Category: Caregiver

Moral dilemmas are contradictions between two behavior choices in a particular life situation. An ambiguous choice of behavioral strategy is common and places demand on the qualities of the individual. One of the most striking episodes that created a moral dilemma was a situation when I had to take care of a close friend of mine who had been undergoing unsuccessful treatment for a long time. Because I maintained close contact with the doctor, and the latter did not talk much to the hospital client, I often learned of the results of the examinations before the patient did. The choice between reporting the lack of positive results or keeping silent was a moral dilemma for me. It is known that this question is resolved unambiguously for medical personnel since doctors are obliged to notify patients about all examination data. However, in the case of interpersonal relationships, a serious contradiction arises. For a person who is not a doctor, the choice to remain silent is the right one.

The news that prolonged treatment has not yielded a positive result seriously impacts the patients psyche. Final recovery can depend a lot on the individuals attitude, positive thinking, and self-regulation skills. Every piece of information about the negative treatment results is a factor putting strong pressure on the patients mood and motivation, sometimes provoking depression. For this reason, I decided not to report the results of all examinations until there was no indication of a positive dynamic. Belief, sometimes unreasonable, in the fact that recovery will come sometimes enhances the effect of medications. Knowing this, I decided to shield my friend from negative thoughts to try to divert his thoughts.

A particularly significant argument for me was that the tests often give inaccurate results. To be conclusively sure of the correctness of the examination results, it is necessary to undergo the procedure several times. By telling the patient at once, relatives risk causing unwarranted patient stress since there is no certainty that the results are one hundred percent accurate. My friends experience was that the blood test results could have been confused and attributed to another patient. The risk of inaccuracy or physician error encouraged me not to report all results. Besides, it is essential to keep the specifics of the patients diagnosis (Fremgen, 2019). In my situation, a friend encountered a diagnosis that did not raise severe life-threatening concerns. Nevertheless, cases that involve the risk of a fatal outcome involve a thorough understanding of the patients condition and perspective.

Moreover, an important factor in this dilemma is the individuals temperament and perception of the world around them. The choice of reticence is appropriate when the person is quite receptive. However, suppose the person has a stable character and shows the ability to react ecologically to stressful situations. In that case, a frank conversation about the condition and prospects for treatment is acceptable. It is also important to understand the organizational specifics of therapy (Fremgen, 2019). In situations where patients work with several doctors from different hospitals or departments, the latter must be aware of all the information to make the right decisions. To do this, the hospital client needs to have accurate data on their diagnosis, examinations, and course of treatment at their disposal.

Thus, the dilemma associated with providing an individual with information about their condition is a multifaceted issue. Withholding test results may be a good solution if healing can be assured and there is no need to create a stressful environment for the patient. Cases involving serious risk to life require utmost honesty with the patient. The character type should also be considered an important argument for making a decision.

Reference

Fremgen, B. (2019). Medical law and ethics (6th ed.). Pearson.

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 others 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 patients 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

1. drug addiction;
2. alcoholism;
3. disability;
4. 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.

References

Alpert, J., & Fava, M. (2005). Handbook of chronic depression: diagnosis and therapeutic management. New York: Marcel Dekker, Inc.

Bieling, P., & Antony, M. (2003). Ending the depression cycle: a step-by-step guide for preventing relapse. CA: New Harbinger Publications, Inc.

Blake, D. (1995). The development of a clinician-administered PTSD scale. Journal of Traumatic Stress. 8(1), 15-35.

Carers Trust (2012). Mental health and the triangle of care. Web.

Coon, D. (2005). Psychology: a modular approach to mind and behaviour. CA: Thomson Wadsworth.

Doran, C. (2003). Prescribing mental health medication: the practitioners guide. New York: Routledge.

Elder, R., Evans, K., & Nizette, D. (2009). Psychiatric and mental health nursing. New York: Elsevier.

Gordon, M. (2010). Manual of nursing diagnosis. MA: Jones and Bartlett Publishers.

Hart, O., Nijenhuis, E., & Steele, K. (2005) Dissociation: an insufficient recognized feature of complex PTSD. Journal of Traumatic Stress, 18(5), 1-12.

Holloway, I., & Wheeler, S. (2010). Qualitative research in nursing and healthcare. New Jersey: John Wiley & Sons.

Hudelson, P. (1994). Qualitative researcher for health programmes. Web.

Kazak, A. (2004). Posttraumatic stress disorder (PTSD) and posttraumatic stress symptoms (PTSS) in families of adolescent childhood cancer survivors. Journal of Paediatric Psychology. 29(3), 211-219.

Klenke, K. (2008). Qualitative research in the study of leadership. UK: Emerald Group.

Klein, D., & Wender, P. (2005). Understanding depression: a complete guide to its diagnosis and treatment. Oxford: Oxford University Press.

McCullough, J. (2003). Treatment for chronic depression: cognitive behavioral analysis system of psychotherapy. New York: The Guilford Press

Melrose, S. (2010). Perfectionism and depression: vulnerabilities nurses need to understand. Nursing Research and Practice, 11, 1-7.

Moran, D. (2000). Introduction to phenomenology. London: Routledge.

Mueller J. (2009). Mental health of failed asylum seekers as compared with pending and temporarily accepted asylum seekers. European Journal of Public Health. 21(2): 184-189.

Nelson, L. (1998). Herbert Blumers symbolic interactionism. Web.

Pope, C., & Mays, N. (2006). Qualitative methods in health research. Web.

Speziale, H., Streubert, H., & Carpenter, D. (2007). Qualitative research in nursing. PA: Lippincott Williams & Wilkins.

Vedantam, S. (2008). Most PTSD treatments not proven effective.

Definition of Dementia and Personal Experience

Dementia is not, despite widespread belief otherwise, a specific illness. Instead, Dementia is a term used to collectively describe a wide range of conditions that lead to cognitive decline, memory impairment, and other brain disorders [1]. The most prevalent form of Dementia is Alzheimers Disease, which is a debilitating illness characterized by progressive and catastrophic deterioration of certain parts of the brain and, resultantly, a decline in cognitive and physical function. Alzheimers is the fifth leading cause of death among elderly adults, as it is seldom seen before the age of 50, with 90 percent of all cases occurring after the age of 65 [2]. However, while the likelihood of Dementia is exacerbated by age, it is not a normal part of the aging process.

Having my father diagnosed with Dementia, and specifically, Alzheimers Disease was disheartening. It came as a shock, not only to me but also to the entire family and friends groups. He was quite healthy for his age, with a regular schedule of exercise and meticulous in every single detail. Some months before his diagnosis, he had been exhibiting mild forgetfulness, which everybody attributed to the normal aging process. However, it gradually worsened, and he started losing his spatial awareness, confusion, lacked the initiative to exercise, and also problems handling change and basic everyday arithmetic. These conditions were also exacerbated by mood swings and aggression, which we, as his family, attributed to frustration. In context, he was an army veteran and fiercely proud and independent. However, over time, it became increasingly apparent that these may have been symptoms of an underlying condition, and he was taken for review. The diagnosis came back as Alzheimers Disease. The deterioration of his cognitive and physical function was devastating to the family unit as a whole. My father became increasingly dependent, and it was frustrating for himself as much as us.

