Primary Family Caregivers Research Articles

Correlation between primary family caregiver identity and maternal depression risk in poor rural China.

Prenatal and postpartum depression are important public health challenges because of their long-term adverse impacts on maternal and neonatal health. This study investigated the risk of maternal depression among pregnant and postpartum women in poor rural China, along with the correlation between primary family caregiver identity and maternal depression risk. Pregnant women and new mothers were randomly selected from poor rural villages in the Qinba Mountains area in Shaanxi. Basic demographic information was collected regarding the women and their primary family caregivers. The Edinburgh Postnatal Depression Scale was used to identify women at risk of depression, and the Perceived Social Support Scale was used to evaluate perceived family support. This study included 220 pregnant women and 473 new mothers. The mean proportions of women at risk of prenatal and postpartum depression were 19.5% and 18.6%, respectively. Regression analysis showed that identification of the baby's grandmother as the primary family caregiver was negatively correlated with maternal depression risk (β=-0.979, 95% confidence interval [CI]=-1.946 to -0.012, P=0.047). However, the husband's involvement in that role was not significantly correlated with maternal depression risk (β=-0.499, 95% CI=-1.579 to 0.581, P=0.363). Identification of the baby's grandmother as the primary family caregiver was positively correlated with family support score (β=0.967, 95% CI=-0.062 to 1.996, P=0.065). Prenatal and postpartum depression are prevalent in poor rural China. The involvement of the baby's grandmother as the primary family caregiver may reduce maternal depression risk, but the husband's involvement in that role has no effect.

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.

Spiritual Care during Care Process – From Former Family Caregiver Perspectives

&lt;p&gt;從擔任起家庭照顧者開始，即面臨生命中重大衝擊、改變及抉擇。許多家庭照顧者彷彿按下生命的暫停鍵，自己角色逐漸消失在照顧路上。本研究探討畢業照顧者從照顧歷程到責任終了後，靈性關懷介入對其照顧歷程的影響。以質性研究半結構式深度訪談進行資料蒐集，研究對象為曾擔任家庭主要照顧者至少1年以上，且結束照顧責任1～3年者。共訪問6位畢業照顧者，性別各半，年齡在23～61歲之間，5位基督徒及1位一般民間信仰者。訪談大綱經專家效度確認，訪談逐字稿以紮根理論分析。結果顯示家庭照顧者的照顧價值觀及生命反思隨著照顧歷程不斷變化，照顧歷程的靈性挑戰與悲傷歷程相似。提供靈性關懷可參考3R原則。家庭照顧者內在的自我靈性照顧深深連結於個人的信仰信念或社會規範中，是重要的復原因子。建議家庭照顧者本身要能主動向外與他人連結，向內接納自我，向人與至高者敞開心靈的通道；親友對家庭照顧者的靈性關懷，需持續至其結束照顧責任後。日常主動陪伴、連結與提供必要的支援，能預防其因失落而放棄生存意志。專業助人者在提供靈性關懷時，應視家庭照顧者為獨立需被關懷的個體；本研究並提出未來研究建議。&lt;/p&gt; &lt;p&gt;&amp;nbsp;&lt;/p&gt;&lt;p&gt;Being the main family caregiver means their lives are facing major impacts, changes, and choices throughout the entire caring process. Many family caregivers seem to press the pause button of their lives, and part-take in a completely different way of life. The purpose of the study is to explore the impact of spiritual care intervention on the care process of former primary family caregivers from the care process to the end of their responsibilities. Data collection was used semi-structured in-depth interviews. The subjects had taken the role as a primary family caregiver at least one year and had subsequently ended their responsibility for a minimum of one to a maximum of three years. Six former primary family caregivers were interviewed, among whose gender was equally distributed. Ages ranged from 23 to 61 years old. Five cases come from Christian background and one from traditional folk belief. The validity of the interview outline was agreed upon by experts. The interview scripts are analysed with grounded theory. The results show how care values and life reflections are constantly changing along with the care process. The spiritual challenge during of the care process is similar to the five stages of the grieving process. To provide spiritual care, one can refer to the 3R principles. The inner self-spiritual care of the family caregivers is deeply connected to the individual’s beliefs or social norms, and is an important resiliency factor. The family caregivers are encouraged to actively build connections outwardly, make peace with themselves inwardly, and open up their spirit to receive help from people and God. The spiritual care of relatives and friends for family caregivers are suggested to last beyond the end of the care. Daily active companionship, connection and provision of necessary support can prevent the caregivers from giving up their will to survive due to loss. When professional helpers provide spiritual care, they should treat family caregivers as independent individuals who need to be cared for. This research also proposes future research recommendations.&lt;/p&gt; &lt;p&gt;&amp;nbsp;&lt;/p&gt;

