Experiences of family members when accompanying patients in intensive care units: A qualitative study.

BACKGROUND: Family members of Intensive Care Unit (ICU) patients encounter numerous challenges while providing companionship to their hospitalized loved ones. AIM: This study aims to explore the experiences of family members with loved ones hospitalized in ICUs. STUDY DESIGN: Qualitative research was conducted using a content analysis approach. Ten family members of ICU patients were recruited using purposive sampling. Data were collected through semi-structured, in-depth interviews and analysed following Graneheim and Lundman's suggested steps. FINDINGS: Analysis of interviews with ten family members of ICU patients revealed a theme of "challenging companionship on an obscure path," encompassing four categories (1-4) and nine subcategories (a, b and c). These included (1) the interplay between the patient and the family: a. family affected by the patient's condition; b. patient affected by the family's condition; (2) mixed emotions of apprehension and anticipation regarding ICU admission: a. fear of ICU hospitalization; b. hope for ICU hospitalization; (3) unaddressed needs and concerns: a. pressure from the ICU's visiting limitations; b. lack of a resting room to settle; c. vague information about the patient's condition; (4) two-way care suffering for families a. direct suffering associated with companionship; b. indirect suffering while observing the patients' suffering. CONCLUSIONS: Families of ICU patients encounter various challenges, revealing the complex interplay of emotions, needs and challenges within the ICU. This highlights the intricate dynamics in this critical health care environment. RELEVANCE TO CLINICAL PRACTICE: A holistic and empathetic approach in clinical practice is crucial in ICU care, particularly during the challenging journey patients and their families undergo in this critical setting. Health care systems and providers should adapt ICU rules to address evolving needs, alleviate concerns and enhance the overall family experience during their loved one's hospitalization in the ICU.

Predicting autism spectrum disorder using maternal risk factors: A multi-center machine learning study.

Autism spectrum disorder (ASD) is a neurodevelopmental disorder with a complex environmental etiology involving maternal risk factors, which have been combined with machine learning to predict ASD. However, limited studies have considered the factors throughout preconception, perinatal, and postnatal periods, and even fewer have been conducted in multi-center. In this study, five predictive models were developed using 57 maternal risk factors from a cohort across ten cities (ASD:1232, typically developing[TD]: 1090). The extreme gradient boosting model performed best, achieving an accuracy of 66.2 % on the external cohort from three cities (ASD:266, TD:353). The most important risk factors were identified as unstable emotions and lack of multivitamin supplementation using Shapley values. ASD risk scores were calculated based on predicted probabilities from the optimal model and divided into low, medium, and high-risk groups. The logistic analysis indicated that the high-risk group had a significantly increased risk of ASD compared to the low-risk group. Our study demonstrated the potential of machine learning models in predicting the risk for ASD based on maternal factors. The developed model provided insights into the maternal emotion and nutrition factors associated with ASD and highlighted the potential clinical applicability of the developed model in identifying high-risk populations.

Risk of Excess Maternal Folic Acid Supplementation in Offspring.

Folate, also known as vitamin B9, facilitates the transfer of methyl groups among molecules, which is crucial for amino acid metabolism and nucleotide synthesis. Adequate maternal folate supplementation has been widely acknowledged for its pivotal role in promoting cell proliferation and preventing neural tube defects. However, in the post-fortification era, there has been a rising concern regarding an excess maternal intake of folic acid (FA), the synthetic form of folate. In this review, we focused on recent advancements in understanding the influence of excess maternal FA intake on offspring. For human studies, we summarized findings from clinical trials investigating the effects of periconceptional FA intake on neurodevelopment and molecular-level changes in offspring. For studies using mouse models, we compiled the impact of high maternal FA supplementation on gene expression and behavioral changes in offspring. In summary, excessive maternal folate intake could potentially have adverse effects on offspring. Overall, we highlighted concerns regarding elevated maternal folate status in the population, providing a comprehensive perspective on the potential adverse effects of excessive maternal FA supplementation on offspring.

Family practice research in the African region 2020-2022.

