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1.
Nutrients ; 16(7)2024 Mar 28.
Artigo em Inglês | MEDLINE | ID: mdl-38613021

RESUMO

There are numerous recognized benefits of breastfeeding; however, sociocultural, individual, and environmental factors influence its initiation and continuation, sometimes leading to breastfeeding rates that are lower than recommended by international guidelines. The aim of this study was to evaluate the effectiveness of a group intervention led by midwives supporting breastfeeding during the postpartum period in promoting exclusive breastfeeding, as well as to assess the impact of this intervention on perceived self-efficacy. This was a non-blind, multicentric, cluster-randomized controlled trial. Recruitment started October 2021, concluding May 2023. A total of 382 women from Andalusia (Spain) participated in the study. The results showed that at 4 months postpartum there was a higher prevalence of breastfeeding in the intervention group compared to formula feeding (p = 0.01), as well as a higher prevalence of exclusive breastfeeding (p = 0.03), and also at 6 months (p = 0.01). Perceived self-efficacy was similar in both groups for the first two months after delivery, which then remained stable until 4 months and decreased slightly at 6 months in both groups (p = 0.99). The intervention improved the average scores of perceived self-efficacy and indirectly caused higher rates of exclusive breastfeeding (p = 0.005). In conclusion, the midwife-led group intervention supporting breastfeeding proved to be effective at maintaining exclusive breastfeeding at 6 months postpartum and also at increasing perceived self-efficacy.


Assuntos
Aleitamento Materno , Serviços de Saúde , Feminino , Humanos , Cognição , Período Pós-Parto , Grupos de Autoajuda
2.
Nurs Health Sci ; 26(2): e13117, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38566413

RESUMO

Diabetes mellitus is a metabolic disease characterized by prolonged elevated blood glucose levels. Diabetes self-management education and support programs are widely used in western countries. The impact of social media education and support interventions such as a WhatsApp-based program and the nurses' role in supporting and implementing this self-management program unclear. Using a WhatsApp-based program, we evaluated the effects of a 6-week program in improving self-efficacy and education among people with type 2 diabetes mellitus in Saudi Arabia. Eligible participants (n = 80) were recruited with the support of nurses into a randomized controlled trial and randomly assigned into self-management intervention and control groups. The intervention group (n = 40) received the self-management program support and the usual care. The control group (n = 40) received only the usual care with nurses' support. Results from generalized estimating equation analysis showed a significant increase in self-efficacy, self-management, and education in the WhatsApp-based intervention support group compared with the control group at 6 and 12 weeks (follow-up). Implementing the program via social media improves self-efficacy. The use of social media platforms should be promoted for global diabetes management.


Assuntos
Diabetes Mellitus Tipo 2 , Autogestão , Humanos , Diabetes Mellitus Tipo 2/terapia , Grupos de Autoajuda , Autogestão/métodos , Comportamentos Relacionados com a Saúde , Autocuidado/métodos
3.
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
4.
Brain Impair ; 252024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38566292

RESUMO

Background Acoustic neuromas (ANs) are consistently associated with decreased quality of life (QOL) related to the physical and psychosocial impacts of symptoms experienced from the tumour and its treatment. This study explored patient-reported experiences of ANs in New Zealand, with a focus on the impact on QOL and the provision of information, support and services. Methods A mixed methods approach was taken, conducting an online community survey that included the Penn Acoustic Neuroma Quality of Life Scale (N = 52). Those who indicated interest were offered semi-structured interviews after the survey (N = 17), which were analysed using content analysis. Results A negative impact on QOL was found, highlighting five key themes in the experiences of people: (1) ongoing physical, social and psychological impacts; (2) information and support from the medical system; (3) autonomy and decision-making; (4) the importance of peer support; and (5) remaining positive - life goes on. Conclusions Our findings indicate areas for improvement that may benefit people's healthcare experience and QOL. Both quantitative and qualitative results identified gaps associated with person-centred care and the need for information, education, emotional support and access to services. Recommendations include a need for more information (verbal and written) during all stages of diagnosis and treatment, shared decision-making and increased access to allied health, including psychological services and support groups.


