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2.
Am J Med Genet A ; 194(3): e63450, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37861066

RESUMO

Rare diseases (RDs) are defined as diseases that affect a low number of the population. Prenatal diagnoses of RDs can add a lot of unique stress for parents. For example, parents who have prenatal diagnoses experience not only grief of expectation, but are forced to become patient advocates with incomplete information as their child is not yet born, and in many cases parents experience a lot of uncertainty. This typically involves seeking support groups and finding pre- and postnatal specialists all which come with mental and financial cost. Here we discuss the importance of targeted patient resources for parents to help alleviate some of their stress. Patient advocacy organizations can be incredibly useful for parents to navigate the complex healthcare system and help mitigate feelings of isolation, especially when parents can talk to others in a similar situation. We collaborated with a patient organization to create a prenatal parent support guide to address how parental needs such as mental well-being and practicing self-care can be met. We hope that resources such as these can help empower those with a pregnancy affected with a RD diagnosis.


Assuntos
Doenças Fetais , Doenças Raras , Feminino , Humanos , Gravidez , Pais , Diagnóstico Pré-Natal , Doenças Raras/diagnóstico , Grupos de Autoajuda
3.
Psychooncology ; 33(3): e6325, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38502044

RESUMO

OBJECTIVE: For young adults (YAs) with cancer, connecting with peer cancer survivors can provide a unique sense of community and may enhance post-traumatic growth (PTG). This study examined the relationship between connectedness to the YA cancer community and PTG among YAs, independent of overall social support. METHODS: Data were obtained from the young adults with cancer in their prime study, a cross-Canada survey of YA cancer survivors. Participants were stratified by level of social support into two groups (low/high). Multivariable logistic regression was used to examine the association between PTG and connectedness to the YA community adjusting for respondent characteristics, and the interaction between support and connectedness. RESULTS: Of 444 respondents, mean age was 34.2 (SD = 6.0), time-since-diagnosis was 4.8 years (SD = 5.4), and 87% were female. Over two-thirds of respondents (71%) reported feeling connected to the YA community. Level of connectedness to the YA community did not differ by social support group, and interaction between social support and connectedness to the YA community was not significant. In the adjusted regression, connectedness to the YA community (aOR = 2.29, 95% CI: 1.10-4.91), high social support (aOR = 2.98, 95% CI: 1.36-6.74), greater time-since-diagnosis (aOR = 1.09, 95% CI: 1.04-1.15) and female sex (aOR = 2.21, 95% CI: 1.23-4.04) were associated with greater odds of moderate-to-high PTG. CONCLUSIONS: Feeling connected to a community of YA cancer peers was associated with moderate-to-high PTG among YAs, independent of overall perceived social support. Future efforts should increase access to YA cancer communities and foster a sense of connectedness among YAs with cancer.


Assuntos
Neoplasias , Crescimento Psicológico Pós-Traumático , Humanos , Adulto Jovem , Feminino , Adulto , Masculino , Grupos de Autoajuda , Apoio Social , Canadá
4.
AIDS Behav ; 28(3): 1068-1076, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37889362

RESUMO

HIV-related stigma remains a significant barrier to implementing effective HIV treatment and prevention strategies in Nigeria. Despite the high uptake of peer support groups among people living with HIV (PLHIV) in Nigeria, the potential role of such peer support on the burden of internalized stigma remains understudied. To address this gap, we conducted a secondary analysis of the PLHIV Stigma Index 2.0, a socio-behavioral survey implemented by PLHIV led-organizations to assess the relationship between group membership and internalized stigma. Internalized stigma was measured using the Internalized AIDS-related Stigma Scale. Multinomial logistic regression was used to measure the association between self-reported engagement in peer support groups and internalized stigma adjusting for age, education, duration since HIV diagnosis, employment, disclosure status, and sex-work engagement. Of the 1,244 respondents in this study, 75.1% were engaged in HIV peer support groups. Over half (55.5%) and about one-fourth (27.3%) demonstrated low/moderate and high levels of internalized stigma, respectively. PLHIV engaged in HIV peer support groups were less likely to report both low/moderate (versus no) (adjusted odds ratio (aOR): 0.47 [95% CI: 0.27 to 0.81]; p = 0.006) and high (versus no) (aOR: 0.30 [95% CI: 0.17 to 0.53]; p < 0.001) levels of internalized stigma compared to those not engaged. In this study, the burden of internalized stigma is high among PLHIV in Nigeria. However, engagement in peer support groups appears to mitigate these stigmas. Stigma mitigation strategies to increase peer support may represent a critical tool in decreasing sustained HIV treatment gaps among PLHIV in Nigeria.


