A qualitative study on emotional labor and work-family conflictin caregivers working in nursing homes / Un estudio cualitativo sobre el trabajo emocional y el conflicto trabajo-familia en cuidadores que trabajan en residencias de ancianos

A pesar de la evidencia que sugiere que el trabajo de cuidado implica la realización de trabajo emocional y experiencias de conflicto trabajo-familia, la relación de estas dos experiencias de trabajo sigue sin ser examinada. El presente estudio tiene como objetivo explorar las experiencias de desempeño del trabajo emocional y el conflicto trabajo-familia y sus vínculos entre los cuidadores que trabajan en hogares de ancianos. Para abordar la pregunta de investigación, utilizamos entrevistas semiestructuradas con una muestra de 24 mujeres cuidadoras que trabajan a tiempo completo en residencias de ancianos en el centro y norte de Portugal. Los resultados revelaron la presencia de trabajo emocional, Conflicto Trabajo-Familia y un impacto del trabajo emocional en Conflicto Trabajo-Familia basado en la tensión. En general, los resultados sugirieron que el trabajo emocional tiene efectos en Conflicto Trabajo-Familia, lo que apunta a la necesidad de que los directores de las instituciones de cuidado de ancianos consideren formas de reducir estos efectos nocivos en los trabajadores.(AU)

Despite evidence suggesting that care work involves the perfor-mance of emotional labor an experience of work-family conflict, the rela-tion of these two work experiences remain under-examined. The present study aims to fill this gap by exploring the experiences of performing emo-tional labor and work-family conflict and their links among caregivers working in nursing homes. To address the research question, we used semi-structured interviews with a sample of 24 female caregivers working full-time in nursing homes in the center and north of Portugal. The results revealed the presence of emotional labor, work-family conflict, and an im-pact of emotional labor in strain-based work-family conflict. Overall, the results suggested that emotional labor has effects on work-family conflict, pointing to the need that directors of elderly care institutions should con-sider ways of reducing these harmful effects on worker.(AU)

Habilidades de desempeño ocupacional en la enfermedad de Parkinson: relación con la calidad de vida relacionada con la salud y la carga del cuidador / Occupational performance skills in Parkinson’s disease: relationship with health-related quality of life and caregiver burden

Introducción: La progresión de la enfermedad de Parkinson (EP) da lugar a una pérdida de la capacidad para realizar actividades de la vida diaria y de la calidad de vida relacionada con la salud. Los objetivos de este estudio fueron establecer las relaciones entre las habilidades de desempeño ocupacional y la calidad de vida relacionada con la salud, y el grado de carga del cuidador en pacientes con EP. Pacientes y métodos: Participaron en el estudio 49 sujetos en diferentes estadios de EP según la escala de Hoehn y Yahr. Los pacientes fueron evaluados usando el cuestionario de la enfermedad de Parkinson (PDQ-39), el EuroQoL (EQ-5D), la evaluación de las habilidades motoras y de procesamiento (AMPS), y la entrevista de Zarit sobre la carga del cuidador (ZCBI). Resultados: Se encontraron fuertes correlaciones entre la sección de habilidades motoras de la AMPS y el PDQ-39 (r = –0,76; p = 0,001), y los cuestionarios EQ-5D (r = 0,72; p = 0,001), mientras que se encontraron correlaciones moderadas con las habilidades de procesamiento. Las habilidades de procesamiento de la AMPS se correlacionaron moderadamente con la movilidad y las actividades de la vida diaria. La ZCBI sólo se correlacionó débilmente con las habilidades motoras de la AMPS (r = –0,34; p = 0,02). Conclusión: Las puntuaciones decrecientes en la AMPS están estrechamente relacionadas con la pérdida de calidad de vida relacionada con la salud en pacientes con EP y, en menor medida, con el grado de carga del cuidador.(AU)

Introduction: The progression of Parkinson’s disease (PD) results in a loss of ability to performance activities of daily living and health-related quality of life. The objectives of this study were to establish the relations between occupational performance skills and health-related quality of life, and the degree of caregiver burden in PD patients. Patients and methods: Forty-nine patients at different stages of PD according to the Hoehn and Yahr scale participated in the study. Patients were assessed using the Parkinson’s Disease Questionnaire (PDQ-39), the EuroQoL (EQ-5D), the Assessment of Motor and Process Skills (AMPS), and the Zarit Caregiver Burden Interview (ZCBI). Results: Strong correlations were found between the motor skills section of the AMPS scale and the PDQ-39 (r = –0.76; p = 0.001), and the EQ-5D questionnaires (r = 0.72; p = 0.001), while moderate correlations were found with the process skills. AMPS process skills were moderately correlated with mobility and activities of daily living. The ZCBI was only weakly correlated with the AMPS motor skills (r = –0.34; p = 0.02). Conclusion: Declining scores on the AMPS scale are closely related to the loss of health-related quality of life in PD patients, and, to a lesser extent, with the degree of caregiver burden.(AU)

