The impact of cancer on the caregiver’s health
Abstract
Recent studies indicate that diagnosis of cancer has direct effects not only on the patient but also on other people involved such as the caregivers. People who give care to cancer patients either at home or at hospital perceive it as a challenging and burdensome work. Despite this general perception, little has been discussed how diagnosis of cancer directly or indirect affect the health of caregivers such as nurses, relatives, friends and family members. This research paper proposes to investigate, describe, and discuss how cancer caregiving affects the health of informal caregivers. To fulfill the purpose of this research study, attention will be given to factors that influence the course and influence of caregiving. These factors will be used to form the conceptual framework of the research study. In general, the caregiver may perceive the acre task as either negative or positive. In addition, the experience of the caregiver may lead to either negative or positive effect on his or her health. In addition, there is a strong consensus that caring for cancer patients is not only burdensome but also affects health of the person. Lastly, some scholars have suggested that caregiving to cancer patients have contributed to increased psychiatric morbidity due prolonged distress, biological vulnerabilities, and the physical demands of caregiving. The research will use descriptive survey methodology.
Keywords: cancer, caregiving, caregiver’s health, cancer caregiving
The Impact of Cancer on the Caregiver’s Health
Statement of the Problem
The modern health care policy is steadily shifting from its focus to informal care instead of the usual professional one. As a result, many people, especially family members, friends, and relatives of the patients are being used to provide care either at home or in the institution. The growth of informal caregiving has steadily increased in the health sector over the past 2-4 years. Emanuel and Librach (2011) noticed that there is an escalating trend of use of informal caregiving in the early discharge of patients from hospitals. With the growing trend, family members, friends, and relatives form the biggest part of care giving system in the modern health care system.
Cancer is one of the areas where informal caregiving is widely utilized. The disease currently affects many people and they require dedicated caregivers to attend to them, which is mostly provided by their family members, relatives, friends, as well as professional nurses working at the facility. According to the latest American Cancer Society, about one out of every three people in America diagnosed by cancer requires dedicated caregivers (Girgis et al, 2013). This is happening as cancer is shifting to a chronic disease that requires long-term treatment implemented at home.
The problem, as explained by Trudeau-Hern and Daneshpour (2012), is that the diagnosis of cancer directly affects and influences the health of caregivers. According to Kim et al (2015), Girgis et al (2013), several empirical studies indicate that that cancer caregivers report higher level of psychological distress among other health concerns. An empirical study by Mosher, Bakas, and Champion (2013) revealed that the diagnosis of cancer as well as the course of illness directly influences the level of the caregiver’s health. The caregiver may suffer from intense psychological distress as well as multiple physical needs among other health complications. These unhealthful conditions may manifest in the life caregivers in form of pain, anxiety, mental strain, emotional strain, restriction in sexual functioning, as well as depression. They may alter the functional ability, employment status, bodily functions, social roles, as well as appearance of the cancer caregiver. In addition, the cancer caregivers may develop stress as he or she watches the disease progresses in the patient.
Background and Significance of the Problem
One of the greatest assets that the society has is the availability of family members and friend s who can provide care to patients whenever the need arises. The practice of home caregiving especially to cancer patients has drastically increased over the past 2-3 decades, as the disease is slowly becoming a chronic problem. By estimates, more than 16 million people currently provide informal care to sick people either at home or in hospitals. A study by Northouse et al (2012) indicated that majority of cancer caregivers are middle-aged adults and older spouses, and sometimes children who volunteer to provide informal care to the sick person.
Over the past few decades, informal caregiving to cancer patients has been considered as providing important service to the society and families. However, little has been considered concerning the cost of caregiving especially to the health of the caregiver. According to Pitceathly and Maguire (2003), there is a general strong consensus that providing informal care to cancer patients is not only burdensome and stressful but also unhealthful. In addition, the task of cancer caregiving is costly because it contributes to psychiatric morbidity due to increased depression, emotional strain, and mental strain. Several researchers such as Romito et al (2013), Fletcher (2007), Waldron et al (2013) have also suggested that a combination of factors such as physical demands of caregiving, prolonged distress and biological vulnerabilities may directly compromise the physiological functioning of cancer caregivers thus leading to increased risks of health problems.
