BACKGROUND: When older persons with dementia are admitted to hospital, they often feel disoriented and confused and their cognitive impairment may worsen, purely due to the sudden change in their environment. As such hospital design is recognised as an important aspect in the care and well-being of older persons with dementia. As the number of persons with dementia is increasing, the experience of admission to a hospital with, for example, single rooms is more relevant than ever.
OBJECTIVE: This scoping review aimed to identify, explore and conceptually map the literature reporting on what older people with dementia and their families experienced during admission to a hospital with single room accommodation. We followed the Joanna Briggs Institute recommendations for undertaking a scoping review. In addition, we used the Preferred Reporting Items for Systematic reviews (PRISMA-ScR) Checklist, which assisted the development and reporting of this scoping review.
RESULTS: We included 10 sources within a time frame of 23 years (1998-2021). The sources originate from Europe, Australia and Canada. We identified three conceptual maps: Safety and security, Privacy and dignity and Sensorial stimulation. Our review demonstrates that the themes of the three conceptual maps are experienced as mutually interdependent for the older persons with dementia and their families.
CONCLUSIONS: We conclude that it is not merely the single room design that determines what the older persons with dementia and their families experience as important; the exposure to sensorial stimulation and the presence of well-trained staff taking a dignified patient-centred approach are also crucial for their experience of high-quality nursing care.

BACKGROUND: The emergence of COVID-19 profoundly influenced the dynamics within intensive care units, significantly altering the patient-family experience. As the pandemic unfolded, the longstanding practice of using physical restraints for patient safety persisted, introducing new challenges in healthcare settings. This study explored the ramifications of these enduring safety measures on family members of ICU patients during the pandemic, illuminating their lived experiences and the psychological impact of seeing their loved ones restrained.
OBJECTIVE: To explore family members\' lived experiences with physical restraints in the ICU during COVID-19 and inform improvements in patient-centered care.
METHODS: Utilizing hermeneutic phenomenology, the study engaged ten family members in detailed interviews to gain an understanding of their experiences with ICU physical restraints during COVID-19. Conducted at a northeastern U.S. hospital, the collected narratives underwent thematic analysis within a sensemaking framework, yielding a profound understanding of family perspectives.
RESULTS: Family members faced challenges in understanding and coping with physical restraints, revealing a need for improved healthcare system support for family sensemaking and well-being.
CONCLUSIONS: The study advocates integrating empathetic communication and family engagement into ICU care practices, underlining the importance of sensemaking during healthcare crises.

Although family and school experiences play an important role in adolescents\' adjustment during the transition to high school, most prior studies investigated the effects of these experiences in isolation; their joint implications for both adolescents\' concurrent and long-term adjustment outcomes are less clear, and the potential role of individual characteristics within such associations remains understudied. Based on 525 10th graders (Mage = 15.48, SDage = 0.71, 43.6% boys) who participated in a longitudinal study, the present research aimed to identify distinct family and school experience profiles among first-year high school students and examine their associations with adolescents\' internalizing problems and externalizing problems, both concurrently and 18 months later. Latent profile analysis revealed four distinctive profiles: thriving, low resources-moderate family risk, developmental stress-high parental conflicts, and developmental stress-high peer victimization profiles. The other three profiles (vs. the thriving profile) reported significantly higher levels of concurrent internalizing problems; while these differences diminished after 18 months. However, the enduring impacts of these profiles on internalizing problems persisted among adolescents with higher levels of environmental sensitivity. Additionally, adolescents characterized by two developmental stress profiles (vs. the thriving profile) exhibited significantly higher levels of externalizing problems both currently and longitudinally. Findings underscore the importance of identifying at-risk populations among adolescents during the transition to high school by including both family and school experiences when examining environmental influence on their adjustment, as well as the necessity to take individual environmental sensitivity into account when examining these associations.