Quality of life in caregivers of aged stroke survivors in southern Brazil: Arandomized clinical trial / Qualidade de vida de cuidadores de idosos sobreviventes de AVC no sul do Brasil: Ensaio clínico randomizado / Calidad de vida en cuidadores de adultos mayores sobrevivientes de accidentes cerebrovasculares en el sur de Brasil: Ensayo clínico aleatorizado

Abstract Objective: to evaluate the effect of nursing home care interventions on the quality of life in family caregivers of aged stroke survivors. Method: a Randomized Clinical Trial, blinded for outcome evaluation. Forty-eighty family caregivers of aged stroke survivors participated in the study. The Intervention Group received three home visits by nurses one month after hospital discharge to provide stroke-related education (i.e., how to access health services and perform care activities) and emotional support. The Control Group received the usual guidance from the health services. Quality of life was assessed using the World Health Organization Quality of Life Assessment (WHOQOL-BREF) instrument and the Old Module(WHOQOL-OLD) 1 week, 2 months, and 1 year after discharge. Results: the caregivers were mainly women, children, or spouses. The caregivers in the Intervention Group and Control Group did not significantly differ in terms of their Overall Quality of Life at baseline. There was no interaction effect between group allocation and Overall Quality of Life(p=0.625) over time. However, there was an interaction effect for Social Relations(p=0.019) and Autonomy (p=0.004). Conclusion: the intervention exerted a statistically significant effect on the quality of life of family caregivers with respect to social relationships and autonomy. Trial registration: NCT02807012.

Resumo Objetivo: avaliar o efeito de intervenção educativa domiciliar de enfermagem na qualidade de vida de cuidadores familiares de idosos sobreviventes de acidente vascular cerebral (AVC). Método: Ensaio Clínico Randomizado, cego para avaliação de resultados. Quarenta e oito cuidadores familiares de idosos sobreviventes de AVC participaram do estudo. O Grupo de Intervenção recebeu três visitas domiciliares de enfermeiros, um mês após a alta hospitalar, para fornecer educação relacionada ao AVC (como acessar os serviços de saúde e realizar atividades de cuidado) e apoio emocional. O Grupo Controle recebeu as orientações habituais dos serviços de saúde. A qualidade de vida foi avaliada usando o instrumento Avaliação da Qualidade de Vida da Organização Mundial da Saúde (WHOQOL-BREF) e o Módulo Old (WHOQOL-OLD) em 1 semana, 2 meses e 1 ano após a alta. Resultados: os cuidadores eram principalmente mulheres, filhos ou cônjuges. Os cuidadores do Grupo Intervenção e do Grupo Controle não diferiram significativamente em termos de Qualidade de Vida Geral no início do estudo. Não houve efeito de interação entre a alocação do grupo e a Qualidade de Vida Geral (p=0,625) ao longo do tempo. No entanto, houve efeito de interação para Relações Sociais (p=0,019) e Autonomia (p=0,004). Conclusão: a intervenção apresentou efeito estatisticamente significativo na qualidade de vida dos cuidadores familiares no que diz respeito às relações sociais e autonomia. Registro do ensaio clínico: NCT02807012.

Resumen Objetivo: evaluar el efecto de intervenciones de atención domiciliaria de enfermería sobre la calidad de vida en cuidadores familiares de adultos mayores sobrevivientes de accidentes cerebrovasculares. Método: Ensayo Clínico Aleatorizado, cegado para la evaluación de los desenlaces. Los participantes del estudio fueron 48cuidadores familiares de adultos mayores sobrevivientes de accidentes cerebrovasculares (ACV). El Grupo Intervención recibió tres visitas domiciliarias a cargo de enfermeros un mes después del alta hospitalaria, en las que se les ofreció instrucción relacionada con ACV (es decir, cómo acceder a los servicios de salud y realizar las actividades inherentes a los cuidados) y apoyo emocional. Al Grupo Control se le brindó la orientación habitual de los servicios de salud. La calidad de vida se evaluó mediante el instrumento World Health Organization Quality of Life Assessment (WHOQOL-BREF) y el módulo Old(WHOQOL-OLD) 1semana, 2meses y 1año después del alta. Resultados: en su mayoría, los cuidadores fueron mujeres, hijos o cónyuges. Los cuidadores de los grupos Intervención y Control no presentaron diferencias significativas en términos de su Calidad de Vida general de base. La intervención no ejerció ningún efecto entre la asignación a los grupos y la Calidad de Vida general(p=0,625) con el transcurso del tiempo. Sin embargo, la intervención sí tuvo efecto sobre las Relaciones Sociales (p=0,019) y la Autonomía(p=0,004). Conclusión: la intervención ejerció un efecto estadísticamente significativo sobre la calidad de vida de los cuidadores familiares con respecto a las relaciones sociales y a la autonomía. Registro del ensayo: NCT02807012.

