Physical Activity, Sedentary Behaviour, Sleep and Mental Wellbeing in Family Caregivers of Adults With Intellectual and/or Developmental Disabilities.

BACKGROUND: Canadian 24-h movement guidelines recommend that adults achieve 150 min per week of moderate-to-vigorous physical activity (MVPA), 7-9 h of sleep per night and spend no more than 8-h per day sedentary to optimise health and wellbeing. METHOD: Using a cross-sectional survey of 131 family caregivers of adults with intellectual and developmental disabilities, we aimed to (a) determine whether adherence to these guidelines predicts mental wellbeing in family caregivers and (b) explore the relationship between movement behaviours of family caregivers and their loved ones. RESULTS: While MVPA was found to weakly predict wellbeing, sleep and sedentary behaviour did not. The movement behaviours of the family caregivers were not closely related to that of their loved ones. CONCLUSIONS: Fostering physical activity is important to promote the wellbeing of adults with intellectual and developmental disabilities, as well as their family caregivers. Opportunities to be active together may be even more beneficial.

Experiences and Perceptions of Medication Management Communication During Transitions of Care for Residents in Aged Care Homes and Their Caregivers: A Qualitative Meta-Synthesis.

AIM: To explore the experiences and perceptions of communication about managing medication across transitions of care for residents living in aged care homes and their family caregivers. BACKGROUND: Effective medication communication across transitions of care involves exchanging information, resident, and family caregiver's participation in decision-making, and shared responsibility. DESIGN: A qualitative meta-synthesis. METHOD: This review was conducted in accordance with the PRISMA 2020 guidelines and the accompanying 27-item checklist. A systematic search of seven electronic databases (Embase, PsycINFO, Medline Ovid, Scopus, CINAHL, EmCare and Web of Science) was performed from inception to December 2023. Studies eligible for inclusion in this review were required to be published in peer-reviewed English journals and focus on medication communication among healthcare providers, residents and family caregivers during transitions of care for aged care residents. The JBI Critical Appraisal Checklist for Qualitative Research was employed for the critical appraisal of the studies, and the COREQ checklist was used to evaluate their quality. RESULTS: Of the 2610 studies identified, 12 met the inclusion criteria. No study was excluded based on quality. Two main themes were generated: (1) Medication information exchange involving residents and families, and (2) resident and family factors influencing medication communication engagement. The findings revealed a lack of supportive structure for effective communication and collaboration among residents, family caregivers and healthcare providers during transitions of care, marked by one-way interactions and limited evidence of shared decision-making or family caregiver engagement in medication management communication, despite varying individual needs and preferences. CONCLUSIONS: Communication about medication management during transitions of care focused on sharing details rather than active engagement. Residents and their family caregivers have individual needs and perspectives regarding communication about medication management, which are not well addressed by healthcare providers during transitions of care. Healthcare providers' communication remains limited, and family caregivers are underutilised.

A Qualitative Descriptive Study Exploring the Systemic Challenges of Caring for Children With Medical Complexity at Home.

INTRODUCTION: The purpose of this study is to explore challenges within the home care system encountered by parental caregivers of children with medical complexity in Massachusetts. METHOD: A qualitative descriptive study was completed with 11 parental caregivers interviewed. RESULTS: Using conventional content analysis of transcripts, three themes emerged: (1) lack of discharge preparedness causes emotional distress, (2) care becomes increasingly complex creating new unanticipated challenges, and (3) psychological toll of parents assuming provider role. DISCUSSION: Navigating a variety of complex systemic challenges with minimal preparation or support contributes to an overall feeling of parental caregiver burnout. Additionally, mental health supports for parental caregivers are lacking, further exacerbating the negative impact of these challenges. Future work should focus on research, advocacy, and system reform that ensures parental caregivers receive necessary supports to care for children within a sustainable and supportive home care model. Nurses across the profession are in unique position to facilitate this change.

Exploring Stakeholder Perspectives on the Implementation of WHO iSupport for Dementia Program: A Qualitative Study.

