Relationships between family resilience,breast cancer survivors’ individual resilience,and caregiver burden: A cross-sectional study

BackgroundCaregivers of breast cancer survivors experience various types of burden, which in turn is linked to patients’ physical and psychological status. Family resilience might be able to decrease caregiver burden and facilitate survivors’ individual resilience, and individual resilience might be related to caregiver burden. Nevertheless, these relationships have not yet been confirmed.ObjectiveTo determine the relationships between family resilience, breast cancer survivors’ resilience, and principal caregivers’ caregiver burden, as well as determine whether breast cancer survivors’ individual resilience plays a mediating role in the relationship between family resilience and caregiver burden.DesignCross-sectional study design.SettingThe comprehensive cancer center of a public hospital in Shandong Province, China.ParticipantsThe sample comprised 108 dyads of early-stage breast cancer survivors and their principal caregivers.MethodsThe principal caregivers completed the Shortened Chinese Version of the Family Resilience Assessment Scale and the Chinese Version of the Zarit Caregiver Burden Interview, while the breast cancer survivors completed the 10-item Chinese version of the Connor-Davidson Resilience Scale and provided their sociodemographic information. The mediating effect of individual resilience was estimated using the bootstrap method via IBM SPSS Amos 21.0.ResultsCaregiver burden was significantly negatively associated with both family resilience and breast cancer survivors' individual resilience (both p < .01). Furthermore, individual resilience mediated the relationship between family resilience and caregiver burden (b = −0.052; 95% confidence interval: −.412, −.036).ConclusionsThe findings suggest that both family resilience and breast cancer survivors’ individual resilience may ease caregiver burden among the principal caregivers of breast cancer survivors, and family resilience tends to promote the survivors’ individual resilience. Therefore, family resilience and survivors’ individual resilience should be enhanced for breast cancer survivors and their family to ease the principal caregivers’ caregiver burden.     

老年痴呆患者家庭照顾者的心理弹性及其影响因素

目的了解老年痴呆患者家庭照顾者的心理弹性水平,并分析其影响因素。方法采用方便抽样法选取2015年11月至2016年5月在武汉某三级甲等医院神经科记忆门诊就诊、神经科病房住院治疗以及在湖北省痴呆与认知障碍医学研究中心照顾者网络平台登录的180例患者及其照顾者为研究对象。采用自行设计的一般情况调查表、康纳-戴维森韧性量表、领悟社会支持量表对其进行调查。结果老年痴呆患者家庭照顾者的心理弹性总分为(24.83±7.58)分;老年痴呆患者的照顾者自觉健康状况、朋友支持、患者的病情程度、照顾者的文化程度及其他支持是老年痴呆患者家庭照顾者心理弹性的影响因素(均P0.05),共解释老年痴呆患者家庭照顾者心理弹性的44.8%。结论老年痴呆患者家庭照顾者的心理弹性水平处于中等偏低的水平,照顾者的自觉健康状况、朋友支持、患者的病情程度、照顾者的文化程度以及其他支持是影响照顾者心理弹性水平的重要因素。提示医护人员可有针对性地给予心理支持和干预,提高照顾者的心理弹性水平,改善其心理健康状况。     

Effect of integrated caregiver support on caregiver burden for people taking care of people with cancer at the end of life: A cohort and quasi-experimental clinical trial

BackgroundPrevious studies have shown small-to-medium effects of support on reducing the caregiver burden for advanced cancer patients. A dearth of studies utilized longitudinal design to examine and evaluate the effect of support for the caregiving burden till the patient's death.ObjectivesTo test the ability of an integrative intervention program for caregivers of advanced cancer patients to lower caregiving burden as death approaches.DesignA two-group comparative design with repeated measures.SettingTwo cancer wards of a single university hospital.ParticipantsAdvanced cancer patients (N = 81) and their caregivers were allocated into two groups: an experimental group (N = 40) receiving coping strategies, assistance, recourses, and education intervention and a control group (N = 41) receiving standard care.MethodsCaregivers received training in the caregiver support intervention at least 3 times every 2 weeks to help them reduce their caregiving burden. Subjective (Caregiver Reaction Assessment) and objective (Heart Rate Variability) measures of caregiver burden were evaluated for caregivers of patients approaching death. Only data within 3 months before the patients’ death were analyzed.ResultsCaregiver self-efficacy significantly increased and the subjective caregiving burden significantly decreased in the experimental group as patients’ death approached. Heart Rate Variability also indicated a calming effect of the intervention, helping caregivers face patients’ death.ConclusionsThe caregiver support intervention can increase caregiver self-efficacy and reduce the subjective caregiving burden. Heart Rate Variability parameters have the potential to be useful for monitoring caregiver burden in facing patients’ death.     

