Caregiving consequences in cancer family caregivers: a narrative review of qualitative studies.

Background: Cancer is a significant public health issue, causing various challenges for individuals affected by it. As cancer progresses, patients often become dependent on others for support. Family caregivers and members play a crucial role in the recovery and rehabilitation of these patients. However, caregivers themselves face numerous challenges throughout the course of their family member's illness. Exploring the experiences of family caregivers can inform long-term planning and supportive interventions to address their caregiving difficulties. This study reviews previous literature on caregiving outcomes. Method: This study presents a narrative review of qualitative studies, analyzing a total of 23 articles. The results were extracted and organized into subcategories. After revision by the research team, main categories were identified. These categories encompass both positive and negative outcomes of caregiving. Results: The findings of this review demonstrate that caring for a family member with cancer has significant implications for caregivers. These implications include: (A) Positive outcomes of caregiving (such as achieving self-management and balance, promoting kinship intimacy, finding meaning and purpose, and experiencing spiritual growth) and (B) Negative outcomes of caregiving (including care-related physical exhaustion, disruption of personal life plans, psycho-emotional consequences, and socio-economic burden). Conclusion: The results of this study highlight the challenges faced by family caregivers and emphasize the importance of addressing their needs within the healthcare system. By providing support and attention to their well-being, caregivers can enhance their resilience and adaptability in managing caregiving difficulties.

"It Can Be Confusing": Family Perspectives on Food Insecurity Screening in Urban Pediatric Primary Care Clinics.

Food insecurity, for which families are routinely screened at medical visits, has deleterious health consequences. This study sought to understand the lived experiences of families with lower incomes participating in food insecurity screening at two urban pediatric primary care clinics. Forty-three semi-structured interviews were performed in English and Spanish with families with public insurance after well visits where food insecurity screening was documented. Immersion-crystallization analysis was used to identify salient themes. Families reported discomfort with food insecurity screening, but nonetheless found screening acceptable when performed universally and privately. Families shared confusion about how their screening responses would be used and expected that resources would be available promptly for those who screen positive. Food insecurity screening may be improved for families through explanations of how responses will be used, allowing families to opt out, soliciting family preferences for resource referral, and offering promptly available resources for families with food insecurity.

"It's a stressful, trying time for the caretaker": an interpretive description qualitative study of postoperative transitions in care for older adults with frailty from the perspectives of informal caregivers.

BACKGROUND: Older adults with frailty have surgery at a high rate. Informal caregivers often support the postoperative transition in care. Despite the growing need for family and caregiver support for this population, little is known about the experience of providing informal care to older adults with frailty during the postoperative transition in care. The purpose of this study was to explore what is important during a postoperative transition in care for older adults with frailty from the perspective of informal caregivers. METHODS: This was a qualitative study using an interpretive description methodology. Seven informal caregivers to older adults [aged ≥ 65 years with frailty (Clinical Frailty Scale score ≥ 4) who had an inpatient elective surgery] participated in a telephone-based, semi-structured interview. Audio files were transcribed and analyzed using reflexive thematic analysis. RESULTS: Four themes were constructed: (1) being informed about what to expect after surgery; (2) accessible communication with care providers; (3) homecare resources are needed for the patient; and (4) a support network for the caregivers. Theme 4 included two sub-themes: (a) respite and emotional support and (b) occupational support. CONCLUSIONS: Transitions in care present challenges for informal caregivers of older adults with frailty, who play an important role in successful transitions. Future postoperative transitional care programs should consider making targeted information, accessible communication, and support networks available for caregivers as part of facilitating successful transitions in care.

Developing a conceptual model for understanding caregiving experience and their impacts on quality of life for Chinese breast cancer family caregivers: A qualitative study.

AIM: The purpose of this study was to understand the caregiving experiences of breast cancer family caregivers and explore the profound impacts of those experiences on their quality of life. DESIGN: A qualitative research method was used. METHODS: We extended invitations to 23 family caregivers of outpatients and inpatients receiving breast surgery and oncology treatments in Taiyuan, China, to participate in semi-structured interviews. The interviews were audio-recorded and transcribed verbatim. Thematic analysis was employed to analyse the interview data. RESULTS: Four themes and associated categories were identified: (1) changes in family dynamics, (2) the socio-medical context, (3) interactions between family and society, (4) self-efficacy and nine subthemes and their related categories, where virtually all participants expressed future uncertainty, emotional contagion, and personal challenges, and self-efficacy had a moderating influence on the first three themes. PATIENT OR PUBLIC CONTRIBUTION: This study did not involve direct participation of patients or the public. However, their experiences and perspectives on caregiving were indirectly reflected through the insights provided by the family caregivers who participated in the interviews. Their valuable input contributed to a deeper understanding of the caregiving experience and its impact on the quality of life for Chinese breast cancer family caregivers.