Assuntos
Neuroma Acústico , Humanos , Neuroma Acústico/terapia , Qualidade de Vida/psicologia , Grupos de Autoajuda , Nova Zelândia
5.
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
6.
BMJ Open ; 14(3): e081783, 2024 Mar 12.
Artigo em Inglês | MEDLINE | ID: mdl-38479741

RESUMO

OBJECTIVES: To analyse the content of letters written by female spouse primary caregivers of patients with glioblastoma multiforme (GBM), a devastating and terminal primary brain cancer, and give voice to their experiences for medical providers of patients with GBM. DESIGN: A qualitative study using reflexive thematic analysis of letters written by female spouses/life partners and primary caregivers of patients with GBM. PARTICIPANTS: 101 current or former female spouse primary caregivers of patients with GBM wrote letters to share with the medical community between July 2019 and August 2019. INCLUSION CRITERIA: (1) the primary caregiver who is a spouse of a patient with glioblastoma, (2) be a member of the secret Facebook group, 'We are the wives of GBM and this is our story', and (3) completed informed consent for the contents of their letter to be included for primary and secondary data analysis. Participants who wrote letters but did not complete the informed consent were excluded from the study. RESULTS: Themes from the letters included the patient experiences: (1) medical details of the disease trajectory, (2) interactions of the patient/caregiver dyads with healthcare and (3) the changing patient condition over time. Themes focused on the caregiver experiences: (1) caregiver challenges, (2) caregiver responses and (3) caregiver coping strategies, and description of tangible needs that would help other caregivers in the future. Caregiver needs were highest during the living with disease progression phase. Caregivers wanted more education and to be valued as members of the care team. CONCLUSION: Shared decision-making through family-centred care would be beneficial for primary caregivers of patients with GBM. These findings provide opportunities to guide more timely and tailored interventions to provide support and improve care for patient/caregiver dyads to help mitigate the burden of this progressive disease and improve quality of life for caregivers.


Assuntos
Glioblastoma , Mídias Sociais , Humanos , Feminino , Cônjuges , Cuidadores , Glioblastoma/terapia , Qualidade de Vida , Grupos de Autoajuda
7.
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
8.
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
9.
BMJ Open ; 14(3): e083489, 2024 Mar 20.
Artigo em Inglês | MEDLINE | ID: mdl-38508651

RESUMO

INTRODUCTION: Self-help is an important complement to medical rehabilitation for people with chronic diseases and disabilities. It contributes to stabilising rehabilitation success and further coping with disease and disability. Rehabilitation facilities are central in informing and referring patients to self-help groups. However, sustainable cooperation between rehabilitation and self-help, as can be achieved using the concept of self-help friendliness in healthcare, is rare, as is data on the cooperation situation. METHODS AND ANALYSIS: The KoReS study will examine self-help friendliness and cooperation between rehabilitation clinics and self-help associations in Germany, applying a sequential exploratory mixed-methods design. In the first qualitative phase, problem-centred interviews and focus groups are conducted with representatives of self-help-friendly rehabilitation clinics, members of their cooperating self-help groups and staff of self-help clearinghouses involved based on a purposeful sampling. Qualitative data collected will be analysed through content analysis using MAXQDA. The findings will serve to develop a questionnaire for a quantitative second phase. Cross-sectional online studies will survey staff responsible for self-help in rehabilitation clinics nationwide, representatives of self-help groups and staff of self-help clearinghouses. Quantitative data analysis with SPSS will include descriptive statistics, correlation, subgroup and multiple regression analyses. Additionally, a content analysis of rehabilitation clinics' websites will evaluate the visibility of self-help in their public relations. ETHICS AND DISSEMINATION: The University Medical Center Hamburg-Eppendorf Local Psychological Ethics Committee at the Center for Psychosocial Medicine granted ethical approval (reference number LPEK-0648; 10.07.2023). Informed consent will be obtained from all participants. Results dissemination will comprise various formats such as workshops, presentations, homepages and publications for the international scientific community, rehabilitation centres, self-help organisations and the general public in Germany. For relevant stakeholders, practical guides and recommendations to implement self-help friendliness will derive from the results to strengthen patient orientation and cooperation between rehabilitation and self-help to promote the sustainability of rehabilitation processes.


Assuntos
Projetos de Pesquisa , Grupos de Autoajuda , Humanos , Estudos Transversais , Doença Crônica , Grupos Focais , Alemanha
10.
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
11.
JAMA Dermatol ; 160(3): 358-360, 2024 Mar 01.
Artigo em Inglês | MEDLINE | ID: mdl-38324294

RESUMO

This cross-sectional study describes support group use and experience among patients with alopecia areata.


