What are we doing to support informal caregivers? A scoping review of caregiver education programs in cancer care

ObjectivesThe cancer system is experiencing a rise in cancer prevalence, a workforce shortage, and is resource-stretched. In this environment, informal caregivers (unpaid family caregivers of cancer patients) are required to take on expanded care roles and experience the debilitating effects of caregiver burden. Education programs are increasingly being developed to support caregivers. The aim of this review is to summarize what is known about these programs.MethodsA scoping review was conducted from May 2019 to January 2020. The literature search yielded 34,906 articles.Results119 articles were included, and ninety-two (77%) were focused on in-person psychoeducational programs.ConclusionMost caregiver programs have a unidimensional focus on psychoeducational training, demonstrating a need for more comprehensive programming to address the full spectrum of caregiver needs.Practice implicationsClinicians and educators must collaborate to create accessible, equitable education programs that comprehensibly address the needs of unpaid family caregivers beyond addressing psychological aspects of cancer care. This will ensure that a broader range of patients and caregivers are equipped with the knowledge and skills needed to cope with a cancer diagnosis, navigate the health system and to maintain their quality of life.     

What Does the Informal Caregiver of a Terminally Ill Cancer Patient Need? A Study from a Cancer Centre

Aims:

To assess the needs of informal caregivers of terminally ill cancer patients.

Materials and Methods:

Fifty four informal caregivers of patients registered in our palliative care service were interviewed 3–6 months after the death of the patient with the help of a semistructured questionnaire covering the physical, medical, psychological, social, and information domains.

Results:

Most of the caregivers were middle aged and had no prior experience of care giving. The caregivers were satisfied by the information and medical support provided to them by their treatment team. Most had an “emergency plan”. Caregivers had unmet needs including homecare, psychological support, and financial help.

Conclusions:

informal caregivers provide most of the nursing and psychological support to the patient. However, palliative care services need to recognize that the caregiver too may need psychological and technical support.     

Factors determining the impact of care-giving on caregivers of elderly patients with dementia. A systematic literature review

Introduction

Dementia caregivers suffer a considerable care burden. More than in comparable groups of caregivers or peers, they are confronted with feelings of depression and decreased physical health. Although many studies are set up to determine the link between the stressors in dementia care-giving and the impact on the family caregiver, the results remained inconclusive. Others, depression in caregivers remains the main cause of a premature or acute ending of home care.

Method

The aim of this systematic literature review was to analyse what factors determine the development of depression in caregivers of elderly patients with dementia. Depression was taken as primary outcome as it is shown to be the main reason for caregivers to abandon home care.

Results

Depression occurs in one in three of caregivers and it occurs more frequently in those who care for patients with dementia than in caregivers of patients with other chronic illnesses.

Conclusion

Caregiver characteristics rather than objective care needs of the patients tend to be responsible for the onset of depression. Future research should concentrate on demonstrating links between negative feelings in caregivers and the way the care situation evolves. This can have important implications in home care support.     

A Conceptual Framework and Key Research Questions in Educational Needs of Blood and Marrow Transplantation Patients,Caregivers, and Families

Patient, caregiver, and family education and support was 1 of 6 key areas of interest identified by the National Marrow Donor Program/Be The Match 2-year project to prioritize patient-centered outcomes research (PCOR) goals for the blood and marrow transplantation (BMT) community. PCOR focuses on research to help patients and their caregivers make informed decisions about health care. Therefore, each area of interest was assigned to a working group with broad representation, including patients, caregivers, and clinicians. Each working group was charged with identifying gaps in knowledge and making priority recommendations for critical research to fill those gaps. The report from this working group presents a conceptual framework to address gaps in knowledge regarding patient and caregiver education in BMT and recommendations for priority research questions on this topic.     

