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.

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.

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.

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.

Caregiving consequences in cancer family caregivers: a narrative review of qualitative studies.

Background: Cancer is a significant public health issue, causing various challenges for individuals affected by it. As cancer progresses, patients often become dependent on others for support. Family caregivers and members play a crucial role in the recovery and rehabilitation of these patients. However, caregivers themselves face numerous challenges throughout the course of their family member's illness. Exploring the experiences of family caregivers can inform long-term planning and supportive interventions to address their caregiving difficulties. This study reviews previous literature on caregiving outcomes. Method: This study presents a narrative review of qualitative studies, analyzing a total of 23 articles. The results were extracted and organized into subcategories. After revision by the research team, main categories were identified. These categories encompass both positive and negative outcomes of caregiving. Results: The findings of this review demonstrate that caring for a family member with cancer has significant implications for caregivers. These implications include: (A) Positive outcomes of caregiving (such as achieving self-management and balance, promoting kinship intimacy, finding meaning and purpose, and experiencing spiritual growth) and (B) Negative outcomes of caregiving (including care-related physical exhaustion, disruption of personal life plans, psycho-emotional consequences, and socio-economic burden). Conclusion: The results of this study highlight the challenges faced by family caregivers and emphasize the importance of addressing their needs within the healthcare system. By providing support and attention to their well-being, caregivers can enhance their resilience and adaptability in managing caregiving difficulties.

Understanding Family Members in the Palliative Phases of Their Loved Ones: A Qualitative Study.

Because of aging and rising rates of chronic diseases, the demand for palliative care services is increasing worldwide, and patients need family members to care for them throughout the palliative care process. This study aimed to investigate the experiences of the relatives of palliative care patients during hospitalization. This was a qualitative study conducted with 15 family members. A topic guide was used to conduct semistructured face-to-face interviews. Content analysis was used to analyze the textual data. As a result of the analysis, 3 main themes, 6 categories, and 24 subcategories emerged. The main themes were "reactions to the admission," "feeling obligated to care," and "coping processes." The interviews revealed that most participants had misconceptions and a lack of knowledge about palliative care. Almost all of the family members expressed that they experienced various emotions during this process and had trouble coping. The significant finding of our study is that culture and religious beliefs have a considerable influence on caregiving. A limited number of studies in the literature provide detailed insight into the state of patient relatives. Therefore, this study is critical in guiding palliative care professionals in understanding the requirements of this vulnerable group.

Falling and rising in the vortex of cancer: children's adaptation with cancer: a qualitative study.

BACKGROUND: Cancer is a considerable health problem worldwide and the second leading cause of death in children. It has many physical, psychological, and social consequences for children and their families. The ability to adapt to cancer plays a vital role in the recovery and quality of life of affected children. This study aimed to explain the adaptation of children with cancer to their disease. METHODS: This qualitative study adopted the directed content analysis approach based on the Roy nursing model. The participants were nine children with cancer aged 6-18 years old, five family members, four nurses, one doctor, one teacher, and two charity association members, recruited by purposive sampling method. The information was collected via individual semi-structured interviews, a focus group discussion, and field notes. The data were analyzed simultaneously with data collection using the Elo and Kyngäs method. The study rigor was ensured based on the Guba and Lincoln criteria. FINDINGS: Of the four categories of physical challenges, fragile self-concept, the difficulty of role transition, and disruption of the path to independence, the theme of Falling and rising in the cancer vortex was abstracted. CONCLUSION: Based on the Roy model, the children in the present study were at the compensatory level of adaptation. This research demonstrates that the adaptation of children being treated for cancer is fragile and not constant. With each hospitalization and exacerbation of the disease, they made efforts to adapt to their disease using regulatory and cognitive subsystems. Paying attention to different stimulants and the effects of support systems on physical challenges, fragile self-concept, difficult role transition, and disruption of the path to independence for each child, as well as providing individualized care for these children, can help their adaptation to and healthy transition from the vortex of cancer. The Roy adaptation model was helpful and efficient for elucidating the adaptation of children with cancer. Providing care for children by healthcare specialists, especially nurses, should be theory-based and individualized.

"It Can Be Confusing": Family Perspectives on Food Insecurity Screening in Urban Pediatric Primary Care Clinics.