BACKGROUND:  The African region produces a small proportion of all health research, including primary health care research. The SCOPUS database only lists the African Journal of Primary Health Care Family Medicine (PHCFM) and the South African Family Practice Journal (SAFP) in the field of family practice. AIM:  To review the nature of all original research (2020-2022) published in PHCFM and SAFP. SETTING:  African region. METHOD:  All 327 articles were included. Data were extracted into REDCap, using a standardised tool and exported to the Statistical Package for Social Sciences. RESULTS:  The median number of authors was 3 (interquartile range [IQR]: 2-4) and institutions and disciplines 1 (IQR: 1-2). Most authors were from South Africa (79.8%) and family medicine (45.3%) or public health (34.2%). Research focused on integrated health services (76.1%) and was mostly clinical (66.1%) or service delivery (37.9%). Clinical research addressed infectious diseases (23.4%), non-communicable diseases (24.6%) and maternal and women's health (19.4%). Service delivery research addressed the core functions of primary care (35.8%), particularly person-centredness and comprehensiveness. Research targeted adults and older adults (77.0%) as well as health promotion or disease prevention (38.5%) and treatment (30.9%). Almost all research was descriptive (73.7%), mostly surveys. CONCLUSION:  Future research should include community empowerment and multisectoral action. Within integrated health services, some areas need more attention, for example, children, palliative and rehabilitative care, continuity and coordination. Capacity building and support should enable larger, less-descriptive and more collaborative interdisciplinary studies with authors outside of South Africa.Contribution: The results highlight the strengths and weaknesses of family practice research in Africa.

Familial and Social Implications of Breast and Gynaecological cancer in Kerala, India.

BACKGROUND: Due to the paucity of reliable data to determine the components of family-based comprehensive care for cancer in India, we explored the familial implications of gynaecological and breast cancer diagnosis and treatment through a mixed-method study. METHODS: The mixed method study included 130 women aged above 18 with a confirmed diagnosis of gynaecological or breast cancer recruited from three selected tertiary hospitals in Kerala, India. Information on quality of life (36-Item Short Form Survey (SF-36)), psychological distress (distress thermometer), and the familial, interpersonal, social, and community impacts of cancer (semi-structured interview guide) were elicited. Linear regression was used to identify the factors associated with distress and the factors were explored further using thematic analysis. RESULTS: Patients included in the study (n = 130; mean age 57.5 years) had moderate or mild (66.9%) to severe (25.4%) distress. Concerns about work (93%), difficulty in; home care and housing (82%), care for dependents (65%), unempathetic family (87.6%), isolation (70%), and body image (65%) were major reasons for their distress. Physiological, social, and family-related stressors among the respondents included challenges in physical functioning, intense physical symptoms like fatigue, loss of appetite and sleep, role restrictions, alterations in family responsibilities, functional dependency, inadequate family support, challenges in social and interpersonal interactions, and an unsupportive work environment. CONCLUSION: Cancer is a health crisis that involves psychological, social, and economic distress, compelling professionals to design multifaceted individualized care packages rather than only concentrating on medical management to alleviate their distress.

NADA Acupuncture in Specialized Palliative Care: Patients' and Family Caregivers' Experiences.

CONTEXT: Over the last 30 years, non-pharmacological treatment with ear acupuncture, including National Acupuncture Detoxification Association (NADA) acupuncture, has become popular in Western society to relieve cancer-related symptoms. OBJECTIVES: This study aim is to explore whether NADA acupuncture plays a role in relieving suffering experienced by patients hospitalized in a specialized palliative care ward and their family caregivers and whether it contributes to their coping skills. METHODS: A qualitative study with a hermeneutic approach utilizing inductive thematic content analysis. Purposeful sampling took place in a specialized palliative care ward in Denmark and all data were collected through semi-structured interviews with patients and family caregivers as either individual or family interviews. RESULTS: A total of 10 patients and 15 family caregivers participated in interviews. Four themes emerged: (1) communication about treatment with NADA acupuncture, (2) relief of suffering generates extra energy and inner strength, (3) sharing the experience with the family is beneficial, and (4) physical and psychological effects after receiving NADA acupuncture. CONCLUSION: Patients in palliative care and their family caregivers experienced relief of suffering after receiving NADA acupuncture, as well as improved well-being, and extra energy and inner strength to cope with their life situation. The ability to share NADA acupuncture gave family caregivers the feeling of being cared for and contributed to feelings of fellowship and togetherness within the family, strengthening their ability to communicate and cope.

Music Therapy to Facilitate Relationship Completion at the End of Life: A Mixed-Methods Study.

The concept of relationship completion is embodied as the core belief for end-of-life care in Taiwan, known as the Four Expressions in Life. No studies have been published investigating and trying to understand how music therapy facilitates the Four Expressions in Life. This convergent mixed-methods study examined the effects of music therapy to facilitate relationship completion for patients at the end of life and their families in Taiwan, and explored their personal experiences in music therapy sessions. Thirty-four patients at end-of-life care and 36 of their family members participated in a single music therapy session with a one-group pretest-posttest design using standardized quality-of-life measures for patients at the end of life and families. A nested sample of 5 patients and 9 family members completed semi-structured interviews. Significant differences between the pre and post session scores were revealed for patients in the Life Completion subscale of the QUAL-E (p < .001), and the global QoL Indicator (p < .001), and for families in the Completion subscale of the QUAL-E (Fam) (p < .001), and the Overall Quality of Life (p < .001). Four themes around opportunities emerged from the interviews: the opportunity for exploration, for connection, for expression, and for healing. The integrated findings suggest that music therapy facilitated relationship completion and improved quality of life for both patients and their families. Furthermore, this study supports that the transformative level of music therapy practice within a single session for end-of-life care is attainable.

