Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 10.638
Filtrar
1.
PLoS One ; 19(5): e0303568, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38753733

RESUMO

This study investigated health-related quality of life and identified factors affecting it among people with the HIV in South Korea. A total of 243 people living with HIV participated in this cross-sectional survey. Data were collected from five hospitals between November 2021 and August 2022 using structured online questionnaires. Data were analyzed using descriptive statistics, Mann-Whitney U test, Kruskal-Wallis test, Spearman's rho analysis, and Tobit regression analysis because a significant ceiling effect was observed for the dependent variable. The mean score for the health-related quality of life was 75.74 ± 16.48. The significant factors that positively influence the health-related quality of life were "employment" (B = 4.57, p = .035), "not participating in the self-help group" (B = 6.10, p = .004), "higher self-efficacy for managing symptoms" (B = 1.32, p = .036), "higher self-efficacy for getting support/help" (B = 0.95, p = .035), and "higher self-efficacy for managing fatigue" (B = 2.80, p < .001) in the Tobit regression analysis. The results suggest that interventions to increase self-efficacy should involve developing programs and policies for people living with HIV. There is a need for efforts to provide healthcare services linked to employment support, as well as to establish a social environment in which they can work without stigma. Further, self-help groups could be utilized as intervention channels.


Assuntos
Infecções por HIV , Qualidade de Vida , Humanos , Infecções por HIV/psicologia , República da Coreia/epidemiologia , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Estudos Transversais , Análise de Regressão , Inquéritos e Questionários , Autoeficácia , Grupos de Autoajuda
2.
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
3.
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
4.
Arch Dermatol Res ; 316(6): 294, 2024 May 31.
Artigo em Inglês | MEDLINE | ID: mdl-38819612

RESUMO

Dermatological conditions are one of the most common reasons for clinical visits. Not only can they have a profound effect on patients' cosmetic appearances, but they also have a notable impact on their self-esteem, confidence, and body image, ultimately causing psychological distress. As social networking platforms become the new public space for discussion, patients have transitioned from in-person support groups to seeking online advice, support, and guidance. We conducted queries across various social networking platforms to identify and analyze active social networking support groups for common dermatological conditions. Thirty-six online support groups were identified for the top four dermatological conditions with the highest disability-adjusted life years (DALYs). We analyzed, recorded, and categorized each group according to target dermatological condition, social networking platform, support group host, engagement rate, and content of posts. In the groups identified, the majority were patient-driven (88.89%). When evaluating the engagement activity and frequency, 77.78% (n = 28) of groups had daily posts and 22.22% (n = 8) posted weekly. Additionally, we discovered a notable feature among support groups on Facebook and Reddit being more interactive and collaborative. This underscores the importance of enabling patients with dermatological conditions to generate posts and engage in open discourse, rather than absorbing single-user generated content from other popular platforms. Understanding the current landscape of social networking support groups can aid clinicians in disseminating information and resources for patients to create communities with other patients.


Assuntos
Grupos de Autoajuda , Dermatopatias , Rede Social , Humanos , Dermatopatias/psicologia , Dermatopatias/terapia , Mídias Sociais/estatística & dados numéricos , Apoio Social , Redes Sociais Online
6.
Rev Peru Med Exp Salud Publica ; 41(1): 54-61, 2024 May 27.
Artigo em Espanhol, Inglês | MEDLINE | ID: mdl-38808845

RESUMO

OBJECTIVE: Motivation for the study. Filling a knowledge gap regarding support groups for caregivers of children with multiple disabilities. Main findings. Support groups are valuable spaces for social support and learning for caregivers of children with multiple disabilities. They facilitate resilience and coping strategies following the birth of a child with multiple disabilities. They promote the participation and empowerment of caregivers of children with multiple disabilities to address access barriers and advocate for the fundamental rights of children. Implications. It is important to promote and support support groups for caregivers of children with multiple disabilities. To explore the perceived benefits of participating in a support group of caregivers of children with multiple disabilities. MATERIALS AND METHODS.: A qualitative study with a focused ethnographic approach was conducted from October 2022 to February 2023, in which we applied convenience sampling. We included 20 caregivers of children with multiple disabilities. Information was collected through participant observation, focus groups, and semi-structured interviews. Thematic analysis was performed by applying Braun and Clark's proposals. RESULTS.: The emerging themes were: social support network: integrating, informing, and helping each other; learning space: learning to take care and to take care of oneself; promoting empowerment: identifying and facing access barriers. CONCLUSIONS.: We found that the support group functions as a social support network provides information, reduces uncertainty, and facilitates coping and resilience after the birth and upbringing of a child with multiple disabilities. It is a space where one learns to care for and take care of oneself and where empowerment for the defense of the rights of children with disabilities is promoted.


