Zhu Liu. Caregiving Burden Among Family Caregivers of People with Advanced Cancer: a Literature Copyright© Zhu Liu
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Nursing & Healthcare International Journal ISSN: 2575-9981 MEDWIN PUBLISHERS Committed to Create Value for Researchers Caregiving Burden among Family Caregivers of People with Advanced Cancer: A Literature Review Zhu Liu* Review Article Department of Hepatobiliary Surgery, China Volume 5 Issue 3 Received Date: May 10, 2021 *Corresponding author: Department of Hepatobiliary Surgery, The People’s Hospital of Published Date: June 07, 2021 Deyang City, Sichuan, Deyang 618000, China, Email: [email protected] DOI: 10.23880/nhij-16000240 Abstract patients with advanced cancer, aiming to improve medical worker’s understanding of caregiver burden, provide a basis for buildingThis literature their support review focussystem, on and the produceresearch new methods, insights levels, for nursing influencing practice factors and and research types inof thefamily future. caregiver burden caring Keywords: Cancer; Caregiver burden; Review Abbreviations: ZBI: Zarit Burden Interview; CRA: depressive disorder, fatigue, insomnia and risen mortality Caregiver Reaction Assessment; CASP: Critical Appraisal among informal caregivers [7-9]. Taking care of people in Skills Programme. the late stage of cancer, in particular, is recognized as more challenging [10]. The main reason is that the symptoms of Introduction cancer vary with the phase of the disease, and the status of patients at the end of life is more uncertain [11,12]. Caregivers With the improvement of diagnosis, treatment and the can suffer from great indignation, social isolation or other symptom-management of disease in the health care system, serious consequences [13,14]. Furthermore, the burden on the life span of terminally ill cancer patients has been greatly family caregivers for patients with advanced cancer also extended. Cancer is gradually regarded as a chronic illness, which means a major shift in the model of care-delivering [1]. In the majority of cases, the care of cancer patients has affectshas a significant their quality impact of life on or patients’ self-reported psychological, well-being physical, index transferred from a hospital setting to home care [2]. As a infinancial the end and [17]. community activities [15,16], which in turn result, more and more family members are taking on the role of caregivers, providing daily life, emotional and medical However, the research investigating the caregivers’ support and assistance to patients with advanced cancer. It burden and its impact on their lives appears to be limited. has been recognized that home-based care is a long-term Interestingly, a study conducted by De Korte-Verhoef, et al. backed project, and care providers in the family are the [18] found that although more than half of family caregivers bedrock of the health assistance system [2]. reported a serious burden, only a quarter were aware that the burden had negatively affected their everyday lives. Due Many evidence-based studies have stated that informal to the serious lack of attention and support, some authors caregivers in the family undergo a heavy burden when caring consider the caregivers as “potential patients” or “secondary for a sick family member [3-6]. As researches in developed patients” [19-21]. countries shown, high levels of burden can lead to anxiety, Caregiving Burden among Family Caregivers of People with Advanced Cancer: A Literature Review Nurs Health Care Int J 2 Nursing & Healthcare International Journal Primary caregivers can be divided into two categories: method design that combines quantitative questionnaires formal and informal caregivers. The former mainly refers to with semi-structured interviews. Six studies mainly assessed nurses or nursing workers who are professionally trained and get paid to deliver care; the latter usually relate to predictors of caregiver burden, and four focused on the family caregivers, such as spouses, children or relatives, relationshipcaregiver burden, between five caregiver identified burden influencing and other factorsoutcomes. or who deliver care without pay [21]. According to the World In terms of cancer types, nine studies (9/15) did not specify Health Organization [22], there were more than 18 million the type of cancer, three studies focused on patients with new cancer cases worldwide in 2018. An increasing number lung cancer and their caregivers, while the rest were on of cancer cases will require greater nursing demands as well breast cancer, ovarian cancer, and head and neck cancer as more support from the family caregivers [21]. respectively. Moreover, most of the studies (11/15) did not Studies have indicated that caregivers are likely to four studies used phase III/ IV criteria based on the TNM confront threats to their bodies and emotion during the stagingspecifically system. state Inthe the criteria light ofof advancedgeographical cancer, distribution, and only process of caring for dying patients [2]. The caregiving tasks the major studies were conducted in developed countries are usually diverse, especially