消化道肿瘤手术患者照顾者照护知识需求调查及影响因素分析

目的 了解消化道肿瘤手术患者照顾者照护知识需求情况,分析影响照顾者照护知识需求的相关因素。方法 方便抽样选取上海市某三甲医院2018年10月1日~2019年4月30日普通外科病房收治的消化道肿瘤手术患者照顾者作为研究对象,通过自设问卷,收集患者及照顾者基本信息,使用《外科手术患者主要照顾者照护需求问卷》调查出院后照顾者的照护知识需求水平和特征。通过单因素和多因素分析影响照顾者照护知识需求水平的相关因素。结果 ①共发放问卷198份,回收有效问卷198份。②消化道肿瘤患者年龄（63.60±9.70）岁,平均住院时间（15.15±4.67）d。照顾者年龄（48.45±12.37）岁,既往有照护经历者122人（61.62%）,照顾者平均每日间接经济损失（411.66±625.87）元。③消化道肿瘤手术患者照顾者照护知识需求排名前三的条目分别为“需要了解患者可能出现的不适及应对方法”“需要了解出现异常情况的一些迹象”及“需要了解患者饮食调理的相关知识”。多因素分析显示,照顾者年龄、是否有照护经历、照顾者身体状况、患者术前是否需要长期照护、照顾者人数及住院期间是否聘请护工为照顾者照护知识需求水平的主要影响因素。结论 临床护士在工作中应重视消化道肿瘤照顾者的照护知识需求,针对不同患者和照顾者,制定更加合理的宣教方案和出院计划,落实延续护理,促进患者康复。     

Designing family-based interventions in kidney failure: The perspectives of the triad 'patients on haemodialysis/family caregivers/healthcare professionals

Objectives

This study explored the perspectives of people undergoing in-centre haemodialysis, family caregivers, and healthcare professionals about the development and implementation of family-based interventions in renal care settings.

Design

A qualitative exploratory study was carried out combining purposive and snowball sampling techniques.

Methods

Semi-structured interviews were submitted to thematic analysis.

Results

A total of 82 individuals (27 adults on haemodialysis, 32 family caregivers, and 23 healthcare professionals) participated in this study. Five major themes were identified: (i) educational needs (improve disease and treatment-related knowledge; acquire better clarification on dialysis-related health behaviours); (ii) support needs (easier access to available community resources and professional psychological support; additional emotional and instrumental support from family members); (iii) expected barriers (concerns about participating in a group format; availability of the person on haemodialysis/family caregiver dyad; travel to the intervention site and associated costs); (iv) expected benefits (mutual emotional validation and support; improve family coping skills and involvement); and (v) preferences for content and format (interdisciplinary and moderated by health psychologists) and timing of the intervention (weekends and/or non-dialysis days).

Conclusions

Findings suggested that interventions focused on the family system in kidney failure need to follow an interdisciplinary approach, combining psychosocial support with an educational component. Future research is needed to minimize barriers to the conjoint participation of the person on haemodialysis/caregiver dyad. This study identifies important intervention goals to inform the design of family-based interventions for people receiving haemodialysis and their family caregivers.     

Older adults with chronic illness – Caregiver burden in the Asian context: A systematic review

IntroductionUpsurge in life expectancy, filial responsibility of caring, and healthcare advances have increased the older adult population in Asia. The last decade has witnessed nuclear families' proliferation in Asia, leaving family caregivers with more accountability and responsibility. This review explores the pattern of caregiver burden among caregivers of older adults with chronic illness in Asia.MethodsPRISMA guidelines serves as the framework for this systematic review. Studies from selected databases assessed caregivers' physical state, psychological dysfunction, and or burden as an outcome measure. The Newcastle - Ottawa Quality Assessment Scale appraised the quality of the selected studies.ResultsThe review included 12 research articles. Caregivers consistently report mild to a moderate burden. Care recipient with functional dependency, comorbidities, memory, and sleep impairments, escalate caregiver burden. Caregiver variables intensifying burden were advancing age, male gender, spouse as a care recipient, longer care provision duration, and no assistance.ConclusionOptimal levels of emotional well-being, significant family/social support, and self-preparedness among caregivers are grounds for their empowerment.Practical ImplicationsA paradigm shift from 'caregiver burden' to 'caregiver resilience' is advocated. Routine screening, preventive measures (skill-building and psychosocial empowerment), and restorative services (respite care and problem-based home visiting) for caregivers are forecasted.     