Assuntos
Infecções por HIV , Humanos , Infecções por HIV/tratamento farmacológico , Nigéria/epidemiologia , Estigma Social , Grupos de Autoajuda , Inquéritos e Questionários
5.
BMC Cardiovasc Disord ; 24(1): 40, 2024 Jan 11.
Artigo em Inglês | MEDLINE | ID: mdl-38212701

RESUMO

BACKGROUND: Implantable cardioverter defibrillators (ICD), as a gold and standard treatment for fatal cardiac arrhythmia, may lead to some physical and psychological problems for the patients. Therefore, performing some interventions to reduce or eliminate these issues is crucial. This study aimed to determine the effect of virtual interactive nurse-led support group intervention on fatigue, shock anxiety, and acceptance of ICD patients. METHODS: This is a clinical trial study on 72 patients with ICD. They were randomly allocated to the intervention (n = 36) and control (n = 36) groups. A virtual interactive nurse-led support group intervention through WhasApp was performed for one month. Multidimensional fatigue inventory, Florida Shock Anxiety Scale, and Florida Patient Acceptance Scale were used. Data were analyzed to perform the analysis of data through SPSS, using independent and paired-t test, Mann-Whitney U test, Wilcoxon test, and ANCOVA. RESULTS: Before the intervention, no significant difference was observed between the two groups with regard to fatigue, shock anxiety, and ICD acceptance. However, after the intervention, a significant difference was found between the two groups with regard to fatigue, shock anxiety, and ICD acceptance (P < 0.05). CONCLUSION: This study showed that virtual interactive nurse-led support group intervention reduced fatigue and shock anxiety and improved the ICD acceptance. PRACTICE IMPLICATIONS: This flexible, accessible, and interactive nurse-led support group intervention is suggested to be used for ICD patients. TRIAL REGISTRATION: This trial was registered and approved by Iranian Registry of Clinical Trials (Trial Id: 60,738, date: (24/02/2022). ( https://www.irct.ir/trial/60738 ).


Assuntos
Desfibriladores Implantáveis , Humanos , Desfibriladores Implantáveis/psicologia , Irã (Geográfico) , Papel do Profissional de Enfermagem , Qualidade de Vida/psicologia , Ansiedade/diagnóstico , Ansiedade/prevenção & controle , Grupos de Autoajuda , Fadiga
6.
Eur Arch Psychiatry Clin Neurosci ; 274(2): 375-422, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37755487

RESUMO

This paper offers a systematic review of quantitative and qualitative studies on the main twelve-step mutual-help (TSMH) groups (excluding Alcoholics Anonymous) and four meta-analyses exploring the correlation between (i) duration or involvement in TSMH groups and; (ii) severity of symptoms or quality of life. Systematic review was conducted following PRISMA guidelines. Searches of databases (MEDLINE, PsychInfo), a register (ClinicalTrials) and citations were conducted, from inception through November 01 2022. Fifty five articles were included (24 quantitative, 27 qualitative, 4 mixed-methods), corresponding to 47 distinctive studies. 68% of these studies were conducted in North America, 17% in Middle East, 11% in the European Union and 4% in Australia. The most studied TSMH group were Gamblers Anonymous (28% of the 47 studies), Narcotics Anonymous (26%), Double Trouble in Recovery (15%), Overeaters Anonymous (19%) and TSMH groups for compulsive sexual behaviors (11%). The four meta-analyses pooled data from 9 studies. Pooled mean age ranged from 36.5 to 40.5. 80-81% of participants were male. TSMH attendance and involvement were negatively correlated with severity of symptoms (high and medium levels of evidence) and positively correlated with quality of life (low levels of evidence). Twenty-one qualitative papers reported factors influencing recovery: Social (n = 15), emotional (n = 9), spiritual (n = 8), self-identification or psychological (n = 6) factors. Review provides characteristics of TSMH groups others than Alcoholics Anonymous, with implications for both research and healthcare practice. The perspective to implement TSMH groups targeting ontological addiction, at the root of all addiction, is discussed.Protocol registration: Prospero registration number: CRD42022342605.


