UNASSIGNED: Our aim was to better understand and raise awareness of the diagnosis journey and quantify any barriers for timely diagnosis of haemophagocytic lymphohistiocytosis (HLH), to support patients\' struggle with diagnosis and reduce time to diagnosis.
UNASSIGNED: Patients diagnosed with, or caregivers for those diagnosed with primary or secondary HLH and physicians involved in the treatment of HLH were recruited. Quantitative interviews were undertaken with patients/caregivers to quantify key elements of the diagnosis journey, followed by qualitative interviews with participants. Interviews took place between March-May 2021.
UNASSIGNED: Thirty-three patients/caregivers and nine physicians took part in this mixed methods study. Lack of physician awareness of HLH was a common frustration for patients/caregivers, causing delayed diagnosis. All physicians indicated bone-marrow testing is a key step in the diagnosis process, and some patients/caregivers had frustrations around testing. Emergency care doctors, although not usually involved in the diagnosis process, were among the most-seen specialists by patients/caregivers. Patients/caregivers suggested potential improvements in available information, such as providing information on treatment options and condition management.
UNASSIGNED: Patients/caregivers and physicians agreed on the need to raise overall awareness of HLH signs/symptoms among priority groups of physicians to recognise how signs/symptoms can progress and develop. Improvements in the testing process and communication would directly impact the speed of diagnosis and support patients/caregivers during the diagnostic journey, respectively.
UNASSIGNED: Raising awareness of key issues, such as signs/symptoms, tests and diagnostic procedures, and improved communication and support for patients/caregivers, are key to speeding up HLH diagnosis and improving outcomes.

The article examines the experiences of family caregivers engaged in the provision of long-term care for their relatives with complex health needs within the Latvian context. Semi-structured interviews were conducted with seven caregivers who provide care in cases of dementia, depression, schizophrenia, opioid use, Down syndrome and mild cognitive impairment. A thematic analysis of interview transcripts revealed common themes, such as the initial experiences when encountering a family member\'s disorder and the subsequent reactions, as well as the quest for support and resources. Variations mainly centered around differences in formal aspects and childhood experiences of care. Caregivers reported risk factors such as guilt, lack of support from family and friends, financial difficulties, deficiency of professional care and ignoring the caregiver\'s own needs. Awareness of personal resources, values and limits, coping with personal stigma and improved overall quality of life were identified as protective factors. The findings underscore several preventive measures that social and mental health services could implement to mitigate the adverse effects of caregiving on caregivers\' lives.

The world\'s population is experiencing an aging process, which is resulting in an increase in diseases such as Alzheimer\'s disease. Consequently, more and more people need care, which can lead to overload and harm to their family\'s quality of life.
UNASSIGNED: Identify the psychosocial factors affected by the burden on family caregivers of people with Alzheimer\'s disease.
UNASSIGNED: Forty-nine family caregivers of people with Alzheimer\'s disease, from a city in Minas Gerais, Brazil, participated in the study. They filled out a form of sociodemographic variables, and answered the Burden Interview Scale (BI-Zarit), Quality of Life in Alzheimer\'s Disease Caregiver version (CQoL-AD), the Depression, Anxiety and Stress Scale (DASS-21), the Mindfulness and Awareness Scale (MAAS) and the Clinical Dementia Rating Scale (CDR).
UNASSIGNED: All participants were female with an average age of 54.26 (±8.99). Daughters comprised 77.55% of the sample, and 34.69% were sole caregivers. The Bi-Zarit scale positively and significantly correlated with DASS-21 Depression (r=0.440; p=0.002), DASS-21 Anxiety (r=0.415; p=0.003), DAAS-21 Stress (r=0.583; p<0.001). On the other hand, it showed a negative correlation with MAAS (r=-0.429; p=0.002) and CQoL-AD (r=-0.533; p<0.001).
UNASSIGNED: This study demonstrates that family caregivers of people with Alzheimer\'s disease may be overloaded, and that the heavier the burden, the lower level of attention, the worse quality of life and the greater the possibility for the caretaker to present symptoms of depression, anxiety, and stress.
A população mundial vive um processo de envelhecimento que está resultando no aumento de doenças, como a doença de Alzheimer. Consequentemente, cada vez mais pessoas necessitam de cuidados, o que pode gerar sobrecarga e prejuízos à qualidade de vida de seus familiares.
UNASSIGNED: Identificar os fatores psicossociais afetados pela sobrecarga em cuidadores familiares de pessoas com doença de Alzheimer.
UNASSIGNED: Participaram do estudo 49 cuidadores familiares de pessoas com doença de Alzheimer, de um município de Minas Gerais, Brasil. Os participantes preencheram um formulário de variáveis sociodemográficas e responderam à escala de Sobrecarga (BI-Zarit), à escala de Qualidade de Vida na Doença de Alzheimer versão Cuidador (CQdV-DA), à escala de Depressão, Ansiedade e Estresse (DASS-21), à escala de Atenção Plena e Consciência (MAAS) e à escala de Avaliação Clínica de Demência (CDR).
UNASSIGNED: Todos os participantes eram do sexo feminino, com idade média de 54,26 (±8,99). As filhas representaram 77,55% da amostra e 34,69% eram cuidadoras exclusivas. A escala Bi-Zarit correlacionou-se positiva e significativamente com a DASS-21 Depressão (r=0,440; p=0,002), DASS-21 Ansiedade (r=0,415; p=0,003), DAAS-21 Estresse (r=0,583; p<0,001). Por outro lado, mostrou correlação negativa com MAAS (r=-0,429; p=0,002) e CQoL-AD (r=-0,533; p<0,001).
UNASSIGNED: Este estudo demonstra que os cuidadores familiares de pessoas com doença de Alzheimer podem estar sobrecarregados e que, quanto maior a sobrecarga, menor o nível de atenção, pior a qualidade de vida e maior a possibilidade de apresentar sintomas de depressão, ansiedade, estresse.

