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1.
Am J Hosp Palliat Care ; : 10499091241268578, 2024 Aug 02.
Article in English | MEDLINE | ID: mdl-39093015

ABSTRACT

BACKGROUND: Behavioral health disorders are common among patients and caregivers in the hospice setting. Yet, limited data exist regarding what hospice providers perceive as the most common and challenging behavioral health disorders they encounter and how they manage these issues in practice. OBJECTIVE: To characterize the perspectives of hospice medical directors (HMDs) on addressing the behavioral health challenges when caring for patients enrolled in home hospice care and their family caregivers. METHODS: Semistructured interviews with seventeen certified HMDs were conducted. Data were analyzed using thematic analysis. RESULTS: Many HMDs agreed that delivering high-quality behavioral health care is a tenet for good end-of-life (EoL) care. HMDs shared that depression and anxiety were the most common behavioral health challenges they encountered, while among caregivers, substance use disorder was the most challenging. Participants mentioned that nurses and social workers played a vital role in detecting and managing behavioral health problems. HMDs also stated that providing additional training for frontline staff and incorporating behavioral health experts are potential solutions to help address current challenges. CONCLUSION: HMDs emphasized the importance of addressing behavioral health challenges among patients and caregivers to provide effective end-of-life care. Future studies should examine the viewpoints of additional key stakeholder groups (e.g., hospice interdisciplinary team members, family caregivers) and confirm them in quantitative studies. Designing and implementing evidence-based assessments and interventions to improve behavioral health care by addressing anxiety, depression, and caregiver substance use disorders is essential to improving care and care outcomes in the hospice setting.

2.
Fam Process ; 2024 Aug 01.
Article in English | MEDLINE | ID: mdl-39091082

ABSTRACT

Burden and psychological distress are higher in informal caregivers (ICs) of people with severe emotional and behavior dysregulation who have been given a diagnosis of borderline personality disorder (BPD) compared with non-caregivers. The current cross-sectional study examines the difference in outcomes of ICs of people with BPD who have received the intervention Family Connections (FC) and who also led interventions for other caregivers (caregiver-leaders) compared with those who have attended FC but not led caregiver interventions (non-leader-FC participants). The sample for this research is from a larger study (Hayes et al., 2023, Borderline Personality Disorder and Emotion Dysregulation, 10, 31). Data for 347 participants who self-reported receiving FC and completed the McLean Screening Instrument for BPD-Carer Version, the Brief COPE, the Multidimensional Scale of Perceived Social Support, the Kessler Psychological Distress scale, the WHO-5 Well-being Index, and the Coronavirus Anxiety Scale were analyzed. The results found that being a caregiver-leader was associated with higher positive mental well-being and lower psychological distress compared with non-leader-FC participants. Being a caregiver-leader was also associated with significantly greater use of the coping strategy of positive reframing and lower use of behavioral disengagement and self-blame than non-leader-FC participants. The study provides preliminary evidence that for those who have received FC, becoming an intervention leader is associated with better outcomes than caregivers who do not become leaders and provides support for caregiver-led rollout of FC across services.

3.
Glob Pediatr Health ; 11: 2333794X241258657, 2024.
Article in English | MEDLINE | ID: mdl-39086597

ABSTRACT

Objectives. Important factor in caring for ASD patients is the successful cooperation between the physician and the parent. Methods. The online survey has been conducted. For statistical analysis the t-student test and the U-Mann Whitney test were performed to compare 2 variables, then the Kruskal-Wallis test or ANOVA as well as The Pearson correlation and Sperman's rank correlation were performed. Results. 80.5% of respondent's PHPs did not notice the child's developmental difficulties. 22.02% of respondents can speak to their PHP about a child's difficulties. PHPs take different strategies to make patient contact with the healthcare system easier. We discovered statistically significant differences in the assessment of PHPs' abilities depending on the physicians' specialty, the children's age, the age at ASD diagnosis. Conclusion. The care for autistic patients provided by Polish PHPs is insufficient and the topic needs to be addressed immediately.

