This article aims to investigate the implications of grief among family members of COVID-19 victims; verify the prevalence of prolonged grief symptoms; and identify family members\' expectations regarding end-of-life care for their loved ones affected by COVID-19. Descriptive, cross-sectional research, with a quantitative-qualitative approach. Data collection was performed using an online questionnaire, guided by the PG-13 instrument. Descriptive and inferential statistics were applied. The results were presented descriptively and with the aid of tables. The study sample included 142 family members, mostly female, who presented emotional, physical, social, and financial implications as a result of grief. A prevalence of prolonged grief symptoms was observed in 11.4% of the mourners with more than six months and 29.6% of those with less than six months. Three thematic categories were identified: transparency in communicating the health situation, access to moments of farewell, and promotion of comfort in care actions. The symptoms of Prolonged Grief Disorder have a significant association with the degree of kinship. In final care, family members\' expectations were classified as: permission for a dignified farewell, effective communication, and promotion of comfort and care.
O objetivo deste artigo é investigar implicações do luto em familiares de vítimas da COVID-19; verificar a prevalência de sintomas de luto prolongado; identificar expectativas dos familiares acerca do cuidado em fim de vida de seus entes acometidos por COVID-19. Pesquisa descritiva, transversal, com abordagem quanti-qualitativa. Coleta de dados mediante questionário on-line, norteado pelo instrumento PG-13. Aplicou-se estatística descritiva e inferencial. Os resultados foram apresentados de forma descritiva e com auxílio de tabelas. Amostra de 142 familiares, maioria do sexo feminino, que apresentaram implicações emocionais, físicas, sociais e financeiras em decorrência do luto. Houve prevalência de sintomas de luto prolongado em 11,4% dos enlutados com mais de seis meses e 29.6% dos que tinham menos de seis meses. Foram identificadas três categorias temáticas: transparência na comunicação da situação de saúde, acesso a momentos de despedida e promoção de conforto nas ações de cuidado. Os sintomas de Transtorno de Luto Prolongado possuem associação significativa com o grau de parentesco. Nos cuidados finais as expectativas dos familiares foram classificadas em: permissão para despedida digna, comunicação efetiva e promoção de conforto e cuidado.

BACKGROUND: Surgical procedures cause a certain level of anxiety in the relatives of the patients, it has been observed that heart surgeries cause more anxiety.
OBJECTIVE: To determine the effects of informing patients\' relatives with short messages on anxiety levels during cardiovascular surgery.
METHODS: The study was conducted as a randomized controlled research investigation from October 1, 2015, to December 31, 2022, at the cardiovascular surgery operating room of a university hospital and included 84 patient relatives (42 experimental and 42 control group). The Patient Relatives Information Form and the State and Trait Anxiety Inventory were used to collect the study data. The patients\' relatives in the experimental group were informed by short messages (preparations for surgery have begun, your relative\'s surgery has started, your relative\'s surgery is still ongoing, and your relative\'s surgery is completed) during the surgery. State Anxiety Inventory was re-administered to all patients\' relatives after cardiovascular surgery. The study was registered with ClinicalTrials.gov (NCT05157789).
RESULTS: It was found that the postoperative State Anxiety Inventory score of the experimental group was significantly lower than that of the control group (P < 0.001). The difference between preoperative and postoperative state anxiety scores was significantly higher in the experimental group (P < 0.001).
CONCLUSIONS: Informing the patients\' relatives with a short message during cardiovascular surgery significantly reduced the level of anxiety.