Caregiver experiences of caring for family members with urostomy: a qualitative study.

OBJECTIVE: In China, bladder tumors rank first for morbidity and mortality among urological and reproductive system tumors. Total radical cystectomy plus urinary flow conversion is the gold standard for the treatment of muscle-layer invasive bladder cancer. With an increasing number of radical cystectomies each year, the number of patients living with urostomy is growing. After discharge, primary care of urostomy patients is given at home, and high demands are placed on home caregivers due to issues of privacy and the complexity of replacing the urostomy device. This research explored the challenges faced by the family caregivers of urostomy patients. METHODS: We used descriptive qualitative research methods to conduct interviews with twenty-five family caregivers of patients with urostomy. Survey subjects were from five general hospitals. All interviews were recorded, transcribed, and analyzed using thematic analysis. RESULTS: Three critical challenges were identified-confusion, family crisis, and struggle psychology. Within these three themes, six sub-themes were constructed by coders. They were knowledge and skill deficiency, strong insecurities and uncertainties, role conflict, economic burden, emotional overwhelmed and calm acceptance. CONCLUSION: Family caregivers play a critical role in patient care, and especially in urostomy care. Caregiving is associated with significant challenges that hinder the family caregiver's ability to effectively care for the patient, further diminishing the caregiver's quality of life. Therefore, healthcare professionals should consider the challenges faced by family caregivers and take measures to obviate them through education, preparation, and support.

Exploring grandparents' psychosocial responses to childhood cancer: A qualitative study.

OBJECTIVE: A childhood cancer diagnosis is a traumatic experience for patients and their families. However, little is known about the effect on grandparents. We aimed to investigate the negative psychosocial impact, coping strategies, and positive outcomes of grandparents of childhood cancer patients in Switzerland. METHODS: We collected data using a semi-structured interview guide and applied qualitative content analysis. RESULTS: We conducted 20 interviews with 23 grandparents (57% female; mean age = 66.9 years; SD = 6.4; range = 57.0-82.4) of 13 affected children (69% female; mean age = 7.5 years; SD = 6.1; range = 1.0-18.9) between January 2022 and April 2023. The mean time since diagnosis was 1.0 years (SD = 0.5; range = 0.4-1.9). Grandparents were in shock and experienced strong feelings of fear and helplessness. They were particularly afraid of a relapse or late effects. The worst part for most was seeing their grandchild suffer. Many stated that their fear was always present which could lead to tension and sleep problems. To cope with these negative experiences, the grandparents used internal and external strategies, such as accepting the illness or talking to their spouse and friends. Some grandparents also reported positive outcomes, such as getting emotionally closer to family members and appreciating things that had previously been taken for granted. CONCLUSIONS: Grandparents suffer greatly when their grandchild is diagnosed with cancer. Encouragingly, most grandparents also reported coping strategies and positive outcomes despite the challenges. Promoting coping strategies and providing appropriate resources could reduce the psychological burden of grandparents and strengthen the whole family system.

A Randomized Trial of Two Remote Health Care Delivery Models on the Uptake of Genetic Testing and Impact on Patient-Reported Psychological Outcomes in Families With Pancreatic Cancer: The Genetic Education, Risk Assessment, and Testing (GENERATE) Study.

BACKGROUND & AIMS: Genetic testing uptake for cancer susceptibility in family members of patients with cancer is suboptimal. Among relatives of patients with pancreatic ductal adenocarcinoma (PDAC), The GENetic Education, Risk Assessment, and TEsting (GENERATE) study evaluated 2 online genetic education/testing delivery models and their impact on patient-reported psychological outcomes. METHODS: Eligible participants had ≥1 first-degree relative with PDAC, or ≥1 first-/second-degree relative with PDAC with a known pathogenic germline variant in 1 of 13 PDAC predisposition genes. Participants were randomized by family, between May 8, 2019, and June 1, 2021. Arm 1 participants underwent a remote interactive telemedicine session and online genetic education. Arm 2 participants were offered online genetic education only. All participants were offered germline testing. The primary outcome was genetic testing uptake, compared by permutation tests and mixed-effects logistic regression models. We hypothesized that Arm 1 participants would have a higher genetic testing uptake than Arm 2. Validated surveys were administered to assess patient-reported anxiety, depression, and cancer worry at baseline and 3 months postintervention. RESULTS: A total of 424 families were randomized, including 601 participants (n = 296 Arm 1; n = 305 Arm 2), 90% of whom completed genetic testing (Arm 1 [87%]; Arm 2 [93%], P = .014). Arm 1 participants were significantly less likely to complete genetic testing compared with Arm 2 participants (adjusted ratio [Arm1/Arm2] 0.90, 95% confidence interval 0.78-0.98). Among participants who completed patient-reported psychological outcomes questionnaires (Arm 1 [n = 194]; Arm 2 [n = 206]), the intervention did not affect mean anxiety, depression, or cancer worry scores. CONCLUSIONS: Remote genetic education and testing can be a successful and complementary option for delivering genetics care. (Clinicaltrials.gov, number NCT03762590).