Factores promotores y amenazadores de Esperanza en cuidadores de niños con condiciones crónicas / Factors that promote and threaten Hope in caregivers of children with chronic conditions / Fatores promotores e ameaçadores da Esperança em cuidadores de crianças com condições crônicas

Objetivo: identificar los factores que promueven y amenazan la Esperanza en cuidadores familiares de niños de 2 a 3 años con condiciones crónicas. Método: estudio cualitativo, incluyendo 46 cuidadores familiares de niños con condición crónica de 2 a 3 años, egresados de dos Unidades de Cuidados Intensivos Neonatales. La recolección de datos ocurrió mediante entrevistas semiestructuradas guiadas por el Modelo de Intervención en Ayuda Mutua Promotora de Esperanza. Los datos fueron sometidos a análisis temático deductivo. Resultados: se identificaron como factores promotores de la Esperanza: la experiencia compartida con los miembros de la red social de apoyo; la relación con el niño; mejoría clínica del niño; espiritualidad; orientación positiva para el futuro. Se identificaron como factores amenazadores de la Esperanza: relaciones conflictivas y incredulidad con relación al niño por parte de personas cercanas; incertidumbres sobre el futuro; inseguridades sobre la capacidad de cuidar al niño. Conclusión: los factores amenazadores de Esperanza generaron sufrimiento, dolor, angustia, ansiedad y soledad en los cuidadores. Los factores promotores de Esperanza generaron consuelo, motivación, fuerza y alegría. Los hallazgos permiten a los enfermeros reconocer las fortalezas y debilidades de los cuidadores y promover la adopción de comportamientos que promuevan la Esperanza en los cuidadores de niños con condiciones crónicas.

Objective: to identify the factors that promote and threaten Hope in family caregivers of 2- to 3-year-old children with chronic conditions. Method: qualitative study with 46 family caregivers of children between 2 and 3 years old with a chronic condition, discharged from two Neonatal Intensive Care Units. Data was collected through semi-structured interviews guided by the Model for Intervention in Mutual Help Promoter of Hope. Data were submitted to deductive thematic analysis. Results: the following were identified as factors that promote Hope: The experience shared with members of the social support network; The relationship with the child; Clinical improvement of the child; Spirituality; Positive guidance for the future. The following were identified as factors that threaten Hope: Conflictual relationships and discredit of the child by close people; Uncertainties about the future; Insecurities about the ability to care for the child. Conclusion: the threatening factors of Hope generated suffering, pain, anguish, anxiety, and loneliness in caregivers. The promoting factors of Hope generated comfort, motivation, strength and joy. The findings allow Nurses to recognize the strengths and weaknesses of caregivers and adopt behaviors that promote Hope in caregivers of children with chronic conditions.

Objetivo: identificar quais são os fatores promotores e ameaçadores da Esperança em cuidadores familiares de crianças de 2 a 3 anos com condições crônicas. Método: estudo qualitativo, incluindo 46 cuidadores familiares de crianças com condição crônica de 2 a 3 anos egressas de duas Unidades de Terapia Intensiva Neonatal. A coleta de dados se deu por meio de entrevista semiestruturada orientada pelo Modelo de Intervenção em Ajuda Mútua Promotor de Esperança. Os dados foram submetidos à análise temática dedutiva. Resultados: foram identificados como fatores promotores da Esperança: A experiência compartilhada com membros da rede de apoio social; A relação com a criança; Melhora clínica da criança; Espiritualidade; Orientação positiva para o futuro. Foram identificados como fatores ameaçadores da Esperança: Relações conflituosas e descrença da criança por pessoas próximas; Incertezas sobre o futuro; Inseguranças sobre a capacidade de prestar os cuidados à criança. Conclusão: os fatores ameaçadores da Esperança geraram sofrimento, dor, angústia, ansiedade e solidão nos cuidadores. Os fatores promotores da Esperança geraram conforto, motivação, força e alegria. Os achados possibilitam que Enfermeiros reconheçam as potencialidades e fragilidades dos cuidadores e promovam a adoção de comportamentos promotores de Esperança em cuidadores de crianças com condições crônicas.

