Paula Klemm

Online cancer support groups: a review of the research literature.

This article explores current research on online cancer support groups. A review of the literature revealed 9 research articles (describing 10 research studies) that focused on computer-mediated or Internet cancer support groups. The researchers in 9 of the 10 studies concluded that online cancer support groups helped people cope more effectively with their disease. Most of the research studies had small sample sizes. Six of the 10 studies did not include men, and six focused on Caucasian women with breast cancer. Information seeking/giving was prevalent in the online groups. Gender differences, negative psychological effects, and barriers to using online groups were identified. The few studies that were found in the literature suffered from a lack of experimental design, small and homogenous samples, and lack of outcome measures, thereby limiting applicability of results.

Depression in Internet and face-to-face cancer support groups: a pilot study.

PURPOSE/OBJECTIVES To examine depression in Internet cancer support groups as compared to traditional (face-to-face) cancer support groups and to explore the relationship between Internet use and levels of depression. DESIGN Exploratory, descriptive. SETTING Traditional (face-to-face) and Internet cancer support groups. SAMPLE Convenience sample of 40 patients with cancer, 14 from traditional face-to-face groups and 26 from an Internet support group, with different cancer diagnoses. METHODS Traditional paper or Internet surveys consisting of an investigator-developed questionnaire including demographic information, brief medical history, support group history, and the Center for Epidemiologic Studies Depression Scale (CES-D). MAIN RESEARCH VARIABLE Depression scores on the CES-D. FINDINGS Participants in the face-to-face groups were 100% male. The online group was 56% male and 44% female. Groups did not differ significantly by income, health insurance status, or days since initial diagnosis. Groups differed significantly on level of depression. The traditional (face-to-face) group had a CES-D mean score of 1.86 (SD = 2.69), and the online group had a mean score of 29.27 (SD = 11.89, p less than 0.000). A comparison of CES-D scores of men in the face-to-face and Internet groups revealed that they differed significantly on level of depression. Men in the traditional group had a mean score of 1.86 (SD = 2.69), and men in the online group had a mean score of 27.42 (SD = 112.69, p less than 0.000). CONCLUSIONS These data suggest that more depressed patients with cancer use Internet support groups instead of face-to-face support. Before online interventions can be implemented effectively, their efficacy needs to be evaluated. IMPLICATIONS FOR NURSING Patients with cancer are at increased risk for developing depression. This should be a consideration during nursing assessments. Traditional cancer support groups can help people cope with their cancer, but the efficacy of Internet cancer support groups in providing psychoeducation and psychotherapeutic intervention remains to be proven.

Cancer caregivers online: hope, emotional roller coaster, and physical/emotional/psychological responses.

The demands placed on cancer caregivers are well documented. Support for informal caregivers has been shown to increase hope and decrease psychosocial morbidity. The Internet is a readily available means of support for cancer caregivers, however little research on online support for informal caregivers of cancer patients exists. Descriptive statistics and qualitative analysis were used to evaluate messages posted over a 2-month period on an online cancer caregiver listserv. Three major themes emerged from the data: hope, emotional roller coaster, and physical/emotional/psychological responses. Supportive and hopeful statements prevailed among online participants in the current study. However, subjects also described the emotional roller coaster associated with caregiving. Emotional/physical/psychological responses included anger, weakness, exhaustion, grief, and sadness. Outcome research is needed to help evaluate the efficacy of online support for caregivers. Findings in this study can help nurses focus on some problems common to caregivers of cancer patients and plan appropriate interventions and research.

Effects of online support group format (moderated vs peer-led) on depressive symptoms and extent of participation in women with breast cancer.

The purposes of this study were to evaluate the effects of different formats of online group support (moderated vs peer-led) on depressive symptoms and extent of participation in women with breast cancer. A randomized longitudinal design was used to address the study aims. The setting was a secure password-protected Web page. Fifty women with breast cancer, at least 21 years old, who had Internet access participated. Subjects were randomly assigned to moderated or peer-led groups, given a password, and instructed to complete the study questionnaires at baseline and again at 6, 12, and 16 weeks. The independent variables were types of online support (moderated or peer-led), and the dependent variables were depressive symptoms and extent of participation. There were no significant differences in depressive symptoms by group or by extent of group participation. Moderated groups read and posted significantly more messages than did peer-led groups. This study adds to the research base on different group formats for online support and the extent of participation and nonparticipation (lurking) in online groups. It provides a springboard for additional studies that include ethnic minorities, people with different types of cancer, and men.

Late effects of treatment for long-term cancer survivors: qualitative analysis of an online support group.

Ten million cancer survivors in the United States are at increased risk for developing late effects of treatment. Due to a lack of consistent follow-up care, many long-term cancer survivors use the Internet as a source of information and support. Research on online support for this cohort is lacking. The purposes of this study were to identify major themes related to long-term cancer survivorship and report late effects of treatment as described by members of an online support group. A qualitative descriptive method was utilized. Seventy-five long-term cancer survivors posted 300 messages online during an 8-week period and reported a wide variety of late effects. Three categorical schemes were identified: information exchange, symptomatology, and frustration with healthcare providers. Cancer survivors are utilizing Internet resources to find health-related information and support that has not been provided by healthcare providers. Additional research is needed to generate knowledge about the role of online support for long-term cancer survivors.

Online support for employed informal caregivers: psychosocial outcomes.

