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Background: Patients with head and neck cancer (HNC) have to cope with a multitude of treatment-related adverse effects that impact their quality of life (QoL) post-treatment completion. The presence of family resilience could potentially foster individual resilience and might contribute to patients' QoL. However, this interconnection has not been confirmed., Objective: To explore the relationships between family resilience, individual resilience, and QoL in patients with HNC and to determine whether individual resilience in HNC patients functions as a mediator between family resilience and QoL., Methods: From September 2022 to June 2023, a cross-sectional survey was conducted among 185 patients with HNC recruited through convenience sampling from a tertiary care hospital in Jiangsu Province, China. Self-report measures of family resilience, individual resilience, and QoL were assessed. Relationships were examined by Pearson's correlations. Structural equation models were used to assess whether individual resilience played a mediating role between family resilience and QoL., Results: There were significant positive correlations between QoL and both family resilience ( r  = 0.43, P  < .01) and individual resilience ( r  = 0.59, P  < .01). Moreover, family resilience had an indirect influence on QoL through its effect on individual resilience (β = 0.319, 95% CI: 0.336-0.815)., Conclusion: Family resilience emerges as a significant positive factor capable of enhancing QoL for patients with HNC by bolstering their resilience. To mitigate the detrimental effects of inadequate individual resilience on QoL of patients with HNC, it is advised to implement interventions focused on enhancing family resilience., China Clinical Trials Registry Number: ChiCTR2300067612., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Visitation plays a number of positive roles for critically ill patients and their families. It reduces the physical and mental stress of intensive care unit (ICU) patients and their families and allows family members to participate in patient care. Visit prohibition during the COVID-19 pandemic has raised unprecedented challenges to patients, family members, and health care providers., Objective: This qualitative study aimed to explore the experiences of families of patients in the ICU with no-visitor policies due to COVID-19., Methods: Data collection was conducted through 8 individual in-depth semi-structured interviews conducted between October 2021 and March 2022. Data analysis was performed following the qualitative method proposed by Colaizzi. The researchers independently analyzed the data, checked the findings, derived subthemes, and categorized them into overarching themes., Results: Four themes emerged from the data analysis: ( a ) experiencing emotional distress, ( b ) being fearful of in-person patient contact, ( c ) being dissatisfied with the access control policy in the ICU, and ( d ) making efforts to reach the patient., Conclusions: It is critical to provide support and develop interventions for families denied visitation with loved ones in ICUs. Since in-person visits are crucial for families, hospitals should establish clear and reasonable visitation guidelines, communicate effectively with families, and offer alternative methods for them to connect with loved ones in the ICU., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: The study had two aims: first, to investigate trends in socioeconomic inequalities in psychological distress and loneliness among Norwegian adolescents, and second, to study variation and covariation of psychological distress and loneliness within adolescents and between siblings within families., Methods: Multivariate mixed models were used to investigate trends in socioeconomic inequality in psychological distress and loneliness using three separate cohorts of Norwegian adolescents from the Young-HUNT study conducted in 1995-1997 (Young-HUNT1, n  = 8980), 2006-2008 (Young-HUNT3, n  = 8199) and 2017-2019 (Young-HUNT4, n  = 8066). Register data on parental education level was used as a marker of socioeconomic position (SEP), and a unique family number was used to identify adolescents belonging to the same family. A three-level multivariate mixed model was created, consisting of the outcomes at level 1, adolescents at level 2 and families at level 3., Results: No statistically significant difference in scores on loneliness and psychological distress was observed between low and high parental education level in Young-HUNT1, whereas in Young-HUNT4, low parental education level was associated with a higher score on both psychological distress (β = 0.09; 95% confidence interval (CI), 0.03-0.14) and loneliness (β = 0.12; 95% CI 0.07-0.17). Analyses of covariation between psychological distress and loneliness showed that they were correlated within adolescents and strongly correlated within families across all timepoints., Conclusions: Increasing socioeconomic inequalities in psychological distress and loneliness among Norwegian adolescents is worrisome. Further, the family seems to be an important arena for potential prevention of psychological distress and loneliness among adolescents, regardless of parental education level ., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Over the course of the last year and a half, the Coronavirus has swept across the world causing death and devastation to our geriatric population residing in long term care facilities, also known as nursing homes. This paper explores the complicated grief responses exhibited by individuals who were affected by nursing home resident COVID-19 deaths. Nursing home resident survivors, families of the deceased residents, and healthcare workers in this situation have experienced a wide variety of complicated grief responses that need to be addressed. To address this need, an application will follow regarding the usage of a garden memorial ritual and ceremony to help these grievers in their first steps of mourning., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

It is thought-provoking to reflect on the ways in which the idea of family arises within many leading-following situations, especially within work settings where coworkers may refer to each other as or name each other their "work family." In this paper, the author explored the ways in which the humanbecoming paradigm (Parse, 2021) and its models may be used to lead with others from a family view. There are many meaning-making moments within leading-following professional relationships that shape all constituents (families) over time. As in all unique disciplines, such as nursing, that have leadership and practice components, it is important that there is a theoretical framework serving as the foundation to co-build professional relationships., Competing Interests: Declaration of Conflicting InterestsThe author declared no potential conflicts of interest with respect to the authorship and/or publication of this review.

