How to approach patients and families at the end of life.

Healthcare practitioners are regularly faced with treating patients at the end of their life, and this can be very daunting. This article hopes to help the practitioner have an approach to managing end-of-life care that makes it less distressing. The symptoms at the end-of-life include delirium and/or agitation, breathing changes, skin changes, sleeping more, decrease in need for food and drink, incontinence, and increased secretions. These symptoms are discussed and practical ways of management are given. The article further discusses how to approach the difficult conversation with the family and gives guidance as to what needs to be discussed. A number of tips are discussed on how to prepare the family to handle a death at home. It is essential to look at coping mechanisms and selfcare for practitioners dealing with end-of-life care as the death of a patient not only affects the family but also the practitioner.

Chinese college students' mental health during the first three months of the COVID-19 pandemic: the protective role of family functioning.

Background: Various psychological theories suggest that a supportive family environment protects the mental health of young adults during stressful life events. However, evidence is limited regarding the protective role of family support during a major public health crisis. Objective: To examine the role of family functioning on mental health among Chinese college students during first stage of the COVID-19 pandemic. Methods: Between January-March 2020, 1,555 college students (44% female, on average 19 years old) from five Chinese universities participated. Participants rated their family functioning on the Family APGAR Index and their mental health on the Psychological Questionnaires for Emergent Events of Public Health, measuring depression, neurasthenia, fear, obsessive-anxiety and hypochondriasis. Results: Better family functioning was associated with having fewer psychological symptoms. In addition, we identified three mental health profiles related to the severity across the psychological symptoms: Low-level, medium-level and high-level symptom clusters. Latent profile analysis showed that as family function improved, students were, respectively, 16 to 24% more likely to be in the low-level symptom group, compared to being in the medium symptom group or the high-level symptom group. Conclusion: These results support the notion that family support may act as a psychological buffer for young adults during a large-scale public health crisis like the COVID-19 pandemic.

Assessing the mediating role of family resilience between caregiver burden and caregiver capacity: a cross-sectional study among Chinese stroke survivors and family caregivers in a real-world setting.

OBJECTIVES: To investigate the relationships among caregiver burden, family resilience, and caregiver capacity in the care of stroke survivors. We hypothesised that family resilience would mediate the relationship between caregiver burden and caregiver capacity. DESIGN: A cross-sectional study design was used. SETTING: The study was conducted in a tertiary care setting in Ningbo City, Zhejiang Province, China. PARTICIPANTS: The study involved 413 stroke survivors and their primary caregivers. OUTCOME MEASURES: The primary caregivers completed the Shortened Chinese Version of the Family Resilience Assessment Scale, Zarit Caregiver Burden Interview and Family Caregiver Task Inventor and provided their sociodemographic information. Stroke survivors were assessed for activities of daily living, and their sociodemographic information was provided. Data were analysed, controlling for sociodemographic variables and focusing on the mediating effect of family resilience. RESULTS: Caregiver burden was influenced by the activities of daily living of stroke survivors, caregiver age and caregiver health status (p<0.05). Higher caregiver burden was associated with lower family resilience (p<0.01). Lower caregiver capacity corresponded to heavier caregiver burden (p<0.01). Family resilience mediated the relationship between caregiver burden and caregiver capacity (b=0.1568; 95% CI: 0.1063 to 0.2385). CONCLUSIONS: Enhancing family resilience can reduce caregiver burden and improve caregiver capacity in stroke care. These findings underscore the importance of developing interventions focused on nursing skills and family resilience.

A chain mediation model reveals the association between family sense of coherence and quality of life in caregivers of advanced cancer patients.