252P Preferred place of death among terminally ill cancer patients: A single centre observational study from India

The place of death is an important aspect of end-of-life care. An individual achieving his or her preferred place of death (PPOD) is a quality marker of good death. Concordance in the wishes of the patient and family is also equally important. Not much data is available on the reasons pertaining to PPOD in the Indian population. We aimed to identify the PPOD among terminally ill cancer patients and their reasons. We also assessed the concordance between patient and primary family caregiver (PFCG) regarding the same.

Factors associated with positive aspects of caregiving experiences among family caregivers of persons living with dementia in Taiwan: A cross-sectional study

This study examined the associated factors of positive aspects of caregiving experience among family caregivers of persons living with dementia in Taiwan. This cross-sectional correlational study recruited dyads of primary family caregivers of persons living with dementia by convenience sampling from dementia care centers in northern Taiwan from September 9, 2020, to June 20, 2021. A total of 100 dyads who met inclusions criteria agreed to participate in the study. Significant predictors of positive aspects of caregiving experience were scores of dementia behavior disturbance (t=-3.63, p =<.001), a spousal caregiver (t=2.83, p =.006), and the subscale score for satisfaction on the functional social support (t=2.62, p =.01). Our findings suggest prevention and treatment of dementia behavior disturbance for persons living with dementia, improving satisfaction with functional social support, and focusing on non-spousal caregivers could enhance experiences of positive caregiving for family caregivers.

Caregiving burden and social support in family caregivers of patients with cancer: A cross-sectional study

Introduction Providing care for patients by family caregivers causes in several consequences known as “Caregiving Burden”, which affects the caregiver's health and the whole family process, considered in holistic healthcare/nursing. This study aimed to evaluate the caregiving burden and social support in family caregivers of patients with cancer and their influencing factors in a local area in Iran. Methods In this cross-sectional study, 190 family members of patients with cancer were studied through convenient sampling method. Data were collected using demographic data sheet enriched with Karnofsky Performance Status Scale and Katz Index of Independence in Activities of Daily Living (ADL), and Zarit Burden Inventory and Medical Outcomes Social Support Survey questionnaires. Results The results indicated intermediate performance status and moderate independence in ADL in patients. The mean score of caregiving burden was 43.95 ± 17.48 which indicates moderate to severe burden. The average social support in the caregivers was 60.25 ± 23.81% which shows above the average social support. Both performance status and dependence in ADL of patient had statistically significant effect on the caregiving burden in caregivers. Also a statistically significant negative relationship was observed between caregiving burden and social support in primary family caregivers of patients with cancer. Discussion Considering the increasing importance of primary care provided by families, developing strategies for providing caregiver's needs through family care in cancer nursing is essential. So supporting caregivers through family nursing in holistic healthcare by providing social support, can play a significant role in reducing caregiving burden in healthcare services considering the qualified holistic healthcare/nursing.

Deploying the Behavioral and Environmental Sensing and Intervention for Cancer Smart Health System to Support Patients and Family Caregivers in Managing Pain: Feasibility and Acceptability Study.