OBJETIVO.: Motivación para realizar el estudio. Llenar un vacío de conocimiento sobre los grupos de apoyo de cuidadoras de niños con discapacidad múltiple. Principales hallazgos. Los grupos de apoyo son espacios valiosos de apoyo social y aprendizaje para las cuidadoras de niños con discapacidad múltiple. Facilitan la resiliencia, el afrontamiento tras tener un niño con discapacidad múltiple. Favorecen la participación y empoderamiento de las cuidadoras de niños con discapacidad múltiple para enfrentar barreras de acceso y defender los derechos fundamentales de los niños. Implicancias. Es importante fomentar y respaldar los grupos de apoyo para cuidadoras de niños con discapacidad múltiple. Explorar la percepción de los beneficios de participar en un grupo de apoyo de cuidadoras de niños con discapacidad múltiple. MATERIALES Y MÉTODOS.: Estudio cualitativo, enfoque etnográfico focalizado, realizado de octubre del 2022 a febrero del 2023, muestreo por conveniencia, participaron 20 cuidadoras de niños con discapacidad múltiple. La información se recolectó mediante observación participante, grupos de discusión y entrevistas semiestructuradas. Se realizó análisis temático aplicando las propuestas por Braun y Clark. RESULTADOS.: Los temas emergentes fueron: red de apoyo social: integrarse, informarse y ayudarse mutuamente; espacio de aprendizaje: se aprende a cuidar y a cuidarse; promueve el empoderamiento: identificar y enfrentar barreras de acceso. CONCLUSIONES.: El grupo de apoyo funciona como una red de apoyo social, proporciona información, reduce la incertidumbre, facilita el afrontamiento y la resiliencia tras el nacimiento y crianza de un hijo con discapacidad múltiple. Espacio donde se aprende a cuidar y a cuidarse a sí mismo y donde se promueve el empoderamiento para la defensa de los derechos de los niños con discapacidad.


Assuntos
Cuidadores , Crianças com Deficiência , Pesquisa Qualitativa , Grupos de Autoajuda , Apoio Social , Humanos , Grupos de Autoajuda/organização & administração , Cuidadores/psicologia , Masculino , Feminino , Criança , Adulto , Pessoa de Meia-Idade , Adulto Jovem , Adaptação Psicológica , Grupos Focais , Pré-Escolar , Adolescente
7.
Aust J Prim Health ; 302024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38709900

RESUMO

Background Antidepressant use has continually increased in recent decades and although they are an effective treatment for moderate-to-severe depression, when there is no longer a clinical benefit, deprescribing should occur. Currently, routine deprescribing is not part of clinical practice and research shows that there has been an increase in antidepressant users seeking informal support online. This small scoping exercise used a mixed-methods online survey to investigate the motives antidepressant users have for joining social media deprescribing support groups, and what elements of the groups are most valuable to them. Methods Thirty members of two antidepressant deprescribing Facebook groups completed an online survey with quantitative and open-text response questions to determine participant characteristics and motivation for group membership. Quantitative data were analysed using descriptive statistics, and open-text responses were analysed thematically through NVivo. Results Two overarching themes were evident: first, clinician expertise , where participants repeatedly reported a perceived lack of skills around deprescribing by their clinician, not being included in shared decision-making about their treatment, and symptoms of withdrawal during deprescribing going unaddressed. Motivated by the lack of clinical support, peer support developed as the second theme. Here, people sought help online where they received education, knowledge sharing and lived experience guidance for tapering. The Facebook groups also provided validation and peer support, which motivated people to continue engaging with the group. Conclusions Antidepressant users who wish to cease their medication are increasingly subscribing to specialised online support groups due to the lack of information and support from clinicians. This study highlights the ongoing need for such support groups. Improved clinician understanding about the complexities of antidepressant deprescribing is needed to enable them to effectively engage in shared decision-making with their patients.


Assuntos
Antidepressivos , Desprescrições , Mídias Sociais , Humanos , Antidepressivos/uso terapêutico , Masculino , Feminino , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto , Grupos de Autoajuda , Idoso , Depressão/tratamento farmacológico , Apoio Social
8.
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
9.
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
10.
Artigo em Inglês | MEDLINE | ID: mdl-38673424

RESUMO

Posterior Cortical Atrophy (PCA) is a rare form of young-onset dementia that causes early visuospatial and visuoperceptual deficits. The symptom profile of Posterior Cortical Atrophy leads to very specific care needs for those affected, who often rely on informal caregivers (including friends and family). Rare dementia support groups can be useful for both patients and their caregivers to assist with knowledge sharing, psychoeducation, and the provision of psychosocial support. Despite this, few such support groups exist. The purpose of this study was to examine a PCA support group for caregivers of individuals living with PCA. We held a structured psychoeducation support group comprised of four sessions with the aim being to provide education, strategies for the management of the disease, and peer support. Caregivers' mental health and quality of life were assessed. The results of our study showed that support group participation was a positive experience and assisted with increasing the knowledge of caregivers and fostering social connections. We suggest that peer support groups may be beneficial for both people living with PCA and their caregivers. We recommend that future quantitative and qualitative research is conducted to further assess health-promotion benefits to people living with PCA and their caregivers, and to assess their development and implementation in different contexts.