The lived experience of people affected by cancer: A global cross-sectional survey protocol.

A diagnosis of cancer impacts the person's physical and mental health and the psychosocial and financial health of their caregivers. While data on the experience of living with cancer is available, there is a dearth of data from persons in low- and middle-income countries (LMICs). The perspectives of other impacted individuals also remain understudied (e.g., bereaved family members), as well as the impact on survivors and their families over time. The objective of this study is to describe the psychosocial and financial impact of cancer on people diagnosed with cancer as a child, adolescent or adult, their families/caregivers, and the family members of those who have died from cancer, in high-income countries (HICs) and LMICs. This study is an observational, descriptive, quantitative study. Data will be collected anonymously via a digital online cross-sectional survey distributed globally by the World Health Organization (WHO) via the LimeSurvey software. Participants will include (a) adults aged 18+ who have been diagnosed with cancer at any age, who are currently undergoing cancer treatment or who have completed cancer treatment; (b) adult family members of individuals of any age with a cancer diagnosis, who are currently undergoing cancer treatment or who have completed cancer treatment; and (c) bereaved family members. Participants will be anonymously recruited via convenience and snowball sampling through networks of organisations related to cancer. Survey results will be analysed quantitatively per respondent group, per time from diagnosis, per disease and country. Results will be disseminated in peer-reviewed journals and at scientific conferences; a summary of results will be available on the WHO website. This study will suggest public health interventions and policy responses to support people affected by cancer and may also lead to subsequent research focusing on the needs of people affected by cancer.

Taiwanese family members' bereavement experience following an expected death: a systematic review and narrative synthesis.

BACKGROUND: Bereavement experience is shaped by cultural and social contexts. No systematically constructed reviews were identified to explore the bereavement experience for people who are influenced by Chinese culture valuing filial piety and mutual dependence. This review aimed to systematically review the bereavement experience of Taiwanese family members living in Taiwan following an expected death. METHODS: MEDLINE, PsycINFO, CINAHL, China Academic Journal Database, and Chinese Electronic Periodical Services were searched with no date restrictions from inception to 20 October 2022. The methodological rigour of studies was assessed using Hawker's appraisal tool. A narrative synthesis approach using Popay's work was employed to synthesise the findings of the studies. Studies investigating Taiwanese family members' bereavement experiences were included. We excluded papers studying bereavement through the death of a child. RESULTS: Searches retrieved 12,735 articles (after de-duplication), 17 of which met the inclusion criteria and were included for synthesis: English [9] and Chinese [8], published between 2006 and 2021. The studies varied in quality with scores ranging from 22 to 33 out of 36. The studies differed in the relationship between participants and the deceased, the bereaved time frames, and the definitions of bereavement. Most studies focussed on family members of cancer patients receiving specialist palliative care. Three bereavement theories and four tools were used. Risk factors of bereavement outcomes included family members feeling less prepared for death and deaths where palliative sedative therapy was used. Protective factors were higher caregiving burden and longer caregiving periods. Four themes regarding Taiwanese bereavement experience were generated: multiple impacts of death; problem-based coping strategies; importance of maintaining connections; influential religious beliefs and rituals. CONCLUSION: Continuing the relationship with the deceased is a key element of Taiwanese bereavement experience and it is influenced by religious and cultural beliefs. Suppressing or hiding emotions during bereavement to connect with the deceased and maintain harmonious relationships needs to be acknowledged as culturally acceptable and encouraged by some religions in Taiwan. The findings could be potentially relevant for other Chinese populations, predominantly Buddhist countries or other East Asian societies. The role of preparing for death in bereavement outcomes is little understood and requires further research.

Perspectives of telemedicine-based services among family caregivers of patients with end-of-life cancer: a qualitative study in mainland China.

BACKGROUND: Despite being driven by a strong sense of duty and familial obligation, providing care for patients nearing the end of life poses challenges for family caregivers. Telemedicine has rapidly gained traction as a transformative approach to healthcare delivery, offering an array of benefits that could be particularly valuable in end-of-life care. However, research on the perspectives of telemedicine-based services among family caregivers of patients with end-of-life cancer is limited. Therefore, this study aims to explore the perspectives and preferences of telemedicine-based services among family caregivers of patients with end-of-life cancer and provide a framework for developing and executing a tailored telemedicine-based end-of-life care program that addresses the unique needs of family caregivers in mainland China. METHOD: A descriptive phenomenological approach was used. Family caregivers were selected using purposive sampling at a tertiary cancer hospital. One-on-one semi-structured interviews were conducted with the participants from November to December 2022. Colaizz's method was used to analyze the interviews. RESULTS: Fourteen participants participated in interviews. Three themes and ten subthemes were identified: motivation to receive telemedicine services (relief from the burden of home care; access to professional health care services), supportive care needs for telemedicine services (support for symptom management; negative emotional adjustment; death education; daily life care guidance), and functional expectations of telemedicine service platforms (ease of use; real-time online guidance and response; personalized automatic reminder; targeted matching push of health knowledge). CONCLUSION: Family caregivers expressed interest in telemedicine-based services and identified various care needs before receiving telemedicine services. The findings of this study can help policymakers and healthcare providers develop more effective and culturally appropriate telemedicine-based service programs that can better support family caregivers of end-of-life cancer patients.