Assuntos
Comportamento Aditivo , Grupos de Autoajuda , Humanos , Transtorno do Comportamento Sexual Compulsivo , Jogo de Azar , Qualidade de Vida
7.
Support Care Cancer ; 32(6): 351, 2024 May 15.
Artigo em Inglês | MEDLINE | ID: mdl-38748328

RESUMO

Since the emergence of scalp cooling therapy (SCT) for the prevention of chemotherapy-induced alopecia (CIA), support groups on social media platforms for interested patients have surfaced. Though there are over 20,000 active members across SCT Facebook groups, little is known about how members use this platform. A 23-question survey was posted in five scalp cooling Facebook groups, reaching 219 women. Results indicated that these Facebook groups play clear roles in providing the following: (1) a supportive community for patients, (2) instructions for SCT use, (3) advice regarding insurance coverage and reimbursement, and (4) recommendations for over-the-counter products for hair loss. Despite reported interest in hair loss products, only 5% of patients sought medical treatment from dermatologists. Due to group-specific access restrictions, private Facebook groups provide patients with a protected platform to learn more about SCT from both those with personal experience and SCT company specialists. Providers may consider recommending these online groups to interested patients during the scalp cooling counseling process. As patients with CIA express a growing interest in over-the-counter hair, eyebrow, and eyelash products, it is important for dermatologists to be aware of where their patients obtain recommendations, and further, if these recommendations have clinical evidence of efficacy.


Assuntos
Alopecia , Couro Cabeludo , Mídias Sociais , Humanos , Alopecia/prevenção & controle , Alopecia/terapia , Feminino , Inquéritos e Questionários , Adulto , Pessoa de Meia-Idade , Grupos de Autoajuda , Antineoplásicos/efeitos adversos , Antineoplásicos/administração & dosagem , Crioterapia/métodos , Idoso , Hipotermia Induzida/métodos
8.
BMC Psychiatry ; 24(1): 555, 2024 Aug 13.
Artigo em Inglês | MEDLINE | ID: mdl-39138435

RESUMO

BACKGROUND: Worldwide, peers support has been shown to play a crucial role in supporting people with mental illness in their personal recovery process and return to everyday life. Qualitiative studies underpinning the mechanisms of change in peer support has been reviewed. However, the findings are primeraly based on the perspectives of peer support workers employed in mental health services. Thus, qualitiative studies elucidating the mechanisms of change from the recipient perspective in mental health service independent civil society settings are higly needed to further contribute to the evidence of peer support. The 'Paths to every day life' (PEER) is evaluated in a randomized trial and is substantiated by qualitative studies investigating the experiences of PEER from the perspectives of the recipients and the facilitators of peer support. The purpose of this qualitative study underpinned by critical realism was to substantiate the PEER intervention program theory by gaining deeper insight into the change mechanisms and elaborate how, when, and under what circumstances the peer support groups potentially had or did not have an impact on personal recovery from the perspectives of the recipients of peer support. METHODS: Eleven individuals were interviewed at the end of the ten-week group course. The semi-structured realist-inspired interviews were audio recorded and transcribed verbatim. The analysis was guided by reflective thematic analysis and through an abductive framework based on the program theory. Data were coded and analysed in Nvivo software. RESULTS: Four overarching themes were identified that informed and nuanced the program theory: 1) Connectedness as a prerequisite for engagement; 2) A sense of hope by working out new paths to recovery; 3) Seeing new sides of oneself; and 4) Sprout for change. CONCLUSIONS: This study substantiates the program theory and the quantitative results of the PEER trial by elaborating on mechanisms that were felt to be essential for the personal recovery process from the perspectives of the recipients of the group-based peer support. In addition, the study points out that the opportunities to act in everyday life depended on individual context and where the group participants were on their recovery journey. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT04639167.


Assuntos
Transtornos Mentais , Grupo Associado , Pesquisa Qualitativa , Grupos de Autoajuda , Humanos , Transtornos Mentais/psicologia , Transtornos Mentais/terapia , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Apoio Social , Voluntários/psicologia
9.
BMC Psychiatry ; 24(1): 516, 2024 Jul 19.
Artigo em Inglês | MEDLINE | ID: mdl-39030505

