Family Fellowship Society for Psychosocial Rehabilitation Services (1993-2019): A Self-help Movement.

Family Fellowship Society for Psychosocial Rehabilitation Services is an initiative of families of persons with mental illness and with psychiatric disabilities. It has been advocating self-help movement on the part of the families who have been on the lookout for alternative care services. This venture has been technically supported by the mental health professionals at National Institute of Mental Health and Neurosciences, Bangalore. It is a collaborative effort of families and professionals to address the needs that have been felt by the consumers and the professionals. It is the first of its kind in India. Over a period of 26 years, 150 + families have availed the alternative care for psychosocial rehabilitation services for their wards. In this context, an attempt was made to enlighten the psychosocial rehabilitation services at family fellowship society.

[Quality of life, disease burden and healthcare need of patients with vitiligo]. / Lebensqualität, Krankheitslast und Versorgungsbedarf von Patienten mit Vitiligo.

BACKGROUND: With a prevalence of 0.5-2%, vitiligo is one of the most common skin disorders worldwide with loss of pigment. The skin disease has a disfiguring, often stigmatising character and is often associated with psychosocial distress. OBJECTIVE: To provide an overview of the psychosocial impairment, disease burden and resulting health care needs of patients with vitiligo. MATERIALS AND METHODS: Narrative review based on a literature search in PubMed for the years 1996-2022 on disease burden, quality of life and stigmatization is provided. RESULTS: The search yielded 175 relevant original papers including clinical studies, meta-analyses and systematic reviews (n = 65) for the search period. A large number of studies document that vitiligo is associated with considerable psychosocial stress and relevant losses in quality of life. Problem areas particularly concern stigmatisation, sexual dysfunction, anxiety, reduced self-esteem and problems at work. The observed increased levels of anxiety and depression correlate with the severity and activity of vitiligo. Often, comorbidity also contributes to reduced self-esteem and social isolation. These factors determine a high need for care in a relevant proportion of those affected. CONCLUSION: Vitiligo is not primarily a cosmetic problem, but a disease requiring treatment according to the World Health Organisation's definition of health as physical, mental and social well-being. The benefits of treatment options are to be measured by their effects on patient-reported outcomes.

Equity and empowerment effects: Multiple styles of 'voluntarism' in community-based health projects.

Community health workers (CHW) are individuals with no formal health training who perform various roles to address health disparities. There are long-sustained debates over how different forms of incentives shape CHW programs, which are often staffed with volunteer or minimally remunerated women. These debates are complicated by the diversity of CHW roles and contexts in which they work. Evidence is particularly scant around "change-agent" style CHWs, who shape health knowledge and norms within their community. This paper addresses this gap through an analysis of a change agent-staffed program that provided nutrition participatory education through women's groups in three eastern Indian sites. We examine how contextual factors across sites shaped change-agent management, and analyze the implications of each approach for efficacy, empowerment, and equity. Analyzing 68 interviews and 10 focus groups this study advances a typology of 'varieties' of voluntarism that we name laissez faire, active-cultivation, and honorarium-accountability, and uses comparative analysis to examine the equity and empowerment effects within selection, management, and payment. First, we find tensions in the community-based selection of volunteers because rather than selecting highly motivated women, groups selected women in the most favorable socioeconomic position to volunteer. Second, there is a tension around responsibility and expectations in that greater training and responsibility leads women to see more psychosocial empowerment (e.g., knowledge, confidence), but also may create more 'costs' to participation and leads to wider economic inequities in change-agent ranks. Third, we observe a misplaced focus on payments as central to change-agent motivation. While the two volunteer-only sites see payment as 'the answer' to motivation problems, the honorarium site sees payments as 'the problem' because they attract less intrinsically motivated individuals. We conclude that while payments may not make an unmotivated volunteer into a motivated one, this analysis suggests payments would potentially allow more marginalized women to participate, which may be key to making more equitable and efficacious impacts.

Ethnicity, information and cooperation: Evidence from a group-based nutrition intervention.