BackgroundDistressing cancer pain remains a serious symptom management issue for patients and family caregivers, particularly within home settings. Technology can support home-based cancer symptom management but must consider the experience of patients and family caregivers, as well as the broader environmental context.ObjectiveThis study aimed to test the feasibility and acceptability of a smart health sensing system—Behavioral and Environmental Sensing and Intervention for Cancer (BESI-C)—that was designed to support the monitoring and management of cancer pain in the home setting.MethodsDyads of patients with cancer and their primary family caregivers were recruited from an outpatient palliative care clinic at an academic medical center. BESI-C was deployed in each dyad home for approximately 2 weeks. Data were collected via environmental sensors to assess the home context (eg, light and temperature); Bluetooth beacons to help localize dyad positions; and smart watches worn by both patients and caregivers, equipped with heart rate monitors, accelerometers, and a custom app to deliver ecological momentary assessments (EMAs). EMAs enabled dyads to record and characterize pain events from both their own and their partners’ perspectives. Sensor data streams were integrated to describe and explore the context of cancer pain events. Feasibility was assessed both technically and procedurally. Acceptability was assessed using postdeployment surveys and structured interviews with participants.ResultsOverall, 5 deployments (n=10 participants; 5 patient and family caregiver dyads) were completed, and 283 unique pain events were recorded. Using our “BESI-C Performance Scoring Instrument,” the overall technical feasibility score for deployments was 86.4 out of 100. Procedural feasibility challenges included the rurality of dyads, smart watch battery life and EMA reliability, and the length of time required for deployment installation. Postdeployment acceptability Likert surveys (1=strongly disagree; 5=strongly agree) found that dyads disagreed that BESI-C was a burden (1.7 out of 5) or compromised their privacy (1.9 out of 5) and agreed that the system collected helpful information to better manage cancer pain (4.6 out of 5). Participants also expressed an interest in seeing their own individual data (4.4 out of 5) and strongly agreed that it is important that data collected by BESI-C are shared with their respective partners (4.8 out of 5) and health care providers (4.8 out of 5). Qualitative feedback from participants suggested that BESI-C positively improved patient-caregiver communication regarding pain management. Importantly, we demonstrated proof of concept that seriously ill patients with cancer and their caregivers will mark pain events in real time using a smart watch.ConclusionsIt is feasible to deploy BESI-C, and dyads find the system acceptable. By leveraging human-centered design and the integration of heterogenous environmental, physiological, and behavioral data, the BESI-C system offers an innovative approach to monitor cancer pain, mitigate the escalation of pain and distress, and improve symptom management self-efficacy.International Registered Report Identifier (IRRID)RR2-10.2196/16178

Aspects of Physical and Mental Care for Cancer Patients and Family Caregivers

Cancer, the primary cause of death in Taiwan for 40 years, remains a disease that cannot be completely controlled by modern medicine. Although medical techniques are improving, involving family caregivers in the treatment of patients with cancer is very important to improving treatment outcomes. Family caregivers participate in the treatment process and help ensure treatment compliance and care continuity for patients. Cancer represents a major crisis not only for patients but also for their primary family caregivers. Family members often serve as informal caregivers to patients with cancer while also dealing with the related medical costs and physical and psychological burdens (Seo & Park, 2019). Providing care and support for family members is an extraordinary challenge during the treatment journey. Many family caregivers ignore their own needs and emotions, and focus their full attention on their beloved family members with cancer. However, this situation may impact their health-related quality of life (Abbasi et al., 2020). Cancer patients and family caregivers often have unmet needs related to cancer care, psychosocial health, daily activities, social life, and cancer-treatment knowledge (Tang, 2019; Wang et al., 2018). The important role shouldered by family caregivers is significantly related to their unmet needs and loadings, which may negatively impact their quality of life and care-delivery ability (Abbasi et al., 2020; Mirsoleymani et al., 2017). Therefore, healthcare providers should intervene to reduce both the burden on family caregivers and the indirect, negative impact on the health-related quality of life of care recipients. In light of the above, we have invited four experts in cancer nursing to share articles in this issue on patients and their family caregivers dealing with pancreatic, pediatric, and gynecological cancers as well as on the topic of cancer immunotherapy. We hope professional nurses and medical health caregivers obtain new and useful information from these articles and apply it in clinical practice.

A tool for incorporating interprofessional perspectives into dental students decision-making: A 2-year follow-up on this learning outcome.

ObjectivesTo analyze student performance when using a sustainable teaching tool developed to guide learning toward interprofessional perspectives.MethodsThis study compiled data about D4 students’ performance when using an interprofessional education (IPE) teaching tool reported previously in this journal, during their 5‐week Geriatric and Special Needs Program rotation in the academic years 2018–2019 and 2019–2020. Ninety‐two students were introduced to IPE concepts and teaching tools during their orientation. Students were then asked a question regarding the perspective of each healthcare team member and whether they would contact these healthcare team members for collaboration during the provision of oral care with regard to various patient cases. Students were scored on whether they answered the question about the perspective of each health care team member. The same two independent evaluators also noted whether the student thought each member of the health care team should be contacted.ResultsA majority (90.2%–95.7%) of dental students applied their knowledge to questions regarding each health care team member's perspectives. The profession that dental students most often indicated they wished to contact for collaboration was primary care providers (n = 70; 76.1%), followed by family caregivers (n = 54; 58.7%), and pharmacists (n = 46; 50.0%). The results of the interrater agreement between the two‐faculty scoring students were between 86.7% and 100%.ConclusionsThe teaching tool is sustainable and succinct. Students considered the perspectives of each health care team member at a rate above 90%, and the interrater agreement was high among the faculty evaluators. Students considered contacting primary care providers, family caregivers, and pharmacists more often than the other health care team members. We see this model as one approach to begin the articulation of learning outcomes for IPP.

