Negative Caregiving Experiences Research Articles

Caregiving Experiences as Mediators Between Caregiving Stressors and Anticipatory Grief in Severe Dementia: Findings From Longitudinal Path Analysis

ObjectivesFamily caregivers of older adults with severe dementia often experience anticipatory grief. We aimed to investigate the temporal association of caregiving stressors (older adults’ behavioral symptoms, and caregiver-older adult co-residence and emotional closeness) and caregivers’ anticipatory grief, and its mediation by positive and negative caregiving experiences. DesignProspective cohort. SettingSingapore. ParticipantsAbout 169 family caregivers of older adults with severe dementia were surveyed every 4 months for 4 years (up to 13 surveys). MeasurementsWe measured anticipatory grief using the Marwit Meuser Caregiver Grief Inventory-Short Form, negative caregiving experiences using the Caregiver Reaction Assessment scale, positive caregiving experiences using Gain in Alzheimer Care Instrument and behavioral symptoms using the Cohen-Mansfield Agitation Inventory. We implemented a cross-lagged panel model to test mediation, a form of longitudinal path analysis. ResultsAbout 35% of the caregivers reported high anticipatory grief at least once during the study period. Older adults’ behavioral symptoms had a significant direct effect (Standardized coefficient [95% confidence interval]: 0.12 [0.04, 0.21]) on caregivers’ anticipatory grief. Negative experiences mediated the significant indirect effect of older adults’ behavioral symptoms (0.16 [0.06, 0.25]) and coresidence (0.16 [0.07, 0.25]) on caregivers’ anticipatory grief. Positive caregiving experiences did not mediate any path. ConclusionsFindings indicate a temporal association between caregiving stressors and anticipatory grief, mediated by negative caregiving experiences. Routine screening for anticipatory grief, and interventions to address caregiver stressors and negative caregiving experiences may alleviate caregivers’ grief.

Putting a Dollar Value on Informal Care Time Provided to People Living With Dementia: A Discrete Choice Experiment

ObjectivesInformal care represents a significant cost driver in dementia but monetizing informal care hours to inform cost-of-illness or economic evaluation studies remains a challenge. This study aimed to use a discrete choice experiment to estimate the value of informal care time provided to people with dementia in Australia accounting for positive and negative impacts of caregiving. MethodsAttributes and levels were derived from a literature review, interviews with carers, and advice received from an advisory group. Attributes included 4 positive and negative caregiving experiences, in addition to “hours of care provided” and the “monetary compensation from the government.” A D-efficient design was constructed with 2 generic alternatives that represented hypothetical informal caregiving situations. The discrete choice experiment survey was administered online to a representative sample of the Australian general population and a group of informal carers of people with dementia. The willingness to accept estimates were calculated for the 2 samples separately using the mixed logit model in the willingness to pay space. ResultsBased on 700 respondents included in the analysis (n = 488 general public, n = 212 informal carers), the mean willingness to accept for an additional hour of informal care, corrected for the positive and negative impacts of informal care, was $21 (95% CI 18-23) for the general public and $20 (95% CI 16-25) for the informal carers sample. ConclusionThe estimates generated in this study can be used to inform future cost-of-illness studies and economic evaluations, ensuring that informal care time is considered in future policy and funding decisions.

Changes in Psychosocial Variables Among Caregivers of Patients With Schizophrenia: A Short-Term Follow-Up Study.