BACKGROUND: The health-related quality of life instrument with 8 items (HINT-8) was developed to measure health-related quality of life (HRQoL) in Korea. However, the HINT-8 has not yet been validated among the family caregivers of people with dementia (PwD).
METHODS: A cross-sectional pilot study.
OBJECTIVE: The study aimed to examine the convergent and discriminant validity of the HINT-8 among family caregivers of individuals with dementia.
METHODS: Forty-seven family caregivers of PwD.
METHODS: HINT-8 was compared with the 5-level EQ-5D (EQ-5D-5L) to assess its convergent and discriminant validity. Additionally, the association between the two instruments assessing HRQoL was examined using the short-form Bédard-Zarit Burden Interview (SZBI).
RESULTS: The HINT-8 was a promising and valid HRQoL instrument for family caregivers of PwD. There was a significantly high correlation between the overall HINT-8 and EQ-5D-5L indices (r = 0.85, p < .001). The HINT-8 had acceptable psychometric properties compared to the commonly used EQ-5D-5L, as indicated by the subdomains associated with family caregivers\' burden measured by the SZBI.
CONCLUSIONS: Future studies should compare the HINT-8 with existing dementia carer-specific QoL instruments among a larger study sample to enhance its statistical power and confirm its reliability and structural validity.

BACKGROUND: The role of non-kin caregivers, such as friends, neighbours, and acquaintances, in providing end-of-life care is significant but often overlooked in research and policy discussions. These caregivers provide extensive support for individuals in end-of-life care, in addition to or instead of family members. However, there is limited evidence in the literature regarding the experiences, burdens, and benefits of non-kin caregivers.
OBJECTIVE: The aim of this research is to examine the role and contributions of non-kin caregivers in end-of-life care. The study intends to uncover their experiences, associated challenges, benefits, and requirements for support.
METHODS: In order to achieve this objective, a mixed-methods approach will be employed, gathering data through structured questionnaires from approximately 150 non-kin caregivers and in-depth interviews with up to 25 participants. The questionnaires will measure the impact, burden, and benefits of caregiving. The Burden Scale for Family Caregivers, the Benefits of Being a Caregiver Scale, the Family Inventory of Needs, the Positive Mental Health Scale, a Graphic Closeness Scale, and selected items of the Eurofamcare Common Assessment Tool for socio-demographic and caregiving-related data will be used. Quantitative data will be analysed using IBM SPSS Statistics 28 for descriptive analysis and group comparison. The objective of the qualitative in-depth interviews is to obtain a comprehensive picture of the personal experiences, motivations and support needs of members of the non-kin caregivers cohort, who are as heterogeneous as possible in terms of gender, socio-economic status, and facility with the German language. The qualitative data from the interviews will be examined using MAXQDA software, adopting a grounded theory approach for analysis.
CONCLUSIONS: This research will develop a comprehensive framework that captures the nuanced experiences of non-kin caregivers at the end of life. The framework will identify areas where support for non-kin caregivers is lacking and where further research is needed.
BACKGROUND: The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00033889; date of registration: 05 April 2024). The study is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.

OBJECTIVE: To construct a conceptual framework on the process of family resilience during the first year following childhood leukaemia diagnosis.
METHODS: A longitudinal qualitative interview study.
METHODS: A longitudinal qualitative study following a grounded theory methodology was employed. Semi-structured interviews were conducted with parents of children with leukaemia in a general hospital. The participants were recruited through purposive and theoretical sampling and longitudinal engagement was achieved by conducting interviews at 1, 3, 6, and 12 months after the leukaemia diagnosis. The core category and categories were saturated following the enrolment of parents of children with leukaemia. Data collection and analyses were performed simultaneously.
RESULTS: Sixteen parents of children with leukaemia participated. The core category of \'families living with childhood leukaemia\' refers to the process of family resilience during the first year following childhood leukaemia diagnosis, which includes three phases: (1) destruction and resiliency period; (2) adjustment and consolidation period; and (3) growth and planning period.
CONCLUSIONS: This study explored the dynamic, complex and continuous processes of resilience among families coping with childhood leukaemia during the first year following diagnosis. Further research should design tailored family interventions that characterise the different phases of family resilience, aiming to support family well-being, integrity and functioning.
UNASSIGNED: Both families and healthcare professionals must create an enabling environment that supports families coping with difficulties. Understanding the different phases of family resilience allows healthcare professionals to provide holistic care that meets the demands of families with childhood leukaemia.
CONCLUSIONS: Unique knowledge emerged about the family\'s resiliency process when facing childhood leukaemia, suggesting a family-led revolution in understanding and managing childhood leukaemia. Therefore, the development of phased, resilience-based family interventions is imperative.
UNASSIGNED: This study was reported using the COREQ checklist.
UNASSIGNED: Patients contributed via study participation.

