Displaying all 17 publications

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  1. Subramaniam V, Stewart MW, Smith JF
    J Pain Symptom Manage, 1999 May;17(5):376-83.
    PMID: 10355217
    To study the process of establishment, and evaluate the outcome of participation, in a self-help support group for people with chronic nonmalignant pain, members of a newly-established, consumer-led group participated in two interviews 5 months apart and a researcher observed group meetings. Participants reported significant benefits from participating in the group. They had a significant increase in functional ability and activity, and reported decreased recourse to health professionals, particularly family physicians. This study indicates that pain support groups can play a valuable role for people in pain, assisting with support and rehabilitation, and meeting needs that health professionals are often not appropriate or able to provide.
    Matched MeSH terms: Self-Help Groups*
  2. Kelly PJ, McCreanor K, Beck AK, Ingram I, O'Brien D, King A, et al.
    J Subst Abuse Treat, 2021 Dec;131:108568.
    PMID: 34446323 DOI: 10.1016/j.jsat.2021.108568
    BACKGROUND: Mutual support groups play an extremely important role in providing opportunities for people to engage in alcohol and other drug (AOD) treatment and support. SMART Recovery groups employ cognitive, behavioural and motivational principles and strategies to offer support for a range of addictive behaviours. COVID-19 fundamentally changed the way that these groups could be delivered.

    METHODS: A series of online meetings were conducted by the lead author (PK) and the SMART Recovery International Executive Officer (KM), with representatives from the SMART Recovery National Offices in the Ireland (DO), United States (MR), Australia (RM), and Denmark (BSH, DA), and the United Kingdom (AK). The meetings focused on discussing the impacts of COVID-19 on SMART Recovery in each of the regions.

    RESULTS: As a result of restrictions to prevent the transmission of COVID-19, the vast majority of SMART Recovery face-to-face meetings were required to cease globally. To ensure people still had access to AOD mutual support, SMART Recovery rapidly scaled up the provision of online groups. This upscaling has increased the number of groups in countries that had previously provided a limited number of online meetings (i.e., United States, England, Australia), and has meant that online groups are available for the first time in Denmark, Ireland, Hong Kong, Spain, Malaysia and Brazil.

    DISCUSSION: Whilst the urgent and rapid expansion of online groups was required to support people during the pandemic, it has also created an opportunity for the ongoing availability of online mutual support post-pandemic. The challenge for the research community is to critically evaluate the online delivery of mutual support groups, to better understand the mechanisms through which they may work, and to help understand the experience of people accessing the groups.

    Matched MeSH terms: Self-Help Groups
  3. Abu Kassim NL, Mohd Hanafiah K, Samad-Cheung H, Rahman MT
    Asia Pac J Public Health, 2015 Mar;27(2):NP495-505.
    PMID: 23386747 DOI: 10.1177/1010539512471074
    Given that breast cancer is the most prevalent form of cancer affecting Malaysian women and its low survival rate, this study investigates the possible influence of support group intervention on quality of life (QOL). It also examines the interrelationships between QOL subdomains as research has shown the influence of emotional expression on psychological and physical well-being. Rasch analysis was implemented to examine perception of QOL and the comparability of the Functional Assessment of Cancer Therapy General and Breast Cancer scales (FACT-G and FACT-B) of the Functional Assessment of Chronic Illness Therapy inventory. Results indicated that perception of QOL may be influenced by factors other than support group intervention. The FACT-G and FACT-B scales were comparable in the measurement of QOL for breast cancer, and the interrelationships between the QOL subdomains were supported. The findings of this study accentuate the importance of focusing support group interventions on improvement of emotional well-being to maintain patients' QOL despite the cancer.
    Matched MeSH terms: Self-Help Groups*
  4. Wilson S, Mogan S, Kaur K
    Int J Nurs Pract, 2020 Aug;26(4):e12833.
    PMID: 32189457 DOI: 10.1111/ijn.12833
    AIMS: To examine the pertinent issues discussed by endometriosis patients in Malaysia on MyEndosis Facebook group as an alternative platform for online support.

    METHODS: Using thematic analysis based on three frameworks, 120 posted messages and comments were examined from MyEndosis Facebook group-a support group for women with endometriosis from January to July 2014.