Caring for a person with schizophrenia entails considerable effort. The caregiving experience while caring for a person with schizophrenia has been described as both stressful and enriching. The literature on changes in caregiving experience with time has been fairly limited. The present analysis looks at the change in the caregiving experience of caregivers of patients with schizophrenia. This study had a sample of 50 caregivers of patients with schizophrenia who were followed up after a period of 6 to 10 months. Caregiving experience, knowledge of the mental illness, family functioning, coping, social support, psychological distress, quality of life, and spiritual, religious, and personal beliefs were assessed at the two time points. Among the negative caregiving experiences, caregivers' needfor back-upand patient dependency reduced significantly at follow-up as compared to baseline, though total negative or positive experiences of caregiving did not show a significant difference. Knowledge about mental illness did not significantly increase at follow-up, though issues related to poor communication and affective involvement in family functioning reduced over the period of time. Coping and social support remained largely the same, while psychological distress was reduced. All domains of quality of life improved over the follow-up period, while the hope, optimism, and inner peace aspects of spiritual, religious, and personal beliefs improved with time. Some aspects of caregiving experiences may change with time. As caregivers become more adjusted to caregiving roles, their distress may reduce, and their quality of life may improve.

Trajectories of negative and positive experiences of caregiving for older adults with severe dementia: application of group-based multi-trajectory modelling.

Family caregivers of older adults with severe dementia have negative and positive experiences over the course of caregiving. We aimed to delineate joint trajectories (patterns over time) for negative and positive experiences, identify risk factors associated with membership of joint trajectories, and ascertain the association between joint trajectories and caregivers' outcomes after the death of the older adult. Two hundred fifteen family caregivers of older adults with severe dementia in Singapore were surveyed every 4 months for 2 years, and 6 months after the death of the older adult. Using group-based multi trajectory modelling, we delineated joint trajectories for positive (Gain in Alzheimer Care Instrument) and negative (sub-scales of modified Caregiver Reaction Assessment) experiences of caregiving. We identified four joint trajectories - "very high positive, low negative" (23% of caregivers), "high positive, moderate negative" (28%), "very high positive, moderate negative" (28%), and "high positive, high negative" (21%). Caregivers of older adults with more behavioural symptoms, and who did not receive strong emotional support from family were more likely to have "high positive, moderate negative" or "very high positive, moderate negative" trajectory. Compared to caregivers with "very high positive, low negative" trajectory, caregivers with "very high positive, moderate negative" or "high positive, high negative" trajectories expressed greater grief and distress, with the latter also having lower spiritual well-being and quality of life at 6 months after the death of the older adult. The caregiving experiences for older adults with severe dementia vary between caregivers but remain stable over time. Modifiable risk factors identified for trajectories involving negative experiences of caregiving may be targeted in future interventions to improve the experience of caregiving and caregiver quality of life and distress after the death of the older adult. http://www. gov (NCT03382223).

Perspectives of Minority Ethnic Caregivers of People with Dementia Interviewed as Part of the IDEAL Programme

Postwar migrants from the Caribbean and Indian subcontinent (Bangladesh, India, and Pakistan) to the UK are now experiencing the onset of age‐related diseases such as dementia. Our evidence base, both quantitative and qualitative, documenting the experiences of family caregivers of people with dementia is largely drawn from studies undertaken with white European, North American, and Australasian populations. Consequently, there is a need for research in the field of dementia caregiving to reflect the increasing diversity in ethnic identities of the older adult population of the UK. Using semistructured interviews, we investigated the experiences of 18 caregivers of people with dementia in Black Caribbean, Black African, and South Asian (Indian, Pakistani, and Bangladeshi) communities in England. Participants were recruited from the Join Dementia Research platform and were predominantly female intergenerational carers. We identified the following three themes: motivation to care (spending time with the care recipient and reciprocity), positive and negative consequences of caregiving (rewards and consequences), and the cultural context of caregiving (cultural norms and values supporting caregiving and negative attitudes towards dementia). Our findings develop existing literature by identifying (a) the importance of spending time with the person they care for, (b) the absence of faith as a caregiving driver, and (c) the challenge of watching the declining health of a parent. We highlight how the different motivations to care are intertwined and dynamic. This is illustrated by the linking of obligation and reciprocity in our dataset and positive and negative experiences of caregiving.

