Participation in online patient support groups endorses patients' empowerment

Objective

Although much has been expected of the empowering effect of taking part in online patient support groups, there is no direct evidence thus far for the effects of participation on patient empowerment. Hence our exploring to what extent patients feel empowered by their participation in online support groups, and which processes that occur in these groups are related to the empowering outcomes.

Methods

An online questionnaire was completed by 528 individuals who were active in online groups for patients with breast cancer, fibromyalgia and arthritis.

Results

The respondents felt empowered in several ways by their participation. The empowering outcomes that were experienced to the strongest degree were ‘being better informed’ and ‘enhanced social well-being’. No significant differences in empowering outcomes between diagnostic groups were found. The empowering outcomes could only be predicted in a modest way by the processes that took place in the online support groups.

Conclusion

This study indicates that participation in online support groups can make a valuable contribution to the empowerment of patients.

Practice implications

Health care providers should acquaint their patients with the existence of online support groups and with the benefits that participation in these groups can offer.     

Predictors of the change in the expression of emotional support within an online breast cancer support group: A longitudinal study

Objectives

To explore how the expression of emotional support in an online breast cancer support group changes over time, and what factors predict this pattern of change.

Methods

We conducted growth curve modeling with data collected from 192 participants in an online breast cancer support group within the Comprehensive Health Enhancement Support System (CHESS) during a 24-week intervention period.

Results

Individual expression of emotional support tends to increase over time for the first 12 weeks of the intervention, but then decrease slightly with time after that. In addition, we found that age, living situation, comfort level with computer and the Internet, coping strategies were important factors in predicting the changing pattern of expressing emotional support.

Conclusions

Expressing emotional support changed in a quadratic trajectory, with a range of factors predicting the changing pattern of expression.

Practical implications

These results can provide important information for e-health researchers and physicians in determining the benefits individuals can gain from participation in should CMSS groups as the purpose of cancer treatment.     

Social support and online postpartum depression discussion groups: a content analysis

Objective

Social support has a positive influence on women's childbearing experience and is shown to be a preventive factor in postpartum depression. This study examined the perceived value and types of social supports that characterize the discussions of women who participate in postpartum depression online discussion groups.

Methods

A directed content analysis was used to examine 512 messages posted on a postpartum depression online support group over six months.

Results

The majority of the women's postings illustrated emotional support followed by informational and instrumental support.

Conclusions

Online support groups provide women experiencing postpartum depression a safe place to connect with others and receive information, encouragement and hope.

Practice implications

Education strategies are needed to address the many questions regarding PPD medical treatment. Recommending vetted links to PPD online support groups will create opportunities for women to share their experiences and obtain support.     

Cognitive-behavioural interventions for mood and anxiety disorders in HIV: A systematic review

Background

Mood and anxiety disorders are highly prevalent and comorbid with HIV/AIDS. However, there is a paucity of research on the effectiveness of cognitive-behavioural interventions (CBI) for common mental disorders in HIV-infected adults. The present study sought to review the existing literature on the use of CBI for depression and anxiety in HIV-positive adults and to assess the effect size of these interventions.

Methods

We did duplicate searches of databases (from inception to 17–22 May 2012). The following online databases were searched: PubMed, The Cochrane Central Register of Controlled Trials and PsychArticles.

Results

We identified 20 studies suitable for inclusion. A total of 2886 participants were enroled in these studies, of which 2173 participants completed treatment. The present review of the literature suggests that CBI may be effective in the treatment of depression and anxiety in individuals living with HIV/AIDS. Significant reductions in depression and anxiety were reported in intervention studies that directly and indirectly targeted depression and/or anxiety. Effect sizes ranged from 0.02 to 1.02 for depression and 0.04 to 0.70 for anxiety.

Limitations

Some trials included an immediate postintervention assessment but no follow-up assessments of outcome. This omission makes it difficult to determine whether the intervention effects are sustainable over time.

Conclusion

The present review of the literature suggests that CBI may have a positive impact on the treatment of depression and anxiety in adults living with HIV/AIDS.     

Predicting cancer patients’ participation in support groups: A longitudinal study

Objective

Few patients participate in cancer support groups despite their benefits. This study investigated the importance of Theory of Planned Behaviour variables in predicting group participation, relative to disease impact, existing support, coping and demographic variables.

Methods

Longitudinal study of patients with colorectal, lung or prostate cancer recruited from a specialist oncology centre. Patients self-completed surveys at baseline and six-month follow up. Baseline measures included Theory of Planned Behaviour (TPB) variables, distress and control over cancer (IPQ-R), coping (Brief COPE), social support (MSPSS), health related quality of life (EORTC QLQ-C30) and readiness to participate (PAPM). Group participation and recommendations to participate were measured at follow up. Univariable and Random Forest analyses investigated predictors of baseline readiness to participate and participation by six-month follow up.

