scholarly journals Parenting Experiences of Cancer Patients with Minor Children and Their Conversations About the Possibility of Death: A Cross-Sectional Web-Based Survey for an Online Cancer Community

2022 ◽  
Author(s):  
Yuko Usui ◽  
Kazuhiro Kosugi ◽  
Yohei Nishiguchi ◽  
Tomofumi Miura ◽  
Daisuke Fujisawa ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Peer Support ◽  
Support Group ◽  
Cross Sectional ◽  
Web Based ◽  
Know How ◽  
Peer Support Group ◽  
Disease Condition ◽  
Minor Children ◽  
Experience Difficulty

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.

scholarly journals Hubungan Dukungan Keluarga dan Depresi Dengan Kualitas Hidup pada Pasien dengan HIV/AIDS di Wonogiri, Jawa Tengah

2020 ◽  
Vol 11 (3) ◽  
pp. 307
Author(s):  
Marni Marni ◽  
Nita Yunianti Ratnasari ◽  
Putri Halimu Husna ◽  
Domingos Soares
Keyword(s):  
Quality Of Life ◽  
Family Support ◽  
Peer Support ◽  
Support Group ◽  
P Value ◽  
Aids Patients ◽  
Cross Sectional ◽  
Peer Support Group ◽  
Hiv Aids

The number of people with HIV / AIDS in Indonesia is increasing from year to year, various problems that occur in patients with HIV / AIDS, namely physical, social and psychological problems. To overcome problems related to opportunistic infections, support antiretroviral therapy, prevent transmission of HIV / AIDS to others, motivate families to provide support and care for patients to be physically fit and not reportedly restore the patient's good quality of life. The purpose of this study was to analyze the relationship between family support and recovery with the quality of life of HIV / AIDS patients in the Gajah Mungkur Peer Support Group in Wonogiri, Central Java, Indonesia. The design of this research is quantitative research with cross sectional study. The population is HIV / AIDS patients who are members of the Gajah Mungkur Wonogiri Peer Support Group which is supported by around 130 people. The sampling technique with total sampling technique. Data collection tools are using a questionnaire, family support, Beck Depression Inventory (BDI), and WHOQOLHIV-BREF. Data were analyzed univariately, bivariate using the chi-square test, and multivariate analysis using multiple logistic regression tests. The p-value of the significance of the depression variable is 0.010 '<0.05, which means the significance of a significant relationship between the level of depression to quality of life. There is a significant relationship between family support and recovery rates on the quality of life of HIV / AIDS patients in the Gajah Mungkur Wonogiri Peer Support Group. Keywords: depression; family support; HIV / AIDS; quality of life ABSTRAK Jumlah penderita HIV/AIDS di Indonesia semakin meningkat dari tahun ke tahun, Berbagai masalah terjadi pada pasien HIV/AIDS, yaitu masalah fisik, sosial dan psikis. Untuk mengatasi masalah tersebut pengendalian infeksi oportunistik, pemberian terapi ARV, pencegahan penularan HIV/AIDS kepada orang lain, memberi motivasi kepada keluarga untuk memberi dukungan dan merawat pasien agarfisik sehat dan tidak terjadi depresi sehingga kualitas hidup pasien baik. Tujuan penelitian ini adalah menganalisis hubungan antara dukungan keluarga dan depresi dengan kualitas hidup pasien HIV/AIDS di Kelompok Dukungan Sebaya Gajah Mungkur Wonogiri, Jawa Tengah, Indonesia. Design Penelitian ini adalah penelitian kuantitatif dengan studi pendekatan cross sectional. Populasi adalah Pasien HIV/AIDS yang tergabung dalam Kelompok Dukungan Sebaya Gajah Mungkur Wonogiri yang berjumlah sekitar 130 orang. Teknik pengambilan sampel dengan teknik total sampling. Alat untuk mengumpulkan data yaitu dengan menggunakan kuesioner, dukungan keluarga, Beck Depression Inventory (BDI), dan WHOQOLHIV-BREF.Data dianalisis secara univariat, bivariat menggunakan uji chi-square, dan analisis multivariat menggunakan uji regresi logistic berganda. Nilai p-value signifikansi variabel depresi sebesar 0.010 '< 0.05 yang berarti bahwa terdapat hubunganyang signifikan antara tingkat depresi terhadap kualitas hidup Nilai p-value signifikansi variabel dukungan keluarga sebesar 0.003 '< 0.05 berarti terdapat hubungan yang signifikan antara dukungan keluarga terhadap kualitas hidup. Terdapat hubungan yang signifikan antara dukungan keluarga dan tingkat depresi terhadap kualitas hidup pasien HIV/AIDS di Kelompok Dukungan Sebaya Gajah Mungkur Wonogiri. Kata kunci: depresi; dukungan keluarga; HIV/AIDS; kualitas hidup