Some empirical studies such as the one conducted by Talley, McCorkle, and Baile (2012) show that cancer caregivers are less likely to participate in immunity measures and preventive health behaviors. They experience slow wound healing and greater cardiovascular reactivity, which are indications of serious health concerns. In addition, some cancer caregivers are faced with increased risks of serious negative health outcomes. Informal family caregivers have the greatest health risks because they devote themselves to the needs of their loved ones while at the same time neglecting their own health needs. As explained by Shaffer, Kim, and Carver (2015), they may ignore or not recognize the signs of illness, depression, exhaustion that they are experiencing thus leading to worsening health conditions.
This research, once completed, will play very significant role in the field of health science by translating knowledge into improved health for the citizens. As a result, it comes with the benefit of establishing effective health services, which will subsequently strengthen the modern health care system. The significance of this proposed research study is based on the fact that it will enhance the safety behaviors of the population when it comes to informal caregiving to cancer patients. In addition, due to its high interdisciplinary nature, this research study will significantly contribute towards improving not only health systems and services but also social and cultural aspects of the target population.
Statement of the purpose
The purpose of this proposed research study is to analyze the impact of cancer on the overall health of the caregiver. In addition, the research purposes to identify specific ways through which the task of caregiving to cancer patient affects the health of caregivers.
Literature Review
Introduction
This provides a comprehensive review of the previous pieces of literature on the effect of cancer on the caregiver’s health. The literature was reviewed from authoritative sources such as books, peer reviewed articles, journals, periodicals, as well as online sources such as government and health databases. The literature will be reviewed to discover the underlying effects of cancer caregiving on the health of the caregiver as well as existing gaps in the previous research studies.
Theoretical Literature
While refereeing to a network of members, Waldron et al (2013) defined caregivers as generally the primary care providers: they could include partners, family members, parents, siblings as well as children and friends. Some theories have been developed concerning the caregiver’s situation especially when placed to care for a cancer patient. Talley, McCorkle, and Baile (2012) identified two most important concepts, which critically influence the caregiver’s situation to include caregiver’s experience and the care tasks. These two concepts have great impact on the impact of cancer on the caregiver’s health. The caregiver’s experience can be burdensome, positive, or negative. Fletcher (2007) stated that the impact of cancer on the caregiver’s health could be clearly understood when both the subjective and objective components of the care situation are distinguished. According to Sulkers et al (2015), the former reflect changes of the experience relating to the situation while the later reflect changes in the care tasks. Shaffer, Kim, and Carver (2015) explained that the tasks could be grouped into frequency, amount, as well as duration and type of care involved.
Research
Romito et al (2013) conducted a multidimensional construct research on the impact of caregiving and established that the type of help provided and the amount and frequency of task determines the level of burden that the caregiver experiences. The research further indicates that the burden and stress experience that greatly contribute to the negative health of the cancer caregiver. Another empirical study by Pitceathly and Maguire (2003) concluded that caregiving tasks that are more confining and disruptive cerates heavy burden on the caregiver, which eventually negatively affects their mental as well as emotional health. This research study further identified personal tasks such as washing and feeding the cancer patient to be more difficult and burden thus greatly affecting the caregiver’s health.
The result of another empirical study conducted by Northouse et al (2012) indicates that specific cancer caregiving task such as providing emotional support and love may have differential effects on the caregiver’s burden. Recent independent studies by Mosher, Bakas, and Champion (2013) and Kim et al (2015) among the frail elderly consistently shows that the level of mental and functional impairment of the cancer caregivers increases with the amount and frequency of assistance they give to the cancer patients. The three studies specifically identify mental and functional impairment as the leading negative health effect of cancer caregiving.
Summary
The existing scientific knowledge affirms that caregiving can be burdensome and stressful thus contributing negatively to the caregiver’s health. Specifically, cancer caregiving affect the caregiver’s health through mental and functional impairment. Even though this is a generally accepted consensus, the available literature does not clearly discuss the relationship between caregiving and caregiver’s health as well as the contributing factors. In addition, there is lack of consistent relationship between caregiver’s health and patient impairment (cancer) thus calling for a more insightful research study which is proposed here.