Assuntos
Alopecia em Áreas , Humanos , Grupos de Autoajuda
12.
MCN Am J Matern Child Nurs ; 49(2): 107-113, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38403909

RESUMO

PURPOSE: To explore new parents' experiences with web-based videoconferencing as a mechanism of offering postpartum virtual support groups. STUDY DESIGN AND METHODS: Virtual support sessions and individual interviews were conducted to explore participants' experiences with virtual postpartum groups. RESULTS: Thirty-seven parents participated in seven virtual support sessions and 19 participated in individual interviews. Participant narratives centered on perceptions of safety when engaging in virtual support groups. Tools within the virtual space (camera; mute) created a relational paradox which provided safeguards but also hindered the building of trust. Participants described negotiating the fear of harm and judgment within virtual spaces alongside feelings of security in connecting from the safety of their homes. CLINICAL IMPLICATIONS: The virtual environment provides a forum for new parents to access information and support and an avenue for engagement with maternal child nurses and care providers. Awareness of how parents perceive safety in the virtual environment is an important part of facilitating and structuring parent groups on videoconferencing platforms. Nurses should be familiar with videoconferencing technology and be able to guide parents. Experience facilitating virtual groups to ensure safety and security while providing needed support is a valuable nursing skill.


Assuntos
Pais , Grupos de Autoajuda , Criança , Feminino , Humanos , Período Pós-Parto , Comunicação por Videoconferência
13.
Int J Palliat Nurs ; 30(2): 66-78, 2024 Feb 02.
Artigo em Inglês | MEDLINE | ID: mdl-38407152

RESUMO

BACKGROUND: Brain tumours are the ninth most common cancer in the UK, and account for 3% of all new cancer cases. AIM: To understand the impact of living with a primary brain tumour and identify adjustments that patients make in order to cope with their condition. This also encomapsses the impact of interventions like support groups in terms of care and therapeutic value. METHODS: After ethical approval, a qualitative approach was employed, which set out to interview 11 adult patients living with primary brain tumours. The interviews were conducted face-to-face and were semi-structured interviews. Interview data were coded and thematic analysis used. FINDINGS: Four themes were developed, namely: adjustment; loss of independence; support; and health and symptoms. CONCLUSION: Living with a brain tumour leads to an inevitable adjustment to maintain day-to-day life. The findings suggest there are a number of adjustments that patients make to maintain some independence. Many people valued the support they received from support groups, while others felt that the support they received was inadequate. The mandatory loss of a driving licence for people in the UK was the most concerning. Its removal led to a loss of confidence and made them immediately dependent on others for travel. While support was provided, there was an apparent omission in the provision of psychological support. Oncology and palliative care nurses are in key positions to explore psychological concerns and offer tailored support.


Assuntos
Neoplasias Encefálicas , Enfermeiras Clínicas , Adulto , Humanos , Emoções , Oncologia , Grupos de Autoajuda
14.
Int J Yoga Therap ; 34(2024)2024 Feb 01.
Artigo em Inglês | MEDLINE | ID: mdl-38412056

RESUMO

Trauma Center Trauma-Sensitive Yoga (TCTSY) is an evidence-based yoga protocol and approach used for somatic trauma care. Seven women participated in a 12-week TCTSY-integrated peer support group for sexual violence survivors at a community rape crisis center. Three semi-structured interviews were conducted: interview 1 at 1-2 months post-group, interview 2 at 8-9 months post-group, and interview 3 at 24-33 months post-group. Thematic analysis was conducted following Clandinin and Connelly's three-dimensional space approach. Participants described themes related to improvements in trauma symptoms, mind-body connection, present-centered awareness, self-regulation, and relationships with self and others. Changes were sustained at the final interview. TCTSY-integrated peer support groups appeared feasible and acceptable to women victim-survivors of sexual violence.