AIM: To explore the stakeholders' perspectives and develop a conceptual framework for promotion strategies to implement the iSupport-based intervention for family caregivers of people with dementia. DESIGN: A descriptive qualitative design was adopted. METHODS: Semi-structured interviews were conducted with 49 stakeholders of people with dementia from July to December 2023. The Consolidated Framework for Implementation Research was applied to guide the development of the interview guide, data collection and analysis. Directed content analysis was employed to identify facilitators and barriers, with data analysed based on the framework and the established its codebook. These findings were then summarised into a conceptual framework of critical components. RESULTS: The identified 16 barriers and 28 facilitators were distributed across all Consolidated Framework for Implementation Research domains. All facilitators and barriers were integrated into a conceptual framework guiding the implementation of iSupport. This four-tier, eight-component conceptual framework guides the global promotion of the web-based dementia care model, covering state, society, hospitals, individuals and strategies. The components included comprehensive and balanced national medical guidelines, a friendly social culture, adequate hospital collaboration, cooperative healthcare workers, responsible family caregivers, a comprehensive intervention system, appropriate learning content and digital health support. CONCLUSION: The 'iSupport for Dementia' program is seen positively for its potential to improve dementia care by providing mental and technical support to family caregivers. Successful implementation requires addressing barriers, enhancing facilitators and adapting to China's conditions and policies. Mobilising local healthcare resources and gaining stakeholder recognition is crucial. This approach may help develop a localised version of iSupport that suits the needs and habits of Chinese family caregivers, with the potential for broader dissemination. IMPACT: The 'iSupport for Dementia' program could greatly improve dementia care in China by addressing barriers and utilising facilitators. This study offers critical insights for future policy development and effective implementation strategies. REPORTING METHOD: Adherence to the COREQ guidelines for reporting qualitative research was maintained. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Efficacy of a Telephone-Intervention on Caregiving Burden and Mental Health among Family Caregivers of Persons with Dementia in Malaysia: A Randomized Controlled Trial.

Identifying effective and accessible interventions for family caregivers of persons with dementia (PWD) is crucial as the prevalence of dementia increases in Asia. This study investigated the efficacy of a telephone-intervention on the reduction in caregiver burden, as well as depressive and anxiety symptoms among family caregivers (FCs) of PWD in Malaysia. A single-blinded randomized controlled trial was carried out with 121 FCs of PWD selected from memory or psychiatry clinics in three tertiary hospitals in Malaysia, who were randomly allocated into the intervention or control group. The intervention group received the psychoeducational intervention delivered by healthcare staff via telephone for 10 sessions over 12 weeks. The outcome of the intervention was measured by the Malay version of the Zarit Burden Interview and the Hospital Anxiety and Depression Scale at baseline and post-intervention. An intention to treat analysis shows that caregiver burden, anxiety symptoms, and psychological distress among FCs in the intervention group decreased by 7.57 units (p < 0.001), 2.46 units (p < 0.001), and 2.98 units (p = 0.011), respectively, at post-intervention, compared to the differences from baseline to post-intervention in the control group. Policies aimed at integrating the telephone-intervention into memory/psychiatry clinics in Malaysia may help FCs of PWD to reduce their caregiver burden and stress while caring for a family member with dementia.

Recommendations for psychosocial support for long-distance caregivers of terminally ill patients.

CONTEXT: The provision of appropriate psychosocial support has a significant impact on quality of life for informal caregivers of terminally ill patients. Long-distance caregivers have specific wishes and needs for psychosocial support. OBJECTIVES: To date, no formal support measures for long-distance caregivers of terminally ill patients have been developed in Germany. The national Delphi study aimed at systematically and empirically generating recommendations for psychosocial support measures, tailored to this population. METHODS: Recommendations were formulated on the basis of qualitative interviews exploring the support experiences and unmet needs of long-distance caregivers of terminally ill patients. Experts from hospice and palliative care rated the relevance and feasibility of 10 recommendations using two 4-point Likert-type scales. Additionally, suggestions for improvement were captured via free text fields. Recommendations were deemed to have achieved consensus when ≥ 80% of participants indicated "strongly agree" or "somewhat agree" for both relevance and feasibility. RESULTS: A total of 26 experts completed two Delphi rounds. Following the first round, 8 of the 10 recommendations were revised according to participant feedback. After the second round, consensus was achieved for 5 of these revised recommendations. Three recommendations were rejected, as participants regarded them unfeasible due to a perceived lack of personnel resources. CONCLUSION: The consensus-based recommendations represent the first empirically grounded guidelines in Germany aimed at addressing the psychosocial needs of long-distance caregivers of terminally ill patients. The recommendations seek to raise awareness among both professional and voluntary workers regarding the specific support requirements of this understudied population.