OBJECTIVE: To explore the experiences and support needs of parents in the first 6 months after paediatric critical care.
METHODS: Longitudinal qualitative design.
METHODS: Sequential semi-structured qualitative interviews were conducted with a sample of 28 parents in succession at 1 month and at 6 months (n = 22) after their child\'s discharge from paediatric critical care using purposive sampling. Data were analysed using the adapted five-stage framework analysis.
RESULTS: Data were developed into eight synthesized themes, three domains and an overarching theme: Regaining Normalcy. Families of children requiring medical treatment at 6 months showed signs of adaption to daily care routines. The two domains were Parental Emotional Health and Parental Social Health. Parental Transitional Health, a third domain, was added to the Post Intensive Care Syndrome-paediatric framework. Parents were forward-looking and discussed emotional health, relating to current caregiving issues. Emotional attention was related to present challenges and concerns about current health and possible readmission to the hospital. In terms of Parental Social Health, families isolated themselves for infection control while remaining connected with families using chat applications. Parents were selective to whom they allowed access to their lives. The impact of parental transitional health was evident and emphasized the daily challenges associated with integration back to home life. Flexible work arrangements allowed working parents to support caregiving needs in the first 6 months after discharge.
CONCLUSIONS: In the first 6 months after paediatric critical illness, most families reported having moved past the experiences while having provoking memories of the admission period. Parents viewed the point of normalcy as child returned to school or when all medications were discontinued. Extension of transitional support can facilitate discharge experiences between paediatric critical care and normalcy. The findings highlight the importance of understanding the medium- and longer-term impact of paediatric critical care.
CONCLUSIONS: What problem did the study address? ○ Limited understanding of long-term parental experiences and support needs after PICU discharge. What were the main findings? ○ Most families regained normalcy when child returns to school or when medications were discontinued. Some families continued to show signs of adaptations at 6 months after PICU discharge. Where and on whom did the research have an impact? ○ The research has an impact on improving the understanding of long-term parental experiences and support needs after PICU discharge, informing clinical practice, guiding policy development and shaping parental support programs.
UNASSIGNED: We reported this study using the COREQ guidelines.
UNASSIGNED: Prior to confirming the interview guide, three parents of critically ill children actively participated by reviewing and providing feedback on its content. They provided suggestions to refine the wording and ensure clarity to enhance the participants\' understanding. By including the perspectives of these parents, we aimed to improve the overall quality and relevance of the interview guide.

BACKGROUND: Self-efficacy of patients on hemodialysis is considered a main component of the successful management of chronic kidney diseases. The self-efficacy of these patients may be influenced by many individual and social factors. This study aimed to assess the association between perceived self-efficacy and social support by patients on hemodialysis treatment and the resilience of their families.
METHODS: This cross-sectional study was conducted on 183 patients and 183 families of hemodialysis patients in the largest hemodialysis center in northwest of Iran. Data was collected from July to December 2021 using chronic kidney disease self-efficacy, multidimensional perceived social support (MSPSS), and the Walsh family resilience questionnaire (WFRQ). The collected data were analyzed by SPSS software using descriptive and inferential statistical tests.
RESULTS: The findings showed that the mean score of patients\' self-efficacy was 171.63 ± 38.19 in a possible range of 25 to 250. Moreover, the mean score of perceived social support was 62.12 ± 16.12 in a possible range of 7 to 84. The mean total score of family resilience was 119.08 ± 26.20 in a possible range of 32 to 84. Also, the results of the study showed a positive and significant relationship between the self-efficacy of patients with their perceived social support and the resilience of their families (p < 0.01).
CONCLUSIONS: The results of the study showed that there is a significant relationship between patient self-efficacy and family resilience and social support received in chronic kidney patients undergoing hemodialysis. Therefore, it is suggested to consider practical strategies in the field of family resilience and social support to improve patients\' self-efficacy.