The Movement from Cure to Care: How the Psycho-Social Dimensions Impact Those Living with Dementia

The psychological and social dimensions of Dementia are as devastating as the physiological effects of the disease. The psychological impact would exhibit right before the diagnosis, during the onset of initial symptoms. A person losing his autonomy, memory, and other cognitive abilities will often feel frustrated, anxious, and apprehensive. Reactions to the diagnosis are also highly varied on an individual basis, but the psychological impact cannot be ignored. Some of the more aggressive forms of Dementia, such as Alzheimers Disease, are often interpreted by people as a death sentence. Therefore, reactions to the diagnosis may include grief, apathy, anger, frustration, loss, shock, irritability, disbelief, aggression, and fear in the short term. In the long-term, absent proper support may evolve into depression and anxiety.

However, the psychological and social impacts of Dementia are not solely confined to the afflicted individual but spill over to their support structure, including family members, friends, and caregivers. The reaction to diagnosis may be very similar between the patient and their support system. It is, therefore, paramount that those diagnosed with Dementia, along with the people around them, are given adequate avenues to express their emotions and relay their fears. It is estimated that adverse psychological reactions to Dementia, termed as the Behavioral and Psychological Symptoms of Dementia (BPSD), affect up to 90 percent of Dementia subjects and their caregivers [3]. Further, while it has not been adequately delineated, BPSD may contribute to poor outcomes in the treatment and care [3].

The social impact of Dementia is profound in the lives of the patient themselves, as well as spouses, caregivers, partners, families, and friends. The ailment impacts the lives of millions who, in some way or form, provide support for people living with Dementia, whether that be in helping with charities and shopping, to providing 24hour care. The progressive cognitive impairment of a person living with Dementia inevitably results in a reduced ability to communicate coherently or undertake mundane daily tasks. BPSD can also be challenging to respond to accordingly. Therefore, the social impacts of Dementia may include the reduction of loss of employment, impairment of relationships, loss of time with family, friends, and social activities, social isolation, and the need to relocate to provide care. Further, while Dementia is more openly discussed in contemporary media, there remains little evidence as to whether the anecdotal assumptions about dementia patients have been reduced, which may lead to discrimination of patients and caregivers.

Treatment Differences in Urban and Rural Areas

There are extensive studies conducted relating to rural health disparities, especially in regards to mental health and access to care. The consensus is that patients diagnosed with Dementia living in rural areas are more likely to receive suboptimal care [4]. This is underlined by the fact that mortality attributed to Dementia in rural areas exceeded that of metropolitan areas by 11 percent between 2005 and 2009, given that there is no effective disease-modifying or preventative strategies against Dementia [4]. However, these figures may be disproportionately inaccurate, as rural populations comprise higher proportions of older adults, and may consequently be more susceptible to diseases of old age.

However, it is essential to understand the rural-health disparities, if any exist, in the diagnosis and health care delivery of Dementia patients. Prevalent studies outline that there is lesser uptake of government health insurance initiatives, such as Medicare and Medicaid, in rural areas as compared to urban areas in the US [4]. Resultantly, there exists more underdiagnosis of Dementia in these regions, with the diagnostic prevalent being 11 percent lower in rural counties [4]. Rural dementia patients may also face barriers to efficient ambulatory care and further experience unnecessary hospitalizations [4]. Therefore, even with a correct dementia diagnosis, individuals in rural areas may receive comparatively suboptimal healthcare delivery. Early diagnosis of Dementia also allows the opportunity for symptomatic treatments, as there is no proven disease-modifying treatment, participation in clinical treatment trials, the creation of long-term care plans, and sufficient estate planning. Therefore, the underdiagnosis prevalent in rural areas is an inherent compromise to follow-up intervention.

Why multi-discipline rehabilitation is not typically offered

Ideally, the diagnosis, treatment, and support of patients with Dementia should be handled through a multidisciplinary structure that facilitates psychological support alongside the nurses, doctors, and caregivers. This psychological support should be availed not only for the patient but for the caregivers as well. Psychologists can also contribute to the training and of social care and health staff to support dementia patients, along with their family caregivers. Given the nature of Dementia and the lack of a disease-altering medication, many of the multi-discipline interventions are non-pharmacological. They may include primarily exercise and motor rehabilitation, occupational therapy, intervention for BPSD, complementary and alternative medicine, psychological therapy, and assistive technology and domotics.

However, these multidisciplinary interventions are rarely suggested and offered to dementia patients and family caregivers for various reasons. A significant reason is an economic and social impact of implementing these interventions, absent a reliable disease-altering medication. Therefore, this non-pharmacological therapy would be prescribed and tailored for each dementia patient, with a consistent review for progress and alterations over a relatively long period. This economic burden heavily deters the recommendation of multidisciplinary approaches to Dementia rehabilitation and treatment.

On the other hand, supporting evidence for most of the multidisciplinary, non-pharmacological interventions is still preliminary. Some studies do outline the statistical significance of some non-pharmacological therapy outcomes, but the clinical relevance of these interventions is still widely uncertain. As a result, well-designed, and closely monitored randomized control trials, implementing innovative and cutting-edge designs are necessary to ascertain the efficacy of the multi-discipline interventions on patients with Dementia. These tests may be unviable to many rural areas, significantly limiting their scope as well. Also, further review is required to provide robust neurobiological reasoning for the application of these interventions, and also ascertain a viable cost-efficacy profile to dementia patients. It is, consequently, perhaps too early in the adoption of the multidisciplinary approach to be widely advocated for and offered.

Conclusively, while Dementia remains a significant burden to patients and caregivers alike, the psychological and social effects of the disease will continue to be relatively profound until ideally such a time when a disease-altering medication regimen can be successfully invented and tested. In the meanwhile, further clinical testing to assess the efficacy, and cost profile of a multidisciplinary, non-pharmacological approach is highly warranted to preferably alleviate some of the burden of the disease in the future. Until then, the interdisciplinary approach remains unviable for a majority of the population, including disproportionately affected rural communities.

References

Livingston G, Sommerlad A, Orgeta V, Costafreda SG, Huntley J, Ames D, Ballard C, Banerjee S, Burns A, Cohen-Mansfield J, Cooper C. Dementia prevention, intervention, and care. The Lancet. 2017.

Bjorklund BR, Bee HL. The journey of adulthood. Florida: Pearson; 2015.

Cerejeira J, Lagarto L, Mukaetova-Ladinska E. Behavioral and psychological symptoms of Dementia. Frontiers in neurology. 2012.

Abner EL, Jicha GA, Christian WJ, Schreurs BG. Ruralurban differences in Alzheimers Disease and Related Disorders diagnostic prevalence in Kentucky and West Virginia. The Journal of Rural Health. 2016.

Being a caregiver means contributing one’s mental and physical resources to the support of their family and close people. As mentioned in the video, the caregiving process enhances the senses of patience, responsibility, and resilience (TED, 2014). Additionally, one of the main traits that come with consistent caregiving is empathy, as the time spent with loved people and the ability to identify their needs improves one’s perception of other people, their needs, and emotions.

