Association Between Loneliness and the Frequency of Using Online Peer Support Groups Among Cancer Patients With Minor Children: A Cross-Sectional Web-Based Study

Abstract Purpose Many cancer patients with minor children experience difficulty when talking about their illness with their children. The aim of this study is to investigate the parenting experiences of cancer patients with minor children and their conversations about the possibility of death. Methods A cross-sectional web-based survey was conducted between April and May 2019. Cancer patients with minor children were recruited from among an online peer support group called “Cancer Parents”. The participants were asked to complete a questionnaire about their experiences talking about their illness with their children. The participants were classified into those who disclosed their cancer to their children (“disclosed group”), and those who didn’t disclose (“undisclosed group”). The association between whether they talked with their children about their cancer and their conversations about the possibility of death were examined. Results A total of 370 participants were analyzed (80.8% female, median age 43.0 years). The disclosed group (n = 274, 74.1%) wanted to know what their child felt than the undisclosed group (p < 0.001). The undisclosed group didn’t want their children to see their suffering (p = 0.002) and didn’t know how to explain their disease condition ( p < 0.002). Both the disclosed (42.1%) and undisclosed (6.5%) groups told their children about the possibility of death. Conclusion This study showed the disclosed group wanted to know their children’s feelings and they tended to have a conversation about the possibility of death with their children, compared to the undisclosed group.

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Factors associated with economic burden among cancer patients with minor children: A cross-sectional web-based survey of an online cancer community

Annals of Oncology ◽

10.1093/annonc/mdz430.008 ◽

2019 ◽

Vol 30 ◽

pp. ix120

Author(s):

M. Yuki ◽

K. Kosugi ◽

Y. Nishiguchi ◽

T. Miura ◽

D. Fujisawa ◽

...

Keyword(s):

Cancer Patients ◽

Economic Burden ◽

Cross Sectional ◽

Web Based ◽

Factors Associated ◽

Minor Children

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Parenting experiences of cancer patients with minor children and their conversations about the possibility of death: A cross-sectional web-based survey for the online cancer community

Annals of Oncology ◽

10.1093/annonc/mdz430.001 ◽

2019 ◽

Vol 30 ◽

pp. ix118

Author(s):

Y. Usui ◽

K. Kosugi ◽

Y. Nishiguchi ◽

T. Miura ◽

D. Fujisawa ◽

...

Keyword(s):

Cancer Patients ◽

Cross Sectional ◽

Web Based ◽

Minor Children

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Determinants of cancer patients revealing their own cancers to minor children: A cross-sectional web-based survey in an online cancer community.

Journal of Clinical Oncology ◽

10.1200/jco.2019.37.31_suppl.23 ◽

2019 ◽

Vol 37 (31_suppl) ◽

pp. 23-23

Author(s):

Tatsuto Terada ◽

Kazuhiro Kosugi ◽

Yohei Nishiguchi ◽

Tomofumi Miura ◽

Daisuke Fujisawa ◽

...

Keyword(s):

Cancer Patients ◽

Online Community ◽

Cancer Site ◽

Cross Sectional ◽

Age And Gender ◽

Web Based ◽

Primary Cancer Site ◽

Minor Children ◽

Male Patients ◽

And Gender

23 Background: It is extremely stressful and difficult for cancer patients to tell their children that they had cancer. However, few small studies have been conducted to assess the characteristics of patients who told their children of their cancer. This study aimed to explore determinants of patients who revealed to their minor children that they had cancer. Methods: This was a sub-analysis of a cross-sectional web-based survey. Cancer patients with minor children were recruited from an online community and were asked to answer a questionnaire. Subjects diagnosed with cancer and whose eldest children were aged < 18 years were enrolled. Binomial logistic regression analysis was performed to assess the determinants of patients who revealed to their minor children that they had cancer. Results: Overall, 313 subjects were eligible [19.2% male; mean age (SD), 42.1 years (5.57)]. The commonest primary cancer site was the breast (32.9%), followed by gynecological organs (12.1%) and colorectal region (11.2%). Among the patients, 218 (69.6%) revealed their cancer to their children. In a multivariate analysis, children’s age > 6 years significantly correlated with parents revealing to their children that they had cancer compared to children’s age < 6 years [children aged 12–17 years: odds ratio (OR), 27.2; 95% confidence interval (CI), 9.52–77.93; p < 0.001; children aged 6–11 years: OR, 10.39; 95% CI, 4.53–23.86; p < 0.001]. In the subgroup analysis, children’s age, male patients with children aged 0–5 years (OR, 7.11; 95% CI, 1.14–44.22; p = 0.036), and female children aged 6–11 years (OR, 3.85; 95% CI, 1.1–13.51; p = 0.035) correlated with the parents revealing to their children that they had cancer. Conclusions: The decision to reveal parent’s cancer to minor children was affected by children’s age and gender of patients and their children.