RESUMO

BACKGROUND: Behavioral activation has gained increasing attention as an effective treatment for depression. However, the effectiveness of Behavioral Activation Group Therapy (BAGT) in controlled conditions compared to its self-help programs requires more investigation. The present study aimed to compare their effectiveness on depressive symptoms, repetitive negative thinking (RNT), and performance in patients with major depressive disorder (MDD). METHODS: In this randomized clinical trial, 40 patients diagnosed with Major Depressive Disorder (MDD) were recruited based on a structured clinical interview for DSM-5 (SCID-5). Participants were allocated to BAGT (n = 20) and self-help behavioral activation (SBA; n = 20) groups. BAGT received ten weekly sessions (90 min), while the SBA group followed the same protocol as the self-help intervention. Participants were evaluated at pre-treatment, post-treatment, and the 2-month follow-up using the Beck Depression Inventory-II (BDI-II), repetitive thinking questionnaire (RTQ-31), and work and social adjustment scale (WSAS). RESULTS: The results of a Mixed ANOVA analysis revealed that participants who underwent BAGT showed significant improvement in depression, rumination, work, and social functioning post-treatment and at the 2-month follow-up. However, the SBA group did not show significant changes in any outcome. The study also found that, based on clinical significance, 68% of the BAGT participants were responsive to treatment, and 31% achieved a high final performance status at the 2-month follow-up. DISCUSSION: BAGT was more effective than SBA in MDD patients. Participants' engagement with self-help treatment is discussed. TRIAL REGISTRATION: The present trial has been registered in the Iranian Registry of Clinical Trials Center (IRCT ID: IRCT20181128041782N1|| http://www.irct.ir/ ) (Registration Date: 04/03/2019).


Assuntos
Transtorno Depressivo Maior , Psicoterapia de Grupo , Humanos , Transtorno Depressivo Maior/terapia , Transtorno Depressivo Maior/psicologia , Feminino , Masculino , Adulto , Psicoterapia de Grupo/métodos , Pessoa de Meia-Idade , Resultado do Tratamento , Escalas de Graduação Psiquiátrica , Ruminação Cognitiva/fisiologia , Terapia Comportamental/métodos , Grupos de Autoajuda , Adulto Jovem
10.
BMC Psychiatry ; 24(1): 470, 2024 Jun 26.
Artigo em Inglês | MEDLINE | ID: mdl-38926661

RESUMO

BACKGROUND: The understanding that mental health recovery is a personal and subjective experience informs mental health policies in many countries. However, most of the populations in these studies are from the West, limiting their applicability in Asia. Peer support in mental health refers to helping and mentoring people who have overcome similar obstacles. Despite being proven to be effective in promoting recovery, little is known about its use in Malaysian psychiatric patients. This study aims to explore the participants' perspectives on their concept of recovery and how the peer support group (PSG) aid them to achieve recovery. METHODOLOGY: This study was conducted on clients with mental illness who attended the PSG provided by the Community Psychiatry and Psychosocial Intervention Unit in National University Malaysia Medical Centre. A qualitative generic inductive approach was employed in this thematic exploratory study. Purposive sampling was the method used to collect the data for this thematic exploratory study. In-depth interviews of 11 study participants were audio recorded and transcribed verbatim. Data were analyzed using Braun and Clarke (2006) descriptive thematic analysis method. RESULTS: The findings of this study highlighted six key themes; three pertaining to the participants' perspectives on the meaning of recovery (1. Gaining self-reliance and social inclusion, 2. Personal growth and improved life circumstances in recovery, and 3. Symptoms improvement) and another three pertaining to how the peer support group aids recovery (1. Empowerment and growth through peer support, 2. Promoting well-being, 3. Social connection and support). CONCLUSION: The findings of this study provide valuable insights into the perspectives of psychiatry clinic patients enrolled in PSG on the concept of recovery and the role of such groups in their recovery journey. The findings demonstrated that the PSG complemented the participants' perspectives on recovery, reinforcing the notion that a comprehensive and person-centered approach to mental health services is essential for successful and sustained recovery outcomes.


Assuntos
Transtornos Mentais , Grupo Associado , Pesquisa Qualitativa , Apoio Social , Centros de Atenção Terciária , Humanos , Malásia , Masculino , Transtornos Mentais/reabilitação , Transtornos Mentais/psicologia , Transtornos Mentais/terapia , Feminino , Adulto , Pessoa de Meia-Idade , Recuperação da Saúde Mental , Grupos de Autoajuda , Serviços de Saúde Mental , Adulto Jovem
11.
Eur J Pediatr ; 183(9): 3777-3783, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-38864876