Assuntos
Delitos Sexuais , Yoga , Humanos , Feminino , Estudos de Viabilidade , Sobreviventes , Grupos de Autoajuda
15.
Artigo em Inglês | MEDLINE | ID: mdl-38248525

RESUMO

People with Young Onset Dementia (YOD) can be hesitant to engage with online peer support. This work aims to explore (1) why people are hesitant to engage in online peer support, (2) how to get more people involved in online peer support, and (3) what makes online peer support work well. Nine interviews with people with YOD were conducted on MS Teams. Participants were recruited through purposive sampling. Data were analysed thematically. Reasons for being hesitant to engage with online peer support include being unsure what to expect and concerns about seeing others in more advanced stages of dementia. Additionally, it can be difficult to identify groups that suit one's needs and interests. Group facilitators of online peer support groups should provide a detailed description of their group so that people can better assess whether the group would suit them. The insights obtained from this study will be used to develop a Best Practice Guidance on online peer support for people with YOD. Moreover, the findings can be useful for further research exploring how to support people with dementia in general in accessing online health and social care services.


Assuntos
Demência , Grupos de Autoajuda , Humanos , Animais , Grupo Associado , Projetos de Pesquisa , Animais de Trabalho
16.
Clin Rheumatol ; 43(2): 725-732, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38212556

RESUMO

INTRODUCTION: Idiopathic inflammatory myopathies (IIM) are heterogeneous and complex, and routine consultation can be overwhelming for patients, or sometimes so rushed that patients feel unable to discuss their needs and wishes adequately. As a result, online patient support groups (PSGs) on social media platforms like Facebook may help provide them with information they are seeking, and the support of the patient community who are living with this condition. Our goal is to explore the current landscape of PSGs in IIM to discuss the future of such groups and their role in supporting patient-driven self-management of complex connective tissue diseases. METHODS: We investigated factors that influence engagement in publicly accessible support groups on Facebook for patients with myositis. We analysed posts from myositis-related Facebook groups and pages between July 10, 2022, and October 2022. Data were extracted from each post, including presentation format (text, picture, video or mixed media) and content type (news, personal feelings or information). To gauge the post's impact, we measured engagement metrics, such as likes, comments, shares and reactions. RESULTS: Nearly three-quarters of the groups were private. Among the open ones, most posts seem to comprise pictures with text. Notably, engagement levels were higher for multimedia posts, with the exception of comments in groups, where engagement was comparatively lower. In terms of content, the majority of posts fell under the 'personal' category, followed by 'information' and 'news' posts, with information posts in groups receiving the most interactions. Moreover, groups exhibited higher total engagement compared to pages when considering all posts cumulatively. CONCLUSIONS: Our observations indicate that patients with myositis seek information on the condition online, and the multimedia nature of content presentation significantly influences engagement. These digital forums serve as valuable platforms for fostering connections among diverse individuals, providing a perceived safe space for sharing their personal experiences and varied perspectives, and potentially mitigating social isolation. Key Points • Patient support groups on myositis are a key source of support and information for patients. • Public posts with multimedia content garner the most engagement. • The majority of posts are personal in nature, with a smaller proportion of content providing news or information.


Assuntos
Mídias Sociais , Humanos , Grupos de Autoajuda , Serviços de Saúde
17.
Psychiatry Res ; 332: 115683, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38218050

RESUMO

OBJECTIVE: This study examined associations between participation in virtual support groups for peripartum women and mental health outcomes at follow-up approximately 8 months later. METHODS: This cross-sectional online survey study assessed 383 women from the Perinatal Experiences and COVID-19 Effects (PEACE) study. Initial participants (T1) were re-contacted (T2) and self-reported mental health symptoms of depression (CES-D), anxiety (GAD-7), and COVID-related grief were assessed at both time points. Participants reported involvement in virtual support groups and their perception of the effectiveness of social media in addressing feelings of loneliness. RESULTS: The majority (62%) of respondents participated in a virtual support group, 99% of whom used informal social media-based groups (e.g. Facebook groups). At initial evaluation, virtual group participants reported higher levels of depressive symptoms (p=0.008) and COVID grief (p=0.004), but not higher levels of anxiety. Across the cohort, self-reported depressive, anxiety, and grief symptoms did not change significantly at follow-up in paired analysis, and virtual group participants did not demonstrate improvement in mental health symptoms. CONCLUSIONS: Participation in virtual support groups did not seem to improve mental health outcomes for peripartum women, and most women found social media engagement minimally effective at addressing loneliness.


Assuntos
COVID-19 , Período Periparto , Gravidez , Feminino , Humanos , Estudos Transversais , Pandemias , Ansiedade/epidemiologia , Grupos de Autoajuda , Avaliação de Resultados em Cuidados de Saúde , Depressão/epidemiologia
18.
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
19.
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
20.
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
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