Teaching and learning strategies in Home Enteral Nutritional Therapy: Knowledge gains perceived by caregivers / Estratégias de ensino e aprendizagem na Terapia Enteral domiciliar: ganhos de conhecimentos percebidos por cuidadores / Estrategias de enseñanza y aprendizaje en Terapia Enteral domiciliaria: adquisición de conocimiento percibida por los cuidadores

Abstract Objective: to evaluate how different educational strategies contribute to knowledge gains perceived by caregivers of people using Enteral Nutritional Therapy. Method: a quasi-experimental study conducted in two stages: the first one included an interactive lecture class (LC) and the second was carried out in two groups: in-situ simulated skills training (ST) and reading of an educational booklet (EB). The caregivers answered a self-administered questionnaire to assess knowledge before and after the interventions; for the analysis, a generalized linear model with Poisson distribution was proposed and the comparisons were carried out using orthogonal contrasts. Results: the participants were 30 caregivers; evidence of a difference in knowledge between the t1and t0 moments is evidenced. The analysis of the final comparison about the knowledge gain between the EB and ST groups, according to Student's t, evidenced an estimated difference of -1,33, with 95% CI (-4.98; 2.31) and p-value=0.46. Conclusion: knowledge was further increased between the t1 and t0 moments, when compared to the t2 and t1 moments in both groups. When compared, we cannot conclude that one of the groups changed more than the other in relation to moment t0 and t2; thus, the study evidenced the knowledge gain after all the educational strategies in both groups.

Resumo Objetivo: avaliar como diferentes estratégias educativas contribuem para ganhos de conhecimento percebidos por cuidadores de pessoas em uso da Terapia Nutricional Enteral. Método: estudo quase-experimental realizado em duas etapas; a primeira contemplou uma aula expositiva dialogada (AE) e a segunda aconteceu em dois grupos: treino de habilidades (TH) simulado in situ e leitura da cartilha educativa (CE). Os cuidadores responderam um questionário autoaplicável para avaliação de conhecimentos em pré e pós-intervenções; para a análise foi proposto um modelo linear generalizado com distribuição Poisson e as comparações foram realizadas por contrastes ortogonais. Resultados: participaram 30 cuidadores, observou-se evidência de diferença de conhecimento entre os tempos t1 e t0. A análise da comparação final sobre o aumento do conhecimento entre os grupos CE e TH, por teste t-Student, evidenciou uma diferença estimada de -1,33, com IC 95% (-4,98; 2,31) e valor de p de 0,46. Conclusão: ocorreu uma maior elevação de conhecimento entre os tempos t1 e t0, quando comparada os tempos t2 e t1 em ambos os grupos. Quando comparados, não podemos concluir que um dos grupos mudou mais que o outro em relação aos tempos t0 e t2; assim, o estudo evidenciou o ganho de conhecimento após todas as estratégias educativas nos dois grupos.

Resumen Objetivo: evaluar cómo las diferentes estrategias educativas contribuyen a la adquisición de conocimiento percibida por los cuidadores de personas que utilizan Terapia Nutricional Enteral. Método: estudio cuasiexperimental realizado en dos etapas; la primera incluyó una clase expositiva dialogada (CE) y la segunda se desarrolló en dos grupos: entrenamiento de habilidades (EH) simuladas in situ y lectura del folleto educativo (FE). Los cuidadores respondieron un cuestionario autoadministrado para evaluar el conocimiento pre-posintervenciones; para el análisis se propuso un modelo lineal generalizado con distribución de Poisson y las comparaciones se realizaron mediante contrastes ortogonales. Resultados: participaron 30 cuidadores, había evidencias de la diferencia de conocimiento entre los tiempos t1 y t0. El análisis de la comparación final sobre el aumento de conocimientos entre los grupos FE y EH, mediante la prueba t de Student, mostró una diferencia estimada de -1,33, con un IC del 95% (-4,98; 2,31) y un valor de p de 0,46. Conclusión: hubo un mayor aumento del conocimiento entre los tiempos t1 y t0, que entre los tiempos t2 y t1 en ambos grupos. Al compararlos, no podemos concluir que uno de los grupos cambió más que el otro entre t0 y t2; por lo tanto, el estudio demostró que hubo adquisición de conocimiento después de todas las estrategias educativas en ambos grupos.

Young Adult Cancer Care Partners: A Theoretical Description of an Emerging Population with Unique Needs.