BACKGROUND: Family caregivers have a vital role to play in palliative care for chronically ill patients. In Taiwan, caregiver demographics are evolving, with the number of male caregivers increasing. Gender differences influence psychosocial behaviours, thought processes and communication styles. In healthcare, acknowledgement of gender differences facilitates effective delivery of high-quality care.
OBJECTIVE: The aim of this study is to explore male caregivers\' decision-making process for palliative care for chronically ill family members.
METHODS: This study employed grounded theory to generate a substantive theory of male caregivers\' decision-making process for palliative care for chronically ill family members. We recruited 22 male participants from three inner-city teaching hospitals in Taiwan.
RESULTS: Regarding the decision-making process of palliative care of chronic ill family, where male caregivers do not want their loved ones suffering anymore, the male caregivers\' decision-making process was impacted, first, by caregivers\' views on the last stage of life; second, by their wish for good care during the end of life; and third, by their conviction that the patients\' wishes should be respected. Furthermore, caregivers\' philosophy of life and death is also a supportive ground for decision-making. This philosophy was influenced by their education in palliative care, financial status and religious beliefs and practices. The core category emerging from this study is encapsulated by a participant\'s assertion, \'How difficult is it? There are no male and female differences\'.
CONCLUSIONS: We found that palliative care experiences of male caregivers are important for the decision-making process for palliative care for their chronically ill family members. Caregivers want their loved ones to receive good care as the last step in life, to respect their wishes and no more suffering for the patient. Therefore, health professionals should be familiar with the palliative care process that caregivers go through to offer updated information when needed.

BACKGROUND: Obesity in children is a critical public health issue in developed countries and developing countries. The establishment of health-related behaviors in childhood, significantly influenced by parental involvement, underscores the need for effective intervention measures.
OBJECTIVE: This original research is a systematic review and meta-analysis that aimed to investigate the impact of parental involvement on the prevention and management of childhood obesity, focusing on outcomes such as BMI z-score, exercise levels, screen time, dietary self-efficacy, and percentage body fat.
METHODS: Adhering to the PRISMA guidelines, we conducted a systematic review and meta-analysis of 12 randomized controlled trials (RCTs) identified through comprehensive searches of PubMed, Scopus, Web of Science, and the Cochrane Library, including RCTs involving children aged 2-18 years with parental or caregiver participation, reporting on the specified outcomes. Data analysis was performed using RevMan 5.3, employing a random effects model.
RESULTS: A total of 5573 participants were included. The meta-analysis revealed a significant reduction in BMI z-score (MD = -0.06, 95% CI: -0.09 to -0.02, p = 0.005, I2 = 58%), a non-significant increase in exercise levels (SMD = 0.26, 95% CI: -0.01 to 0.52, p = 0.05, I2 = 52%), and a significant reduction in screen time (MD = -0.36 h per day, 95% CI: -0.61 to -0.11, p = 0.005, I2 = 0%). Dietary self-efficacy also improved significantly (MD = 0.59, 95% CI: 0.12 to 1.05, p = 0.01, I2 = 0%). However, changes in percentage body fat did not reach statistical significance (MD = -1.19%, 95% CI: -2.8% to 0.41%, p = 0.15, I2 = 0%).
CONCLUSIONS: Parental involvement in childhood obesity interventions significantly impacts BMI z-score, exercise levels, screen time, and dietary self-efficacy but not percentage body fat. These findings highlight the importance of engaging parents in obesity prevention and management strategies.