EFFECT OF A COVID-19-RELATED LOCKDOWN ON MIDDLE-AGED AND OLDER FAMILY CAREGIVERS IN SINGAPORE

Abstract Lockdowns, while limiting COVID-19 transmission, can affect care provision by family caregivers and their caregiving experience. We assessed, among 1094 family caregivers aged 50-79 years in Singapore, the (1) perceived effect of nationwide lockdown on their care provision, (2) correlates of different perceptions, and (3) association of the perceptions with negative and positive caregiving experiences. Caregivers reported whether their care provision became harder, easier, or remained the same during versus before the lockdown. Multinomial logistic regression assessed the association of caregiver, care-recipient, and caregiving-context characteristics with their perceptions. Linear regression models examined the association of their perceptions with subsequent negative and positive caregiving experiences. Care provision became harder for 36%, easier for 18% and remained the same for 46% caregivers. Care provision becoming harder (versus same) was more likely for caregivers who were male, Chinese, in worse health, caring for care-recipients with functional limitations, without caregiving support from cohabiting family before the lockdown, and with caregiving support from non-cohabiting family before the lockdown. Care provision becoming easier (versus same) was less likely among caregivers who were of higher age, unemployed, socially isolated and whose care-recipients had functional limitations. Caregivers for whom care provision became harder were worse off in negative caregiving experiences. A nationwide lockdown did not make care provision harder for all caregivers. However, those for whom it did had greater negative caregiving experiences. Heterogeneity of the effect of lockdowns and offering flexibility to non-cohabiting family who support caregiving should be considerations when implementing such disruptions.

THE “GOOD” CAREGIVER: DOES FILIAL PIETY NECESSITATE SELF-SACRIFICE?

Abstract Family caregiving policies that amplify the enactment of ‘filial piety’ – respect and care towards parents, grandparents and older persons – are especially pronounced in Asian societies, where caring for older family members is culturally expected and appraised yet is associated with stress and burden. Numerous studies have shown that fulfilment of filial piety contributes to better psychological outcomes for caregivers while mismatched filial expectations contribute to poorer psychological outcomes. However, few studies acknowledge how filial care varies according to individual resources and socio-cultural contexts. We seek to understand how family caregivers negotiate their self-determination through filial care, which contributes to positive and negative caregiving experiences. We conducted in-depth interviews with 34 caregivers of older persons with functional limitations in Singapore, purposefully selected based on varying positive and negative caregiving experiences. For caregivers with predominantly negative caregiving experiences, filial care was seen as an act of sacrifice and expectation of duty, with low autonomy to exercise self-determination. In comparison, caregivers with predominantly positive caregiving experiences described filial care as an act of sincere love cultivated through close relationships with their care-recipient, and aligned to their self-determination. Strong family support was also evident in the latter. Treating filial piety as a ‘natural desire to care for parents’ obscures efforts required to amplify positive caregiving experiences while normalisation of self-sacrifice and suffering hinders caregivers from expressing burden and accessing support. A nuanced understanding of how caregivers negotiate filial care can inform policy interventions to empower caregivers and care-recipients and enhance intergenerational relationships.

노인을 돌보는 가족돌봄자의 돌봄부담-디스트레스 관계에서 가족관계망의 감사와 지원의 효과

The purpose of this study was to examine the relationship between caregiver burden and distress among caregivers of older adults and to identify the family gratitude and family support that moderate the relationship between caregiver burden and distress. Caregiver burden was assessed based on the amount of total caregiving time (per week), the gap between the amount of actual and desired caregiving time, and the negative caregiving experiences. Family characteristics were analyzed based on social support theory and social recognition theory to investigate whether family gratitude and economic support from family members moderate the caregiver burden-stress relationship. The analysis was conducted on 501 primary caregivers for older adults from the 2018 National Survey of Family Caregiving. The results of this study are as follows: First, when controlling for other characteristics, family caregivers who reported more negative caregiving experiences (e.g. demanding care, constant surveillance, interference from others) experienced higher levels of distress when their actual caregiving time exceeded their preferred caregiving time. Secondly, primary caregivers who perceived gratitude from their families appeared lower levels of distress. Moreover, the interaction effect between caregiving time gap and acknowledgment was significant, indicating that the recognition of gratitude from family members is meaningful in moderating the distress of primary caregivers in stressful situations. Thirdly, the interaction effect between negative caregiving experiences and economic support was also significant, suggesting that the intensity of distress caused by negative caregiving experiences can be reduced through the financial support provided by family members.