    RESULTS: Results showed the issues discussed were (a) personal struggles, (b) medication and treatment, (c) alternative medication, (d) side effects, and (e) medication recommended by doctors. While using this social medium, users found (a) emotional support, (b) esteem support, (c) information support, (d) network support, and (e) tangible assistance in their engagement with others.

    CONCLUSION: The analysis suggested that users' interactions were structured around information, emotion, and community building, which many doctors and nurses were not aware of. The group was shaped as a social network where peer users share social support, cultivate companionship, and exert social influence.

    Matched MeSH terms: Self-Help Groups*
  5. Kadravello A, Tan SB, Ho GF, Kaur R, Yip CH
    Medicina (Kaunas), 2021 Jul 07;57(7).
    PMID: 34356974 DOI: 10.3390/medicina57070693
    Background and Objective: Despite the increasing treatment options for patients with metastatic breast cancer (MBC), unmet needs remain common, especially in low and middle-income countries where resources are limited and MBC patients face many challenges. They often join support groups to cope with their unmet needs. Currently, many MBC patients connect with each other via online support group in view of the constant availability of support and rapid information exchange. The objective of this study is to determine the unmet needs of women with MBC from an online support group. Material and Methods: Messages in an online support group of twenty-two MBC patients over a period of three years from August 2016 till August 2019 were thematically analyzed. Results: Three themes were generated, (1) unmet information needs (2) unmet financial needs (3) unmet support needs. Women needed information on side effects of treatment, new treatment options and availability of clinical trials. Although Malaysia has universal health care coverage, access to treatment remains a major challenge. When treatment was not available in the public hospitals, or waiting lists were too long, women were forced to seek treatment in private hospitals, incurring financial catastrophe. Insufficient private insurance and inadequate social security payments force many women to consider stopping treatment. Women felt that they were not getting support from their clinicians in the public sector, who were quick to stop active treatment and advise palliation. On the other hand, clinicians in the private sector advise expensive treatment beyond the financial capability of the patients. Women with families also face the challenge of managing their family and household in addition to coping with their illness. Conclusions: There is a need for healthcare professionals, policy makers, and civil society to better address the needs of MBC patients through patient-centered, multidisciplinary and multi-organizational collaboration.
    Matched MeSH terms: Self-Help Groups
  6. Bauer R, Conell J, Glenn T, Alda M, Ardau R, Baune BT, et al.
    Nord J Psychiatry, 2017 Aug;71(6):473-476.
    PMID: 28696841 DOI: 10.1080/08039488.2017.1334819
    BACKGROUND: Peer support is an established component of recovery from bipolar disorder, and online support groups may offer opportunities to expand the use of peer support at the patient's convenience. Prior research in bipolar disorder has reported value from online support groups.

    AIMS: To understand the use of online support groups by patients with bipolar disorder as part of a larger project about information seeking.

    METHODS: The results are based on a one-time, paper-based anonymous survey about information seeking by patients with bipolar disorder, which was translated into 12 languages. The survey was completed between March 2014 and January 2016 and included questions on the use of online support groups. All patients were diagnosed by a psychiatrist. Analysis included descriptive statistics and general estimating equations to account for correlated data.

    RESULTS AND CONCLUSIONS: The survey was completed by 1222 patients in 17 countries. The patients used the Internet at a percentage similar to the general public. Of the Internet users who looked online for information about bipolar disorder, only 21.0% read or participated in support groups, chats, or forums for bipolar disorder (12.8% of the total sample). Given the benefits reported in prior research, clarification of the role of online support groups in bipolar disorder is needed. With only a minority of patients using online support groups, there are analytical challenges for future studies.

    Matched MeSH terms: Self-Help Groups/utilization*
  7. Dvaladze A, Kizub DA, Cabanes A, Nakigudde G, Aguilar B, Zujewski JA, et al.
    Cancer, 2020 May 15;126 Suppl 10:2439-2447.
    PMID: 32348570 DOI: 10.1002/cncr.32852
    BACKGROUND: Breast cancer advocacy movements, driven by advocate-led civil society organizations (CSOs), have proven to be a powerful force for the advancement of cancer control in high-income countries (HICs). However, although patient advocacy movements are growing in low-income and middle-income countries (LMICs) in response to an increasing cancer burden, the experiences and needs of advocate-led breast cancer CSOs in LMICs is understudied.