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

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.

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

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.

Genderdysforie en ASS

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Tatiana Brandsma ◽  
Kirsten Visser
Keyword(s):  
Peer Support ◽  
Support Group ◽  
Autism Spectrum ◽  
Gender Variance ◽  
Medical Interventions ◽  
Peer Support Group ◽  
And Gender ◽  
Gender Presentation ◽  
Adolescents With Asd

There is a growing interest in the co-occurrence of autism spectrum disorder (ASD) and gender dysphoria (GD). Research has shown that people with ASD show more gender variance than people without ASD. Due to the difficulties associated with ASD (limited social skills, problems in information processing and difficulty with change), regular GD treatment does not seem to be adequately equipped for this specific group. In this study we want to gain insight into the clinical needs of adolescents with ASD and GD and their parents. We are conducting a pilot study to the effects of a specific peer support group for adolescents with ASD and GD on quality of life. A pre-posttest design is used. Prior to the start of the support group, during each meeting and at the end of the support group, the adolescents fill out several short questionnaires. The ASD and Gender support group consists of nine monthly meetings for the adolescents, covering topics such as autism and gender-related needs, psychoeducation on medical interventions, environmental factors, gender expression and practicing gender presentation skills. Simultaneously, parents can follow the parent meetings. Currently, three rounds of the peer support group have started (each round with about 10-12 adolescents).

scholarly journals Peer support for adolescent girls living with scoliosis: finding a digital community

2022 ◽  
Vol 9 (1) ◽  
pp. 10-11
Author(s):  
Marie Vigouroux ◽  
Kristina Amja ◽  
Richard B. Hovey
Keyword(s):  
Peer Support ◽  
Support Group ◽  
Adolescent Girls ◽  
Structured Interviews ◽  
Future Directions ◽  
Level Of Involvement ◽  
Philosophical Hermeneutic ◽  
Peer Support Group ◽  
Digital Community ◽  
The Individual

Introduction : Scoliosis in a condition where a curve develops in the spine. Adolescent girls affected by scoliosis are significantly more likely to require treatment such as bracing or surgery than their male counterparts. Curvy Girls is a peer support group for adolescent girls with scoliosis that allows them to engage with each other in a safe environment. Objectives : This study endeavours to explore the experiences of adolescent girls living with scoliosis who are Curvy Girls members and understand how this peer support group has affected their experience. Approach : Sixteen participants were recruited through a senior board member of Curvy Girls. Data was gathered through semi-structured interviews with open-ended questions, transcribed verbatim, and analyzed using an applied philosophical hermeneutic approach, a practice of uncovering insights from transformational conversation. Findings : We found that the participants’ sense of belonging to Curvy Girls did not depend on their level of involvement with the group. Whether they were leaders in their in-person local group, or simply following the organization on social media, seeing themselves represented allowed the participants to feel like they belonged to the group. Future Directions : These findings may help clinicians, healthcare professionals, and peer support organisations deepen their understanding of the perspectives of this specific population. This transformed understanding could lead to the instauration of care and services that are better adapted to this population’s needs, resulting in lessening the burden of the condition on the individual and their support system.  

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