Impact of a COVID-19-Related Lockdown on the Experience of Informal Caregiving in Singapore

Introduction: Lockdowns, while limiting COVID-19 transmission, can affect provision of care by informal caregivers and their caregiving experience. We assessed, among informal caregivers in Singapore, (a) the perceived impact of a 2-month (April to May 2020) nationwide lockdown on their care provision, (b) correlates of different perceptions of the impact of the lockdown on care provision, and (c) association of different perceptions of the impact with negative and positive experiences of caregiving. Methods: In the August 2020 wave of the Singapore Life Panel (SLP; nationally representative, longitudinal monthly survey of Singapore citizens and permanent residents aged 50–70 years at baseline), 1,094 participants identified as informal caregivers reported whether their care provision became easier, remained the same, or became harder during the lockdown, compared to before the lockdown. We used multinomial logistic regression to assess the association of caregiver, care recipient, and caregiving context characteristics with their perceptions. Linear regression models examined the association of their perceptions with negative and positive experience domains of the modified Caregiver Reaction Assessment. Results: Just over one-third (36.1%) of the informal caregivers reported that their care provision became harder during the lockdown compared to before the lockdown. However, nearly one-fifth (18.0%) said that it became easier, and the rest (45.9%) said that it remained the same. Care provision was more likely to be perceived as having become harder among caregivers who were male, of Chinese ethnicity, in worse health, whose care recipients had functional limitations, who did not have caregiving support from cohabiting family members before the lockdown, and who had caregiving support from non-cohabiting family members before the lockdown. The perception that care provision became easier was less likely among caregivers who were of higher age, were unemployed, were socially isolated, and whose care recipients had functional limitations. Caregivers who perceived that care provision became harder during the lockdown were worse-off in negative experiences of caregiving. Conclusion: A nationwide lockdown did not make care provision harder for all informal caregivers. However, informal caregivers for whom it did were more likely to have greater negative experiences of caregiving. The heterogeneity of the impact of lockdowns and the possibility of offering flexibility to non-cohabiting family members who support caregiving should be important considerations when planning for such disruptions.

A Profile of Positive and Negative Caregiving Experiences Among Canadian Older Adults: The Relevance of Demographic and Care Contexts.

This study examines the predictors of burdens and benefits of informal caregiving to caregivers by examining how demographic characteristics and care contexts simultaneously predict separate scales of positive and negative caregiving experiences. The Caregiving, Aging, and Financial Experiences study is a national survey which examines a representative sample of 4010 Canadians between the ages of 65 and 85, including 1641 informal caregivers that are the focus of the current analysis. Seemingly unrelated regression analyses show that there are similarities as well as differences in predictors between the two caregiving experiences. More frequent involvement in caregiving is associated with greater negative caregiving experiences but those are not significant predictors for less positive caregiving experiences. This study demonstrates that there are some overlaps of determinants of the two caregiving experiences, and a few of them are distinct. Further studies should warrant to identify additional, unobserved factors explaining variance in positive caregiving experience.

Factors associated with grief in informal carers of people living with Motor Neuron Disease: A mixed methods systematic review

The purpose of this mixed methods systematic review was to identify factors associated with anticipatory grief, post-death grief, and prolonged grief in informal carers of people living with Motor Neuron Disease (MND) to inform future research and practice. Six electronic databases were searched and two quantitative and eight qualitative studies were identified. Five overarching themes were generated through thematic synthesis. The findings suggest that there are factors that may affect different grieving processes. It might be particularly important to target some factors prior and after the death of the person living with MND such as the knowledge about the progression of the disease, changes in relationships, anxiety and depressive symptoms of carers, and planning for death of the care recipient. Factors that may affect all three grieving processes were also identified such as negative experiences of caregiving, experiences of losses, end of life and psychological support, and emotional avoidance coping.