Cuidado ás pessoas com agravos endocrinos e metabólicos / Care for people with endocrine and metabolic problems

O objetivo desse trabalho é descrever a sistematização da Assistência de Enfermagem a pessoas com agravos endócrinos e metabólicos pautado na teoria de Calista Roy. Metodologia: Trata-se de um relato de experiência através da aplicação da Sistematização da Assistência de Enfermagem (SAE), voltado para pessoas com agravos endócrinos e metabólicos no contexto hospitalar. Resultados e discussão: Foi aplicado a teoria da adaptação nas seis fases da Teoria de Calista Roy e foi elaborado diagnósticos de enfermagem para os quatro modos de adaptação: fisiológico, interdependência, autoconceito e função de papel. Considerações finais: Ao aplicar a SAE no indivíduo com agravos endócrinos e metabólicos a enfermeira deve realizá-lo em todas as suas etapas, e utilizar os protocolos para oferecer um cuidado holístico e integral, visando a promoção da saúde, prevenção de risco potencial e adaptação diante das necessidades em saúde.(AU)

The aim of this study is to describe the systematization of nursing care for people with endocrine and metabolic disorders, based on Calista Roy's theory. Methodology: This is an experience report on the application of the Systematization of Nursing Care (SNC) to people with endocrine and metabolic disorders in a hospital setting. Results and discussion: The theory of adaptation was applied in the six phases of Calista Roy's theory and nursing diagnoses were drawn up for the four modes of adaptation: physiological, interdependence, self-concept and role function. Final considerations: When applying the SNC to individuals with endocrine and metabolic disorders, the nurse must carry it out in all its stages, and use the protocols to offer holistic and comprehensive care, aimed at promoting health, preventing potential risks and adapting to health needs.(AU)

El objetivo de este estudio es describir la sistematización de los cuidados de enfermería a personas con trastornos endocrinos y metabólicos, basándose en la teoría de Calista Roy. Metodología: Se trata de un informe de experiencia sobre la aplicación de la Sistematización de los Cuidados de Enfermería (SNC) a personas con trastornos endocrinos y metabólicos en un entorno hospitalario. Resultados y discusión: Se aplicó la teoría de la adaptación en las seis fases de la teoría de Calista Roy y se elaboraron diagnósticos de enfermería para los cuatro modos de adaptación: fisiológica, interdependencia, autoconcepto y función de rol. Consideraciones finales: Al aplicar el SNC a individuos con trastornos endocrinos y metabólicos, la enfermera debe llevarlo a cabo en todas sus fases, y utilizar los protocolos para ofrecer cuidados holísticos e integrales, dirigidos a promover la salud, prevenir riesgos potenciales y adaptarse a las necesidades de salud.(AU)

Care quality and satisfaction at the cancer hospital - a questionnaire study of older patients with cancer and their family members.

BACKGROUND: The unique life situations of older patients with cancer and their family members requires that health care professionals take a holistic approach to achieve quality care. The aim of this study was to assess the perceptions of older patients with cancer and family members about the quality of care received and evaluate differences between their perceptions. A further aim was to examine which factors explain patients' and family members' levels of satisfaction with the care received. METHODS: The study was descriptive and cross-sectional in design. Data were collected from patients (n = 81) and their family members (n = 65) on four wards in a cancer hospital, using the Revised Humane Caring Scale (RHCS). Data were analysed using descriptive statistics, crosstabulation, Wilcoxon signed rank test, and multivariable Analysis of Covariance (ANCOVA). RESULTS: Family members had more negative perceptions of the quality of care than patients did. Dissatisfaction was related to professional practice (p < 0.001), interaction between patient and health care professionals (p < 0.001), cognition of physical needs (p = 0.024), and human resources (p < 0.001). Satisfaction with overall care was significantly lower among those patients and family members who perceived that they had not been involved in setting clear goals for the patient's care with staff (p = 0.002). CONCLUSIONS: It is important that older patients with cancer and family members receive friendly, respectful, individual care based on their needs and hopes, and that they can rely on professionals. Health care professionals need more resources and education about caring for older cancer patients to provide quality care.

The Social Ecology of Caregiving: Applying the Social-Ecological Model across the Life Course.