The overall objectives of this project were to evaluate whether psychosocial outcomes in employed family caregivers of people with chronic disease, who participate in online support, differ from nonactive participants and whether psychosocial outcomes differ based on the format of online group support. A randomized longitudinal design comparing two types of online support groups and nonactive participants, on the basis of three principal measures, was utilized. Eighty-six self-reported family caregivers of people with chronic disease, who spoke English and had Internet access, took part in the study. Subjects were randomly assigned to professionally facilitated/psychoeducational or moderated/peer-directed online support groups for a period of 12 weeks. The setting was a password-protected Web page housed on a university server. Independent variables were type of online support groups and level of participation; the dependent variables were depressive symptoms, caregiver burden, and caregiver quality of life. There were significant differences in depressive symptoms and quality of life among nonactive participants and either of the two intervention groups, but not between the two intervention groups. Results suggest that professionally facilitated/psychoeducational and moderated/peer-directed online support groups help reduce depressive symptoms and improve quality of life for those who actively participate and that both types of online support groups provided similar benefits. Men and minorities should be targeted in future caregiver research.

Asian/Pacific Islander American women: age and death rates during hospitalization for breast cancer.

PURPOSE/OBJECTIVES To investigate whether differences in age and death rates exist between hospitalized Asian/Pacific Islander American (APIA) women and women of other racial groups. DESIGN Secondary data analysis of a national data set. SETTING The Healthcare Cost and Utilization Project Nationwide Inpatient Sample, Release 6, was used to obtain hospitalization data on women with breast cancer based on racial status. A total of 20,507 hospitalization records met the study criteria. SAMPLE All women who were hospitalized with a primary diagnosis of breast cancer, were older than 18, and did not die during hospitalization, plus all women who met the criteria stated above but died during hospitalization. METHODS Secondary data analysis. Post hoc analysis was used to identify significant differences among racial groups. FINDINGS Significant differences were found between APIA and Caucasian and Latino women. Significant differences based on race were found between subjects who had died during hospitalization. On average, APIA women were the youngest to die. CONCLUSIONS APIA women with breast cancer were among the youngest women being hospitalized and the youngest to die during hospitalization. IMPLICATIONS FOR NURSING Cultural awareness by nurses is critical when discussing methods for prevention and early detection of breast cancer with minority women. Targeting new immigrants is a priority for those who screen and educate women about detection and treatment of breast cancer.

Racial Disparities in Hospitalized Elderly Patients with Chronic Heart Failure

The purpose of this study was to examine the impact of race on length of hospital stay (LOS) and number of procedures on elderly persons hospitalized with chronic heart failure (CHF). Secondary data analysis was used to obtain data on 99,543 hospitalized Medicare patients with CHF age 65 years or older. MANOVA was utilized to examine the effects of race, age, and total hospital charges on LOS, number of procedures, and diagnosis. Asian American Pacific Islanders had significantly higher number of procedures and LOS compared to Whites. The combined dependent variables were significantly affected by race, F(9, 99,543) = 121.95, p = .000; the covariates of age, F(3, 99,543) = 720.65, p = .000; and total charges F(3, 99,543) = 38,962.95, p = .000. LOS accounted for 50% of the variance. Studies that examine cultural variables and their effect on LOS and number of procedures are needed.

Emergence of Yalom's Therapeutic Factors in a Peer-Led, Asynchronous, Online Support Group for Family Caregivers

Support groups fill a critical void in the health care system, harnessing the power of shared experiences to provide support to group members. Likewise, family caregivers fill a void in the health care system, providing billions in unpaid care to the chronically ill. Caregiver support groups offer an opportunity for alleviating the psychological burden of caregiving. The power of any group, including a support group, to foster psychological well-being lies in its ability to cultivate Yaloms therapeutic factors. Gaps in the literature remain regarding the ability of non-prototypical groups to promote therapeutic mechanisms of change. The purpose of this study was to determine if and when Yaloms therapeutic group factors emerged in a peer-led support group delivered in an asynchronous, online format. Qualitative content analysis utilizing deductive category application was employed. Participants’ responses were coded and frequency counts were conducted. Results revealed that 9 of 11 therapeutic factors emerged over the course of the group, with Group Cohesiveness, Catharsis, Imparting of Information, and Universality occurring most often. Several factors, including Interpersonal Learning, Corrective Recapitulation of the Primary Family Group, Imitative Behavior, and Development of Socializing Techniques were absent or virtually absent, likely due to the peer-led format of the group. Progression of therapeutic factors over the course of the group is presented. Findings demonstrate the presence of a variety of Yaloms therapeutic factors in an asynchronous, peer-led online support group.

Conducting nursing research with undergraduate students: a collaborative, participatory approach.

The importance of participatory research experience for undergraduate students is emphasized across disciplines, including nursing. Vessey and DeMarco described an undergraduate research fellows program designed to promote student participation in research. The program included a day-and-a-half retreat for participants and follow-up seminars that focused on team building, writing abstracts, and creating effective posters to illustrate research findings. Wheeler and colleagues described an innovative collaborative, participatory approach to research which was designed to address the research goals of both faculty and undergraduate nursing students. The program provided hands-on experience to all undergraduate nursing students enrolled in a required (14-week) research course during their junior year. Briefly, it involved mutually beneficial relationships, whereby faculty members mentored undergraduate nursing students in return for assistance with current or planned research projects. Our research team, composed of a faculty mentor and 3 undergraduate nursing students, applied this collaborative participatory approach to conduct a qualitative analysis of messages posted on an online breast cancer support group.