Parental protection in fathers with negative caregiving experiences: Heightened amygdala reactivity to infant threatening situations.

Parental protection is an important, yet understudied, aspect of parenting behavior. Predictors of the quality of protection and potential underlying neural mechanisms are still unknown. In this study, we examined whether negative caregiving experiences in fathers' own childhood are related to protective behavior and neural reactivity to infant threatening situations. Paternal protective behavior was measured with self- and partner-reported protective behavior and behavioral observations in an experimental set-up (auditory startling task) in 121 first-time fathers (mean age child=19.35 weeks, SD=11.27). Neural activation during exposure to videos of infant-threatening (vs. neutral) situations was measured with functional magnetic resonance imaging (fMRI). We found a significant and positive association between negative caregiving experiences and amygdala reactivity to infant-threatening situations. A history of negative caregiving experiences was not significantly related to reported or observed paternal protective behavior. Our findings suggest that fathers with negative caregiving experiences show emotional hyperreactivity to cues of infant threat.

UNCOVERING THE POSITIVE ASPECTS OF CAREGIVING: A PROFILE OF CAREGIVERS’ DEMOGRAPHIC AND CARE CONTEXTS

Abstract Burden and benefits of caregiving experiences can coexist. The objective of this research is to describe and compare the predictors of the two intertwined caregiving experiences. This study examines how the variations in caregiving experiences can be explained in terms of both positive and negative aspects of caregiving, respectively by demographic characteristics and care related contexts. The Caregiving, Aging, and Financial Experiences study is a national survey intended to examine social conditions and well-being among a representative sample of 4,010 Canadians between age 65 and 85. Within the sample, 1,641 informal caregivers are the focus of the current analysis. Scales of positive and negative caregiving experiences are employed. Findings based on principal axis factor analysis shows that there is clear separate factor loadings between the positive and negative caregiving experiences. Subsequent seemingly unrelated regression analysis shows that there are similarities as well as differences in predictors between the two caregiving experiences. Lastly, the variance explained differs markedly between the two measures, with over 26% of the variance in negative caregiving accounted for by demographic and caregiving factors, but less than 4% of the variance in positive caregiving. This study demonstrates that positive aspects of caregiving is not simply the flip-side of negative caregiving. Standard predictors do not sufficiently explain positive caregiving as well as negative caregiving. Consequently, greater attention to factors that account for positive aspects of caregiving is warranted for an inclusive understanding of caregiving experiences.

Preliminary Analysis of Aspects of Caregiving among Spousal Caregivers and Adult Child Caregivers for Persons with Dementia