RESUMO

Surgically repaired esophageal atresia (EA) is associated with chronic esophageal and respiratory morbidity that require ongoing management. The care of chronically ill children can exert considerable stress on parents, thereby potentially affecting their mental well-being. In response to this, disease-specific support groups have emerged with the aim to bring together individuals facing similar challenges, facilitating the exchange of experiences within a nurturing environment, and providing essential emotional support. In the context of this international collaborative study, we investigated the role played by EA-specific support groups in promoting the emotional well-being of EA families. An anonymous online survey was distributed through a network comprising 12 international EA support groups affiliated with the Federation of Esophageal Atresia and Tracheoesophageal Fistula (EAT) during May and August of 2022. In the study, 96 parents from 23 different countries completed the survey. Fifty-six percent indicated a lack of interaction with other EA families during the initial diagnosis, with 91% expressing the belief that such contact would have been beneficial. Participants exhibited a unanimous recognition of the critical role played by disease-specific support groups in navigating the emotional journey associated with EA.Conclusion: The findings of this global survey align with existing literature, reaffirming the beneficial impact of disease-specific support groups tailored for EA patients and their families on their emotional well-being. These groups provide a valuable platform for the exchange of personal experiences and narratives, delivering advantages to both those who share their stories and those who receive this valuable information.


Assuntos
Atresia Esofágica , Pais , Grupos de Autoajuda , Humanos , Atresia Esofágica/psicologia , Pais/psicologia , Feminino , Masculino , Inquéritos e Questionários , Recém-Nascido , Lactente , Adulto , Apoio Social
12.
Arch Phys Med Rehabil ; 105(5): 939-946.e3, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38242299

RESUMO

OBJECTIVE: To examine participants' experiences with peer-support after lower limb loss (LLL) and the associations between the peer-support experience (perceived benefits and barriers) and mobility outcomes. DESIGN: Quantitative and qualitative descriptive study with a cross-sectional design. SETTING: National survey (distributed to 169 peer-support groups in 44 states in the US). PARTICIPANTS: The survey was completed by 82 individuals with a major lower limb amputation (53% female, 54% over 55 years of age; N=82). MAIN OUTCOME MEASURES: A 32-item survey to examine respondents' experiences in peer-support activities. Prosthetic mobility was measured using the Prosthetic Limb Users Survey of Mobility (PLUS-M). RESULTS: Two out of 3 respondents received some forms of peer-support after amputation. Among them 75% reported peer-support having a positive effect on their outlook on life, and 78% reported that information gained from peer-support was helpful. Companionship, altruistic acts, and gaining information on how to cope with amputation were the top themes of why respondents enjoyed the peer-support experience. Nearly all (94%) respondents would recommend peer-support to other people with LLL. Individuals who received peer-support exhibited a trend of greater mobility (55th vs 36th percentile on PLUS-M; P=.055). CONCLUSION: Individuals with LLL reported generally positive experiences regarding their engagement in peer-support activities. Peer-support groups are viewed as a helpful source for both information and emotional support, potentially benefiting functional and psychological recovery after amputation. Individuals who have received peer-support also exhibited greater mobility.


Assuntos
Membros Artificiais , Extremidade Inferior , Grupo Associado , Apoio Social , Humanos , Feminino , Masculino , Pessoa de Meia-Idade , Estudos Transversais , Estados Unidos , Membros Artificiais/psicologia , Extremidade Inferior/cirurgia , Idoso , Adulto , Amputação Cirúrgica/reabilitação , Amputação Cirúrgica/psicologia , Amputados/reabilitação , Amputados/psicologia , Limitação da Mobilidade , Grupos de Autoajuda
13.
BMC Geriatr ; 24(1): 333, 2024 Apr 12.
Artigo em Inglês | MEDLINE | ID: mdl-38609838

RESUMO

BACKGROUND: Retirement and aging are phenomena that often occur simultaneously and lead to various physical and psychological changes in older adults. Retirement syndrome consists of symptoms such as feelings of emptiness, loneliness, uselessness, lack of clear understanding of future conditions and dissatisfaction with one's performance after retirement. This phenomenon requires interventions to adapt to these changes. Considering the supportive role of nurses, the formation of support groups as an effective intervention in adapting to transitional stages is emphasized. AIMS: This study aims to investigate the effect of older adults' participation in support groups on retirement syndrome. METHODS: This Quasi-experimental study recruited a total of 80 retired older adults meeting the inclusion criteria from three Retirement Associations (Retirement centers for social security retirees are among the institutions that have been set up by the government and this organization to provide face-to-face and offline services to social security retirees, as well as providing some facilities to this segment of the society). in Iran, Research samples were randomly assigned to two intervention and control groups. The demographic questionnaire and retirement syndrome questionnaire were completed by both groups at the beginning of the study. Then, four support group sessions lasting 60 to 90 min were held twice a week for the support group, and eight weeks after the end of the intervention, the questionnaires were completed for both groups. The data were analyzed using statistical tests in SPSS version 16. The significance level was set at p < 0.05 for all tests. RESULTS: The results of the covariance analysis showed that after the intervention, the feelings of helplessness and failure (p < 0.001), feelings of older and idleness (p = 0.027), and feelings of confusion and conflict (p = 0.002) were significantly less in the support group compared to the control group. In addition, the Feeling of trying and new direction (p < 0.001) was higher after the intervention. The paired t-test results showed that in the support group, the feelings of helplessness and failure (p < 0.001), feelings of older and idleness (p = 0.004), and feelings of confusion and conflict (p < 0.001) significantly decreased after the intervention compared to before it, while the feelings of trying and new direction (p = 0.004) significantly increased. Therefore, the results showed that after the intervention, there was a statistically significant difference between the two groups in all components of the retirement syndrome. CONCLUSION: The results of this study show that participation of retired older adults in support groups can significantly improve all components of retirement syndrome, leading to an improvement in their quality of life and satisfaction.