4.
Aust J Rural Health ; 2024 Aug 01.
Article in English | MEDLINE | ID: mdl-39087436

ABSTRACT

OBJECTIVE: Rural unpaid caregivers experience different opportunities and challenges than their urban counterparts. Our aim was to understand rural unpaid caregivers' experiences of challenges and opportunities during the Covid-19 pandemic in New Zealand. SETTING: Rural northern New Zealand during the Covid-19 pandemic. PARTICIPANTS: A convenience sample of 10 unpaid rural caregivers, most supporting an older person living with dementia. DESIGN: A qualitative descriptive design. Data included interviews and online workshops, and a thematic analysis. RESULTS: Rural unpaid caregivers observed that some aspects of living in a rural context were helpful during the Covid-19 pandemic. However, tasks such as shopping and long-distance travel and communication (both telephonic and digital) became more complex. Abrupt changes to routine and closure of resources and support groups created challenges. Unpaid caregivers worried about what would happen if they were hospitalised themselves. There was a diversity of experience both across caregivers, of familiar routines and rural context as resources, increased challenges requiring resourcefulness to adapt, and experiences of crisis. Many experienced all three states at different times. CONCLUSION: This research provides valuable insights into challenges and opportunities experienced by rural unpaid caregivers during the Covid-19 pandemic and may help policy-makers and healthcare professionals develop improved emergency preparedness. Multilevel, multisector responses are needed to ensure effective health and social support and access to resources including health care, access to groceries and medication, transport, and communications (telephone and digital). Enhancing rural access to effective and inexpensive online services is particularly important, as is recognition of the value of rural sites or hubs of connection and social interaction.

5.
Cureus ; 16(7): e65896, 2024 Jul.
Article in English | MEDLINE | ID: mdl-39092340

ABSTRACT

The intersection of gerontology and public health is increasingly vital due to the global aging population and its implications for health systems. This scoping review aims to map existing literature on gerontology within public health, identify current perspectives, and evaluate interventions tailored to the needs of older adults. A systematic search was performed using predefined keywords across multiple databases, including PubMed, Google Scholar, Scopus, and Web of Science. The review included 42 studies that employed various designs, all focusing on public health interventions targeting the aging population.  Key findings indicate a pressing need to integrate gerontological principles into public health practice, recognizing the heterogeneous nature of older adults and the significance of social determinants of health. Interventions ranged from preventive health measures and chronic disease management programs to health promotion activities and caregiver support, including the application of technology to improve health outcomes. However, there was a notable lack of research on diverse populations and mental health interventions. The review also uncovered critical gaps in the literature, such as economic barriers to care access and the necessity for comprehensive policies addressing the aging population's diverse needs. In conclusion, this review emphasizes the importance of a multidimensional approach to effectively addressing older adults' health needs. While several effective interventions exist, there is an urgent need to tackle identified gaps, particularly concerning diverse populations and mental health, to enhance overall health strategies for the aging demographic.

6.
Article in English | MEDLINE | ID: mdl-39093932

ABSTRACT

Objectives: To systematically synthesize the current evidence on the effects of art-based interventions on improving anxiety, depression, stress, sleep, and well-being of cancer caregivers. Design: A systematic review. Methods: We searched PubMed, EMBASE, Web of Science, CINAHL, PsycINFO, and Cochrane Central Register of Controlled Trials databases from their inception up to April 2024. Studies exploring the effects of art-based interventions on the psychological symptoms of cancer caregivers were included. We did not restrict the publication to the particular study designs, including randomized controlled trials, quasiexperimental studies, and qualitative studies. Results: Fifteen studies of 607 participants were identified in this systematic review. Overall, the existing studies provided preliminary evidence to suggest that art-based interventions may benefit cancer caregivers in improving anxiety, depression, stress, caregiver burden, and quality of life. However, the relatively low quality of the current evidence limits the efficacy of these findings. Conclusions: According to the existing evidence, the therapeutic benefits of using art-based interventions for improving the psychological well-being of cancer caregivers are uncertain. More high-quality and well-designed studies are still required to confirm the psychological effectiveness of art-based interventions for cancer caregivers in the future.

