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World J Gastrointest Oncol. Jun 15, 2023; 15(6): 973-978
Published online Jun 15, 2023. doi: 10.4251/wjgo.v15.i6.973
Analysis of load status and management strategies of main caregivers of patients with malignant tumors of digestive tract
Xiao-Yan Wang, Shu Zhang, Emergency Department, West China Hospital of Sichuan University, Chengdu 610000, Sichuan Province, China
Jing Wang, ENT (Ear-Nose-Throat) Department, Chengdu Hospital of Combination of Chinese Traditional and Western Medicine, Chengdu 610000, Sichuan Province, China
ORCID number: Xiao-Yan Wang (0000-0002-0480-3869); Shu Zhang (0000-0002-2568-9153).
Author contributions: Wang XY designed the research study and performed the research; Wang J contributed analytic tools; Zhang S analyzed the data and wrote the manuscript; and all authors have read and approve the final manuscript.
Conflict-of-interest statement: No conflict of interest.
Open-Access: This article is an open-access article that was selected by an in-house editor and fully peer-reviewed by external reviewers. It is distributed in accordance with the Creative Commons Attribution NonCommercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: https://creativecommons.org/Licenses/by-nc/4.0/
Corresponding author: Shu Zhang, MD, Associate Professor, Emergency Department, West China Hospital of Sichuan University, No. 37 Guoxue Lane, Wuhou District, Chengdu 610000, Sichuan Province, China. dr.zhangshu@qq.com
Received: March 17, 2023
Peer-review started: March 17, 2023
First decision: April 7, 2023
Revised: April 12, 2023
Accepted: April 23, 2023
Article in press: April 23, 2023
Published online: June 15, 2023

Abstract

Caregiver load refers to the subjective and objective negative impact of caregivers in the care of patients, and excessive load will have a serious impact on patients and caregivers themselves and can reduce their quality of life. For the main caregivers, it not only needs to care for the patients in life and daily life, but also needs to pay the cost of treatment for the patients, coupled with the need to carry out their own original work, life, etc. excessive life pressure, economic pressure, work pressure, emotional pressure, etc. lead to heavy load of the main caregivers, which can easily cause caregivers to have different degrees of psychological problems, which will cause serious adverse effects on the caregivers themselves and cancer patients, not conducive to the construction of a harmonious family and society. This article analyzes the current situation of primary caregiver burden in patients with gastrointestinal malignant tumors, analyzes its influencing factors, and specifies specific treatment strategies. It is hoped to provide scientific guidance for later related research and application.

Key Words: Malignant tumors, Digestive tract, Primary caregivers, Current load situation, Handling measures

Core Tip: This article analyzes the current situation of primary caregiver burden in patients with gastrointestinal malignant tumors, analyzes its influencing factors, and specifies specific treatment strategies. It is hoped to provide scientific guidance for later related research and application.



INTRODUCTION

With the change of life structure and dietary habits, the incidence of malignant tumors of the digestive tract has increased in recent years, which poses a threat to public health safety and also increases the social burden[1]. Because patients with malignant tumors have certain particularities, the demand for care is high. And caregivers are mostly family members of patients, and there are many death concerns among caring patients, and a variety of stresses can have a serious impact on the physical and mental health of caregivers[2]. Therefore, it is a hot issue in clinical practice to analyze the load status of the main caregivers of patients with malignant tumors of the digestive tract and make targeted treatment strategies.

STATUS OF LOAD OF MAIN CAREGIVERS OF PATIENTS WITH MALIGNANT TUMORS OF DIGESTIVE TRACT

The load of the main caregivers of patients with malignant tumors of the digestive tract includes five dimensions: Time-dependent load, development-limited load, physical load, sociability load, and affective load, which are described separately as follows.

Time-dependent loads

In studies of the load status of primary caregivers of patients with gastrointestinal malignancies[3,4], it was concluded that the time-dependent load score was 9.17 points, which was the dimension with the highest load score (Table 1 for specific data), which was consistent with the conclusions of many researchers in China[5].