Assuntos
Qualidade de Vida , Aposentadoria , Idoso , Humanos , Confusão , Emoções , Serviços de Saúde , Grupos de Autoajuda
14.
Health Expect ; 27(3): e14082, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38783770

RESUMO

BACKGROUND: Gestational diabetes mellitus (GDM) affects a significant and growing proportion of pregnant women each year. The condition entails additional monitoring, self-management and healthcare use during pregnancy, and some women also join GDM support groups on Facebook. Little is known about the practices inside these groups, but examining them may elucidate support needs, women's experience of healthcare and improve overall outcomes. The aims of this study were to explore motivations for joining GDM Facebook groups and the perceived value and benefits of such spaces. DESIGN: A cross-sectional design using a web-based survey collected data from two peer-led GDM Facebook groups; relevant quantitative and qualitative data were extracted from open and closed questions, and analysed using descriptive statistics and content analysis. RESULTS: A total of 340 women responded to the survey, with 306 (90%) tendering their motivations to join a GDM Facebook group. Their answers were classified into six categories: peer support; information and practical advice; lived experiences; community; a safe place to ask questions and being recommended. The most commonly reported benefits of membership were 'reading about food ideas' and 'finding helpful information and tips'. Respondents reported finding their group strongly sympathetic, sincere, compassionate, heart-felt, tolerant, sensitive, warm and supportive. DISCUSSION AND CONCLUSIONS: GDM Facebook groups are valuable for informational and emotional support, and the sharing and perusal of lived experiences; another key benefit for women is feeling belonging to a community. GDM Facebook groups provide women with access to more tailored and readily available support, filling gaps not addressed by healthcare providers. PATIENT CONTRIBUTION: This study was led by a person with lived experience of GDM, and the survey was pilot tested with women who had also experienced GDM, which contributed to its development.


Assuntos
Diabetes Gestacional , Autogestão , Mídias Sociais , Humanos , Feminino , Diabetes Gestacional/terapia , Diabetes Gestacional/psicologia , Gravidez , Adulto , Estudos Transversais , Inquéritos e Questionários , Apoio Social , Motivação , Grupos de Autoajuda
15.
BMC Public Health ; 24(1): 670, 2024 Mar 02.
Artigo em Inglês | MEDLINE | ID: mdl-38429719

RESUMO

BACKGROUND: Carers of patients with advanced organ failure (AOF) experience a tremendous caregiving burden. Social capital utilizes the internal strength of a community to support its members and may provide carers with comprehensive support. This study aimed to identify the different sources of social capital that can support carers of patients with AOF from the perspectives of stakeholders. METHOD: A descriptive qualitative study was conducted in community settings from April 2021 to May 2022. Stakeholders from medical social work departments, self-help groups, and non-governmental organizations were recruited, while some community members were invited through online media platforms. Individual semi-structured interviews were conducted using an interview guide. Interview transcripts were analyzed using a qualitative description approach. In total, 98 stakeholders, including 25 carers, 25 patients, 24 professionals, and 24 community members, were recruited using purposive and snowball sampling. RESULTS: Six categories about social capital for carers emerged, namely, carer attributes, the community, social care services, healthcare services, information, and policies. While the attributes of carers and their relationships with care recipients had a significant influence on caregiving, support from different groups in the community, such as neighbors and employers, was valued. Good communication of information about caregiving and social services was emphasized as being helpful by carers and other stakeholders. While carers presented a need for various healthcare and social care services, several features of these services, including their person-centeredness and proactive reach, were deemed useful. At the societal level, policies and research on comprehensive supportive services are warranted. The different sources of social capital constitute a multi-layer support system in the community. CONCLUSION: Carers can utilize personal attributes, interpersonal relationships, community resources, and societal contexts to enhance their caregiving. While this system can serve as a framework for building carer-friendly communities, interventions may be required to strengthen some aspects of social capital.