Development programs often rely on locally hired agents for service delivery, especially for interventions promoting agricultural practices, health, and nutrition. These agents are key to reaching underserved communities, especially women, with information and services around recommended practices. However, where societies are socially stratified, differences in ethnic identities between agents and beneficiaries may impact the effectiveness of information and service delivery and the uptake of recommended behaviors. We explore the salience of shared ethnic identity between agents and beneficiaries in promoting collective action using a field experiment with women's self-help groups (SHGs) in India. We cross-randomize an information treatment and a group-agent shared ethnicity treatment at the SHG level. We measure impacts on individual group member information retention and willingness to contribute to a group-owned kitchen garden that could improve access to a diverse and nutritious diet. We find information retention is better when the group is matched with an agent lower in the ethnic hierarchy, but that agents higher in the hierarchy elicit greater individual contributions to the group-owned kitchen garden. We suggest some hypotheses for these seemingly contradictory results. Other characteristics like education, group cohesion and perceived agent ability also matter in changing knowledge and contribution. Our findings have important implications for effective program design and implementation, suggesting that implementers need to consider factors beyond the information content, target group and pedagogical mode of delivery for their strategies to be transformative.

Amyotrophic Lateral Sclerosis and Its Management during the COVID-19 Pandemic: A Qualitative Study with Thematic Analysis of Patients and Caregivers Who Participated in Self-Help Groups.

This study employs a qualitative methodology to explore the effects of the pandemic on the lives of ALS patients and their caregivers. It aims to understand whether and how online self-help groups have assisted families dealing with amyotrophic lateral sclerosis (ALS) patients. ALS is a neurodegenerative disease with both physical and psychosocial implications. Consequently, it significantly affects the lives of patients' caregivers. In 2020, the COVID-19 pandemic exacerbated this situation. The results show that the pandemic has had a negative impact on the well-being of ALS caregivers and patients. Furthermore, bereavement and death were dealt with in different ways by the families involved. The pandemic aggravated the health of ALS patients and increased the workload of their caregivers; however, online psychological support was appreciated for its role in providing emotional help and diminishing social isolation.

[Nonpharmacological treatment measures, rehabilitation services and membership in patient support groups in axial spondylarthritis (The ATTENTUS axSpA study)]. / Nichtmedikamentöse Therapiemaßnahmen, Rehabilitationsleistungen und Mitgliedschaft in Selbsthilfeorganisationen bei axialer Spondyloarthritis (Die ATTENTUS axSpA-Studie).

BACKGROUND: The treatment of axial spondylarthritis (axSpA) includes pharmacological treatment measures (PTM) and nonpharmacological treatment measures (NPTM) as well as supporting resources, such as rehabilitation services (RS) and membership in patient support groups (PSG). Nevertheless, there are significant participation restrictions in patients with axSpA in Germany. OBJECTIVE: Investigation of functional deficits, participation restrictions and utilization of PTM, NPTM, RS and PSG membership in patients with axSpA. MATERIAL AND METHODS: Multicentric, observational study of 770 axSpA patients in Germany (ATTENTUS-axSpA). RESULTS: Substantial functional deficits and participation restrictions were observed in axSpA patients. Of the patients 39% did not receive treatment with biological disease-modifying antirheumatic drugs (bDMARD). In the NPTM 54% received physiotherapy less than once per week and 29% once per week. Physical activities were regularly performed by 86% of patients, mainly in the form of home exercises. Training in a gym (14%) or sports club (7%) was carried out much less frequently. Of the patients 54% received RS, one third had the last rehabilitation more than 5 years ago and 13% of the patients were members in a PSG. A significantly higher utilization of NPTM and rehabilitation was found in this group. CONCLUSION: Treatment options and resources were often utilized to a small extent and/or in low intensity by axSpA patients, which could be a possible explanation for persisting restrictions of participation. Membership in a PSG was associated with an increased utilization of NPTM and RS.

Experiences of peer support activities and the need for a metaverse-based program in young women with breast cancer: A qualitative study.