The choice between the family and the career that the speaker made is difficult due to the evaluation of possible sacrifices. On the one hand, the focus on the career would take away the precious time with the loved ones. On the other, choosing a family would mean potentially giving up on the working ambitions and higher income. However, I would make the same decision since, as mentioned by the speaker, work-life and family life stimulate each other and exist as complementing elements of life (TED, 2014). Thus, it seems natural to prioritize the family rather than sacrifice the caregiving for a career.

Once there is enough time for the loved ones in a person’s life, they feel more empathetic, caring, and motivated. As mentioned previously, being a caregiver enhances specific traits that are extremely helpful in the working process. Hence, prioritizing the family can lead to the development of certain characteristics that would help a person to work more efficiently without sacrificing their time with their loved ones. However, if I had to choose between healthy family life and a successful career strictly, I would go for the first option. I genuinely value human communication, care, and empathy, and I think that without a healthy family, I would not be able to enjoy my life naturally.

Reference

TED. (2014). Anne-Marie Slaughter: Can we all “have it all”? [Video]. YouTube. Web.

The article in question dwells upon attitudes of African-American caregivers whose children and grandchildren were diagnosed with emotional and behavioral disorders towards school counselors. It is necessary to note that this matter has not received sufficient attention from researchers.

The aim of the research is to reveal attitudes of African-American caregivers with low income whose children/grandchildren have to get mental health counseling. The hypothesis was not explicitly stated but it is clear that the researcher hypnotized that these people have negative experience due to the lack of understanding form the side of school staff that is primarily focused on white middle-class values (even in school where minorities are prevailing).

Six caregivers took part in the study. Tucker (2008) notes that three interviews during several months were held with the participants. It is also added that not all caregivers could attend the final interview. The participants were selected by school counselors of local schools.

Moustakas’ transcendental phenomenological method was utilized. Tucker (2008) analyzed transcripts of the interviews identifying themes. The findings of the study are as follows. The participants were frustrated as they felt they were let alone with their problems.

They also felt that school staff tended to have the so-called ‘my way or highway’. Caregivers also felt that the blame of the behavior was put on them. Only one participant reported that a school counsellor was helpful and gave her all the necessary information concerning mental health services available.

Tucker (2008) argues that this is mainly the result of the white middle-class perspective shared by the vast majority of school staff. The author also notes that counsellor have to be more attentive and find the most appropriate approaches to reach caregivers. The author also notes that the number of participants is one of major limitations of the study.

It is possible to note that the article in question is rather relevant as it can be regarded as a starting point of further research of the matter. The author used relevant research method, as it is necessary to use a qualitative technique to identify people’s attitudes. Nonetheless, the number of participants as well as their geographic location makes the study quite irrelevant.

Though the researcher notes that the number of participants may be between five and eight, it is inappropriate to make conclusion based on only three interviews held with six people living in a local neighborhood. The results may also be inaccurate as the interviewer was white and African-American participants could be reluctant to reveal their true emotions and concerns, as they could not trust a white person.

Therefore, there is a chance that the conclusions may be quite inaccurate. However, it is possible to agree with the author’s conclusions even though they need further justification. In conclusion, it is necessary to note that the article contributes greatly to the field of children development. Of course, further research is needed as there are numerous gaps.

It is essential to reach low-income African-American caregivers in different states and different schools. One of the major advantages of the study is that the author provides certain recommendations on the way trust among low-income African-American caregivers and schools staff (especially school counsellors). The article can be very helpful for school counselors and principals as it provides an important perspective on possible improvements of the situation.

Reference List

Tucker, C. (2008). Low-income African-American caregivers’ experiences of being referred to mental health services by the school counselor: Implications for best practices. Professional School Counseling, 12(3), 240-252.

Introduction

Children have varying and unique emotional needs that need to be satisfied. Their emotional wellbeing depends on the care and support given by caregivers. The perceptions of caregivers regarding the emotional needs of children have varying influences on children’s wellbeing. In order to explore this topic, I chose an article authored by Bettmann, Mortensen, and Akuoko (2015) titled “Orphanage Caregiver’s Perceptions of Children’s Emotional Needs.” I found this article to be of interest because it is peer-reviewed, incorporates a research study that addresses children’s emotional development challenges, contains an in-depth exploration of the topic, and offers recommendations to mitigate the problem.

The article is relevant to the field of Child and Youth Care because it explores in detail the issue and discusses the challenges that children who live in orphanage care encounter. On the other hand, it explores a topic that is relevant in the field of Youth and Child Care. The emotional wellbeing of children is important because it determines how well they develop and the quality of their transition to adulthood. Therefore, the article is highly relevant to the field. This paper will discuss the research study covered in the aforementioned article, its findings, and the conclusions drawn from it by the authors. In addition, it will provide personal reactions to the findings, lessons learned, and potential directions for future research.

The objective of the research study

In sub-Saharan Africa, 80% of children orphaned by AIDS live in orphan care and as a result encounter numerous problems that affect their emotional wellbeing (Bettmann, Mortensen, & Akuoko, 2015). These children only get care from orphanage caregivers. Therefore, they face high risks of psychological, emotional, and developmental problems. The main aim of the authors was to explore the perceptions of caregivers in Ghanaian institutions regarding the emotional needs of children in order to determine their level of competence with regard to providing quality and effective care to the orphans. The authors wanted to establish a relationship between the perception of caregivers and the quality of care they provide to orphans.

Research method and data gathering procedures

The authors adopted a qualitative study method and received approval for the study from a university-affiliated Institutional Review Board. Data collection involved a semi-structured interview approach and lasted for eight days. Interviews were either recorded or transcribed verbatim and recorded interviews lasted between 10 and 35 minutes (Bettmann et al., 2015). The researchers used the assistance of translators to improve communication with native participants who were not well versed in English. The authors kept journals that were used to record observations and notes regarding the decisions made during the process of collecting and analyzing data. In order to ensure the privacy of participants, interviews were conducted in a closed room or a secluded area (Bettmann et al., 2015).

Results

The authors fund out that caregivers demonstrated a great understanding of the emotional needs of children. However, they lacked the training and support needed in order for them to fully attend to the children’s needs (Bettmann et al., 2015). All participants described their understanding of children’s emotional needs even though many of them did not offer detailed explanations. Approximately 33% of participants acknowledged the complexity of children’s emotional needs with regard to the caregiver’s attunement, receptivity, and outreach (Bettmann et al., 2015). The participants explained the need for caregivers to attune to nonverbal clues, reach out to children, and the need to show empathy, unconditional love, consideration, and great care.

Participants had different explanations regarding the influence of separation on children. 53 participants argued that separation from parents is problematic while 18 participants argued that separation does not affect children (Bettmann et al., 2015). 6participants argued that separation problems were largely determined by the child’s age. 15 participants demonstrated their understanding regarding the effects of separation (Bettmann et al., 2015). 8 participants associated the problems of separation to lack of breast milk during a child’s development. Finally, 5 participants argued that separation has positive effects on children.

