Caregivers Of Survivors Research Articles

Exploring Caregiving Burden and Family Resilience Among Caregivers of Young and Middle-Aged Stroke Survivors in China

Background: Stroke, characterized by high morbidity, disability, and mortality, has increasingly affected younger populations. In China, the proportion of strokes among individuals aged 40-64 has risen significantly. This study explored the caregiving burden and family resilience among caregivers of young and middle-aged first-stroke survivors, comparing caregivers of those with good versus poor functional outcomes. Methods: A cross-sectional survey was conducted from January to June 2024, involving 119 family caregivers of stroke survivors from two tertiary hospitals in Yancheng City, Jiangsu Province, China. Data were collected using the Modified Rankin Scale (mRS), Zarit Burden Interview (ZBI), and the Family Resilience Assessment Scale (FRAS-C). Independent t-tests and Pearson's correlation analysis were performed to examine differences in care burden and family resilience between caregiver groups. Results: Caregivers had an average ZBI score of 28.32±20.66, with 39.5% reporting no or minimal burden, 29.4% light burden, and 25.2% moderate burden. Caregivers of patients with mRS 0-2 had significantly lower care burdens (23.84 vs. 37.17, p<0.01) and higher family resilience (98.22 vs. 93.00, p<0.05) compared to those with mRS 3-5. Care burden was negatively correlated with family resilience (r=-0.243, p=0.008). Conclusion: Caregivers of young and middle-aged stroke survivors generally experienced mild to moderate care burden, while family resilience was moderate. Caregivers of survivors with better functional outcomes had lower care burdens and higher family resilience. These findings highlight the need for targeted interventions to support caregivers of survivors with poorer functional outcomes to enhance family resilience and reduce care burden.

Addressing caregiver needs of brain injury survivors through telehealth: A pilot qualitative study

AbstractObjectiveThis study sought to identify effective means for delivering services to address the unique needs of caregivers for traumatic brain injury (TBI) survivors.BackgroundCaregivers for TBI survivors face unique and intense challenges, including deep isolation. When these caregivers fail to thrive, the entire family system suffers.MethodEmploying a pilot study utilizing qualitative methods, we explored the effectiveness of an intervention piloting telehealth counseling to address some of the unique caregiving challenges for the TBI survivor's caregiver. We conducted two focus groups of four participants to obtain qualitative data.ResultsQualitative analysis identified key themes: isolation, boundary issues, challenges of therapy, and the benefits of telehealth counseling.ConclusionsResults indicate an improvement in overall functioning of caregivers when accessing telehealth services.ImplicationsOn a micro level, results demonstrate that telehealth services can help TBI caregivers prevent boundary enmeshment. On a macro level, results have implications for increased investment and resources for those who serve the TBI population through an online format as well as proposed best practices for the method of service delivery.

Effectiveness of a smartphone-enabled dyadic self-care programme (SDSCP) for stroke survivors and caregivers: study protocol for a randomised controlled trial

IntroductionThe promotion of self-care has begun to serve as a central response strategy to the rising burden of stroke. In fact, stroke self-care can be recognised to be a dyad...

Challenges That Vhavenḓa Child Victims of Sexual Abuse Endure as a Result of Delayed Disclosure

While child sexual abuse (CSA) has been declared a public health concern worldwide, the continuous problem is the delayed disclosure that affects child victims in many ways. It poses profound health, psychological and social challenges for child victims. This qualitative study explored and described the challenges that Vhavenḓa child victims of CSA endure as a result of delayed disclosure. Five adult survivors of CSA, seven caregivers of survivors of CSA, four social workers, two educators and two traditional leaders were purposefully selected to participate in the study. Data was collected through semi-structured interviews and thereafter it was arranged and analysed thematically with the assistance of the NVivo software. Findings reveal that, due to the emotional implications of the abuse, the Vhavenḓa child victims of sexual abuse endure a number of behavioural, social and academic challenges that tremendously affect their well-being, even in their adulthood. It is therefore recommended that vigorous awareness campaigns on CSA within the Vhavenḓa communities be conducted to mitigate the delayed disclosure of sexual abuse.

