Informal caregiver well-being during and after patients' treatment with adjuvant chemotherapy for colon cancer: a prospective, exploratory study.
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ABSTRACT: Introduction
Caring for a significant other during cancer treatment can be demanding. Little is known about the well-being of informal caregivers of patients with colon cancer. This study aims to examine informal caregiver well-being during adjuvant chemotherapy for colon cancer.Material and methods
This exploratory longitudinal, prospective study measured the course of informal caregiver burden (Self-Perceived Pressure of Informal Care), distress (Hospital Anxiety and Depression Scale), health-related quality of life (RAND-36), marital satisfaction (Maudsley Marital Questionnaire), social support (Social Support List - Discrepancies), fatigue (Abbreviated Fatigue Questionnaire), and self-esteem (Caregiver Reaction Assessment) before (T0), during (T1), and after (T2) patients' treatment.Results
Baseline data of 60 out of 76 eligible dyads (79%) were analyzed. Mean levels of informal caregiver burden and distress improved significantly over time, as did their health-related quality of life and perceived social support. At baseline, 30% and 26.7% of informal caregivers reported moderate-to-high levels of burden and clinically relevant levels of distress, respectively, which changed to 20% and 18.8% at T2. Informal caregiver burden and distress at baseline were the strongest predictors of informal caregiver burden and distress during and following patients' treatment, respectively.Conclusion
When informal caregivers and patients experience problems before start of adjuvant chemotherapy, problems seem to improve over time. Approximately 20% of informal caregivers remain burdened and distressed after patients' end of treatment. Paying attention to baseline distress and burden seems indicated, as these were strong predictors of informal caregivers' well-being during and after treatment.
SUBMITTER: Langenberg SMCH
PROVIDER: S-EPMC7981306 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundInformal caregivers represent an important and vulnerable part of the society. They can experience negative psychological symptoms, such as depression and anxiety. Internet-based cognitive behavioural therapy (ICBT) is a promising psychological support option that could be effective in reducing informal caregiver burden as well as improving psychological well-being. Qualitative studies are valuable for gaining insights into participant experiences of using ICBT.ObjectiveThe main aim of this study was to explore informal caregiver experiences and hence acceptability and feasibility of the transdiagnostic ICBT program aimed at reducing informal caregiver burden and increasing the quality of life.MethodsFollowing a strategic sampling procedure, 23 informal caregivers were recruited from previous randomized controlled trial for informal caregivers in Lithuania. Participants were interviewed over phone, using semi-structured interview questions. Interviews were analysed using a thematic analysis approach.ResultsFour themes and a total of 10 sub-themes were generated: I A program as a means of change (Convenience and applicability of the format and materials; Ability to focus on own needs; Opportunity for communication), II Suggestions for the program (Including live support; Tailoring materials and format; Providing with more time and resources), III Driving personal and situational forces (Developing acceptance and adjustment over time; Being proactive and/or receiving support) and Hindering situational factors (Deterioration and unpredictability of the care-receivers health; Lacking external support and opportunities for respite).ConclusionsMost of the informal caregivers were found to be satisfied with the program's format and materials as well as the communication with the therapist via a message function in the program. Some suggestions were made regarding implementation of the live support option. Also, suggestions regarding possibility for tailoring the program's content. Lastly, several personal and situational factors were identified as important in affecting informal caregiver well-being. We conclude that ICBT has potential in reducing informal caregiver burden and improving psychological health. Further research trials are warranted for evaluating both, the effectiveness and the feasibility of the program.
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Project description:Background and objectivesThe majority of long-term care needs are placed upon family members who often receive minimal support. In this study, we collaborate with family caregivers to create an ethnodrama about their experience and assess outcomes of participation, including caregiver well-being.MethodsParticipants met over 4 months to discuss their roles as informal caregivers. Discussions were analyzed in a two-phase process and themes were developed into a script. Member checks included script review and revisions, culminating in viewing a professional performance of the play followed by a post-performance discussion and reflection. Data were gathered at six timepoints to assess caregiver well-being and longitudinal analysis was used to assess change during the course of the intervention.ResultsTwenty-two caregivers completed intervention activities. Participant reactions to the process evolved overtime, from an initial hesitance about what individuals had to offer leading to an acknowledgement of feeling heard and a desire to help others. Caregivers had high levels of burden and positive perceptions towards caregiving. Those with high levels of self-rated health had the lowest levels of burden and the most positive perceptions of caregiving.Discussion and implicationsDeveloping an ethnodrama in partnership with caregivers is a unique and feasible method of caregiver support, mentoring, reflexivity, and meaning making. Promoting caregiver health early in the caregiving trajectory has the potential of reducing burden and elevating positivity towards caregiving.