    METHODS: The authors conducted a qualitative study using in-depth interviews and focus group discussions with 98 participants representing 23 LMICs in Eastern Europe, Central Asia, East and Southern Africa, and Latin America.

    RESULTS: Despite geographic, cultural, and socioeconomic differences, the common themes that emerged from the data across the 3 regions are strikingly similar: trust, knowledge gaps, stigma, sharing experiences, and sustainability. The authors identified common facilitators (training/education, relationship building/networking, third-party facilitators, and communication) and barriers (mistrust, stigma, organizational fragility, difficulty translating HIC strategies) to establishing trust, collaboration, and advancing cancer advocacy efforts. To the authors' knowledge, the current study is the first to describe the role that coalitions and regional networks play in advancing breast cancer advocacy in LMICs across multiple regions.

    CONCLUSIONS: The findings of the current study corroborate the importance of investing in 3-way partnerships between CSOs, political leaders, and health experts. When provided with information that is evidence-based and resource appropriate, as well as opportunities to network, advocates are better equipped to achieve their goals. The authors propose that support for CSOs focuses on building trust through increasing opportunities for engagement, disseminating best practices and evidence-based information, and fostering the creation of platforms for partnerships and networks.

    Matched MeSH terms: Self-Help Groups/organization & administration*
  8. Dominic NA, Thirunavuk Arasoo VJ, Botross NP, Riad A, Biding C, Ramadas A
    Asian Pac J Cancer Prev, 2018 Jul 27;19(7):1809-1815.
    PMID: 30049192
    Background: There is a lack of evidence on the effectiveness of multifaceted group-based interventions to improve psychological well-being and health-related quality of life (HRQOL) of breast cancer (BCa) survivors in Malaysia. This study is aimed at assessing the effectiveness of such intervention program among the BCa survivors. Materials and Methods: This was a group-based intervention program with pre- and post-test design, carried out among BCa survivors (n=37) who were members of Breast Cancer Support Group Centre, Johor Bahru. A validated self-administered questionnaire was used to assess the impact of the program on psychosocial well-being and HRQOL of the participants. Results: The mean age of BCa survivors was 58.1 years (SD=9.7), with mean age at diagnosis of 49.9 years (SD=9.6). Majority of them were of Chinese ethnicity, married and had secondary level education, but were unemployed. More than 86% of them were diagnosed to have early BCa diagnosis and have since completed the treatment. There were significant decreases in median depression (p=0.001), anxiety (p<0.001) and stress (p<0.001) scores at post-intervention. More than 85% of the participants rated themselves to have a good or very good QOL at post-intervention, as opposed to 75.9% at pre-intervention. Significant improvements in several HR-QOL domain scores were seen, with psychological score improving the most (p<0.001), followed by social relationship (p=0.002) and physical health (p=0.004). Conclusions: Group-based multifaceted intervention can be a viable solution to improve psychosocial well-being of BCa survivors.
    Matched MeSH terms: Self-Help Groups*
  9. Chu SY, Sakai N, Mori K, Iverach L
    J Fluency Disord, 2017 Mar;51:1-7.
    PMID: 28212717 DOI: 10.1016/j.jfludis.2016.09.006
    PURPOSE: This study reports Japanese normative data for the Unhelpful Thoughts and Beliefs about Stuttering (UTBAS) scales. We outline the translation process, and evaluate the psychometric properties of the Japanese version of the UTBAS scales.

    METHODS: The translation of the UTBAS scales into Japanese (UTBAS-J) was completed using the standard forward-backward translation process, and was administered to 130 Japanese adults who stutter. To validate the UTBAS-J scales, scores for the Japanese and Australian cohorts were compared. Spearman correlations were conducted between the UTBAS-J and the Modified Erickson Communication Attitude scale (S-24), the self-assessment scale of speech (SA scale), and age. The test-retest reliability and internal consistency of the UTBAS-J were assessed. Independent t-tests were conducted to evaluate the differences in the UTBAS-J scales according to gender, speech treatment experience, and stuttering self-help group participation experience.