Conclusions made by the authors

The authors conclude that even though caregivers understand the emotional needs of children, many of them lack the training and support required in order for them to respond to the needs affectively (Bettmann et al., 2015). The authors also note than many caregivers possess a basic understanding of the emotional and relational needs of children. Inadequate understanding is detrimental to the proper emotional and relational development of children in orphanage care. There is a need for training and interventions to strengthen orphanage caregivers’ potential to provide quality and effective care to children (Bettmann et al., 2015). Caregivers need training that covers children’s basic attachment needs. On the other hand, specific interventions that target orphaned children need to be created and implemented. Training is critical because orphanage caregivers hold positions that influence the emotional and relational development of orphans significantly (Bettmann et al., 2015).

Suggestions for further research

The authors suggest that future research should focus on the longitudinal relationships that orphans and vulnerable children have with their caregivers for a better assessment of the effects of loss and separation (Bettmann et al., 2015). Evaluating the relationships for a long period of time will give better results and more reliable conclusions. In addition, they suggest that researchers should evaluate the severity of separation and its effects on child development especially in areas where HIV/AIDS victims are highly stigmatized. Finally, they suggest the use of observations as a data collection method in later studies to help researchers create connections between caregivers’ perceptions and their behaviors in providing care to children (Bettmann et al., 2015). The study conducted by the authors did not include observation as a data collection method. Therefore, they were unable to establish a relationship between the caregivers’ perceptions and their behaviors toward the orphans.

Personal observations

The findings of the author are informative and provide new insights regarding the field of Child and Youth Care. The authors provide a literature review before presenting the findings of the study. This information gives the reader insights that make the comprehension of the study’s results easy. The authors could have improved the results of the study by using a larger study sample and incorporating other data collection methods such as observation. Even though the study method was inadequate, results are relevant to the study topic. The study is strengthened by a detailed literature review that the authors provide at the beginning of the article.

If I were to continue this line of research, I would adopt a broader perspective and study-specific interventions that have been applied to the improvement of institutionalized care. In addition, I would narrow down research studies into the effects of training and caregivers’ perceptions on the development of specific cognitive and physical development components. For instance, I would study the effect of social interaction on the learning ability of children in orphan care. The research topic is broad and it would be important to narrow it down to specific components in order to achieve better and more reliable results. Studies would also apply different research methods in order to improve the authenticity and reliability of results. Children respond differently to caregivers’ behaviors and attitudes. It would also be important to study the effect of attitudes and behaviors on emotional development.

Conclusion

Children have many emotional and relational needs that need to be met by their caregivers for optimal development. Institutionalization subjects children to many challenges that affect their development. For example, the perception of caregivers affects the quality of care provided and the subsequent emotional development of children in orphanage care. Studies have shown that many caregivers only possess a basic knowledge about the emotional needs of children. The quality of care they provide is insufficient to meet the needs of children because of a lack of the necessary training and support.

This topic is interesting because emotional development is critical child development and it is influenced by the perceptions of caregivers regarding the needs of children under their care. The article has taught me that children need quality care in order to experience optimal psychological, emotional, and physical; development. It is important for caregivers to receive the necessary training and support that will enable them to meet all the needs of children under their care. Moreover, they need to possess sufficient knowledge regarding children’s emotional and interpersonal needs. I have also gained knowledge about the effects of institutionalization on emotional development among children and how separation affects their wellbeing.

Reference

Bettmann, J. E., Mortensen, J. M., & Akuoko, K. O. (2015). Orphanage Caregivers’ Perceptions of Children’s Emotional Needs. Children and Youth Services Review 49, 71-79.

Introduction

Observation techniques are helpful to collect details about a child’s behavior, demeanor, and emotional state. The name ‘Betty’ is used in this case study to protect the privacy of the child selected for the project. The purpose of this paper is to present the observation results with reference to the child’s behavior and interactions with caregivers.

Who Is This Child?

Betty is a three-year-old Caucasian female with fair, curly hair. Betty’s movements are slow. She prefers sitting on the floor and playing with dolls. When Betty wants to ask something, she does not shout, but she stands up and comes to her mother. Most of the time, Betty is focused on her play, and there are only some cases when she demonstrates dresses for her doll to the mother. When Betty answers her mother’s questions, she speaks quietly and avoids eye contact. Choosing three phrases to describe Betty, it is possible to state that the girl is silent, good-tempered, and focused on her activities. Betty has successfully passed developmental milestones like walking and talking on time. Since Betty is rather silent for her age, it is important to learn whether this behavior is typical of her; how she communicates with other toddlers and adults; how she behaves outside while running, jumping, and playing active games.

Who Is This Child in Their Body?

While referring to Dunn’s (2007) sensory profiles, it is possible to state that a sensation avoiding pattern is typical of Betty. The girl avoids noisy spaces, unfamiliar stimuli, and other detractors. She prefers playing independently, without involving other toddlers or adults in her games. Betty’s temperament can be described as having the features of melancholic and phlegmatic types. According to Lillas’s (2014) discussion of sensory, regulation, executive, and relevance systems, it is possible to note that Betty’s regulation is good, and her behavior is rather stable. She does not react to stimuli actively. Betty also demonstrates developed speech, motor, and gross motor skills. However, more information is required to conclude about her relevance system and previous experiences.

These qualities cause Betty’s mother to focus on creating safe and calm environments for the girl. More attention should be paid to developing Betty’s social skills to prevent stress while contacting with strangers. While comparing the observer’s and Betty’s sensory profiles, it is important to note that the observer follows a sensory sensitivity pattern. Both profiles are similar in terms of persons’ choice of rather passive roles while contacting with other people, but the observer is more responsive to stimuli. These aspects affect the relationships positively because the observer can notice many details and make Betty more involved in interactions without causing much stress.

Who Is This Child in Relationships?

The mother is the closest relative to this girl because Betty feels most comfortable while interacting with her. Betty is also friendly while contacting with other female relatives, but she is not interested in contacting with her father or other male relatives. While focusing on the Circle of Security, it is possible to state that Betty’s mother encourages her to explore the world and learn something new, but the girl feels uncomfortable because of new experiences. Therefore, the mother demonstrates support and accentuates the safety of environments at all stages of the Circle of Security (Powell, Cooper, Hoffman, & Marvin, 2014). It is easier for Betty’s mother to comfort the girl rather than to encourage explorations because she understands that Betty does not like situations associated with ‘going out’. For Betty, the continuous and accentuated support and assistance during the ‘going out’ and ‘coming in’ stages can have positive effects and reduce stress and pressure.

Support for This Child and Caregiver

To support Betty and make environments more appropriate for her, it is possible to apply the principles of therapeutic and the Circle of Security interventions because the SPACE program and the developmental repair strategy are not appropriate for this case (Australian Childhood Foundation, 2010; Pawl, 1995; Wilson, 2011). The building of secure relationships depends on ensuring that a child is respected and supported. Caregivers should be attentive, focused on children’s experiences, and interested in helping them (Powell et al., 2014). This intervention is selected to improve the security of Betty’s surroundings, and it should be followed by Betty’s mother. It is important to create positive experiences for Betty. However, challenges can be associated with Betty’s unwillingness to interact with caregivers, and Betty’s mother should pay attention to the girl’s reactions to different activities and situations. This approach differs from the past recommendations because, at the previous stage, the family was interested in helping Betty become more sociable.

