Supporting family caregivers (FCs) is a critical core function of palliative care. Brief, reliable tools suitable for busy clinical work in Taiwan are needed to assess bereavement risk factors accurately. The aim is to develop and evaluate a brief bereavement scale completed by FCs and applicable to medical staff.

This study adopted convenience sampling. Participants were approached through an intentional sampling of patients’ FCs at 1 palliative care center in Taiwan. This cross-sectional study referred to 4 theories to generate the initial version of the Hospice Foundation of Taiwan Bereavement Assessment Scale (HFT-BAS). A 9-item questionnaire was initially developed by 12 palliative care experts through Delphi and verified by content validity. A combination of exploratory factor analysis (EFA), reliability measures including items analysis, Cronbach’s alpha and inter-subscale correlations, and confirmatory factor analysis (CFA) was employed to test its psychometric properties.

Two hundred seventy-eight participants conducted the questionnaire. Three dimensions were subsequently extracted by EFA: “Intimate relationship,” “Existential meaning,” and “Disorganization.” The Cronbach’s alpha of the HFT-BAS scale was 0.70, while the 3 dimensions were all significantly correlated with total scores. CFA was the measurement model: chi-squared/degrees of freedom ratio = 1.9, Goodness of Fit Index = 0.93, Comparative Fit Index = 0.92, root mean square error of approximation = 0.08. CFA confirmed the scale’s construct validity with a good model fit.

This study developed an HFT-BAS and assessed its psychometric properties. The scale can evaluate the bereavement risk factors of FCs in clinical palliative care.

Caring for children with solid tumors (STs) can impact caregiver’s physical and mental health. Caregiver mastery, which influences psychological well-being, is vital in improving outcomes for both caregivers and children. The study aimed to investigate the relationship between caregiver mastery, anxiety, depression, fear of disease progression (FoP), caregiver burden, and the quality of life (QOL) of children with ST.

This cross-sectional study was conducted from June 2022 to April 2023 at a Grade A tertiary hospital in Shandong. Family caregivers of children with ST completed several validated measures, including the Pediatric Quality of Life Inventory (PedsQL) 3.0 Cancer Module, the Fear of Progression Questionnaire-parent version (FoP-Q-SF/PR), the Zarit Burden Interview Scale (ZBI), the hospital anxiety and depression scale (HADS), and the Caregiver Mastery Scale. Multiple linear regression analyses assessed the relationships between FoP, caregiver burden, anxiety, depression, caregiver mastery, and children’s QOL. Results were expressed as β and 95% confidence intervals (CIs).

A total of 454 caregivers participated. Caregiver mastery was positively correlated with children’s QOL (β = 0.80, 95% CI: 0.20 to 1.39). Depression (β = −0.64, 95% CI: −0.83 to −0.45), anxiety (β = −0.67, 95% CI: −0.85 to −0.49), caregiver burden (β = −1.20, 95% CI: −1.60 to −0.80), and FoP (β = −0.04, 95% CI: −0.05 to −0.03) were negatively related to children’s QOL. Caregiver mastery moderated the associations between depression, caregiver burden, FoP, and children’s QOL, while also improving the effect of mild anxiety on QOL.

The study underscores the importance of fostering caregiver mastery to mitigate the negative impact of caregiver distress on children’s QOL and improve outcomes for both caregivers and children with solid tumors.

Caregiver mastery moderates the effects of anxiety, depression, FoP, and caregiver burdenon children’s QOL. Supporting caregiver mastery can alleviate caregiver burden and enhance both caregiver and child well-being.

In home-based care for severely ill patients, family caregivers’ contributions are crucial. This study aimed to explore how a web-based psychoeducational intervention influences family caregivers’ experiences in addressing challenges while caring for a patient with life-threatening illnesses during specialized home care.

This qualitative study undertook semi-structured interviews with family caregivers of patients with life-threatening illness receiving specialized home care. Family caregivers participated in a randomized controlled trial evaluating a psychoeducational intervention delivered through a website. Interviews were performed with 17 family caregivers; 13 spouses, 2 adult children, 1 parent, and 1 sibling, and analyzed using qualitative content analysis.