Background: Almost half the world's population lives in rural areas. How best to provide palliative care to rural populations is unclear. Privileging rural patient and family voices about their experiences of receiving care delivered via rural palliative care models is necessary., Aim: To identify the key palliative care elements that rural patients with palliative care needs and their families perceive to be critical to receiving the care and support they need to live well., Design and Data Sources: A systematic review and meta-synthesis registered with Prospero (CRD42020154273). Three databases were searched in June 2024. Raw qualitative data were extracted and analysed using Thomas and Harden's three-stage thematic synthesis methodology. Findings reported according to the PRISMA statement., Results: Of the 10,834 identified papers, 11 met the inclusion criteria. Meta-synthesis of extracted, raw quotes (n = 209) revealed three major themes: (1) Honouring the patient's existing relationship with their General Practitioner (GP); (2) strategically timed access to specialist services, clinicians and equipment is critical; and (3) a need to feel safe, prepared and supported., Conclusion: The strategic inclusion of specialists alongside primary care providers is integral to optimising rural palliative care models. General Practioners are central to these models, through being embedded in their communities and as the conduit to specialist palliative care services. Rural palliative care patients and families value responsive care, trajectory signposting, effective communication, 24/7 support and recognise the value of virtual health. Globally, positive public policy and funding is critical to ensuring access to GP-led, specialist-supported, rural palliative care models., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Every advanced cancer diagnosis brings enormous challenges to patients and their relatives on numerous levels: be it physical, practical, social challenges, or on a more personal level. While specific aspects have been researched before, an overarching approach is lacking., Aim: To understand the lived experiences of people with advanced cancer, to identify gaps along the cancer care continuum, to identify potential opportunities for meaningful interventions and to develop a theoretical framework for practitioners and researchers., Design: A qualitative study using in-depth interviews with patients, relatives, and care professionals. Interviews were transcribed verbatim and analysed using a conventional content analysis., Setting/participants: Fifty-four interviews with 17 patients from a university oncology department and palliative care service, 15 relatives and 22 care professionals from physicians to funeral directors. All interviewees were recruited by a German university hospital., Results: We developed a novel model describing the diagnosis with advanced cancer as a highly disruptive experience that threatens to challenge the integrity of personhood in cancer patients through four areas: communication, knowledge, relationships, and confidence. We were able to identify factors leading to disintegration in these areas and factors supporting a restoration of integrity of personhood., Conclusions: The developed model provides a more thorough understanding of patients lived experiences. It can help to develop new interventions along the cancer care continuum to support patients in the complex challenges they face. These interventions should focus on supporting the integrity of personhood., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Within the framework of the interpersonal theory of suicide, parent-child conflict in adolescence may be associated with suicidal ideation through increases in thwarted interpersonal needs (i.e., perceived burdensomeness and thwarted belongingness). Familism, a cultural value that emphasizes prioritizing familial interconnectedness and honor, may moderate the association between parent-child conflict and thwarted interpersonal needs. This study examined the relationship between parent-child conflict, familism, and suicidal ideation through the interpersonal theory of suicide. Participants were N = 250 psychiatrically hospitalized adolescents aged 12-17 years (Mage = 14.84, 60.8% female; 41.9% Hispanic, 21.5% African American/Black, 26.0% Caucasian). Participants completed survey and interview measures prior to discharge from psychiatric hospitalization. There was a significant conditional indirect effect of parent-child conflict on suicidal ideation through thwarted interpersonal needs [F (3, 246) = 54.41, p < .01], such that the strength of the indirect effects family conflict on suicidal ideation via thwarted interpersonal needs increased as familism increased. Findings indicate that the relationship between parent-child conflict and thwarted interpersonal needs may be exacerbated when levels of familism are also high. For youth who endorse high levels of familism, parent-child conflict may be particularly pernicious. Interventions targeting the family environment are needed to potentially improve adolescents' interpersonal functioning and protect against suicidal ideation., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Significantly fewer individuals with migration backgrounds than native-born individuals undertake advance care planning. Older adults with Turkish and Moroccan backgrounds represent one of the largest ageing non-Western minority groups in Europe. Their relatives could play important roles in facilitating or hindering advance care planning, but their views remain underexplored., Aim: To explore advance care planning knowledge, experience, views, facilitators and barriers among older Turkish and Moroccan adults' relatives in Belgium., Design: Qualitative thematic analysis of semi-structured interview data., Setting/participants: Twenty-two relatives of older Turkish and Moroccan adults in Brussels, Mechelen and Antwerp, recruited via general practitioners., Results: Participants had limited advance care planning knowledge and had not discussed it with healthcare professionals. Some found discussing end-of-life preferences with relatives beneficial; others opposed the discussion of specific topics or felt discussions were unnecessary, as they felt responsible for caregiving and trusted by their relatives to make future decisions. Barriers included personal and relational characteristics, emotional difficulty and perceived non-urgency. Facilitators included information in older adults' native languages, general practitioners' cautious initiation and the involvement of several family members., Conclusions: Relatives of older people with Turkish and Moroccan backgrounds are unfamiliar with advance care planning and have highly variable views on it. People should be given opportunities to discuss advance care planning in a culturally appropriate manner, and the diversity of perspectives regarding whether and how to engage in such planning should be recognised.ClinicalTrials.gov no. NCT05241301., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Family caregivers provide the majority of long-term care and support of older adults as they age or approach the end of life. Studies often refer to family caregivers as invisible because the American healthcare system, public policy, and society do not support or recognize their work. Family caregivers who provide care to older adults who live in rural areas face unique challenges due to the rural environment. The purpose of this study was to inductively develop a theoretical framework that explains the process of family caregiving to older adults who live at home in rural areas and require daily assistance while exploring their experiences regarding access, utilization, challenges, and effectiveness of patient healthcare services and caregiver resources in rural areas. The grounded theory method of Strauss and Corbin was used for sampling, data collection, and data analysis. Fifteen family caregivers who oversaw and/or provided care on a daily basis to an older adult living in two rural counties of New York State participated in the study. Data were collected through two semi-structured interviews with each participant, yielding 30 interviews. Findings revealed that family caregivers engaged in the process of orchestrating care by growing into caregiving, integrating technology, and utilizing networks when providing and managing caregiving. Understanding caregiving from the perspective of family caregivers engaged in the process can inform healthcare practice, healthcare education, and public policy and can support better outcomes for both older adults and their family caregivers., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Purposeless physiological monitoring at the end-of-life is not recommended. However, studies on how families feel regarding the death of patients with terminal cancer without continuous electrocardiographic monitoring (CEM) are lacking., Objectives: To explore the impact on the quality of care and the feelings and psychological distress experienced by families when CEM is not used during the 24 hours preceding a patient's death., Methods: In this multicenter cross-sectional, self-report questionnaires were distributed to 1087 bereaved families at Japanese specialized palliative care units in 2018., Results: Out of 671 responses, 394 valid responses were analyzed. Families of nonmonitored patients (NM-group) accounted for 79.2%, while those with bedside electrocardiogram monitoring (MB-group) and remote nurse station monitoring (MC-group) comprised 11.9% and 8.9%, respectively. In the NM-group, 85.5% expressed satisfaction without CEM, which was more than 10% lower than other groups. While 14% in the NM-group desired patient monitoring, families who received adequate explanations about CEM had lower proportions compared to the MB-group ( P = .021). Univariate analyses showed no significant differences in evaluations of the quality of care and families' psychological distress (mean scores of Overall Care Satisfaction, Care Evaluation Scale, Good Death Inventory, Brief Grief Questionnaires) across all groups., Conclusion: While the majority of NM-group were satisfied with their patient's care without CEM, the proportion of dissatisfied families was higher than in other groups. Although not using CEM is not a major hindrance to end-of-life care for patients with terminal cancer, providing sufficient explanations may be important for satisfactory care., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