Reflective Practice

The experience of interacting with Betty and her mother is associated with observing a real situation from the family’s daily life. Although Betty and her mother are not involved in the same activity, the girl feels the mother’s support. At this stage, it is important to answer questions on how Betty and her mother cooperate, what emotions are typical of Betty, and what other behavioral patterns she can demonstrate. It was easy for me to communicate with this family because Betty’s mother was friendly. To work with the family effectively, it is necessary to observe Betty in various situations, and the relatives’ support is important. The observation has not provided enough information about Betty’s behavior, and more sessions are necessary to conclude regarding the girl’s social skills and abilities to adapt to new environments.

Conclusion

The paper has provided the results of the observation project. Betty’s sensory and behavioral patterns are discussed in detail. The focus was also on describing qualities, reactions, and emotions typical of the girl.

References

Australian Childhood Foundation. (2010). Making SPACE for learning: Trauma informed practice in schools. Melbourne, Australia: Author.

Dunn, W. (2007). Supporting children to participate successfully in everyday life by using sensory processing knowledge. Infants & Young Children, 20(2), 84-101.

Lillas, C. (2014). The neurorelational framework in infant and early childhood mental health. In K. Brandt & B. Perry (Eds.), Infant and early childhood mental health: Core concepts and clinical practice (pp. 85-95). Washington, DC: American Psychiatric Publishing.

Pawl, J. (1995). The therapeutic relationship as human connectedness: Being held in another’s mind. Zero to Three, 15(4), 1-5.

Powell, B., Cooper, G., Hoffman, K., & Marvin, R. (2014). The circle of security intervention. New York, NY: The Guilford Press.

Wilson, D. (2011). The sounding board: Developmental repair [Web log]. Web.

Introduction

Human life sometimes resembles a strain of events significant enough to change one’s life in a completely different direction a few times within one’s journey in this world. One of these choices is related to the sacrifice of one’s personal life for the sake of saving the lives of others. However, while some people regard this choice as their direct job description (e.g., rescue teams, firefighters, police officers), others voluntarily give up their ambitions in order to take care of those around them (Gérain and Zech). The issue tackling these different phenomena is the fact that whereas the former sacrifice is not a long-term process, as saving one’s is frequently an endeavor that requires as little time as possible, so-called informal caregiving sometimes takes decades.

The very paradigm of patient-caregiver communication is mostly focused on the patients’ behavioral patterns and his or her level with satisfaction with current lifestyle and care. It goes without saying that people who no longer have the ability to take care of themselves are to be treated in the best possible way. However, with more than 15 million Americans taking care of their relatives, one might ponder their mental ability to cope with patients who often lose the desire to live (Kaminishi, Reza, and Hirsch). While the relatives with health issues feel depressed about being nothing but a burden to their loved ones, caregivers feel exhaustion, self-hatred because they are not able to help their relatives and ongoing guilt of feeling tired of taking care. Such a vicious cycle of contemplation eventually leads to the caregiver burnout, which scholars define as:

the degree to which a caregiver’s emotional or physical health, social life, or financial status has suffered as a result of caring for a relative with the major or mild neurocognitive disorder (NCD), other neuropsychiatric conditions, or functional impairment. (Kaminishi, Reza, and Hirsch 692)

Furthermore, there are many books and manuals for caregivers on how to behave around their relatives. However, there is barely a dozen of books aimed at helping the caregivers cope with the levels of stress, responsibility, and exhaustion they are going through every single day. Silent Struggler: A Caregiver’s Personal Story is a book written by Glenn Mallette through the prism of his personal experience of taking care of his wife. Hence, the book itself is a manifesto for those who encounter the same challenges on a daily basis, which encourages them to make their life fulfilled again.

Book Resume

Published in 2000 by Inspiration Press, Silent Struggler – an autobiographical novel, which reflects the author’s struggles and achievement throughout his caregiving journey – became Glenn Mallette’s debut in the writing career. While at first, Mallette had no intention for this book to become a best-seller, the idea behind actually paying attention to the caregivers’ community found quite positive feedback within both the target audience and religious community. The latter finds his works as an example of how a fellow human might find redemption in devoting one’s life to taking care of a soulmate while undergoing a series of challenges and desire to give everything up. With quite a little information given about the author, it is only possible to outline that Glenn Mollette has been a president of the Newburgh Theological Seminary for a long time, combining his work with a variety of hobbies such as songwriting. Thus, when looking at Glenn’s life, in the long run, one might reach a conclusion that his experience in finding fulfillment as a caregiver might actually be beneficial for those in the same situation.

Brief Summary

Silent Struggler: A Caregiver’s Personal Story is divided into a variety of chapters dedicated to the different aspects of taking care of a relative. Each of the thirty-nine presented chapters is devoted to a certain issue one might face when caregiving, with the range of issues tackling organization of chores, personal concerns, belief, and purely organizational matters like finding financial support for the process. The value of the story lies in the author’s first-hand experience with each of the discussed issues, which Mallette justifies by providing a number of examples. To obtain a better perspective of the book, some of the major concepts addressed in the book will be outlined in the following review, adding some personal ponderings of the notion of caregiving as a whole.

Is It Normal to Feel Exhausted?

When people create a family, they subconsciously accept the obligation to be around their loved ones both in sickness and health, regardless of what others say about them. However, quite often, this obligation hides an unbearable level of responsibility for other’s life underneath. Once a person is faced with such a challenge, the enthusiasm of always being around fades away with every day he or she gives up personal life. The tension doubles when people outside of the family start to express their rather judgmental opinion on how caregivers should look after their relatives, emphasizing on the inappropriateness of them feeling tired or depressed.

In his book, Mellette tries to convey the idea of allowing oneself to live through the fatigue he or she experiences from round-the-clock caregiving. In his perception of the issue, one of the most crucial factors that contribute to the constant feeling of guilt and self-loath is the external social pressure, especially that of the close surroundings. In the caregivers’ defense, the author states:

They don’t live in my house. They don’t know the pressures I have to deal with. Tending to the needs of a chronically ill patient three-hundred-sixty-five-days a year is vastly different than spending the weekend. (Mallette 133)

Thus, when people are remotely acquainted with the idea of caregiving without having experienced this on a long-term basis, they have no right to say how the person dealing with it first-hand must and should be feeling. This thought might provoke the reader to contemplate whether the ones bringing so much toxicity to their lives are worth being present in it, especially when the things are already not as they used to be. Even if they mean no harm by commenting on the way caregivers act, should not they be supportive enough to omit these subjective observations at all? Hence, while it is absolutely normal to accept the fact of being worn out, the real issue lies within one’s refusal to accept the right to feel down.