Treatment-related communication experiences and expectations among Indian cancer patients receiving radiation therapy and their family members: A qualitative study

ObjectiveTo explore Indian cancer patients’ and their primary family caregivers’ (PFC) experiences and expectations of treatment-related communication with their physician while undergoing radiation therapy. MethodsParticipants, comprising patient-PFC dyads (n = 32), patients only (n = 33) and PFC only (n = 7), were recruited from one hospital in Mumbai, India. Semi-structured interviews explored participants’ perceived role in cancer-related decision-making, diagnosis and prognosis communication experiences with the physician, communication expectations of their treating physician, and information needs. Interviews were audio-recorded, transcribed verbatim, and analysed using the framework approach. ResultsMain themes included: (i) patients’ passive role in treatment communication, (ii) family as an integral part of the medical consultation, and (iii) dyads’ expectations and beliefs about the role of the physician. ConclusionIndian cancer patients played a passive role in treatment decision-making while physicians were seen as primary medical decision-makers. Further, PFCs provided the final consent for the treatment plan and acted as a mediator/moderator between the patient-physician. Practice implicationsThese findings suggest the need for (i) interventions such as question prompt lists that may improve patient activation and caregiver preparedness, and (ii) triadic communication training interventions for optimal communication between the three stakeholders (i.e., patient, physician and PFC).

Parents taking action adapted to parents of Black autistic children: Pilot results

AbstractThere is a dearth of culturally relevant, family‐centered programs for parents raising Black autistic children, despite significant racial disparities in autism diagnoses and service access. Using a mixed‐methods convergent study design, we report qualitative and quantitative findings from a pilot trial of a peer‐to‐peer program, Parents Taking Action (PTA), adapted to primary family caregivers of Black autistic children with or at increased likelihood for autism. We aimed to understand the feasibility of delivering PTA with fidelity to the manual; participants' acceptability of program strategies; and pre–post changes in child, parent, and family outcomes. Three peer mentors (“Parent Leaders”) delivered the 14‐session intervention to seven participants. All Parent Leaders and participants were mothers of Black autistic children. We interviewed participants and Parent Leaders regarding program content and outcomes. We also collected fidelity checklists and pre–post, parent‐report measures on autism knowledge, family outcomes (e.g., advocacy), stress, depression, and child behavior. Parents reported on program acceptability at post‐intervention only. We found the Parent Leaders delivered the program with overall high levels of fidelity, based on our observations and Parent Leaders' self‐reported checklists. Participants reported high acceptability of the intervention strategies and provided feedback on methods to improve application of the content. We found statistically significant pre–post quantitative improvements in parent‐reported knowledge of their rights and child advocacy, autism knowledge, and child social competence. Participants and Parent Leaders expanded on these changes in interviews, and identified improvements in autism knowledge, parent stress and depression, family outcomes, and child behavior related to program participation. We conclude PTA is a promising, culturally and contextually relevant intervention for parents of Black autistic children. A randomized controlled trial is needed to rigorously evaluate changes in child, parent, and family outcomes.

Cognitive behavioral therapy versus general health education for family caregivers of individuals with heart failure: a pilot randomized controlled trial