Caregivers of advanced cancer patients face challenges impacting their quality of life (QoL). While evidence suggests that family sense of coherence (FSOC) can enhance individual psychological well-being and reduce distress symptoms, the precise mechanism through which FSOC improves caregivers' QoL remains unclear. This study aimed to explore the relationships among FSOC, psychological resilience, psychological distress, and QoL in primary caregivers of advanced cancer patients. A cross-sectional observational study was undertaken from June 2020 to March 2021 across five tertiary hospitals in China. Instruments included a general characteristic questionnaire, the Family Sense of Coherence Scale, the Patient Health Questionnaire-4, the 10-item Connor-Davidson Resilience Scale, and the 8-item SF-8 health survey. Pearson's correlation and chain mediation analyses were performed using IBM SPSS (version 21) and PROCESS macro (version 3.4). Out of 290 valid questionnaires, results demonstrated that FSOC directly and positively influences caregivers' QoL. Psychological distress partially mediated the FSOC-QoL association, with paths "FSOC-psychological distress-QoL" and "FSOC-psychological resilience-psychological distress-QoL" contributing 43.08% and 6.72% of the total effect, respectively. Furthermore, this study distinguished physical and mental aspects of QoL, confirming both conform to the chain mediation model. FSOC impacts caregivers' QoL directly and indirectly through the mediation of psychological distress and the chain mediation effect of "psychological resilience-psychological distress". These insights enhance our understanding of the complex interplay between FSOC and QoL, underscoring the potential benefits of bolstering FSOC to strengthen caregiver resilience, alleviate distress, and ultimately elevate their QoL.

Clinical effectiveness of drop-in mental health services at paediatric hospitals: A non-randomised multi-site study for children and young people and their families - study protocol.

BACKGROUND: Despite the high prevalence of mental health difficulties in children and young people with long-term health conditions (LTCs), these difficulties and experiences are often overlooked and untreated. Previous research demonstrated the effectiveness of psychological support provided via a drop-in mental health centre located in a paediatric hospital. The aim of this prospective non-randomised single-arm multi-centre interventional study is to determine the clinical effectiveness of drop-in mental health services when implemented at paediatric hospitals in England. METHODS: It is hypothesised that families who receive psychological interventions through the drop-in services will show improved emotional and behavioural symptoms. Outcomes will be measured at baseline and at 6-month follow-up. The primary outcome is the difference in the total difficulties score on the Strengths and Difficulties Questionnaire (SDQ) reported by parent or child at 6 months. Secondary outcomes include self and parent reported Paediatric Quality of Life Inventory (PedsQL), self-reported depression (PHQ-9) and anxiety measures (GAD-7) and family satisfaction (CSQ-8). DISCUSSION: This trial aims to determine the clinical effectiveness of providing psychological support in the context of LTCs through drop-in mental health services at paediatric hospitals in England. These findings will contribute to policies and practice addressing mental health needs in children and young people with other long-term health conditions. TRIAL REGISTRATION: ISRCTN15063954, Registered on 9 December 2022.

The influence of progeny-Parents family travel on the well-being of the elderly in filial piety culture.

Grounded in the cultural context of Chinese filial piety, this study employs structural equation model to analyze survey data from elderly participants. It explores the effect and path of progeny-parents family travel on the elderly's sense of well-being and examines the mediating roles of generational interaction, optimistic emotion, and psychological resilience. The findings indicate that progeny-parents family travel positively influences the well-being of the elderly, with generational interaction, optimistic emotion, and psychological resilience serving as intermediary roles. Theoretically, this study enriches the localized perspective of family travel's psychological and behavioral impact on the elderly. It elucidates the spillover effects of family travel within the framework of filial piety culture, delineates the mechanisms by which family travel enhances elderly well-being, and offers theoretical insights for businesses to develop customized family travel products and services.

Heads Together Online Peer Education (HOPE): co-design of a family-led, video-based resource for families affected by paediatric acquired brain injury.

