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.

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.

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.

Assessing family function: older adults vs. care nurses: a cross-sectional comparative study.

BACKGROUND: This study aimed to assess family function in home care for older adults. Understanding family dynamics is essential for providing quality care to older adults choosing to age in place. METHODS: In a cross-sectional study, 53 patients aged 65 or older receiving home care were evaluated, along with four home care nurses. The General Function of Family Assessment Device (FAD-GF) was used for self-assessment to examine family resources. RESULTS: Only 5.7% of older adults reported good family function. Strong correlations were found between assessments by nurses and older adults. Among the six aspects of family function, "problem solving," "communication," "affective responsiveness," and the overall results showed no disparities between the evaluations of older adults and nurses. CONCLUSIONS: Home care nurses can effectively assess family function using the FAD-GF, particularly after six months of care. This assessment can help identify family issues and enhance home care quality through nurse training in FAD-GF application.

Real emotional experience of family members of patients transported within hospital in neurosurgical intensive care unit: A descriptive qualitative study.

AIM: To understand the real experience of family members of patients in neurosurgical intensive care unit (NICU) during intra-hospital transport (IHT), explore their inner needs and provide effective intervention measures for the construction of standardized IHT plan. DESIGN: A descriptive qualitative study. METHODS: For the purposes of this study, 10 family members of IHT patients were included using a purposive sampling method. Semi-structured in-depth interviews were used to collect the data, Nvivo 11 software was used to organize the data, and Colaizzi's 7-step descriptive phenomenology method was used to analyse the data. RESULTS: A total of three themes and nine subthemes were extracted, namely: Experience of emotional changes at different stages (uncertainty before transfer, complex internal activity during transit, ambivalence after transfer); Perception of problems in IHT (poor doctor-patient communication, weak awareness of risk assessment, deficiencies in the transfer procedure); Consciousness of the real needs (emotional respect and closeness, stay informed of the progression of the disease, greater social support). CONCLUSION: Family members of patients in the NICU have complex internal experiences and multiple support needs during IHT, reflecting the need for further standardization of the transport process. In the future, we should improve the mode of safe IHT involving doctors, nurses and family members of patients, ensure the safety of patient transport, meet the social support needs of family members and improve the experience of IHT and the medical satisfaction of family members.

The palliative care experience in Irish nursing homes during the COVID-19 pandemic: a survey of residents, family, and staff.

BACKGROUND: Nursing homes and other long-term care services account for a disparate share of COVID-19 cases and casualties worldwide. During COVID-19 there is a distinct need to preserve a holistic view of the wellbeing of residents of nursing homes, be mindful of their rights as citizens, and to be aware of protecting residents from infection. The delivery of health and social care throughout a pandemic must remain person-centred and adhere to a human rights-based approach. METHODS: This study aimed to capture nursing home residents, their families and staff's perspective of the nursing homes residents experience, approaches of staff and the nursing home environment. An online survey was distributed via stakeholder networks and online platforms across Ireland. This study was performed and reported in line with the Consensus-Based Checklist for Reporting of Survey Studies (CROSS). RESULTS: 25 residents, 42 family members and 51 staff completed the survey (n = 118). Across the domains measured all but one aspect scored above 50% (residents get up and go to bed when they want 41.5%) with the highest score of 89.1% scored for the nursing home is comfortable and well-kept. Results highlight evidence of positive experiences and endeavours to preserve social connections, residents were in a safe place cared for by staff who did their best in a difficult position and who went above and beyond their duty of care. However, some families reported poor communication, no internet connections, not enough phones or tablets, and that staff were busy and unable at times to assist residents who needed help using phones/tablets. CONCLUSION: This study highlights the importance of human rights and how they ought to inform and shape the advancement of public health advice and policy documents. Overall, nursing home residents, their families and staff reported favourably on the study measures. However, issues pertaining to communication are essential and there is a need to address issues such as the provision of accurate timely information, communication infrastructure and resources, and inconsistencies in communications. Of note is that while healthcare professionals have a duty to uphold the rights of nursing home residents, they themselves have human rights which must also be protected and supported.

Living with an artificial eye: qualitative insights into patient and family member experiences.

