources, including...
BACKGROUND
Terminating a pregnancy can be a traumatic life event, resulting in negative emotions that can diminish women's self-worth. Support from different sources, including health support groups, could be beneficial in restoring a woman's self-worth. This article aimed to present findings on the impact of a support group intervention on the self-worth of women who terminated a pregnancy in adolescence.
METHODS
A qualitative, exploratory and descriptive approach, using in-depth, semi-structured interviews, was used to collect data. Thematic analysis guided the data analysis.
RESULTS
Five themes emerged from the data: reasons for joining the support group; enhanced emotional and physical wellbeing; self-forgiveness; spiritual growth and participants' voices.
CONCLUSION
Participants described why they needed to join the support group. It became clear that the intercession was effective in the short term as it enhanced participants' self-worth by encouraging them to accept themselves thereby altering their self-condemning emotions, replacing them with self-love.Contribution: The study recommends that a support group should be considered as a backup for women who terminated a pregnancy and have lost their self-worth.
Topics: Adolescent; Pregnancy; Female; Humans; Pregnancy in Adolescence; Health Services; Data Analysis; Death; Self-Help Groups
PubMed: 38197692
DOI: 10.4102/safp.v65i1.5707 -
Reproductive Health Jun 2015Women living with HIV/AIDS, in particular, have been positioned as a latent source of infection, and have captivated culpability and blame leading to a highly... (Review)
Review
BACKGROUND AND OBJECTIVES
Women living with HIV/AIDS, in particular, have been positioned as a latent source of infection, and have captivated culpability and blame leading to a highly stigmatised and discriminated life. Despite the situation, women and their particular concerns have largely been ignored in HIV/AIDS research literature. This review aims to examine and analyze the feelings, experiences and perceptions of Women living with HIV/AIDS (WLHA) and will also access the role of support group as a coping strategy on the basis of 7 primary researches conducted in or on different parts of the world.
METHODOLOGY
A systematic literature search was carried out on major data bases ASSIA, CINAHL, Science Direct, Web of Knowledge, Wiley Inter Science, AMED, Pub Med/Bio Med Central, MEDLINE and Cochrane Library. The articles included for review purpose were gauged against the pre-defined inclusion/exclusion criteria and quality assessment checklist resulting in a final 7 papers.
FINDINGS/RESULTS
The findings were compiled into five thematic areas: (1) Disclosure as a sensitive issue; (2) Stigma and Discrimination associated with HIV/AIDS and the multidimensional effects on women's health and wellbeing; (3) Internalised Stigma; (4) Women living with HIV/AIDS experiences of being rejected, shunned and treated differently by physicians, family and close friends; (5) Support Group as among the best available interventions for stigma and discrimination.
CONCLUSION
Support groups should be offered as a fundamental part of HIV/AIDS services and should be advocated as an effective and useful intervention. Further research is needed to examine the effect of support groups for women living with HIV/AIDS. A community based randomised controlled trial with support group as an intervention and a control group could provide further evidence of the value of support groups.
Topics: Acquired Immunodeficiency Syndrome; Adaptation, Psychological; Female; HIV Infections; Humans; Self-Help Groups; Social Discrimination; Social Stigma; Stress, Psychological; Women's Health
PubMed: 26032304
DOI: 10.1186/s12978-015-0032-9