Background Many families of children with acquired brain injuries (ABI) desire opportunities to connect with peers who have shared similar experiences, but such opportunities are often unavailable. Heads Together Online Peer Education (HOPE) is a co-designed online video-based resource that provides information and early support to families following paediatric ABI. This study is part of a larger co-creation project using a community-based participatory research approach to develop and implement HOPE for families impacted by paediatric ABI in Australia. This study aimed to explore parents' and clinicians' perspectives regarding HOPE's usability, acceptability, and future implementation. Methods Parents and clinicians were recruited from a state-wide, interdisciplinary rehabilitation service. Parents were eligible to participate if their child had sustained an ABI within 2 years of recruitment. Participants accessed HOPE, completed the System Usability Scale (SUS), and participated in a semi-structured interview. Transcripts were analysed using inductive content analysis. Results Ten parents and 13 rehabilitation clinicians participated. Average SUS scores were 80.5/100 and 81.73/100, respectively. Participants were satisfied with HOPE's family-centred content and delivery. They expressed having benefited from using HOPE and offered suggestions for its optimisation. Finally, participants reflected on how HOPE could be introduced to and used by families, and its potential usefulness in educating others about paediatric ABI. Conclusions HOPE was developed through a family-led co-design process and aims to provide information and support to families in the early stages following paediatric ABI. This study's findings demonstrate HOPE's usability and acceptability from end-users' perspectives and will guide implementation.

It provides families with other avenues for treatment when there are no other options Surgeons' perspectives of being part of a precision medicine trial for poor prognosis paediatric cancer patients: A short report.

OBJECTIVE: Precision medicine is transforming cancer treatment, yet the perspectives of surgeons who often play a critical role in the delivery of precision medicine remain understudied. METHODS: We conducted semi-structured interviews with 13 surgeons involved in a precision medicine trial for children with poor prognosis cancer. We explored knowledge of genetics, confidence with somatic and germline results, ratings of benefit to stakeholders and willingness to undertake surgical procedures. RESULTS: Surgeons generally had positive attitudes towards precision medicine but expressed concerns about families' unrealistic expectations, mixed opinions on the benefits and the use of research-only biopsies. Most surgeons rated their genetics knowledge as 'good' (69%) and felt 'very confident' in identifying genetic specialists (66%), but 'not confident' (66.6%) in making treatment recommendations. Surgeons' willingness to undertake a procedure was influenced by potential patient benefit. CONCLUSIONS: Our findings support the need for more workforce and training support for surgeons to fully engage with precision medicine.

Improving foot self-care in people with diabetes in Ghana: A development and feasibility randomised trial of a context appropriate, family-orientated diabetic footcare intervention.

OBJECTIVE: Africa presents a higher diabetic foot ulcer prevalence estimate of 7.2% against global figures of 6.3%. Engaging family members in self-care education interventions has been shown to be effective at preventing diabetes-related foot ulcers. This study culturally adapted and tested the feasibility and acceptability of an evidence-based footcare family intervention in Ghana. METHODS: The initial phase of the study involved stakeholder engagement, comprising Patient Public Involvement activities and interviews with key informant nurses and people with diabetes (N = 15). In the second phase, adults at risk of diabetes-related foot ulcers and nominated caregivers (N = 50 dyads) participated in an individually randomised feasibility trial of the adapted intervention (N = 25) compared to usual care (N = 25). The study aimed to assess feasibility outcomes and to identify efficacy signals on clinical outcomes at 12 weeks post randomisation. Patient reported outcomes were foot care behaviour, foot self-care efficacy, diabetes knowledge and caregiver diabetes distress. RESULTS: Adjustments were made to the evidence-based intervention to reflect the literacy, information needs and preferences of stakeholders and to develop a context appropriate diabetic foot self-care intervention. A feasibility trial was then conducted which met all recruitment, retention, data quality and randomisation progression criteria. At 12 weeks post randomisation, efficacy signals favoured the intervention group on improved footcare behaviour, foot self-care efficacy, diabetes knowledge and reduced diabetes distress. Future implementation issues to consider include the staff resources needed to deliver the intervention, family members availability to attend in-person sessions and consideration of remote intervention delivery. CONCLUSION: A contextual family-oriented foot self-care education intervention is feasible, acceptable, and may improve knowledge and self-care with the potential to decrease diabetes-related complications. The education intervention is a strategic approach to improving diabetes care and prevention of foot disease, especially in settings with limited diabetes care resources. Future research will investigate the possibility of remote delivery to better meet patient and staff needs. TRIAL REGISTRATION: Pan African Clinical Trials Registry (PACTR) - PACTR202201708421484: https://pactr.samrc.ac.za/TrialDisplay.aspx?TrialID=19363 or pactr.samrc.ac.za/Search.aspx.