7.
Orphanet J Rare Dis ; 19(1): 287, 2024 Aug 02.
Article in English | MEDLINE | ID: mdl-39095827

ABSTRACT

BACKGROUND: This study aimed to explore the demographic characteristics, diagnostic challenges, treatment patterns, and caregiver burden of mitochondrial diseases. METHODS: This retrospective cross-sectional study enrolled patients diagnosed with mitochondrial diseases from the Department of Neurology at Peking University First Hospital between January 2010 and December 2021. A questionnaire covering demographic characteristics, diagnostic dilemma, treatment, economic aspects, and caregiver stress was administered, and disability was assessed using the modified Rankin Scale (mRS). RESULTS: A total of 183 patients (mean age: 16 (IQR: 12-25), 49.72% males) were enrolled, including 124 pediatric patients and 59 adult patients. MELAS (106. 57.92%) and Leigh syndrome (37, 20.22%) were predominant among the mitochondrial disease subtypes. Among them, 132 (72.13%) patients were initially misdiagnosed with other diseases, 58 (31.69%) patients visited 2 hospitals before confirmed as mitochondrial disease, and 39 (21.31%) patients visited 3 hospitals before confirmed as mitochondrial disease. Metabolic modifiers were the most common type of drugs used, including several dietary supplements such as L-carnitine (117, 63.93%), Coenzyme Q10 (102, 55.74%), idebenone (82, 44.81%), and vitamins (99, 54.10%) for proper mitochondrial function. Mothers are the primary caregivers for both children (36.29%) and adults (38.98%). The mRS score ranged from 0 to 5, 92.35% of the patients had different degrees of disability due to mitochondrial disease. The average monthly treatment cost was 3000 RMB for children and 3100 RMB for adults. CONCLUSIONS: This study provided valuable insights into the characteristics and challenges of mitochondrial diseases, which underscores the need for improved awareness, diagnostic efficiency, and comprehensive support for patients and caregivers.


Subject(s)
Mitochondrial Diseases , Humans , Cross-Sectional Studies , Retrospective Studies , Mitochondrial Diseases/diagnosis , Male , Female , Adult , Child , Adolescent , Young Adult , Caregivers , Ubiquinone/analogs & derivatives , Ubiquinone/therapeutic use , Caregiver Burden , Surveys and Questionnaires
8.
BMC Palliat Care ; 23(1): 195, 2024 Aug 02.
Article in English | MEDLINE | ID: mdl-39095830

ABSTRACT

BACKGROUND: Family caregivers of terminally ill and dying people do not only experience varying levels but also different dimensions of caregiver-related strain and burden. The aim of the study was to develop a short multidimensional screening tool for the detection of burden in family caregivers in palliative care. METHODS: Family caregivers of cancer patients newly admitted to specialist inpatient palliative care (N = 232) completed questionnaires on psychological burden, quality of life, social support and need fulfillment. A latent class mixture model was used to identify discrete classes of family caregivers related to their multidimensional caregiver burden. Multinomial logistic regression analyses were performed to identify the most predictive items from a set of established questionnaires. RESULTS: Four latent classes of family caregivers were identified: Currently stable caregivers (37%), Caregivers with unmet needs (20%), Psychologically burdened caregivers (30%), and High-risk caregivers (13%). Each of these classes describes a different risk profile of multidimensional family caregiver burden, although family caregivers exhibit high levels of distress across all classes. From a set of 48 items, we identified eight items that predicted the class membership best. These items represent the items of the novel multidimensional screening tool: The 8-item Screening Tool for Family Caregiver Burden in Palliative Care (CAREPAL-8). Except for social support, the items maintained fidelity to the conceptualization of multidimensional caregiver burden used in this study. A preliminary classification system was developed, which has yet to be validated. CONCLUSIONS: This study represents the first step in the establishment of a practical, self-administered screening tool that might help healthcare providers to tailor caregiver care according to their burden in daily practice. Brevity of the 8-item tool might facilitate its use in routine clinical care.


Subject(s)
Caregivers , Palliative Care , Humans , Female , Male , Palliative Care/methods , Palliative Care/standards , Palliative Care/psychology , Middle Aged , Surveys and Questionnaires , Aged , Caregivers/psychology , Adult , Caregiver Burden/psychology , Psychometrics/instrumentation , Psychometrics/methods , Social Support , Mass Screening/methods , Quality of Life/psychology , Aged, 80 and over
9.
Semin Oncol Nurs ; : 151697, 2024 Aug 02.
Article in English | MEDLINE | ID: mdl-39097463