The results indicate that the intervention resonated with the family caregivers’ situation which gave them comfort and awareness. It inspired self-reflection on the caregiver role that provided new insights and encouraged communication with the patient. The intervention prepared family caregivers for the patient’s progressing illness and death. While preparing was a help for some, others did not feel ready to face this, which led them to avoid parts of the website.

This psychoeducational web-based intervention guided family caregivers as they addressed challenges in caregiving and prepared for the future, and they valued having access to such an intervention. In a time of decreasing healthcare resources, web-based support may be a useful alternative to in-person interventions. It is important to continue developing, evaluating, and implementing web-based interventions to meet the needs of family caregivers.

Pandemic-related restrictions in nursing homes have undermined the critical role that family and friend caregivers play in enhancing resident quality of life.

We examined how family caregiver access restrictions in nursing homes were implemented and how they impacted the mutual well-being of and relationships between residents and their caregivers over time. Methods Between March 2021 and march 2022, 24 ‘designated caregivers’ in Atlantic Canada were interviewed three times.

We identified changes in family relationships and activities over time, constricted support networks, the increasing need for advocacy and monitoring, and the generally negative cumulative impacts of restrictions, especially during residents’ end-of-life. Subsequent adaptations to access restrictions allowed caregivers to contribute to essential monitoring, care relationships, and advocacy roles.

We argue that the role of designated caregivers in nursing homes must be maintained during public health emergencies to ensure resident’s supportive family relationships and general well-being.

Coping styles can be improved by dyadic palliative care interventions and may alleviate patients’ and family caregivers’ distress. Moreover, family caregivers’ preloss resilience protects against depression after bereavement. This study aimed to determine the types of coping styles can be encouraged to increase resilience.

A self-reported questionnaire survey was administered to family caregivers at the 4 palliative care units, and their resilience was assessed using the Connor–Davidson Resilience Scale (CD-RISC) and their coping styles were assessed using the Brief Coping Orientation to Problem Experienced, as well as their background characteristics.

Among 291 caregivers with a mean CD-RISC score of 56.2 (standard deviation: 16.13), internal locus of control, educational level, and history of psychotropic drug use were associated with resilience. After adjusting for the aforementioned factors, more frequent use of positive coping styles such as active coping (Spearman’s ρ = 0.29), acceptance (ρ = 0.29), positive reframing (ρ = 0.29), planning (ρ = 0.24), and humor (ρ = 0.18), was found to be associated with higher resilience. On the contrary, more frequent use of negative coping styles such as behavioral disengagement (ρ = −0.38), self-blame (ρ = −0.27), and denial (ρ = −0.14) was found to be associated with less resilience.

By assessing internal locus of control, educational level, and history of psychotropic medication use of family caregivers, as factors associated with their respective resilience, may help identify less resilient family caregivers who are at risk for developing major depression after bereavement. In addition, coping skill-based educational interventions targeting patients and their family caregivers that focus on specific coping styles associated with resilience may increase family caregivers’ resilience, resulting in less emotional distress and a lower risk of major depression after bereavement.

Around 95% of Chinese with dementia in Australia and China reside at home and are cared for by family members. The World Health Organization (WHO) iSupport program has been translated into simplified and traditional Chinese and culturally adapted to the Chinese populations in Australia, Mainland China, Taiwan, Hong Kong and Macau. The objective of this study was to explore family caregivers’ experience in a 6-month randomized controlled trial of a facilitator-enabled iSupport intervention program that includes the utilization of the online iSupport and peer support activities.

A qualitative descriptive design was applied to address the study objective. Caregivers’ interactions with peers and program facilitators in monthly online meetings were audio-recorded and transcribed verbatim for data analysis. Facilitators were required to document their support for caregivers in their monthly portfolios and submit for data analysis. Thematic analysis was used to analyse data collected from online caregiver meetings and facilitator portfolios.

Five main themes were identified from data. First, caregivers were able to follow the group learning goal to complete their monthly learning activities using the online iSupport. They were also capable of selecting additional learning units from iSupport to meet their individual learning needs. Second, caregivers perceived that iSupport enabled them to change their responses to changed behaviours their care recipients had by which they reduced the sources of stressor in their daily care. Third, caregivers were willing and felt safe to share their stressors and seek help from peers and facilitators in group meetings. Fourth, caregivers demonstrated their enthusiasm to help their peers reduce their stressors and social isolation by searching and sharing various electronic resources via Wechat or Whatsapp platform throughout the trial. In addition, facilitators were able to assess caregivers’ learning needs and link them with relevant care services and resources accordingly.