Food insecurity, for which families are routinely screened at medical visits, has deleterious health consequences. This study sought to understand the lived experiences of families with lower incomes participating in food insecurity screening at two urban pediatric primary care clinics. Forty-three semi-structured interviews were performed in English and Spanish with families with public insurance after well visits where food insecurity screening was documented. Immersion-crystallization analysis was used to identify salient themes. Families reported discomfort with food insecurity screening, but nonetheless found screening acceptable when performed universally and privately. Families shared confusion about how their screening responses would be used and expected that resources would be available promptly for those who screen positive. Food insecurity screening may be improved for families through explanations of how responses will be used, allowing families to opt out, soliciting family preferences for resource referral, and offering promptly available resources for families with food insecurity.

Negative and positive mental health characteristics of affected family members: Findings from a cross-sectional Australian general population gambling study.

Despite the impact of problem gambling on affected family members (AFMs), there are limited large-scale population level studies identifying the negative mental health (NMH) and positive mental health (PMH) characteristics of AFMs. Furthermore, no study has explored whether PMH characteristics are protective in the relationships between AFM status and NMH characteristics. This study involved secondary data analysis from the Third Social and Economic Impact Study of Gambling in Tasmania. Using a subsample of 1,869 adults (48.30 % male; meanage = 48.48; 4.67 % AFMs), this study aimed to explore whether: (1) AFM status is associated with NMH (depression, anxiety, panic, post-traumatic stress disorder, social anxiety, binge drinking, tobacco use, and drug use symptoms) and PMH (quality of life [QOL], personal growth/autonomy, interpersonal/social skills, coping skills) characteristics after separately controlling for sociodemographic, problem gambling severity, and other NMH characteristics; (2) PMH characteristics moderate (buffer) the relationships between AFM status and NMH characteristics; and (3) gender influences these relationships. AFM status, defined as exposure to family member gambling problems, significantly positively predicted NMH characteristics (depression, anxiety, panic, PTSD, and tobacco use symptoms) and negatively predicted QOL (physical, social) and planning coping. The strength of these relationships generally attenuated after controlling for various covariates. Gender did not moderate these relationships. Religious coping exacerbated the relationship between AFM status and panic disorder symptoms. These findings can inform the development of intervention initiatives for family members exposed to gambling problems. Future population-representative research is required using a range of affected other types, longitudinal study designs, and more comprehensive measures.

Familial and Social Implications of Breast and Gynaecological cancer in Kerala, India.

BACKGROUND: Due to the paucity of reliable data to determine the components of family-based comprehensive care for cancer in India, we explored the familial implications of gynaecological and breast cancer diagnosis and treatment through a mixed-method study. METHODS: The mixed method study included 130 women aged above 18 with a confirmed diagnosis of gynaecological or breast cancer recruited from three selected tertiary hospitals in Kerala, India. Information on quality of life (36-Item Short Form Survey (SF-36)), psychological distress (distress thermometer), and the familial, interpersonal, social, and community impacts of cancer (semi-structured interview guide) were elicited. Linear regression was used to identify the factors associated with distress and the factors were explored further using thematic analysis. RESULTS: Patients included in the study (n = 130; mean age 57.5 years) had moderate or mild (66.9%) to severe (25.4%) distress. Concerns about work (93%), difficulty in; home care and housing (82%), care for dependents (65%), unempathetic family (87.6%), isolation (70%), and body image (65%) were major reasons for their distress. Physiological, social, and family-related stressors among the respondents included challenges in physical functioning, intense physical symptoms like fatigue, loss of appetite and sleep, role restrictions, alterations in family responsibilities, functional dependency, inadequate family support, challenges in social and interpersonal interactions, and an unsupportive work environment. CONCLUSION: Cancer is a health crisis that involves psychological, social, and economic distress, compelling professionals to design multifaceted individualized care packages rather than only concentrating on medical management to alleviate their distress.

Developing a conceptual model for understanding caregiving experience and their impacts on quality of life for Chinese breast cancer family caregivers: A qualitative study.

AIM: The purpose of this study was to understand the caregiving experiences of breast cancer family caregivers and explore the profound impacts of those experiences on their quality of life. DESIGN: A qualitative research method was used. METHODS: We extended invitations to 23 family caregivers of outpatients and inpatients receiving breast surgery and oncology treatments in Taiyuan, China, to participate in semi-structured interviews. The interviews were audio-recorded and transcribed verbatim. Thematic analysis was employed to analyse the interview data. RESULTS: Four themes and associated categories were identified: (1) changes in family dynamics, (2) the socio-medical context, (3) interactions between family and society, (4) self-efficacy and nine subthemes and their related categories, where virtually all participants expressed future uncertainty, emotional contagion, and personal challenges, and self-efficacy had a moderating influence on the first three themes. PATIENT OR PUBLIC CONTRIBUTION: This study did not involve direct participation of patients or the public. However, their experiences and perspectives on caregiving were indirectly reflected through the insights provided by the family caregivers who participated in the interviews. Their valuable input contributed to a deeper understanding of the caregiving experience and its impact on the quality of life for Chinese breast cancer family caregivers.