    RESULTS: The UTBAS-J showed good test-retest reliability, high internal consistency, and moderate to high significant correlations with S-24 and SA scale. A weak correlation was found between the UTBAS-J scales with age. No significant relationships were found between UTBAS-J scores, gender and speech treatment experience. However, those who participated in the stuttering self-help group demonstrated lower UTBAS-J scores than those who did not.

    CONCLUSION: Given the current scarcity of clinical assessment tools for adults who stutter in Japan, the UTBAS-J holds promise as an assessment tool and outcome measure for use in clinical and research environments.

    Matched MeSH terms: Self-Help Groups
  10. Ahmed SI, Farooqui M, Syed Sulaiman SA, Hassali MA, Lee CKC
    J Patient Exp, 2019 Mar;6(1):33-40.
    PMID: 31236449 DOI: 10.1177/2374373518770805
    Background: It is widely accepted that for HIV-positive persons on highly active antiretroviral treatment, high levels of adherence to treatment regimens are essential for promoting viral suppression and preventing drug resistance.

    Objectives: This qualitative study examines factors affecting the adherence to HIV/AIDS treatment among patients with HIV/AIDS at a local hospital in Malaysia.

    Methods: The data from purposefully selected patients were collected by in-depth interviews using a pretested interview guide. Saturation was reached at the 13th interview. All interviews were audio-taped and transcribed verbatim for analysis using thematic content analysis.

    Results: Fear and stigma of perceived negative image of HIV diagnosis, lack of disease understating, poor support from the community, and perceived severity or the treatment side effects were among the reasons of nonadherence. Appropriate education and motivation from the doctors and reduction in pill burden were suggested to improve adherence.

    Conclusion: Educational interventions, self-management, and peer and community supports were among the factors suggested to improve adherence. This necessitates uncovering efficient ways to boost doctor-patient communication and recognizing the role of support group for the social and psychological well-being of the patients.

    Matched MeSH terms: Self-Help Groups
  11. Hatim H, Zainuddin AA, Anizah A, Kalok A, Daud TIM, Ismail A, et al.
    J Pediatr Adolesc Gynecol, 2021 Apr;34(2):161-167.
    PMID: 33189898 DOI: 10.1016/j.jpag.2020.11.009
    STUDY OBJECTIVE: To explore the effect of the diagnosis of Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome on affected Malaysian women.

    DESIGN: Qualitative study with a quantitative component.

    SETTING: Pediatric and adolescent gynecology unit at Universiti Kebangsaan Malaysia Medical Centre, Malaysia.

    PARTICIPANTS: Twelve women with MRKH.

    INTERVENTIONS: Face-to-face interview and short questionnaire.

    MAIN OUTCOME MEASURES: Thematic analysis was used to understand participants' experiences.

    RESULTS: There were 7 themes identified: (1) delayed diagnoses; (2) doctors' roles and attitudes; (3) gender identity; (4) family and society's response; (5) reaction toward infertility; (6) managing sexual intimacy; and (7) coping mechanisms. Several participants consulted their physicians regarding their primary amenorrhea at an opportunistic setting. When they were referred to the gynecologists, they were dismayed at the lack of information given. The term, "MRKH" plays an important role to ease information-seeking. Participants felt that the doctors were insensitive toward them. Mental illness is a significant complication of MRKH. All participants acknowledged that infertility was the hardest part of the condition. The importance of blood lineage affects their outlook on childbearing options. Some were afraid of sexual intimacy and worried that they would not be able to satisfy their partners. Participants gained support and bonded with their counterparts in the MRKH support group.

    CONCLUSION: A multidisciplinary approach including medical, psychological, and social support is essential for the management of MRKH. Adequate information and sexual education plays the utmost importance in preventing social-related complications of MRKH.