Home-based asthma education of young low-income children and their families

OBJECTIVE: To conduct a controlled trial of a home-based education program for low-income caregivers of young children with asthma. METHODS: Participants were randomized to treatment-eight weekly asthma education sessions adapted from the Wee Wheezers program (n = 49)-or usual care (n = 46). Baseline and 3- and 12-month follow-up data were gathered from caregivers and from children's medical records. RESULTS: Treatment was associated with less bother from asthma symptoms, more symptom-free days, and better caregiver quality of life at follow-up for children 1-3, but not those 4-6, years of age. Treatment and control groups did not differ in caregiver asthma management behavior or children's acute care utilization. CONCLUSIONS: This home-based asthma education program was most effective with younger children; perhaps their caregivers were more motivated to learn about asthma management. Targeting psychosocial factors associated with asthma morbidity might also enhance the efficacy of asthma education for these families.     

Palliative care for patients with Parkinson’s disease: study protocol for a mixed methods study

Background

Parkinson’s disease (PD) is a chronic, progressive neurological disorder with many intractable consequences for patients and their family caregivers. Little is known about the possibilities that palliative care could offer to patients and their proxies. Guidelines strongly recommend palliative care to improve the quality of life and – if needed – the quality of dying. However, providing palliative care to persons with PD involves specific challenges. For example, a timely initiation of palliative interventions is difficult because due to the gradually progressive nature of PD, there is often no clear marker for the transition from curative towards palliative care. Furthermore, there is little evidence to indicate which palliative care interventions are effective. Here, we describe the contours of a study that aims to examine the experiences of patients, (bereaved) family caregivers and professionals, with the aim of improving our knowledge about palliative care needs in PD.

Methods/design

We will perform a mixed methods study to evaluate the experiences of patients, (bereaved) family caregivers and palliative care professionals. In this study, we focus on Quality of Life, Quality of Care, perceived symptoms, caregiver burden and collaboration between professionals. In phase 1, we will retrospectively explore the views of bereaved family caregivers and professionals by conducting individual interviews and focus group interviews. In phase 2, 5–15 patients with PD and their family caregiver will be followed prospectively for 8–12 months. Data collection will involve semi-structured interviews and questionnaires at three consecutive contact moments. Qualitative data will be audio recorded, transcribed and analyzed using CAQDAS. If patients pass away during the study period, a bereavement interview will be done with the closest family caregiver.

Discussion

This study will offer a broad perspective on palliative care, and the results can be used to inform a palliative care protocol for patients with PD. By describing the experiences of patients, (bereaved) family caregivers and professionals with palliative care, this investigation will also establish an important ground for future intervention research.

     

Facilitating Out-of-Home Caregiving Through Health Information Technology: Survey of Informal Caregivers’ Current Practices,Interests, and Perceived Barriers

Background

Many patients with chronic conditions are supported by out-of-home informal caregivers—family members, friends, and other individuals who provide care and support without pay—who, if armed with effective consumer health information technology, could inexpensively facilitate their care.

Objective

We sought to understand caregivers’ use of, interest in, and perceived barriers to health information technology for out-of-home caregiving.

Methods

We conducted 2 sequential Web-based surveys with a national sample of individuals who provide out-of-home caregiving to an adult family member or friend with a chronic illness. We queried respondents about their use of health information technology for out-of-home caregiving and used multivariable regression to investigate caregiver and care-recipient characteristics associated with caregivers’ technology use for caregiving.

Results

Among 316 out-of-home caregiver respondents, 34.5% (109/316) reported using health information technology for caregiving activities. The likelihood of a caregiver using technology increased significantly with intensity of caregiving (as measured by number of out-of-home caregiving activities). Compared with very low intensity caregivers, the adjusted odds ratio (OR) of technology use was 1.88 (95% CI 1.01-3.50) for low intensity caregivers, 2.39 (95% CI 1.11-5.15) for moderate intensity caregivers, and 3.70 (95% CI 1.62-8.45) for high intensity caregivers. Over 70% (149/207) of technology nonusers reported interest in using technology in the future to support caregiving. The most commonly cited barriers to technology use for caregiving were health system privacy rules that restrict access to care-recipients’ health information and lack of familiarity with programs or websites that facilitate out-of-home caregiving.

Conclusions

Health information technology use for out-of-home caregiving is common, especially among individuals who provide more intense caregiving. Health care systems can address the mismatch between caregivers’ interest in and use of technology by modifying privacy policies that impede information exchange.     