Family caregivers provide care to people with disabilities, as well as ill and older adults, often with little to no outside assistance from the formal long-term care system. They are the backbone of long-term care, and it is a misconception that the majority of people institutionalize disabled people and older adults in the United States. Youth caregiving is under-examined in the field of public health and is in need of theoretical and practical attention. Building upon the work of Talley and Crews and Bronfenbrenner, we aim to broaden the scope of the discussion around caregiving through the application of the social-ecological model (SEM) to inform research and practice. This paper picks up where they left off, digging deeper into the ecological model to reimagine research, policy, and practices related to youth and young adult caregivers that are rooted in this framework. This application highlights care as embedded in social relations while allowing for an exploration of the ways structural barriers impact the caring unit. Looking holistically at the unit, rather than individuals as service users, provides an opportunity for understanding the interconnectedness of those giving and receiving care. It does so by rendering visible the interdependence of the caring unit, and the myriad structures, which bear down on care at the individual and household levels. This approach runs counter to dominant thinking, which focuses exclusively on the individuals involved in caregiving relationships, rather than considering them as interdependent units of care. This paper provides an analytic contribution, utilizing a narrative composite vignette based on literature and previous research.

A Qualitative Study on Psychosocial Challenges of Patients With Cancer in Ethiopia Using the Social-Ecological Model.

Cancer diagnosis and treatment can be physically arduous, disrupting patients' social and work lives. Understanding the extent of these problems is key to addressing patients' needs, but specific psychosocial challenges have not yet been well studied in resource-limited settings. A qualitative study was conducted in the capital and two regions of Ethiopia with the aim of exploring psychosocial challenges among cancer patients. A total of 14 in-depth interviews (IDIs) and 16 focus group discussions (FGDs) were done with cancer patients, health professionals, community representatives, and religious leaders. Four separate interview guides were used to facilitate the interviews and discussions. All transcribed documents, field notes, and reflexive memos were entered into NVivo 12 software, and deductive thematic analysis using the social-ecological model was applied to summarize the main findings. At an individual level, emotional distress, suicidal risk, denial, and refusal of treatment were identified immediately after diagnosis while hopelessness, feeling depressed, and fear of death were commonly reported psychosocial challenges during the course of treatment. Involvement of family members in major treatment decisions was recognized at an interpersonal level. Our result also revealed that cancer patients had strong social support from family members and close friends. In the community, traditional medicine and religious rituals were considered an alternative treatment for cancer. The findings indicate that counselling and psychoeducation are crucial for cancer patients, family members, and close friends. Awareness creation programmes should be delivered through collaboration with religious leaders and traditional healers.

Experiences of family members of cancer patients in palliative care: a qualitative systematic review protocol.

OBJECTIVE: The objective of this review is to synthesize the experiences of family members of cancer patients in palliative care. INTRODUCTION: Increasingly, palliative care is the approach advocated when a life-threatening illness has been diagnosed. Cancer patients and their families, when receiving early identification, correct assessment, and treatment of pain and other problems through palliative care, report feeling supported in their illness experience. The patients and their families also describe immediate and personalized symptom management, holistic support, decision-making guidance, and preparation for the future, including the dying process and stages of grief. A growing number of studies address palliative care patients and, in particular, the central role of family in this approach. This review will synthesize qualitative research on this subject, providing recommendations to health professionals to help them better understand the experiences and needs of family members of cancer patients receiving palliative care. INCLUSION CRITERIA: The review will consider studies examining experiences of families of cancer patients in palliative care, in all types of settings and contexts. The studies will focus on qualitative data, including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research, qualitative descriptive, and mixed methods studies. METHODS: The review will follow the JBI methodology for systematic reviews of qualitative evidence. The search strategy will aim to locate both published and unpublished studies, in any language, with no date restrictions. Methodological quality will be evaluated using the standard JBI critical appraisal checklist for qualitative research. The findings will be pooled using the meta-aggregation approach or will be presented in narrative format. The final synthesized findings will be graded according to the ConQual approach. REVIEW REGISTRATION: PROSPERO CRD42022333937.

Better spiritual support for people living with early stage dementia: Developing the diamond conversation model.

BACKGROUND: People with early-stage dementia could benefit greatly from on-going spiritual support. However, health care professionals working in dementia care often do not have a clear idea of what such support might entail. There is a lack of tools that can help professionals provide such support. The Diamond conversation model used in palliative care could provide such a support. Aims: To develop the Diamond model for early-stage dementia so that professionals can provide better spiritual support. METHODS: Participatory research was conducted. Reflective interviews with chaplains, case managers and health psychologists identified frequently occurring existential and spiritual issues of clients and family members. A core participatory group consisting of chaplains, a psychologist and a researcher further analysed these issues thematically and co-developed the Diamond model for early stage dementia over three co-creation sessions. Researchers with Diamond model expertise provided feedback to the core participatory group in between these sessions based on the session output. FINDINGS: Central existential and spiritual issues were found to be: self-confidence and -worth, adaptability and capacity, security and loss, burden and enrichment of memory and faith and meaning. The five polarities of the Diamond model were found helpful to understand tensions surrounding these issues. Specific tensions were identified between maintaining a self and being valued, finding direction in what to do and a way to bear changes in ability, a strong need for attachment and letting go of past ways to relate to one another, the renewed intensity of long term memories and decline of the short term ones and surrendering to one's life situation and wanting certainty and meaning. CONCLUSIONS: The newly developed Diamond model for people with early-stage dementia offers a valuable framework to help professionals provide conversational support. More research needs to be done to further test and develop the model in practice.