Economic and social changes among distressed family caregivers of lung cancer patients

Purpose

Although costs of lung cancer care have been documented, economic and social changes among lung cancer patients’ family caregivers have yet to be fully examined. In addition, research has not focused on caregivers with greater need for support services. This study examined various economic and social changes among distressed family caregivers of lung cancer patients during the initial months of cancer care in the USA.

Methods

Lung cancer patients’ primary family caregivers with significant anxiety or depressive symptoms were recruited from three medical centers within 12 weeks of the patient’s new oncology visit. Caregivers (N?=?83) reported demographic and medical information and caregiving burden at baseline. Seventy-four caregivers reported anxiety and depressive symptoms and economic and social changes 3 months later.

Results

Seventy-four percent of distressed caregivers experienced one or more adverse economic or social changes since the patient’s illness. Common changes included caregivers’ disengagement from most social and leisure activities (56 %) and, among employed caregivers (n?=?49), reduced hours of work (45 %). In 18 % of cases, a family member quit work or made another major lifestyle change due to caregiving. Additionally, 28 % of caregivers reported losing the main source of family income, and 18 % reported losing most or all of the family savings. Loss of the main source of family income and disengagement from most social and leisure activities predicted greater caregiver distress.

Conclusions

Findings suggest that distressed caregivers of lung cancer patients experience high rates of adverse economic and social changes that warrant clinical and research attention.     

肺癌住院患者主要照顾者的负担与社会支持的相关性

目的了解肺癌住院患者主要照顾者的负担与社会支持状况,探讨两者的相关性。方法 2012年2-4月,便利抽样法抽取西安市3所三级甲等医院病理诊断确诊为肺癌的住院患者的主要照顾者150名,采用照顾者负担量表(Zarit burden interview,ZBI)、社会支持评定量表(social support rating scale,SSRS)进行问卷调查。结果肺癌患者主要照顾者的负担处于轻度水平,社会支持处于中等水平;负担总得分为(31.51±10.24)分;社会支持总分为(31.25±6.15)分,低于全国常模。主要照顾者负担各维度与主观支持、客观支持、社会支持利用度均呈负相关(P<0.01)。结论肺癌患者主要照顾者普遍存在不同程度的照顾负担;其获得的社会支持越高,则负担越轻。     

Family caregivers of patients with frontotemporal dementia: An integrative review

ObjectivesThe purpose of this integrative review is to: (1) identify the characteristics of family caregivers of patients with frontotemporal dementia, (2) explore the impact of providing care on family caregivers’ health and well-being, and (3) identify coping strategies used by family caregivers.BackgroundFrontotemporal dementia is thought to be the second most common form of dementia after Alzheimer's disease. Family caregivers of patients with frontotemporal dementia face unique challenges due to its early onset, behavioral symptoms, and slow progression of decline. However, there is a dearth of research evaluating the health and wellbeing of family caregivers of patients with frontotemporal dementia.Design and data sourcesAn integrative review was conducted using the Whittemore and Knafl methodology. An electronic search of the literature was conducted using four electronic databases: PubMed, Embase, CINAHL, and Web of Science. The Crowe Critical Appraisal tool was used to evaluate the quality of the selected articles.ResultsFindings of 11 articles informed this integrative review. Family caregivers of patients with frontotemporal dementia identify behavioral disturbances as most troubling. Spouses and female caregivers experience greater caregiver burden, distress, increased rates of depression, as well as decreased sleep related to behavior disturbances. Though less explored, providing care to those with behavioral disturbances may also impact caregiver physical health. Additionally, female caregivers are most likely to employ coping strategies, most commonly, adaptation and reframing. Effective interventions to reduce family caregiver burden are poorly understood but family caregivers suggest education and internet-based support groups are most helpful.ConclusionsFamily caregivers of patients with frontotemporal dementia experience significant distress, which impacts their health and wellbeing. It is important for healthcare providers who care for patients with frontotemporal dementia to recognize the unique needs of family caregivers. Future research should focus on examining interventions and strategies to reduce caregiver burden.     