Facilitator-enabled iSupport intervention in our study demonstrated advantages of engaging caregivers in learning iSupport, applying knowledge into daily care activities, sharing experiences with and supporting other caregivers.

Caregivers require tangible (e.g. food and financial) and intangible resources to provide care to ensure child health, nutrition and development. Intangible resources include beliefs and knowledge, education, self-efficacy, perceived physical health, mental health, healthy stress levels, social support, empowerment, equitable gender attitudes, safety and security and time sufficiency. These intangible caregiver resources are included as intermediate outcomes in nutrition conceptual frameworks yet are rarely measured as part of maternal and child nutrition research or evaluations. To facilitate their measurement, this scoping review focused on understudied caregiver resources that have been measured during the complementary feeding period in low- and lower-middle-income countries.

We screened 9,232 abstracts, reviewed 277 full-text articles and included 163 articles that measured caregiver resources related to complementary feeding or the nutritional status of children 6 months to 2 years of age.

We identified measures of each caregiver resource, though the number of measures and quality of descriptions varied widely. Most articles (77 %) measured only one caregiver resource, mental health (n 83) and social support (n 54) most frequently. Psychometric properties were often reported for mental health measures, but less commonly for other constructs. Few studies reported adapting measures for specific contexts. Existing measures for mental health, equitable gender attitudes, safety and security and time sufficiency were commonly used; other constructs lacked standardised measures.

Measurement of caregiver resources during the complementary feeding period is limited. Measuring caregiver resources is essential for prioritising caregivers and understanding how resources influence child care, feeding and nutrition.

Advancements in medicine and science have enabled more and more people to live longer with a chronic medical condition, namely cancer. Nevertheless, the palliative care (PC) approach continues to be introduced and incorporated later in the lives of patients and families dealing with such conditions. Thus, the need for individuals to care for this population in our society is increasing, giving rise to the so-called “informal caregivers.” The present study intends to examine the main obstacles faced by informal caregivers taking care of a cancer patient receiving PC based on what health professionals working in these settings perceive and write down. To achieve this goal, the written files of 2 Portuguese palliative care institutions were analyzed.

An inductive thematic analysis was conducted, focusing on the contact between health professionals and family caregivers and based on the notes taken by health professionals.

Three main overarching themes were identified: (1) burden, (2) intra-family impact of the illness, and (3) network vulnerabilities. Included in this are the emphasis on the role of the family and social support, the high levels of psychological morbidity and caregiver burden present over this period, and a great need for information about the illness.

This study provided a broader awareness regarding the daily struggle experienced by family caregivers, particularly those who juggle between “roles.” It is vital to understand the scope of the obstacles experienced by caregivers during the terminal phase of their loved one’s illness, given how important it is to address the family’s needs. Future studies and practitioners should consider these observations and topics when considering new approaches for this population, as they ought to be quite focused and short in time in order to meet people’s needs.

Cancer has become a chronic disease that requires a considerable amount of informal caregiving, often quite burdensome to family caregivers. However, the influence of spirituality on the caregivers’ burden and mental health outcomes has been understudied. This study was to examine how caregiver burden, spirituality, and depression change during cancer treatment and investigate the moderating role of spirituality in the relationship between caregiver burden and depression for a sample of caregivers of persons with cancer.

This secondary analysis used a longitudinal design employing 3 waves of data collection (at baseline, 3 months, and 6 months). Family caregivers completed the Caregiver Reaction Assessment, Spiritual Perspective Scale, and the PROMIS® depression measure. Linear mixed model analyses were used, controlling for pertinent covariates.

Spirituality, total caregiver burden, and depression remained stable over 6 months. More than 30% of the caregivers had mild to severe depressive symptoms at 3 time points. There was evidence of overall burden influencing depression. Of note was a protective effect of caregivers’ spirituality on the relationship between depression and caregiver burden over time (b = −1.35, p = .015). The lower the spirituality, the stronger the relationship between depression and burden, especially regarding subscales of schedule burden, financial burden, and lack of family support.