Association of Prenatal Maternal and Infant Vitamin D Supplementation with Offspring Asthma.

Rationale: The role and timing of vitamin D supplementation in the prevention of asthma has not been fully elucidated. Objective: To describe the association between prenatal and postnatal vitamin D with offspring asthma outcomes in participants of the Vitamin D Antenatal Asthma Reduction Trial. Methods: We classified 748 mother-offspring pairs into four groups based on the mother's randomization to receive high-dose versus low-dose (4,400 IU vs. 400 IU) vitamin D supplementation during pregnancy and the offspring parent-reported high-dose versus low-dose (⩾400 IU vs. <400 IU) vitamin D supplementation as estimated by intake of vitamin D drops or infant formula. We used logistic regression to test the association of the four vitamin D exposure groups-"mother-low/infant-low (reference)," "mother-high/infant-high," "mother-high/infant-low," and "mother-low/infant-high"-with offspring asthma and/or recurrent wheeze at age 3 years, active asthma at age 6 years, and atopic asthma at age 6 years. Results: The risk of asthma and/or recurrent wheeze at 3 years was lowest in the mother-high/infant-low group (adjusted odds ratio vs. mother-low/infant-low, 0.39; 95% confidence interval, 0.16-0.88, P = 0.03). When stratifying by history of exclusive breastfeeding until age 4 months, the protective effect in the mother-high/infant-low group was seen only among exclusively breastfed infants (odds ratio vs. mother-low/infant-low, 0.19; 95% confidence interval, 0.04-0.68; P = 0.02). We did not observe any significant associations with active or atopic asthma at age 6 years. Conclusions: We observe that high-dose prenatal and low-dose postnatal vitamin D supplementation may be associated with reduced offspring asthma or recurrent wheeze by age 3 years, but this association may be confounded by the protective effect of breastfeeding.

Cultural Influences on Making Nutritional Adjustments in Type 2 Diabetes in Pakistan: The Perspectives of People Living With Diabetes and Their Family Members.

In Pakistan, type 2 diabetes is widespread, and although dietary recommendations from healthcare professionals are critical to its treatment, cultural norms can have a great influence on the dietary habits of people living with diabetes (PLwD). Understanding the social aspects of the lives of PLwD is crucial when examining the effectiveness of nutritional recommendations and adjustments. This study investigated (1) how PLwD and their family members adjust their nutrition to the recommendations of healthcare professionals to manage type 2 diabetes mellitus (T2DM) and (2) what do PLwD and their family members perceive as enablers and barriers to the necessary nutritional adjustments for managing T2DM. Prime consideration was given to experiences of living in Pakistan as the cultural context. Semi-structured interviews were conducted with 30 PLwD and 17 family members; the data were analysed thematically. Three themes emerged: (i) 'Influence of family system, gender, and age on meals prepared at home': family hierarchy and opinions based on gender and age can enable or hinder nutritional adjustment in meals prepared at home; (ii) 'Temptations of "unhealthy" foods, festivals, cultural interactions, and social etiquette': family/social interactions at home, gatherings, or festivities can affect PLwD's ability to resist temptations to eat foods prohibited by healthcare professionals; and (iii) 'Folk knowledge, folk remedy, and the balance between culture and Western medicine': PLwD and their family members in Pakistan hold strong beliefs concerning foods' medicinal properties. Power dynamics within families need to be considered when making nutritional recommendations. Medical guidelines should acknowledge personal agency and cultural beliefs.

Significados atribuídos por mulheres com câncer de mama ao grupo de apoio / Meanings attributed by women with breast cancer to a support group / Significados atribuidos por las mujeres con cáncer de mama al grupo de apoyo