The onset of the COVID-19 pandemic and subsequent lockdowns in March 2020 disrupted the lives of families across India. The lockdown related restrictions brought forth a multitude of challenges including loss of employment, social isolation, school closures and financial burdens. Specifically, it also resulted in the restriction of health-care services for children with neurodevelopmental disabilities.
This qualitative study was conducted as a part of a larger trial in India to understand the experiences of families of young children with autism during the pandemic. In-depth interviews were carried out with 14 caregivers residing in New Delhi, India.
Our findings identified pandemic and lockdown\'s universal impacts on family life and financial stability stemming from job loss, business closure, and salary deductions, affecting quality of life of families. Furthermore, COVID-19 pandemic\'s impact on autistic children was evident through limited access to essential services and financial challenges related service interruptions even after resumption of services. The lockdown\'s novelty also affected children\'s behavior, with both challenging behavioral changes and positive impacts. Primary caregivers, predominantly mothers, assumed additional responsibilities in household tasks, schooling, and therapy administration. While some these experiences were universally experienced, a few of these improved outcomes for autistic children. Despite challenges, parents expressed gratitude for their family\'s safety and well-being during the difficult time.
These findings inform service provision for vulnerable families and offer implications for designing interventions such as credit schemes for families, guidance and resources for establishing and maintaining routines of children with autism, adopting flexible and adaptable approaches to service delivery, and special provisions for children with autism to be able to maintain their routines outside of home. Furthermore, the study highlights the need for comprehensive support, including educational resources and stress management counselling to empower parents in supporting essential care and routines for their children during such unprecedented times.

Background: Individuals with disabilities and their families, among the disadvantaged groups in society, have encountered increased hardships accessing support and services in various social contexts, such as education, health, transportation, rehabilitation, and social services. Thus, it is essential to examine parents\' experiences as a background catalyzer to improve the currently available services and provide psychological and social support. This study examined the experiences of families of children with disabilities who were in Turkey during the pandemic\'s early stages, and yielded suggestions based on these experiences. Method: A phenomenological design was used in this study, and semi-structured interviews were conducted with 10 parents of children with disabilities. Findings: Three themes emerged from data analysis: (a) quarantine, (b) education, and (c) children with disabilities. Conclusions: The findings revealed the importance of taking necessary precautions for individuals with disabilities and their families to access social services. Additionally, findings underline the essentiality of providing psychological support to families while providing and extending family education.

The COVID-19 pandemic affected families globally. Empirical research has been explored to understand the impact of COVID-19 on families across countries, however, there are limited findings of how COVID-19 has affected the daily realities of families in South Africa. This study used an exploratory qualitative research approach to explore the experiences of COVID-19 for South African families. Findings suggest that the negative outcomes of COVID-19 experienced by South African families included a shift in the daily routines, restrictions on family events, lack of socialization and loss of connections, family conflicts, financial constraints as well as psychological impacts. On the contrary, the positive outcomes included increased family time and communication, cleanliness, and good health status, and improved financial management. Implications for future research should include research focused on the health impacts of COVID-19 on diverse family structures, family compositions, and family dynamics. In-depth research and findings can assist in developing policies and interventions for families.

OBJECTIVE: This research aimed to explore psychosocial problems experienced by families of early adolescents with leukemia.
METHODS: This phenomenology research was done during December 2019-August 2020 and involved eighteen families (47 family members) of early adolescents (10-14 years old) with leukemia. Participants were recruited by using purposive sampling and snowball techniques. Data were collected by using in-depth interviews and non-participatory observations until data saturation. Content analysis was used for data analysis. Member checking and triangulation methods were confirmed for trustworthiness.
RESULTS: The families\' perception on psychosocial problem experiences included three themes and nine sub-themes. The first theme was dealing with adolescent\' emotional changes with sub-themes, namely, emotional responses to the illness, compensation for the suffering, and self-showing. The second theme was parents\' social isolation with sub-themes, namely, cancer-stigma, burden of care, and jealousy to non-cancer families. The last theme was emotional distress struggles with sub-themes, namely, feeling worried, guilty, and depressed.
CONCLUSIONS: Leukemia diagnosis in early adolescents causes psychosocial problems affecting the family lives. Health care providers need to concern and support the families and the adolescents so that they can pass through the difficulties with positive adjustments.