Feasibility of a meditation intervention for stroke survivors and informal caregivers: a randomized controlled trial

BackgroundDepressive symptoms are a significant psychological complication of stroke, impacting both survivors and informal caregivers of survivors. Randomized controlled trials are needed to determine optimal non-pharmacological strategies to prevent or ameliorate depressive symptoms in stroke survivors and their informal caregivers.MethodsA prospective, randomized, parallel-group, single-center, feasibility study. Participants were assigned to a 4-week meditation intervention or expressive writing control group. The intervention comprised four facilitator-led group meditation sessions, one session per week and building upon prior session(s). Descriptive statistics were used to examine the proportion of eligible individuals who enrolled, retention and adherence rates, and the proportion of questionnaires completed. Data were collected at baseline, immediately after the 4-week intervention period, and 4 and 8 weeks after the intervention period. Secondary analysis tested for changes in symptoms of depression (Center for Epidemiologic Studies-Depression [CES-D]), anxiety [State-Trait Anxiety Inventory for Adults (STAI)], and pain (Brief Pain Inventory-Short Form) in the intervention group via paired t tests. Linear mixed models were used to compare longitudinal changes in the measures between the groups. Intervention and trial design acceptability were preliminary explored.ResultsSeventy-one (77%) individuals enrolled and 26 (37%) completed the study (baseline and 8-week post-intervention visits completed). Forty-two (66%) participants completed baseline and immediate post-intervention visits. Mean questionnaire completion rate was 95%. The median meditation group session attendance rate for the intervention group was 75.0%, and the mean attendance rate was 55%. Non-significant reductions in CES-D scores were found. Paired t tests for stroke survivors indicated a significant reduction from baseline through week 8 in BPI-sf severity scores (p = 0.0270). Repeated measures analysis with linear mixed models for informal caregivers indicated a significant reduction in in STAI-Trait scores (F [3,16.2] = 3.28, p = 0.0479) and paired t test showed a significant reduction from baseline to week 4 in STAI-Trait scores (mean = − 9.1250, 95% CI [− 16.8060 to 1.4440], p = 0.0262). No between-group differences were found.ConclusionsFuture trials will require strategies to optimize retention and adherence before definitive efficacy testing of the meditation intervention.Trial registration: ClinicalTrials.gov Identifier: NCT03239132. Registration date: 03/08/2017

Actor–partner effects of wellbeing, hope and self-esteem on depression in stroke survivor–caregiver dyads: A randomized controlled trial

Background Stroke is a disabling, long-term condition that challenges the mental and physical health of stroke-survivors concurrently with their primary family-caregivers (dyad). However, there has been a lack of emphasis on this dyadic need. Thus, this study aims to investigate the impacts of two interventions on hope, self-esteem and hedonic wellbeing on depression among the stroke-survivor–caregiver dyad. Methods This randomized-controlled-trial applied the actor–partner interdependence model to 100 randomly-selected dyads (N = 200) of stroke-survivors, mean (SD) age was 73.63(7.22) and family-caregivers, mean (SD) age was 62.49(14.44) years, recruited from Hong Kong hospitals and rehabilitation centres. The intervention was eight-weekly two-hour narrative therapy group sessions (n = 54 dyads), compared with the current model of psychoeducational group to each dyad as needed. Outcomes were collected via questionnaires and interviews, at four time-points: baseline (T1), during-intervention (T2) (1-month), immediately post-intervention (T3) (2-months) and follow-up (T4) (6-months). Results The results demonstrated that there are actor effects on stroke-survivors (β = −0.353, p < 0.05) and caregivers (β = −0.383, p < 0.05), where higher levels of hedonic wellbeing were associated with fewer depressive symptoms. Partner effects were observed as caregivers’ depressive symptoms were possessing a significant negative relationship with stroke survivors’ wellbeing (β = −0.387, p < 0.05). Those stroke survivors in the intervention group had a significantly higher level of self-esteem associated with lower levels of depression (β = −0.314, p < 0.05). Conclusions Improving hope, self-esteem and wellbeing through narrative therapy significantly mediates depressive symptoms, strengthening the dyadic support of stroke survivors and family caregivers.