"It's a stressful, trying time for the caretaker": an interpretive description qualitative study of postoperative transitions in care for older adults with frailty from the perspectives of informal caregivers.

BACKGROUND: Older adults with frailty have surgery at a high rate. Informal caregivers often support the postoperative transition in care. Despite the growing need for family and caregiver support for this population, little is known about the experience of providing informal care to older adults with frailty during the postoperative transition in care. The purpose of this study was to explore what is important during a postoperative transition in care for older adults with frailty from the perspective of informal caregivers. METHODS: This was a qualitative study using an interpretive description methodology. Seven informal caregivers to older adults [aged ≥ 65 years with frailty (Clinical Frailty Scale score ≥ 4) who had an inpatient elective surgery] participated in a telephone-based, semi-structured interview. Audio files were transcribed and analyzed using reflexive thematic analysis. RESULTS: Four themes were constructed: (1) being informed about what to expect after surgery; (2) accessible communication with care providers; (3) homecare resources are needed for the patient; and (4) a support network for the caregivers. Theme 4 included two sub-themes: (a) respite and emotional support and (b) occupational support. CONCLUSIONS: Transitions in care present challenges for informal caregivers of older adults with frailty, who play an important role in successful transitions. Future postoperative transitional care programs should consider making targeted information, accessible communication, and support networks available for caregivers as part of facilitating successful transitions in care.

A Shifting Paradigm Toward Family-Centered Care in Neuro-Oncology: A Longitudinal Quasi-Experimental Mixed-Methods Feasibility Study.

Family-centered intervention can help families facing illness-related issues. We investigated the feasibility of Family and Network Conversations (FNCs) in high-grade glioma patients and their families. Quasi-experimental feasibility study with longitudinal mixed-methods design. Patients and families were invited to three FNCs over 1 year. They completed questionnaires at four time points and expressed their perspectives on the intervention through telephone interviews. Nurses' perspectives were collected in a focus group. Twenty-one patients and 47 family members were included. On average, patients were 66 years old, mainly male, married, living with caregivers, with unifocal cancer. On average, caregivers were 47 years old, mainly female, being spouses or children of the patient. Quantitative and qualitative data did not always match and expanded each other. Nurse-delivered FNCs holistically addressed families' needs while strengthening family's dialogue and union. Nurses felt empowered, underling that advanced competencies were required. Nurse-delivered FNCs are feasible to provide family-centered care, but they should be tailored to each family's needs.

Caregiver experiences of caring for family members with urostomy: a qualitative study.

OBJECTIVE: In China, bladder tumors rank first for morbidity and mortality among urological and reproductive system tumors. Total radical cystectomy plus urinary flow conversion is the gold standard for the treatment of muscle-layer invasive bladder cancer. With an increasing number of radical cystectomies each year, the number of patients living with urostomy is growing. After discharge, primary care of urostomy patients is given at home, and high demands are placed on home caregivers due to issues of privacy and the complexity of replacing the urostomy device. This research explored the challenges faced by the family caregivers of urostomy patients. METHODS: We used descriptive qualitative research methods to conduct interviews with twenty-five family caregivers of patients with urostomy. Survey subjects were from five general hospitals. All interviews were recorded, transcribed, and analyzed using thematic analysis. RESULTS: Three critical challenges were identified-confusion, family crisis, and struggle psychology. Within these three themes, six sub-themes were constructed by coders. They were knowledge and skill deficiency, strong insecurities and uncertainties, role conflict, economic burden, emotional overwhelmed and calm acceptance. CONCLUSION: Family caregivers play a critical role in patient care, and especially in urostomy care. Caregiving is associated with significant challenges that hinder the family caregiver's ability to effectively care for the patient, further diminishing the caregiver's quality of life. Therefore, healthcare professionals should consider the challenges faced by family caregivers and take measures to obviate them through education, preparation, and support.

The lived experience of people affected by cancer: A global cross-sectional survey protocol.

