Expanding access to cancer peer support: development of a website to deliver written peer support that meets patients' individual emotional and informational needs while reducing potential harms.
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ABSTRACT:
SUBMITTER: Bovbjerg K
PROVIDER: S-EPMC9788802 | biostudies-literature | 2022
REPOSITORIES: biostudies-literature
Publications
Expanding access to cancer peer support: development of a website to deliver written peer support that meets patients' individual emotional and informational needs while reducing potential harms.
Bovbjerg Katrin K Graves Kristi K Waltz Margaret M Farrell David D Yanez Betina B Chicaiza Anthony A Omar Rahma R Thompson Rebecca R Kop Mariska M Van Denburg Alyssa N AN Lorch Danielle D Rowley Scott D SD Rini Christine C
Procedia computer science 20220921
Cancer patients often want information from "peers" with the same diagnosis or treatment. To increase access to this valuable resource, we developed a website to deliver written peer support to cancer patients undergoing stem cell transplant. Because little evidence describes how to optimize benefits or reduce potential harms of written peer support, we gathered multiple forms of stakeholder feedback to inform the website's ethical approach, personalization, design, function, and content: a Comm ...[more]
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Project description:ObjectiveThe aim of the study was to compare the informational needs of patients with ANCA-associated vasculitis (AAV).MethodsWe developed a Vasculitis Informational Needs Questionnaire that was distributed to members of Vasculitis UK (VUK) by mail and registrants of the Vasculitis Clinical Research Consortium (VCRC) online registry with self-reported AAV. Patients were asked to use a 5-point scale (1 = not important, 5 = extremely important) to rank aspects of information in the following domains: disease, investigations, medication, disease management and psychosocial care. The source and preferred method of educational delivery were recorded.ResultsThere were 314 VUK and 273 VCRC respondents. Respondents rated information on diagnosis, prognosis, investigations, treatment and side effects as extremely important. Information on patient support groups and psychosocial care was less important. There was no difference in the ratings of needs based on group, sex, age, disease duration, disease or method of questionnaire delivery. The most-preferred methods of providing information for both groups were by a doctor (with or without written material) or web based; educational courses and compact disc/digital video disc (CD/DVD) were the least-preferred methods.ConclusionThis study demonstrates that people with AAV seek specific information concerning their disease, treatment regimes and side effects and the results of investigations. Individuals preferred to receive this information from a doctor. Patients with AAV should be treated in a similar manner to patients with other chronic illnesses in which patient education is a fundamental part of care.
| S-EPMC4103516 | biostudies-literature
Project description:PurposeThis study describes the prevalence and predisposing factors for potentially modifiable unmet emotional, care/support, and information needs among adult survivors of childhood malignancies.MethodsA randomly selected/stratified sample of participants in the Childhood Cancer Survivor Study (CCSS) responded to the CCSS-Needs Assessment Questionnaire (CCSS-NAQ) (n = 1189; mean [SD] current age, 39.7 [7.7], range = 26-61 years; 60.9 % women; mean [SD] years since diagnosis, 31.6 [4.7]). Survivors self-reported demographic information, health concerns, and needs; diagnosis/treatment data were obtained from medical records. Adjusted proportional risk ratios (prevalence ratios, PRs) were used to evaluate 77 separate needs.ResultsFifty-four percent of survivors reported unmet psycho-emotional, 41 % coping, and 35 % care/support needs; 51, 35, and 33 %, respectively, reported unmet information needs related to cancer/treatment, the health care system, and surveillance. Female sex and annual income <$60K were associated with multiple needs; fewer needs were linked to diagnosis/years since/or age at diagnosis. Having moderate/extreme cancer-related anxiety/fear was associated with all needs, including a >6-fold increased prevalence for help dealing with "worry" (PR = 6.06; 95 % confidence interval [CI], 3.79-9.69) and anxiety (PR = 6.10; 95 % CI, 3.82-9.72) and a >5-fold increased prevalence for "needing to move on with life" (PR = 5.56; 95 % CI, 3.34-9.25) and dealing with "uncertainty about the future" (PR = 5.50; 95 % CI, 3.44-8.77). Radiation exposure and perceived health status were related to 42 and 29 needs, respectively.ConclusionsDemographic factors, disease/treatment characteristics, and intrapersonal factors can be used to profile survivors' unmet emotional, care/support, and information needs.Implications for cancer survivorsThese data can be used to enhance provider-survivor communication, identify at-risk subsamples, and appraise core intervention content.