ABSTRACT

OBJECTIVES: Concordance of preferences for end-of-life care regarding patients between patients with advanced cancer and family caregivers can improve the likelihood of honoring dying patients' wishes. However, there is a dearth of knowledge in mainland China. The purpose of this study was to examine patient-family caregiver concordance about patients' life-sustaining treatment preferences and associated factors among patients with advanced cancer in China. METHODS: From September 2019 to December 2021, a convenience sample of 406 dyads of advanced cancer patient-family caregiver were recruited from 2 tertiary hospitals in Wuhan, China. Participants completed a questionnaire about patient's preferences for life-sustaining treatment, respectively. The concordance was assessed by percent agreement and kappa coefficients. Associated factors were identified by univariate analysis and binary logistic regression. RESULTS: The average concordance rate on the preferences for life-sustaining treatment was 56.1%, ranging from 52.9% to 59.3%. Factors associated with a higher level of patient-family caregiver concordance were following: patients who were married, whose educational levels were at college or above, who had not been informed of diagnosis by a physician, who had been informed of the effects and side effects of related drugs by a physician, and who cared for a seriously ill family member or friend and caregivers whose educational level were primary or below. CONCLUSIONS: The patient-family caregiver concordance about patients' life-sustaining treatment preferences among patients with advanced cancer was poor. Patients' and caregivers' understanding of life-sustaining treatment and its efficacy in end-of-life should be facilitated. Relevant conversation should be encouraged between patients and caregivers, thus providing value-concordant end-of-life care for patients with cancer. IMPLICATIONS FOR NURSING PRACTICE: Health professionals need to carry out advanced care planning in oncology departments on mainland China to encourage patients and caregivers to discuss patients' end-of-life care preferences. Facilitating patients' and caregivers' understanding of life-sustaining treatment preferences may help improve the patient-caregiver concordance on life-sustaining treatment preferences among patients with advanced cancer.

10.
Risk Manag Healthc Policy ; 17: 1827-1833, 2024.
Article in English | MEDLINE | ID: mdl-39050089

ABSTRACT

Rapid communication describes the multifaceted impact of the COVID-19 pandemic on three stakeholder groups: family caregivers of COVID-19 patients, frontline health workers attending to COVID-19 patients, and hospital-discharged COVID-19 patients. This communication aims to provide a nuanced understanding of the challenges faced by each group and their experience during the critical period of the pandemic. Three descriptive qualitative studies were conducted between July 2020 and November 2021, using individual in-depth interviews and focus group discussions. Participants were selected purposively. The findings of the three studies were collated in this rapid communication to compare the unique perspectives of the different stakeholders. Thematic analysis led to categories of Varied challenges and family realities, Accepting risks, Support, and Unexpected positive outcomes. These findings emphasise the need for context-specific dissemination of public health messages, particularly in densely populated urban areas. Policymakers are urged to consider the diverse challenges faced by different groups when formulating pandemic response strategies. Overall, this study provides valuable insights into the intricacies of navigating public health crises, fostering a deeper understanding of human connections and resilience during challenging times.

11.
Clin Nutr ; 43(9): 1983-1990, 2024 Jul 18.
Article in English | MEDLINE | ID: mdl-39053325

ABSTRACT

BACKGROUND: Home enteral nutrition (HEN) patients often rely heavily on caregivers (CGs), whose quality of life (QoL) is significantly impacted. This study aimed to identify potentially modifiable factors influencing the QoL of CGs of HEN patients. METHODS: A multicentre, cross-sectional study was conducted in three home nutrition centers from Jan 2021 to Jan 2022. We enrolled 90 CGs of HEN patients, collecting data on QoL (WHOQOL-BREF), depression (Beck Depression Inventory), CG burden (Zarit Burden Interview), sleep quality (Pittsburgh Sleep Quality Index), stress (Perceived Stress Scale), life satisfaction (Satisfaction With Life Scale) and financial status. RESULTS: The mean age of CGs was 54.53 years, with 76% being female. 19% of CGs rated their QoL as poor, and 57% had depression. Multivariate regression analysis showed that financial satisfaction (ß = 0.14, p < 0.01) and depression (ß = -0.03, p < 0.001) were significant predictors of QoL (R2 = 0.6). Depression correlated with CG burden (r = 0.54, p < 0.001), poor sleep quality (r = 0.47, p < 0.001), stress (r = 0.68, p < 0.001), and financial satisfaction (r = -0.39, p = 0.001). The average monthly income per person was $663.3 and 51.2% of CGs were not satisfied with their financial situation. Lower income was correlated with stress (r = -0.298, p = 0.023). CG burden was associated with financial satisfaction (r = -0.373, p < 0.001), quality of sleep (r = 0.296, p = 0.005) depression (r = 0.54, p < 0.001), stress (r = 0.5, p < 0.001) and satisfaction with life (r = -0.389, p < 0.001). CONCLUSIONS: CGs of HEN patients face substantial challenges impacting their QoL, particularly financial stress and depression. Addressing these issues through comprehensive support systems is crucial to improve CG well-being and, subsequently, patient care outcomes.

