Background
People who suffer from a mental health problem can be a major burden for family members (Coon, 2005). Family members suffer in silence because society wants them to fulfil their obligations even if they are not equipped to handle the negative impact of stress (Alpert & Fava, 2005). Nevertheless, they have to take care of their loved ones (Bieling & Antony, 2003). It is therefore imperative to learn more about the thought and feelings of family members and the insights gleaned from the study will be used to increase knowledge regarding mental health issues (Doran, 2003).
Mental health problems can be characterised as an anxiety disorder that can occur after someone has been through a traumatic event (Vedantam, 2008). A traumatic event is further defined as, “something horrible and scary that you see or that happens to you” and that during this type of event “you think that your life or other’s lives are in danger” (Kazak, 2004, p.211). Thus, anyone who has gone through a life-threatening event is prone to develop mental illness (Blake, 1995, p.15). A more technical definition is as follows: “Experiencing, witnessing or confronting events that involve actual or threatened death or serious injury, or a threat to the physical integrity of self or others” can lead to the traumatisation of the individual (Kazak, 2004, p.212).
The term trauma should be used to describe the “subjective response of an individual, not the quality of an event” (Hart, Nijenhuis, & Steele, 2005, p.2). This is a crucial insight that allows researchers of information so that researchers to fully understand the significance of mental health problems (Klein & Wender, 2005). Thus, those who studied patients who went through a traumatic episode suggest that “traumatisation involves a loss of the pre-traumatic personality structure in adults” (Hart, Nijenhuis, & Steele, 2005, p.2). It can also be the after-effects of deep-seated anxiety that can lead to a host of mental health problems (Mueller, 2009, p.184). Examples of mental health problems include depression, schizophrenia, posttraumatic stress disorder etc. (McCullough, 2003, p. 19).
There is not standard way to treat mental health issues although medication is a major component of treatment modalities in mental health issues (Melrose, 2010). It is also important to remember that it is the job of the health professional to strengthen the patient’s ability to “function in daily life, and commonly implies overcoming reciprocal fear and avoidance of different dissociative parts, and the related phobias of attachment, separation, loss, traumatic memories, and change (Hart, Nijenhuis, & Steele, 2005, p.11). In other words, the family members that will become the participants of this study should not be expected to act as if they are the private nurses of the patient (Melrose, 2010). They are there to provide emotional support and comfort for the patient.
This is not the first attempt to understand the interaction between family members and a mentally ill patient. It has to be made clear that even in New Zealand, this is not the first attempt to shed light on the said subject matter. In fact, there is a New Zealand based organisation called the Association of Relatives and Friends of the Mentally Ill (“ARAFMI”). The official site of the said association points to a document called “The Triangle of Care.” The said framework emphasizes “the need for better local strategic involvement of carers and families in the care planning and treatment of people with mental health” (Carers Trust, 2012, p.1). Although ARAFMI is based in New Zealand, a significant portion of the materials used to support their advocacies is based on research information that comes from the United Kingdom.
In New Zealand, there were numerous empirical studies made with regards to mental health and mentally ill patients in a community setting. But most of the time the focus is on the professional health worker the treatment made in the context of a community (Elder, Evans & Nizette, 2009, p.25). There is a need for empirical studies focused on the impact on family members when it comes to taking care of mentally ill relative.
Focus of Inquiry
The main purpose of this study is to understand and describe the reaction of family members with regards to a mental health issue. The main research question is stated as follows: What is the experience of living with someone who has a mental illness. The study will attempt to discover the feelings and thought process of family members when they deal with a relative that lives with them and suffers from a mental illness. The parameters of this study involves the application of phenomenological principles to be able to understand and describe the interaction of family members with regards to how they deal with the psychological and emotional requirements needed to take care of a loved one who suffers from a mental illness.
This study will help family members understand how to cope in an extremely stressful situation. A family member who will take care of a mentally ill patient must be aware of the complications that may arise because of the interaction between family members and the person who is mentally ill.
Methodology
The main component of the research framework is the use of phenomenology, specifically descriptive phenomenology. It is an example of qualitative approach for the purpose of conducting an empirical research. The decision to use a qualitative approach as opposed to the more common quantitative research design enables the researcher to learn more about the impact of mental illness on families.
Phenomenology will enable the proponent of this study to look into the interaction between family members and the afflicted member of the family without preconceived notions and therefore, it will provide a more realistic and accurate depiction of their thoughts and feeling with regards to the impact of taking care of a person suffering from mental illness (Hudelson, 1994). According to adherents of phenomenology “Freedom from prejudice means overcoming the strait-jacket of encrusted traditions, and this also means rejecting the dominating enquiry by externally imposed methods” (Moran, 2000, p.5). There is therefore greater freedom to explore and collect information with regards to mental illness and its impact on family members (Pope & Mays, 2006).