Spirituality was a significant resource for coping with caregiving challenges. This study suggests that comprehensive screening and spiritual care for cancer caregivers may improve their cancer caregiving experience and possibly influence the care recipients’ health.

The deathbed symbolizes a time when the patient is dangerously ill and where death is imminent. The memories of family caregivers during this time can potentially shape their meaning-making of the patient’s death and bereavement adjustment. We aimed to understand the experiences of family caregivers at the deathbed of patients receiving palliative care. We also examined caregiver’s meaning-making that occurred after the patient’s death.

In this retrospective qualitative study, family caregivers of cancer patients who received palliative care in Singapore were recruited through purposive sampling. In-person, semi-structured interviews were individually conducted with study participants to understand their experiences from a caregiver’s perspective before and after the death of the patient. Thematic content analysis method was conducted.

A total of 25 bereaved family caregivers were interviewed, with spouses, adult children, and others comprising one-third each of the sample. Six themes emerged from caregivers’ recollected experiences around the patient deathbed: Lasting image of the patient, A time of intense emotions, Healthcare providers prepare caregivers, A time for saying goodbye, Rituals provide comfort, and Impact on family ties. Four themes emerged surrounding post-loss meaning-making: An end to the pain and suffering, “Have I done enough?,” Significance in the timing of events, and Gaining strength and personal growth.

The deathbed is a salient time for family caregivers as they prepare for patient’s death. There are opportunities to provide support to the family based on the study findings.

This study aims to examine (1) the prevalence of demoralization among family caregivers of palliative care patients (PCP) in Hong Kong, (2) the percentage of caregivers who are demoralized but not depressed, (3) the factors associated with demoralization, and (4) the differences in caregivers’ support needs between high and low levels of demoralization groups.

Ninety-four family caregivers were recruited and completed a questionnaire that included measures of demoralization, depression and caregiving strain, caregivers’ support needs, and demographic information.

The prevalence of demoralization among family caregivers of PCP was found to be 12.8% (cutoff score = 50) and 51.1% (cutoff score = 30). Although 27.7% of caregivers met the criteria of depression and demoralization, 12.8% of demoralized caregivers were not depressed. Depression and caregiving strain were identified as the predictors of demoralization. Caregivers with a poorer subjective physical status and a lower education level are more prone to demoralization. The three major caregivers’ needs for support reported were (1) knowing what to expect in the future (77.7%); (2) knowing who to contact (74.5%); and (3) understanding your relative’s illness (73.4%). Those who experienced a high level of demoralization often reported more need for support in end-of-life caregiving.

This is the first study that focused on the demoralization of family caregivers of PCP in the East Asian context. Demoralization is prevalent among these caregivers. We recommend that early assessment of demoralization among family caregivers of PCP be considered, especially for those who are more depressed and have a higher level of caregiving stress.

End-of-life (EoL) processes are a complex socio-normative and ethical phenomenon. This study aimed to generate a database of public opinion in Israel concerning EoL processes and decisions and to identify differences in attitudes across subgroups in the population, particularly based on experience as a family caregiver of a dying patient.

This cross-sectional study was performed in late March 2022. The study utilized an online sample of 605 adults over the age of 50 including those who accompanied a loved one to their death in the last 3 years. Participants were requested to provide their opinions and attitudes on several aspects of EoL decisions, including truth-telling, medically assisted dying, EoL procedures, pre-death actions, and family caregivers’ engagement.

While only 27% and ∼30% of participants support artificial respiration or feeding (respectively) of terminally ill patients, 66% support analgesic treatment, even at the risk of shortening life. The data show an association between religiosity and agreement with life-extending procedures. For example, while 83% of seculars support medically assisted dying, only 59% and 26% of traditional and religious respondents support it. However, no statistically significant differences were observed in support of family involvement in EoL process in any sociodemographic variable.

The results of this study suggest that the Israeli public is relatively polarized on several issues about EoL processes, specifically patient autonomy and medically assisted dying. Yet, at the same time, there is a consensus among the Israeli public about certain EoL elements, particularly the importance of family caregivers in the EoL decision-making process.