    Matched MeSH terms: Self-Help Groups
  12. Mustafa KB, Ibrahim Nb, Noraziana AW, Ayu AS, Suhaiza A, Awang M
    MyJurnal
    Introduction: To describe the sociodemographic profile, contraceptive practice, and awareness of HIV infection among unmarried post partum women in the biggest government hospital in Pahang.
    Methods: A cross sectional questionnaire-proforma-based study was conducted for one year duration from August 2010 until July 2011 by identifying and recruiting all the unmarried women upon admission for delivery. Basic information were obtained from the use of patients’ case notes, and further related and necessary information were obtained from a direct face-to-face interview based on a proforma.
    Results: A total of 121 unmarried women were identified and recruited. The age ranged from 13 to 36 years with a mean age of 21.6 years. 31.4% were teenagers. Only 16% of patients have tertiary education, and 2.5% never had any formal education. About one third of the women were smokers or ex-smokers, 7.5% had consumed alcohol, but none denied ever use of any recreational drugs. Almost 9% has prior history of being sexually assaulted. About three quarter of the women never used any contraceptive method. Majority of the patients (85.1%) were aware of HIV transmission risk; 75% never had any antenatal checkup or booked at late gestation (> 20 weeks); and 45.8% were not aware of any support groups for single mothers. Conclusion: Single unmarried women are associated with disadvantaged sociodemographic profile.
    Contraceptive practice was also very low despite significant awareness towards risk of HIV infection. Further follow up, support and care should be offered to these women.
    Matched MeSH terms: Self-Help Groups
  13. Norhaniza, I., Abdullah, A., Aili, H.H., Manveen, K.S., Pillai, S.K.
    MyJurnal
    Mental health difficulties in children are often missed or dismissed. Adults too are often wary of bringing their children to such a facility. This paper is a descriptive study of a child mental health service utilization in Kuala Lumpur. Methods: The cases consisted of new cases from the month of January to December 2007 who attended the Psychiatry Adolescent and Child (PAC) Unit, University Malaya Medical Center (UMMC). Results: The children presented with a range of development, academic, behavior and emotional difficulties. There were 373 new cases of which the highest number of children were in the primary school-going age group (54.7%) and males (65.4%). Sixty percent of the cases had one single diagnosis. Children with Attention Deficit Hyperactive Disorder (ADHD) were the highest disorder seen in the single diagnosis group (27.3%) as well as in those with more than one diagnosis (61.5%). Primary support group difficulties were the most common co-morbid condition noted. Conclusion: It is essential that extensive screening of children and their families be done to detect family difficulties and co- morbid conditions, which would be necessary for favorable outcomes to be met.
    Matched MeSH terms: Self-Help Groups
  14. Lim, K.H., Sumarni, M.G., Kee, C.C., Norhamimah, A., Wan Rozita, W.M., Amal, N.M.
    MyJurnal
    Many studies on adolescent smoking have been conducted in Malaysia, but very limited information is available on smoking amongst lower secondary school male students (Forms 1 and 2). We present data from a baseline study in Kota Tinggi District, Johor on the psychosocial factors, stages of smoking acquisition and susceptibility to smoking initiation and their relationship to adolescent smoking. The study is the first wave of a 3-year longitudinal study which was conducted from March 2007 to May 2009, aimed to describe the prevalence of smoking among students in the lower secondary classes. A three stage stratified sampling was performed to obtain a sample. The Bogus Pipeline Method was employed to confirm smoking status. Prevalence of smoking was 35.5%. Smoking prevalence among students of schools located in the Federal Land Development Authority (FELDA) settlement areas (42.9%) was two-fold higher than in the rural and town schools combined (20.29%). Using the Fagerstrom scale, 90% of current smokers had lower addiction to nicotine. Smoking was associated with peer smoking [OR, 4.19 (95% CI, 2.57-6.82)], having a brother smoking [2.17 (1.31-3.61)], parental smoking [1.73 (1.17-2.80)] and locality where respondents attend school [1.94(1.11-3.39)]. The study indicates that, the prevalence of smoking was high in all areas especially FELDA settlement areas. Measures such as teaching of skills to resist social pressure to smoke, establishment of peer support groups and involvement of parents in anti-smoking programs are recommended to curb the high prevalence of smoking among lower secondary school students in Kota Tinggi.
    Matched MeSH terms: Self-Help Groups
  15. Nazatul, S.B., Ruby, H.
    JUMMEC, 2009;12(2):70-73.
    MyJurnal