As the U.S. population's demographics shift, young U.S. adults are increasingly engaged in informal caregiving for aging generations. Yet, there is little research on the unique experiences and needs of young adults who take on caregiving roles for adult cancer patients. Herein we demonstrate through a theoretical description that young adult cancer care partners deserve distinct recognition in the cancer control continuum given the psychological, physical, financial, and social features unique to their cancer experience.

Interventions for Care Partners of People With Alzheimer's Disease or Other Related Neurological Conditions to Address Depression (2018-2022).

Systematic review briefs provide a summary of the findings from systematic reviews evaluated in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each systematic review brief summarizes the evidence on a theme related to a systematic review topic. This systematic review brief presents finding related to interventions for care partners for persons with Alzheimer's disease and related dementias.

The Children, Caregivers, and Community (C3) study of together growing strong: A protocol for an observational, place-based initiative in Sunset Park, Brooklyn.

Reaching population-level impact for families in poverty requires moving beyond a sole focus on individuals, to a wider focus on interactions between individuals and their broader environmental contexts. Place-based initiatives have emerged as a policy response to promote community-level change around these broader interactions between individuals and their local communities through addressing long-standing disparities in housing, employment, education, and health. Together Growing Strong (TGS) is one such place-based initiative focused on transforming the health, wellbeing, and development of young children and their families in Sunset Park, Brooklyn. The Children, Caregivers, and Community (C3) Study is an outcomes-based study designed to assess the trajectories of children and families in Sunset Park along indicators such as family health and wellbeing and child development in relation to TGS program participation. The aims, scope, and protocol of the C3 Study are the subjects of this paper.

Mobilizing morality: how caregivers in Vietnam handle the challenges of daily diabetes care.

BACKGROUND: As a chronic disease, type 2 diabetes (T2D) often involves long-term care obligations for patients' family members. Understanding the socially and culturally specific challenges that family caregivers face and how they cope with them is crucial in developing targeted and effective interventions to support both caregivers and patients with T2D. This research examined family caregiving for people with T2D living in rural northern Vietnam. Although there is a growing literature on family support in Vietnam, little is known about the personal experiences of family caregivers for people with T2D. This paper seeks to fill this gap revealing some of the challenges and coping strategies of family caregivers to people with T2D. METHODS: This qualitative study is based on ethnographic research using primarily semi-structured interviews with 21 caregivers to a person with T2D in Vietnam. The research was conducted in 2022 by a Vietnamese-Danish research team. Each interview was voice-recorded, transcribed verbatim and thematically coded. RESULTS: Four major challenges emerged from the analysis: physical health concerns, psychological exhaustion, economic burdens, and lack of support. Caregivers expressed motivation to overcome these challenges as they felt a deep sense of responsibility towards their family member with diabetes. The primary caregiver's sense of responsibility toward their family would often cause them not to share the burdens from caregiving with other family members to avoid burdening them as well. However, negative experiences from caregiving were decreased and positive feelings increased in the instances where caregiving was shared between multiple family members. CONCLUSION: While family members expressed motivation to take care of the patient because of moral obligations, some caregivers, specifically primary caregivers, did not want to burden other family members with care tasks and were reluctant to ask for assistance. For families who did share the caregiving tasks among several family members, some of the negative sentiments associated with caregiving were diminished. Having multiple members of a family forming a caregiving community thus motivated people in handling care challenges.

Control in the absence of choice: A qualitative study on decision-making about gastrostomy in people with amyotrophic lateral sclerosis, caregivers, and healthcare professionals.

BACKGROUND: Gastrostomy is recommended in amyotrophic lateral sclerosis for long-term nutritional support, however, people with amyotrophic lateral sclerosis and healthcare professionals perceive decision-making as complex. METHOD: To explore their perspectives on decision-making regarding gastrostomy, we used semi-structured interviews with people with amyotrophic lateral sclerosis, who had made a decision, and their caregivers; healthcare professionals were interviewed separately. Interviews were transcribed and analyzed thematically. RESULTS: In 14 cases, 13 people with amyotrophic lateral sclerosis and 12 caregivers were interviewed; and in 10 of these cases, 5 healthcare professionals. Participants described decision-making on gastrostomy as a continuous process of weighing (future) clinical need against their values and beliefs in coming to a decision to accept or reject gastrostomy, or to postpone decision-making, while being supported by loved ones and healthcare professionals. Participants described gastrostomy as inevitable, but retained agency through control over the timing of decision-making. They said physical necessity, experiences of loss and identity, and expectations about gastrostomy placement were important factors in decision-making. Decision-making was described as a family affair, with caregivers supporting patient choice. healthcare professionals supported people with amyotrophic lateral sclerosis during the decision-making process and respected their autonomy and values. People with amyotrophic lateral sclerosis stressed the importance of adequate information on the procedure and the benefits. CONCLUSION: People with amyotrophic lateral sclerosis feel in control of decision-making on gastrostomy if they are able to make their own choice at their own pace, supported by loved ones and healthcare professionals. Person-centered decision-making on gastrostomy requires early information exchange and repeated discussions with people with amyotrophic lateral sclerosis and their caregivers, incorporating their values and respecting patient choice.