Effectiveness of meaning-centered interventions on existential distress and mental health outcomes in cancer survivors and their family caregivers: A systematic review and meta-analysis of randomized controlled trials.

BACKGROUND: Cancer is a global public health concern that causes psychosocial and spiritual challenges in those who suffer from it and their family caregivers. Meaning-centered interventions have a positive impact on improving anxiety and depression in patients with advanced cancer. However, the impact of meaning-centered interventions on existential distress of patients with cancer and family caregivers' mental health is still unclear. AIMS: To examine the efficacy of meaning-centered interventions in alleviating existential distress, enhancing quality of life, and fostering a sense of meaning among cancer survivors and their family caregivers. METHODS: This systematic review and meta-analysis were conducted according to the Preferred Reporting Item for Systematic Reviews and Meta-analysis 2020 statement. A comprehensive search was conducted from inception until September 2023 across nine databases: PubMed, Embase, Web of Science, PsycINFO, The Cochrane Library, CINAHL, Scopus, WANFANG, and CNKI. Heterogeneity testing and meta-analyses were conducted using Review Manger 5.3. We calculated standard mean deviations and 95% confidence intervals and presented forest plots for assessing intervention effects. Two reviewers independently evaluated the risk of bias of all included articles. STATA 17.0 was used for publication bias analysis. RESULTS: The review included 25 studies with 2399 participants, and 22 were included in the meta-analysis. Meaning-centered interventions enhanced quality of life, alleviated existential distress, and reduced depressive symptoms and cancer-related fatigue. They did not affect spiritual well-being. The subgroup analysis showed that the individual form and long-term intervention (≥3 months) enhanced the quality of life in cancer survivors. Meaning-centered interventions reduce depression in advanced cancer survivors more than in mixed-stage cancer survivors. Meaning-centered interventions significantly enhanced benefit finding for family caregivers. LINKING EVIDENCE TO ACTION: Meaning-centered interventions may improve mental health for patients with cancer and their family caregivers. Future research must include diverse cultural perspectives to understand the impact of meaning-centered interventions on various groups.

Exploring Health Care Professionals' Perspectives on the Use of a Medication and Care Support System and Recommendations for Designing a Similar Tool for Family Caregivers: Interview Study Among Health Care Professionals.

BACKGROUND: With the aging population on the rise, the demand for effective health care solutions to address adverse drug events is becoming increasingly urgent. Telemedicine has emerged as a promising solution for strengthening health care delivery in home care settings and mitigating drug errors. Due to the indispensable role of family caregivers in daily patient care, integrating digital health tools has the potential to streamline medication management processes and enhance the overall quality of patient care. OBJECTIVE: This study aims to explore health care professionals' perspectives on the use of a medication and care support system (MCSS) and collect recommendations for designing a similar tool for family caregivers. METHODS: Fifteen interviews with health care professionals in a home care center were conducted. Thematic analysis was used, and 5 key themes highlighting the importance of using the MCSS tool to improve medication management in home care were identified. RESULTS: All participants emphasized the necessity of direct communication between health care professionals and family caregivers and stated that family caregivers need comprehensive information about medication administration, patient conditions, and symptoms. Furthermore, the health care professionals recommended features and functions customized for family caregivers. CONCLUSIONS: This study underscored the importance of clear communication between health care professionals and family caregivers and the provision of comprehensive instructions to promote safe medication practices. By equipping family caregivers with essential information via a tool similar to the MCSS, a proactive approach to preventing errors and improving outcomes is advocated.