Results

N = 192 patients completed baseline questionnaires. N = 13 participated in a group and N = 59 did not by six-month follow up. Baseline readiness to participate was associated with inadequate support and positive views of support groups. Lower cognitive functioning, recommendations and readiness to participate predicted group participation by six-month follow up.

Conclusion and practice implications

Practitioners may facilitate group participation by promoting positive views of groups, recommending participation and focusing on patients experiencing greater disease impact and less existing support.     

Gender differences in computer-mediated communication: A systematic literature review of online health-related support groups

Objective

Previous research has contended that the unique characteristics of the Internet might remove some of the gender differences that exist in face-to-face healthcare. The aims of the present study were to systematically review studies that have examined gender differences in communication within online health communities.

Methods

A literature search was conducted to identify studies addressing gender differences in messages posted to online health-related support groups. Out of the 1186 articles identified, twelve were retrieved for review.

Results

Half of the studies examined gender differences by comparing male and female cancer discussion boards. The literature review revealed that some gender differences were observed in these studies. However, for studies that analysed mixed-gender communities, gender differences were less evident.

Conclusion

Results seemed to reveal gender differences in communications in single-sex online health support groups, and similarities in communication patterns in mixed-sex online health support groups. However, findings should be treated with caution due to the diversity in studies and methodological issues highlighted in the present review.

Practice implications

There is a need for health care professionals to take into account a range of situational and contextual factors that may affect how men and women use online health support groups. However, more robust research is needed before concrete guidelines can be developed to help health care professionals develop effective online support interventions.     

Lessons learned from an HIV adherence pilot study in the Deep South

Objective

Adherence to treatment for chronic illnesses, including HIV disease, is a complex process, and needs practical interventions in poorly resourced clinic settings.

Methods

This study tested the feasibility of an adherence intervention in 73 HIV-infected individuals in a Deep South public clinic based on Fisher & Fisher's Information-Motivation-Behavioral Skills Model.

Results

There was high baseline adherence and unexpectedly high clinic attrition, and 27% of the intervention group received less than one-quarter of the planned intervention contacts. Refill rate was the adherence measure that correlated best with HIV viral load and CD4 count, and there was poor use of electronic adherence monitoring (MEMS). Interviewed individuals expressed positive feelings about audio-supported computer-assisted survey instruments (ACASI) and the intervention support.

Conclusions

This process evaluation showed feasible study components in this population and setting. Lessons learned included: (1) clinic retention is an important part of adherence; (2) telephone interventions may need to add additional technology and flexibility to maximize dose; (3) ongoing fidelity monitoring is important with motivational interviewing; (4) refill rate was the most accurate adherence assessment; (5) MEMS was not well-accepted; (6) ACASI was easily used in this population; and (7) individuals appreciated adherence support from a consistent caring individual.     

Exploring online support spaces: using cluster analysis to examine breast cancer, diabetes and fibromyalgia support groups

Objective

This study sought to characterize and compare online discussion forums for three conditions: breast cancer, type 1 diabetes and fibromyalgia. Though there has been considerable work examining online support groups, few studies have considered differences in discussion content between health conditions. In addition, in contrast to the extant literature, this study sought to employ a semi-automated approach to examine health-related online communities.

Methods

Online discussion content for the three conditions was compiled, pre-processed, and clustered at the thread level using the bisecting k-means algorithm.

Results

Though the clusters for each condition differed, the clusters fell into a set of common categories: Generic, Support, Patient-Centered, Experiential Knowledge, Treatments/Procedures, Medications, and Condition Management.

Conclusion

The cluster analyses facilitate an increased understanding of various aspects of patient experience, including significant emotional and temporal aspects of the illness experience.

Practice implications

The clusters highlighted the changing nature of patients’ information needs. Information provided to patients should be tailored to address their needs at various points during their illness. In addition, cluster analysis may be integrated into online support groups or other types of online interventions to assist patients in finding information.     

Perceptions of couple HIV counseling and testing in Botswana: A stakeholder analysis

Objective

To explore stakeholder's perceptions of Couples HIV Counseling and Testing (CHCT) as opposed to individual testing and potential couples’ preferences for CHCT promotion and service provision.

Methods

Study was conducted as formative research for a phase III clinical trial of Herpes (HSV-2) suppression to prevent HIV transmission among HIV discordant couples. We used non-probability purposive sampling and snowballing techniques to identify study participants. Data were collected using key informant interviews and focus group discussions. Systematic textual data analysis was used. Two independent coders coded and compared their codes for agreement. Data was categorized by emerging themes.