Caregiving for family members at their end of life is stressful. Caregivers’ strain, burden, or stress has been measured in various geographical and sociodemographic contexts. The concept of stress, burden, and strain are sometimes used interchangeably. By analysing the factor structure of the Chinese version of the Modified Caregiver Strain Index (C-M-CSI), this study aimed to examine the caregiving strain concept and its demographic correlates.

A sample of 453 family caregivers of patients with a terminal illness in Hong Kong was employed. Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) were performed. In addition, generalized linear models (GLM) were used to examine the demographic correlates.

The EFA yielded a 3-factor model termed “Perception of Caregiving,” “Empathetic Strain,” and “Adjustment Demand.” This 3-factor model explained 50% of the variance and showed good internal consistency. The CFA confirmed the 3-factor construct with satisfactory internal reliability (χ2 [61, N = 226] = 108.86, p < 0.001, CFI = 0.96, TLI = 0.95, SRMR = 0.04, and RMSEA = 0.06). Inspired by this factor structure and concepts of stress and strain from engineering discipline, a new model of caregiver strain is proposed. Additionally, family caregivers of non-cancer patients, who were not living with the patient, or younger were associated negatively with different dimensions of caregiver strain.

The results gave insights into the advancement of the conceptualization of caregiver strain, its multidimensional nature, and process of change, which inform directions for future research and practices.

Family caregivers’ (FCs) caregiving in nursing home (NH) moves across 3 main phases: transitioning relatives to long-term care, worsening of a relative’s conditions, and end of life; each phase brings specific challenges that FCs must confront. Moreover, during the COVID-19 pandemic, strict mandatory visitor restrictions affected communication modalities. This study explored FCs’ experience of communication with NH staff during the COVID-19 pandemic from admission to end of life.

A descriptive qualitative study with inductive content analysis was performed in 7 Italian NHs from May to June 2021. NH managers purposively identified 25 FCs at different phases of their caregiving trajectory: transitional (i.e., admission in the previous 8 weeks, n = 8), deterioration-in-condition (i.e., acknowledged changes in care needs of their relative after trigger events, n = 10), and end-of-life phase (i.e., death expected in the next weeks or a few months, n = 7), who were interviewed.

Regardless the phase of caregiving trajectory, what mattered most to FCs was the opportunity to have regular and sensitive discussions with health-care professionals. The need of in-person communication increased nearing death. The COVID-19 pandemic enhanced FCs’ need to interact with health-care professionals they trusted. Knowledge of residents’ preferences mitigated FCs’ turbulent emotions throughout the overall caregiving trajectory.

Findings suggest that in-person contacts should be prioritized and facilitated when possible, particularly at the end of life; nonetheless, meaningful communication can occur also through remote modalities. Investments in training health-care professionals about effective long-distance communication and supportive skills can help trusting relationships to be established. Open discussions about residents’ care preferences should be encouraged.

Psychoeducational interventions for family caregivers have shown to be effective but not possible for all caregivers to attend; thus, web-based interventions may be a complement. This study aimed to evaluate feasibility of a web-based intervention, “narstaende.se,” from the perspective of spouses of patients receiving specialized home care.

A website was developed, containing videos with conversations between health-care professionals and family caregivers (actors), informative texts, links to further information, and a chat forum. The aim of the website is to provide support and promote preparedness for caregiving and death, and the content is theoretically and empirically grounded. The study had a descriptive cross-sectional design. Altogether, 26 spouses answered a questionnaire, before accessing the website, and 4 weeks after this, 12 spouses were interviewed. Descriptive statistics and qualitative content analysis were used.

Spouses experienced the website as being easy to use, welcoming, and with relevant content. Participating spouses would recommend “narstaende.se” to others in similar situations, and the majority found the website introduced timely. Videos seemed easily accessible and were most used, contributing to a feeling of recognition and sharing the situation. The online format was perceived as flexible, but still not all spouses visited the website, stating the desire for support in real life.

A web-based intervention can be feasible for spouses in specialized home care; however, the digital format is not suitable for everyone. Further research is needed to determine the website’s potential to provide support and increase preparedness for family caregivers in general.