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Role of Peer Support in Posttraumatic Growth Among Adolescent and Young Adult (AYA) Patients and Survivors with Pediatric and AYA Cancer

10.21203/rs.3.rs-1059986/v1 ◽

2021 ◽

Author(s):

Motohiro Matsui ◽

Kanako Taku ◽

Rina Tsutsumi ◽

Midori Ueno ◽

Mayuri Seto ◽

...

Keyword(s):

Posttraumatic Growth ◽

Cancer Patients ◽

Peer Support ◽

Psychosocial Interventions ◽

Adolescent And Young Adult ◽

Cross Sectional ◽

Web Based ◽

Community Or ◽

Stress Symptoms

Abstract Purpose Adolescents and young adults (AYA) who undergo cancer treatment sometimes report posttraumatic growth (PTG) and experience posttraumatic stress symptoms (PTSS). Although the importance of peer support has been demonstrated, its association with PTG, especially in the five, distinct domains of PTG, needs to be investigated further in AYA cancer survivors. The present study examined the role of demographics, peer support, and PTSS in PTG among AYA cancer patients and survivors. MethodsThe present, multicenter, cross-sectional, prospective, web-based study enrolled AYA cancer patients and survivors (median age 28 years). Of 549 AYA patients recruited, 212 patients from 11 cancer centers and 12 cancer patient communities agreed to participate by completing a self-reported measure of PTG (PTGIX-J) and providing information about their diagnosis, treatment, peer support (affiliation with an AYA patient community or friendship with other AYA cancer patients), social status, and PTSS. Multiple regression analysis was used to identify significant correlates in the total score and five PTG domains. ResultsIn general, PTG was positively associated with male sex, years since diagnosis, having a confidant, and friendship with other AYA cancer patients. PTG was not significantly related to age, age at diagnosis, affiliation to an AYA patient community or PTSS. Friendship with other AYA cancer patients was positively associated with all five PTG subscales. PTSS was not associated with PTG but was associated with a subscale of “appreciation of life”. For the five subscale scores, “belonging to a religion” was positively associated with “spiritual change,” and “having a confidant” and “a good relationship with siblings” were positively associated with “appreciation of life.” Conclusion “Having a confidant” and “friendship with other AYA cancer patients” was positively associated with PTG. Psychosocial interventions mobilizing peer support can potentially contribute to promoting PTG in AYA cancer patients.

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The Use of Web-Based Support Groups Versus Usual Quit-Smoking Care for Men and Women Aged 21-59 Years: Protocol for a Randomized Controlled Trial (Preprint)

10.2196/preprints.16417 ◽

2019 ◽

Author(s):

Cornelia Ann Pechmann ◽

Douglas Calder ◽

Connor Phillips ◽

Kevin Delucchi ◽

Judith J Prochaska

Keyword(s):

Randomized Controlled Trial ◽

Peer Support ◽

Support Groups ◽

Support Group ◽

Controlled Trial ◽

Web Based ◽

Randomized Controlled ◽

Quit Smoking ◽

Quitting Smoking

BACKGROUND Existing smoking cessation treatments are challenged by low engagement and high relapse rates, suggesting the need for more innovative, accessible, and interactive treatment strategies. Twitter is a Web-based platform that allows people to communicate with each other throughout the day using their phone. OBJECTIVE This study aims to leverage the social media platform of Twitter for fostering peer-to-peer support to decrease relapse with quitting smoking. Furthermore, the study will compare the effects of coed versus women-only groups on women’s success with quitting smoking. METHODS The study design is a Web-based, three-arm randomized controlled trial with two treatment arms (a coed or women-only Twitter support group) and a control arm. Participants are recruited online and are randomized to one of the conditions. All participants will receive 8 weeks of combination nicotine replacement therapy (patches plus their choice of gum or lozenges), serial emails with links to Smokefree.gov quit guides, and instructions to record their quit date online (and to quit smoking on that date) on a date falling within a week of initiation of the study. Participants randomized to a treatment arm are placed in a fully automated Twitter support group (coed or women-only), paired with a buddy (matched on age, gender, location, and education), and encouraged to communicate with the group and buddy via daily tweeted discussion topics and daily automated feedback texts (a positive tweet if they tweet and an encouraging tweet if they miss tweeting). Recruited online from across the continental United States, the sample consists of 215 male and 745 female current cigarette smokers wanting to quit, aged between 21 and 59 years. Self-assessed follow-up surveys are completed online at 1, 3, and 6 months after the date they selected to quit smoking, with salivary cotinine validation at 3 and 6 months. The primary outcome is sustained biochemically confirmed abstinence at the 6-month follow-up. RESULTS From November 2016 to September 2018, 960 participants in 36 groups were recruited for the randomized controlled trial, in addition to 20 participants in an initial pilot group. Data analysis will commence soon for the randomized controlled trial based on data from 896 of the 960 participants (93.3%), with 56 participants lost to follow-up and 8 dropouts. CONCLUSIONS This study combines the mobile platform of Twitter with a support group for quitting smoking. Findings will inform the efficacy of virtual peer-to-peer support groups for quitting smoking and potentially elucidate gender differences in quit rates found in prior research. CLINICALTRIAL ClinicalTrials.gov NCT02823028; https://clinicaltrials.gov/ct2/show/NCT02823028