Results

The general themes from both key informant interviews and focus group discussions were a preference for CHCT as opposed to individual counseling in HIV prevention and the need for a client-centered approach to promotion and provision of couple HIV testing services.

Conclusion

CHCT is important in HIV prevention and should be integrated in existing HIV testing programs. The study also demonstrates the challenges of HIV status disclosure and discordance among sexual partners who test as individuals.

Practice Implications

Current low HIV status disclosure rates imply that reducing HIV incidence rates will require integrating CHCT into current testing programs. Increasing CHCT uptake however, requires improving access, training providers and addressing social, cultural, political and logistical barriers.     

CD4 T-cell activation and reduced regulatory T-cell populations are associated with early development of cataracts among HIV-infected adults in Uganda

Background

Cataracts contribute 12% of visual loss among HIV-infected adults in Uganda. Immuno-pathogenesis of cataracts may differ among HIV-infected individuals; thus the need for innovative therapeutic interventions among HIV-infected adults.

Methods

In a laboratory based case-control study, nested in a clinical/surgical community outreach camp, 50 adults with cataracts eligible for surgery were selected consecutively. HIV testing was done for individuals with unknown HIV sero-status. Peripheral Blood Mononuclear Cells (PBMC) were collected from all HIV-positive-adults-with-cataracts (cases) and HIV-negative-adults-with-cataracts (comparative group) and age-matched HIV-negative and HIV-positive-adults-without-cataracts (comparative group). Treg were measured as CD3 + CD4 + FoxP3 + CD25+^Bright and immune activation as CD3 + CD4 + CD38 + HALDR+ using a Facs Canto II flowcytometer. Mann Whitney test was used to compare expression among the four groups.

Results

Of 50 adults operated for cataracts, 24 (48%) were female, 25 (50%) were HIV-positive. HIV-positive-individuals had cataracts earlier [median; Inter-quartile Range (IQR); 49 (44–53) years] than HIV-negative [70 (IQR 59–75) years]; p = 0.0005. Treg were lower among individuals with cataracts irrespective of HIV status; p = 0.001; but comparable among younger HIV-positive and elderly HIV-negative with cataracts; p = 0.301. Immune activation levels were comparable among HIV-positive and HIV-negative individuals with cataracts. However, HIV-positive-individuals with cataracts expressed higher levels of immune activation than HIV-positive-individuals without cataracts; p = 0.012 and HIV-negative-individuals-with-cataracts expressed higher levels of immune activation that HIV-negative-without-cataracts; p < 0.0001.

Conclusion

CD4 T-cell activation and reduced regulatory T-cell populations were associated with cataracts among adults aging with HIV. We recommend studies on clinical relevance of immune modulation in the prevention of early development of cataracts among adults aging with HIV in Africa.     

Outcomes of online support and resources for cancer survivors: a systematic literature review

Objective

This study aims to review systematically the available literature on health outcomes of online cancer support and resources.

Methods

We searched major databases with the following selection criteria: (1) empirical study on use of online support or resources by cancer survivors, (2) reporting effects or outcomes of online support or resources, (3) focusing on adult cancer survivors, and (4) peer-reviewed articles published by 2010.

Results

A total of 24 studies (37 articles) were included in the review. Most studies were focused on breast cancer survivors and had small sample sizes. Fifteen studies employed a cross-sectional design including eight qualitative studies. Only five studies used pre-post design, and four employed RCT design. The outcome measures have focused on psychosocial effects; most studies reported positive effects, although none of the RCT studies reported significant outcomes.

Conclusion

Existing studies of online cancer support and resources have demonstrated preliminary but inconclusive evidence for positive outcomes. We call for additional studies with rigorous study designs and the inclusion of more diverse participants and cancer conditions.

Practice implications

Connecting diverse cancer survivors to culturally appropriate, evidence-based online support and resources is a strategy to enhance health outcomes.     

The experience and impact of chronic disease peer support interventions: A qualitative synthesis

Objective

Our aim was to synthesise qualitative literature about the perceived impact and experience of participating in peer support interventions for individuals with chronic disease.

Methods

We carried out a meta-ethnography to synthesize 25 papers meeting specific inclusion criteria.

Results

Thirteen concepts were identified that reflected participants’ perceptions of the experience and impact of intervention participation. These were brought together in a conceptual model that highlighted both positive and negative perceptions, while also indicating if specific experiences and impacts had greater pertinence for mentors, mentees, or were mutually experienced.

Conclusion

Although peer support interventions may establish uneven power relationships between mentors and mentees, there is also potential for initially asymmetrical relationships to become more symmetrical over time. Our synthesis suggests that emotional support is particularly valued when delivered under conditions that do not merely reproduce biomedical hierarchies of power.