    The exclusive breastfeeding rate in Malaysia is very low. However in recent years the awareness of breastfeeding among mothers has increased. A preliminary qualitative research was carried out on these motivated mothers. The objective of this study was to understand the challenges encountered by breastfeeding mothers and to explore the support and motivation received by them. Information from the motivated mothers was obtained from focus group discussion. Some obstacles faced by the mothers were lack of knowledge on breastfeeding and lack of support from health professionals, parents and siblings. Facilities to express breast milk while at work were not readily available. The main motivation to breastfeed came from the mother herself and support from the husband. A holistic approach must be used to help mothers to continue breastfeeding. This includes breastfeeding promotion and education, setting up more Baby Friendly Hospitals, availability of breastfeeding support groups and provision of enough breastfeeding facilities at work and public places.
    Matched MeSH terms: Self-Help Groups
  16. Manveen, K.S., Pillai, S.K., Muhsin, M., Salwina, W., Aili, H.H.
    MyJurnal
    The population of incarcerated sex offenders in Malaysia is steadily growing. Objective: This is a descriptive study to look at what clinical and developmental characteristic are present amongst the sex offenders in Malaysia, which could be possible mitigating factors. Methods: Data was collected from offenders located in 3 prisons where the offenders are held. Results: a total of 147 prisoners participated in the study. Slightly more than half of the victims were below the age of 18, of which 10% were below the age of 12. Three quarters of offenders were thirty years and older, while 12% were below 18 years. However their problems begun much earlier in their life with 50% of the offenders reporting that they had difficulties in their
    primary support group, resulting in them feeling their families were less expressive, their parents were distant and unsupportive.29% of the offenders had not lived with their parents from the age of 16. More than half of the offenders reported academic, behavior and developmental difficulties; they reported losing interest in their studies and were struggling during their schooling days. 43% had history of aggressive behaviour during their adolescent years and 76% had peers who often indulged in risky behaviors. 85% of the offenders were Muslim. 40% made the criteria of Attention Deficit Hyperactive Disorder and conduct disorder while a quarter were diagnosed with having personality disorder. Slightly more than half of the offenders had alcohol and drug-related problems, 36% had history of previous crimes, mainly drug and theft offence. Conclusion: The findings show that the sex offenders are indeed a heterogeneous group with pervasive familial, behaviour, academic and social problems which are possible risk that can be identified early in the lives of offenders.
    Matched MeSH terms: Self-Help Groups
  17. Maryam Farooqui, Mohamed Azmi Hassali, Aishah Knight Abdul Shatar, Asrul Akmal Shafie, Muhammad Aslam Farooqui, Fahad Saleem, et al.
    MyJurnal
    Objectives: Prayers, spiritual healing, yoga, meditation, t'ai chi, qigong and support groups are classified as mind body complementary therapies (MBCTs). The study aimed to examine the prevalence of MBCTs use and the Health Related Quality of Life (HRQoL) in a group of Malaysian cancer patients.
    Methods: This crosssectional study was conducted on 184 cancer patients at the oncology clinic of Penang general hospital, Malaysia. MBCTs was assessed using a self- administered questionnaire while the HRQoL of the participants was assessed by using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30).
    Results: Among the complementary and alternative medicines (CAM) users, 75(40.7%) patients self-reported using MBCTs while having cancer. Majority of MBCTs users were female 60(80%, p=0.01), aged between 38 and 57 (58%), and were of Malay ethnicity (61%). Socio-demographic factors including age (r=0.15, p=0.03) and monthly house-hold income (r= -0.25, p<0.001) were significantly correlated with MBCTs use. Prayers for health reasons was the most frequently practised MBCTs modality, followed by spiritual practices 20(10.8%), meditation 7(5.9%), t'ai chi 7(3.8%), music therapy 4(2.1%), qigong 1(0.5%), hypnotherapy 1(0.5%), and reiki 1(0.5%). Recommendations from friends and family members 53(70%) were the most common reasons of MBCTs use followed by patient's own will 22(29.3%). Health related Quality of Life (HRQoL) scores showed significant difference in all functional and symptoms scores among MBCTs users and non-users (p<0.05). Conclusion: The study helps to identify numerous MBCTs commonly practised by a group of Malaysian cancer patients. Prayers specifically for health reasons and spiritual practices were somewhat common among patients. Viewing MBCTs, not as alternative but to complement conventional cancer therapies may help to address cancer patients' emotional and psychological needs.
    Study site: Oncology clinic, Hospital Pulau Pinang, Malaysia
    Matched MeSH terms: Self-Help Groups
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