Community support for families affected by dementia.

This paper provides and overview of the community support services that may be available for people with dementia and their family carers. The authors introduce dementia, including the impact of the diagnosis on both the person with dementia and the wider family. Using a case study approach, the authors describe the support available, spanning health and social care and third sector organisations. They discuss how this support can enable people with dementia and their carers to maintain wellbeing and cope with the impact of dementia. This article will be of interest to community nurses, and health and social care professionals more generally, who may encounter families affected by dementia in community settings. Having a good knowledge of the support available and how to access it will allow community nurses to capitalise on the health promotion opportunities presented to them, when they come into contact with families affected by dementia in the course of their day-to-day practice.

End of life decision making when home mechanical ventilation is used to sustain breathing in Motor Neurone Disease: patient and family perspectives.

BACKGROUND: Motor Neurone Disease (MND) leads to muscle weakening, affecting movement, speech, and breathing. Home mechanical ventilation, particularly non-invasive ventilation (NIV), is used to alleviate symptoms and support breathing in people living with MND. While home mechanical ventilation can alleviate symptoms and improve survival, it does not slow the progression of MND. This study addresses gaps in understanding end-of-life decision-making in those dependent on home mechanical ventilation, considering the perspectives of patients, family members, and bereaved families. METHODS: A UK-wide qualitative study using flexible interviews to explore the experiences of people living with MND (n = 16), their family members (n = 10), and bereaved family members (n = 36) about the use of home mechanical ventilation at the end of life. RESULTS: Some participants expressed a reluctance to discuss end-of-life decisions, often framed as a desire to "live for the day" due to the considerable uncertainty faced by those with MND. Participants who avoided end-of-life discussions often engaged in 'selective decision-making' related to personal planning, involving practical and emotional preparations. Many faced challenges in hypothesising about future decisions given the unpredictability of the disease, opting to make 'timely decisions' as and when needed. For those who became dependent on ventilation and did not want to discuss end of life, decisions were often 'defaulted' to others, especially once capacity was lost. 'Proactive decisions', including advance care planning and withdrawal of treatment, were found to empower some patients, providing a sense of control over the timing of their death. A significant proportion lacked a clear understanding of the dying process and available options. CONCLUSIONS: The study highlights the complexity and evolution of decision-making, often influenced by the dynamic and uncertain nature of MND. The study emphasises the need for a nuanced understanding of decision-making in the context of MND.

Experiences of families with children diagnosed with Autism Spectrum Disorder in World Health Organization Afro-Regions: A scoping review.

A scoping review on Autism Spectrum Disorder (ASD) and its impact on the families of affected children was undertaken due to insufficient information available on the diverse experiences impacting their lives. Using the Joanna Briggs Institute methodology, eligibility criteria were guided by Population (families), Concept (family experiences), and Context (African region). English-language articles were sought from a variety of databases and search engines. The publication date of the identified articles ranged from 2003 to 2021 with most published in 2020 (n = 10), and the majority using qualitative methodologies (n = 51). Most family members involved were parents (n = 51) and their ages ranged from 18 to 75 years. The families experienced various challenges related to their child with regard to education, healthcare, and the broader community including lack of support. Family coping strategies included believing in God, attending counseling sessions, adapting, and accepting the situation. Healthcare professionals should be prepared and positioned to educate families and siblings on various aspects of ASD. There is a need for active, continued research on families within most countries of World Health Organization Afro-region.