Effects of a social participation-focused virtual reality intervention for community-dwelling stroke survivors with physical disabilities: a randomised controlled trial protocol

IntroductionStudies show that stroke survivors encounter physical and psychological limitations that restrict their participation in social and community activities. Systematic reviews have yielded inconclusive evidence regarding the effectiveness of different...

Depression among underserved rural and urban caregivers of Latinas with breast cancer

ABSTRACT Among Latino/as, informal caregiving duties are often deemed a family responsibility. Understanding psychological outcomes tied to caregivers of Latina breast cancer survivors is important to identify the impacts of cancer. Secondary analysis of baseline data collected in a randomized clinical trial (RCT) from 230 Latina breast cancer survivor–caregiver dyads. Characteristics of caregivers residing in rural/underserved and urban areas were compared using t- or chi-square tests. General linear models were used to analyze depressive symptoms in relation to residence, survivor–caregiver relationship, acculturation, obligation, reciprocity, and comorbidities. Urban residence was significantly associated with higher levels of depression controlling for survivor–caregiver relationship acculturation, obligation, reciprocity, and comorbidities. Mother caregivers had significantly higher levels of depression than other caregivers. Depression among Latino/a caregiver’s providing care to an adult child is an important consideration as Latino/as are less likely to seek out/have access to mental health services than other groups.

Factors impacting the access and use of formal health and social services by caregivers of stroke survivors: an interpretive description study

BackgroundEvidence has shown that family and friend caregivers of stroke survivors are significantly and negatively impacted by caregiving. The negative effects of caregiving may persist over time suggesting that caregivers might benefit from ongoing engagement with supportive services. However, little is known about caregivers’ use of formally funded health and social services, or the factors influencing their access to and use of these services. The aim of this study is to increase understanding of the factors that influence stroke caregivers’ access and use of formal health and social services, from the perspective of stroke caregivers and healthcare providers.MethodsA qualitative study was conducted with stroke caregivers and health providers in Ontario, Canada using interpretive description. In-depth interviews were conducted with caregivers of survivors who experienced a stroke between six months to five years previous and healthcare providers who support caregivers and stroke survivors. All participants provided written informed consent. Interview data were analyzed using constant comparison to identify codes and develop key thematic constructs.ResultsA total of 40 interviews were conducted with 22 stroke caregivers at an average 30-months post-stroke and 18 health providers. Factors that influenced stroke caregivers’ access and use of services included: finances and transportation; challenges caregivers faced in caring for their health; trust that they could leave their family member and trust in health providers; limited information pertaining to services and a lack of suitable services; and the response of their social networks to their caregiving situation.ConclusionStroke caregivers experience significant challenges in accessing and using formal health and social services. These challenges could be addressed by increasing availability of subsidized community-based supports such as respite and counselling tailored to meet the ongoing needs of caregivers. Systemic change is needed by the health system that readily includes and supports caregivers throughout the stroke recovery continuum, particularly in the community setting.

Emotional distress in neuro-ICU survivor-caregiver dyads: The recovering together randomized clinical trial.