This grounded theory study aimed to explore the subjective experiences of children living with Human Immunodeficiency Virus (HIV) from the perspective of children and their families in Indonesia. Twenty participants were interviewed, consisting of 12 children aged 9-18 years and eight family members. Using grounded theory analysis, this study identified three categories: 'coping with diagnosis', 'disclosing their status' and 'living with the stigma of HIV'. Participants responded with shock, denial, sadness, secrecy and often had misconceptions about the virus to the diagnosis of themselves or their children. After diagnosis, children with HIV and their families continuously lived with stigma stemming from individual and societal beliefs about the virus. This stigma manifested in actions such as isolation, disclosure avoidance, secrecy, deception and social rejection. Because of these stigmatisations, many of the participants decided not to disclose the child's HIV status and used status strategies such as telling lies, keeping secrets and keeping their distance. The participants offered insight into the need for comprehensive programs to address care gaps. This study highlights that health professionals need to develop practical guidelines to support families during the disclosure process, provide psychosocial care for children, and create stigma reduction interventions for children with HIV., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Despite rising rates of drug-related deaths (DRDs), the consequences of DRDs for bereaved family members are scarcely investigated. This study aimed to estimate the prevalence of prolonged grief (PG) symptoms in bereaved family members after DRDs, identify predictors of PG and examine whether symptom levels decrease with time. A cross-sectional design based on survey data from parents ( n = 93), siblings ( n = 78), children ( n = 24) and other family members ( n = 39) was conducted ( n = 234). Descriptive analyses, a multivariate linear regression, and ANOVA were performed. 60 family members (26%) suffered from high levels of PG symptoms after DRDs (parents 31.2%, siblings 21.8%, children 20.9%). The strongest associations were found between a high level of symptoms and 'months since the loss', 'suicidal thoughts' and 'withdrawal from others'. The ANOVA analyses showed that time does not always 'heal all wounds', and the bereaved who lost one to 2 years ago had the highest level of PG symptoms., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Excessive sugar intake poses a significant risk factor for non-communicable diseases. A positive healthy eating (PHE) intervention was developed to promote low-sugar dietary practices in families. The PHE intervention capitalized on positive psychological constructs to overcome barriers to health behavior change by helping families associate feelings of joy, gratitude, and savoring with healthy eating. In a cluster randomized controlled trial, 1983 participants from 1467 families were recruited in Hong Kong. PHE included a core and booster session. Data were collected at pre-intervention, post-intervention, and at 1-month and 3-month follow-up. Compared to the control, PHE showed greater increase in intention to change at post-intervention, engagement in low-sugar dietary practices individually and with family members at 3-month follow-up, and greater reduction in sugar-sweetened beverage intake at 1-month and 3-month follow-up. Intentions to change mediated PHE's effects on low-sugar dietary practices. Focus group interviews revealed the behavior-change process and family quality of life., Competing Interests: Declaration of conflicting interestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: The place of death of cancer patients is an important aspect of end-of-life care. However, little research has been conducted regarding factors that may influence the preferred and actual place of death in cancer patients and whether the patients die at their preferred place of death. In this study, we aimed to investigate the preferred and actual place of death for palliative cancer patients, and factors influencing these variables. Methods: Patients diagnosed with cancer and admitted to a palliative care team across three Swedish cities between 2019 and 2022 were asked for participation. Participants completed a questionnaire capturing sociodemographic data and preferred place of death. Further data regarding age, sex, and cancer type were collated at inclusion, and the actual place of death recorded for those deceased by 5-May-2023. Results: The study included 242 patients. A majority (79%) wanted to die at home which was the actual death location for 76% of the patients. When the place-of-death decision was made by the patient alone, 75% chose home, compared to 96% when decided jointly with relatives-a statistically significant variation (p = 0.0037). For the patients who wanted to die at home, 80% actually died at home, with insignificant disparities among subgroups. Conclusions: Most palliative cancer patients in this Swedish cohort preferred and achieved death at home. Involving relatives in decision-making may influence the preferred place of death, however larger studies are needed to comprehensively assess factors affecting the preferred and actual place of death in different subgroups of patients., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Ending familial co-residence, termed 'moving on' by participants, is an increasingly relevant life transition for people with a learning disability due to increasing life expectancy and policy developments. Nevertheless, there is an absence of research exploring this transition experience in a United Kingdom (UK) context. This constructivist grounded theory study therefore aimed to explore, conceptualise, and theorise the 'moving on' experiences of adults with a learning disability and their families. This article reports the experiences of five adults with a learning disability and nine family members in England, UK. Narrative interviews and creative storybook methods were used to collect data between April 2015 and May 2016. Constant comparative methods, theoretical sampling, and memo writing were used throughout data collection and analysis. Participants with a learning disability presented personal growth and greater life fulfilment over the course of the transition; they flourished. In parallel, family members relinquished their care responsibilities. Importantly, the iterative and reciprocal relationship between flourishing and relinquishing shows that ongoing family member involvement is crucial during and following relocation. Family members identified factors that potentially inhibit relinquishing: pressure to 'let go', different perceptions of independence between family members and service providers, inadequate future investment, and rapport with professional carers. These novel insights led to the generation of the first known mid-range theory concerning this transition, entitled 'Moving on: flourishing and relinquishing'. Findings will guide future research in this field and facilitate the design of appropriate support for people with a learning disability and their families., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Critical illness resulting in a pediatric intensive care unit (PICU) admission is a profoundly stressful experience for a child and their family. Increasing evidence for emotional and behavioral sequelae post-PICU emphasizes a need to provide better support for families throughout this period of care and recovery. The aim of this qualitative investigation was to identify salient and modifiable aspects of a critical care experience that can be addressed to better support families of critically ill children. Individual semi-structured interviews were conducted with 26 caregivers of children who survived a PICU admission. Interviews were audio-recorded and transcribed verbatim; themes were identified via thematic analysis. Caregivers were enrolled using convenience sampling from seven tertiary care PICUs in the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network. Themes from caregiver interviews were identified within two overarching categories containing three themes each. Advice for future PICU families: (1) Be intentional about caring for your own well-being, (2) speak up, ask questions, and challenge decisions you're not comfortable with, and (3) continue to engage with your child. Characteristics of a satisfactory PICU experience: (1) A caregiver-provider relationship of mutual trust established through clear communication and respectful collaboration, (2) hospital environments that provide physical and social supports to maintain humanity in healthcare, and (3) preparing families for care transitions. Targeted, interdisciplinary approaches to partner with families during critical care may improve their PICU experience and contribute to improved long-term outcomes for PICU survivors., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Increased patient advocacy has resulted in a shift toward more active patient engagement in the research. A scoping review was conducted to explore the literature on healthcare research priority settings wherein children, youths, or their families were involved in the priority-setting process. Six databases including MEDLINE, CINAHL, PsycINFO, Embase, Web of Science, and Global Health and the James Lind Alliance website were searched up until September 2019. All primary studies involving children (<18 years of age) or families in developing research priorities in health care were included. All retrieved references were uploaded into Covidence, and two independent reviewers screened the search results. Descriptive thematic analysis was used to identify common themes. A total of 30 studies with 4247 participants were included. Less than half of the participants ( n = 1237, (33%) were pediatric patients and their families. A total of 455 research priorities were identified. Three common themes emerged: (i) quality of care delivery, (ii) self-efficacy in health behaviors, and (iii) community engagement in care. This scoping review revealed priority research health topics from the perspectives of children, youths, or their families. The findings may be used as a foundation for future research to improve the health outcomes of children, youths, or their families according to their identified priorities., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: In the U.S., assisted living (AL) is increasingly a site of death, and anxiety about dying has been identified in long-term care residents and their caregivers. Communication about death and dying is associated with better quality of life and care at end of life (EOL)., Objective: To understand communication behaviors used by AL residents and their informal caregivers (i.e., family members or friends) related to death and dying, and address communication needs or opportunities applicable to EOL care in AL., Design: A thematic analysis of in-depth interviews and fieldnotes from a subsample of data from a 5-year NIA-funded study., Setting/subjects: Participants included 15 resident-caregiver dyads from three diverse AL communities in Atlanta, Georgia in the U.S., Measurements: Interview transcripts were coded for communication behavior. Concordances and discordances within dyads were examined., Results: We identified a typology of four dyadic communication behaviors: Talking (i.e., both partners were talking with each other about death), Blocking (i.e., one partner wanted to talk about death but the other did not), Avoiding (i.e., each partner perceived that the other did not want to communicate about death), and Unable (i.e., dyads could not communicate about death because of interpersonal barriers)., Conclusions: Older residents in AL often want to talk about death but are blocked from doing so by an informal caregiver. Caregivers and AL residents may benefit from training in death communication. Recommendations for improving advance care planning and promoting better EOL communication includes timing these conversations before the opportunity is lost., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Hospice is touted as an exemplary model for end-of-life care. However, there is little generalizable evidence estimating benefits of hospice at the national level. Using a national population-based probability sample of U.S. adults with weights applied (data collected Spring/Summer 2015), we conducted six logistic regression models to evaluate linkages between hospice involvement and end-of-life outcomes (pain, home death, presence of family, access to life-prolonging care, respect for spiritual/religious beliefs, financial burden) from N = 235 informal caregivers of decedents prior to death. Respondents were M = 55 years old (SD = 17), 55% female, 77% White, 91% non-Hispanic, and 71% had cared for a hospice recipient. In fully adjusted analyses, hospice users had better reported outcomes observed in two models: (a.) presence of family/friends at death (OR = 2.82, SE = .48, P < .05), and (b.) respect for spiritual/religious beliefs (OR = 9.52, SE = .73, P < .01). Hospice utilization was not statistically significant ( P > .05) in all other adjusted models. Although more research is needed, findings support claims that hospice remains a high quality option for end-of-life care in the U.S., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