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Project description:Although providing care to a family member or friend may provide psychological benefits, informal (i.e., unpaid) caregivers also encounter difficulties which may negatively affect their quality of life as well as their mental and physical health. Loneliness is one important challenge that caregivers face, with this psychological state being associated with morbidity and premature mortality. Although previous research has identified loneliness as an issue associated with being an informal caregiver, there is a paucity of evidence that attempts to understand this phenomenon in depth. This study aimed to examine informal caregivers' reflections on, and accounts of, experiences of loneliness linked to their caregiving situation. As part of a cross-sectional, qualitative study, sixteen semi-structured interviews were conducted with 8 spousal caregivers, 4 daughters caring for a parent, 3 mothers caring for a child (or children), and 1 woman looking after her partner. The cared-for persons were suffering from a range of mental and physical health conditions (e.g., dementia, frailty due to old age, multiple sclerosis, depression, autism). Data were analyzed using an inductive thematic analysis. Experiences of loneliness were described by reference to a context of shrunken personal space and diminished social interaction caused by the restrictions imposed by the caregiving role. Loneliness was also articulated against a background of relational deprivations and losses as well as sentiments of powerlessness, helplessness, and a sense of sole responsibility. Social encounters were also seen to generate loneliness when they were characterized by some form of distancing. Though not all sources or circumstances of loneliness in caregivers are amenable to change, more opportunities for respite care services, as well as a heightened sensibility and social appreciation of caregivers' valued contributions could help caregivers manage some forms of loneliness.
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Project description:ObjectivesTo measure the association between spousal depression, general health, fatigue and sleep, and future care recipient healthcare expenditures and emergency department (ED) use.DesignProspective cohort study.SettingHealth and Retirement Study.ParticipantsHome-dwelling spousal dyads in which one individual (care recipient) was aged 65 and older and had one or more activity of daily living or instrumental activity of daily living disabilities and was enrolled in Medicare Part B (N = 3,101).ExposureCaregiver sleep (Jenkins Sleep Scale), depressive symptoms (Center for Epidemiologic Studies Depression-8 Scale), and self-reported general health measures.MeasurementsPrimary outcome was care recipient Medicare expenditures. Secondary outcome was care recipient ED use. Follow-up was 6 months.ResultsCaregiver depressive symptoms score and six of 17 caregiver well-being measures were prospectively associated with higher care recipient expenditures after minimal adjustment (P < .05). Higher care recipient expenditures remained significantly associated with caregiver fatigue (cost increase, $1,937, 95% confidence interval (CI) = $770-3,105) and caregiver sadness (cost increase, $1,323, 95% CI = $228-2,419) after full adjustment. Four of 17 caregiver well-being measures, including severe fatigue, were significantly associated with care recipient ED use after minimal adjustment (P < .05). Greater odds of care recipient ED use remained significantly associated with caregiver fatigue (odds ratio (OR) = 1.24, 95% CI = 1.01-1.52) and caregiver fair to poor health (OR = 1.23, 95% CI = 1.04-1.45) after full adjustment. Caregiver total sleep score was not associated with care recipient outcomes.ConclusionPoor caregiver well-being, particularly severe fatigue, is independently and prospectively associated with higher care recipient Medicare expenditures and ED use.
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Project description:BackgroundGrowing evidence suggests that informal helping (unpaid volunteering not coordinated by an organization or institution) is associated with improved health and well-being outcomes. However, studies have not investigated whether changes in informal helping are associated with subsequent health and well-being.MethodsThis study evaluated if changes in informal helping (between t0;2006/2008 and t1;2010/2012) were associated with 35 indicators of physical, behavioral, and psychosocial health and well-being (at t2;2014/2016) using data from 12,998 participants in the Health and Retirement study - a national cohort of US adults aged > 50.ResultsOver the four-year follow-up period, informal helping ≥ 100 (versus 0) hours/year was associated with a 32% lower mortality risk (95% CI [0.54, 0.86]), and improved physical health (e.g., 20% reduced risk of stroke (95% CI [0.65, 0.98])), health behaviors (e.g., 11% increased likelihood of frequent physical activity (95% CI [1.04, 1.20])), and psychosocial outcomes (e.g., higher purpose in life (β = 0.15, 95% CI [0.07, 0.22])). However, there was little evidence of associations with various other outcomes. In secondary analyses, this study adjusted for formal volunteering and a variety of social factors (e.g., social network factors, receiving social support, and social participation) and results were largely unchanged.ConclusionsEncouraging informal helping may improve various aspects of individuals' health and well-being and also promote societal well-being.