The Power of Empathy

Taking care of a loved one has a tremendous influence on the person in both physical and mental ways. On the one hand, the caregiver is to be physically responsible for two individuals twenty-four hours a day, making it of paramount importance to have a proper rest in order to maintain the health of a relative. On the other hand, seeing how a beloved relative is suffering from something one cannot help takes its toll on the mental health and overall emotional stability. Many people who find themselves in such a situation believe that they have no right to be upset around their relatives in order for them not to be even more upset about everything going on around them. However, according to the author of Silent Struggler, there is no point in hiding these emotions for them to destroy the individual inside, as when people love someone, they inevitably share every single emotion with them. Speaking of his wise, Mallette reflects:

I have seen Karen Struggle and weep. I have struggled and wept with her. She has been in the depths of despair. I have been in the depths of despair with her. You can’t love someone and care for them and stand idly by and watch them battle extreme physical and emotional pain without paying a toll. Sometimes the price is tremendous. (Mallette 137)

This passage reflects all the struggles caregivers deal with when observing their loved ones getting hurt. It goes without saying that for what it is worth, these people are willing to give the relatives everything they possibly can just to ease their physical and emotional pain. Many people, in such cases, try to hold on a little longer by distracting their relatives from reality, while everything they do is doing their best to drift from it themselves. Such an emotional block eventually leads to a lack of understanding between caregivers and relatives, causing stress and depression for both of them.

For this reason, Mallette’s book is aimed at proving that the power of empathy and compassion is often undermined by false beliefs in positive thinking prevalence in the caregiving process. Indeed, craving for the best for one’s care receiver is if crucial importance in the long term. However, when it comes to the day-to-day basis, it is barely possible always to do the right thing for everyone. When something becomes a severe obstacle, the caregiver should not pretend that everything is going according to the plan in order not to make someone upset. Life is not fair, it often makes everything go wrong in a blink of an eye. It is the caregiver who is always there to make these wrongs even slightly more tolerable.

Belief

When taking care of a chronically ill person, people tend to respond to the situation emotionally in quite different ways. Some people feel like they are betrayed when they see the struggle of their loved ones. As a result, they refuse to accept any belief in the better future, especially when it comes to the power of God and faith, as they no longer feel the support from someone who failed their relatives. Others, however, believe in the power of faith due to a strong desire to have something to rely on during their battle for the life of patients. While each of these choices is a highly individual matter, the former option is more likely to let one’s strength and hopes down due to a lack of encouragement to drive people. However, when people have something to believe in, not necessarily correlated with religion directly, their chances to hold on for a little longer are considerably higher, as they subconsciously feel they are not alone on this journey.

In Silent Struggler, the author explicitly emphasizes the importance of the Lord’s presence in their family when they were faced with the majority of changes. When feeling completely exhausted and lost, Mallette sincerely believed that God was the only one he could turn to for support and encouragement. The author’s relationship with religion is quite evident throughout the whole story, as some of the major climaxes in the journey of caregiving were symbolically related to an inexplicable intervention from above. Thus, in the chapter called “One Night,” Mallette dwells upon a story that happened on an ordinary day after dinner (Mallette). For a moment, his wife managed to feel a sudden burst of energy and strength in her legs. While crying, Karen was exclaiming her gracefulness to Lord, as He had finally heard her prayers. In fact, having an unbreakable faith in the powers above, both Glenn and his wife were coping with everything going on without giving up the desire to turn things back to the way they were. They were driven by this idea even though they realized that it was not possible.

Taking this into consideration, it should be emphasized that Glenn Mallette was paying much attention to the power of faith in God in terms of his family’s battle. Such an example does not mean that caregivers have to turn to religion when feeling burned out. In fact, forcing oneself to believe in God at times of misfortune will not make anyone happier with the way things are at the moment. The real message here was to find something that keeps people positive about their purpose in this life, as taking care of an ill person without inner purpose and faith ends up in an ongoing contemplation whether all of this is worth it. These thoughts, in their turn, make a caregiver feel guilty about feeling this way, turning back to the burden of self-loathe once again.

Financial Support

When speaking of the responsibilities of a caregiver, one would probably think of a person who helps their relatives dress, take a bath, go up and down the stairs, or buy groceries. Indeed, these are the duties caregivers face on a daily basis, not taking into consideration dozens of other little chores and emotional support around the clock. However, few people think of the financial basis of this care provision. In fact, it is one of the most challenging and depressing aspects of providing assistance, as the caregiver is responsible for the full-scale financial support of the patient. Whether it concerns making enough money to sustain the treatment and life or maintaining communication with healthcare facilities like Medicaid, the mental pressure is enormous.

In the Silent Struggler, Mallette addresses personal struggles correlated with the issue of finding healthcare aid programs and a series of red tape pitfalls hiding beneath projects-messiahs for people in similar situations:

On the surface, Medicaid sounds like an answer to many of our prayers, but it is not. In order to qualify, you must prove you are financially without means. A married couple with one spouse working does not qualify. However, if the working spouse divorces the invalid, leaving them with nothing, the long-term care facility will confiscate what little assets are left from the patient, and then Medicaid will take over the cost of the nursing home. (Mallette 158).

In fact, when seeing the heading of the chapter, the reader seeks redemption for their struggle, hoping to find an answer to the question that has been following them for years. However, the content of Mallette’s story is not intended to describe a how-to manual of securing one’s financial state. Instead, the idea could be interpreted as a desperate need to express the overwhelming burden of finding the needed support in a capitalistic system full of bureaucracy and inequality in terms of basic human needs. On the other hand, such an approach to the issue develops the ground for further collective effort development aimed at raising the issue on the global level.

In conclusion to the following chapter, Mallette advises all the caregivers to pool their efforts in the battle with authorities for providing quality support for the families with ill members. He emphasized the importance of demanding appropriate policies, even despite the fact that some caregivers might feel too exhausted to be emotionally engaged in other endeavors. In fact, such a position is one of the best options to address the issue, as it would be a mistake to give people too much hope for a better future instead of encouraging them to fight for it in their own ways.

The Book’s Value

Today’s segment of self-help literature is replete with a variety of books dedicated to some practical advice for almost any field of professional and personal life. However, while some people are actually seeking a set of tips aimed to help them deal with their issues or at least start to think in the right direction, others just want to know that they are not the only ones who feel desperate. Glenn Mallette’s primary goal was not to tell people the rights and wrongs of taking care but to show people that there is a huge community of like-minded caregivers that face the same issues on a daily basis. The courage to share with the world real feelings and thoughts of caregivers is a huge step in the direction of starting a community dialogue about the concept that was kept silent for quite a long time.

Moreover, the following book, although closely correlated with religion, has nothing to do with the evaluation of one’s actions, as it is frequently the case with religious authors nowadays. Instead, Mallette emphasizes the importance of giving oneself credit for the tremendous work caregivers perform every single day. Hence, Silent Struggler is a manifest to the people who sacrifice their lives for the sake of their loved ones. Having no step-by-step manual on how to deal with the given situation, this book provides the reader with the encouragement to continue what they do in spite of all the obstacles coming on the way. Taking everything into consideration, caregiving, when regarded not as a plain process of taking care of a relative, is a sophisticated construct that encompasses a great deal of physical and mental strength to cope with seemingly easy everyday chores. Silent Struggler: A Caregiver’s Personal Story is a book written by Glenn Mallette in order to assist people along their journey of support and sacrifice.