A diagnosis of cancer impacts the person's physical and mental health and the psychosocial and financial health of their caregivers. While data on the experience of living with cancer is available, there is a dearth of data from persons in low- and middle-income countries (LMICs). The perspectives of other impacted individuals also remain understudied (e.g., bereaved family members), as well as the impact on survivors and their families over time. The objective of this study is to describe the psychosocial and financial impact of cancer on people diagnosed with cancer as a child, adolescent or adult, their families/caregivers, and the family members of those who have died from cancer, in high-income countries (HICs) and LMICs. This study is an observational, descriptive, quantitative study. Data will be collected anonymously via a digital online cross-sectional survey distributed globally by the World Health Organization (WHO) via the LimeSurvey software. Participants will include (a) adults aged 18+ who have been diagnosed with cancer at any age, who are currently undergoing cancer treatment or who have completed cancer treatment; (b) adult family members of individuals of any age with a cancer diagnosis, who are currently undergoing cancer treatment or who have completed cancer treatment; and (c) bereaved family members. Participants will be anonymously recruited via convenience and snowball sampling through networks of organisations related to cancer. Survey results will be analysed quantitatively per respondent group, per time from diagnosis, per disease and country. Results will be disseminated in peer-reviewed journals and at scientific conferences; a summary of results will be available on the WHO website. This study will suggest public health interventions and policy responses to support people affected by cancer and may also lead to subsequent research focusing on the needs of people affected by cancer.

The experience of receiving a letter from a cancer genetics clinic about risk for hereditary cancer.

Direct contact may be an option for supporting disclosure in families with hereditary cancer risk. In this qualitative interview study, we explored how healthy at-risk relatives experience receiving a letter with information about hereditary cancer directly from healthcare rather than via a relative. The study is part of an ongoing multicentre randomised clinical trial in Sweden that evaluates the effectiveness of direct letters from cancer genetics clinics to at-risk relatives. After conducting semi-structured interviews with 14 relatives who had received a letter and contacted the clinic, we analysed the data using thematic analysis. The relatives had different levels of prior knowledge about the hereditary cancer assessment. Many had been notified by family that a letter was coming but some had not. Overall, these participants believed healthcare-mediated disclosure could complement family-mediated disclosure. They expressed that the letter and the message raised concerns and a need for counselling, and they wanted healthcare to be accessible and informed when making contact. The participants found the message easier to cope with when they had been notified by a family member beforehand, with a general attitude that notifying relatives was the appropriate step to take. They thought healthcare should help patients with the disclosure process but also guard the right of at-risk relatives to be informed. The findings support a direct approach from healthcare as a possible complement to an established model of family-mediated risk disclosure, but implementation must be made within existing frameworks of good practice for genetic counselling.

A Randomized Trial of Two Remote Health Care Delivery Models on the Uptake of Genetic Testing and Impact on Patient-Reported Psychological Outcomes in Families With Pancreatic Cancer: The Genetic Education, Risk Assessment, and Testing (GENERATE) Study.

BACKGROUND & AIMS: Genetic testing uptake for cancer susceptibility in family members of patients with cancer is suboptimal. Among relatives of patients with pancreatic ductal adenocarcinoma (PDAC), The GENetic Education, Risk Assessment, and TEsting (GENERATE) study evaluated 2 online genetic education/testing delivery models and their impact on patient-reported psychological outcomes. METHODS: Eligible participants had ≥1 first-degree relative with PDAC, or ≥1 first-/second-degree relative with PDAC with a known pathogenic germline variant in 1 of 13 PDAC predisposition genes. Participants were randomized by family, between May 8, 2019, and June 1, 2021. Arm 1 participants underwent a remote interactive telemedicine session and online genetic education. Arm 2 participants were offered online genetic education only. All participants were offered germline testing. The primary outcome was genetic testing uptake, compared by permutation tests and mixed-effects logistic regression models. We hypothesized that Arm 1 participants would have a higher genetic testing uptake than Arm 2. Validated surveys were administered to assess patient-reported anxiety, depression, and cancer worry at baseline and 3 months postintervention. RESULTS: A total of 424 families were randomized, including 601 participants (n = 296 Arm 1; n = 305 Arm 2), 90% of whom completed genetic testing (Arm 1 [87%]; Arm 2 [93%], P = .014). Arm 1 participants were significantly less likely to complete genetic testing compared with Arm 2 participants (adjusted ratio [Arm1/Arm2] 0.90, 95% confidence interval 0.78-0.98). Among participants who completed patient-reported psychological outcomes questionnaires (Arm 1 [n = 194]; Arm 2 [n = 206]), the intervention did not affect mean anxiety, depression, or cancer worry scores. CONCLUSIONS: Remote genetic education and testing can be a successful and complementary option for delivering genetics care. (Clinicaltrials.gov, number NCT03762590).