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Project description:ImportanceUnderstanding youth well-being during the COVID-19 pandemic can help appropriately allocate resources and inform policies to support youth.ObjectiveTo examine caregiver-reported changes in the psychological well-being of their children 3 to 4 months after the start of COVID-19 stay-at-home orders, and to examine the association of caregiver-reported COVID-19 exposure and family stressors with caregiver perceptions of child psychological well-being.Design, setting, and participantsThis survey study used an anonymous survey distributed via email from June 24 to July 15, 2020, to 350 000 families of students attending public schools in Chicago, Illinois. The a priori hypotheses were that caregivers would report worsening in child psychological well-being during the closure period compared with preclosure and that exposure to COVID-19-related stressors would be associated with a higher probability of worsening child psychological well-being. Data were analyzed from September 10, 2020, to March 15, 2021.Main outcomes and measuresOutcomes were 7 mental health concerns and 5 positive adjustment characteristics reported by caregivers using a retrospective pre-post design. COVID-19 exposure and family stressors were also reported by caregivers.ResultsAmong 350 000 families invited to participate, 32 217 caregivers (10 827 [39.3%] White, 8320 [30.2%] Latinx, 6168 [22.4%] Black; 2223 [8.1%] with multiple or other races/ethnicities) completed the survey on behalf of 49 397 children in prekindergarten through 12th grade. Child-specific outcomes were reported for 40 723 to 40 852 children depending on the specific question. The frequency of caregiver endorsement of youth mental health concerns ranged from 0.1 percentage point (suicidal ideation or self-harm, reported by 191 caregivers [0.5%] preclosure vs 246 caregivers [0.6%] during closure; P < .001) to 28.3 percentage points (loneliness, reported by 1452 caregivers [3.6%] preclosure vs 13 019 caregivers [31.9%] during closure; P < .001) higher after the end of in-person instruction compared with preclosure. Frequency of caregiver endorsement of youth positive adjustment characteristics ranged from -13.4 percentage points (plans for the future, reported by 18 114 caregivers [44.3%] preclosure vs 12 601 caregivers [30.9%] during closure; P < .001) to -30.9 percentage points (positive peer relationships, reported by 24 666 caregivers [60.4%] preclosure vs 19 130 caregivers [46.8%] during closure; P < .001) lower after the end of in-person instruction. Significant differences in COVID-19 exposure were observed across racial/ethnic (F3,27 534 = 614.8; P < .001) and household income strata (F5,27 506 = 842.0; P < .001). After accounting for covariates, all mental health concerns increased in probability (eg, angry: odds ratio, 1.55 [95% CI, 1.48-1.62]; P < .001) and all the positive adjustment characteristics decreased in probability (eg, hopeful or positive: odds ratio, 0.88 [95% CI, 0.84-0.92]; P < .001) as COVID-19 exposure and family stressors increased.Conclusions and relevanceIn this survey study of caregivers during the COVID-19 pandemic, COVID-19 and resulting exposure to stress were associated with worse youth psychological well-being, demonstrating the need for a comprehensive public health approach that prioritizes children's well-being and draws broad public attention to the mental health needs of youth.
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Project description:BackgroundSince 2004, a regimen of 6 months of treatment with oxaliplatin plus a fluoropyrimidine has been standard adjuvant therapy in patients with stage III colon cancer. However, since oxaliplatin is associated with cumulative neurotoxicity, a shorter duration of therapy could spare toxic effects and health expenditures.MethodsWe performed a prospective, preplanned, pooled analysis of six randomized, phase 3 trials that were conducted concurrently to evaluate the noninferiority of adjuvant therapy with either FOLFOX (fluorouracil, leucovorin, and oxaliplatin) or CAPOX (capecitabine and oxaliplatin) administered for 3 months, as compared with 6 months. The primary end point was the rate of disease-free survival at 3 years. Noninferiority of 3 months versus 6 months of therapy could be claimed if the upper limit of the two-sided 95% confidence interval of the hazard ratio did not exceed 1.12.ResultsAfter 3263 events of disease recurrence or death had been reported in 12,834 patients, the noninferiority of 3 months of treatment versus 6 months was not confirmed in the overall study population (hazard ratio, 1.07; 95% confidence interval [CI], 1.00 to 1.15). Noninferiority of the shorter regimen was seen for CAPOX (hazard ratio, 0.95; 95% CI, 0.85 to 1.06) but not for FOLFOX (hazard ratio, 1.16; 95% CI, 1.06 to 1.26). In an exploratory analysis of the combined regimens, among the patients with T1, T2, or T3 and N1 cancers, 3 months of therapy was noninferior to 6 months, with a 3-year rate of disease-free survival of 83.1% and 83.3%, respectively (hazard ratio, 1.01; 95% CI, 0.90 to 1.12). Among patients with cancers that were classified as T4, N2, or both, the disease-free survival rate for a 6-month duration of therapy was superior to that for a 3-month duration (64.4% vs. 62.7%) for the combined treatments (hazard ratio, 1.12; 95% CI, 1.03 to 1.23; P=0.01 for superiority).ConclusionsAmong patients with stage III colon cancer receiving adjuvant therapy with FOLFOX or CAPOX, noninferiority of 3 months of therapy, as compared with 6 months, was not confirmed in the overall population. However, in patients treated with CAPOX, 3 months of therapy was as effective as 6 months, particularly in the lower-risk subgroup. (Funded by the National Cancer Institute and others.).
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