12.
Occup Ther Int ; 2024: 5921153, 2024.
Article in English | MEDLINE | ID: mdl-39055325

ABSTRACT

Background: Sensory reactivity (SR) difficulties are characterised by problems regulating an individual's responses to sensory input such that it interferes with occupational performance in daily tasks. South African occupational therapists use assessments developed in the United States to identify SR difficulties in children. These have been found to be inappropriate for the South African context. This study reports on the methodology used to adapt an assessment for use in the Western Cape Province of South Africa. Method: The SPM-2 Child and Preschool caregiver self-report questionnaires and seven tests of the performance-based Evaluation in Ayres Sensory Integration (EASI) that assess SR were identified for adaptation. A qualitative methodology was used to identify challenges using the assessment in a sample of the Western Cape population. Cognitive interviews were conducted with six community members from diverse socioeconomic groupings. Inductive analysis was used to identify and group the emerging themes. The test adaptation was conducted by expert occupational therapists based on these findings. Findings: Challenges were grouped into two themes, namely, language challenges, of which there were three subcategories and inappropriate or threatening assessment tasks. Fifty-three changes were made to the assessment. Conclusion: A detailed methodology was developed to adapt a SR assessment for use in the Western Cape Province. Challenges in using the assessment were elicited primarily from community members rather than professionals.


Subject(s)
Occupational Therapy , Humans , South Africa , Occupational Therapy/methods , Child, Preschool , Female , Male , Child , Surveys and Questionnaires , Sensation Disorders/physiopathology , Sensation Disorders/diagnosis , Language , Disability Evaluation
13.
J Am Dent Assoc ; 2024 Jul 17.
Article in English | MEDLINE | ID: mdl-39023483

ABSTRACT

BACKGROUND: In this case-control study, the authors examined the relationship between untreated caries in children and parent fluoride treatment refusal. The authors hypothesized that parents of children with a history of untreated caries would be less likely to refuse topical fluoride for their children than parents of children with no history of untreated caries. METHODS: The study included children (≤ 18 years old) who were patients at a university dental clinic from January 2016 through June 2020. Children whose parents refused fluoride treatment were age-matched with children whose parents did not refuse fluoride treatment (n = 356). The outcome variable was parent topical fluoride refusal for their children (no, yes). The predictor variable was a history of untreated caries (no, yes). Confounding variable-adjusted modified Poisson regression models were used to estimate the prevalence ratio of parent fluoride refusal by means of children's untreated caries status. RESULTS: Approximately 46.3% of children had a history of untreated caries. The prevalence of parent fluoride refusal for children with a history of untreated caries was significantly lower than that for children with no history of untreated caries (adjusted prevalence ratio, 0.79; 95% CI, 0.64 to 0.98; P = .03). CONCLUSIONS: Parents of children with a history of caries are less likely to refuse topical fluoride treatment, which suggests that untreated caries may motivate parents to accept preventive dental treatments like fluoride. PRACTICAL IMPLICATIONS: Dental care professionals should assess caries risk and communicate a child's caries risk before making a recommendation regarding topical fluoride treatment.