"We need a little strength as well": Examining the social context of informal caregivers for Black women with breast cancer.

BACKGROUND: Informal caregivers (e.g., partners, other family members, friends) often provide social support to Black women with breast cancer, and caregivers find both benefits and challenges in their caregiving role. METHODS: In this qualitative study, twenty-four caregivers for Black women with breast cancer participated in focus groups and interviews. Participants responded to a brief close-ended questionnaire as well as semi-structured questions about their experiences as cancer caregivers. Demographic information was collected, and relationship satisfaction was measured by the Relationship Assessment Scale-General scale (RAS-G). Focus groups and interviews were recorded, transcribed verbatim, and coded by two independent coders. Using an iterative, discussion-based process, the study team developed and refined themes. RESULTS: All caregivers described themselves as Black/African American, and the majority identified as female (79%). The mean RAS-G score was 4.5 (SD = 0.5), indicating high levels of relationship satisfaction. Qualitative themes included using a range of strategies to provide emotional support; shifting between roles; needing time and space; and trying to stay strong. Several female caregivers described how the cumulative experiences of providing care for multiple family members and friends could be draining, as could their own experiences in the patient role. CONCLUSIONS: These findings show a complex, multilayered social context that affects both the patient-caregiver relationship and the health and wellbeing of caregivers. Clinicians providing treatment and support for Black women with breast cancer should be mindful of how the health context of the family may affect patient and caregiver outcomes.

A qualitative study of childhood cancer families' post-treatment needs and the impact of a community-based organization in a rural, socioeconomically disadvantaged, majority Hispanic/Latino region.

BACKGROUND: Individual- and population-level socioeconomic disadvantages contribute to unequal outcomes among childhood cancer survivors. Reducing health disparities requires understanding experiences of survivors from historically marginalized communities, including those with non-English language preference. PROCEDURE: We partnered with a community-based organization (CBO) serving families of children with cancer in a rural region in California with low socioeconomic status and majority Hispanic/Latino (H/L) residents. We interviewed English- and Spanish-speaking adolescent/young adult (AYA) childhood cancer survivors (≥15 years old, ≥5 years from diagnosis), parents, and CBO staff to evaluate post-treatment needs and impact of CBO support. Data were analyzed qualitatively using applied thematic analysis. Themes were refined through team discussions with our community partners. RESULTS: Twelve AYAs (11 H/L, 11 bilingual), 11 parents (eight H/L, seven non-English preferred), and seven CBO staff (five H/L, five bilingual) participated. AYAs (five female, seven male) were of median (min-max) age 20 (16-32) and 9 (5-19) years post diagnosis; parents (nine female, two male) were age 48 (40-60) and 14 (6-23) years post child's diagnosis. Themes included challenges navigating healthcare, communication barriers among the parent-AYA-clinician triad, and lasting effects of childhood cancer on family dynamics and mental health. Subthemes illustrated that language and rurality may contribute to health disparities. CBO support impacted families by serving as a safety-net, fostering community, and facilitating H/L families' communication. CONCLUSIONS: Childhood cancer has long-lasting effects on families, and those with non-English language preference face additional burdens. Community-based support buffers some of the negative effects of childhood cancer and may reduce disparities.

Pediatric Death After Withdrawal of Life-Sustaining Therapies: A Scoping Review.

OBJECTIVES: Evaluate literature on the dying process in children after withdrawal of life sustaining measures (WLSM) in the PICU. We focused on the physiology of dying, prediction of time to death, impact of time to death, and uncertainty of the dying process on families, healthcare workers, and organ donation. DATA SOURCES: MEDLINE, Embase, Cochrane Central Register of Controlled Trials, PsycINFO, CINAHL, and Web of Science. STUDY SELECTION: We included studies that discussed the dying process after WLSM in the PICU, with no date or study type restrictions. We excluded studies focused exclusively on adult or neonatal populations, children outside the PICU, or on organ donation or adult/pediatric studies where pediatric data could not be isolated. DATA EXTRACTION: Inductive qualitative content analysis was performed. DATA SYNTHESIS: Six thousand two hundred twenty-five studies were screened and 24 included. Results were grouped into four categories: dying process, perspectives of healthcare professionals and family, WLSM and organ donation, and recommendations for future research. Few tools exist to predict time to death after WLSM in children. Most deaths after WLSM occur within 1 hour and during this process, healthcare providers must offer support to families regarding logistics, medications, and expectations. Providers describe the unpredictability of the dying process as emotionally challenging and stressful for family members and staff; however, no reports of families discussing the impact of time to death prediction were found. The unpredictability of death after WLSM makes families less likely to pursue donation. Future research priorities include developing death prediction tools of tools, provider and parental decision-making, and interventions to improve end-of-life care. CONCLUSIONS: The dying process in children is poorly understood and understudied. This knowledge gap leaves families in a vulnerable position and the clinical team without the necessary tools to support patients, families, or themselves. Improving time to death prediction after WLSM may improve care provision and enable identification of potential organ donors.