AbstractBackgroundWhile dementia caregiving experiences may vary across individuals, many studies have focused on the negative aspects of caregiving and reducing caregiver burden and stress. Understanding both positive and negative aspects of caregiving is essential, particularly between different caregiver types. This study aimed to compare positive and negative caregiving experiences between spousal and adult child caregivers. We also examined whether the caregiver type (spousal caregivers vs. adult child caregivers) is a significant factor predicting these caregiving experiences.MethodWe analyzed baseline data from an ongoing trial to manage sleep problems among persons with dementia (PwD) and their caregivers. Demographic data, Positive Aspects of Caregiving (PAC), Zarit Burden Interview (ZBI), and Center for Epidemiological Studies of Depression (CESD) data were collected from 39 caregivers (n = 27 spouses, n = 12 adult children; 82% women, 54% Whites). Descriptive and bivariate analyses and multiple regression models were conducted.ResultAdult child caregivers reported that providing care for their loved one made them feel more appreciated than spousal caregivers (4.25±1.21 vs. 3.48±0.97, respectively); however, they felt more stress when caring for the PwD and trying to meet other family and work responsibilities (2.75±0.86 vs. 2.07±0.99, respectively) and felt they should be doing more for the PwD (2.17±0.71 vs. 1.30±1.07, respectively; all p<0.05) than did spousal caregivers. No significant differences were found in the PAC and the ZBI total scores by caregiver type. In a separate regression model, CESD total score was the only significant factor predicting PAC and ZBI total scores, controlling for caregiver type, race (Whites vs. others), level of education, employment status, and years of caregiving. However, only the model predicting the ZBI total score was statistically significant (p<0.01, adjusted R2 = 54%).ConclusionThese preliminary findings suggest a critical need to better understand positive and negative caregiving experiences, particularly among adult child caregivers. Assessment of depressive symptoms should be included when examining caregiving experiences among spousal and adult child caregivers. Future studies are warranted to test whether characteristics of PwD or support received by caregivers would contribute to positive or negative caregiving experiences across caregiver types.

Negative and positive experiences of caregiving among family caregivers of older blunt trauma patients.

ObjectivesFamily caregivers play a fundamental role in the care of the older blunt trauma patient. We aim to identify risk factors for negative and positive experiences of caregiving among family caregivers.DesignProspective, nationwide, multi-center cohort study.Setting and participants110 family caregivers of Singaporeans aged≥55 admitted for unintentional blunt trauma with an Injury Severity Score (ISS) or New Injury Severity Score (NISS)≥10 were assessed for caregiving-related negative (disturbed schedule and poor health, lack of family support, lack of finances) and positive (esteem) experiences using the modified-Caregiver Reaction Assessment (m-CRA) three months post-injury.MethodsThe association between caregiver and patient factors, and the four m-CRA domains were evaluated via linear regression.ResultsCaregivers of retired patients and caregivers of functionally dependent patients (post-injury Barthel score <80) reported a worse experience in terms of disturbed schedule and poor health (β-coefficient 0.42 [95% Confidence Interval 0.10, 0.75], p = .01; 0.77 [0.33, 1.21], p = .001), while male caregivers and caregivers who had more people in the household reported a better experience (-0.39 [-0.73, -0.06], p = .02; -0.16 [-0.25, -0.07], p = .001). Caregivers of male patients, retired patients, and patients living in lower socioeconomic housing were more likely to experience lack of family support (0.28, [0.03, -0.53], p = .03; 0.26, [0.01, 0.52], p = .05; 0.34, [0.05, -0.66], p = .02). In the context of lack of finances, caregivers of male patients and caregivers of functionally dependent patients reported higher financial strain (0.74 [0.31, 1.17], p = .001; 0.84 [0.26, 1.43], p = .01). Finally, caregivers of male patients reported higher caregiver esteem (0.36 [0.15, 0.57], p = .001).Conclusions and implicationsNegative and positive experiences of caregiving among caregivers of older blunt trauma patients are associated with pre-injury disability and certain patient and caregiver demographics. These factors should be considered when planning the post-discharge support of older blunt trauma patients.

Opportunities to improve care for patients with peritoneal carcinomatosis and their caregivers.