References

Gérain, Pierre, and Emmanuelle Zech. “Informal Caregiver Burnout? Development Of a Theoretical Framework to Understand the Impact of Caregiving.” Frontiers in psychology, vol.10, 2019, p. 1748.

Kaminishi, Kurtis S., Reza Safavi, and Calvin H. Hirsch. Geriatric Psychiatry. Springer, 2018.

Mallette, Glenn. Silent Struggler: A Caregiver’s Personal Story. Inspiration Press, 2000.

Introduction

Social policies such as the Family and Medical Leave Act (FMLA) and Paid Leave (PL) proved its efficiency in support of the society members that need care for themselves or to their close ones. It helped women to gain an equal role in society and have a work-life balance. Maternity leave is the main way the FMLA is applied for most of the time. However, it also includes the cases when the family member needs assistance due to health concerns. Thus, FMLA and PL should integrate additional monthly payments for employees due to an increase of population among older adults.

Statement of the Problem

The main audience of the given policy memo is State Legislator due to their competence in the FMLA and PL issues. The main problem is that close relatives are the social capital that older people can rely on in difficult life situations and which helps solve important aspects of their current lives (Weber, Harrison, Steward, & Ludington-Hoe, 2018). The help of relatives becomes significant and indispensable for the elderly. For older people in need of medical care, including long-term medical supervision, assistance, and attention due to a chronic illness or disability. Rehabilitation treatment during rehabilitation, medical care for exacerbation of chronic diseases, malaise, colds, except medical workers, an important element of support, and care for patients are relatives or friends (Arellano, 2015).

Overview of the Problem

The lack of the option of the paid leave in most of the states of America is a significant issue that needs to be resolved in the context of the FMLA and PL. Only two locations today have such a policy that enables to get the paid leave in case of the disease of the close relative (Arellano, 2015). The fact that today, compared to past more women are employed makes a need for the introduction of the program that allows providing care for the elderly family members (Feinberg, 2018a).

Description

High rates of population aging and an increase in the life expectancy of older people naturally stimulate growth in the need for expensive medical care and long-term care. In the composition of the total income of persons of retirement age, services provided an account for 45% (Weber et al., 2018). There is a wide variety of forms of service provision. With regard to long-term care services, there are various complexes of services at home, in medical geriatric clinics and in specialized homes for the elderly.

The number of hospitalizations and the length of stay in medical facilities is significantly reduced if an older person can receive a wide range of support at home. The infrastructure of inpatient support is very diverse because it includes traditional nursing homes, where the elderly are constantly looked after (Arellano, 2015). However, there are also apartment-type homes in which older age groups support an independent lifestyle, but if necessary, they have the opportunity to seek medical and household services. Inadequate funding of long-term medical and household services for older age groups can have a devastating effect on the financial situation of older adults, especially women (Weber et al., 2018). They are much more likely to be at risk of poverty due to lower pensions, including due to interruptions in employment, and length of life.

Recommendation

The primary stakeholders can be classified as caregivers and employers, who provide social and medical insurance for their workers. In addition, it is important to involve specialized government agencies, who specialize in FMLA and PL (Weber et al., 2018). The recommendation is derived from the healthcare systems of other European countries. These suggestions can be partially or fully integrated into the current medical sector. Often, the organization of home care for sick relatives can be resolved using special unpaid leave for care. Such kind of long vacations are valid, for example, in Belgium, France, Spain, Denmark but in many cases this vacation is not legally required, and the employer may refuse to grant it. In addition, long holidays are not paid (Arellano, 2015). In Germany and Austria, the duration of care leave can be no more than six months, in the UK and the Netherlands up to three months. Cases of payment of long vacation by the employer are quite rare. In Japan, parental leave of up to 98 days is paid at a rate of 40% of the employee’s salary (Arellano, 2015). In Denmark, in the event of an employer refusing to pay the employee a relative care allowance, local authorities can cover up to 82% of the estimated amount of this allowance (Weber et al., 2018).

The given recommendation addresses the limitations of the US healthcare system, which is the lack of FMLA and PL targeted at older adults. In the Scandinavian countries, such as Denmark, Finland, Norway, and Sweden, benefits for caring family members are considered as payment for their labor. Municipal structures responsible for organizing long-term services for needy citizens hire relatives for these purposes. In Finland, this payment varies in different regions but is no less than the official minimum wage. In other countries of Northern Europe, the corresponding fees are equivalent to the hourly wages of ordinary household assistants, but they also mainly fluctuate around the minimum wage. In Anglo-Saxon countries, such as Great Britain, Ireland, Australia, and New Zealand, caregivers are assigned benefits after a need assessment and are considered as compensation for lost earnings (Weber et al., 2018). In addition, the recipient of services can also be granted benefits or disability pensions.

The medical care allowance for a helping family member, assigned after a need assessment, is usually provided only to those who are exclusively concerned with the care, and the criteria for paying it are quite strict. Therefore, for example, in the UK adult relatives take care of it no more than 10%, and the payment itself is accompanied by the development of a support plan (Feinberg, 2018b). It includes a method for vocational training and retraining of the recipient, developed by local social services. In France and the Netherlands, there are formal hiring programs for relatives to care for needy family members, except for spouses in France. In these cases, specialists determine the necessary volume of services, and their financing is provided at the expense of cash benefits provided to the needy (Arellano, 2015). Thus, to describe the relationship between family and state participation in elderly care, the “complementary model” is most appropriate. According to it, the state resorted to assistance mainly when the needs of an older person exceed the ability of the family to provide support. Therefore, the active participation of the family in caring for elderly relatives allows the state to save on costs.

Conclusion

In conclusion, the formation of the caregiver-friendly workplace in the US could positively affect workforce productivity and overall satisfaction with the job. In the future, the financial cost of long-term services will increase. Economically developed countries have developed and apply extremely diverse models for organizing and financing such services. There are universal programs in ten countries of this group, where the package of services includes both medical care and household services. At the other end of the spectrum, state assistance is provided only to those who do not have their sources to finance payment for services or have completely exhausted them. In addition, there are various mixed programs.

References

Arellano, J. (2015). Don’t leave U.S. behind: Problems with the existing Family and Medical Leave Act, and alternatives to help enhance the employee work-family relationship in the 21st Century. SAGE Open, 1(2), 2-19.

Feinberg, L. F. (2018a). Breaking new ground: Supporting employed family caregivers with workplace leave policies. AARP Public Policy Institute, 136(1), 1-28.

Feinberg, L. F. (2018b). Paid family leave policies are not just for new parents [Blog post]. Web.

Weber, A., Harrison, T. M., Steward, D., & Ludington-Hoe, S. (2018). Paid Family Leave to enhance the health outcomes of preterm infants. Policy, Politics, & Nursing Practice, 19(2), 11–28.