Investigating the daily life experiences of patients using Continuous Glucose Monitoring (CGM) can highlight the benefits and barriers in using this system for people with type 1 diabetes (T1D). Semi-structured qualitative interviews were conducted with the caregivers of 10 children aged <9 years, all of whom had been treated for T1D and had used CGM >6 months. These interviews were analyzed using the content analysis approach and from these interviews, four meta themes emerged: metabolic control, barriers to CGM use, CGM use in daily life, and comparison with fingersticks. Families reported the following as benefits of CGM: pain relief, better hypoglycemia and hyperglycemia management, increased control over diet and social life, reduced worries at school and during the night, and convenience in entrusting the child to the care of others. Cost, concerns related to accuracy and reliability of measurements, insertion, adhesion and removal issues all emerged as barriers to CGM use. The most prominent issue was the economic burden of CGM. Families accept this burden, even though it is challenging, as their experiences in using CGM are positive and they feel that CGM is necessary for T1D management.

Background Respite care has traditionally been conceptualised as a short residential break which allows families a break from caring responsibilities. In recent years, alternative respite services have been developed which promote greater social integration and normalisation for people with intellectual and other disabilities. Specific aim: The present study sought to explore the views of service managers and families on the definitions, aims, outcomes and general experiences of these programmes among a sample of adults with intellectual disabilities (ID) using a range of alternative respite services. Method Participants were managers of respite services for people with ID (n = 6) and family members (predominantly parents, n = 32) of adults receiving respite services from these organisations. All participants were provided with appropriate information on the study and gave consent. Semi-structured interviews were used to explore participants\' perspectives on alternative respite provision for adults with ID. Data were analysed using thematic analysis, with multiple analysts involved to allow for reflection on the interpretation of data. Findings Managers and families showed diversity in the conceptualisations of respite services, with themes highlighting the importance of the break for both people with ID and families, as well as a clear focus on the needs of and developmental outcomes for the person with ID. As such respite was viewed as both a model of service and an outcome for families and individuals with ID. These differing views appeared to have implications for views on who was the target beneficiary of respite. Discussion The present study reflects alternative respite as a diverse experience for people with ID, their family members and the service providers supporting them. Nevertheless, views were generally positive. Further consideration of the nature of respite services beyond the traditional conceptualisation is warranted.

BACKGROUND: Transition to adult health care for young adults with medical complexity (YAMC) is challenging and much work needs to be done in this area. The Oregon Center for Children and Youth with Special Health Needs participates in a federally-funded Collaborative Improvement and Innovation Network (CoIIN) to improve the quality of care for children with medical complexity.
OBJECTIVE: This study aimed to explore the experiences of Oregon families of YAMC who had recently transitioned to adult health care providers, and obtain recommendations for transition from family members, to inform the development of the CoIIN quality improvement project.
METHODS: We recruited caregivers of YAMC, ages 18 through 22 years, using a purposive sampling approach and conducted semi-structured interviews with 12 parents and grandparents. We analyzed the interview data to generate themes and sub-themes.
RESULTS: Families described having little to no notice about transitioning out of pediatric care and reported that their providers did not communicate with them about the steps needed to ensure a continuation of care into adulthood. Poor transition processes contributed to gaps in needed care, decline in health status of the young adults and psychological burden on the family. Families had to take on the responsibility of meeting the transition needs of YAMC and faced challenges in finding adult providers.
CONCLUSIONS: The results of this study suggest that YAMC and their families cared for by Oregon health care settings are not adequately prepared for, or supported in, the transition from pediatric to adult health care.