Mães em quarentena: maternidade em tempos de isolamento social decorrente da Covid-19 / Madres en cuarentena: la maternidad en tiempos de aislamiento social y Covid-19 / Mothers in quarantine: motherhood in times of social isolation due to Covid-19 pandemic

RESUMO Este estudo teve por objetivo analisar o impacto do isolamento social decorrente da pandemia de Covid-19 sobre a vida familiar, com ênfase na vivência da maternidade e na relação com os filhos. Participaram 20 mães de camadas sociais médias, de 29 a 45 anos, que mantinham atividades laborais a distância e estavam em isolamento social. Foram realizadas entrevistas individuais em profundidade por meio digital. O material coletado foi transcrito e submetido à análise de conteúdo temática. Os resultados mostraram que as mudanças impostas pela pandemia impactaram diretamente a vida familiar, explicitando as desigualdades de gênero na organização da rotina, distribuição de tarefas domésticas e cuidados parentais. Observou-se uma relação ambivalente das mães com a maternidade e com seus imperativos sociais, que reverberam no vínculo que estabelecem com seus filhos. A análise revela que a sobrecarga emocional e física contribui para exacerbar sentimentos de culpa e solidão vivenciados na relação com a maternidade, além de evidenciar conflitos no desempenho dos papéis de mãe, esposa e profissional. As entrevistadas demonstraram exaustão com as demandas domésticas e de cuidados com os filhos, além de conflitos relacionados ao descompasso entre expectativas e padrões sociais que regulam o exercício da maternidade e suas experiências pessoais como mães. As conclusões sugerem a presença de uma crise identitária relacionada aos ideais sociais vinculados às vivências da maternidade, o que convida a pensar na urgência de se olhar para o sofrimento materno, buscando compreender as dimensões subjetivas das transformações que perpassam essa experiência na vigência do isolamento social.

RESUMEN El objetivo de este estudio fue analizar los efectos del aislamiento social resultante de la pandemia de COVID-19 en la vida familiar, con énfasis en la experiencia de la maternidad y la relación con los niños. Participaron 20 madres de estratos sociales medios, de 29 a 45 años de edad, que mantenían actividades laborales a distancia y se encontraban en aislamiento social. Se realizaron entrevistas individuales exhaustivas por medios digitales. El material recopilado se transcribió y se sometió a un análisis de contenido temático. Los resultados mostraron que los cambios impuestos por la pandemia afectaban directamente a la vida familiar, lo que explicaba las desigualdades de género en la organización rutinaria, la distribución de las tareas domésticas y el cuidado de los niños. Se observó una relación ambivalente entre las madres y la maternidad y sus imperativos sociales, que reverberaban en el vínculo que establecen con sus hijos. El análisis revela que la sobrecarga emocional y física contribuye a exacerbar los sentimientos de culpa y soledad experimentados en la relación con la maternidad, además de mostrar conflictos en el desempeño de los papeles de madre, esposa y profesional. Las mujeres entrevistadas mostraron agotamiento con las demandas domésticas y el cuidado de sus hijos, además de conflictos relacionados con el desajuste entre las expectativas y las normas sociales que regulan el ejercicio de la maternidad y sus experiencias personales como madres. Las conclusiones sugieren la presencia de una crisis de identidad ligada a los ideales sociales vinculados a las experiencias de la maternidad, lo que invita a pensar en la urgencia de mirar el sufrimiento materno, tratando de comprender las dimensiones subjetivas de las transformaciones en tiempos de aislamiento social.