Table 1 Total score and dimension scores of primary caregivers of patients with malignant tumors of digestive tract (n = 189).
Items
mean (Standard mean)
SD
Time dependent load (5 entries)9.17 (1.83)5.51
Developmental limiting load (5 items)6.08 (1.22)5.65
Physical load (4 items)2.86 (0.97)4.29
Social load (4 items)2.02 (0.51)2.47
Affective load (6 items)0.92 (0.15)1.45
Total load (24 items)22.05 (0.92)15.35
Developmental limited burden

Development limitation load is influenced by time-dependent load, and the main caregivers of patients with gastrointestinal malignancies spend all their time and energy on patients, resulting in no time belonging to themselves to enjoy life. In related research, it is found that caring for and accompanying patients has become the main care of the only life content, their original lifestyle is completely changed, social activities such as parties, games, shopping are forced to cancel, and even hobbies are forced to give up, and their career planning, life planning and other forced changes make the main caregivers have serious adverse emotions[6,7]. A domestic study on the load bearing by the main caregivers of patients with malignant tumors of the digestive tract found that time-dependent load and development-limited load were the main loads, 25.4% of the main caregivers expected to rest briefly, and 16.4% wanted to be shared. In many foreign studies, it is emphasized that the main caregivers of patients with chronic diseases need more support, encouragement and proper rest, otherwise long-term accumulation will lead to their emotional breakdown and produce heavier emotional burden[8].

Physical load

The nursing tasks of patients with malignant tumors of digestive tract are relatively heavy. Prolonged care and companionship of patients make the main caregivers have obvious physical load, causing headache, physical decline, fatigue, drowsiness, palpitation and other physical symptoms due to affected sleep and mood, accompanied by anxiety, upset, depression, restlessness and other psychological symptoms[9]. In a foreign study, 35% of cancer patients were found to be mainly cared for the presence of physical stress symptoms, accompanied by significant physical load. However, relevant domestic surveys have found that most of the main caregivers of cancer patients believe that their health status is fair, and only a small number believe that their health status has problems due to caring for patients, which may be related to different study groups, or may have a greater impact on the psychological function and social function of caregivers than physical aspects, so that they automatically ignore the changes in health status[10,11]. In conclusion, physical load is also one of the main caregivers of patients with gastrointestinal malignancies.

Social load

The main caregivers of patients with malignant tumors of the digestive tract spent almost all their time caring for and accompanying the patients, and the lack of social support made them feel socially isolated[12]. Once problems of not being understood and not being able to get along with each other emerged in caring patients, the primary caregiver could easily experience sociability load. Relevant domestic studies have found that most primary caregivers can be understood and supported in caring patients, and only a small proportion have significant sociability load[13].

Affective load

Induced by traditional Chinese culture, most families can help each other. When a family member has a problem or disease, other members will actively and actively help and take care of it. In the hearts of most people, family members are superior to their own interests and hobbies. Therefore, it can be found in a number of studies that the emotional load is the lowest in the load of the main caregivers of cancer patients[14]. However, it has also been stated that a small number of people experience feelings such as complaints and anxiety after their lives have changed due to caring for patients, triggering emotional load[15].

INFLUENCING FACTORS OF MAIN CAREGIVER LOAD IN PATIENTS WITH MALIGNANT TUMORS OF DIGESTIVE TRACT
Economic situation

Economic situation is one of the important factors affecting the load of the main caregivers of patients with malignant tumors of the digestive tract, and in families with better economic conditions, they can choose more treatment options, and carers can be invited to take care of patients together, which greatly reduces the pressure on the caring load of the main caregivers[16]. In families with poor economic conditions, they should not only bear the responsibility of caring for patients independently, but also consider daily expenses, patients' treatment costs, etc., in addition to the fact that caring for patients may not be able to participate in work, the decline in economic income makes the load of the main caregivers more emotional. Some studies have found that economic pressure is the main factor affecting the care load of the main caregivers of cancer patients, caregivers with relatively poor economic situation need to bear the comprehensive pressure of economic, mental, social, and life, and there is bound to be a high economic load in the face of cancer, a disease that costs "no bottom hole". Second, poor economic conditions limit the choice of patient treatment and examination options, and these pressures also increase the load on the main caregiver[17].