Caregivers' use of herbal and conventional medicine to treat children with sickle cell disease at Jinja Regional Referral Hospital, Eastern Uganda: A cross-sectional study.

BACKGROUND: Evidence suggests use of herbal and conventional medicines in the treatment of Sickle Cell Disease (SCD). We examined factors associated with caregivers' use of combined herbal and conventional medicine to treat children with SCD. METHODS: A cross-sectional study was conducted at Jinja Regional Referral Hospital between January and March 2022. Caregivers of children with SCD aged 1 to 18 years attending the Sickle Cell Clinic were interviewed using structured questionnaires. We collected data on caregivers' socio-demographic characteristics, perceptions of and intentions to use either or both therapies, self-reported use of either or both therapies and community and health-related factors. A multivariable logistic regression model was computed to assess the factors independently associated with caregivers' use of combined therapy, using Stata version 15.0. RESULTS: 372 caregivers were interviewed. On average, respondents were aged 34.3 years (Standard Deviation [SD]: ±9.8 years). 37% (n = 138) of the caregivers reported the use of both herbal and conventional medicine, 58.3% (n = 217) reported use of only conventional medicine, while 4.6% (n = 17) reported use of herbal medicine only. Higher odds of using combination therapy were found in caregivers aged 60+ years (adjusted odds ratio [AOR] = 11.8; 95% CI: 1.2, 115.2), those with lower secondary education (AOR = 6.2; 95% CI: 1.5, 26.0), those who believed in the safety of herbal medicine (AOR = 3.3; 95% CI: 1.5, 7.6) and those who thought that use of both therapies were safe (AOR = 7.7; 95% CI: 3.5, 17.0). CONCLUSION: More than one-third of the caregivers reported use of combined herbal and conventional medicine, most of whom were older (>60%) and had lower secondary education. There is need for targeted health promotion to educate caregivers about the dangers of using both herbal and conventional medicines in treating children with SCD.

Teacher and Caregiver Perspectives on Water Is K'é: An Early Child Education Program to Promote Healthy Beverages among Navajo Children.

The Water is K'é program was developed to increase water consumption and decrease consumption of sugar-sweetened beverages for young children and caregivers. The pilot program was successfully delivered by three Family and Child Education (FACE) programs on the Navajo Nation using a culturally centered curriculum between 2020 to 2022. The purpose of this research was to understand teacher and caregiver perspectives of program feasibility, acceptability, impact, and other factors influencing beverage behaviors due to the pilot program. Nine caregivers and teachers were interviewed between June 2022 and December 2022, and a study team of four, including three who self-identified as Navajo, analyzed the data using inductive thematic analysis and consensus building to agree on codes. Five themes emerged, including feasibility, acceptability, impact, suggestions for future use of the program, and external factors that influenced water consumption. The analysis showed stakeholders' strong approval for continuing the program based on impact and acceptability, and identified factors that promote the program and barriers that can be addressed to make the program sustainable. Overall, the Water is K'é program and staff overcame many challenges during the COVID-19 pandemic to support healthy behavior change that had a rippled influence among children, caregivers, teachers, and many others.

The social, economic, emotional, and physical experiences of caregivers for women with female genital fistula in Uganda: A qualitative study.

ABSTRACTThis study aimed to explore the firsthand experiences of informal primary caregivers of women with female genital fistula in Uganda. Caregivers that accompanied women for surgery at Mulago National Teaching and Referral Hospital were recruited between January and September 2015. Caregivers participated in in-depth interviews and focus groups. Data were analysed thematically and informed adaptation of a conceptual framework. Of 43 caregivers, 84% were female, 95% family members, and most married and formally employed. Caregivers engaged in myriad personal care and household responsibilities, and described being on call for an average of 22.5 h per day. Four overlapping themes emerged highlighting social, economic, emotional, and physical experiences/consequences. The caregiving experience was informed by specific caregiver circumstances (e.g. personal characteristics, care needs of their patient) and dynamic stressors/supports within the caregiver's social context. These results demonstrate that caregivers' lived social, economic, emotional, and physical experiences and consequences are influenced by both social factors and individual characteristics of both the caregiver and their patient. This study may inform programmes and policies that increase caregiving supports while mitigating caregiving stressors to enhance the caregiving experience, and ultimately ensure its feasibility, particularly in settings with constrained resources.