Objective: This study aimed to explore young breast cancer survivors' experiences of peer support activities and their need for a metaverse-based peer support program. Methods: This qualitative content analysis study involved 15 young women with breast cancer under the age of 40. Participants with diverse experiences in peer support activities were purposefully selected. Data were collected in March 2023 through three focus group interviews and three additional individual interviews. Saturation was reached when no new themes emerged from the interviews. The interviews were transcribed verbatim and analyzed using conventional content analysis. This study ensured the trustworthiness of the data based on criteria including truth value, applicability, consistency, and neutrality. Results: Four categories emerged: advantages, disadvantages, preferences for peer support activities, and the need for metaverse-based peer support programs. Participants valued peer support activities for exchanging information, nurturing empathy, and encouraging healthy behaviors. Challenges included information confusion, peer conflict, isolation, and stigma. Preferences for group composition, size, and medium varied; however, all participants agreed on the importance of operational guidelines. Participants expected a metaverse-based peer support program to provide safe and enjoyable experiences despite concerns about unfamiliar platforms. Conclusions: This study highlights the unique needs and preferences of young breast cancer survivors regarding peer support activities. Well-organized and tailored peer support can significantly enhance their quality of life. These findings provide valuable insights for developing effective metaverse-based peer support programs to meet the needs of young women with breast cancer.

Grupo de apoio diante das necessidades da família do dependente químico / Support group for the needs of the chemical dependent's family

Objetivou-se identificar as necessidades dos participantes de um Grupo de Apoio à Família no tocante à convivência com o familiar dependente químico. Tratou-se de um estudo qualitativo, desenvolvido com seis familiares que frequentam o Grupo de Apoio à Família em um Centro de Atenção Psicossocial para usuários de Álcool e outras Drogas, em uma cidade do Sul do Brasil. Os dados foram coletados em junho de 2020, mediante entrevista semiestruturada; e, posteriormente, foram analisados por meio de análise temática de conteúdo. Após a observação, emergiram três categorias: Necessidades dos familiares em relação às perspectivas do Grupo de Apoio à Família; Vivência dos familiares em relação ao suporte do Grupo de Apoio à Família e Aspectos a serem reconsiderados no Grupo de Apoio à Família. Nesse contexto, o estudo possibilitou reflexões sobre a elaboração de estratégias mais efetivas a fim de proporcionar um processo terapêutico mais eficaz e resultados mais positivos.

The objective was to identify the needs of participants of a Family Support Group regarding coexistence with the family member who is chemically dependent. This was a qualitative study, developed with six family members who attend the Family Support Group in a Psychosocial Care Center for users of Alcohol and other Drugs in a city in southern Brazil. The data were collected in June 2020 in a semi-structured interview and subsequently analyzed through thematic content analysis. After observation, three categories emerged: Needs of family members in relation to the perspectives of the Family Support Group; Experience of family members in relation to the support of the Family Support Group; and Aspects to be reconsidered in the Family Support Group. In this context, the study enabled reflections on the development of more effective strategies in order to provide a more effective therapeutic process and more positive results.

Self-Help Groups within Nursing Homes: The Experiences of Family Caregivers in Northeastern Italy.

Older adults and their family caregivers experience nursing home placement as a particularly critical time of life. The present study explored the experiences of family caregivers of nursing home residents taking part in a self-help group for caregivers. The sample was composed of six caregivers of older adults residing in a nursing home in the northeast of Italy. The respondents, aged 57 to 71, were part of a self-help group set up by the facility between 2017 and 2019. In this qualitative methodological design, we applied the principles of interpretative phenomenological analysis. Two main themes emerged from the interviews: (a) challenges in constructing experience as caregivers; and (b) shared experiences as stabilizing tools. The findings highlight the importance of self-help groups in fostering the well-being of caregivers of older adults living in nursing homes. The self-help group enabled caregivers to deal with nursing home placement and the sense of guilt deriving from it; understand and accept the disabilities affecting their loved one; comprehend the experience of ambiguous loss; and learn to listen to their own needs, thus avoiding physical and emotional exhaustion.