Emotional distress is common in both survivors and their informal caregivers following admission to a neuroscience intensive care unit (Neuro-ICU) and can negatively affect their individual recovery and quality of life. Neuro-ICU survivor-caregiver dyads can influence each other's emotional distress over time, but whether such influence emerges during dyadic treatment remains unknown. The present study involved secondary data analysis of Neuro-ICU dyads enrolled in a randomized clinical trial of a dyadic resiliency intervention, Recovering Together (RT), versus a health education attention placebo control to test dyadic similarities in emotional distress before and after treatment. Data were collected from 58 dyads following Neuro-ICU admission. Emotional distress (depression, anxiety, and posttraumatic stress) was assessed at baseline, 6 weeks (postintervention), and 12 weeks later. Nonindependence within survivor-caregiver dyads was examined (i.e., correlations between cross-sectional symptoms and changes in symptoms over time); mutual influence of emotional functioning over time (i.e., "partner effects") was examined using cross-lagged path analyses. There were strong, positive cross-sectional correlations between survivor and caregiver distress at postintervention and follow-up and between changes in survivor and caregiver distress from baseline to postintervention and postintervention to follow-up. There were no partner effects. Neuro-ICU survivors and their informal caregivers show similar changes in emotional distress after treatment. These findings highlight the potential benefits of intervening on both survivor and caregiver distress following Neuro-ICU admission. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Self-care interventions in stroke survivor–caregiver dyads: a protocol for systematic review and meta-analysis

IntroductionStroke is known as one of the leading causes of mortality and disability worldwide. Self-care plays a significant role in improving the quality of life, self-efficacy and many other outcomes...

Supplemental Material for Emotional Distress in Neuro-ICU Survivor–Caregiver Dyads: The Recovering Together Randomized Clinical Trial

Supplemental Material for Emotional Distress in Neuro-ICU Survivor–Caregiver Dyads: The Recovering Together Randomized Clinical Trial

Engaging Those Living With Moderate to Severe TBI and Their Caregivers in Research.

Despite the fact that millions of individuals living in the United States are coping with disabilities associated with traumatic brain injury (TBI), limited work has explored strategies for patient engagement in research among those with such injuries. The Coalition for Recovery and Innovation in Traumatic Brain Injury Care Across the Lifespan (CRITICAL) brought together those living with TBI, caregivers, clinicians, researchers, and advocates with the goal of developing a new patient-centered research agenda. This platform was also used to explore strategies to engage those with moderate to severe TBI in the research process. The CRITICAL was formed of 6 survivors of moderate to severe TBI, 2 caregivers of survivors of moderate to severe TBI, and 8 TBI professionals. The CRITICAL identified 3 priority topic areas: Relationship Quality, Caregiver Needs, and Thriving. Furthermore, strategies associated with Communication, Preparation, and the Environment facilitated research engagement. Employing the strategies outlined in this article is expected to promote patient engagement in clinical research, which can improve patient-centered interventions and outcomes for individuals living with TBI.

Feasibility of the Hand in Hand Relationship Intervention for Stroke Survivor–Caregiver Dyads: A Randomized Trial

Purpose: A strong interpersonal relationship after stroke is important for the prevention of depression in survivors and family caregivers. This study aimed to test the feasibility of quality of relationship intervention for stroke dyads called Hand in Hand (HiH). Methods: Sixteen dyads were randomized into either the HiH group ( n = 8) or information, support, and referral (ISR) control group ( n = 8). HiH dyads received up to eight sessions, with topics prioritized according to a 17-item screening tool. ISR dyads received up to eight sessions that included information, active listening, and referrals. Feasibility, acceptability, and outcomes data were collected for both groups. Results: The HiH and ISR groups were feasible and acceptable. Caregivers in both groups, as well as survivors in the ISR group, experienced improvements in depressive symptoms and other select outcomes. Conclusions: Findings suggest that HiH is feasible to implement with stroke dyads and that it merits further refinement and testing.

Moderator Role of Mutuality on the Association Between Depression and Quality of Life in Stroke Survivor-Caregiver Dyads.