Mitigating distress and promoting positive aspects of caring in caregivers of children and adolescents with schizophrenia: Mediation effects of resilience,hope, and social support

Assistance for distressed caregivers can indirectly facilitate recovery of the people being cared for, yet how resilience, hope, and social support mediate between caregiving burden and adjustment outcomes is unclear. A structural equation model was constructed based on data from a cross‐sectional survey of 324 caregivers of children and adolescents with schizophrenia using multidimensional caregiver burden inventory, Connor‐Davidson resilience scale, Herth hope index, perceived social support scale, distress management screening measure, and positive aspects of caregiving instruments. On distress, caregiving burden had a relatively large direct effect, and an indirect effect, mainly mediated by resilience. Resilience had a greater effect than social support or hope on distress. On positive aspects of caregiving (PAC), caregiving burden had only an indirect effect, primarily via the processes from social support and resilience to hope. Hope had a significant direct effect, while resilience and support had moderate indirect effects on PAC via hope. Resilience is an important mediator between caregiving burden and distress, with a greatest effect. Resilience, hope, and social support all mediated between caregiving burden and PAC, with hope having a greatest effect. Reducing the care burden may greatly help to relieve caregiver distress. Providing needed social support, encouraging caregivers to proactively utilize the support, and enhancing resilient coping skills will be helpful in developing resilience and mitigating distress. Health professionals should assess and ameliorate burden, be particularly aware of caregiver hopes, provide formal support, and encourage informal support to promote PAC.     

Effects of a Nurse-led Survivorship Care Program on the Health and Resilience of Primary Caregivers of Patients With Advanced Head and Neck Cancer: A Randomized Controlled Trial

ObjectivesThe present study aimed to evaluate the effects of a nurse-led survivorship care program (SCP) on emotional distress, social support, physical health, mental health, and resilience in primary caregivers of patients with advanced head and neck cancer.Data SourcesA randomized controlled trial was conducted. One hundred patient-primary caregiver dyads were randomized into the nurse-led SCP group (experimental) or the usual care group (control). Participants completed a self-reported questionnaire, including measures of emotional distress, social support, physical health, mental health, and resilience. After 6 months, the experimental group reported a significant improvement in emotional distress, social support, physical health, mental health, and resilience. Compared with the control group, measures of emotional distress, physical health, overall resilience, and the resilience aspects of equanimity and perseverance improved in the experimental group.ConclusionAn SCP may feasibly help alleviate emotional distress, improve social support, increase physical and mental health, and strengthen resilience in the primary caregivers of patients with head and neck cancer. Health care providers should encourage primary caregivers to join an SCP.Implications for Nursing PracticeThe nurse-led SCP can be applied before patients complete treatment, which may increase the positive effect on physical health and adaptation.     

Factors predicting the health status of caregivers of stroke survivors: A cross‐sectional study

In this cross‐sectional study, we aimed to determine factors influencing the health status of caregivers of stroke survivors. A total of 126 caregivers of stroke survivors were recruited from three outpatient clinics in Thai Nguyen National General Hospital, Vietnam, from November 2016 to March 2017. Data were collected through six instruments: a demographic questionnaire, the Modified Barthel Index, the Zarit Burden Interview Scale, the Multidimensional Scale of Perceived Social Support, the Family Caregiver Conflict Scale, and the Short Form‐36 Health Survey. Stepwise multiple regression was employed to analyze the data. Caregiver burden, patient's functional status, caregiver's age, and social support together explained 80.3% of the variations in health status of caregivers of stroke survivors. Caregiver burden was the strongest predictor of health status of these caregivers. Based on the findings, nurses should take caregiver's age, functional status of stroke survivors, caregiver burden, and social support into consideration when preparing family caregivers to provide care for stroke survivors. To reduce perceived caregiver burden, family support interventions should be embraced to enhance health status of the caregivers of stroke survivors.     