Sobrecarga del cuidador de personas en diálisis y el significado de participar en un grupo de apoyo: estudio con metodología mixta / Caregiver burden of individuals on dialysis and the meaning of participating in a support group: a mixed-methods study

Introducción: El cuidador de la persona en diálisis requiere intervenciones específicas orientadas al cuidado de sí mismo. La intervención grupo de apoyo es una estrategia construida conjuntamente con personas que se enfrentan a los mismos problemas para compartir sus experiencias y brindarse apoyo mutuo a través de acciones planificadas. Objetivo: Caracterizar el cuidador de personas en diálisis, su sobrecarga y comprender los significados construidos por su participación en un grupo de apoyo.Materiales y Método: estudio de diseño mixto, descriptivo, participaron 68 cuidadores. La fase cuantitativa se realizó mediante los instrumentos: Ficha de caracterización de la díada persona con Enfermedad Crónica No Transmisible– cuidador familiar y La Escala de sobrecarga de Zarit; y la fase cualitativa con enfoque fenomenológico hermenéutico, se realizaron 8 entrevistas en profundidad.Resultados: La mayoría de cuidadores eran mujeres, con edad promedio de 49,4±13,5 años. Un alto porcentaje con bajo ni-vel socioeconómico y de escolaridad, su principal ocupación era el hogar. La mayoría estaba casada y profesaba la religión católica, llevaban 14 meses o más cuidando, sin experiencia previa y contaban con algún tipo de apoyo para realizar su tarea. Se identificó en ellos algún grado de sobrecarga. En el análisis de las entrevistas los temas emergentes fueron: aprenderse en el cuidado; encontrarse con comprensión y so-lidaridad; apoyarse en las necesidades; compartirse la dureza del cuidado; acompañarse en la espiritualidad; reorganizarse para seguir cuidando. Conclusiones: Los cuidadores viven en contextos que au-mentan la vulnerabilidad, para ellos el grupo de apoyo fue un espacio de soporte social, fuente de bienestar, acompaña-miento y apoyo desde el cuidado enfermero.(AU)

Introduction: The caregiver of a person on dialysis requires specific interventions aimed at self-care. Support group intervention is a strategy built in collaboration with ndividuals facing similar issues to share experiences and provide mutual support through planned actions.Objective: To characterize caregivers of individuals on dialysis, understand their burden, and comprehend the meanings constructed through their participation in a support group.Materials and Method: A mixed-methods descriptive study involving 68 caregivers was conducted. The quantitative phase utilized the instrument “Characterization Form of the Non-Communicable Chronic Disease-Patient Caregiver Dyad,” while the qualitative phase employed a hermeneutic phenomenological approach, consisting of 8 in-depth interviews.Results: The majority of caregivers were women, with an average age of 49.4±13.5 years. A high percentage had low socioeconomic status and education levels, with their main occupation being homemaking. Most were married and practiced the Catholic religion, had been providing care for 14 months or more, had no previous caregiving experience, and received some form of support to carry out their tasks. Some degree of burden was identified among them. The analysis of the interviews revealed emerging themes: learning through caregiving, finding understanding and solidarity, supporting each other’s needs, sharing the hardships of caregiving, accompanying each other in spirituality, and reorganizing to continue caregiving.Conclusions: Caregivers live in contexts that increase vulnerability, and for them, the support group provided a space for social support, well-being, accompaniment, and support from nursing care.(AU)

Coronavirus disease 2019 related parosmia: an exploratory survey of demographics and treatment strategies.

OBJECTIVE: To investigate the clinical features, therapeutic efficacy and symptom time course of post-coronavirus disease 2019 parosmia. METHODS: A 22-item online questionnaire was distributed to AbScent research group and Facebook coronavirus disease 2019 anosmia group adult members to assess clinical features, interventions and their subjective efficacy for parosmia. RESULTS: A total of 209 participants (86 per cent females) reported: smell loss on average 3 days after coronavirus symptoms, recovery 4 weeks later, and first parosmia symptoms 12 weeks post infection. Respondents reported 10 per cent body weight loss, and listed onion and garlic as significant parosmia triggers. Regarding quality of life, depression was the most cited item (54 per cent). Smell training was trialled by 74 per cent of participants, followed by nasal corticosteroid spray (49 per cent). Stellate ganglion block, trialled by 16 per cent of respondents, had the highest reported improvement (45 per cent), with 21 per cent reporting a sustained benefit - the highest rate amongst registered treatment options. CONCLUSION: Post-coronavirus parosmia has a significant impact and remains challenging to treat. Stellate ganglion block appears to be successful relative to other reported treatments. Further research into the pathophysiology, efficacy and mechanism of stellate ganglion block effect is warranted.

Peer-led recovery groups for people with psychosis in South Africa (PRIZE): protocol for a randomised controlled feasibility trial.