Patient depression and caregiver attitudes: results from The AgeD in HOme Care study

BACKGROUND: The present cross-sectional study was aimed to evaluate the association between care recipient depression and caregiver attitudes. METHODS: Data were from The AgeD in HOme Care project, a study enrolling subjects aged >or=65 years receiving home care in Europe. Depression was diagnosed as a score >or=3 on the MDS Depression Rating Scale. Caregiver attitudes were assessed using two measures: 1) caregiver dissatisfaction (the caregiver was dissatisfied with the support received from family and friends); and 2) caregiver distress (the caregiver expressed feelings of distress, anger, or depression). RESULTS: Mean age of 3415 participants was 82.4 years, 2503 (73.3%) were women and 430 (12.6%) were depressed. Dissatisfaction was significantly more common among caregivers of depressed, compared with those of non depressed patients (32/430, 7.4% vs. 78/2985, 2.6%; p=<0.001). After adjusting for potential confounders, patient depression was still significantly associated with caregiver dissatisfaction (OR: 1.84; 95% CI: 1.12-3.03). Similarly, distress was significantly more common among caregivers of depressed patients, compared with those of non depressed patients (81/430, 18.8% vs. 175/2985, 5.9%; p<0.001). After adjusting for potential confounders, patient depression was still significantly associated with caregiver distress (OR: 2.41; 95% CI: 1.72-3.39). LIMITATIONS: The cross-sectional design of the study cannot provide the cause-effect relationship between depression and caregiver attitude; no data were collected on caregiver characteristics. CONCLUSIONS: Among older adults depression is associated with increased caregiver dissatisfaction and distress. Knowledge of factors influencing caregiver attitudes may be valuable to study interventions aimed to promote patient and caregiver well being.     

Interventions for caregivers of children who disclose sexual abuse: A review

The importance of interventions for non-offending caregivers following the disclosure of child sexual abuse (CSA) is increasingly recognised in the literature. These interventions are particularly important given what is currently known about the impact of CSA disclosure on non-offending caregivers and the value of caregiver support in assisting their children's recovery. This review provides summary background information on the prevalence and short-term impact of CSA on children, with a particular focus on variables that mediate outcomes including caregiver support. The impact of a child's disclosure on the non-offending caregiver is discussed considering both the emotional effects and changes in their support networks. Furthermore, we examine the associated needs of non-offending caregivers including information, emotional support, support around their own victimisation if relevant, and parenting assistance. Finally, we provide a detailed review of the specific interventions available for caregivers after such a disclosure is made. These interventions include those that just provide information, support groups, psycho-educational groups, support incorporated into the child's intervention, and individual caregiver support. We conclude that interventions for non-offending caregivers are vital in the recovery of the child and their caregiver following CSA and discuss future research considerations.     

Attitudes and dilemmas of caregivers supporting people with intellectual disabilities who have diabetes

Objective

To explore how professional caregivers in communal living arrangements support people with a mild or moderate intellectual disability (ID) who have diabetes.

Methods

A qualitative study, 13 caregivers participated in semi-structured interviews.

Results

Professional caregiver support in diabetes care is almost solely directed towards administering medication and controlling food intake. Caregivers want to provide person-centered care but are hindered by a conflict between protecting a client's health and at the same time respecting autonomy. None of the caregivers had received training in supporting self-management; their knowledge about diabetes is limited. The few that engaged their client in self-management stressed the importance of a positive and collaborative approach.

Conclusion

This study provides a first insight into the challenges that professional caregivers experience when a client with ID has diabetes. More education for caregivers seems needed. Self-management support is likely to benefit from consensus among caregivers about what comprises person-centered care and self-management in people with ID who have a chronic disease.

Practice implications

Increasing caregivers’ awareness of the importance of supporting self-management in people with ID and a chronic disease is essential. Discussing practice examples in the light of existing knowledge about developing autonomy will contribute to their awareness.     

Dementia care in rural and remote settings: a systematic review of informal/family caregiving

Objectives

The purpose of this review is to critically evaluate the available evidence from the published scientific literature on informal/family dementia care in rural and remote settings to assess the current state of knowledge, identify support implications, and make recommendations for future research.

Methods

A systemic review of the literature indexed in ISI Web of Knowledge, PsychInfo, Medline, Healthstar, CINAHL, EMBASE, and Sociological Abstracts was conducted. Data were extracted from papers meeting inclusion criteria: peer-reviewed papers that focused on dementia or Alzheimer's Disease (AD), and examined informal or family caregiving in relation to persons with AD or dementia in remote or rural locations.