Conceptual Framework
Introduction
This section provides the theoretical assumptions, rules, as well as principles, which will be used to hold together the broad concept of the research study and methodology. It discusses the necessary analytical tools that present several variations and contexts in order to organize ideas presented in the research as well as to make conceptual distinctions.
Nursing Conceptual Model
The Levine Conservation Model will be used to provide a useful conceptual framework for the study investigating the impact of cancer on caregiver’s health. The model specifically suites the research study because it measures factors and effects of physical and psychological functioning in cancer patents and caregivers. As explained by Trudeau-Hern and Daneshpour (2012), the Levine Conservation Model present four major conservation principles which guide the development of intervention, identification of salient outcomes, as well as selection of instruments for measuring variables for the study. The model is very useful for this study in the analysis and interpretation of data that will be collected. Lastly, the Levine Conservation Model is chosen because it will provide a coherent, orderly and unified approach of envisioning the processes of the research study.
Explanation of Levine Conservation Model
The Levine Conservation Model attempts to establish new and effective methods of caregiving either by nurses of home caregivers. According to Girgis et al (2013), its primary goal is to provide more individualized patent care that is less focused on the usual medical procedures. As a result, the primary focus of this model is to promote the overall emotional and physical wellbeing of the patient as well as the caregiver by addressing conservation areas (Emanuel & Librach, 2011). Levine Conservation Model aim to help patients and caregivers conserve structure, energy, and social and personal integrity. Apart from conversation, it considers adaption and wholeness as extremely important factors in promoting the patient’s and caregiver’s health. According to Myra Levine when a person is in a state of conservation, he or she is able to adapt effectively to new health challenges without requiring heavy efforts.
According to Girgis et al (2013), the perceptions of the situation and contextual elements plays important roles in caregiving process, especially in creating stressful situations. The extent of the stressful situation as experienced by the caregiver depends on the relationship between perceived resources and demands. Trudeau-Hern and Daneshpour (2012) asserted that the caregiver’s unique perception of the caregiving situation and patient-illness characteristics is likely to impact on his or her health. According to the cognitive stress theory, three key components of stress, which are involved in the caregiving process, include outcomes, stressors, and potential mediators. Caregiver’s task can be considered as a mediator or a stressor. Based on this conceptual framework, five factors namely care task, caregiver’s experience, sociodemographics characteristics, and social support may be used to explain how cancer caregiving affect the caregiver’s health. The figure below illustrates the proposed conceptual framework for the study of the impact of cancer on caregiver’s health.
Figure 1: Conceptual Framework
Link to the study purpose
The proposed conceptual model has direct link with the purpose of the study. For instance, the Levine Conservation model will help identify specifically how cancer caregiving affect the caregiver’s health. It will identify specific caregiving tasks that impact on the caregiver’s health. In addition, the proposed conceptual model will establish a relationship between cancer patents and caregiver’s health and identify outcomes of cancer caregiving.
Statement of Research Questions
Research Questions
This research study will be guided by two exhaustive research questions listed below:
- Is there a relationship between cancer caregiving and the caregiver’s health?
- How does cancer caregiving contribute to the negative health of the caregiver?
Variables
In a research study, variables are elements whose quantity as well as quality varies accordingly. There are two types of variables namely the independent variable and the dependent – a research study is more interested in the dependent variable than the independent variable. This research will include both two types of variables.
Independent variable – This is the element that affects the quantity and quality of the dependent variable. It is the element that is manipulated by the researcher in order to analyses changes in the independent variables. For this research study, the independent variable will be the length and tasks of cancer caregiving either at home or at a hospital.
Dependent variable – This is the element whose behavior and characteristics are affected by changes in the independent variable – it is the variable we are interested in. The research is designed to measure changes in the dependent variables. For this research study, the dependent variables will include psychological distress, multiple physical needs, mental strain, emotional strain, depression, and other health complications.