207 Background: Cancers of the gynecologic and gastrointestinal tracts (GYN/GI) often metastasize along the peritoneum (peritoneal carcinomatosis; PC), causing ascites and malignant obstructions of the bowel, urinary tract, and biliary tree. Patients with PC frequently require palliative surgical interventions; e.g., ostomies, gastric tubes, and catheters. To date, few researchers have described the unique needs of these patients and their caregivers. Methods: We recruited adult patients with advanced GYN/GI cancers, a recent hospitalization for PC, and a new complex care need. We invited adult caregivers of enrolled patients to participate. We abstracted patients’ clinical characteristics and outcomes from the medical record. At baseline, patients completed items related to perceived health status and advance care planning, while caregivers completed the Caregiver Reaction Assessment (CRA) and items related to their caregiving role. All participants completed the Hospital Anxiety and Depression Scale. Results: Sixty-five patients and 40 caregivers completed surveys. Fifty-six (86%) patients had GYN and nine (14%) had GI cancers. Most (56/65, 86%) were re-hospitalized within two months, and over a quarter (18/65, 27%) died within six months of enrollment. Twenty-four (37%) reported they were terminally ill, but only nine (14%) had spoken with a physician about the care they would want to receive if they were dying. Caregivers were primarily spouses (27/40, 70%) who provided most or all of the care for their loved one (25/40, 63%) and engaged in caregiving seven days per week (27/40, 68%). Of the four CRA subscales measuring negative caregiving experiences, mean scores were highest for impact on schedule (3.3, SD = 0.8; possible range 1-5, higher scores indicate greater burden), followed by impact on finances (2.3, SD = 1.1), impact on health (2.0, SD = 0.65), and lack of family support (1.8, SD = 0.67). Caregivers reported that they received training on a mean of 1.1 (SD = 1.3) clinical care tasks but performed a mean of 2.9 (SD = 1.7) clinical care tasks. Thirty-two (49%) patients and 9 (23%) caregivers met borderline case or case criteria for depressive symptoms, while 26 (40%) patients and 15 (38%) caregivers met borderline case or case criteria for anxiety symptoms. Conclusions: Patients with PC and their caregivers are highly burdened and distressed. Patients are at high-risk for re-hospitalization, but few have discussed their end-of-life wishes with their medical teams. Interventions that train these patients and their caregivers to perform clinical care tasks, facilitate serious illness conversations, and provide psychosocial support are needed. Clinical trial information: NCT03367247.

Multi-family therapy for eating disorders across the lifespan: A systematic review and meta-analysis.

Eating disorders (EDs) have an estimated prevalence rate of 1%-5% across Europe. Effective adjunct interventions are needed to support the 20%-40% of families whose recovery requires additional support to first line approaches. This systematic review and meta-analysis aimed to establish whether multi-family therapy (MFT) improves the physical and psychological health of patients and family members. Searches were conducted in PsycINFO, MEDLINE, PubMed, EMBASE, CINAHL, and the Cochrane Library in March 2021. 15 studies (850 patients) met the inclusion criteria. Meta-analysis demonstrated MFT resulted in significant benefits in weight gain, ED symptoms, patients' and parents' depression symptoms, and parents' negative experiences of caregiving. However, significant improvements were only evident when comparisons were drawn before and after the intervention; these dissipated when MFT was compared to another intervention. There was no evidence MFT improves family functioning, positive aspects of caregiving, nor patient and parental anxiety. Intervention completion rates ranged from 86% to 100% indicating a high level of acceptability. Studies varied with regard to intervention length and structure, follow-up period, and outcome measures utilised; most were rated as moderate or weak in methodological quality. More rigorous and large scale randomised controlled trials are needed to fully assess the effectiveness of MFT.

Experiences of family caregivers 3-months after stroke: results of the prospective trans-regional network for stroke intervention with telemedicine registry (TRANSIT-Stroke)