BACKGROUND: The available care for people with psychosis in South Africa is inadequate to support personal recovery. Group peer support interventions are a promising approach to foster recovery, but little is known about the preferences of service users, or the practical application of this care model, in low- and middle-income countries (LMIC). This study aims to assess the acceptability and feasibility of integrating peer-led recovery groups for people with psychosis and their caregivers in South Africa into existing systems of care, and to determine key parameters in preparation for a definitive trial. METHODS: The study is set in Nelson Mandela Bay Metropolitan district of the Eastern Cape Province, South Africa. The design is an individually randomised parallel group feasibility trial comparing recovery groups in addition to treatment as usual (TAU) with TAU alone in a 1:1 allocation ratio. We aim to recruit 100 isiXhosa-speaking people with psychosis and 100 linked caregivers. TAU comprises anti-psychotic medication-focused outpatient care. The intervention arm will comprise seven recovery groups, including service users and caregiver participants. Recovery groups will be delivered in two phases: a 2-month phase facilitated by an auxiliary social worker, then a 3-month peer-led phase. We will use mixed methods to evaluate the process and outcomes of the study. Intervention acceptability and feasibility (primary outcomes) will be assessed at 5 months post-intervention start using qualitative data collected from service users, caregivers, and auxiliary social workers, along with quantitative process indicators. Facilitator competence will be assessed with the GroupACT observational rating tool. Trial procedures will be assessed, including recruitment and retention rates, contamination, and validity of quantitative outcome measures. To explore potential effectiveness, quantitative outcome data (functioning, unmet needs, personal recovery, internalised stigma, health service use, medication adherence, and caregiver burden) will be collected at baseline, 2 months, and 5 months post-intervention start. DISCUSSION: This study will contribute to the sparse evidence on the acceptability and feasibility of peer-led and recovery-oriented interventions for people with psychosis in LMIC when integrated into existing care systems. Results from this feasibility trial will inform preparations for a definitive trial and subsequent larger-scale implementation. TRIAL REGISTRATION: Pan-African Clinical Trials Register PACTR202202482587686. Registered on 28 February 2022.  https://pactr.samrc.ac.za/TrialDisplay.aspx?TrialID=21496 .

Use of Complementary and Alternative Medicine in Patients with Autoimmune Bullous Dermatoses: A Cohort Study Analysis of a Rare Disease Group.

INTRODUCTION: Autoimmune bullous diseases (AIBD) are a heterogeneous group of rare autoantibody-mediated blistering dermatoses of the skin and/or mucous membranes. Their incidence is around 20 new cases per million inhabitants per year in Germany. Patients with chronic, oncological, or rare diseases often urge for a holistic therapeutic approach that includes complementary and alternative medicine (CAM). So far, only few contradictory reports on CAM in pemphigoid or pemphigus disease exist. The purpose of this study was to determine the frequency, motives, and satisfaction with the use of alternative treatments in patients with AIBD and to provide a basis for further investigation. METHODS: We used a structured online questionnaire, consisting of 20 questions to survey patients with AIBD and their relatives. The German pemphigus and pemphigoid self-help groups were responsible for distributing anonymized questionnaires. In total, we recovered 97 questionnaires, 63 of which met full inclusion criteria (24 males and 39 females). RESULTS: Of the included participants, more than half had a currently active disease. Of all patients, 58.7% stated that they had used CAM at least once. Women were more likely to use CAM, whereas age and education showed no association to CAM use. The main motives for using CAM were "doing something for oneself" and "opportunity to contribute to treatment" (38.1% each). The internet (23.8%) was the most common source of information, and vitamins were the most frequently used therapy (49.2%). CONCLUSION: Our results provide new insights into the demand for CAM within this rare disease patient group. Physicians should be aware of these methods to meet patient needs but also be able to identify potential barriers such as risks and interactions.