ABSTRACT This study aimed to analyze the impacts of the social isolation resulting from the COVID-19 pandemic on family life, with emphasis on the experience of motherhood and the relationship with children. Twenty mothers from the middle social strata, from 29 to 45 years old, who kept working activities at a distance and were in social isolation, participated. In-depth individual interviews were conducted by digital means. The collected material was transcribed and submitted to thematic content analysis. The results showed that the changes imposed by the pandemic directly impacted family life, highlighting gender inequalities in routine organization, distribution of household tasks and parental care. An ambivalent relationship was observed between mothers and maternity and their social imperatives, which reverberated in the bond they establish with their children. The analysis reveals that emotional and physical burden contributes to exacerbate feelings of guilt and loneliness experienced in the relationship with motherhood, in addition to showing conflicts in the performance of the roles of mother, wife and professional. The women interviewed showed exhaustion with domestic and child care demands, in addition to conflicts related to the mismatch between expectations and social standards that regulate the exercise of motherhood and their personal experiences as mothers. The conclusions suggest the presence of an identity crisis due to the social ideals linked to the experiences of motherhood, which invites us to think about the urgency of looking at maternal suffering, seeking to understand the subjective dimensions of the transformations that this experience goes through in the times of social isolation.

Homossexualidade, família e religião: uma análise psicossocial de orações para Bobby / Homosexualidad, familia y religión: un análisis psicosocial de oraciones por Bobby / Homosexuality, family and religion: a psychosocial analysis of prayers for Bobby

RESUMO Discute-se a relação entre homossexualidade, religião e família, a partir da Psicologia Sócio-histórica. Busca-se investigar, por meio de uma análise fílmica, os sentidos e significados apresentados pela família, em relação à homossexualidade. Para tanto, utiliza-se a produção filmográfica Orações para Bobby, como um documento cultural, datado historicamente, que permite evidenciar as formas de vivências psicossociais. Nesta proposição, metodologicamente são adotados procedimentos de identificação, recorte, descrição e interpretação de cenas emblemáticas. Desse modo, realizaram-se a identificação, o recorte e a localização temporal, a descrição detalhada de textos das cenas com seus aspectos visuais e auditivos e construíram-se três categorias de análise das 16 cenas emblemáticas selecionadas: significados de religião, homossexualidade e família; significado de homossexualidade e suicídio; e impactos intergeracionais do signo da homossexualidade. Os resultados indicam que a relação entre a homossexualidade assumida, dogmas religiosos e família tradicional podem desencadear atos suicidas com motivação volitiva e consciente; as acepções de signo, sentidos, significado, mediação e internalização contribuíram para compreender o impacto que os conceitos da homossexualidade, socialmente construídos, incidem na vivência da sexualidade de jovens homossexuais e seus relacionamentos afetivos no âmbito social e familiar. O significado da homossexualidade apresenta-se de forma pejorativa, com força de materialidade histórica e de manutenção hegemônica de ideias, por meio de grupos conservadores, que encontram na família um lugar afetuoso e subjetivo, de reprodução fértil, ao passo que coletivos identitários, como a comunidade LGBTQIA+, buscam espaços para o debate político com avanços e rupturas dessas noções, historicamente construídas, no processo de significação da sexualidade.

RESUMEN. Se discute la relación entre la homosexualidad, religión y familia, establecido em la psicologia sociohistórica. Busca indagar, a través de un análisis fílmico, los sentidos y significados presentados por la familia, en relación a la homosexualidad. Para esto, se usa la producción cinematográfica, Oraciones por Bobby como documento histórico y cultural que permite ressaltar las formas de las experiencias psicosociales. En esta proposición se adoptan metodologicamente procedimientos de identificación, recorte, descripción e interpretación de escenas emblemáticas. De este modo, se cosntruyeron tres categorías de análisis de las 16 escenas emblemáticas seleccionadas: significados de religión, homosexualidad y familia; significado de homosexualidad y suicido y los impactos intereracionales de los signos de la homosexualidad. Los resultados indican que larelación entre la homosexualidad asumida, los dogmas religiosos y la familia tradicional puede desencadenar actos suicidas com motivación volitiva y consciente; los significados del signo, los sentidos, el significado, la mediación y la internalización contribuyeron a la comprensióndel impacto que los conceptos de homosexualidad, construidos socialmente, tienen en la experiencia de la sexualidad de los jóvenes homosexuales y sus relaciones afectivas en la esfera social y familiar. Finalmente, se considera que la producción cinematográfica anima las discusiones sobre temas y fenómenos complejos, conorígenes históricas y representaciones persistentes, en el cualmoviliza nuevas formas de pensar y construir lo social; el significado de la homosexualidad se presenta de manera peyorativa , com lafuerza de la materialidade histórica y el mantenimiento hegemónico de las ideas, a través de grupos conservadores, que encuentran en la família un lugar, cariñoso y subjetivo, de reproducción fértil, mientras que los colectivos de identidad, la comunidad LGBTQIA+ busca espacios para el debate político y los avances y rupturas de estas nociones, historicamente construidas, en el processo de significar la sexualidad. Se insertan nuevos componentes, a través de las historias de personas que intercambian visiones y palabras impregnadas de sentido, que se reformulan constantemente.