| S-EPMC5341614 | biostudies-literature
Project description:BACKGROUND:Frailty has been recognized as an important medical syndrome in older adults. Growing literature supports the clinical application of frailty but US older adults' perceptions of frailty have not been explored. We aim to examine perceptions and informational needs about frailty among older adults. METHODS:This was a qualitative study involving focus groups of community-dwelling older adults with diverse age and frailty status. We explored participants' beliefs and knowledge about frailty and informational needs about frailty as a medical syndrome. RESULTS:The participants' mean age was 76.3. Of the 29 participants, 21 (72%) were female, and 21 (72%) were white. We identified three major themes: 1) Older adults' perceptions of frailty differed from the definition used in medical literature; they often perceived a psychological component to being frailty and some were skeptical of the syndromic definition based on multiple symptoms. 2) Compared to participants who were non-frail or pre-frail, participants who were frail were more receptive to discussing their frailty status with clinicians; 3) Participants wanted know about how to treat or prevent frailty and the risks associated with being frail. Many participants felt that these information can be conveyed without necessarily using the specific term "frail", which they perceived to have a negative connotation. CONCLUSIONS:Older adults, especially those who are frail, may be interested to discuss frailty as a medical syndrome. However, negative perceptions are associated with the term "frail" and may be a barrier to clinical application of frailty. Further research is needed to understand acceptable ways for communicating about frailty in clinical practice.
| S-EPMC5809948 | biostudies-literature
Project description:BackgroundBeyond physical health, managing type 1 diabetes (T1D) also encompasses a psychological component, including diabetes distress, that is, the worries, fears, and frustrations associated with meeting self-care demands over the lifetime. While digital health solutions have been increasingly used to address emotional health in diabetes, these technologies may not uniformly meet the unique concerns and technological savvy across all age groups.ObjectiveThis study aimed to explore the mental health needs of adolescents with T1D, determine their preferred modalities for app-based mental health support, and identify desirable design features for peer-delivered mental health support modeled on an app designed for adults with T1D.MethodsA semistructured qualitative focus group study was conducted with adolescents with T1D and parents of adolescents with T1D. Data were collected through pre-focus group surveys, including sociodemographic background, diabetes status, health care experiences, and focus group sessions, including their opinions on peer support and technology. A thematic analysis following an inductive and iterative process was performed to develop themes and subthemes from the collected information.ResultsFocus group participants included 10 adolescents (mean 16, SD 1 years; 8/10, 80% female; who had been living with diabetes for an average of 9, SD 5 years) and 10 parents (mean age 51, SD 7 years; 9/10, 90% female). Four core themes emerged: (1) experience: navigating adolescence with T1D, (2) empowerment: support systems that enabled better management of their T1D, (3) obstacles: societal barriers that affect adolescents' T1D management, and (4) innovation: adolescent-driven preferences for digital peer support platforms.ConclusionsApp-based peer support offers a promising avenue for addressing the mental health needs of adolescents with T1D. Understanding the unique support needs of these adolescents and using this information to suggest design considerations for a mental health peer support app is an important step toward addressing their complex emotional and social challenges.
| S-EPMC11791445 | biostudies-literature
Project description:BackgroundMental health problems among young people are of growing concern globally. UK adolescent mental health services are increasingly restricted to those with the most severe needs. Many young people turn to the internet for advice and support, but little is known about the effectiveness, and potential harms, of online support. Kooth is a widely-used, anonymised and moderated online platform offering access to professional and peer support. This pilot evaluation sought to assess changes in the wellbeing and mental health of Kooth users, and changes in their use of formal services, over one month. We explored how community aspects of the site were used, and we considered the economic implications for commissioners making Kooth available to young people.MethodsWe surveyed young people when they first accessed Kooth and again one month later (n = 302). Respondents completed measures of mental health and wellbeing, including family relationships and pandemic-related anxiety, and reported on their use of services and, at follow-up, their perceptions of whether and how they had benefitted. We carried out qualitative interviews with ten participants, exploring perceptions of the Kooth community and its impact.ResultsWe found improvements across nearly all measures, including reductions in psychological distress, suicidal ideation and loneliness. Subsample analyses suggested similar benefits for those who used only the community/peer parts of Kooth as for those who engaged with Kooth's counsellors. Participants reported learning from peers' suggestions and experiences, described as different from the advice given by professionals. Helping others gave users a sense of purpose; participants learnt self-help strategies and became more confident in social interactions. Service use and opinion data suggested Kooth experiences may help users make more appropriate and effective use of formal services.ConclusionThis pilot evaluation suggests that Kooth is likely to be a cost-effective way of providing preventative support to young people with concerns about their mental health, with possible benefits across a range of domains which could be investigated in a future controlled trial.