As vozes são muito mais que um sintoma / Las voces son mucho más que un síntoma (resumen: p. 15) / Voices are much more than a symptom

O Movimento Internacional de Ouvidores de Vozes, surgido nos anos 1980, entende o fenômeno de ouvir vozes não apenas como um sintoma, mas auxilia o desenvolvimento de estratégias para lidar com essas vozes. O objetivo deste estudo foi compreender como pessoas que participaram de grupos de ouvidores de vozes no SUS lidaram com tais experiências. Trata-se de uma pesquisa qualitativa, realizada em 2020, coletando dados de entrevistas em profundidade e diário de campo, examinados utilizando-se análise de conteúdo. Os participantes adultos (4) frequentaram o grupo por mais de um mês. Foi possível explorar as estratégias de enfrentamento individuais desenvolvidas pelas vivências de cada um com as suas vozes. O grupo também foi instrumento de socialização, por meio da normalização da experiência, de maior autoaceitação e de redução do estigma.(AU)

El Movimiento Internacional de Oidores de Voces, surgido en la década de 1980, entiende el fenómeno de oír voces no solo como un síntoma, sino que auxilia en el desarrollo de estrategias para enfrentarlas. El objetivo de este estudio fue comprender cómo personas que participaron en grupos de oidores de voces en el SUS enfrentaron tales experiencias. Se trata de una investigación cualitativa, realizada en 2020, con colecta de datos, a partir de entrevistas en profundidad y diario de campo, analizadas utilizándose análisis de contenido. Los participantes adultos (4) frecuentaron el grupo durante más de un mes. Fue posible explorar las estrategias de enfrentamiento individuales desarrolladas a partir de las vivencias de cada uno con sus voces. El grupo también fue un instrumento de socialización y, a partir de la normalización de la experiencia, de mayor autoaceptación y reducción del estigma.(AU)

Abstract The international Hearing Voices Movement, which emerged in the 1980s, understands the phenomenon of hearing voices not just as a symptom, but helps in the development of strategies to deal with these voices. The objective of this study was to understand how people who participated in groups of voice hearers in the Brazilian health system dealt with such experiences. This was a qualitative research study, carried out in 2020, with data collection from in-depth interviews and field diary, analyzed using content analysis. Adult participants (4) attended the group for more than a month. It was possible to explore the individual coping strategies developed from the experiences of each one with their voices. The group was also an instrument of socialization and, from the normalization of the experience, of greater self-acceptance and reduction of stigma.(AU)

Do members of cancer peer support groups know more about cancer than non-members? Results from a cross-sectional study in Germany.

PURPOSE: This study aims to assess whether cancer-specific knowledge (CSK) is associated with membership in a cancer peer support group (PSG) and other factors. METHODS: A cross-sectional study investigated the CSK of 1121 cancer patients of various entities across Germany. CSK was measured with the BCKS-14, a 14-item knowledge instrument which was previously participatory developed with patient representatives and oncologists. Associations between CSK and PSG membership, sociodemographic factors, internet use, and preferences in medical decision-making were analysed with t-tests and multiple linear regressions. RESULTS: The t-test showed a statistically significant difference in CSK between members and non-members of PSGs. Knowledge for PSG members was on average 0.97 points higher (p < 0.001) and varied between 2 and 14 points compared to 0-14 points for non-members. Regression analysis revealed age, gender, time since diagnosis, education, internet use, and PSG activity to be statistically significant predictors. Younger (ß = - 0.15; p < 0.001), female (ß = 0.10; p = 0.001), higher educated patients (ß = 0.27; p < 0.001) with and a diagnosis longer ago (ß = 0.10; p = 0.002) who use the internet frequently for information seeking (ß = 0.20; p ≤ 0.001) and members of cancer PSGs (ß = 0.18; p ≤ 0.001) showed a higher CSK. CONCLUSION: Overall, CSK of the participants shows a high degree of variance. CSK should be promoted for all patients and especially for older, newly diagnosed patients with low educational levels and PSGs introduced early on as they contribute to improving CSK among other benefits.