Duchenne muscular dystrophy (DMD) is a disease that primarily affects males and causes a gradual loss of muscle strength. This results in a deterioration of motor skills and functional mobility, which can impact the performance of various occupations. Individuals with DMD often rely heavily on caregivers to assist with daily activities, which can lead to caregiver burden. A case study was conducted to explore and describe potential variations in the performance of a young adult diagnosed with DMD and his caregivers resulting from the integration of smart speakers (SS)-controlled Internet of Things (IoT) devices in the home environment. The study also examined the potential of SS as an environment control unit (ECU) and analysed variations in caregiver burden. Smart devices and SS were installed in the most frequently used spaces, namely, the bedroom and living room. The study employed WebQDA software to perform content analysis and Microsoft Excel to calculate the scores of the structured instruments. The implementation of the IoT-assisted environment compensated for previously physical tasks, resulting in a slight increase in independent performance and reduced demands on caregivers.

Double-Duty Carers (DDCs) refer to people who work in the healthcare industry while also providing unpaid care to relatives, friends, or neighbours. The expectations placed on DDCs is expected to grow, and these employees already experience a high caring burden. As such it is important to understand how best to support their health and wellbeing. This paper explores DDCs\' wellbeing during the COVID-19 pandemic, focusing an understudied factor: their mobility constraints. Following the Mobility of the Care Economy framework and a qualitative research design, it does so through a thematic analysis of 16 semi-structured interviews with female DDCs in Southern Ontario, Canada. Once data saturation was reached, three mobility pathways during the pandemic were identified, all of which negatively affected DDCs wellbeing. First, some COVID-19 policies (e.g., testing requirements) resulted in increased mobility demands and increased spatiotemporal constraints. Second, the closure of institutions that care for dependents (schools, daycares, day centres) resulted in forced reduced mobility, which increased financial stress. Finally, indirect mobility effects were identified: the reduced mobility of other informal carers increased the workload and emotional strain on DDCs. The paper concludes with a discussion of mobility-related policies that could improve DDC wellbeing.

National dementia strategies are government policies that guide the provision of appropriate support for people living with dementia. These strategies, developed through extensive stakeholder engagement, should be tailored to the cultural and demographic needs of a country. Using a mixed methods survey design, this study explored the aims of the Dementia Action Plan (2018-2022) for Wales (UK) around assessment, diagnosis, and post-diagnostic support, and assessed whether these are being realized. Further, it sought to gain insight from people living with dementia and their carers around how the experience may be improved for others in the future, as the development of the next iteration of the Action Plan is anticipated. Respondents included 71 people, affected by typical and rarer types of dementia, living in both rural and urban areas. Findings suggest both positive and negative experiences, reflecting a \'postcode lottery\' of service provision. Attainable recommendations for improvement were made by respondents, which would ultimately likely be cost-effective and reduce strain on formal services. The findings reported in this paper concur with those reported by people living with dementia in other countries, indicating their relevance for policymakers beyond Wales.

The rapid aging and increasing care demands among the elderly population present challenges to China\'s health and social care system. The concept of aging in place has prompted the implementation of integrated community care (ICC) in the country. This study aims to provide empirical insights into the practices of integrated care policies and approaches at the community level. Data for this study were collected through six months of participatory observations at a local community health service center in a southern Chinese city. Semi-structured interviews were conducted with the multidisciplinary community care team to gather frontline formal caregiver perceptions of ICC, thereby facilitating a better understanding of the obstacles and opportunities. Qualitative analysis revealed four themes: the ICC delivery model and development strategies within the community care scheme, the person-centered guiding principle, and the challenges and struggles encountered by formal caregivers within China\'s current ICC system. The case study presented herein serves as a notable example of the pivotal role of primary care in the successful implementation of elderly care within a community setting. The adoption of a private organization-led approach to medico-social integration care in the community holds significant potential as a service delivery model for effectively addressing a wide range of elderly care issues.

BACKGROUND: While the literature has highlighted the immense challenges in caring for family members, it is still unclear what the needs of family carers of persons with intellectual disability and challenging behaviours are and what has worked for them. This study aims to examine 60 parents\' and siblings\' experiences in managing the challenging behaviours of their adult family member with intellectual disability whilst living at home.
METHODS: A qualitative grounded theory approach using semi-structured interviews will be adopted. Purposive sampling will be used to recruit family carers who live with adult persons with intellectual disability and use one community service in Hong Kong. Three special schools for persons with intellectual disability from northern China will be approached.
RESULTS: This study will aim to provide an in-depth understanding of the experiences of family carers and compare the different circumstances they face when managing the challenging behaviours of their adult relatives with intellectual disability in their family home.
CONCLUSIONS: Although this study targets adults with intellectual disability, the findings will provide a point of reference for adolescents and younger persons who exhibit demanding and challenging behaviours and live with their families. Recommendations can guide the development of appropriate strategies to strengthen services for family carers.