中青年恶性肿瘤生存者配偶家庭适应性现状及影响因素研究

目的：探讨中青年恶性肿瘤生存者配偶家庭适应性现状及其影响因素,为增强其家庭适应能力提供理论依据。方法：采用一般资料调查表、中文版家庭适应性量表、家庭复原力评定量表及ZBI照顾者负担量表对282名中青年恶性肿瘤生存者的配偶进行调查。结果：中青年恶性肿瘤生存者配偶的家庭适应性得分中位数为54(49,58)分;家庭复原力得分为（199.05±21.26）分;照顾负担得分中位数为27(17,41)分。中青年恶性肿瘤生存者配偶的家庭适应性与家庭复原力呈正相关（r=0.584,P<0.001）,与照顾负担呈负相关（r=-0.284,P<0.001)。多元线性回归分析结果显示,家庭复原力的2个二阶维度即家庭信念和家庭力量、肿瘤生存者职业(无固定职业)、肿瘤生存者疾病类型(肺部肿瘤、头颈部肿瘤)及家庭人均月收入可共同解释肿瘤生存者配偶家庭适应性的57.2%的变异量。结论：中青年恶性肿瘤生存者配偶的家庭复原力可影响其家庭适应性,建议医护人员注重提升中青年肿瘤生存者配偶的家庭复原力,帮助其积极寻求解决问题的方法,调动家庭内部沟通、合作协调能力,保持家庭生活秩序及家庭成员间的亲密度,关注配偶的照...     

Dealing With the Unthinkable: Bladder and Colorectal Cancer Patients’ and Informal Caregivers’ Unmet Needs and Challenges in Life After Ostomies

ObjectivesWe examined patient and informal caregiver unmet needs to identify areas for targeted supportive care interventions and programs to enhance both patient and informal caregiver experience.Data SourcesA total of 30 patients who underwent ostomy surgeries for bladder or colorectal cancers and 13 informal caregivers participated in the study. Patients were enrolled at the Icahn School of Medicine at Mount Sinai between 2017 and 2018. Qualitative data were collected by individual interviews, audiotaped, and transcribed verbatim. Transcribed data were iteratively analyzed using Atlas.ti to explore patient and caregiver unmet needs.ResultsPatients and informal caregivers reported having insufficient psychological preparation for ostomy surgeries, and very limited hands-on training on stoma care and utility of stomal appliances. Unmet psychological needs related to depression, anxiety, and distress caused by changes in body image and sexual, urinary, and bowel function were reported. Patients and caregivers also reported significant patient medical needs in the acute postoperative period including pain, fatigue, sleep disturbance, inflammation, and complications resulting in hospital readmissions. Colorectal cancer patients specifically experienced significant challenges with changes in diet and nutrition that contributed to ostomy care burden. Both patients and caregivers recommended seeking psychological and social support to enhance both patient and caregiver emotional adjustment to life after ostomies.ConclusionMeeting patient and informal caregiver unmet informational and supportive care needs is imperative to improve their quality of life and adjustment.Implications for Nursing PracticeAn effective supportive care plan should be designed and utilized in clinical care to improve ostomy patients’ and caregivers’ outcomes.     

Impact of caregiving on Finnish family caregivers

Scand J Caring Sci; 2012; 26; 211–218 Impact of caregiving on Finnish family caregivers Background: Numerous studies have examined the caregiver burden that family caregivers often experience. However, caregiving situations may also include positive elements that have recently received greater research attention. Aim: The aim was to examine the positive value and negative impact of caregiving for the family caregiver. Method: Caregiving experience was measured with the modified 15‐item Carers of Older People in Europe Index. Surveys were completed by family caregivers at the baseline and after 6 months. Results: At the baseline, most family caregivers thought that caregiving was worthwhile, had a good relationship with the person they cared for and coped well as a caregiver. Fifty‐five per cent of the respondents did not feel trapped in their caregiver role, though a third did, and a majority found caregiving to be too demanding. Most perceived themselves to be supported by their family, while 40% did not feel supported by health and social services. During the 6‐month study period, the negative impact score declined, and the scores for positive value and quality of support improved. The care recipient’s management at home (p < 0.001) was the single best predictor of the negative impact on the family caregiver; the family caregiver’s older age (p < 0.01) best predicted the quality of support; and the family caregiver’s good relationship with the care recipient (p < 0.01) best predicted the positive value of caregiving. Conclusions: The study indicated that even if the health status of the care recipient dramatically worsened, the family caregiver’s experiences of caregiving became more positive. This is because family caregiving was perceived to be worthwhile, most family caregivers had a close relationship with the person they cared for and they received support from their family. Interventions that focus on family caregivers’ positive experiences of caregiving would be important in protecting them from the negative consequences of caregiving.     