Percepción de la atención sanitaria en la primera experiencia de maternidad y paternidad / Perception of health care in the first experience of motherhood and fatherhood

Objetivo: Conocer las percepciones de madres y padres primerizas/os sobre la atención sanitaria recibida durante la transición hacia la maternidad y la paternidad.Método: Estudio cualitativo basado en 12 entrevistas semiestructuradas a siete mujeres que conformaron un grupo de autoayuda y cinco de sus parejas, en Segovia (2018-2019). Se realizó un análisis de contenido cualitativo.Resultados: Se identificaron cinco categorías: (1) atención sanitaria recibida durante la etapa prenatal; (2) atención sanitaria recibida durante el parto; (3) cuidados en el posparto dirigidos a las mujeres; (4) respuesta sanitaria durante la crianza; y (5) gestación y beneficios de un grupo de autoayuda. En el periodo prenatal precisaron recibir más información respecto al parto y el posparto, y una preparación que las/los apoyara en esta transición. En el parto se produjo un incumplimiento de expectativas respecto a la atención sanitaria recibida. En el posparto manifestaron la necesidad de un mayor seguimiento a las mujeres desde una perspectiva biopsicosocial. En las consultas pediátricas, se reportó la importancia de fomentar la participación de los padres. Las mujeres manifestaron que actualmente no existen prestaciones sanitarias que favorezcan el establecimiento de redes de apoyo y espacios seguros donde expresar sus sentimientos y emociones.Conclusiones: Es necesario reformular espacios ya existentes en el sistema sanitario, como las clases de preparación al parto y los grupos de apoyo a la lactancia materna, y a su vez implementar nuevas estrategias. Asimismo, es imprescindible reforzar la atención sanitaria integral y humanizada, que fomente la participación de los padres. (AU)

Objective: To explore the perceptions of new mothers and fathers about the health care received during the transition to parenthood.Method: Qualitative study based on 12 semi-structured interviews with seven women who conformed a self-help group, and five of their partners, in Segovia, Spain (2018–2019). A qualitative content analysis was used.Results: Five categories were identified: (1) health care received during the prenatal stage; (2) health care received during childbirth; (3) postpartum care for women; (4) health response during parenting; and (5) gestation and benefits of a self-help group. In the prenatal period they needed more information about childbirth and postpartum and preparation to support them in the transition to parenthood. In childbirth, there was a failure to meet expectations regarding the health care received. In the postpartum period, they expressed the need for greater follow-up of women from a biopsychosocial perspective. In pediatric visits, the importance of encouraging the participation of fathers was reported. Women stated that there are currently no health benefits that favor the establishment of support networks and safe spaces where they can express their feelings and emotions.Conclusions: It is necessary to reformulate existing spaces such as childbirth preparation classes and breastfeeding support groups, and to implement new strategies from the health care point of view. It is also essential to reinforce comprehensive, humanized health care that encourages parental involvement. (AU)

Impact of Self-Help Groups among Persons With Disabilities in Rural Karnataka - A Comparative, Cross-Sectional Study.

Background: The prime concern for an individual with disability is independence. Self-help groups (SHGs) provide opportunities for those with such needs. Objectives: The objectives of the study were (i) to assess the impact of SHGs on the livelihood, social inclusion, and community participation of those with disability and (ii) to evaluate the self-esteem and assess the role of such SHGs among those with disability. Materials and Methods: This was a community-based, cross-sectional study. An interview schedule captured responses to standardized questionnaires (community-based rehabilitation assessment tool, Rosenberg's self-esteem score, and Social Inclusion Scale). Responses were scored and compared among the two groups of those with disability (member or nonmember of SHGs). Results: The median scores for all our outcome variables were found to be more among those with disabilities enrolled in SHGs than those who were not with a significant association in the component of empowerment, sociocommunity participation, social inclusion, and self-esteem. Conclusion: SHGs improve social and community participation of individuals with disability. It empowers them to lead independent lives and also contributes to social inclusion.

[Structural Equation Modeling for Quality of Life of Mothers of Children with Developmental Disabilities: Focusing on the Self-Help Model].

PURPOSE: This study aimed to construct and test a predictive model for the quality of life (QOL) in mothers of children with developmental disabilities (DB). The hypothesized model included severity of illness, distress, uncertainty, self-help, and parenting efficacy as influencing factors, QOL as a consequence based on the Braden's Self-Help Model. METHODS: The data were collected through a direct and online surveys from 206 mothers in 8 locations, including welfare or daycare centers, developmental treatment centers, and The Parents' Coalition for the Disabled located in two provinces of Korea. Data were analysed using SPSS/WIN 23.0 and AMOS 21.0 program. RESULTS: The fit indices of the predictive model satisfied recommended levels; χ² = 165.79 (p < .001), normed χ² (χ²/df) = 2.44, RMR = .04, RMSEA= .08, GFI = .90, AGFI = .85, NFI = .91, TLI = .93, CFI = .95. Among the variables, distress (ß = - .46, p < .001), parenting efficacy (ß = .22, p < .001), and self-help (ß = .17, p = .018) had direct effects on QOL. Severity of illness (ß = - .61, p = .010) and uncertainty (ß = - .08, p = .014) showed indirect effects. The explanatory power of variables was 61.0%. CONCLUSION: The study results confirm the utility of Braden's Self-Help Model. They provide a theoretical basis for improving QOL in mothers of children with DB. Nursing intervention strategies that can relieve mothers' distress and uncertainty related to disease and enhance parenting efficacy and self-help behavior should be considered.