| S-EPMC9555699 | biostudies-literature
Project description:BackgroundMany people who have self-harmed prefer informal sources of support or support from those with lived experience. However, little is known about whether peer support improves outcomes for people who have self-harmed or about the risks of peer support interventions in non-clinical settings.AimsThe aims of this review were to examine the effectiveness, acceptability and potential risks of peer support for self-harm, and how these risks might be mitigated.MethodWe searched bibliographic databases and grey literature for papers published since 2000. We included peer support for self-harm that occurred in voluntary-sector organisations providing one-to-one or group support, or via moderated online peer support forums.ResultsEight of the ten papers included focused on peer support that was delivered through online media. No study compared peer support with other treatments or a control group, so limited conclusions could be made about its effectiveness. Peer support for self-harm was found to be acceptable and was viewed as having a range of benefits including a sense of community, empowerment, and access to information and support. The most commonly perceived risk associated with peer support was the potential for triggering self-harm.ConclusionsOur findings highlighted a range of benefits of being part of a group with very specific shared experiences. Mitigations for potential risks include organisations using professional facilitators for groups, trigger warnings for online forums, and providing regular supervision and training so that peers are prepared and feel confident to support vulnerable people while maintaining their own emotional health.
| S-EPMC8811789 | biostudies-literature
Project description:BackgroundTailored, web-assisted interventions can reach many smokers. Content from other smokers (peers) through crowdsourcing could enhance relevance.PurposeTo evaluate whether peers can generate tailored messages encouraging other smokers to use a web-assisted tobacco intervention (Decide2Quit.org).MethodsPhase 1: In 2009, smokers wrote messages in response to scenarios for peer advice. These smoker-to-smoker (S2S) messages were coded to identify themes. Phase 2: resulting S2S messages, and comparison expert messages, were then e-mailed to newly registered smokers. In 2012, subsequent Decide2Quit.org visits following S2S or expert-written e-mails were compared.ResultsPhase 1: a total of 39 smokers produced 2886 messages (message themes: attitudes and expectations, improvements in quality of life, seeking help, and behavioral strategies). For not-ready-to-quit scenarios, S2S messages focused more on expectations around a quit attempt and how quitting would change an individual's quality of life. In contrast, for ready-to-quit scenarios, S2S messages focused on behavioral strategies for quitting. Phase 2: In multivariable analysis, S2S messages were more likely to generate a return visit (OR=2.03, 95% CI=1.74, 2.35), compared to expert messages. A significant effect modification of this association was found, by time-from-registration and message codes (both interaction terms p<0.01). In stratified analyses, S2S codes that were related more to "social" and "real-life" aspects of smoking were driving the main association of S2S and increased return visits.ConclusionsS2S peer messages that increased longitudinal engagement in a web-assisted tobacco intervention were successfully collected and delivered. S2S messages expanded beyond the biomedical model to enhance relevance of messages.Trial registrationThis study is registered at www.clinicaltrials.gov NCT00797628 (web-delivered provider intervention for tobacco control [QUIT-PRIMO]) and NCT01108432 (DPBRN Hygienists Internet Quality Improvement in Tobacco Cessation [HiQuit]).
| S-EPMC3806191 | biostudies-literature
Project description:ObjectivesThis study evaluated emotional, informational and instrumental support needs in patients with breast cancer who had undergone surgery, then identified the variables associated with those needs.DesignThis was a cross-sectional survey study.SettingQuestionnaires were distributed in tertiary hospitals in China between January 2018 and July 2020.ParticipantsWe recruited 477 eligible patients with breast cancer via convenience sampling. Due to exclusions for response errors, the final analysed sample included 461 participants (mean age of 50.9 years). Each completed a questionnaire consisting of a sociodemographic information component and three short forms from the Patient-Reported Outcome Measurement Information System (social relationships short forms, anxiety short form and depression short form). Subsequent analyses included the χ2 test, Pearson correlation and multivariate regression.ResultsThe T scores for informational support were lower than those for the reference group (general population), while those for emotional and informational support were average. Marital status, childbearing history, lifestyle, employment status, anxiety and depression levels were related to the scores for emotional, informational and instrumental support in this population. The regression analysis revealed that emotional support levels, instrumental support levels, marital status, employment status, anxiety and depression outcomes were predictors for informational support levels.ConclusionsInformational support should be specifically assessed and promoted among patients with breast cancer in general, while marital status, childbearing history, lifestyle, employment status, anxiety and depression levels should be evaluated when conducting interventions to promote emotional, informational and instrumental support for those who have undergone surgery. Early and regular screenings for high-risk patients will help nurses identify those who are likely to benefit from targeted preventive interventions aimed at emotional, informational and instrumental support issues.Trial registration numberChiCTR2000035439; ClinicalTrials.gov registry.