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The Use of Web-Based Support Groups Versus Usual Quit-Smoking Care for Men and Women Aged 21-59 Years: Protocol for a Randomized Controlled Trial

JMIR Research Protocols ◽

10.2196/16417 ◽

2020 ◽

Vol 9 (1) ◽

pp. e16417

Author(s):

Cornelia Ann Pechmann ◽

Douglas Calder ◽

Connor Phillips ◽

Kevin Delucchi ◽

Judith J Prochaska

Keyword(s):

Randomized Controlled Trial ◽

Peer Support ◽

Support Groups ◽

Support Group ◽

Controlled Trial ◽

Web Based ◽

Randomized Controlled ◽

Quit Smoking ◽

Quitting Smoking

Background Existing smoking cessation treatments are challenged by low engagement and high relapse rates, suggesting the need for more innovative, accessible, and interactive treatment strategies. Twitter is a Web-based platform that allows people to communicate with each other throughout the day using their phone. Objective This study aims to leverage the social media platform of Twitter for fostering peer-to-peer support to decrease relapse with quitting smoking. Furthermore, the study will compare the effects of coed versus women-only groups on women’s success with quitting smoking. Methods The study design is a Web-based, three-arm randomized controlled trial with two treatment arms (a coed or women-only Twitter support group) and a control arm. Participants are recruited online and are randomized to one of the conditions. All participants will receive 8 weeks of combination nicotine replacement therapy (patches plus their choice of gum or lozenges), serial emails with links to Smokefree.gov quit guides, and instructions to record their quit date online (and to quit smoking on that date) on a date falling within a week of initiation of the study. Participants randomized to a treatment arm are placed in a fully automated Twitter support group (coed or women-only), paired with a buddy (matched on age, gender, location, and education), and encouraged to communicate with the group and buddy via daily tweeted discussion topics and daily automated feedback texts (a positive tweet if they tweet and an encouraging tweet if they miss tweeting). Recruited online from across the continental United States, the sample consists of 215 male and 745 female current cigarette smokers wanting to quit, aged between 21 and 59 years. Self-assessed follow-up surveys are completed online at 1, 3, and 6 months after the date they selected to quit smoking, with salivary cotinine validation at 3 and 6 months. The primary outcome is sustained biochemically confirmed abstinence at the 6-month follow-up. Results From November 2016 to September 2018, 960 participants in 36 groups were recruited for the randomized controlled trial, in addition to 20 participants in an initial pilot group. Data analysis will commence soon for the randomized controlled trial based on data from 896 of the 960 participants (93.3%), with 56 participants lost to follow-up and 8 dropouts. Conclusions This study combines the mobile platform of Twitter with a support group for quitting smoking. Findings will inform the efficacy of virtual peer-to-peer support groups for quitting smoking and potentially elucidate gender differences in quit rates found in prior research. Trial Registration ClinicalTrials.gov NCT02823028; https://clinicaltrials.gov/ct2/show/NCT02823028 International Registered Report Identifier (IRRID) DERR1-10.2196/16417

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Online and Recovery-Oriented Support Groups Facilitated by Peer Support Workers in Times of COVID-19: Protocol for a Feasibility Pre-Post Study

JMIR Research Protocols ◽

10.2196/22500 ◽

2020 ◽

Vol 9 (12) ◽

pp. e22500

Author(s):

Jean-Francois Pelletier ◽

Janie Houle ◽

Marie-Hélène Goulet ◽

Robert-Paul Juster ◽

Charles-Édouard Giguère ◽

...