A Quasi-Experimental Evaluation of a Nutrition Behavior Change Intervention Delivered Through Women's Self-Help Groups in Rural India: Impacts on Maternal and Young Child Diets, Anthropometry, and Intermediate Outcomes.

Background: Women's self-help groups (SHGs) have become one of the largest institutional platforms serving the poor. Nutrition behavior change communication (BCC) interventions delivered through SHGs can improve maternal and child nutrition outcomes. Objectives: The objective was to understand the effects of a nutrition BCC intervention delivered through SHGs in rural India on intermediate outcomes and nutrition outcomes. Methods: We compared 16 matched blocks where communities were supported to form SHGs and improve livelihoods; 8 blocks received a 3-y nutrition intensive (NI) intervention with nutrition BCC, and agriculture- and rights-based information, facilitated by a trained female volunteer; another 8 blocks received standard activities (STD) to support savings/livelihoods. Repeated cross-sectional surveys of mother-child pairs were conducted in 2017-2018 (n = 1609 pairs) and 2019-2020 (n = 1841 pairs). We matched treatment groups over time and applied difference-in-difference regression models to estimate impacts on intermediate outcomes (knowledge, income, agriculture/livelihoods, rights, empowerment) and nutrition outcomes (child feeding, woman's diet, woman and child anthropometry). Analyses were repeated on households with ≥1 SHG member. Results: Forty percent of women were SHG members and 50% were from households with ≥1 SHG member. Only 10% of women in NI blocks had heard of intervention content at endline. Knowledge improved in both NI and STD groups. There was a positive NI impact on knowledge of timely introduction of animal-sourced foods to children (P < 0.05) but not on other intermediate outcomes. No impacts were observed for anthropometry or diet indicators except child animal-source food consumption (P < 0.01). In households with ≥1 SHG member, there was a positive NI impact on child unhealthy food consumption (P < 0.05). Conclusions: Limited impacts could be due to limited exposure or skills of volunteers, and a concurrent national nutrition campaign. Our findings add to a growing literature on SHG-based BCC interventions and the conditions necessary for their success.

Economies of scale of large-scale international development interventions: Evidence from self-help groups in India.

Livelihoods and microfinance programs for women often show reduced impacts after scale-up. Yet, program scale-up may reduce average per capita costs and maintain cost-effectiveness despite lower impact. This paper presents evidence on the association between program scale, costs, and cost-effectiveness by analyzing how the costs of a large-scale Self-Help Group (SHG) program in India changed from its inception in 2007 to its scale-up in 2019. We use expenditure data from program's audit statements of Jeevika - the Bihar Rural Livelihoods Promotion Society - and find that a 1% increase in program membership was associated with a 0.6% increase in annual program expenditures, indicating large economies of scale. Predicted costs from regressions suggest that the annual per capita program expenditures declined from $29 when the program covered 100,000 members to $5 when it reached 10 million members. Previous impact evaluations of Jeevika showed sizeable but smaller substitutions away from high-cost debt after scale-up than during the pilot, but we found that economies of scale led to similar cost-effectiveness ratios for this outcome. We also found that formation of higher-level federations is associated with lower marginal costs than setting up SHGs. However, previous evidence suggests that Jeevika did not generate average impacts on women's agency and asset ownership after scale-up. Building on a rich history of research on Jeevika, we argue that program implementers must identify key success factors in pilot programs to minimize tradeoffs between cost savings and potentially reduced impacts after scale-up. Further, we suggest investments in linking SHGs to federations to improve the cost-effectiveness of SHGs.