14.
Front Psychiatry ; 15: 1450368, 2024.
Article in English | MEDLINE | ID: mdl-39041048
15.
Front Psychiatry ; 15: 1417514, 2024.
Article in English | MEDLINE | ID: mdl-39041047

ABSTRACT

Introduction: Given that mental illness stigma is a common occurrence amongst people with mental illness and caregivers (CGs) can be a potential victim of stigma themselves, there is a need to examine caregivers' perspective on the phenomenon. This study is part of a larger study which aims to qualitatively examine the concept of mental illness stigma amongst different stakeholders in Singapore. Methods: Focus group discussions (FGDs) were conducted amongst 21 informal caregivers to explore the experience of stigma encountered by them and their care recipients, and how it may implicate their caregiving experience. Both inductive and deductive thematic analyses were employed to analyze the data. Results: Three overarching themes of stigma encounters that may have implication on caregiving experience were identified: 1) Stigma within the family; 2) Structural stigma; and 3) Stigma by association. Experience of stigma within family (e.g., social exclusion and lack of understanding) limits the caregiving supports available to CGs. CGs also took up a mediating role between their care recipients and other family who may hold stigmatizing views. Witnessing their care recipients being subjected to structural disadvantages (e.g., employment, school, and mandatory conscription) can induce emotional stresses amongst CGs and motivate them to protest and seek redress on their behalf. Furthermore, encounters of stigma themselves (e.g., being judged or blamed for their loved one's condition) also led to feelings of guilt and self-blame amongst the CGs. Discussion: These findings can aid the formulation of interventions in informing CGs on what to expect on their caregiving journey and supporting them in dealing with issues relating to stigma and highlight the importance of anti-stigma efforts in organizational settings such as schools, corporations, and government agencies.

16.
J Women Aging ; : 1-20, 2024 Jul 23.
Article in English | MEDLINE | ID: mdl-39042558

ABSTRACT

Research has shown significant differences and inequalities in the health of women and men who care for older dependent family members, with women having poorer health and suffering more from overload. Women internalize a cultural model of caregiving involving social norms whereby caring becomes a central dimension of gender-female identity, cutting across other aspects of life. This study takes a biopsychosocial approach, understanding gender as a determinant of health, in order to investigate the processes of subjectivation (and "technologies of the self") that mediate between the social organization of care and the health of women. A reflexive thematic analysis was undertaken in this qualitative study, following in-depth interviews with nineteen women caring for family members. The results show that women's biopsychosocial health is affected by the subjective positions they adopt in order to submit to or resist gender-based social norms about caring in three dimensions: their relationship to their own health problems, their experience of vulnerability, and the place of love and morality in relation to being a caregiver. Those (inter)subjective processes reflect the neoliberal update of the gendered social organization of care and the way its social discourses, such as free choice and unstinting performance, relate to female caregivers' biopsychosocial health. It is necessary to deconstruct this traditional model and the self-regulated processes as recast by the neoliberal order for the sake of women's health, to relieve them of this burden. It is essential to commit to sociopolitical articulations aimed at shared responsibility in care.

17.
J Healthc Qual Res ; 2024 Jul 22.
Article in English | MEDLINE | ID: mdl-39043525

ABSTRACT

PURPOSE: To determine whether there are differences in care experience of adolescent cancer patients and their main caregiver, treated in Adolescent Cancer Units (ACUs), compared to those treated in Non-Adolescent Cancer Units (NACUs), including the COVID-19 pandemic period. METHOD: Measurement of Reported Experience in adolescent oncology patients (12-19 years old) and caregivers through ad hoc surveys. The responses of the study group of patients and caregivers treated in Adolescent Units were compared with the group not treated in them. RESULTS: It is noted that many respondents consider that they have not been affected by the COVID-19 pandemic. Significant differences were seen in communication, with better perception by the group of patients treated in ACU (87.1%) and caregivers of ACU (97.3%) compared to patients and caregivers of NACU (53.3% and 68.2% respectively). Regarding information received about the side effects, a better perception was observed among patients treated in the ACU than in the NACU (p=0.247). In the transmission of information and the possibility of fertility preservation, a significant difference was observed in favour of ACU in patients and direct caregivers (p=0.010 and p=0.018). CONCLUSIONS: ACU represents an improvement in the quality perceived by patients and main caregiver on key points in the comprehensive care of the adolescent with cancer such as information, participation in the process and decision making, approach to side effects, psychological care and help in returning to normal life. However, fertility and strategies for talking about the cancer experience, were identified as areas for future improvement.