A convergent parallel mixed methods design with qualitative data collection embedded in a quasi-experimental study was developed to examine the potential of three modalities of preparation for hospital discharge of the families of children with chronic diseases in terms of uncertainty levels and management of the disease at home. Caregivers of these children were divided into three groups: two experimental groups and one control group. Two scales were applied: one measured family management, and the other evaluated uncertainties in relation to the disease. In addition, an in-depth interview was conducted. Wilcoxon's test and the integrated response index were used in data analysis to compare performance between the groups. Inductive thematic analysis was employed for the qualitative data. The data were integrated, comparing the groups before and after preparation for hospital discharge. Twenty-five family caregivers completed this study. Data integration showed that the intervention group, in which the families developed planning to prepare for discharge in a dialogical way with professionals, presented better perceptions regarding care management when compared to structured guide and usual care groups. Participation of families in planning for hospital discharge showed a reduction in uncertainties regarding the disease and better care management of children at home., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Ethical bonds transformation is a cultural phenomenon in Taiwanese bereaved families. When the death event occurs, the absent status of the deceased invokes spontaneous change in whole family to cope with the irreparable loss. In the present study, 283 bereaved individuals were recruited to develop the ethical bonds transformation scale. Exploratory factor analysis has generated two factors: ethical bonds and symbolic bonds. Partial correlation has shown that ethical bonds was positively correlated with post-grief growth and negatively correlated with most of the grief related symptoms, indicating that ethical bonds might be a protective factor in the family grief process., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

It is well-known that interpersonal traumatic events can impact the physical and mental health of those indirectly exposed to the events. Less studied are populations of loved ones who have been indirectly exposed to interpersonal trauma. We conducted a scoping review to synthesize literature related to potential consequences of indirect interpersonal trauma exposure, specifically vicarious traumatization (VT) and vicarious posttraumatic growth (VPTG). We used the Joanna Briggs Institute methodology. Inclusion criteria included: (1) participants were indirectly exposed to the interpersonal trauma of a loved one in adulthood, (2) discussion of VT, VPTG, or related terms, (3) published peer-reviewed empirical journal articles, and (4) available in English. We used a three-step search strategy to find relevant articles. Keywords found from the first two steps were entered into PsycINFO, PsycArticles, PubMed, Scopus, and Web of Science databases. Reference lists of the included articles were also examined. The identified articles were then screened using the inclusion and exclusion criteria. Twenty-eight articles met inclusion and exclusion criteria. Twenty-six articles referenced VT or related terms, one referenced VPTG, and one referenced vicarious trauma keywords. Results of this scoping review are summarized by definitions, measures, key findings, and knowledge gaps. Future research should focus on vocabulary management, diverse samples, and VPTG in this population, including the identification or creation of appropriate measures., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Multiple debilitating symptoms and the progressive nature of Parkinson's disease (PD) affect carepartners' quality of life. Although, there is abundant knowledge on caregiver burden there is limited knowledge on PD carepartners' perceptions of caregiving., Aim: To understand family members' perception of their role, and of the challenges and rewards of PD caregiving., Method: Using a qualitative descriptive research design, we conducted semi-structured interviews with current and former PD carepartners (n = 16) . Interviews were audio-recorded, de-identified, and transcribed verbatim. Data were coded and analyzed to identify themes., Results: We identified 5 themes: (a) Unpredictability is the hardest part of caregiving. It was hard to cope with the unpredictable daily and longer-term fluctuations in PD symptoms; (b) Disease progression and multiple symptoms contribute to carepartners' emotional distress . Carepartners felt unprepared and were saddened by the patient's and their own losses; (c) Caring for a family member is not a "burden." Though stressful, carepartners resisted associating caregiving with the term "burden"; (d) Caregiving is a partnership. Carepartners saw their role as being less of "givers" and more of partners in disease management ; and (e) Caregiving is an opportunity for personal satisfaction, joy, and growth. Caregiving was seen as a "gift" that enabled carepartners to express love and experience personal growth., Conclusions: Despite challenges PD carepartners view their role as "partners" in the management of the disease and find meaning and strength in caregiving. A palliative care approach emphasizing the positives and challenges of caregiving may provide carepartners with better support., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Pediatric hospice is a new terminology in current medical literature. Implementation of pediatric hospice care in oncology setting is a vast but subspecialized field of research and practice. However, it is accompanied by substantial uncertainties, shortages and unexplored sections. The lack of globally established definitions, principles, and guidelines in this field has adversely impacted the quality of end-of-life experiences for children with hospice needs worldwide. To address this gap, we conducted a comprehensive review of scientific literature, extracting and compiling the available but sparse data on pediatric oncology hospice from the PubMed database. Our systematic approach led to development of a well-organized structure introducing the foundational elements, highlighting complications, and uncovering hidden gaps in this critical area. This structured framework comprises nine major categories including general ideology, population specifications, role of parents and family, psychosocial issues, financial complications, service locations, involved specialties, regulations, and quality improvement. This platform can serve as a valuable resource in establishing a scientifically reliable foundation for future experiments and practices in pediatric oncology hospice., Competing Interests: Declaration of conflicting interestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