for family caregivers, not only (10/15), such as South Korea, Italy and the United States, and to tackle the routine household chores or assist patients in a few in developing countries. all aspects of daily life but also to provide emotional and Before analysing the data, the author appraised the treatment options and paying medical expenses [19,23,24]. quality of the article using the Critical Appraisal Skills Also,financial family support, caregivers such tend as participating to focus on patient-centered in the discussion care of Programme (CASP) tool. Conveniently, the CASP appraisal and sometimes ignore their own needs. A recent study by checklists can be downloaded for free from the website at any Oedekoven, et al. [25] suggests that it is of great importance time. What’s more, this is a simple and effective instrument to recognize the strains caregivers face, so that the healthcare that covers the elements needed to evaluate evidence and professionals can provide support in the right way to ease could guide students in a critical assessment of the quality the burden on caregivers. In order to recognize the current of selected literature [26]. Since there are versions of CASP body of knowledge related to the burden of caregiving in checklist that apply to different methodologies, appropriate advanced cancer a literature review was conducted. type was selected based on the methodology of each study. Search Strategy Caregivers’ Characteristics An electronic search of four English databases was Across all the 15 studies, the sample size ranged from 20 conducted: Academic Search Complete, Medline, CINAHL, to 327. Most of the family caregivers were women (69.4%), and Health Source: Nursing/Academic Edition. To avoid nearly half (45.6%) were spouses, 44.1% were grown-up unnecessary errors, the author consulted a librarian at the children, and the average age was 46.2 years. More than half university about the search strategy. Keywords or free text of caregivers had a secondary school education or above were combined using Boolean operators (ie, “AND” and “OR”) (65.9%), 45.4% had occupation (including part-time jobs), during retrieval to get all relevant studies about caregiver and 69.5% of them provided more than 4 hours of care per burden over the last three years. After deleting the duplicate day. article, the author re-examined the title and abstract in line with the exclusion criteria to exclude some articles. The The Measurement of Caregivers’ Burden author also conducted a manual search by evaluating the reference list of articles that strongly related to this topic. Of the 15 studies, the most commonly used tools to The limitations imposed included literature published (a) measure Caregiver Burden were the Zarit Burden Interview in the English or Chinese language, (b) between 2010 and (ZBI) [27-30] and the Caregiver Reaction Assessment (CRA) 2020, (c) peer-reviewed, and (d) full text. [2,31-33]. Other studies used revised versions that were translated into the country language and tested for reliability Results and validity. ZBI is a self-rated scale for caregivers. The initial scale consisted of 29 items, which was later revised into a 22-item questionnaire. Each item was measured using a articles were comprised in this review. The majority of the 5-point Likert scale. The score ranges from 0 (never) to 4 studiesThe adoptedinitial searchquantitative revealed methods 509 studies, (13/15), but of fifteenwhich (almost always). The overall burden is the sum of the scores three were longitudinal studies and ten were cross-sectional for all items, from 0 to 88. The higher the score, the greater studies. One study was qualitative design, with in-depth the burden [28]. When it comes to CRA, which was first semi-structured interviews. The final one was a mixed developed by Given, et al. in 1992 [34]. It consists of five core Zhu Liu. Caregiving Burden among Family Caregivers of People with Advanced Cancer: A Literature Copyright© Zhu Liu. Review. Nurs Health Care Int J 2021, 5(3): 000240. 3 Nursing & Healthcare International Journal Records of caregiver’ age and caregivers’ burden varied positive and negative experiences according to the life of in the literature. Some of literature claims that the burden caregiving.domains with The a score total alsoof 24 ranged items fromthat reflect1 (totally the disagree) caregiver’s to on older caregivers was higher than on the youngers 5 (totally consent). Only in the area of caregivers’ self-esteem, [21,32], and Ramli and Pardi [2] have opposite views on the higher the score means the burden was lower. The higher this. Many previous studies have even shown that there the score in the other four areas, the greater the burden [2]. is no correlation between caregivers’ age and caregivers’ burden [37,43,44].In a cross-sectional study in Italy, 174 Themes Emerging from the Literature participants were divided into younger and older groups and found that caregivers aged 65 or over had a higher level of 1. the level of caregivers’ burden 2. The types of burden and personal development, with caregivers having to give This literature review has identified three main themes: upburden.