BackgroundWhile support from family caregivers is essential in the care of patients with heart failure (HF), caregiving places a considerable burden on family caregivers. We examined the preliminary effects of cognitive behavioral therapy (CBT) for caregivers of individuals with HF.MethodsIn this pilot randomized controlled trial, patients with HF and their primary family caregivers (30 dyads) were randomized into CBT (n = 15) or general health education (GHE, n = 15) groups. Caregivers received 8 weekly individual sessions of either CBT (intervention) or GHE (attention control condition). Caregivers completed questionnaires at baseline, post-intervention, and 6 months. Saliva samples collected from caregivers at baseline and post-intervention were analyzed for salivary cortisol. The cortisol awakening response (CAR) and area under the curve (AUC) were calculated using log-transformed cortisol values. We analyzed data from 26 (14 receiving CBT and 12 receiving GHE) caregivers who received at least one session of CBT or GHE (modified intention-to treat) using linear mixed models. Each model included time, study group, and time-by-study group interaction as fixed effects.ResultsPatients were older (66.94 ± 14.01 years) than caregivers (55.09 ± 15.24 years), and 54% of patients and 54% of caregivers were female. Most caregivers (58%) were spouses. A total of 14 (93%) CBT and 12 (80%) GHE participants received at least 1 session (p = .60), and 11 (73%) CBT and 11 (73%) GHE participants completed all 8 sessions (p = 1.00). There were no significant between-group differences in change for salivary cortisol or psychological outcomes. However, the CBT group had significant within-group improvements in perceived stress (p = .011), stress symptoms (p = .017), depression (p = .002), and anxiety (p = .006) from baseline to post-intervention, while the control group had no significant within-group change in the outcomes except for anxiety (p = .03). The significant improvements observed in the CBT group lasted for 6 months. No adverse effects were observed.ConclusionsIn this pilot trial, although between-group differences in change were not significant, CBT resulted in significant improvements in some psychological outcomes with no improvement in the control group. Our findings suggest the potential of the intervention to alleviate psychological distress in HF caregivers. Further examination in larger randomized trials is warranted.Trial registrationClinicalTrials.gov Identifier: NCT01937936 (Registered on 10/09/2013).

Enhancement of Aging in Place: An Evolving Understanding of Person-Centered Dementia Care in Home Settings.

There has been a rich body of literature on informal caregivers of persons with dementia (PWD). However, little has been discussed on how to facilitate person-centered dementia care in home settings with spouses as primary caregivers. We tend to take it for granted that spouses provide person-centered care for PWD. However, being spouses of PWD and living with them for several decades does not necessarily mean that it is easier for them to provide person-centered dementia care and maintain valued and healthy relationships. The current study aimed to explore dyadic experiences of PWD and their spousal caregivers and develop a culturally and contextually-sensitive understanding of person-centered dementia care in home-based settings. A total of 20 dyads of PWD and their care partners were selected for this study. A trained qualitative interviewer conducted a one-on-one interview with each participant with dementia and their care partners separately. We adopted both conventional and directed content analyses. Our findings provide examples of care partners provide person-centered care, resulting in a profound positive impact on their wellbeing. Adaptive leadership and collaborative work emerged as a key finding in facilitating person-centered dementia care. Cultural relevancy of person-centered dementia care was also interpreted from the data. The study findings provide implications for the evolving of person-centered dementia care model in home-based settings. Findings from this study highlight the significance of facilitating person-centered dementia care in home-based settings between PWD and their primary family caregivers.

Factors associated with family caregiver burden among frail older persons with multimorbidity

IntroductionSingapore is facing an ageing population and the care needs of the population will increase in tandem. A segment of this population would be living with multimorbidity and frailty. Frailty is defined as an age-related state characterised by reduced strength and physiologic malfunctioning. Multimorbidity refers to the coexistence of multiple chronic conditions in an individual. Older adults are more likely to have frailty and multimorbidity, and this would increase the burden of their caregiver. Our study aimed to determine the prevalence of caregiver burden for primary family caregivers of frail older adults with multimorbidity. We also investigated the factors that were associated with primary family caregiver burden.MethodsThis was an interviewer-administered, cross-sectional study of primary family caregivers of frail older patients with multimorbidity that was conducted in two National Healthcare Group polyclinics. Convenience sampling was used. The 12-item Zarit Burden Index (ZBI) was used to assess primary family caregiver burden. The scores of the ZBI range from 0 to 48, with a score of 10 or above indicating that the primary family caregiver perceives burden. Descriptive statistics were used to provide information regarding the caregivers and the care recipients. Multivariable logistic regression was used to investigate the factors affecting primary family caregiver burden.ResultsOne hundred eighty-eight family caregivers were interviewed and 71.8% of them perceived burden on the ZBI. 59.6% were caregivers to their parents and 18.1% of them had multimorbidity. Almost two-thirds of the caregivers interviewed were female. After adjusting for other factors via multivariable analysis, the ethnicity of the caregiver and the increase in time spent caregiving per week were the two factors positively associated with family caregiver burden. A Chinese primary family caregiver had almost three times the odds of perceiving burden when compared to a non-Chinese primary family caregiver.ConclusionCaregiver burden was high amongst primary family caregivers of frail older adults with multimorbidity. Being a Chinese primary family caregiver compared to non-Chinese ethnic groups as well as being a primary family caregiver who spent increased time caregiving per week were the two factors positively associated with family caregiver burden. Further exploratory, qualitative studies can be done to find out the reasons to Chinese primary family caregivers being more burdened compared to the non-Chinese primary family caregivers. In addition, the specific factors related to increased time caregiving per week and family caregiver burden can also be studied.