BackgroundLong-term support of stroke patients living at home is often delivered by family caregivers (FC). We identified characteristics of stroke patients being associated with receiving care by a FC 3-months (3 M) after stroke, assessed positive and negative experiences and individual burden of FC caring for stroke patients and determined factors associated with caregiving experiences and burden of FC 3 M after stroke.MethodsData were collected within TRANSIT-Stroke, a regional telemedical stroke-network comprising 12 hospitals in Germany. Patients with stroke/TIA providing informed consent were followed up 3 M after the index event. The postal patient-questionnaire was accompanied by an anonymous questionnaire for FC comprising information on positive and negative experiences of FC as well as on burden of caregiving operationalized by the Caregiver Reaction Assessment and a self-rated burden-scale, respectively. Multivariable logistic and linear regression analyses were performed.ResultsBetween 01/2016 and 06/2019, 3532 patients provided baseline and 3 M-follow-up- data and 1044 FC responded to questionnaires regarding positive and negative caregiving experiences and caregiving burden. 74.4% of FC were older than 55 years, 70.1% were women and 67.5% were spouses. Older age, diabetes and lower Barthel-Index in patients were significantly associated with a higher probability of receiving care by a FC at 3 M. Positive experiences of FC comprised the importance (81.5%) and the privilege (70.0%) of caring for their relative; negative experiences of FC included financial difficulties associated with caregiving (20.4%). Median overall self-rated burden was 30 (IQR: 0–50; range 0–100). Older age of stroke patients was associated with a lower caregiver burden, whereas younger age of FC led to higher burden. More than half of the stroke patients in whom a FC questionnaire was completed did self-report that they are not being cared by a FC. This stroke patient group tended to be younger, more often male with less severe stroke and less comorbidities who lived more often with a partner.ConclusionsThe majority of caregivers wanted to care for their relatives but experienced burden at the same time. Elderly patients, patients with a lower Barthel Index at discharge and diabetes are at higher risk of needing care by a family caregiver.Trial registrationThe study was registered at “German Clinical Trial Register”: DRKS00011696. https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00011696

The Burden of Caring for Dependent Older People and the Resultant Risk of Depression in Family Primary Caregivers in Italy

Long-Term Care (LTC) for older people in need of care is a critical issue affecting the quality of life of family caregivers (as well as older people), encompassing both negative and positive caregiving experiences. Providing support to family caregivers is essential because they play a crucial role in sharing the societal burden of LTC for the growing frail older population. By presenting the results of a survey carried out in 2019–2020 in Central Italy, this study aims to describe the characteristics and estimate by a multivariate logistic model the correlates of depressive symptoms in 369 primary caregivers of dependent older people. Caregivers are mostly women who provide a high amount of care in terms of weekly hours as a result of insufficient assistance from public or private care services. More than half of the sample show depressive symptoms, indicating a fairly serious situation. Perceived burden is a strong predictor of depression. The findings offer suggestions and policy implications. The fragmentation of the care context should be addressed by allocating sufficient funding to expand the supply of public in-kind services and integrate cash-for-care schemes, thus alleviating the burden and mitigating the negative consequences of care on physical and mental health.

Longitudinal trajectories of caregiving experiences among primary informal caregivers of patients with metastatic solid cancer (stage IV).

Cancer is a significant cause of mortality worldwide. The diagnosis of advanced cancer affects both patients and their family caregivers. Understanding the course of both negative and positive experiences of caregiving provides a more comprehensive understanding of the caregiving experience. The study aims to identify joint trajectories of burden and esteem among family caregivers of patients with solid metastatic cancer, and to identify caregiver characteristics that predict membership for each delineated trajectory. A prospective longitudinal study of 346 informal family caregivers of patients with solid metastatic cancer were recruited between July 2016 and December 2019. Surveys were conducted every 3months for 2years. We assessed caregiver burden and positive aspects of caregiving using the modified Caregiver Reaction Assessment. We estimated the joint trajectories for these outcomes using group-based multi-trajectory modelling. We identified 4 trajectories describing caregivers with (1) low burden, moderate esteem (38.3%), (2) low burden, high esteem (20.3%), (3) high burden, low esteem (16.4%), (4) high burden, high esteem (24.9%). Compared to the 'low burden, high esteem' trajectory, male and non-spousal caregivers were more likely to experience high burden and esteem while caregivers from low socioeconomic status were more likely to belong to trajectories with a high burden. Recognising caregivers at high risk of belonging to trajectories with high burden or low esteem may enable healthcare professionals to anticipate and provide appropriate support to mitigate the impact of negative outcomes.