Practice implications

This synthesis suggests that those developing and implementing peer support interventions need to be sensitive to their potential negative effects. They will need to manage the tension between the hierarchical and egalitarian aspects of peer support interventions, and consider the impact on both mentors and mentees.     

Encouraging patients with depressive symptoms to seek care: A mixed methods approach to message development

Objective

To assess the message preferences of individuals affected by depression as part of a project that will evaluate interventions to encourage at-risk patients to talk to their physicians about depression.

Methods

Adaptive Conjoint Analysis (ACA) of 32 messages defined by 10 message attributes. Messages were developed based on input from three focus groups comprised of individuals with a personal and/or family history of depression, then tested using volunteers from an Internet health community. In an online conjoint survey, 249 respondents with depression rated their liking of the messages constructed for each attribute. They were then presented with two message sets and rated their preferences. Preference utilities were generated using hierarchical Bayes estimation.

Results

The optimal communication approach described both psychological and physical symptoms of depression, recognized multiple treatment options, offered lifetime prevalence data, noted that depression can affect anyone, and acknowledged that finding an effective treatment can take time.

Conclusion

Individuals with depression respond differently to depression care messages, underscoring the need for careful message development and evaluation.

Practice implications

ACA, used in conjunction with focus groups, is a promising approach for developing and testing messages in the formative research stage of intervention development.     

Further examination of the impact of patient participation on physicians' communication style

Objective

Previous research in primary care has shown that physicians are more informative and/or patient-centered when they interact with high participation patients (e.g., those who ask questions, express preferences and concerns). This study contributes to this literature by examining parents’ participation and physicians’ discourse in a pediatric surgery context.

Methods

The audiotapes of 7 pediatric surgeons and 68 of their patients’ parents/guardians were coded and examined for physicians’ information exchange and support utterances as they interacted with parents/guardians with varying degrees of participation.

Results

The results of a multilevel regression analysis showed, consistent with related research, that the same physicians were more informative overall and provided more information in response to parents’ questions when interacting with high participation parents. However, participation was not associated with physicians’ volunteered information, general explanations, or support utterances.

Discussion and conclusion

The results are discussed with respect to the impact of participation on physicians’ information provision and implications for future research, particularly with respect to general explanations, volunteered information, and medical context.

Practice implications

This study suggests that surgeons may provide more detailed information to patients who are active participants in the preoperative interview, thereby improving the adequacy and validity of informed consent for surgical procedures.     

Evaluation of the Dutch AIDS STI information helpline: differential outcomes of telephone versus online counseling

Objective

Health information helplines have an important function in health education, prevention and counseling. Information and help services are increasingly provided online. This study focuses on the differences and similarities between online help services and telephone services.

Methods

The telephone service of the Dutch AIDS STI helpline was compared to its e-mail equivalent. After consulting the helpline service, both callers and e-mailers (N_tot = 455) were asked to participate in a survey that evaluated their background characteristics, contacting reasons, and satisfaction with the specific service and information received. The survey also included questions regarding the advice received from the helpline. A follow-up measure 4 weeks after the baseline survey evaluated to what extent clients acted upon the advice.

Results

The study shows that both services are positively evaluated and are equally persuasive in their counseling. Differences between callers and e-mailers were found regarding background characteristics, content of the consultation, satisfaction, and the advice received.

Conclusion

It can be concluded that online health information services are an important addition to, but not a replacement for, the traditional telephone helplines.

Practice implications

In order to provide an optimal health service to a wide public, both online and telephone counseling should be offered.     

Examining why smokers do not want behavioral support with stopping smoking

Objective

This article delineates theory-based determinants of the low use of behavioral stop-smoking support with a view to inform interventions to address the low use.

Methods

Study 1 comprised interviews with 27 smokers recruited from a primary care centre in England. Study 2 used a nationwide sample of 212 smokers who completed a questionnaire informed by Study 1. Multiple regression and mediation analyses were used in Study 2 to discern the determinants of smokers’ motivation to use behavioral stop-smoking support.

Results

The best predictors of low motivation to use (a) group support, and (b) one-to-one support were expectations that stop-smoking support is ineffective at increasing chances of stopping smoking. In turn, expectations of ineffectiveness were predicted by expectations that both services provide insufficient support, as well as smokers’ low self-efficacy to use them. A negative image of those attending groups was another predictor of group support.

Conclusion

A substantial proportion of smokers hold expectations about stop-smoking support that are unlikely to facilitate motivation to use such support.

Practice implications

Intervention studies are now needed targeting such expectations.