The Lived Experience of Primary Family Caregivers of Patients on Hemodialysis Treatment in Southern Ethiopia: A Phenomenological Study.

BackgroundPrimary family caregivers of hemodialysis patients are the “hidden patients” who shoulder extraordinary care burdens. However, there is a dearth of studies in Ethiopia. The purpose of this study was to explore the lived experience of primary family caregivers of hemodialysis patients in Southern Ethiopia.MethodsQualitative phenomenological study design was employed in February 2021. A homogeneous purposive sampling technique was applied to select study participants. An in-depth interview using an interview guide and field notes were used to collect the required data. All interviews were recorded using a digital audio recorder. Data coding was assisted by Open code software version 4.03. Inductive thematic analysis was used to develop the emerged themes and sub-themes using Colaizzi’s 1978 seven-step phenomenological analysis method. The themes and sub-themes are described in detail in the respective heading and sub-headings.ResultsA total of twelve participants were involved in the present study. Bio-psychological experience, socio-economic impact, and healthcare provider-primary family caregiver relationships are the major themes that emerged from the data. The emotional responses, coping mechanisms, consequences on the family caregivers’ health, care fatigue, lifestyle change, economic burden, impact on social responsibility, social support, the role of the primary family caregiver, and trust and confidence in the service providers are the sub-themes defining primary family caregivers caring experience.ConclusionIn this study, emotional instabilities and reactions, care fatigue, distortion of caregiver’s health, multiple economic and social damages are the major challenges faced by primary family caregivers.

Cognitive-Behavioral Dementia Caregiving Styles: Associations With Care Stress and Well-Being

Associations between behavioral and psychological symptoms of dementia (BPSD), caregiver burden, and depressive symptoms are well-established, and these constructs are often targeted in interventions. Increasingly, dementia caregiver interventions are informed by mindfulness- and acceptance-based approaches, such as Acceptance and Commitment Therapy (ACT). In addition to standard outcomes, like burden and depressive symptoms, these interventions/therapies seek improvements in individuals’ psychological flexibility (e.g., cognitive defusion, present moment awareness, values-based living). Less is known how these constructs interact within well-established caregiver stress processes. We examined a moderated mediation model (N=161 dementia caregivers; PROCESS Procedure; SPSS Release 2.16.1), with BPSD frequency (Revised Memory and Behavior Problems Checklist) predicting depressive symptoms (10-item CES-D), mediated via caregiver burden (short Burden inventory). The moderator was the Values Questionnaire (Progress scale), and we controlled for gender, caregiver duration, age, income, and education. Results revealed that the indirect effect of BPSD on depressive symptoms through caregiver burden was weakened through higher progress toward values (moderated mediation significant at p<.05). In essence, greater levels of living according to values dampened the effect of BPSD on depressive symptoms, through care-related burden. These findings are important because caregivers often cannot leave this role, requiring them to learn to live with the caregiving role in healthy ways. Value-based living and committed action toward values signify caregivers’ success at balancing care-related stress with other priorities, and psychologically adjusting to difficulties. Interventions that emphasize values-based living, like ACT, have promise for caregivers, offering healthy ways to psychologically adjust to, and live with, the experience.

Cognitive-Behavioral Dementia Caregiving Styles: Associations With Care Stress and Well-Being

Some caregivers of persons with Alzheimer’s Disease and related dementias (ADRD) are known to be under high levels of burden, which is associated with higher levels of anxiety, depression, and stress. Previous research has established anxiety, depression, and stress are associated with binge drinking, but little research has examined binge drinking rates among ADRD caregivers. Binge drinking could influence the ability of ADRD caregivers to provide care. The purpose of this study was to explore the prevalence and prevalence correlates of binge drinking among ADRD caregivers using the 2019 Behavior Risk Factor Surveillance Survey (BRFSS). We identified N = 1,642 persons who were the primary informal caregivers of a person with ADRD. Among them, the prevalence of binge drinking was 14 per 100 persons. Bivariable analyses suggested male caregivers and caregivers with 14 or more days of poor mental health in the past 30 days had the highest prevalence of binge drinking at 18 per 100 persons. Caregivers who were 65 or older or had the lowest prevalence at 3 per 100 persons. Caregiving characteristics revealed providing 20 to 39 hours of care per week had the highest prevalence of binge drinking (17 per 100) whereas spousal caregivers (9 per 100) had the lowest prevalence. Smoking status and hours per week providing care were associated with higher odds of binge drinking in multivariable analyses. Future research should examine if binge drinking by ADRD caregivers is related caregiver burden and the quality of care provided to the persons with ADRD.