A sobrevivência ao câncer de mama é um problema de saúde pública que demanda serviços especializados com foco na reabilitação psicossocial. Entre as necessidades identificadas nesse contexto está o incentivo à adoção de estratégias de promoção de autocuidados pelas mulheres. Uma das estratégias adotadas consiste no grupo de apoio psicológico, que auxilia as pacientes a enfrentar a longa jornada do tratamento. Assim, o objetivo deste estudo é compreender os significados produzidos por mulheres com câncer de mama sobre sua participação em um grupo de apoio. Trata-se de um estudo qualitativo, descritivo e exploratório realizado com dez mulheres com câncer de mama usuárias de um serviço de reabilitação para mastectomizadas. Como referencial metodológico foi utilizada a Teoria Fundamentada nos Dados. A coleta de dados foi realizada por meio de entrevista aberta em profundidade e os conteúdos foram transcritos e codificados. A análise indutiva e o método de comparação constante foram aplicados nos processos de codificação aberta, axial e seletiva, que permitiram identificar três categorias nucleares: percepção das atividades realizadas no grupo, identificação de benefícios e barreiras do convívio no grupo e transformações decorrentes da participação. As participantes significaram sua presença no grupo como fonte de acolhimento, apoio, desenvolvimento de recursos pessoais e amizades, contribuindo para promover sua qualidade de sobrevida. Além dos potenciais benefícios, também foram identificadas barreiras que podem dificultar a adesão e continuidade da participação no grupo, o que sugere a necessidade de incorporar no cuidado um olhar para as dimensões subjetivas da saúde da mulher.(AU)

Surviving breast cancer is a public health problem and depends on services focused on psychosocial rehabilitation. Healthcare providers must encourage women to adopt strategies to promote their self-care. The psychological support group is a resource that helps women to face the long journey of treatment. This study aimed to understand the meanings women with breast cancer produced about their participation in a support group. This exploratory cross-sectional study was carried out with 10 women with breast cancer who use a rehabilitation service for mastectomized patients. Grounded Theory was used as a methodological reference. An open in-depth interview was applied for data collection. The contents were transcribed and coded. Inductive analysis and the constant comparison method were applied in the open, axial, and selective coding processes, which enabled the identification of three core categories: perception of the activities carried out in the group, identification of benefits and barriers of living in the group, and transformations resulting from participation. Participants denote their involvement with the group as a source of shelter, support, development of personal resources and friendships that helps promoting quality of life. Besides these potential benefits, participants also evinced barriers that can hinder adherence and continuity of participation in the group, suggesting the importance of incorporating a look at the subjective dimensions of women's health into care.(AU)

Sobrevivir al cáncer de mama es un problema de salud pública que depende de los servicios centrados en la rehabilitación psicosocial. Entre las necesidades identificadas en esta materia se encuentra el uso de estrategias para promover el autocuidado. Uno de los recursos que ayuda a afrontar el largo camino del tratamiento es el grupo de apoyo psicológico. El objetivo de este estudio es conocer los significados que producen las mujeres con cáncer de mama sobre su participación en un grupo de apoyo. Se trata de un estudio cualitativo, descriptivo y exploratorio, realizado con diez mujeres con cáncer de mama usuarias de un servicio de rehabilitación para mastectomizadas. Como referencia metodológica se utilizó la teoría fundamentada en los datos. Se aplicó una entrevista abierta en profundidad para la recogida de datos, cuyos contenidos fueron transcritos y codificados. El análisis inductivo y el método de comparación constante se aplicaron en los procesos de codificación abierta, axial y selectiva, lo que permitió identificar tres categorías centrales: percepción de las actividades realizadas en el grupo, identificación de los beneficios y las barreras de vivir en el grupo y transformaciones resultantes de la participación. Las mujeres denotan su participación en el grupo como una fuente de acogida, apoyo, desarrollo de recursos personales y amistades, que ayuda a promover la calidad de vida. Además de los beneficios potenciales, también se identificaron barreras que pueden dificultar la adherencia y continuidad de la participación en el grupo, lo que sugiere la necesidad de incorporar en la atención una mirada centrada en las dimensiones subjetivas de la salud de las mujeres.(AU)

Assessing the Determinants of Compliance with Contribution Payments to the National Health Insurance Scheme among Informal Workers in Indonesia.

This study aimed to investigate the determinants of compliance with contribution payments to the National Health Insurance (NHI) scheme among informal workers in Bogor Regency, West Java Province, Indonesia. Surveys of 418 informal workers in Bogor Regency from April to May 2023 were conducted. Multivariate logistic regression analyses were performed to assess the factors associated with informal workers' compliance with NHI contribution payments. The results revealed that being female, having lower secondary education or below, perceiving good health of family members, having negative attitudes toward and poor knowledge of the NHI, experiencing financial difficulties, preferring to visit health facilities other than public ones, and utilizing fewer outpatient services were significantly associated with the noncompliance of informal workers with NHI contribution payments. It was concluded that economic factors alone cannot contribute to informal workers' payment compliance and that motivational factors (knowledge, attitudes toward the insurance system, and self-related health status) also encourage them to comply with contribution payments. Improving people's knowledge, especially on the risk-sharing concept of the NHI, should be done through extensive health insurance education using methods that are appropriate for the population's characteristics.