In the past decade, there has been a significant increase in the forced migrant and refugee population in Europe. As the journey to arrive at the country of destination is mostly irregular, research has shown that forced migrants survive a number of traumatic experiences trying to reach safety and ensure the well-being of themselves and their families. Since research shows that exposure to traumatic experiences refugee and migrant families endure on their journey is severe, a systematic literature review was conducted to understand the concept of trauma-informed approaches for migrant and refugee families. A total of seven research databases have been a part of this study, and the search resulted in 45 papers that were analyzed and their results presented. The following inclusion criteria were considered: (a) migrant/refugee families living with their children and (b) migrant/refugee families approaching care (health, social, educational, legal). Inclusion criteria refer to phenomenological studies, consider trauma/resilience of migrant/refugee families, include studies that are published in English language only; published literature only; 2013 onwards, and only full-text studies. The results of this analysis imply that papers are more focused on the experiences of trauma than on the approaches to treat it. However, this analysis did result in identifying approaches, interventions, and tools in working with trauma refugee and migrant families. Trauma-informed approaches for forced migrant families require a culturally adapted response provided across all sectors of family support to refugees and migrants., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

The fear of contracting the disease, introduction of practices such as quarantine, social isolation, and curfew to prevent its transmission, and effects of experiencing a loss due to this disease are experienced differently by different people. The empirical phenomenological approach will be used to describe, explain, and analyze the experiences of the family members of individuals who lost their lives due to COVID-19. This study was created in accordance with COREQ Statement Checklist. The themes obtained from the interviews are "death in isolation", "changing cultural-religious practices that cannot be performed", "not being able to say goodbye".This transformed grieving process caused by the pandemic may create unique psychosocial needs among family members. To meet these needs, planning and organizing complex grief therapy, speech therapies, expressive supportive counseling, and grief recovery programs is recommended., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

The morbidity and mortality rates of COVID-19 pandemic are increasing, and many families have lost their loved ones. This study explored the experiences of families living in Iran who lost a loved one to COVID-19. The researchers apply a descriptive phenomenological approach and draw on in-depth interviews with 18 family members who had lost at least one family member because of COVID-19. Data were analyzed using Colaizzi's method. After reviewing and comparing the consistency of the codes, crisis in crisis, circumstances of death and its consequences, and lack of preservation of patient dignity were extracted as main categories. Neglecting grieving families and related issues can lead to delays and difficulties in the process of recovery and intensification of their psychosocial pressures. Acquiring more knowledge about different impacts of COVID-19 will be helpful for providing timely and better rehabilitation., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

The study's aim is to explore the experiences of nursing home residents and their next of kin related to interacting with volunteers in daily life and when the resident's death is imminent. Qualitative data consisted of 130 hours of participant observations in three nursing homes and 13 interviews with five residents and eight next of kin. A thematic analysis identified three themes: (1) Social everyday activities - a frame for responsiveness and meaningful everydayness - reflecting the existential dimension of these activities; (2) Time - contrasting volunteers' time for care activities and bedside support to dying residents with professionals' time for similar activities; and (3) Valuable relief when death is imminent - inherent ethical dilemmas - reflecting potential tension between the valuable relief volunteers provide and the preferences of residents and their next of kin. Volunteers can promote and improve a holistic palliative care approach for residents in nursing homes., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

The COVID-19 pandemic has resulted in many people experiencing bereavement in challenging circumstances. In April 2020 at a large London Trust, a "Bereavement Welfare Hub" was established to offer support and advice by telephone to relatives and carers of all adults who died as inpatients. Data from BWH call records regarding 809 adults who died at the Trust in March, April and May 2020 were collated. A random selection of 149 call records were examined using thematic analysis. Six themes which influenced the bereavement experiences and grief status of call recipients were identified. These included family and community support, care up to the point of death, communication, care after death and death rituals and customs. Several factors positively and negatively influenced the experiences of people bereaved during the first wave of COVID-19. From these findings, recommendations have been made which have the potential to improve the bereavement experience, particularly during the pandemic era., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

This study aimed to assess the feasibility of a complex family nursing intervention (SAFIR©) designed to support families of patients with acquired brain injuries during the early phase of hospitalization, using a one-group pre- and post-test design with a one-month follow-up. Family members participated in four family meetings. Quantitative data were collected using an intervention protocol checklist and questionnaires. Qualitative data were gathered through semi-structured interviews, written open-ended questions, and note-taking. Feasibility outcomes revealed a family recruitment rate of 15.4% and a retention rate of 100%. Protocol adherence ranged from 94% in Phase 1 to 78% in Phase 3. Our results indicated that the intervention was meaningful and suitable for family members (n=7), healthcare provider (n=1), and nursing managers (n=6). From a sustainability perspective, our findings suggest the need to formally involve the entire inter-professional team in the intervention. Further evaluation of the intervention is warranted through a large-scale experimental., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Clinician-healers bear witness to suffering and accompany patients and families through the liminal spaces of an illness experience. Bearing witness to a patient's suffering is a form of attunement toward the ill or hospitalized person. Non-action, or wu wei , becomes illustrative of the empathy that develops as clinicians bear witness to the suffering of patients and families. This empathic response highlights the clinician's moral obligation to accompany their patients. Accompaniment is a form of "co-action" which orients the clinician to a mutual relationship with patients and families. Co-action incites new meaning-making within the liminal spaces and holds the potential to change the clinician's identity as practitioner and healer., Competing Interests: Declaration of Conflicting interestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: It should be noted that one author, BSC, is an unpaid member of the Editorial Board of the American Journal of Hospice and Palliative Medicine.