1型糖尿病患者主要照顾者负担水平与其社会支持状况的相关性研究

目的：调查1型糖尿病（T1DM）患者照顾者负担水平与社会支持状况及两者相关性。方法：采用一般资料问卷、照顾者负担量表及社会支持评定量表对65例T1DM患者照顾者进行问卷调查。结果：T1DM患者照顾者负担总分为（33.0±14.9）分,仅13.8%的照顾者无照顾负担;社会支持总分为（35.6±6.6）分,绝大多数（95.4%）照顾者社会支持尚未达到高水平。总社会支持水平与总负担及负担各维度呈显著负相关（P〈0.05）;主观支持维度与总负担及负担各维度呈显著负相关（P〈0.05）;客观支持维度与总负担及角色负担维度呈显著负相关（P〈0.05）。结论：T1DM患者照顾者普遍存在不同程度的照顾负担,社会支持多处于中低水平;所获社会支持程度越高,感知的照顾者负担越轻。护理人员应给予照顾者恰当的社会家庭支持及相关知识的指导,减轻其身心负担,使其能更有效地承担照顾患者的责任,优化患者疾病控制情况。     

Effectiveness of a strength-oriented psychoeducation on caregiving competence,problem-solving abilities,psychosocial outcomes and physical health among family caregiver of stroke survivors: A randomised controlled trial

BackgroundFamily caregivers provide the foundation for long-term home care of stroke survivors. The overwhelming stress associated with caregiving hinders the ability of family caregivers to utilise their internal and external resources to cope with this situation, thereby placing their own health at risk. We conducted a randomised controlled trial of a strength-oriented psychoeducational programme on conventional stroke rehabilitation for family caregivers.ObjectivesTo evaluate the effectiveness of a strength-oriented psychoeducational programme on the caregiving competence, problem-solving coping abilities, caregiver’s depressive symptoms, caregiving burden and resources (family functioning, social support) and physical health (such as caregiving-related injury), as well as potential placement of stroke survivors.DesignA prospective multi-centre and single-blinded randomised controlled trial stratified by survivors’ history of stroke.Setting and participantsAdult stroke patients and their family caregivers were recruited from the medical wards of a regional acute and two rehabilitation hospitals in the Eastern New Territories of Hong Kong.MethodsThe design of the trial was based on the relational/problem-solving model. Family caregivers of stroke survivors who had been admitted to the study hospitals completed a set of questionnaires before randomisation, immediately, one- and three-months post-intervention. The control group received usual care, whereas the intervention group received an additional 26-week strength-oriented psychoeducational programme (two structured individual face-to-face pre-discharge education sessions on stroke and its associated caregiving skills and six biweekly post-discharge telephone-based problem-solving coping skills training sessions). Data were analysed using the generalized estimating equation and multiple regression models and chi-square tests.ResultsWe recruited 128 caregiver–survivor dyads. The intervention group demonstrated significantly greater improvements throughout the study (p < 0.01) in terms of caregiving competence, problem-solving coping abilities and social support satisfaction. This group also displayed significantly greater improvements in terms of family functioning (p < 0.05) at one-month post-intervention, an increased number of social support (p < 0.001) and a lower level of burden at three-month post-intervention. However, there was no significant effect on enabling stroke survivors to remain in their home. Post-hoc analysis showed a significant and indirect effect of problem-solving coping abilities, which suggested its mediating effect on caregiving competence of stroke caregivers.ConclusionsFindings suggest that incorporating a strength-oriented psychoeducational programme into the existing stroke rehabilitation protocol can foster a healthy transition to caregiving among family members of stroke survivors.     

肺癌晚期患者照顾者负担状况及其影响因素分析

目的探讨肺癌晚期患者家庭照顾者负担状况及其影响因素。方法采用一般资料问卷和Zarit照顾者负担量表,对2009年12月至2010年10月住院治疗的肺癌晚期患者家庭照顾者227例进行调查。结果肺癌晚期患者家庭照顾者负担总分为(29.79±13.89)分,184例(76.7%)照顾者存在照顾负担,其中轻度负担者占53.7%。女性照顾者负担高于男性,家庭经济状况好者负担低于经济状况不好者,身体健康状况好者负担低于身体健康状况不好者,文化水平高的照顾者负担高于文化水平低者。结论肺癌晚期患者家庭照顾者普遍存在照顾负担,负担程度以轻度为主;照顾者性别、家庭经济状况、身体状况、文化水平等因素影响照顾者负担水平。