PURPOSE: Artificial eye users (AEUs) can experience a negative impact on psychological and emotional wellbeing, including reduced social functioning, which may be a consequence of living with one eye removed, and/or of having a prosthetic eye. This may have wider consequences for their families. We aimed to explore what it means to live with a prosthetic eye, for both AEUs and their families-and how any quality of life (QoL) issues impact on their day-to-day functioning. METHODS: A subset of AEUs and their family members taking part in a feasibility randomised controlled trial comparing hand-painted to digitally printed artificial eyes were invited for semi-structured interviews. Transcripts were analysed using reflexive thematic analysis. Qualitative results related to trial participation are covered elsewhere. Here, we focus on QoL and day-to-day functioning. RESULTS: Twelve AEUs (eight males) and five spouses (one male) who had worn artificial eyes for 2-65 years took part, and four themes were identified. (1) Impact on day-to-day life: AEUs and their spouses have to adapt to (partial) sight loss, reduced levels of confidence, and social withdrawal. (2) Impact on psychological and emotional wellbeing: distress among AEUs and their spouses can be severe and prolonged, highlight unmet support needs. (3) Challenges with treatment experiences: AEUs experienced negative impact of fragmentation of care and long waiting times. (4) Worries about the future: AEUs mentioned fragility of remaining sight, and concerns around potential need for further treatment. CONCLUSION: Patients and their family members experience negative impact of being an AEU on their everyday lives and quality of life. There is a potential role for psychosocial support services in supporting AEUs and their families even long after eye loss.

Investigating spiritual care perceptions and religious coping methods among the relatives of terminally ill patients during the COVID-19 pandemic: the case of Turkey.

BACKGROUND: The COVID-19 pandemic in Turkey and around the world has had a profound impact on the families of terminally ill patients. In this challenging period, investigating the spiritual care perceptions and religious coping methods of patients' relatives is an essential step towards understanding the experiences in this process with the additional challenges brought by the pandemic and developing appropriate support services. This study aims to determine the spiritual care perceptions and the use of religious coping methods among the relatives of terminally ill patients in Turkey during the COVID-19 pandemic. METHODS: The sample of this descriptive and correlational study consisted of the relatives of terminally ill patients (n = 147) who were receiving treatment in the Anesthesiology and Reanimation Intensive Care Unit of a state hospital in Turkey. Spirituality and Spiritual Care Rating Scale and the Religious Coping Scale to them using face-to-face interviews. Mann-Whitney U test, Kruskal-Wallis test, and Spearman's correlation analysis were used to analyze the data. RESULTS: The mean age of the participants was 38.84 ± 11.19 years. Also, 63.3% of them were employed. The participant's total score on the Spirituality and Spiritual Care Rating Scale was 57.16 ± 6.41, and it was determined that the participants' level of perception of spirituality and spiritual care concepts was close to good. When the Religious Coping Scale scores of the participants were examined, it was found that both Positive Religious Coping levels (23.11 ± 2.34) and Negative Religious Coping levels (9.48 ± 1.47) were close to high. There was no correlation between the scores of RCOPE and SSCRS (p > 0.05). CONCLUSION: As a result, it was determined that the level of perception of spirituality and spiritual care concepts of the relatives of terminally ill patients during the COVID-19 pandemic was close to sound, and their Positive Religious Coping levels were high. Epidemics are a reality of the world, and it is essential to learn lessons from this process and take precautions for the future. We offer a perspective to realize the coping power of religion and spirituality, which are integral parts of life. The needs of terminally ill patients' relatives, a sensitive group, become visible.

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.

Development and validation of a questionnaire to measure the congenital heart disease of children's family stressor.

Background: Families of children with congenital heart disease (CHD) face tremendous stressors in the process of coping with the disease, which threatens the health of families of children with CHD. Studies have shown that nursing interventions focusing on family stress management can improve parents' ability to cope with illness and promote family health. At present, there is no measuring tool for family stressors of CHD. Methods: The items of the scale were generated through qualitative interviews and a literature review. Initial items were evaluated by seven experts to determine content validity. Factor analysis and reliability testing were conducted with a convenience sample of 670 family members. The criterion-related validity of the scale was calculated using scores on the Self-Rating Anxiety Scale (SAS). Results: The CHD Children's Family Stressor Scale consisted of six dimensions and 41 items. In the exploratory factor analysis, the cumulative explained variance of the six factors was 61.085%. In the confirmatory factor analysis, the six factors in the EFA were well validated, indicating that the model fits well. The correlation coefficient between CHD Children's Family Stressor Scale and SAS was r = 0.504 (p < 0.001), which indicated that the criterion-related validity of the scale was good. In the reliability test, Cronbach's α coefficients of six sub-scales were 0.774-0.940, and the scale-level Cronbach's α coefficient value was 0.945. Conclusion: The study indicates that the CHD Children's Family Stressor Scale is valid and reliable, and it is recommended for use in clinical practice to assess CHD children's family stressors.