Effect of a single-session mindfulness-based intervention for reducing stress in family caregivers of people with dementia: study protocol for a randomized controlled trial.

BACKGROUND: Caregiver stress can pose serious health and psychological concerns, highlighting the importance of timely interventions for family caregivers of people with dementia. Single-session mindfulness-based interventions could be a promising yet under-researched approach to enhancing their mental well-being within their unpredictable, time-constrained contexts. This trial will evaluate the effectiveness and feasibility of a blended mindfulness-based intervention consisting of a single session and app-based follow-up in reducing caregiver stress. METHODS/DESIGN: The study is a single-blinded randomized controlled trial with two arms (intervention versus an education session on dementia care) and assessments at baseline, 8 weeks, and 6 months. The eligibility criteria include: family caregivers aged 18 years or older; providing care for an individual with a confirmed medical diagnosis of dementia for at least 3 months prior to recruitment, with a minimum of 4 hours of daily contact; and exhibiting a high level of caregiver stress. The intervention comprises a 90-minute group-based session with various mindfulness practices and psychoeducation. Participants will receive a self-practice toolkit to guide their practice over a duration of 8 weeks. Sharing activities will be implemented through an online social media platform. The primary outcome is perceived caregiving stress. The secondary outcomes include depressive symptoms, positive aspects of caregiving, dyadic relationship, trait mindfulness, and neuropsychiatric symptoms of care recipients. The feasibility outcomes include eligibility and enrollment, attendance, adherence to self-practice, and retention, assessed using mixed methods. DISCUSSION: The study will contribute to the evidence base by investigating whether a single-session mindfulness intervention is effective and feasible for reducing caregiver stress among family caregivers of people with dementia. TRIAL REGISTRATION: ClinicalTrials.gov, NCT06346223. Registered on April 3, 2024.

Challenges for Family Caregivers of Persons With Mild Cognitive Impairment: A Qualitative Longitudinal Study.

Family caregivers of persons with mild cognitive impairment attempt to understand the behavioural and functional changes exhibited by their relative. However, how caregivers respond to initial changes and changes over time has not been explored. The purpose of this qualitative study was to explore the experience of family caregivers responding to changes in their relative's memory, behaviours, and physical functions over 2 years. Eleven family caregivers of a relative with mild cognitive impairment were purposively recruited from neurological clinics in Taiwan. Face-to-face semi-structured interviews were conducted within 6-months of referral; three follow-ups were conducted at 6-month intervals. Content analysis of 41 transcribed audio-recorded interviews revealed the longitudinal changes in their relative with cognitive impairment was made caregiving challenging. Three themes described the challenges: (1) Changes related to their relative's cognitive impairment, which included increases in mood fluctuations, erratic behaviours, and reductions in physical abilities; (2) changes in their relative's comorbidities, which included adapting to new symptoms and treatments for a chronic disease, monitoring medication adherence and drug interactions; and (3) changes in caregiver burden, which increased levels of stress, uncertainty, and anxiety resulting in greater role strain. Caregiving became more challenging with time, especially caregivers whose relative developed dementia during the study period. These findings offer insight into the trajectory of the experience of family caregivers attempting to understand changes in cognition, behaviours, and physical functions for their relative with mild cognitive impairment over 2 years, which could help mental healthcare providers develop support services to reduce caregiver role strain.

Design and psychometrics of the family caregivers burnout inventory of older adults with chronic disease.