BACKGROUND: There is limited understanding of how social determinants of health (SDOH) impact family decision-making when seeking surgical care for children. Our objectives of this study are to identify key family experiences that contribute to decision-making when accessing surgical care for children, to confirm if family experiences impact delays in care, and to describe differences in family experiences across populations (race, ethnicity, socioeconomic status, rurality).
METHODS: We will use a prospective, cross-sectional, mixed methods design to examine family experiences during access to care for children with appendicitis. Participants will include 242 parents of consecutive children (0-17 years) with acute appendicitis over a 15-month period at two academic health systems in North Carolina and Virginia. We will collect demographic and clinical data. Parents will be administered the Adult Responses to Children\'s Symptoms survey (ARCS), the child and parental forms of the Adverse Childhood Experiences (ACE) survey, the Accountable Health Communities Health-Related Social Needs Screening Tool, and Single Item Literacy Screener. Parallel ARCS data will be collected from child participants (8-17 years). We will use nested concurrent, purposive sampling to select a subset of families for semi-structured interviews. Qualitative data will be analyzed using thematic analysis and integrated with quantitative data to identify emerging themes that inform a conceptual model of family-level decision-making during access to surgical care. Multivariate linear regression will be used to determine association between the appendicitis perforation rate and ARCS responses (primary outcome). Secondary outcomes include comparison of health literacy, ACEs, and SDOH, clinical outcomes, and family experiences across populations.
CONCLUSIONS: We expect to identify key family experiences when accessing care for appendicitis which may impact outcomes and differ across populations. Increased understanding of how SDOH and family experiences influence family decision-making may inform novel strategies to mitigate surgical disparities in children.

BACKGROUND: Cancer is a disease that transcends what is purely medical, profoundly affecting the day-to-day life of both patients and family members. Previous research has shown that the consequences of cancer are greatly aggravated in patients at the end of life, at a time when they must also grapple with numerous unmet needs. The main objective of this study was to obtain more in-depth insight into these needs, primarily in patients with end-stage cancer nearing death.
METHODS: Semi-structured interviews were conducted in Spain with cancer patients at the end of life (n = 3) and their family members (n = 12). The findings from the interviews were analyzed using qualitative thematic analysis and a grounded theory approach.
RESULTS: Four major themes emerged from the interviews that explored the needs and concerns of patients with cancer at the end of life: (1) physical well-being (2) emotional well-being (3) social well-being and (4), needs relating to information and autonomous decision-making. The interviews also shed light on the specific needs of family members during this period, namely the difficulties of managing increased caregiver burden and maintaining a healthy work-life balance.
CONCLUSIONS: A lack of support, information and transparency during a period of immense vulnerability makes the end-of-life experience even more difficult for patients with cancer. Our findings highlight the importance of developing a more in-depth understanding of the needs of this population, so that informed efforts can be made to improve palliative healthcare and implement more comprehensive care and support at the end of life.

UNASSIGNED: We explored how family caregivers perceive decision-making regarding the care of nursing home residents.
UNASSIGNED: This qualitative study used Flemming\'s Gadamerian-based research method. In person semi-structured interviews about decision-making concerning residents\' care were conducted with 13 family members (nine women, four men) of residents of three Norwegian nursing homes.
UNASSIGNED: The following themes emerged: Excessive focus on autonomy threatens resident wellbeing and safety. Resident wellbeing is the caregiver\'s responsibility. Resident wellbeing serves as a guiding principle.
UNASSIGNED: The family members of residents and the nursing home caregivers disagreed about the significance of upholding resident autonomy to respect residents\' dignity. The family members held that not all instances where residents refused care reflect autonomy situations as care refusal often does not reflect the resident\'s true values and standards but rather, stems from barriers that render necessary care actions difficult. In situations where residents refuse essential care or when the refusal does not align with the residents second-order values, the family members suggested that caregivers strive to understand the causes of refusal and seek non-coercive ways to navigate it. Hence, the family members seemed to endorse the use of soft paternalism in nursing homes to safeguard residents\' wellbeing and dignity.