ABSTRACT The relationship among homosexuality, religion and family is discussed, based on Socio-historical Psychology. For this purpose, the movie Prayers for Bobby is used as a cultural document, historically dated, which allows highlighting the forms of psychosocial experiences. Three categories of analysis of the 16 selected emblematic scenes were constructed: meanings of religion, homosexuality and family; the meaning of homosexuality and suicide; and intergenerational impacts of the homosexuality sign. The results indicate that the relationship among assumed homosexuality, religious dogma and the traditional family can trigger suicidal acts with volitional and conscious motivation; the sign, senses, meaning, mediation and internalization approaches have contributed to understanding the impact that socially constructed concepts of homosexuality have on the experience of young homosexuals sexuality and their affective relationships in the social and family spheres. Finally, it is considered that cinematographic production encourages discussions of complex issues and phenomena with persistent origins and historical representations, which mobilize new ways of thinking and constructing society. Homosexual meaning is set out pejoratively, with the strength of historical materiality and hegemonic maintenance of ideas, through conservative groups, who find an affectionate and subjective, fertile reproduction place in the family. In contrast, identity collectives, the LGBTQIA+ community, seek spaces for political debate and advances and ruptures of historically constructed notions in the process of signifying sexuality. The individuals' stories exchanging visions and words are inserted with new components constantly reformulated with meaning.

A tomada de decisão no tratamento de crianças com indicadores de TDAH / Toma de decisiones en el tratamiento de niños con indicadores de TDAH / Decision making in the treatment of children with ADHD indicators

RESUMO O diagnóstico de Transtorno de Déficit de Atenção e Hiperatividade - TDAH é bastante complexo, podendo ser influenciado por fatores contextuais, e seu tratamento pode envolver diferentes intervenções. A participação dos usuários nas decisões a respeito do tratamento vem sendo promovida por instituições de diversos países e, no Brasil, é prevista pelas legislações do Sistema Único de Saúde. Este estudo investigou o processo de tomada de decisão no tratamento de crianças com indicadores de TDAH a partir da percepção de oito profissionais de serviços públicos de saúde mental, que foram entrevistados individualmente. Os dados foram examinados através da análise temática, revelando desafios relativos ao excesso de demanda nos serviços e à complexidade do processo diagnóstico. O envolvimento de usuários e familiares nas decisões foi percebido como parcial, ocorrendo geralmente após a elaboração do plano terapêutico pelas equipes, e envolvendo dificuldades na comunicação entre profissionais e pacientes e divergências de interesses entre as crianças e seus familiares. Esses aspectos poderão ser abordados em futuros estudos e intervenções a fim de facilitar e melhorar a qualidade da tomada de decisão nesse contexto.

RESUMEN El diagnóstico del trastorno por déficit de atención con hiperactividad - TDAH es bastante complejo y puede verse influenciado por factores contextuales, y su tratamiento puede implicar diferentes intervenciones. La participación de los usuarios en las decisiones sobre tratamiento ha sido promovida por instituciones de diferentes países y, en Brasil, está prevista por las leyes del Sistema Único de Salud. Este estudio investigó el proceso de toma de decisiones en el tratamiento de niños con indicadores TDAH desde la percepción de 8 profesionales de la salud mental pública, que fueron entrevistados individualmente. Los datos fueron examinados a través del análisis temático, revelando desafíos relacionados con el exceso de demanda en los servicios y la complejidad del proceso de diagnóstico. La implicación de los usuarios y familiares en las decisiones se percibió como parcial, ocurriendo generalmente después de la elaboración del plan terapéutico por los equipos, y implicando dificultades en la comunicación entre profesionales y pacientes y divergencias de intereses entre los niños y sus familias. Estos aspectos pueden abordarse en futuros estudios e intervenciones con el fin de facilitar y mejorar la calidad de la toma de decisiones en este contexto.

ABSTRACT The diagnosis of Attention Deficit Hyperactivity Disorder - ADHD is quite complex. Contextual factors may influence it, and its treatment may involve different interventions. Institutions in several countries have promoted the participation of users in treatment decisions. In Brazil, it is provided by the Unified Health System. This study investigated the decision-making process in treating children with ADHD indicators from the perception of 8 public mental health services professionals interviewed individually. Data were examined through thematic analysis, revealing challenges related to excessive demand for services and the complexity of the diagnostic process. The involvement of users and family members in the decisions was perceived as partial, generally occurring after elaborating the therapeutic plan by the teams, and involving difficulties in communication between professionals and patients and differences of interests between children and their families. These aspects may be addressed in future studies and interventions to facilitate and improve the quality of the decision-making process in this context.

Experiences of Family Caregivers Providing Home Care to Older Patients With Cancer: A Qualitative Study.