Background: Identifying the hidden and pervasive phenomenon of burnout among family caregivers of older adults with chronic disease requires the use of a valid and reliable tool tailored to the cultural structure of the target community. Therefore, the present study aimed to design and psychometrically evaluate the family caregivers burnout inventory (FCBI) of older adults with chronic disease. Methods: This research is a sequential exploratory mixed-methods study focused on instrument design, conducted in Iran in 2024. The study employed classical theory, involving three stages to create a valid instrument: item design using inductive (semi-structured face-to-face interviews with 13 caregivers) and deductive (literature review) methods, tool design, and tool evaluation using face validity, content validity, construct validity [exploratory factor analysis (EFA) (N = 297) and confirmatory factor analysis (297 participants)], convergent validity, and reliability (internal consistency and stability). Data were analyzed using AMOS version 24 and SPSS version 26. Results: Based on qualitative findings, participant quotes, and item adoption from other studies, a pool of 228 items was designed using a 5-point Likert scale (always to never). After several stages of review by the research team, 102 items remained. Following face validity (2 items), content validity (46 items), and construct validity (23 items due to factor loadings less than 0.4 and cross-loadings), 71 items were eliminated, leaving 31 items. EFA results indicated that the family caregiver's burnout construct of older adults with chronic diseases comprises six factors include; "neurosis," "feeling victimized," "extreme fatigue and helplessness," "neglect or abuse of self and others," "adaptation deficiency" and "emotional separation" explaining 52.93% of the total variance. The fit indices showed acceptable model fit with the data. In this study, composite reliability and average variance extracted (AVE) for the six factors were greater than 0.7 and 0.5, respectively, and the (AVE) for each factor was higher than the composite reliability. Cronbach's alpha coefficient for the entire scale was 0.975, and there was a significant correlation between test and retest scores (p < 0.001). Conclusion: FCBI demonstrates suitable validity and reliability and can be used in various settings by health service providers to identify symptoms of burnout in family caregivers.

Resilience and coping styles in family caregivers of terminally ill patients: A cross-sectional survey.

OBJECTIVES: 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. METHODS: 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. RESULTS: 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. SIGNIFICANCE OF RESULTS: 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.

Randomized Trial to Evaluate Effects of Peer- and Clinician-Led Interventions for Caregivers of Individuals With Acquired Brain Injury.

Objective: To evaluate the effectiveness of 2 interventions for caregivers of patients with acquired brain injury (ABI) transitioning home after inpatient rehabilitation, to prepare them for the role of caregiving and reduce stress and depression. Design: Controlled trial with participants randomly assigned to (1) usual care (UC), (2) clinician-delivered Problem-Solving Training (PST), or (3) peer-led Building Better Caregivers (BBC) training; both experimental interventions initiated during the inpatient rehabilitation stay, delivered virtually, of similar intensity (six 60-minute sessions), and focused on managing stress and building skills related to caregiving. Setting: Nonprofit rehabilitation hospital specializing in care of persons with acquired brain and spinal cord injuries. Participants: Caregivers (n=169) of patients with ABI (54 stroke; 115 other ABI) admitted for rehabilitation whose discharge location was home with care provided by family members (caregivers: 83% women, 62% White, age [mean ± SD]: 51±11.5 y). Participants were recruited from February 2021 to November 2022, when COVID-19 restrictions were in place. Interventions: Noted above. Main Outcome Measures: Caregiver-reported stress, depressive symptoms, and caregiving self-efficacy; patient unplanned hospital readmissions and emergency department visits 30 days post discharge. Results: Only 61% of participants in the 2 intervention groups completed 3 or more of 6 intervention sessions and only 53% completed all data collection surveys. Statistically significant improvements between UC and PST groups were noted for caregiver stress (p=.039). Positive differences in caregiver self-efficacy found between UC and the BBC intervention groups approached significance at 30 days after discharge (p=.054). Patient unplanned hospital readmissions and days hospitalized were also higher, albeit not statistically significant, for UC participants than both intervention groups. Conclusions: Although positive findings were noted, results were negatively affected by study limitations including low enrollment and limited engagement (intervention completion and follow-up outcomes assessment). These limitations resulted, in part, from restrictions put into place during the COVID-19 pandemic, which limited contact with study participants and required alterations to the BBC intervention likely influencing its effectiveness. Despite limitations noted, the encouraging findings suggest the need for further research.

Utilizing intricate care networks: An ethnography of patients and families navigating palliative care in a resource-limited setting.