Supported Privacy: An Essential Principle for End-of-Life Care for Children and Families in the PICU.

Caring for children and their families at the end-of-life is an essential but challenging aspect of care in the PICU. During and following a child's death, families often report a simultaneous need for protected privacy and ongoing supportive presence from staff. Balancing these seemingly paradoxical needs can be difficult for PICU staff and can often lead to the family feeling intruded upon or abandoned during their end-of-life experience. In this "Pediatric Critical Care Medicine Perspectives" piece, we reframe provision of privacy at the end-of-life in the PICU and describe an essential principle that aims to help the interprofessional PICU team simultaneously meet these two opposing family needs: "Supported Privacy." In addition, we offer concrete recommendations to actualize "Supported Privacy" in the PICU, focusing on environmental considerations, practical needs, and emotional responses. By incorporating the principles of "Supported Privacy" into end-of-life care practices, clinicians can support the delivery of high-quality care that meets the needs of children and families navigating the challenges and supports of end-of-life in the PICU.

Brief admission by self-referral for individuals with self-harm and suicidal ideation: a qualitative study based on focus groups exploring relatives' experiences.

PURPOSE: Brief Admission by self-referral (BA) is a standardized crisis-management intervention for individuals with self-harm and risk for suicide. This study explored relatives' experiences of BA. Relatives' perspectives may contribute to an increased understanding of the effects of BA given the relatives' role as support and informal caregivers as well as being co-sufferers. METHODS: Fourteen relatives to adults with access to BA within one Swedish region participated in focus groups analysed with reflexive thematic analysis. RESULTS: We generated themes evolving around three meaning-based concepts: access (A low threshold to a safe back-up is crucial and obstacles may easily break faith), independence (Trust in their ability with care and respect), and recovery (The rest and relational recovery we all get are needed and invaluable). CONCLUSIONS: BA brings considerable value to users and relatives, by supporting them to take care of themselves and each other. Communication and involvement of relatives may enhance users' ability to overcome obstacles to accessing BA. Implementation and adherence may be strengthened by supervision of BA staff and education of emergency care staff. Resources are needed to improve access. Mapping hurdles to BA, support through peers and targeted psychoeducation may improve recovery for BA users and their relatives.

Reliability and validity of the training satisfaction questionnaire for family members (TSQ-FM) entering the ICU during an isolation disease outbreak.

BACKGROUND: The presence of family members in an isolated ICU during an isolation disease outbreak is restricted by hospital policies because of the infectious risk. This can be overcome by conferring to family members the skill and the ability to safely don and doff the personal protective equipment (PPE) through a nurse-led training intervention and assess their satisfaction, to respond to the need to define a safe, effective and quality care pathway focused on Family-Centered Care (FCC) principles. OBJECTIVE: the study aimed to build a valid and reliable instrument for clinical practice to assess family members' satisfaction to allow ICU nurses to restore family integrity in any case of infectious disease outbreak that requires isolation. METHODS: A cross-sectional study was conducted to test the psychometric properties. The questionnaire was constructed based on a literature review on the needs of family members in the ICU. 76 family members were admitted to a COVID-ICU. Cronbach's coefficient, Geomin rotated loading, and EFA were applied to assess the reliability and validity of the instrument. RESULTS: The Kaiser-Mayer-Olkin (KMO) measure was 0.662, the Bartlett sphericity test showed a significant p-value (χ²=448.33; df=45; p < 0.01), Cronbach's alpha coefficient was.896. A further CFA analysis confirmed that all fit indices were acceptable. The results showed satisfactory validity and reliability, which could be generalized and extended to any outbreak of isolation disease. CONCLUSIONS: This study provides a valid and reliable instrument for clinical practice to maintain family integrity in the dyadic relationship between the patient and the family member, even during an emergency infectious disease outbreak that requires isolation.

The experiences among bereaved family members after a left ventricular assist device (LVAD) deactivation.