| S-EPMC8354258 | biostudies-literature
Project description:BackgroundPatients with rare diseases such as congenital hypogonadotropic hypogonadism (CHH) are dispersed, often challenged to find specialized care and face other health disparities. The internet has the potential to reach a wide audience of rare disease patients and can help connect patients and specialists. Therefore, this study aimed to: (i) determine if web-based platforms could be effectively used to conduct an online needs assessment of dispersed CHH patients; (ii) identify the unmet health and informational needs of CHH patients and (iii) assess patient acceptability regarding patient-centered, web-based interventions to bridge shortfalls in care.MethodsA sequential mixed-methods design was used: first, an online survey was conducted to evaluate health promoting behavior and identify unmet health and informational needs of CHH men. Subsequently, patient focus groups were held to explore specific patient-identified targets for care and to examine the acceptability of possible online interventions. Descriptive statistics and thematic qualitative analyses were used.Results105 male participants completed the online survey (mean age 37 ± 11, range 19-66 years) representing a spectrum of patients across a broad socioeconomic range and all but one subject had adequate healthcare literacy. The survey revealed periods of non-adherence to treatment (34/93, 37%) and gaps in healthcare (36/87, 41%) exceeding one year. Patient focus groups identified lasting psychological effects related to feelings of isolation, shame and body-image concerns. Survey respondents were active internet users, nearly all had sought CHH information online (101/105, 96%), and they rated the internet, healthcare providers, and online community as equally important CHH information sources. Focus group participants were overwhelmingly positive regarding online interventions/support with links to reach expert healthcare providers and for peer-to-peer support.ConclusionThe web-based needs assessment was an effective way to reach dispersed CHH patients. These individuals often have long gaps in care and struggle with the psychosocial sequelae of CHH. They are highly motivated internet users seeking information and tapping into online communities and are receptive to novel web-based interventions addressing their unmet needs.
| S-EPMC4059885 | biostudies-literature
Project description:PurposePrevious studies suggest that within radiation oncology, medical physicists (MP) experience high workloads. Little is known about how MPs use social support (SS) in times of stress.MethodsIn collaboration with the Workgroup on Prevention of Medical Error, the American Association of Physicists in Medicine administered this Human Investigation Committee (HIC) approved email survey to 8566 members. Respondents were considered likely to seek SS if they answered (probably/definitely would) and unlikely to seek support if they answered (probably/definitely would not). Logistic regression was applied to determine associations between demographic factors and willingness to seek support as well as perception of barriers.ResultsOne thousand two hundred and ninety-seven members (15.1%) accessed and gave consent for the survey. One thousand and one (11.7%) respondents answered all relevant questions. Respondents were predominantly male (69.1%), MP in radiation oncology (81.8%), private practice (51.6%), with practice duration> 10 yr (60.2%). MPs were likely to seek SS for personal physical illness (78.63%), involvement in a medical error (73.94%) or adverse patient outcome (75.17%). MPs sought SS in the setting of personal fatigue (33.2%) or burnout (44.3%). Barriers to seeking SS were lack of time (80.3%), and uncertainty about whom to access (70.7%). MPs responded that they would be most likely to seek support from an equally experienced medical physicist colleague (81.0%). Most MPs (67.0%) identified as having experienced stressors, with serious family illness (35.2%), or burnout (32.8%) being most common. Factors associated with MPs unwillingness to seek SS for medical error included> 20 yr in practice (vs still in training - OR 0.30, P = 0.015), and male gender (OR 0.60, P = 0.003). Male gender was associated with the lowest willingness to seek support (OR 2.10, P = 0.0001), but also with fewer perceived barriers (OR 1.60, P = 0.0075).ConclusionWillingness to seek SS is demonstrated, and MPs want colleagues to provide support. Given these results, peer support could be considered among MPs.
| S-EPMC6753865 | biostudies-literature