Sistematização do preparo a alta à pessoa adulta com agravos clínicos e cirúrgicos / Systematization of discharge preparation for adults with clinical and surgical problems

Objetivo: O objetivo desse trabalho é descrever a sistematização do preparo a alta à pessoa adulta com agravos clínicos e cirúrgicos. Metodologia: Trata-se de um relato de experiência através da aplicação da Sistematização da Assistência de Enfermagem (SAE), voltado para pessoas com alta no contexto hospitalar. Resultados e discussão: Foi aplicado a teoria da adaptação nas seis fases da Teoria de Calista Roy e foi elaborado diagnósticos de enfermagem para os quatro modos de adaptação: fisiológico, interdependência, autoconceito e função de papel. Considerações finais: Ao aplicar a SAE no indivíduo com alta hospitalar a equipe multidisciplinar deve realizá-lo em todas as suas etapas, e utilizar os protocolos para oferecer um cuidado holístico e integral, visando a promoção da saúde, prevenção de risco potencial e adaptação diante das necessidades em saúde.(AU)

Objective: The aim of this study is to describe the systematization of discharge preparation for adults with clinical and surgical conditions. Methodology: This is an experience report on the application of the Systematization of Nursing Care (SNC) to people being discharged from hospital. Results and discussion: The theory of adaptation was applied in the six phases of Calista Roy's theory and nursing diagnoses were drawn up for the four modes of adaptation: physiological, interdependence, self-concept and role function. Final considerations: When applying the SNC to individuals discharged from hospital, the multidisciplinary team must carry it out in all its stages, and use the protocols to offer holistic and comprehensive care, with a view to promoting health, preventing potential risks and adapting to health needs.(AU)

Objetivo: El objetivo de este estudio es describir la sistematización de la preparación al alta de adultos con patologías clínicas y quirúrgicas. Metodología: Se trata de un informe de experiencia sobre la aplicación de la Sistematización de los Cuidados de Enfermería (SNC) a personas en proceso de alta hospitalaria. Resultados y discusión: Se aplicó la teoría de la adaptación en las seis fases de la teoría de Calista Roy y se elaboraron diagnósticos de enfermería para los cuatro modos de adaptación: fisiológica, interdependencia, autoconcepto y función de rol. Consideraciones finales: Al aplicar el SNC a las personas con alta hospitalaria, el equipo multidisciplinar debe llevarlo a cabo en todas sus fases, y utilizar los protocolos para ofrecer una atención holística e integral, dirigida a la promoción de la salud, la prevención de riesgos potenciales y la adaptación a las necesidades de salud.(AU)

Perceptions and experiences of the prevention, detection, and management of postpartum haemorrhage: a qualitative evidence synthesis.