Evaluation of the Reliability and Validity of the Alzheimer’s Disease-Related Quality of Life Instrument among Older Adults with Cognitive Impairment in Mainland China

ABSTRACT The purpose of this study is to examine the reliability and validity of the ADRQL instrument among older adults with cognitive impairment in mainland China. Three hundred older adults with cognitive impairment and their primary family caregivers from Wuhan participated in structured interviews. Cronbach’s α and Kuder–Richardson Formula 20 were used to examine internal consistency reliability. Confirmatory factor analysis, Heterotrait-Monotrait ratios, and ordinary least square regression were used to assess the factorial validity, discriminant validity, and criterion validity. The ADRQL had acceptable reliability and validity, which can be used to assess overall quality of life for this population.

Family Caregivers and Caregiving Buren of Cancer Patients Khartoum State 2020

Introduction: Advances in cancer diagnosis and treatment have resulted in an increase in the prevalence and a longer life expectancy. A cancer patient's family caregiver is one of the most important components of the patient's wellbeing. Consequently, family members have been identified as co-sufferers in the fight against malignant disorders. Materials and Methods: Observational cross-sectional study conducted at specialized oncology public outpatients’ clinics in Khartoum State, aimed at assessing caregiving burden among the primary family caregivers of cancer patients. To collect important data about both cancer patients and family caregivers, validated and structured questionnaires and a checklist were used. A systematic random sample was used to enrol 143 caregivers for cancer patients. Results: Cancer patients were frequently females (56.6%), with 32.2 percent being between the ages of 51 and 65. Breast cancer and leukaemia were the most common kinds of cancer among individuals, accounting for 11.9 percent each. In terms of family caregivers, 54.5 percent were females with an average age of (37.7) years. Approximately half of them were cancer patients' offspring. The majority of family caregivers were married and had received secondary and/or basic education. Mean cumulative caregiver reaction assessment score was 39.8 out of 60, which revealed considered degree of sensible caregiving burden. Having more children and lower educational level were related positively to estimated caregiving burden. Conclusion: Findings point to high proportions of raised level of caregiving burden. Some family caregivers’ characteristics have a role as determining factors in generating family caregiver burden.

Factors associated with depression and anxiety among caregivers of patients with atrial fibrillation.

To assess the prevalence and associated factors of depression and anxiety among caregivers of patients with atrial fibrillation. Depression and anxiety are common in caregivers of patients with cardiovascular diseases, including heart failure and coronary artery disease. However, studies about depression and anxiety among caregivers of patients with atrial fibrillation are limited. Cross-sectional study. We enrolled 465 dyads of patients with atrial fibrillation and their primary family caregivers from Beijing Anzhen Hospital between September 2020 and March 2021. The patient-caregiver dyads were excluded if primary family caregivers had previous mental disorders before the patient diagnosis of atrial fibrillation. Depression and anxiety of patients and caregivers were measured by Patient Health Questionnaire-9 and Generalized Anxiety Disorder-7scale. Multivariate logistic regression analysis was used to assess factors associated with depression and anxiety of caregivers. STROBE guidelines were followed to report this study. The prevalence of caregiver depression (Patient Health Questionnaire-9score ≥5) and anxiety (Generalized Anxiety Disorder-7score ≥5) was 14.0% and 13.5% respectively. Caregiver number of comorbidities ≥2 and patient depression were significantly associated with caregiver depression. Caregiver age ≥65years, caregiver female sex and patient anxiety were predictors of caregiver anxiety. Depression and anxiety are common in caregivers of patients with AF. Better management of caregiver mental problems and associated factors may benefit both patients and caregivers. Clinicians and nurses should pay more attention to depression and anxiety in caregivers of patients with atrial fibrillation, and provide support to caregivers in most need.