Enhancing immigrant families' mental health through the promotion of structural and community-based support.

Immigrant communities in the United States are diverse and have many assets. Yet, they often experience stressors that can undermine the mental health of residents. To fully promote mental health and well-being among immigrant communities, it is important to emphasize population-level policies and practices that may serve to mitigate stress and prevent mental health disorders. In this paper, we describe the stressors and stress experienced by immigrant families, using Sunset Park, Brooklyn as an example. We discuss ways to build structures and policies in support of equitable environments that promote mental health at the population level and enable families and their children to thrive.

Behavioral Problems and Family Impact in Congenital Cytomegalovirus Infection.

We examined behavior (Child Behavior Checklist) and family functioning (Family Impact Questionnaire) in 65 children with congenital cytomegalovirus. Behavioral problems were present in 30.8%. Parents of children with moderate/severe outcomes reported strain on all areas of family functioning. Behavioral problems were associated with negative impact on parental feelings and marital/partnership relationship. Our findings inform planning support services.

Knowledge, attitude and practice of poststroke depression among patients with poststroke depression and their family members in Heilongjiang Province, China: a cross-sectional study.

OBJECTIVE: This study aimed to investigate the knowledge, attitude and practice (KAP) of poststroke depression (PSD) among patients with PSD and their family members. DESIGN: Web-based cross-sectional study. SETTING: This study was conducted in Heilongjiang Province between October 2022 and April 2023. PARTICIPANTS: Patients with PSD and their family members. PRIMARY AND SECONDARY OUTCOME MEASURES: KAP scores. METHOD: The self-administered questionnaire comprised demographic characteristics, knowledge dimension, attitude dimension and practice dimensions. RESULTS: A total of 489 valid questionnaires were collected, with the average age of the subjects was 54.68±13.80 years, and including 258 (53.09%) patients who had a stroke. The mean scores for KAP were 6.36±2.66 (possible range: 0-10), 29.07±5.18 (possible range: 8-40) and 37.50±8.49 (possible range: 10-50), respectively. Concerning KAP scores, no differences were found between patients with PSD and their family members. Multivariate logistic regression analysis showed that retirement (OR=0.29, 95% CI 0.11 to 0.77, p=0.012) and monthly income less than ¥2000 (OR=0.46, 95% CI 0.27, 0.79, p=0.005) were independently associated with adequate knowledge. Knowledge (OR=2.12, 95% CI 1.44 to 3.14, p<0.001) was independently associated with positive attitude. Knowledge (OR=3.85, 95% CI 2.53 to 5.86, p<0.001) and attitude (OR=1.62, 95% CI 1.06 to 2.47, p=0.024) were independently associated with proactive practice. CONCLUSION: Patients and their family members had insufficient knowledge, positive attitude and moderate practice towards PSD. Retirement and low monthly income were associated with insufficient knowledge, while knowledge was associated with positive attitude and proactive practice.

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.

The family myth in nursing care for children in psychological distress.

This is a theoretical study aimed at reflecting on the contribution of the concept of family myth to nursing care for children in psychological distress. It is methodologically structured around three topics: the importance of the family in caring for children; the perspective of family-centered nursing care for children in psychological distress; and the contribution of the understanding of family myth to nursing care for children in psychological distress. The following dialectic is considered: the family, considered by current literature to be a harmonious unit, also triggers family conflicts that can be the cause of psychological suffering. The concept of family myth emerges as a possible theoretical anchor for nursing care for children in psychological distress, as it allows nurses to consider the signifiers that mark the child's psychological structure and construct their symptoms. Uncovering the place that the family assigns to the child enables nurses to help them construct and elaborate their own place as a subject in their subjectivity.