Caregiving impacts income

Malignant tumors of the digestive tract are cancers with high morbidity and mortality among all malignant tumors. In most cases, patients need to be cared for and accompanied by others every day, and even need members of the entire family to care for them when they are severely ill, which makes the main caregivers unable to have time and energy to work, which will have a serious impact on their economic income. However, the daily treatment or rehabilitation of patients requires a certain cost, and this economic pressure makes the load of the main caregiver heavy. Some studies have found that in families with heavy income due to caring for patients with advanced cancer, the degree of caring load appears to be heavy, which is consistent with the conclusions of a number of domestic and foreign studies[18].

Patient self-care ability

The self-care ability of patients is the main factor affecting the load of the main caregivers of patients with malignant tumors of the digestive tract. The worse the self-care ability of patients, the heavier the load of care of the main caregivers. The analysis of the reasons may be related to the following points: (1) With the progression of the disease, patients may experience a variety of complications, the decline of body function makes their own care ability also decline, followed by an increase in dependence on the main caregiver, which directly leads to caregivers need to pay more time and energy, and the load naturally borne is also relatively heavy; (2) With the progression of the disease, the number of chemoradiotherapy increases, which aggravates the medical burden, coupled with the lack of professional nursing skills and knowledge of the main caregiver, resulting in a higher load of their own care. Some related studies have pointed out that among the main caregivers of patients with advanced cancer, most people crave professional disease knowledge training; and (3) With the progression of the disease, patients may experience cancer pain symptoms, especially aggravated in the evening, and it is often necessary for the main caregivers to take relevant measures to relieve cancer pain, which undoubtedly has a serious impact on the sleep of the main caregivers, and then can make the main caregivers experience a significant load[19].

Time to care for patients

The time of caring for patients is one of the important factors affecting the load of the main caregivers of patients with malignant tumors of the digestive tract, and the longer the total time of caring for patients, the heavier the load of the main caregivers. The reason may be due to the care of patients, the main caregivers can freely control the time significantly shortened, the reduction of social activities makes it easy to collapse mentally, and the mental load it bears is also relatively heavy. At the same time, the longer the patient is cared for, the greater the impact on work, and the natural income will be greatly reduced. However, the cost of patient treatment makes the main caregiver bear heavy economic pressure, and the spirit is in a state of high tension and fatigue for a long time. Finally, because caring for patients, their own lifestyle, routines are changed, lack of sleep, irregular life and other adverse effects on the physical health of the main caregivers have also caused adverse effects, in the double adverse effects of physical and mental, the main caregivers are prone to higher physical and mental, spiritual load.

COUNTERMEASURES TO REDUCE THE LOAD OF MAIN CAREGIVERS OF PATIENTS WITH MALIGNANT TUMORS OF THE DIGESTIVE TRACT
Develop a diagnosis and care plan according to the actual situation to reduce the medical costs of patients

In the actual diagnosis and treatment, the economic situation of the patient 's family and main caregivers shall be evaluated to understand whether the patient pays medical insurance or commercial insurance, the actual situation of the patient' s disease shall be analyzed for the patient with poor economic conditions, and the drugs and consumables with higher selectivity and higher reimbursement rate of medical insurance shall be tried in the treatment and examination. During hospitalization, appropriate care plans are developed to reduce unnecessary treatment and nursing procedures, so as to appropriately reduce their medical costs.