The main component of the research framework is the use of phenomenology. Phenomenology enables researchers to have fresh insights over the effect of mental illness because it is the study of phenomena “the study of appearances of things, as they appear in our experiences or the way we experience things, and thus the meanings things have in our experiences” (Klenke, 2008, p.222). In other words, phenomenology enables researchers in the field of social science to study experiences that are the result of “perception, thoughts, memories, imagination, emotions, volition, embodied action, and social activity” (Klenke, 2008, p.222). It is difficult for quantitative research methods to describe and understand the emotional and psychological impact of health issues especially when it comes to mental illness.
It has to be pointed out that a major aspect of phenomenology is the way the researcher interprets experiences from a first-person point of view. Thus, the researcher is not only present to measure the reaction of the participants through the use of certain methods but the researcher is a primary factor of the research method. In this case the researcher enters the home of the patient. The researcher will be allowed to observe the interaction of family members. The researcher acts as an information-gathering tool (Holloway & Wheeler, 2010).
Phenomenology is the framework used to guide the researcher on how to conduct observations and interviews. But the process of inquiry is based on symbolic interactionism. According to adherents of symbolic interactionism, “it is the process of interaction in the formation of meanings for individuals… human beings are best understood in relation to their environment” (Nelson, 1998, p.1). Symbolic interactionism enables the researcher to understand how the participants perceive the environment and the patient under their care.
Research Design
Data Collection
Under the phenomenology framework the researcher must be totally immersed in the phenomenon under investigation (Speziale, Streubert & Carpenter, 2007, p.81). In this case the researcher will spend two hours of observation and then proceed to interview the family members for another hour. This process will recur for 5 days a week in a two-week period. The researcher avoids giving criticism, evaluation and opinion in the course of the interview.
It is only after the interviews and observations are completed that the researchers begins to analyse the information collated through the immersion process. The researcher will compare information taken from all the families. When the interpretation of data is completed, the researcher begins to describe what has occurred during the observation and interview stage of the study. Thus, the researcher will begin to write down the description of the elements of the phenomenon observed. The researcher will also find common themes and patterns in order to establish credible conclusions.
It is important to point out that when the study refers to taking care of the patient, this expression does not mean that the participant takes care of the patient as a health worker. Thus, the context of care in this case refers to the kind of interaction that usually occurs when a family member takes care of a sick father or brother. The type of care given to the patient can be as simple as providing food and shelter or as complicated as monitoring the medication or therapy prescribed by the physician.
Sampling
The preparation for the letters and assessment forms will take one week to complete. It will be sent out to the targeted participants. The first letter will be sent to the New Zealand Mental Health Association to seek assistance with regards to the said research. The director of the said agency will have to approve the request. The proponent of the study will have to set-up an appointment with the director in order to clarify the framework of the qualitative research design. After the director gives a favourable response to the request and provides authority to coordinate with the said government agencies, a list of potential participants will be created. This process will take one week because there is a need to coordinate with the records keeper.
The participants are members of the immediate family that takes care of a middle-aged man who suffers from a mental illness. Each participant must be related to the patient and takes care of the patient in a home setting. In other words, the patient is not committed to a healthcare facility but lives with family members. The proponent of this study will coordinate with the said agency that deals with mental illness.
Through the proper coordination with the New Zealand Mental Health Association, the proponent of this study will be sent to the appropriate government agency. Thus, the proponent of this study will be able to communicate with the patients and their respective families who were selected to become participants for this research. A letter will be sent to all potential participants (see Appendix A). The letter that will be sent to the participants will outline the purpose of the study. The said letter will also assure them of confidentiality of information gathered from the said study and the information will not be divulged to anyone without the written permission of the participants. If they agree to participate, an assessment form will be mailed to them.
The assessment form will further trim down the number of participants. The purpose of the assessment form is to determine if the selected participants have the following conditions or suffers from another serious health issue such as
- drug addiction;
- alcoholism;
- disability;
- other debilitating disease like leukaemia and other forms of cancer.
The importance of the assessment form is to find out if the selected participants suffer from other problems that are not related to mental health. For example drug addiction can take its toll on family members but it is not a mental health issue. The same thing can be said about a physical disability like amputated legs as a consequence of war. The amputee may manifest social problems that can cause psychological and emotional stress to family members but this type of physical ability is not a mental health issue. Therefore, the study is only limited to the impact of a mental illness on family members.
Another major criterion is the residence of the participants. The participants must reside within the city. If they live far beyond the city boundary, then, they will be removed from the list. Based on the other factors that were listed in the assessment form, there will be participants that will not be included in the final list because the conditions created by their inclusion can make the research process untenable and therefore impossible to complete.