BACKGROUND: The increase in non-communicable disease burdens and aging populations has led to a rise in the need for palliative care across settings. In resource-limited settings such as Indonesia, however, notably in rural areas, there is a lack of professional palliative care. Little is known about specific palliative care navigation, as previous studies have mostly focused on cancer care navigation. A locally tailored approach is crucial. AIM: To explore how patients and families navigate palliative care and the problems they experience. DESIGN: An ethnographic study using in-depth interviews and observations, analyzed using reflexive thematic analysis. SETTING/PARTICIPANTS: Interviews with 49 participants (patients, family caregivers, and health professionals) and 12 patient-family unit observations in Banyumas, Indonesia. THE ANALYSIS: Patients and families navigated palliative care through different strategies: (1) helping themselves, (2) utilizing complementary and alternative medicine, (3) avoiding discussing psychological issues, (4) mobilizing a compassionate and advocating community, and (5) seeking spiritual care through religious practices. CONCLUSIONS: Our participants used intricate care networks despite limited resources in navigating palliative care. Several problems were rooted in barriers in the healthcare system and a lack of palliative care awareness among the general public. Local primary health centers could be potential palliative care leaders by building upon pre-existing programs and involving community health volunteers. Cultivating a shared philosophy within the community could strengthen care collaboration and support.

Internet usage buffers the effect of loneliness on subjective health among informal caregivers of older adults.

Informal caregivers of older adults usually suffer from loneliness, which makes them vulnerable to reduced health outcomes. This study attempted to explore whether internet usage mitigates the effects of loneliness on subjective health among informal caregivers of older adults. A sample of 1089 informal caregivers (mean age = 58.0 ± 15.7 years, 60.3% females) providing unpaid cares for older adults in the United States were investigated. Their loneliness, subjective health, and utilization of caregiving-related online resources were measured. Descriptive statistics and correlation analyses were conducted to summarize the sample's characteristics and determine the relationships among the study variables, respectively. Finally, a multivariate regression analysis with an interaction term was performed to test the moderating effect of internet usage. Results indicated that loneliness was significantly negatively associated with subjective health. Furthermore, after controlling for demographic and caregiving-related factors, the moderating effect of internet usage on the link between loneliness and subjective health was significant, namely, the negative association between loneliness and subjective health was less pronounced at higher levels of internet usage. Hence, in addition to alleviating loneliness, providing caregiving-related online services and promoting positive utilization of resources on the internet may be potential intervention targets to improve informal caregivers' health.

What individual needs do family caregivers have in palliative home care and how are they supported? A qualitative study of a supportive intervention.

PURPOSE: Family caregivers (FCGs) play a pivotal role in supporting patients in palliative care at home. Person-centred support is crucial to prevent negative outcomes; therefore, evidence-based approaches such as the Carer Support Needs Assessment Tool Intervention (CSNAT-I) are promising. To understand more about the delivery of the intervention, the study focuses on documentation of CSNAT-I in practice in Austria to identify which support needs were discussed with the FCGs and the types of support delivered to meet these needs. METHODS: A retrospective analysis of electronic records was conducted, focusing on documented entries related to the delivery of CSNAT-I over a 21-month period (Dec 2019 to Aug 2021). Both qualitative and quantitative methods were employed for data analysis. RESULTS: The analysis identified a wide spectrum of FCG support needs, categorised into enabling domains related to caregiving for the patient and direct support needs concerning FCGs' own health and well-being. The most frequently documented support needs included 'having time for oneself in the day' and 'dealing with feelings and worries', highlighting the challenges FCGs face in balancing caregiving responsibilities with personal life. Supportive input encompassed advice and information, counselling, education and training, coordination and arrangement, and signposting and referral. CONCLUSION: The study stresses the importance of addressing both practical and psychosocial aspects of caregiving, utilising a person-centred approach. Nurses provided comprehensive support mostly directly delivered during their contact with FCGs. CSNAT-I demonstrated flexibility, accommodating the diverse needs of FCGs in different situations, and may contribute to a more supportive care environment.

Family caregivers of children with cystic fibrosis: supportive care needs - scoping review.