Strengthening the care of patients with poor self-care ability in clinical nursing

In clinical nursing, the actual situation and self-care ability of patients are assessed to determine the level of care of patients. Special care patients were given 24-h care, primary care patients were given circuit observation every 1 h, secondary care patients were given circuit observation every 2 h, and patients with poor self-care ability were given more care and attention, mainly including the following points: (1) Strengthen the nursing patrol of patients, include patients with critical condition and poor self-care ability in the focus of nursing observation, especially during the shift, do a good job of work handover and information check; (2) help patients turn over and pat their back when they are awake, assist patients to complete daily face washing, tooth brushing, dressing and other operations, especially to strengthen the care of the patient's mouth and skin; (3) Regularly evaluate the patient 's condition, predict the possible risk events or complications, and formulate response plans. Once abnormal phenomena are found, they should be immediately reported to the doctor and emergency treatment should be made according to the doctor's advice; (4) strengthen the health education for patients and main caregivers, tell the behaviors conducive to disease or physical rehabilitation, guide them to develop good health habits, and improve their own rehabilitation; and (5) develop an out-of-hospital follow-up plan after discharge, among which telephone follow-up: 2 wk after discharge, 1 return visit every 3 days; 2-4 wk after discharge, once a week; 4-8 wk after discharge, once every 2 wk, 8-12 wk after discharge, once every 4 wk; door-to-door follow-up: 1 time a month, face-to-face communication with patients, telephone and door-to-door follow-up contents include the patient's recent pain, health behaviors, medication, physical condition, psychological emotions, etc., and make adjustments to the nursing plan according to the actual situation of patients; Inform patients of any questions they may have at any time in the group and provide remote guidance on relevant care. By strengthening the care of patients with poor self-care ability, nursing staff can reduce the care burden of the main caregiver to a large extent, which can effectively alleviate or prevent the emergence of care load[20].

Improving the time to get along with and accompany patients in clinical nursing

During the patient's hospitalization, improve the time for communication and companionship. In the nursing operation, it is necessary to pay attention to establishing communication with the patient, give them more spiritual encouragement and comfort, and then accompany the patient to walk outside the ward every day when their physical condition permits, so as to replace the main caregiver to accompany the patient. For special patients, the accompany model without family members can be carried out. The accompany nursing without family members is not to ask the family members of patients to hire professional accompany personnel for daily nursing, nor to limit the family members to visit the patients, but to let the family members of patients accompany but not protect. On the basis of completing their own work, the nursing staff replaces the family members of patients to complete the relevant nursing services, so as to improve the time to get along with the patients.

Actively communicate with the main caregivers of patients and provide psychological counseling and support for them.

Communicate regularly with the main caregivers of patients, evaluate their psychological status, understand their existing difficulties and inner real ideas, physical and mental status, targeted psychological counseling. Pay attention to protecting the privacy of patients' families when communicating, have polite, sincere and friendly tone, have natural and appropriate language, and conduct non-verbal communication when necessary[21,22]. Professional psychotherapy is carried out for primary caregivers who have significant psychological problems or severe load[23,24].

CONCLUSION

Due to economic situation, care will affect income, patients' self-care ability and care time of patients and other factors, the main caregivers of patients with digestive tract malignant tumors generally have different degrees of load, which will not only affect the care of patients, but also cause serious adverse effects on the physical and mental health of caregivers themselves. Therefore, in the later work, it is necessary to strengthen the load on the main caregivers of patients with malignant tumors of the digestive tract, alleviate or prevent the occurrence of load by formulating a targeted diagnosis and care plan, reducing the medical costs of patients, strengthening the time to care for patients with poor self-care ability, get along, and accompany them and carrying out psychological counseling and support for the main caregivers.

Footnotes

Provenance and peer review: Unsolicited article; Externally peer reviewed.

Peer-review model: Single blind

Specialty type: Gastroenterology and hepatology

Country/Territory of origin: China

Peer-review report’s scientific quality classification

Grade A (Excellent): 0

Grade B (Very good): B

Grade C (Good): C

Grade D (Fair): 0

Grade E (Poor): 0

P-Reviewer: Andersen JB, Denmark; Elkord E, Qatar S-Editor: Wang JL L-Editor: A P-Editor: Yu HG

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