Exploring grandparents' psychosocial responses to childhood cancer: A qualitative study.

OBJECTIVE: A childhood cancer diagnosis is a traumatic experience for patients and their families. However, little is known about the effect on grandparents. We aimed to investigate the negative psychosocial impact, coping strategies, and positive outcomes of grandparents of childhood cancer patients in Switzerland. METHODS: We collected data using a semi-structured interview guide and applied qualitative content analysis. RESULTS: We conducted 20 interviews with 23 grandparents (57% female; mean age = 66.9 years; SD = 6.4; range = 57.0-82.4) of 13 affected children (69% female; mean age = 7.5 years; SD = 6.1; range = 1.0-18.9) between January 2022 and April 2023. The mean time since diagnosis was 1.0 years (SD = 0.5; range = 0.4-1.9). Grandparents were in shock and experienced strong feelings of fear and helplessness. They were particularly afraid of a relapse or late effects. The worst part for most was seeing their grandchild suffer. Many stated that their fear was always present which could lead to tension and sleep problems. To cope with these negative experiences, the grandparents used internal and external strategies, such as accepting the illness or talking to their spouse and friends. Some grandparents also reported positive outcomes, such as getting emotionally closer to family members and appreciating things that had previously been taken for granted. CONCLUSIONS: Grandparents suffer greatly when their grandchild is diagnosed with cancer. Encouragingly, most grandparents also reported coping strategies and positive outcomes despite the challenges. Promoting coping strategies and providing appropriate resources could reduce the psychological burden of grandparents and strengthen the whole family system.

Factors of preparedness for loss from cancer among Taiwanese family caregivers.

This cohort study investigated factors associated with 336 Taiwanese family caregivers' emotional and cognitive preparedness for death of a loved one with terminal cancer. Caregivers' death-preparedness states (no-death-preparedness [as reference], cognitive-death-preparedness-only, emotional-death-preparedness-only, and sufficient-death-preparedness states) were previously identified. Associations of factors with these states were determined by a hierarchical generalized linear model. Financial hardship decreased caregivers' likelihood for the emotional-death-preparedness-only and sufficient-death-preparedness states. Physician prognostic disclosure increased membership in the cognitive-death-preparedness-only and sufficient-death-preparedness states. The better the quality of the patient-caregiver relationship, the higher the odds for the emotional-death-preparedness-only and sufficient-death-preparedness states, whereas the greater the tendency for caregivers to communicate end-of-life issues with their loved one, the lower the odds for emotional-death-preparedness-only state membership. Stronger coping capacity increased membership in the emotional-death-preparedness-only state, but perceived social support was not associated with state membership. Providing effective interventions tailored to at-risk family caregivers' specific needs may facilitate their death preparedness.

Perspectives of telemedicine-based services among family caregivers of patients with end-of-life cancer: a qualitative study in mainland China.

BACKGROUND: Despite being driven by a strong sense of duty and familial obligation, providing care for patients nearing the end of life poses challenges for family caregivers. Telemedicine has rapidly gained traction as a transformative approach to healthcare delivery, offering an array of benefits that could be particularly valuable in end-of-life care. However, research on the perspectives of telemedicine-based services among family caregivers of patients with end-of-life cancer is limited. Therefore, this study aims to explore the perspectives and preferences of telemedicine-based services among family caregivers of patients with end-of-life cancer and provide a framework for developing and executing a tailored telemedicine-based end-of-life care program that addresses the unique needs of family caregivers in mainland China. METHOD: A descriptive phenomenological approach was used. Family caregivers were selected using purposive sampling at a tertiary cancer hospital. One-on-one semi-structured interviews were conducted with the participants from November to December 2022. Colaizz's method was used to analyze the interviews. RESULTS: Fourteen participants participated in interviews. Three themes and ten subthemes were identified: motivation to receive telemedicine services (relief from the burden of home care; access to professional health care services), supportive care needs for telemedicine services (support for symptom management; negative emotional adjustment; death education; daily life care guidance), and functional expectations of telemedicine service platforms (ease of use; real-time online guidance and response; personalized automatic reminder; targeted matching push of health knowledge). CONCLUSION: Family caregivers expressed interest in telemedicine-based services and identified various care needs before receiving telemedicine services. The findings of this study can help policymakers and healthcare providers develop more effective and culturally appropriate telemedicine-based service programs that can better support family caregivers of end-of-life cancer patients.