This review aimed to develop a framework to understand the process of information management in families with inherited conditions. Electronic databases were searched for relevant peer-reviewed articles. Articles were included if they were original research on families affected by any confirmed inherited condition, described how a family accesses, interprets, conveys, and/or uses information about the disease, included the recruitment of more than one family member, and used family as the unit of analysis. Data were analyzed through directed content analysis. Thirty-four articles from 27 studies were analyzed. We propose a framework for family information management consisting of the following domains: contextual influences, family information management behaviors, and family information management outcomes. This proposed framework expands the understanding of how families manage their genetic information in making health care decisions for their affected and at-risk relatives., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Introduction: The hospice-in-place program at Vanderbilt University Medical Center (VUMC) is available to patients and families who elect for hospice benefits and are too unstable to be transported for hospice care. The goal of this study was to assess the satisfaction of family members of patients who died while hospitalized at VUMC and received hospice-in-place compared to the families of patients who did not receive hospice care. Methods: Next-of-kin satisfaction was measured through the administration of qualitative interviews and quantitative questionnaires. Semi-structured interviews were audio-recorded, and transcripts were analyzed using an iterative inductive-deductive approach to develop a conceptual framework. Participants were also asked to respond to a 10-question satisfaction questionnaire. Results: Forty participants were enrolled: 20 next-of-kin of patients who received hospice-in-place and 20 next-of-kin of patients who passed without hospice. Factors influencing satisfaction were organized into a conceptual framework with three categories: individual-level factors, systems-level factors, and modifying factors. For the questionnaires, the hospice-in-place group had a mean satisfaction score of 4.54 (0.76) out of five, while the non-hospice group had a mean score of 4.14 (1.00). A comparison of the two groups' responses did not show a statistically significant difference ( P = 0.06). Discussion: Quantitative findings of this study showed improved satisfaction but were unable to show a significant difference in satisfaction with hospice-in-place compared to traditional care. Questionnaire results suggest that both types of care yield high satisfaction scores and are successfully supporting patients and families. The conceptual framework also adds to the understanding of end-of-life experiences at VUMC., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Substance use disorders (SUDs) present substantial challenges for family members living with or supporting relatives with SUDs. This review explores existing literature on family members' experiences with relatives with SUDs and their support needs. Method: An integrative review was conducted by searching literature in the Cumulative Index of Nursing and Allied Health, PubMed, PsycINFO, ProQuest, and Scopus databases. Results: Five themes were generated based on analysis of 26 empirical studies: (a) family members' and caregivers' experiences of SUDs; (b) impact of SUDs-related aggressive/violent behaviors on families; (c) dilemmas faced by family members; (d) culture and family stigma related to SUDs; and (e) factors contributing to SUDs, challenges, and support needs. The review highlighted barriers to seeking support due to stigma and guilt, underscoring the need for structured support programs. Conclusions: This review sheds light on the challenges faced by family members with relatives suffering from SUDs and emphasizes the crucial need for structured support programs. The findings provide insights for developing initiatives to address the social and trauma-induced needs of family members and to establish support resources for them., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Intensive care unit (ICU) admissions are often accompanied by many physical and existential pressure points that can be extraordinarily wearing on patients and their families and surrogate decision makers (SDMs). Multidisciplinary palliative support, including physicians, advanced practice nurses, nutritionists, chaplains and other team members, may alleviate many of these sources of potential suffering. However, the palliative needs of ICU patients undoubtedly exceed the bandwidth of current consultative specialty palliative medicine teams. Informed by standard-of-care palliative medicine domains, we review common ICU symptoms (pain, dyspnea and thirst) and their prevalence, sources and their treatment. We then identify palliative needs and impacts in the domains of communication, SDM support and transitions of care for patients and their families through their journey in the ICU, from discharge and recovery at home to chronic critical illness, post-ICU disability or death. Finally, we examine the evidence for strategies to incorporate specialty palliative medicine and palliative principles into ICU care for the improvement of patient- and family-centered care. While randomized controlled studies have failed to demonstrate measurable improvement in pre-determined outcomes for patient- and family-relevant outcomes, embracing the principles of palliative medicine and assuring their delivery in the ICU is likely to translate to overall improvement in humanistic, person-centered care that supports patients and their SDMs during and following critical illness., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: The interaction of health personnel with relatives is linked to the quality of care results in nursing homes. However, there is limited knowledge of how relatives perceive being an integral part of the nursing home context. This secondary analysis has its starting point in an ethical concern about relatives' experiences in a previous study., Aim: To critically discuss relatives' experiences of suffering when their next of kin live in a nursing home in a rural arctic context., Research Design, Participants and Context: The critical hermeneutic stance is informed by Habermas. The secondary analysis is conducted on original data from five semi-structured focus groups with 18 relatives of residents of two nursing homes in a rural part of Norway. The theoretical framework concerning dignity, well-being, and suffering, as developed by Galvin and Todres, contrasts the analysis., Ethical Considerations: The study followed the principles of the Helsinki Declaration. It was approved by the Norwegian Center for Research Data (NSD) (reg. no. 993360)., Findings: The main theme of this study is: suffering while resigning to an unacceptable violation of dignity. This theme is deepened by two subthemes: (a) suffering while adapting to a relationship of dependence and (b) suffering while accepting the unacceptable., Conclusions: Relatives experience suffering as a cross-pressure in their struggle to interact responsibly with health personnel in nursing homes. This may have a negative outcome, where relatives end up adapting to being silent witnesses to missed care and a violation of dignity., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: A substantial proportion of persons with psychosis (PWP) remain untreated in the community across the world. Factors that preclude them from accessing psychiatric treatment are poorly studied. In this study, we explored the factors that prevented persons with schizophrenia and their caregivers from accessing psychiatric treatment using an interview schedule specifically developed for this purpose., Methods: We identified individuals with schizophrenia and related disorders who had never accessed psychiatric treatment. We interviewed 67 such individuals and their family members using a validated tool, the Schedule of Factors Influencing Access to Treatment (SOFIAc) and analysed the data using descriptive statistics., Results: The M ( SD ) number of factors reported to preclude individuals with psychosis and families from seeking psychiatric treatment was 10 (3.32). No PWP/family reported any single factor as the sole reason for not accessing treatment. Distance to the nearest psychiatric centre (97%), PWP's/family members' knowledge and attitude towards symptoms of psychosis and treatment (92.5%), financial problems (91%), lack of insight and active resistance to efforts towards treatment (86.6%), lack of support from the family (83.6%) and family issues and dynamics (79.1%) were reported to be the commonest factors that precluded them from accessing psychiatric treatment., Conclusions: The reason for individuals with psychosis and their family members not accessing psychiatric treatment was invariably multifactorial, involving, on average, 10 factors. Programmes that target the reduction of the treatment gap should be cognizant of the multifactorial nature of the challenge of reaching psychiatric treatment for persons with psychoses.