Assuntos
Cuidadores , Capital Social , Humanos , Grupos de Autoajuda , Apoio Social , Serviço Social
16.
J Med Internet Res ; 26: e49440, 2024 Mar 15.
Artigo em Inglês | MEDLINE | ID: mdl-38488858

RESUMO

BACKGROUND: Pediatric stroke is relatively rare and underresearched, and there is little awareness of its occurrence in wider society. There is a paucity of literature on the effectiveness of interventions to improve rehabilitation and the services available to survivors. Access to online health communities through the internet may be a means of support for patients with pediatric stroke and their families during recovery; however, little research has been done in this area. OBJECTIVE: This study aims to identify the types of social support provided by an online peer support group to survivors of pediatric stroke and their families. METHODS: This was a qualitative thematic analysis of posts from a pediatric stroke population on a UK online stroke community active between 2004 and 2011. The population was split into 2 groups based on whether stroke survivors were aged ≤18 years or aged >18 years at the time of posting. The posts were read by 2 authors who used the adapted Social Support Behavior Code to analyze the types of social support exchanged. RESULTS: A total of 52 participants who experienced a pediatric stroke were identified, who posted a total of 425 messages to the community. About 41 survivors were aged ≤18 years at the time of posting and were written about by others (31/35 were mothers), while 11 were aged >18 years and were writing about themselves. Survivors and their families joined together in discussion threads. Support was offered and received by all participants, regardless of age. Of all 425 posts, 193 (45.4%) contained at least 1 instance of social support. All 5 types of social support were identified: informational, emotional, network, esteem support, and tangible aid. Informational and emotional support were most commonly exchanged. Emotional support was offered more often than informational support among participants aged ≤18 years at the time of posting; this finding was reversed in the group aged >18 years. Network support and esteem support were less commonly exchanged. Notably, the access subcategory of network support was not exchanged with the community. Tangible aid was the least commonly offered type of support. The exchanged social support provided insight into rehabilitation interventions and the unmet needs of pediatric stroke survivors. CONCLUSIONS: We found evidence of engagement of childhood stroke survivors and their families in an online stroke community, with peer support being exchanged between both long- and short-term survivors of pediatric stroke. Engagement of long-term survivors of pediatric stroke through the online community was key, as they were able to offer informational support from lived experience. Further interventional research is needed to assess health and rehabilitation outcomes from engagement with online support groups. Research is also needed to ensure safe, nurturing online communities.


Assuntos
Apoio Social , Acidente Vascular Cerebral , Feminino , Humanos , Criança , Grupos de Autoajuda , Acidente Vascular Cerebral/terapia , Sobreviventes , Rede Social , Internet
17.
Am J Drug Alcohol Abuse ; 50(3): 321-327, 2024 May 03.
Artigo em Inglês | MEDLINE | ID: mdl-38557160

RESUMO

Background: A Zoom-based website was developed in 2020 that offers continuous access to online Narcotics Anonymous (NA) meetings for the first time. This website provides immediate access for persons with substance use disorder to support abstinence from substance-related addictive disorders.Objectives: This study is designed to characterize attendees employing this online format; to evaluate their experiences for gaining support to maintain abstinence; and to compare the 24/7 experience to face-to-face (FF) meetings they attend.Methods: An anonymous 33-item survey was made available on the 24/7 NA website that links to the 24/7 meetings. Persons accessing the site could choose to fill out the survey.Results: 530 respondents completed the survey (64.9% female/35.1% male). Most had stable prior involvement in NA. They had attended more 24/7 meetings (14.9, SD 19.7) than FF meetings (4.6, SD 7.8) in the previous month. 86% had previously attended FF meetings, 48% had served as sponsors, and 92% reported that the 24/7 meetings were more comfortable for them than the FF meetings (p < .001, Cohen's d = 0.65) and more supportive of abstinence (p < .001, Cohen's d = 0.91). Of the respondents, 8% were still using drugs, of whom 52% had previously completed some of the Twelve Steps.Conclusions: The 24/7 format provides a new and easily accessible way for NA members to gain support for abstinence and is positively rated by attendees seeking support for recovery from substance use disorders. It may serve as a valuable adjunct to the traditional FF format.