BACKGROUND: Older patients with cancer receive anticancer therapy in outpatient settings, and care-related issues may occur after discharge, which often requires family caregivers (FCs) to play a significant role in providing cancer care at home. However, relatively few studies have been focused on exploring the care experiences of these FCs. PURPOSE: The aim of this study was to explore the care experiences of FCs caring for older family members with cancer at home. METHODS: A qualitative study design and in-depth individual interviews were used to explore the at-home care experiences of FCs of older patients with cancer. The research was conducted in chemotherapy outpatient settings of a medical center in northern Taiwan. Content analysis was used to analyze data. The analyses focused on first extracting meaningful units from the text and then inducting categories from these units and determining the major themes. RESULTS: Twenty FCs were interviewed. The three themes identified included (a) increased information needs and challenges in diet preparation and treatment decision making, (b) personal and patient-induced emotional stress, and (c) life rebalancing through the care experience. CONCLUSIONS/IMPLICATIONS FOR PRACTICE: The findings highlight the educational requirements, especially related to meeting personal dietary needs and obtaining psychological support, for FCs caring for older patients with cancer to help them rebalance their life.

The caring experiences of family caregivers for patients with advanced cancer in Uganda: A qualitative study.

BACKGROUND: Cancer morbidity and mortality is rising in sub-Saharan Africa. Given this rise, family caregivers play an integral role in provision of quality cancer care services. This study explored the family caregivers (FCGs)/relatives' experiences of caring for patients with advanced cancer (stage 3 or stage 4) in Uganda. METHODS: This was a descriptive qualitative study exploring the lived experiences of FCGs of patients with advanced cancer attending care at the Uganda cancer institute. We purposively recruited twelve FCGs and conducted face-to-face in-depth interviews using an interviewer-guided semi-structured questionnaire. Data were analyzed by thematic analysis. RESULTS: The age range of participants was 19 to 49 years. Most participants were children of the patients (n = 7), had attained tertiary education (n = 7), and had taken care of their loved ones for at least one year (n = 10). Six themes emerged from data analysis; (i) caring roles, (ii) caring burdens, (iii) role conflict, (iv) health system tensions, (v) support and motivation, (vi) caring benefits, lessons and recommendations. CONCLUSION: Study findings highlight the fundamental role of FCGs in the care of their loved ones, and illuminate the neglected physical, psychological and social challenges of family caregivers amidst health system tensions and conflicting roles. The needs of family caregivers should be embedded within cancer care, prevention and control programs particularly in low resource settings.

A study of grief experience interviews with family members of patients with advanced malignant tumors based on noninvasive death index monitoring.

OBJECTIVE: To explore the grief experiences of family members of patients with advanced malignant tumors before and after death. METHODS: This study used both quantitative and qualitative research methods. A total of 10 people with family members with terminal malignant tumors were chosen and assessed five times according to a specific non-invasive mortality index and the Distress Thermometer scale. Additionally, the participants attended an in-depth interview. RESULTS: The grief experiences of the bereaved included their knowledge of and attitude towards death, the physical and mental conditions of the family members of patients in the terminal stage, the needs of family members, and the response to death and growth of those family members. CONCLUSIONS: The grief experience interviews of family members of patients with advanced malignant tumors are universal. It is suggested that the nursing staff should pay attention to the emotional experience of the bereaved after the death of the patient throughout the whole nursing process, including the continuous follow-up during the home period. It is hoped that the implementation of grief counseling methods in the later stage can help the bereaved to successfully go through the grieving period, prevent grief disorders, and help them return to society.

Predictors of Healthcare Utilization in Family Caregivers of Persons With a Primary Malignant Brain Tumor.

ABSTRACT: BACKGROUND: Negative physical health results from the emotional stress of providing care to a family member with a primary malignant brain tumor; however, the downstream effects on caregivers' healthcare utilization (HCU) are unknown. This analysis examined associations between caregivers' emotional health and markers of HCU during the 6 months after patients' diagnoses. METHODS: Caregivers' self-report HCU data from a longitudinal study with 116 neuro-oncology caregivers were analyzed. Healthcare utilization was operationalized as number of prescription medications, reporting visits to primary care providers (PCPs), nature of PCP visit, number of comorbid conditions, and change in comorbid conditions. Potential predictors were caregivers' depressive symptoms (Center for Epidemiologic Studies-Depression Scale), hours providing care per day, mastery (Pearlin and Schooler), and burden (Caregiver Reaction Assessment). Logistic mixed effects modeling were used. RESULTS : Caregivers with higher levels of depressive symptoms ( P < .01), anxiety ( P = .02), burden related to schedule ( P = .02), and abandonment ( P < .01) were more likely to report worsening comorbid conditions. Those with higher mastery ( P = .02) were less likely to report worsening comorbid conditions. Caregivers who had a PCP visit and reported higher burden related to feelings of self-esteem ( P = .03) were more likely to report an illness-related visit. CONCLUSION : Findings suggest a relationship between neuro-oncology caregivers' emotional health and their HCU. Data highlight the importance of caregivers' PCPs identifying caregivers at risk for deteriorating health and increased HCU and intervene to ensure caregivers' self-care.