Sequential multiple assignment randomised controlled trial protocol for developing an adaptive intervention to improve depressive symptoms among family caregivers of people with dementia.

OBJECTIVES: Family caregivers of people with dementia (FC-of-PWD) suffer from a high level of stress and depressive symptoms, which usually require different interventions at different stages. Although some standalone interventions such as behavioural activation (BA) and mindfulness practice (MP) have been shown to be potentially effective at reducing depressive symptoms, the best sequence and combination of these interventions for caregivers are unknown. This study aims to develop and identify a two-stage adaptive intervention with prespecified rules guiding whether, how or when to offer different interventions initially/over time to reduce depressive symptoms in FG-of-PWD. METHODS: A sequential multiple assignment randomised trial design will be adopted. 272 FG-of-PWD with mild to moderate depressive symptoms will be recruited from the community. Four two-stage, embedded adaptive interventions involving BA and MP of different sequences and dosages (eg, 8 weeks of BA followed by booster sessions for responders and 8 weeks of MP for non-responders) will be assigned to the participants following a set of decision rules. The primary outcomes will be depressive symptoms (measured using the Patient Health Questionnaire-9), assessed after the second stage of the intervention. Other outcomes, such as positive aspects of caregiving (measured using the Positive Aspects of Caregiving Scale), sleep quality (measured using the Pittsburgh Sleep Quality Index) and time points will also be assessed. The analyses will follow the intention-to-treat principle. Several process indicators (eg, engagement in meaningful activities and level of mindfulness) will also be assessed. The findings will have strong implications for the further development of psychosocial adaptive interventions to reduce depressive symptoms among FC-of-PWD. ETHICS AND DISSEMINATION: This study has received ethical approval from the Human Research Ethics Committee at The Hong Kong Polytechnic University (HSEARS20211223001). The findings will be presented at academic conferences and submitted to peer-reviewed journals for publication. TRIAL REGISTRATION NUMBER: NCT05634317.

Study protocol for NeuroCARE: a randomised controlled trial of a psychological intervention for caregivers of patients with primary malignant brain tumours.

INTRODUCTION: Caregivers of patients with primary malignant brain tumours experience substantial psychological distress while caring for someone with a progressive, life-limiting neurological illness. However, there are few interventions aimed at addressing the psychosocial needs of this population. We developed and are testing a population-specific, evidence-based, telehealth intervention (NeuroCARE) to reduce anxiety symptoms and improve psychosocial functioning in this caregiver population. METHODS AND ANALYSIS: This study is a non-blinded, randomised controlled trial of a psychological intervention for caregivers of patients with primary malignant brain tumours receiving care at the Massachusetts General Hospital Cancer Center or Dana-Farber Cancer Institute. We will enrol 120 caregivers who screen positive for heightened anxiety. Participants will be randomised 1:1 to the NeuroCARE intervention or a usual care control condition. Caregivers assigned to NeuroCARE will complete six individual telehealth sessions with a trained behavioural health specialist over 12 weeks. Caregivers randomised to the control condition will receive usual care, including possible referral to social work or other appropriate resources. Participants will complete self-report questionnaires at baseline and 11 weeks and 16 weeks postrandomisation. The primary outcome is anxiety symptoms at 11 weeks among NeuroCARE participants, compared with usual care. Secondary outcomes include caregiver-reported depressive symptoms, quality of life, caregiver burden, caregiving self-efficacy, perceived coping skills and post-traumatic stress disorder symptoms. We also will explore potential mediators of the NeuroCARE effect on caregiver anxiety symptoms. ETHICS AND DISSEMINATION: The study is funded by a Career Development Award from Conquer Cancer, the American Society of Clinical Oncology Foundation (award number 2019CDA-7743456038) and approved by the Dana-Farber/Harvard Cancer Center Institutional Review Board (Protocol #19-250 V.10.1). The study will be reported in accordance with the Consolidated Standards of Reporting Trials statement for non-pharmacological trials. Results will be presented at scientific meetings and in peer-reviewed journals. TRIAL REGISTRATION NUMBER: NCT04109209.

Economic evaluations of electronic health interventions for people with age-related cognitive impairment and their caregivers: A systematic review.