Family involvement is widely considered an important part of patient care in the intensive care unit. From professional health care organizations, government, and hospital associations, there has been a cultural shift toward family presence as part of a wider commitment to patient-centered care. At the same time, the meaning and impact of family involvement in the intensive care unit setting remain opaque and under-studied. This study employed an ethnographic approach to better understand family involvement in practice and from the perspective of health care professionals and family members by studying an implementation trial of a family involvement tool in two intensive care units over 2 years. The findings revealed that an expanded and self-defined role for family members as carers in the intensive care unit challenged the current configuration of the nurse patient/family relationship and that family members were aware of these dynamics. While the intensive care unit implementation teams were both motivated to implement a novel way of facilitating family involvement, the processual, organizational, and contextual factors in the intensive care units largely determined the possibilities of its application. This suggests that interventions should address the specific context in which they are employed., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Post-Conviction Traumatic Stress (PCTS) describes the cognitive, psychological, and physiological symptoms of trauma that result from a range of experiences with the criminal justice system. This pilot study aimed to empirically validate the construct of PCTS utilizing the Post-Traumatic Checklist (PCL-5), an existing measure of Post-Traumatic Stress Disorder (PTSD) according to DSM-5 diagnostic criteria. Using mixed methods, the survey asked about the traumagenic impact of arrests, court proceedings, incarceration, probation/parole supervision, and sex offender registration requirements in a sample of people required to register as sexual offenders (RSOs; n = 290) and their family members ( n = 126). The PCL-5 was used to estimate the prevalence of PTSD and to explore the unique presentation of symptoms. Findings indicated that 69% of registrants and 62% of family members reported clinically significant indicators of PTSD. Examples of specific symptom presentations are illustrated through qualitative responses. Implications for clinical treatment, policy, and future research related to PCTS are discussed., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

This study examined the relationship between having an opportunity to say goodbye to a dying family member or friend in person or virtually, as well as attending their funeral services in person or virtually, and the bereaved individuals' psychological distress and complicated grief during the COVID-19 pandemic. Five hundred and nineteen US adults who had lost a family member or a friend between January 2020 and June 2021 completed an online survey for this study. Only a small proportion of participants were able to say goodbye to their dying family member or friend in person, and saying goodbye virtually was associated with higher levels of complicated grief and psychological distress. Those who physically attended a formal, in-person funeral or memorial service reported lower levels of psychological distress. The findings suggest a complicated process of saying goodbye in different formats during the pandemic., Competing Interests: Declaration of Conflicting InterestsThe author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objectives: To examine the cross-national associations between familism and self-efficacy dimensions, and levels of burden and depression. Methods: Sociodemographic, familism, self-efficacy, depressive symptoms, and burden variables were measured in 349 dementia family caregivers from the US and Spain. Results: US sample: greater support from family was positively related to self-efficacy for obtaining respite and self-efficacy for controlling upsetting thoughts and behaviors. Both self-efficacy constructs were negatively related to depression. Similar findings were obtained for burden. Spanish sample: higher scores on family as referents were associated with lower scores on self-efficacy for obtaining respite; lower scores on self-efficacy for obtaining respite were associated with higher depressive symptomatology. Discussion: Study findings suggest that a significant interplay exists between the various facets of familism and self-efficacy, leading to differential caregiving outcomes. Unique cultural contexts and values derived from each country may exert distinct influences on how the caregiving role is perceived and appraised., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: The end of treatment (EOT) is a significant time point along the childhood cancer treatment-survivorship continuum, and is recognized as a time when childhood cancer survivors (CCS) and their families experience significant vulnerability and stress. There is a call by families and healthcare professionals alike for standardized, comprehensive EOT services to successfully navigate through this transition period and better cope with posttreatment medical, physical, and social-emotional issues. Method: A multidisciplinary team of pediatric oncology health care professionals developed and implemented a two-session psychoeducational program to address these EOT needs. To evaluate the Shooting for the STARS (Survivors Tackling All Roadblocks Successfully) EOT Transition Program , a pretest-posttest repeated measures design was utilized. A convenience sample of 47 parents/caregivers and 29 CCS completed surveys before, during, and after the EOT services were received. Analysis of relationships and changes over time was conducted using Spearman-ranked correlations and Friedman tests, a nonparametric repeated measures analysis of variance. Results: All respondents reported program satisfaction, with 94.7% feeling somewhat or very prepared for ending treatment. Participants' distress levels tended to decrease over time. Parent/caregiver-reported levels of CCS' anxiety, fatigue, pain interference, and physical mobility significantly improved over the time period during which families participated in the Shooting for the STARS Program . Discussion: This nurse-led, evidence-based program was determined to be feasible and acceptable. It may contribute to improved health-related quality of life and decrease distress over time., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