18.
Article in English | MEDLINE | ID: mdl-39030716

ABSTRACT

INTRODUCTION: Long-term care (LTC) refers to care and support services that are required by individuals who lack the ability to perform important daily routines and may be dependent on others for personal, social, and medical needs over a sustained period of time. LTC may be broadly categorized into formal and informal care, where formal care is provided by professionals who are compensated to provide these services and informal care captures the care services provided without compensation by family members, friends, or other unpaid individuals. AREAS COVERED: In this narrative review, we identify and synthesize evidence to evaluate the cost of long-term care while balancing the needs of caregivers. We searched Embase and EconLit for studies published from 2010 to November 2023. Our search strategy used a combination of keywords such as 'long-term care,' 'caregiver burden,' 'caregiver support,' 'cost of care,' and 'caregiver wellbeing.' We include both formal and informal LTC, as well as predictors of caregiver wellbeing. EXPERT COMMENTARY: This review highlights the global variability in LTC costs and the significant burden on caregivers, emphasizing the need for policy interventions and comprehensive insurance schemes. Future research should focus on standardized assessment tools, intervention effectiveness, and integrating caregiver support into healthcare models, ensuring holistic and sustainable LTC solutions.

19.
Article in English | MEDLINE | ID: mdl-39046825

ABSTRACT

Integrative medicine and palliative care are philosophically similar, with a focus on whole person care and wellbeing. Integrative medicine provides a large toolbox of evidence-informed treatment modalities but doesn't prioritize the care of seriously ill people. Palliative care takes a holistic approach to reducing the suffering of seriously ill people, their families, and their caregivers, but the available treatment toolbox is often limited to pharmaceuticals, procedures, and radiation. The ideal care of families facing serious illness employs the philosophy and conventional expertise of palliative care clinicians coupled with an evidence-supported expanded treatment toolbox provided by the field of complementary and integrative medicine. This emerging field is called integrative palliative care. Reducing physical, emotional, and spiritual suffering is the fundamental goal of palliative care and all available effective tools should be employed toward this aim. Therefore, all palliative care should be integrative palliative care.

20.
BMC Public Health ; 24(1): 1977, 2024 Jul 24.
Article in English | MEDLINE | ID: mdl-39049013

ABSTRACT

BACKGROUND: Caregiver self-efficacy is crucial in improving patient outcomes and caregiver well-being, but there is a lack of suitable scales to assess this concept within the context of Chinese culture. This study aimed to cross-culturally translate the Caregiver Self-Efficacy in Contributing to Patient Self-Care (CSE-CSC) Scale and evaluate its psychometric properties using classical test theory and item response theory. METHODS: The CSE-CSC scale was adapted using Brislin's translation model after obtaining authorization from the original author. A multicenter, cross-sectional study was conducted to assess the psychometric properties of this scale. Classical test theory was used to evaluate reliability (internal consistency, test-retest reliability), validity (content validity, structural validity, convergent validity), and floor and ceiling effects. Item response theory was employed to assess the fit of the rating scale model, reliability, item difficulties, and measurement invariance. RESULTS: The translation and cultural adaptation process was completed. Classical test theory demonstrated good internal consistency (Cronbach's α = 0.935) and test-retest reliability (ICC from 0.784 to 0.829, p<0.001). The I-CVI and K* of each item ranged from 0.875 to 1.00 and 0.871 to 1.00. The first-order 2-factor model fit well (χ2/df = 3.71, RMSEA = 0.082, SRMR = 0.032, CFI = 0.973, TLI = 0.60). Convergent validity showed that the CSE-CSC scores had a strong positive correlation with three separate scales of the CC-SC-CII. There was no floor and ceiling effect in this scale. Rasch analysis showed that the CSE-CSC scale demonstrated a good fit to the rating scale model and exhibited excellent reliability (person/item separation index>2, person/item reliability coefficients>0.8). The Wright map showed that item difficulty matched the respondents' measured abilities. The analysis of differential item functioning (DIF) showed that all items were comparable in gender. CONCLUSIONS: This study indicated that the CSE-CSC scale had good reliability, validity, difficulty degree, and measurement invariance. The CSE-CSC scale can be used to measure caregiver self-efficacy of Chinese patients with multiple chronic conditions.


Subject(s)
Caregivers , Psychometrics , Self Care , Self Efficacy , Humans , China , Caregivers/psychology , Female , Male , Cross-Sectional Studies , Middle Aged , Self Care/psychology , Reproducibility of Results , Adult , Surveys and Questionnaires/standards , Translations , Cross-Cultural Comparison , Aged
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