BACKGROUND: The use of left ventricular assist devices (LVADs) is increasing with an estimated 2500 devices implanted each year. When burdens of the LVAD outweigh benefits, most individuals with LVADs will undergo deactivation in the hospital setting. While the decision to deactivate an LVAD is considered an ethical practice, little is known about the experience and needs of bereaved family members. OBJECTIVE: To investigate the experiences of bereaved family members of patients who died following LVAD deactivation. METHODS: In this qualitative study, 11 family members of patients who underwent LVAD deactivation were interviewed. The semi-structured interviews were conducted until data saturation was reached and relevant themes emerged. RESULTS: This qualitative study was conducted to understand the experience of family members before, during and after the patient underwent LVAD deactivation, including their perceptions of engagement with the healthcare team. Analysis revealed six overarching themes from the experience, including 1) hope for survival, 2) communication, 3) spirituality and faith, 4) absence of physical suffering, 5) positive relationships with staff, 6) post-death care needs. CONCLUSION: Bereaved family members of patients undergoing LVAD deactivation have unique lived experiences and concerns. This study highlights the importance of effective communication not only near end-of-life but throughout the LVAD experience. While the positive relationships with staff and the absence of physical suffering were strengths identified by bereaved caregivers, there is an opportunity for improvement, particularly during the decision-making and post-death periods.

An mHealth Intervention Promoting Physical Activity and Healthy Eating in a Family Setting (SMARTFAMILY): Randomized Controlled Trial.

BACKGROUND: Numerous smartphone apps are targeting physical activity (PA) and healthy eating (HE), but empirical evidence on their effectiveness for the initialization and maintenance of behavior change, especially in children and adolescents, is still limited. Social settings influence individual behavior; therefore, core settings such as the family need to be considered when designing mobile health (mHealth) apps. OBJECTIVE: The purpose of this study was to evaluate the effectiveness of a theory- and evidence-based mHealth intervention (called SMARTFAMILY [SF]) targeting PA and HE in a collective family-based setting. METHODS: A smartphone app based on behavior change theories and techniques was developed, implemented, and evaluated with a cluster randomized controlled trial in a collective family setting. Baseline (t0) and postintervention (t1) measurements included PA (self-reported and accelerometry) and HE measurements (self-reported fruit and vegetable intake) as primary outcomes. Secondary outcomes (self-reported) were intrinsic motivation, behavior-specific self-efficacy, and the family health climate. Between t0 and t1, families of the intervention group (IG) used the SF app individually and collaboratively for 3 consecutive weeks, whereas families in the control group (CG) received no treatment. Four weeks following t1, a follow-up assessment (t2) was completed by participants, consisting of all questionnaire items to assess the stability of the intervention effects. Multilevel analyses were implemented in R (R Foundation for Statistical Computing) to acknowledge the hierarchical structure of persons (level 1) clustered in families (level 2). RESULTS: Overall, 48 families (CG: n=22, 46%, with 68 participants and IG: n=26, 54%, with 88 participants) were recruited for the study. Two families (CG: n=1, 2%, with 4 participants and IG: n=1, 2%, with 4 participants) chose to drop out of the study owing to personal reasons before t0. Overall, no evidence for meaningful and statistically significant increases in PA and HE levels of the intervention were observed in our physically active study participants (all P>.30). CONCLUSIONS: Despite incorporating behavior change techniques rooted in family life and psychological theories, the SF intervention did not yield significant increases in PA and HE levels among the participants. The results of the study were mainly limited by the physically active participants and the large age range of children and adolescents. Enhancing intervention effectiveness may involve incorporating health literacy, just-in-time adaptive interventions, and more advanced features in future app development. Further research is needed to better understand intervention engagement and tailor mHealth interventions to individuals for enhanced effectiveness in primary prevention efforts. TRIAL REGISTRATION: German Clinical Trials Register DRKS00010415; https://drks.de/search/en/trial/DRKS00010415. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/20534.