Keyword(s):

Mental Health ◽

Peer Support ◽

Support Groups ◽

Mental Health Problems ◽

Control Group ◽

Web Based ◽

Clinical Recovery ◽

Study Results ◽

And Control ◽

The Impact

Background In times of pandemics, social distancing, isolation, and quarantine have precipitated depression, anxiety, and substance misuse. Scientific literature suggests that patients living with mental health problems or illnesses (MHPIs) who interact with peer support workers (PSWs) experience not only the empathy and connectedness that comes from similar life experiences but also feel hope in the possibility of recovery. So far, it is the effect of mental health teams or programs with PSWs that has been evaluated. Objective This paper presents the protocol for a web-based intervention facilitated by PSWs. The five principal research questions are whether this intervention will have an impact in terms of (Q1) personal-civic recovery and (Q2) clinical recovery, (Q3) how these recovery potentials can be impacted by the COVID-19 pandemic, (Q4) how the lived experience of persons in recovery can be mobilized to cope with such a situation, and (Q5) how sex and gender considerations can be taken into account for the pairing of PSWs with service users beyond considerations based solely on psychiatric diagnoses or specific MHPIs. This will help us assess the impact of PSWs in this setting. Methods PSWs will lead a typical informal peer support group within the larger context of online peer support groups, focusing on personal-civic recovery. They will be scripted with a fixed, predetermined duration (a series of 10 weekly 90-minute online workshops). There will be 2 experimental subgroups—patients diagnosed with (1) psychotic disorders (n=10) and (2) anxiety or mood disorders (n=10)—compared to a control group (n=10). Random assignment to the intervention and control arms will be conducted using a 2:1 ratio. Several instruments will be used to assess clinical recovery (eg, the Recovery Assessment Scale, the Citizenship Measure questionnaire). The COVID-19 Stress Scales will be used to assess effects in terms of clinical recovery and stress- or anxiety-related responses to COVID-19. Changes will be compared between groups from baseline to endpoint in the intervention and control groups using the Student paired sample t test. Results This pilot study was funded in March 2020. The protocol was approved on June 16, 2020, by the Research Ethics Committees of the Montreal Mental Health University Institute. Recruitment took place during the months of July and August, and results are expected in December 2020. Conclusions Study results will provide reliable evidence on the effectiveness of a web-based intervention provided by PSWs. The investigators, alongside key decision makers and patient partners, will ensure knowledge translation throughout, and our massive open online course (MOOC), The Fundamentals of Recovery, will be updated with the evidence and new knowledge generated by this feasibility study. Trial Registration ClinicalTrials.gov NCT04445324; https://clinicaltrials.gov/ct2/show/NCT04445324 International Registered Report Identifier (IRRID) PRR1-10.2196/22500

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Caregiving Burden among Informal Caregivers of Cancer Patients in Lagos, Nigeria

10.21203/rs.3.rs-769222/v1 ◽

2021 ◽

Author(s):

Adedoyin Ogunyemi ◽

Adizat K Umoru ◽

Adewumi O Alabi ◽

Bolanle C Adegboyega ◽

Ejiro Otokpa

Keyword(s):

Cancer Patients ◽

Support Groups ◽

Chronically Ill ◽

Tertiary Hospital ◽

Coping Mechanisms ◽

Sub Saharan Africa ◽

Cross Sectional ◽

Caregiving Burden ◽

Patient Reported ◽

Sub Saharan

Abstract Purpose: The coping mechanisms adopted by cancer caregivers especially in developing countries of the world is given little attention. The aim of this study was to assess the caregiving burden and coping mechanisms among caregivers of cancer patients attending a tertiary hospital in Lagos, Nigeria.Methods: This was a cross-sectional descriptive study. An interviewer-administered questionnaire, Zarit Burden Interview (ZBI) tool, Katz index instrument of activity, Lawton Brody tool and Brief-Coping Orientations to Problems Experienced (COPE) scale were used to collect data from 385 informal caregiver-patient dyads. The data was analyzed using the Epi Info version 7.Results: Of the 385 caregivers in the study, 162 (42.1%) were males and 223 (57.9%) were females. Almost half (47.3%) of the caregivers had severe burden and the mean ZBI score was 39.1 ± 12.5. Adult children caregivers (56.3%) of cancer patients reported the highest proportion of severe burden among the patients’ relatives. All the respondents who had been caregivers for over a period of 12 months and those who spend at least 12 hours on caregiving role daily experienced severe burden. Almost half (46.3%) of caregivers who received no support from other people in caring for the patient reported severe burden.Conclusion: Older caregivers experienced higher caregiving burden than their younger counterparts. Duration of caregiving was associated with level of caregiving burden experienced. Social support groups and health professional need to assist caregivers reduce the burden of caregiving to chronically ill patients in sub-Saharan Africa.

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