Definition of Terms
Nurse: A person skilled in caring for young children or the sick usually under the supervision of a physician
Psychological Distress: Any form of unpleasant feelings that impact a person’s level of functioning
Mental Strain: Any form of nervousness resulting from mental stress
Emotional Strain: Any form of nervousness resulting from emotional stress
Depression: A mental state characterized by a pessimistic sense of inadequacy and a despondent lack of activity
Cancer: Any form of malignant growth or tumor caused by abnormal and uncontrolled cell division
Caregiver: A person who helps in identifying or preventing or treating illness or disability
Methods and Procedures
Introduction
This section discusses the methods and procedures that will be used to conduct the proposed research study. It covers various elements such as the research design to be used, sample and setting, sampling technique, as well as sampling technique discussed as follows.
Research Design
The study of the impact of cancer caregiving on the caregiver’s health will employ a descriptive survey research design based on the quantitative techniques. This designed, as described by Vogt (23), is beneficial because it provides rich information about the phenomena under the study and effectively describes the real life situation. The descriptive survey research design is chosen because it provides information of the study element as they occurred.
One of the primary advantages of using descriptive survey research design is the ability to gather more information, and accurately summarize, present, and interpret it for the purpose of answering the research questions. With this research design, the researcher is able to get statistical information that is measurable and verifiable. This design will be used to collect data from the sampled population without manipulating any variable.
The descriptive survey research design will be used to identify and illustrate the relationship between cancer caregiving and the caregiver’s health as well as influencing factors and outcomes. Variables will be set to identify and measure the impact on the caregiver’s health. In addition, it will consider the contributing factors, responses, as well as impacts of cancer caregiving on the caregiver’s health.This methodology will rely on the use of questionnaire to collect the required quantitative data for analysis.
Sampling Technique
The research study will use stratified random sampling technique to select respondents. As explained by Vogt (99), stratified random sampling technique divides the target population into small groups known as strata, which are formed, based on the shared characteristics and attributes of the members. In this case, the strata will be formed based on shared characteristics such as age, gender, relationship between patient and the caregiver, health care facility, as well as length of caregiving. A random sample will be selected from each stratum for interview through research questionnaires for the purpose of data collection.
Target Population
The research study will be conducted among five manor hospitals in United States of America. The country was chosen because it has high cancer incidence rates in addition to several specialized hospitals for providing cancer care. The five hospitals were chosen because they record the highest bed rates for cancer caregiving. The research anticipates to get a good number of cancer caregivers that will give good representation of the population. The five hospitals will be selected randomly based on their dealing with cancer patients.
Sample Size and Setting
As indicated above, the sample population will consist of five hospitals. From each of the hospital, 5 nurses and 10 cancer caregivers will be randomly selected to answer the research questionnaire. This will give a total sample size to be 75 for the purpose of this research study. Cancer caregivers and nurses are selected because they have experience with the work of caregiving thus are able to provide accurate and reliable information that will best answer the research question. They will be selected randomly and required to answer the research questionnaire.
Measurement Methods
Research Instrument
The measurement that will be used in this research study is questionnaire. Singh (201) defined a questionnaire is a printed self-administered report form that is designed to elicit information from the respondent. The questionnaire to be used will be specifically designed to assess and analyze the impact of cancer caregiving on caregiver’s health.
Questionnaire will be used as the main tool of data collection because it offers considerable advantage in administration and costs. Through this method, items to be measured will be included in the questionnaire through the use of simple and answerable questions. The designed questionnaire will be given to every sampled respondent who are them required to fill them accurate. All items included in the questionnaire will be designed to answer the specific research questions. The researcher will distribute questionnaires personally to the respondents or mail them whenever there is no access. Mailed questionnaires are extremely efficient and provide information in a relatively short period at low cost.
Questionnaire was chosen as the suitable research instrument because it presents an even stimulus potentially to large numbers of people simultaneously and provides the investigation with an easy accumulation of data. Watzlawik and Aristi (2007) maintain that in addition to anonymity, questionnaires give respondents freedom to express their views or opinion and to make suggestions. Anonymity helps to produce more candid answers than is possible in an interview.
Scoring of the Questionnaire
This research study considers articulately the process that will be used to develop, score, and test the questionnaire as a suitable means of data collection. Five sequential steps will be used to develop, score, test, and posit the research questionnaire. The five steps include (1) research background, (2) conceptualization of the questionnaire, (3) data analysis, and format, (4) establishing validity and, (5) establishing reliability. The questionnaire will be developed systematically following this sequential step in order to reduce many errors occurring as well as enhance the data quality.