The use of Information and Communication Technologies is clearly widespread among adolescents from a young age. Although it poses a significant contribution at the academic, social, and emotional levels, it can also involve a set of important risks, including cyberbullying and, therefore, cybervictimization. Previous studies have pointed out the importance of family context since parental control and family communication emerge as contributors to this phenomenon. Therefore, the aim of the present study was to analyze the influence of family communication on cybervictims and the moderating role of different sociodemographic variables (age, gender, nationality, and culture), as well as social, emotional, and personality variables. In this context, a meta-analysis was performed with a random effects model, using a total meta-sample of 29,093 adolescents (mean age: 14.50 years) distributed in k  = 20 samples belonging to nine studies on cybervictimization published in English in Q1 journals between 2015 and 2020. The results showed that family offensive communication is related to cybervictimization. This could be because the affected individuals often use social media to compensate for the deficiencies they perceive within their families, as well as to obtain support, which increases their time spent on the Internet and their exposure to this phenomenon. These findings highlight the need for family and community interventions, not only school-based or individual interventions., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Caregiving is recognised as a source of stress with potential for negative health impacts as well as positive outcomes and development of resilience. For young carers, children, and adolescents providing care for close family members, adaptation through resilience is crucial, yet work using a resilience approach is limited. This study explored protective factors and pathways to resilience in a sample of young carers, through application of the socioecological model in caring relationships. An in-depth qualitative approach was used, with in-person interviews facilitated by auto-driven photo elicitation. Deductive thematic analysis was applied, framed by three levels (individual, community, and society) of the socioecological model of resilience. Twelve participants (nine girls and three boys) aged 5-18 years, each providing care to a family member, were recruited using opportunity and volunteer sampling via carers' centres in the southwest of England. Ten key themes were identified, four at the individual level: pre-empting challenges and planning, cognitive strategies, emotional strategies, and seeking solitude; three at the community level: family support, friendships, and pets and inanimate objects; and three at the society level: professional support, access to caregiver activities and community, and being outdoors. The location of themes at each level indicated relevance of the socioecological model to identification of protective factors in a young carer population. These findings have important applications for guidance to charities and organisations supporting young carers. Identification of factors that promote resilience offers support for the development of well-informed interventions, which harness these protective factors to develop resilience and improve health for young carers., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Significant barriers remain regarding the implementation of family-centred approaches in the domain of forensic psychiatry despite their effectiveness at increasing adherence to treatment, improving attendance to medical appointments, decreasing readmission rates and reducing episodes of relapse. We attribute these barriers to a fundamental gap in our understanding of the family function and its role within the forensic psychiatric system. Despite requesting to be included and considered as partners, some families feel excluded and sidelined, which causes distress, incomprehension and disengagement. We approached this tension at the discursive level through a critical ethnography of the Review Board and the work of Foucault on psychiatric power, which provided us with a unique opportunity to understand how the role of families are constructed and sustained in the Canadian forensic psychiatric system. To do so, we mobilized data stemming from ethnographic observations and documentary artifacts entitled 'reasons for disposition'. Data analysis allowed us to identify two discursive constructions of familial functions: (1) families as repositories of information and (2) families as supervisory agents. These results have implications for health care professionals and administrators in forensic psychiatry who are increasingly adhering to family-centred care models without questioning what such care or what such family engagement entails., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Young people often rely on family carers to access support for their mental health. However, stigma can be a barrier to help seeking for young people and families. Little research has been undertaken with young people who experience highly stigmatised symptoms, such as psychosis spectrum symptoms, and even less research has been conducted with parents and carers, meaning barriers to help go unchallenged. Therefore, this narrative review aimed to explore stories of family experiences of seeking help for young people with symptoms associated with the psychosis spectrum. Sources searched were PsycINFO and PubMed. Reference lists of the selected papers were also cross-checked to ensure the search had not missed potential papers for inclusion. Searches returned 139 results, of which 12 were identified for inclusion. A narrative analytic approach was adopted to synthesise qualitative findings to provide a nuanced interpretation of help-seeking experiences. The narrative synthesis provided an opportunity to identify differences, similarities, and patterns across the studies to tell a cumulative emancipatory narrative of family experiences of seeking help for psychosis spectrum symptoms. Help-seeking experiences had a relational impact on families, with stress adding to conflict and anxieties inhibiting hopefulness, although families could emerge stronger and assertively with compassionate support., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Cancer diagnosis and treatment can be physically arduous, disrupting patients' social and work lives. Understanding the extent of these problems is key to addressing patients' needs, but specific psychosocial challenges have not yet been well studied in resource-limited settings. A qualitative study was conducted in the capital and two regions of Ethiopia with the aim of exploring psychosocial challenges among cancer patients. A total of 14 in-depth interviews (IDIs) and 16 focus group discussions (FGDs) were done with cancer patients, health professionals, community representatives, and religious leaders. Four separate interview guides were used to facilitate the interviews and discussions. All transcribed documents, field notes, and reflexive memos were entered into NVivo 12 software, and deductive thematic analysis using the social-ecological model was applied to summarize the main findings. At an individual level, emotional distress, suicidal risk, denial, and refusal of treatment were identified immediately after diagnosis while hopelessness, feeling depressed, and fear of death were commonly reported psychosocial challenges during the course of treatment. Involvement of family members in major treatment decisions was recognized at an interpersonal level. Our result also revealed that cancer patients had strong social support from family members and close friends. In the community, traditional medicine and religious rituals were considered an alternative treatment for cancer. The findings indicate that counselling and psychoeducation are crucial for cancer patients, family members, and close friends. Awareness creation programmes should be delivered through collaboration with religious leaders and traditional healers., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Introduction: Little is known about replacement costs of care provided by informal carers during the last year of life for people dying of cancer and non-cancer diseases., Aim: To estimate informal caregiving costs and explore the relationship with carer and decedent characteristics., Design: National observational study of bereaved carers. Questions included informal end-of-life caregiving into the 2017 Health Survey for England including estimated recalled frequency, duration and intensity of care provision. We estimated replacement costs for a decedent's last year of life valuing time at the price of a substitutable activity. Spearman rank correlations and multivariable linear regression were used to explore relationships with last year of life costs., Setting/participants: Adult national survey respondents - England., Results: A total of 7997 adults were interviewed from 5767/9612 (60%) of invited households. Estimated replacement costs of personal care and other help were £27,072 and £13,697 per carer and a national cost of £13.2 billion and £15.5 billion respectively. Longer care duration and intensity, older age, death at home (lived together), non-cancer cause of death and greater deprivation were associated with increased costs. Female sex, and not accessing 'other care services' were related to higher costs for other help only., Conclusion: We provide a first adult general population estimate for replacement informal care costs in the last year of life of £41,000 per carer per decedent and highlight characteristics associated with greater costs. This presents a major challenge for future universal care coverage as the pool of people providing informal care diminish with an ageing population., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Current literature indicates low uptake of advance care planning (ACP) among the Chinese-speaking community in Australia. To increase the uptake of ACP among the Chinese-speaking community, a better understanding of their attitudes and perceptions on end-of-life (EOL) matters, and ACP is required., Objective: This study aimed to identify significant events and social and cultural factors that influence participants' values and characterize the attitudes and perceptions towards ACP among older Chinese-speaking Australians., Methods: A qualitative study explored participants' experiences through semi-structured one-to-one interviews. The interviews were conducted in Mandarin, Cantonese or English, then translated and transcribed into English. The transcripts were coded and analysed thematically., Results: Twenty participants were recruited (14 female, six male). Participants typically reported a preference to make health-related decisions autonomously. Their perspectives were grounded in past experiences of illnesses and EOL decision-making of loved ones, personal values, and perceived needs. Family dynamics and intimacy of relationships appeared to influence the role and responsibility of family members in EOL decision-making and ACP. Most participants perceived the need to engage in ACP only when encountering significant health changes or higher care needs., Conclusion: Healthcare professionals should initiate ACP discussion using culturally appropriate communication with consideration of personal values, past experiences and family dynamics. Efforts should be invested in raising public awareness of ACP within the Chinese-Australian community., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.