BACKGROUND: Postpartum haemorrhage (PPH), defined as blood loss of 500 mL or more after childbirth, is the leading cause of maternal mortality worldwide. It is possible to prevent complications of PPH with timely and appropriate detection and management. However, implementing the best methods of PPH prevention, detection and management can be challenging, particularly in low- and middle-income countries. OBJECTIVES: Our overall objective was to explore the perceptions and experiences of women, community members, lay health workers, and skilled healthcare providers who have experience with PPH or with preventing, detecting, and managing PPH, in community or health facility settings. SEARCH METHODS: We searched MEDLINE, CINAHL, Scopus, and grey literature on 13 November 2022 with no language restrictions. We then performed reference checking and forward citation searching of the included studies. SELECTION CRITERIA: We included qualitative studies and mixed-methods studies with an identifiable qualitative component. We included studies that explored perceptions and experiences of PPH prevention, detection, and management among women, community members, traditional birth attendants, healthcare providers, and managers. DATA COLLECTION AND ANALYSIS: We used three-stage maximum variation sampling to ensure diversity in terms of relevance of the study to the review objectives, richness of data, and coverage of critical contextual elements: setting (region, country income level), perspective (type of participant), and topic (prevention, detection, management). We extracted data using a data extraction form designed for this review. We used thematic synthesis to analyse and synthesise the evidence, and we used the GRADE-CERQual (Confidence in the Evidence from Reviews of Qualitative research) approach to assess our confidence in each finding. To identify factors that may influence intervention implementation, we mapped each review finding to the Theoretical Domains Framework (TDF) and the Capability, Motivation, and Opportunity model of Behaviour change (COM-B). We used the Behaviour Change Wheel to explore implications for practice. MAIN RESULTS: We included 67 studies and sampled 43 studies for our analysis. Most were from low- or middle-income countries (33 studies), and most included the perspectives of women and health workers. We downgraded our confidence in several findings from high confidence to moderate, low, or very-low confidence, mainly due to concerns about how the studies were conducted (methodological limitations) or concerns about missing important perspectives from some types of participants or in some settings (relevance). In many communities, bleeding during and after childbirth is considered "normal" and necessary to expel "impurities" and restore and cleanse the woman's body after pregnancy and birth (moderate confidence). In some communities, people have misconceptions about causes of PPH or believe that PPH is caused by supernatural powers or evil spirits that punish women for ignoring or disobeying social rules or for past mistakes (high confidence). For women who give birth at home or in the community, female family members or traditional birth attendants are the first to recognise excess bleeding after birth (high confidence). Family members typically take the decision of whether and when to seek care if PPH is suspected, and these family members are often influenced by trusted traditional birth attendants or community midwives (high confidence). If PPH is identified for women birthing at home or in the community, decision-making about the subsequent referral and care pathway can be multifaceted and complex (high confidence). First responders to PPH are not always skilled or trained healthcare providers (high confidence). In health facilities, midwives may consider it easy to implement visual estimation of blood loss with a kidney dish or under-pad, but difficult to accurately interpret the amount of blood loss (very low confidence). Quantifying (rather than estimating) blood loss may be a complex and contentious change of practice for health workers (low confidence). Women who gave birth in health facilities and experienced PPH described it as painful, embarrassing, and traumatic. Partners or other family members also found the experience stressful. While some women were dissatisfied with their level of involvement in decision-making for PPH management, others felt health workers were best placed to make decisions (moderate confidence). Inconsistent availability of resources (drugs, medical supplies, blood) causes delays in the timely management of PPH (high confidence). There is limited availability of misoprostol in the community owing to stockouts, poor supply systems, and the difficulty of navigating misoprostol procurement for community health workers (moderate confidence). Health workers described working on the maternity ward as stressful and intense due to short staffing, long shifts, and the unpredictability of emergencies. Exhausted and overwhelmed staff may be unable to appropriately monitor all women, particularly when multiple women are giving birth simultaneously or on the floor of the health facility; this could lead to delays in detecting PPH (moderate confidence). Inadequate staffing, high turnover of skilled health workers, and appointment of lower-level cadres of health workers are key challenges to the provision of quality PPH care (high confidence). Through team-based simulation training, health workers of different cadres (doctors, midwives, lay health workers) can develop a shared mental model to help them work quickly, efficiently, and amicably as a team when managing women with PPH (moderate confidence). AUTHORS' CONCLUSIONS: Our findings highlight how improving PPH prevention, detection, and management is underpinned by a complex system of interacting roles and behaviours (community, women, health workers of different types and with different experiences). Multiple individual, sociocultural, and environmental factors influence the decisions and behaviours of women, families, communities, health workers, and managers. It is crucial to consider the broader health and social systems when designing and implementing PPH interventions to change or influence these behaviours. We have developed a set of prompts that may help programme managers, policymakers, researchers, and other key stakeholders to identify and address factors that affect implementation and scale-up of interventions to improve PPH prevention, detection, and management.

Qualitative differences in perspective on children's quality of life between children with cerebral palsy and their parents.

BACKGROUND: Cerebral palsy (CP) is one of the most common childhood disabilities, impacting many areas of a child's life. Increasingly, quality of life (QOL) measures are used to capture holistic wellbeing of children with CP. However most validated QOL measures for children are based on adult perspective only, with limited focus on child perspective. Conceptual differences between children's and adults' definitions of QOL may reflect different underlying QOL models which contribute to measurement score divergence. This qualitative study investigated the conceptual meaning of QOL for children with CP, comparing child and parent perspectives. Eighteen families completed 8 child interviews and 18 parent interviews. Children (11 boys, 7 girls) represented the spectrum of motor functioning, with comorbidities including epilepsy, intellectual disability, and communication impairments. Child and parent interviews were analysed separately using constructivist grounded theory methods and then findings were integrated to examine similarities and differences. RESULTS: All participants sought child inclusion in social activities, education, and recreation, requiring negotiation, adaptations, and advocacy. Five conceptual categories emerged from child interviews: socialising, play, negotiating limitations, self-identity, and developing agency. This reflected an individual model of QOL supporting child development goals. Parent interview findings revealed concepts related to child-specific QOL (day-to-day functioning and enabling child goals), as well as parent and family functioning concepts aligned to models of "family QOL", embracing impacts of family relationships and the interdependence of QOL among family members. CONCLUSIONS: This study identified similarities and differences in child and parent perceptions of QOL for the child with CP. Children provided insights into the importance of play and peer support, and their developing self-identity and sense of agency. Self-directed free play, especially, was identified by children but not parents as a central everyday activity promoting wellbeing and social inclusion. Parents discussed family functioning and aspects outside of child sight, such as managing time and financial resources. Relying on parents' perspective alone to model child QOL misses valuable information that children contribute. Equally, child report alone misses parent experiences that directly influence child QOL. There is value in incorporating family QOL into parent reports while developing a conceptually separate child self-report QOL instrument.