The first step, research background, will examine the purpose, objectives, as well as research questions in order to develop reliable and valid questionnaires. This will involves determining the audience, their background, as well as the process used to select them. The second step is to generate questionnaires that would sufficiently answer the research questions and meet the research objectives. This process involves transforming the content into questions by indicating what the questionnaire is measuring such as attitude, behavior change, health changes, facts, and perceptions. The third step involves selecting appropriate scales of measurements, format, question ordering, and questionnaire layout to write questions. Lastly, the researcher will establish validity and reliability of the research questions.
Validity of Questionnaire
In academic research, validity is considered as the ability of the research instrument to measure only what it is intended to measure with limited deviations. It can also be considered the degree to which the research instrument has measured what the researcher set out. As a result, the validity of the questionnaire is determined by its ability to provide answers to the research questions. At the outset, the questionnaire meets the face validity test because it will be designed to measure only the intended outcome. This will be guaranteed by including in the questionnaire only questions that measure the desired outcome such as the health outcome of caregivers during and after caregiving. In addition, the questionnaire will be designed to provide a range of questions and responses that appropriately measure the relationship between cancer caregiving and caregiver’s health.
Types of Construct Validity
Construct validity is established when the questionnaire is designed to measure something abstract. There are two types of construct validity namely content and concurrent. Content validity is concerned about enhancing the content of the questionnaire by specifying the full domain of the content. On the other hand, the concurrent validly is concerned about determining whether the test covers a representative sample of the domain that is being measured.
Reliability of Questionnaire
Watzlawik and Aristi (2007) defined reliability as the outstanding ability of the research instrument to produce reproducible results. In essence, each time the research instrument is used it should produce similar results and scores in order to ensure reliability. The questionnaire will be considered reliable if it is able to produce the same scores or answers when test is conducted repeatedly. In this case, the test-retest will be used to measure the reliability of the questionnaire. This will be done by administering the questionnaire to the same group repeatedly over a short period to see if we get the same result.
Research Procedure
The researcher will use a descriptive survey design in this research study. The survey design will be used to collect primary data from the sampled population consisting of nurses and cancer caregivers. The respondent will be selected using stratified sampling method. The researcher will then use questionnaire to collect the required data from the sampled population. The respondent will be required to give their answers by filling in their respective questionnaires.
Once collected, data will then be cleaned to identify and eliminate inaccurate and incomplete responses before entering them in a computer program for analysis. After cleaning, the data will be organized into various categories then stored in the computer for future references.
Ethical Considerations
Cognizance will be taken of the fact that this study is investigating very sensitive issue that is likely to elicit hostility, insecurity, or concealment of the real data required from the participants. Confidentiality and privacy will therefore be ensured for subjects to safeguard their interests. In order to obtain informed consent, permission to carry out the research will be sought from the university and other relevant authorities such as the local government. In addition to the permission, the researcher will make participation in the research study voluntary. It will be clearly explained to participants that the purpose of the research was to collect data and analysis the impact of cancer on the caregiver’s health.
In addition, the researcher will also obtain the subject’s consent to complete the questionnaires. Buchanan (2004) defined informed consent as an agreement to voluntary participates in the research. The researcher will also inform the respondents of their rights to voluntary participate in the research without any penalty. Lastly, the proposed research will be taken through the university’s formal research ethics review before the actual action. The formal ethical review will discuss various places and points of ethical considerations within the research and the society at large. This will follow the overview of ethic review process as set out by the university.
Data Analysis
After collection, data will be cleaned to identify and eliminate inaccurate and incomplete responses before entering them in a computer program for analysis. The quantitative data collected through the questionnaires will be analyzed using a computer program known as SPSS 9.0. During the data analysis, descriptive statistics will be used to demonstrate the demographic characteristics of the sampled population. Simple statistics such as measures of central tendency and dispersion will be used to analyze quantitative data collected. Statistics to be used in the data analysis include frequency counts, means, and percentages. The results of data analysis will be presented using frequency distribution tables and bar graphs.
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