OBJECTS: Dementia has physical, social and economic impacts, causing considerable distress for people with age-related cognitive impairment (PWACI) and their caregivers. Electronic health (e-health) interventions can provide convenient education to improve the coping competence of caregivers and have become an important approach to supporting them. Understanding the economic evidence of e-health interventions will facilitate the decision making and implementation of integrating e-health into routine health services. The present review aimed to appraise economic evidence related to e-health interventions for PWACI and their caregivers. METHODS: We systematically searched multiple cross-disciplinary databases from inception to February 28, 2023. Two reviewers independently selected the trials, assessed the quality, and checked the data. A descriptive-analytical narrative method was used to analyze the review findings. RESULTS: Thirteen studies were analyzed, including 12 randomized controlled trials and one quasi-experimental study. All included studies were conducted in developed countries. The included studies reported limited economic information. There were six cost-effectiveness analysis, five cost-consequence analysis and one partial economic evaluation. The included studies were heterogeneous, and varied in quality. The results demonstrated that e-health multicomponent interventions can reduce the cost of health service utilization in short term (10-104 weeks). CONCLUSIONS: Few studies calculated the incremental cost-effectiveness ratio to evaluate the cost-effectiveness of e-health interventions. Preliminary evidence indicates that e-health interventions can reduce the cost of health service utilization in the short term, but the cost-effectiveness of e-health interventions hasn't been identified. More robust evidence is needed to clarify the value of e-health interventions for PWACI and their caregivers.

Barriers to childhood asthma care in sub-Saharan Africa: a multicountry qualitative study with children and their caregivers.

OBJECTIVES: This study identifies barriers and provides recommendations to improve asthma care in children across sub-Saharan Africa, where qualitative data is lacking despite high rates. DESIGN: One of the aims of our National Institute for Health Research global health research group 'Achieving Control of Asthma in Children in Africa' was to use qualitative thematic analysis of transcribed audio recordings from focus group discussions (FGDs) to describe barriers to achieving good asthma control. SETTING: Schools in Blantyre (Malawi), Lagos (Nigeria), Durban (South Africa), Kampala (Uganda) and Harare (Zimbabwe). PARTICIPANTS: Children (n=136), 12-14 years with either asthma symptoms or a diagnosis and their caregivers participated in 39 FGDs. All were recruited using asthma control questions from the Global Asthma Network survey. RESULTS: There were four key themes identified: (1) Poor understanding, (2) difficulties experienced with being diagnosed, (3) challenges with caring for children experiencing an acute asthma episode and (4) suboptimal uptake and use of prescribed medicines. An inadequate understanding of environmental triggers, a hesitancy in using metred dose inhalers and a preference for oral and alternate medications were identified as barriers. In addition, limited access to healthcare with delays in diagnosis and an inability to cope with expected lifestyle changes was reported. Based on these findings, we recommend tailored education to promote access to and acceptance of metred dose inhalers, including advocating for access to a single therapeutic, preventative and treatment option. Furthermore, healthcare systems should have simpler diagnostic pathways and easier emergency access for asthma. CONCLUSIONS: In a continent with rapidly increasing levels of poorly controlled asthma, we identified multiple barriers to achieving good asthma control along the trajectory of care. Exploration of these barriers reveals several generalisable recommendations that should modify asthma care plans and potentially transform asthma care in Africa. TRIAL REGISTRATION NUMBER: 269211.

Analysis of the comprehensive needs of primary caregivers of hospitalized colorectal cancer patients and characteristics analysis of high comprehensive needs population.

To identify the care needs of primary caregivers of colorectal cancer (CRC) patients and specify the characteristics of high-needs caregivers. A cross-sectional survey was conducted on the primary caregivers of CRC patients using the Comprehensive Needs Assessment Tool in Cancer Caregivers. The care needs and the characteristics of caregivers with high needs were identified using the Chi-square test and Logistic regression. The results of the survey of 364 primary caregivers of CRC patients showed that the top 2 dimensions of caregiver needs were the healthcare staff and the information dimension. The characteristics of caregivers with high demand for healthcare staff included on-the-job, a family per capita monthly income of <4000 yuan, and the CRC patients they took care of paid medical expenses through self-pay/public expense/rural insurance. The characteristics of caregivers with high information needs included living in the city, on-the-job, a family per capita monthly income of <4000 yuan, and the CRC patients they took care of paid medical expenses through self-pay/public expense/rural insurance. In clinical settings, the information needs of primary caregivers of CRC patients should be given due attention. Particular attention should be paid to the primary caregivers of CRC patients who live in cities, are on-the-job, have a per capita monthly income of <4000 yuan, and pay medical expenses through self-pay/public/rural insurance.