Authors of previous research have not yet analyzed the role of potential moderators in the relationship between depressive symptoms and quality of life (QOL). The aim of this study was to examine the moderating effect of mutuality between depressive symptoms and QOL in stroke survivor and caregiver dyads. This study used a longitudinal design with 222 stroke survivor-caregiver dyads enrolled at survivor discharge from rehabilitation hospitals. Data collection was performed for 12 months. We examined survivor and caregiver QOL dimensions (physical, psychological, social, and environmental), depression, and mutuality at baseline and every 3 months. Hierarchical linear modeling was used to test 4 longitudinal dyadic moderation models (1 for each QOL domain). Survivors (50% male) and caregivers (65% female) were 70.8 (SD, 11.9) and 52.5 (SD, 13.1) years old, respectively. We observed no significant moderating effects of mutuality for survivors across the 4 dimensions of QOL over time. However, higher survivor mutuality was significantly associated with higher survivor psychological and social QOL at baseline. Regarding caregivers, caregiver mutuality significantly moderated the association between caregiver depressive symptoms and caregiver physical (B = 0.63, P < .05), psychological (B = 0.63, P < .01), and social (B = 0.95, P < .001) QOL at baseline, but not in environmental QOL. Higher caregiver mutuality was significantly associated with less improvement in caregiver physical QOL over time. Mutuality is a positive variable on the association between depression and QOL for both members of the dyad at discharge but may lead to declines in physical health for caregivers over time. Further work is needed to understand the role of mutuality on long-term outcomes and associations with increased care strain.

Effectiveness of dyadic interventions to improve stroke patient-caregiver dyads' outcomes after discharge: A systematic review and meta-analysis study.

Because of the importance of a dyadic approach, it is necessary to conduct a systematic review to identify which dyadic intervention could be implemented for stroke survivor-caregiver dyads after discharge from the rehabilitation hospital to improve outcomes. The aims were to systematically review the evidence to identify which dyadic interventions have been implemented in stroke survivor-caregiver dyads to improve stroke survivor-caregiver dyads' outcomes and to analyse, through a meta-analysis, which intervention was found to be the most effective. A systematic review and meta-analysis were conducted using the following electronic databases: PubMed, CINAHL and PsycInfo. Randomized controlled trials (RCTs) and quasi-RCT studies published within the last 10 years were included. Quantitative data were extracted from papers included in the review using the standardized data extraction tool from JBI-MAStARI. Pooled effects were analysed between the experimental and control groups for each outcome. Sixteen studies involving 2997 stroke survivors (male gender=58%) and 2187 caregivers (male gender=25%) were included in this review. In 16 studies, which were subdivided into three quasi-RCTs and 13 RCTs, the application of dyadic interventions for stroke survivors and caregivers was systematically reviewed, but only a few of these identified a significant improvement in the stroke survivors' and caregivers' outcomes of its intervention group. Dyadic interventions showed a significant effect on stroke survivors' physical functioning (p=0.05), memory (p<0.01) and quality of life (p=0.01) and on caregivers' depression (p=0.05). This study provides moderate support for the use of a dyadic intervention to improve stroke survivors' physical functioning, memory and quality of life and caregiver depression.

Does self-awareness influence caregiver burden?

Caregiver burden is experienced by a significant number of caregivers of survivors of acquired brain injury (ABI). It is known that self-awareness can impact functioning following ABI. However, the impact of self-awareness on caregiver burden has not been established. To investigate the relationship between self-awareness and caregiver burden following ABI. We studied 57 patient-caregiver pairs up to 28 years post-discharge from a post-acute comprehensive holistic milieu-oriented neurorehabilitation program. The Mayo-Portland Adaptability Inventory-4 (MPAI-4) was completed by survivors of ABI and their caregivers. Discrepancies in reports between survivors of ABI and their caregivers were used to determine self-awareness. Additionally, caregivers completed the Zarit Burden Interview (ZBI). Survivors of ABI with impaired self-awareness reported significantly higher levels of functioning than survivors of ABI with unimpaired self-awareness (p < 0.001). Unimpaired self-awareness (p < 0.001) and lower survivor self-reported MPAI-4 Total Score (p < 0.001) significantly predicted caregiver burden. Survivors of ABI's level of functioning and their level of self-awareness significantly impacted caregiver burden. Survivors of ABI with impaired self-awareness not only lack insight into their functional abilities but also tend to overestimate their capabilities; this likely contributes to the need for greater levels of supervision and worsened caregiver burden.