Assuntos
Cuidadores , Estudos de Viabilidade , Grupo Associado , Qualidade de Vida , Humanos , Cuidadores/psicologia , Masculino , Feminino , Pessoa de Meia-Idade , Apoio Social , Idoso , Grupos de Autoajuda , Demência/enfermagem , Demência/psicologia , Austrália , Atrofia , Adulto
11.
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
12.
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
13.
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
14.
Oncol Res Treat ; 47(5): 177-188, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38461814

RESUMO

BACKGROUND: Self-help groups (SHGs) are an important cornerstone of the German health care system. Especially collaborations of SHGs with cancer centers enable active patient involvement in cancer care. We investigated the current situation and unmet needs of Bavarian SHGs in order to point out possible options of action. METHODS: We conducted a cross-sectional study with Bavarian psycho-oncological SHGs. Via e-mail, an online survey was sent to 150 SHGs registered at the BZKF (Bavarian Cancer Research Center). We assessed activities and needs of the SHGs as well as the nature of collaborations with cancer centers. We focused on adaptations during the COVID-19 pandemic and the inclusion of migrants. RESULTS: 46 (33.66%) SHGs participated, while 39 (84.78%) completed the questionnaire. During the COVID-19 pandemic, 50% of the SHGs reported less meetings. 22.7% changed to online meetings or other formats (43.2%). 20.9% of the SHGs had regular meetings with the cancer center, and 23.1% with the psycho-oncology. 51.2% evaluated the psycho-oncological services as neutral to dissatisfying due to lack of information, availability, and long waiting times. The SHGs indicated needs concerning interventions (coping strategies, digital applications, etc.), information, and better communication. Efforts for overcoming inequalities seemed rare: only 13.6% of the SHGs and 16.2% of the cancer centers had services for migrants. CONCLUSIONS: This study gave an overview of current activities and needs of Bavarian SHGs. The implementation of patient guides, comprehensive information material, and low-threshold psycho-oncological services should be objectives in future care to increase patient satisfaction. The needs for services for migrants should be investigated in more detail.


Assuntos
COVID-19 , Psico-Oncologia , Grupos de Autoajuda , Humanos , Alemanha , COVID-19/epidemiologia , COVID-19/psicologia , Estudos Transversais , Feminino , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Neoplasias/psicologia , SARS-CoV-2 , Inquéritos e Questionários , Adulto , Idoso
15.
Seizure ; 117: 229-234, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38507937

RESUMO

BACKGROUND: People with epilepsy have multiple barriers to recovering their quality of life. The objective of the present study was to determine the impact of a community group intervention focused on the components of mutual aid and human rights, to improve the quality of life in people with epilepsy. METHODS: Prospective quasi-experimental study, incorporating pre- and post-intervention evaluations. There were 102 people who underwent an intervention focused on the central components of mutual aid groups (Active agency, Coping strategies, Emotion recognition and management, Problem solving, Supportive interaction, Identity construction, Trust, and Social networks) and in the QualityRights strategy. As evaluation instruments, scales were used to determine quality of life (QOLIE-10), treatment adherence (Morisky Test), self-care behaviors, perception of disability and quality in the provision of health services. RESULTS: Correlations were shown between the variables proposed for quality of life. The intervention showed an improvement in all variables and a moderate to large effect in the self-care domain. There was a significant effect size in the self-care and quality of life variables with the intervention. Pharmacological adherence showed a moderate effect size in young people, adults and older adults. Regarding the perception of disability, the effect size was found only in adults. The pharmacological adherence variable also had a moderate effect size. This does specify the age groups, but not in the general sample. CONCLUSION: Seizure-free time constitutes a fundamental element in recovery. However, psychosocial conditions constitute key elements to achieve a better quality of life in people with epilepsy.


Assuntos
Epilepsia , Qualidade de Vida , Autocuidado , Grupos de Autoajuda , Humanos , Epilepsia/terapia , Epilepsia/psicologia , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Adulto Jovem , Direitos Humanos , Pessoas com Deficiência , Estudos Prospectivos , Idoso , Adolescente
16.
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
17.
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
18.
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
19.
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
20.
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
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA
...