BACKGROUND: Cystic fibrosis (CF) in children requires complex and time-consuming daily care, presenting significant challenges for families and caregivers. Family caregivers caring for children with CF report diverse and complex needs. OBJECTIVE: This review aimed to identify the supportive care needs of family caregivers of children with CF. REVIEW METHODS: This scoping review was conducted to identify the supportive care needs of family caregivers for children with CF using the methodology proposed by Arksey and O'Malley. The Preferred Reporting Items for Systematic review and Meta-Analysis extension for Scoping Reviews checklist was used as a guide. The inclusion criteria included full-text quantitative and qualitative English articles from January 2000 to Apr 2024. DATA SOURCES: Structured searches were conducted using Magiran, MEDLINE (PubMed), Scopus, ScienceDirect, SID (Science Information Database), Web of Science and Google Scholar search engines. FINDINGS: A search across six databases, including Magiran (96), PubMed (680), Scopus (828), ScienceDirect (972), SID (Science Information Database) (47) and Web of Science (409), identified 3032 records. An additional 1185 related articles were found through a manual search of the reference lists and the Google Scholar search engine bringing the total to 4217. Out of 4217 initial articles, 21 eligible articles were reviewed. The findings from this study indicated that family caregivers of children with CF face multidimensional needs requiring comprehensive attention and support including educational/informational, psychological/emotional, spiritual, social, family-related, health and child development and growth needs. CONCLUSION: Addressing the needs of family caregivers of children with CF requires a multidimensional approach including multidisciplinary team support across various domains.

The Importance of Honoring Family Caregiver Burden: Challenges in Mental Health Care Delivery.

There is growing recognition of the profound mental health challenges faced by the 53 million U.S. family caregivers, and the need for increased access to psychosocial care for this vulnerable population. Family caregivers are increasingly seeking support from hospital-based counseling centers. This trend-combined with a public policy landscape that promotes the delivery of caregiver-specific supports and services-highlights challenges faced by mental health professionals to provide and bill for psychosocial care to family caregivers. In this paper, we discuss three interrelated challenges that mental health professionals face in providing care to family caregivers and which our field needs to confront as healthcare transfers more responsibilities onto the shoulders of family caregivers: (1) caregiver burden is not recognized as a formal diagnosis; (2) current documentation for caregivers is typically linked to patient encounters; and (3) support for family caregivers occurs within larger systematic barriers to mental health integration. By accurately describing and documenting caregiver burden and advocating for increased parity in mental health coverage, we hope that the field can bridge the gap between emerging research, momentum in policy, and available psychosocial services for this vulnerable population.

Factors associated with caregiver burden among family members of persons with schizophrenia in urban communities of China.

OBJECTIVE: Family caregivers bear a heavy burden while providing care for those with schizophrenia, and they frequently play an important role in this regard. The present study examined the degree of caregiver burden and characteristics related to it among family caregivers of persons with schizophrenia in Chinese urban settings. METHODS: Between August 2023 and June 2024, a cross-sectional study was conducted of 401 family caregivers of persons with schizophrenia living in metropolitan settings. The following measures were administered: the Zarit Burden interview (ZBI), General Self-Efficacy Scale (GSES), Social Support Rating Scale (SSRS), and Simplified Coping Style Questionnaire (SCSQ). Linear regression analyses were used to identify independent correlates of caregiver burden. RESULTS: Family caregivers of persons with schizophrenia had an average ZBI score of 32.90(SD = 17.53) on a 0-88 scale, with the majority (80.0%) reporting moderate caregiver burden (scores of 21-39). The person with schizophrenia's marital status (not married), impulsive or aggressive conduct in the previous year, the caregiver's physical health (poor), and not having multiple caregivers were all independent correlates of caregiver burden. CONCLUSIONS: Family caregivers of persons with schizophrenia experience a moderate level of caregiver burden. To lessen the psychological suffering of and strain on caregivers, it is important to intervene early on impulsive and aggressive conduct of persons with schizophrenia, effectively treat physical health problems of caregivers, and strengthen the social support system or otherwise provide assistance to those caring for persons with schizophrenia.