The Relationship Between Health-Related Quality of Life and Saliva C-Reactive Protein and Diurnal Cortisol Rhythm in Latina Breast Cancer Survivors and Their Informal Caregivers: A Pilot Study.

Introduction: To date, no study has explored associations between objective stress-related biomarkers (i.e., inflammatory markers, diurnal rhythm of cortisol) and health-related quality of life (HRQOL) in Latina breast cancer survivors and their informal caregivers (i.e., family, friends). Method: This cross-sectional feasibility study assessed saliva C-reactive protein, saliva diurnal cortisol rhythm (cortisol slope), and self-reported HRQOL (psychological, physical, and social domains) in 22 Latina survivor-caregiver dyads. Feasibility was defined as ≥85% samples collected over 2 days (on waking, in afternoon, and in evening). Associations between biomarkers and HRQOL were examined with correlational analyses. Results: Collection of saliva was feasible. Strongest associations were observed between survivor evening cortisol (as well as cortisol slope) and fatigue, a component of physical HRQOL. Discussion: Associations presented may help promote investigations of mechanisms linking stress-related biomarkers and HRQOL in Latina breast cancer survivor-caregiver dyads, which will facilitate development of culturally congruent interventions for this underserved group.

Spirituality and resilience among family caregivers of survivors of stroke: A scoping review

Stroke is the leading cause of disability in Australia and the third-leading cause of disability worldwide and a significant burden on caregivers. To map the extent, range and nature of the literature investigating spirituality and resilience among family caregivers of survivors of stroke. A scoping review. Six studies were identified, conducted in the United States, United Kingdom, China and Turkey. These included two quantitative, one experimental and three qualitative designs. No studies linked spirituality to resilience. For the qualitative studies, spirituality was the primary focus of one, and the secondary focus of two others. Qualitative data reflected the lived experience of caregivers drawing upon spirituality to help cope with the burden of caregiving. For the two quantitative studies, spirituality was measured as a secondary focus and showed no significant links between spirituality or adjustment in caregivers. The one experimental study comprised a psycho-educational intervention focused on building resilience, finding a significant increase in social support not reflected in a matched control group. Clinical implications suggested the need for strength-based interventions, including spiritual needs and religious beliefs of the family caregiver. Spirituality and resilience following stroke are essential factors in caregiver adjustment following stroke. Further research with a focus on causality and the link between spirituality, resilience and adjustment in this population is needed.

Influenza vaccination in caregivers of childhood cancer survivors.

An increased risk of influenza-related morbidity and mortality in childhood cancer survivors could be significantly reduced through vaccinations. This study aimed to examine influenza vaccination practices by caregivers of childhood cancer survivors. Study subjects were 364 caregivers, recruited at three major hospitals in South Korea. We collected demographic and medical information through self-administered questionnaires, along with clinical information of childhood cancer survivors by reviewing medical records. Multiple logistic regression analysis was performed to analyze factors associated with influenza vaccination of caregivers. A total of 55.2% of caregivers had received influenza vaccination at least once and 24.2% had received yearly influenza vaccinations during the last 3 years. Caregivers with highest education level were more likely to receive influenza vaccination than caregivers with lowest education level: aOR (95% CI) was 3.42 (1.17, 9.99) for ever-receipt of vaccination and 3.33 (1.15, 9.58) for yearly vaccination. One-year increase in caregiver age was inversely associated with ever-receipt of vaccination (aOR (95% CI), 0.94 (0.90, 0.98)) as well as yearly vaccination (aOR (95% CI), 0.92 (0.88, 0.97)). Increasing time lapse since the end of treatment was also associated with lower vaccinations. Influenza vaccination rates of childhood cancer survivor caregivers were suboptimal. Time lapse after completing cancer treatment, caregiver age, and educational level were independently associated with receipt of influenza vaccination by caregivers. To promote influenza vaccination in caregivers of childhood cancer survivors to prevent influenza-related morbidity and mortality in childhood cancer survivors is necessary.