Assuntos
Internet , Grupos de Autoajuda , Transtornos Relacionados ao Uso de Substâncias , Humanos , Masculino , Feminino , Adulto , Transtornos Relacionados ao Uso de Substâncias/terapia , Pessoa de Meia-Idade , Inquéritos e Questionários
18.
Child Care Health Dev ; 50(2): e13236, 2024 03.
Artigo em Inglês | MEDLINE | ID: mdl-38426583

RESUMO

Peer support groups can offer parents of children with disability, positive well-being outcomes. Peer support groups not only provide opportunities for connections with others with similar experiences but also provide resources and information, emotional support, a sense of belonging and may help reduce stress and isolation. Peer support groups are an established form of support existing within family centred practice. However, it is unclear whether peer support groups achieve the outcomes that they aim to deliver. Further, little is known about the longer-term outcomes for parents attending such groups. This study aimed to explore the medium- and long-term outcomes and experiences of parents who participated in a peer support programme (the Now and Next programme) for parents of children with disability. Well-being data were collected at three timepoints (Ts): prior to commencing the programme (T1), immediately after completion of the programme (T2) and 6-30 months after completion of the programme (T3). Results of the study showed empowerment and well-being improved from T1 to T2, with gains maintained at T3. Hope scores did not significantly change over time. Participants continued to set and achieve goals over time using resources from the programme. Improvements in parents' well-being and empowerment scores were maintained in the longer-term. Our study contributes to evidence confirming sustained long-term outcomes of peer support programmes and demonstrates that building parent capacity, empowerment and well-being has a lasting effect on the parents of children with disability.


Assuntos
Crianças com Deficiência , Criança , Humanos , Pais/psicologia , Austrália , Aconselhamento , Grupos de Autoajuda
19.
Qual Health Res ; 34(3): 217-226, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37997365

RESUMO

Postpartum depression (PPD) is a significant health issue for many new mothers in the weeks and months following a child's birth. Quantitative data suggest that a mother's PPD negatively impacts healthcare decision-making for the child via routine well-baby visits and pediatric care. However, little is known from a qualitative perspective about the factors that challenge or facilitate these healthcare decisions. The purpose of this descriptive qualitative study was to understand the perceptions of new mothers about factors contributing to their healthcare decision-making, for themselves and for their children, while living with PPD. The researchers used purposive sampling to recruit eight women from clinics, community organizations, and social media support groups who met the study's inclusion criteria. Individual semi-structured interviews were carried out with eight participants about their PPD experiences, motherhood, and healthcare decision-making influences. Transcribed interviews and initial themes were shared with participants to verify researcher interpretations and aid in the analysis process. The researchers analyzed interview data using thematic analysis to cultivate an understanding of the phenomenon by identifying and interpreting patterns in the data. Three primary themes were drawn from the data analysis: (1) Importance of Clinician Trust and Support; (2) Balancing the Health of the Mother and Child; and (3) Other Support Structures That Facilitate Healthcare Decision-Making for the Mother and Baby Dyad. Participant experiences underscored the need for cohesive approaches by clinical providers of pre- and postnatal care. Group model approaches to postnatal care appear to mitigate or reduce the impact of PPD.


Assuntos
Depressão Pós-Parto , Mães , Criança , Feminino , Humanos , Depressão Pós-Parto/terapia , Pesquisa Qualitativa , Grupos de Autoajuda , Atenção à Saúde , Período Pós-Parto
20.
Death Stud ; 48(2): 176-186, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37092540

RESUMO

Suicide can have a significant impact on the bereaved. Peer support groups for suicide bereavement have been shown to enhance the wellbeing of those attending. However, research is lacking on the mechanisms that underlie these benefits. Semi-structured interviews were conducted with 12 adults attending peer-facilitated support groups in Ireland and thematic analysis was used. The findings highlighted the enduring emotional impact including guilt and questioning, loss of identity, as well as wider impacts. Mechanisms of the groups included the opportunity to share experiences and feel validated, connection and belongingness and collective processing of grief. Groups were found to have a unique role alongside other informal and formal supports. This study highlights the important role of peer support groups in lessening this burden and adds to the literature through identifying potential mechanisms by which peer support groups contribute to improved wellbeing for the suicide-bereaved and practical steps to facilitate these mechanisms.


Assuntos
Luto , Suicídio , Adulto , Humanos , Pesar , Suicídio/psicologia , Grupos de Autoajuda , Culpa , Pesquisa Qualitativa
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