The assessment forms will be sent and after the filled-out forms are collected and analysed, the proponent of this study will make a final list of the participants. Another letter will be sent to the final set of participants. The letter will advise them that the study will commence on a given time frame but the participants will have to indicate the day and time that they will be available.
The research design is non-emergent and therefore the researcher will collect all pertinent information using the framework of phenomenology and symbolic interactionism. Thus, the researcher will spend two hours a day, five days a week and for a period of two weeks. It will be a continuous process and therefore it is important that the participants live within the boundaries of the city. Thus, the researcher can establish a practical routine. Depending on the schedules of the participants there may be a need to work long hours within the said two-week period.
The researcher will observe the family members taking care of the patient. In most cases there will be more than one family member taking care of the patient. But the one that will be interviewed is the family member who filled-up the assessment form and gave the consent for the study to be conducted in his or her home. The researcher will therefore focus on one participant in every home. The researcher will be allowed to observe the interaction between family members and the patient with special focus on the participant.
Before the researcher initiates the first phase of the observation of the interaction of family members and patient there is a need to establish rapport with the participants and the patient. Thus, the researcher will request a meeting with the participant. The meeting can be conducted in the home of the participant or it can be done in another location. The purpose of the meeting is to establish rapport and to clarify the expectations of the participant when it comes to the observation and interview portion of the research. After the initial meeting with the participant, the researcher will request the said family member to introduce the researcher to the patient. It is important that the patient feels comfortable in the presence of the researcher in order to preserve the natural interaction of family members and the patient, as if there is no observer in the room.
The researcher becomes a data-gathering tool and will not allow past experience and knowledge to interfere with the observation and recording of data. In other words, the researcher will remain impartial and will not allow any form of bias to cloud his interpretation of the phenomenon under observation. The researcher will do everything in his power to become totally immersed in the phenomenon that will be observed. The observations will be recorded in a notebook. The researcher will not interact with the patient. The researcher will not make suggestions or comments. The researcher will not do anything that will influence or distract the family members taking care of the patient. The researcher becomes a silent observer recording the social interaction in the said household.
Analysis
After the two-hour observation, the researcher will review the notes recorded in the notebook. The researcher will find patterns and other elements that are perceived to be important when it comes to the psychological and emotional burden of taking care of a person with a mental illness. The researcher will write down questions that will be asked for the one-hour interview that follows.
The researcher will ask permission from the participant to proceed with the interview portion of the study. The researcher will ask the participant to describe a typical day. The researcher will also ask the participant the thoughts that course through his or her mind while taking care of the patient. The researcher will ask the participant to describe what they felt on that particular day. Thus, the interview portion of the research is comprised of two types of questions. The first group of questions concerns the reaction, feeling, and thoughts of the participants on that particular day of the interview. The second type of questions concerns the reaction, feeling, and thoughts of the participants over the course of the treatment program and since the time they started to take care of the patient.
It is also imperative to consider the ethical ramifications of the study. Therefore, from the initial phase of the research process when the proponent of the study coordinates with the New Zealand Mental Health Association, the provisions in the Treaty of Waitangi must be kept in mind. Based on the Treaty of Waitangi, researchers in New Zealand partnership, participation and protection. Thus, the proponents of the study cannot proceed without ethical approval. The research design must also consider the ethical ramifications of data gathering. It is important to keep in mind the provisions stated in the Treaty of Waitangi if the participants belong to indigenous people of New Zealand, specifically the Maori people. The authorities involved in this research as well as patients and participants will be assured that no personal information will be divulged to any parties. There will be no exemptions to this rule. Social and cultural justice must be observed in order to protect the interest of the marginalised group of people like the Maori.
Timeline
Significance of Research
There is a need to understand the emotional and psychological impact to caregivers when it comes to mental health patients. A deeper understanding of the phenomenon will help specialists to understand the challenges faced by family members when it comes to taking care of a loved one. The observations made and the insights that can be gleaned from this study can help physicians and health counsellors to deal with burnout and other personal conflicts that may arise from the interaction of family members and patient.
This study will also demonstrate that there are certain aspects of mental health care that cannot be fully understood if researchers are limited only to qualitative research methods. This study will also show the importance of phenomenology as a research framework because it can generate new information with regards to the impact of mental illness on family members.
The limitations of the study can be seen in number and location of the participants. Due to time constraints the proponent of this study cannot afford to increase the number of participants in order to create a diversified group based on various socio-economic factors. At the same time the proponent of this study cannot afford to replicate the same exercise in other cities. Thus, the findings and interpretation cannot be used to make generalisations.
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