Results

The search identified 872 articles for review, reduced to 72 after removing duplicates and articles not meeting inclusion criteria. Of the 72 remaining, 26 are included in this review focusing on informal/family caregiving. A previous review focused on the 46 studies on formal/paid care. Four themes that correspond to the current state of knowledge about rural informal/family dementia caregiving in the 26 included studies were: service use, carer experience, support and education, and rural perceptions of dementia.

Conclusions

Despite the growing body of evidence over the 20 years of this review, and the widespread interest in family dementia caregiving generally, much of the research exploring family caregiving in rural areas focuses on the experience, use and barriers to formal service provision. There is limited work examining the experiences of rural caregivers and their education and support needs. More research is needed about the impact of rurality on caregiving and the education and support needs of rural informal family caregivers.     

Conveying empathy to hospice family caregivers: Team responses to caregiver empathic communication

Objective

The goal of this study was to explore empathic communication opportunities presented by family caregivers and responses from interdisciplinary hospice team members.

Methods

Empathic opportunities and hospice team responses were analyzed from bi-weekly web-based videoconferences between family caregivers and hospice teams. The authors coded the data using the Empathic Communication Coding System (ECCS) and identified themes within and among the coded data.

Results

Data analysis identified 270 empathic opportunity-team response sequences. Caregivers expressed statements of emotion and decline most frequently. Two-thirds of the hospice team responses were implicit acknowledgments of caregiver statements and only one-third of the team responses were explicit recognitions of caregiver empathic opportunities.

Conclusion

Although hospice team members frequently express emotional concerns with family caregivers during one-on-one visits, there is a need for more empathic communication during team meetings that involve caregivers.

Practice implications

Hospice clinicians should devote more time to discussing emotional issues with patients and their families to enhance patient-centered hospice care. Further consideration should be given to training clinicians to empathize with patients and family caregivers.     

Diabetes mellitus patients' family caregivers' subjective quality of life

OBJECTIVES: To assess the subjective quality of life (QOL) of family caregivers of Sudanese type-1 and type-2 diabetic outpatients, using the WHO 26-item QOL instrument, compared with a general population sample; and to examine the factors associated with caregiver QOL. METHOD: Responses of caregivers of 105 outpatients with type-1 diabetes and 135 with type-2 diabetes were compared with 139 general population subjects. RESULTS: Caregivers were satisfied with the content of items related to general social supports. Type-1 caregivers had significantly lower QOL scores than type-2 caregivers and the general population. Parents and siblings had lowest scores compared with other family groups. Caregivers scored higher than patients. Patients' age and duration of illness, and caregivers' education, marital status and state of health were positively associated with caregiver QOL. Caregivers' QOL was predicted by their appraisal of patients' QOL. CONCLUSIONS: Caregivers who were sick, younger, single, less educated and caring for patients with more recent illness appeared relatively vulnerable. Clinicians should be interested in the dynamics of the family caregiving situation--as it impacts QOL--and in promoting caregiver awareness of diabetes in order to enhance the caregiving role, quality of care and QOL.     

全髋关节置换术后患者主要照顾者的负担及其影响因素

目的:调查了解全髋关节置换术(total hip replacement,THR)后患者主要照顾者的负担情况并探讨其相关影响因素.方法:采用自行设计的患者及照顾者一般情况调查表、患者自我护理评估表(ADL)、心理资本量表、社会支持评定量表(social support rating scale,SSRS)和照顾者负担问卷(caregiver burden inventory,CBI)对南方医科大学珠江医院的120名THR患者及其照顾者进行问卷调查.结果:THR患者主要照顾者的CBI得分为45.82±12.77,属于健康危险性负担;患者的CBI得分与社会支持总分及客观支持、对支持利用度的得分,以及心理资本总分及感恩奉献维度的得分呈负相关(P＜0.05);多元回归分析结果显示,患者自理能力、照顾者年龄、家庭人均月收入、照顾时间、感恩奉献、客观支持和对支持的利用度是照顾者负担的影响因素(P＜0.001),共可解释方差变异量的61.8％.结论:THR患者照顾者存在明显的照顾负担,提示临床医护人员应结合患者及其照顾者的个性特征制定有针对性的干预方案,调动社会支持力量,以减轻其照顾负担.