The practical area of the researchers

The article under consideration is called Association of Low Caregivers Literacy With Reported Use of Nonstandardized Dosing Instruments and Lack of Knowledge of Weight-Based Dosing. The researchers that worked on this paper are specialized in the sphere of pharmacology and healthcare. Doctor of Medicine, Shonna Yin devotes her life to medical expertise as well researches the field of healthcare service. Dr. Yin obtained her Bachelor’s degree in Biology from the Massachusetts Institute of Technology. She was engaged in the Medicine and Public Research Fellowship program and after that Dr. Yin received a Masters of Science degree in Clinical Investigation (Langone Medical Center 2009). Like Dr. Yin, Bernard Dreyer earned the medical degree in NYU School of Medicine that was succeeded by the completion of Albert Einstein College of Medicine (Langone Medical Center 2009).

Together with Alan Meldensohn, the Assistant Professor of Pediatrics, Dr. Dreyer was interested in such fields of study as healthcare and childcare literacy improvement. In particular, Alan Mendelsohn received his degree from SUNY Stony Brook (Langone Medical Center 2009). Linda van Schaick is involved in the study of parent literacy thus devising the Health Education and Literacy for parents. She graduated from Bank Street College of Education where she obtained a Master’s Degree in Infant Development and Parenting (Langone Medical Center 2009). Dr. Foltin is an Associate Professor that received his medical education at SUNY. His achievement and research are predominantly dedicated to Pediatrics (Langone Medical Center 2008). Therefore, the authors of the given paper have much in store to work on and contribute to the study of healthcare and parenting literacy.

The main purpose of the article

The article touches upon the questions of caregivers’ literacy that causes many problems with doses of liquid medications. As the doses are not measured in the proper way, that may lead to lethal outcomes for the patients, especially if the patients are children. The lack of knowledge contributes to the increase of dosing errors. Considering this, the article is aimed at evaluating the level of the caregivers’ literacy and analyzing the outcomes of these problems. In addition, the researchers plan to investigate the connection between medication errors and nurses’ literacy and to establish the extent of importance to provide comprehensive education for the healthcare staff.

The research points

In the article, the researchers have found out that low literacy has a negative impact on healthcare management. The caregivers with insufficient education level have considerable difficulties with medication handling that is especially crucial in dosing for infants. The researchers display the reasons for the weight-based dosing and its potential dependence on healthcare staff competence. The article also touches upon the point of the now standardized use of the dosing tools for children such as teaspoons and tablespoons so that the researchers try to define the potential negative outcome of the caregivers’ ignorance. Moreover, the professors search for some other consequences for low health literacy. In addition, the matter of parenting literacy is also crucial for the research

Literature reviews and their relevance

The paper has many references to the specialized literature that are included different aspects of the article and therefore they are rather useful for the research. The literature is applied directly for the research and for the statistics of caregivers’ errors in pediatrics. Additionally, the researchers extract numerous facts and basic information about the essence of medication dosing problems. The authors refer to the specialized medical literature in order to make accurate calculations and conclude the corresponding results.

Consequently, the sources used by the researcher directly relate and to the scope and goals of the research as they are used as guidelines for the scholars to develop their own ideas. Hence, the literature review includes the study of different problems in the field of pediatrics and what possible medication tools are used by professional caregivers. The study shows that the references are the various sources that encourage healthcare literacy in more detail.

Patient target

As it was mentioned before, target patients are the children that are treated by the caregivers who visit the patients in the early hours. The age category of children varied from 30 days up to 8 years. The number of family studies was 640. The children were of different nationalities and gender as well for the analysis to be more accurate (Yin 2007 p. 293).

The core methods of study

In their study, the authors use numerous approaches and methods. Hence, the article focuses on the study sample presented with the cross-sectional analysis of caregivers and parents in terms of pediatric service at Bellevue Hospital Center. To carry out the analysis, the authors gather information about the caregivers and the quality. Further, Dr. Yin et al (2007) define the dependent and independent variables presented with the caregiver application of the no standardized dosing tools and the health literacy.

The paper also includes the statistical analysis consisting in the evaluation of health literacy and the relevant use of the no standardized instruments in medication dosing. By means of these methods, the researchers intend to check the health literacy scores. This method also helped to clarify the sociodemographic characteristics of the healthcare staff. In that regard, the scholars presented the descriptive analysis of the data obtained in the form of the tables that enlarge on the digital information about caregiver health literacy, child characteristics, caregiver and household characteristics, and the way the child health related to the dosing experience. Another two tables provide an adjusted analysis of the descriptive data concerning the dependent and independent variables facts.

Consequently, the major methods applied in the research are descriptive analysis and sample study. In addition, the methods become rather efficient, as they are evidence-based.

The results and findings of the research

According to the methods used in the study, the researchers’ results are the following. First of all, among the families that actively participated in the research, some families identified the caregiver’s inability to communicate so that they were unable to treat the child in the proper way. In general, the statistic shows that only 292 caregivers were included in the analysis, including 258 mothers, 30 fathers, and 4 other caregivers interviewed (Yin 2007, p. 294).

According to the analysis of healthcare literacy, caregivers’ competence largely depends on the language of education. In that regard, according to the Test of Functional Health Literacy in Adults, the caregivers educated and administered in Spanish have lower scores than those dispensed in English.

According to the analysis of the dependency of caregivers no standardized use of dosing tools on health literacy, most caregivers use teaspoons and teaspoons, and tablespoons as medication instruments; some caregivers are not aware of the actual importance of dose weighting.

The results also prove that caregivers with a low level of medical competence are more inclined to use the irrelevant tools in comparison with caregivers of adequate health literacy. It is logical that those who lack medical knowledge are more like to ignore weight-based dosing than those with sufficient professional level. Therefore, the connection between the health literacy caregivers’ competence and medication dosing errors is evident.

The value and practical use of the research

The research is of great practical value since it helps to define risk factors of healthcare staff literacy. The article also reveals the degree of administration errors in terms of medication dosing thus showing evident negative consequences that are worth consideration. Secondly, the authors have concluded that though the research has little importance in the logistic regression analysis, it has given rise to the problem of cultural issues in education. Thirdly, the study makes sense in identifying the connection between the appropriate medication use and education as well. It shows that there is much left for improving the healthcare service and health literacy skills. Finally, according to the results, inappropriate use of the dosing tools has a different influence according to the child’s age. In that regard, the authors consider it necessary to resort to a detailed examination of this particular problem as caregivers’ ignorance of age specifics may even lead to a lethal outcome.

The thorough evaluation of the paper brings to the conclusion that research touches upon a wide range of issues connected with child treatment and the quality of medical care. Therefore, the article significantly contributes to the development of the field of Pediatrics.

Reference List

Langone Medical Center. (2008). George L. Foltin M. D. Web.

Langone Medical Center. (2009). H. Shona Yin, M.D., M.S. Web.

Langone Medical Center. (2009). Bernard Dreyer, M. D. Web.

Langone Medical Center. (2009). Alan Mendelsohn, M.D. Web.

Langone Medical Center. (2009). Linda van Schaik, M.S. Ed. Web.

Yin, S. H., Dreyer, B. P., Foltin, G., Schaic, L., Mendelsohn, A. L. (2007). “The Low Caregiver’s Lack of Knowledge of Weight Based Dosing and The Use of Nonstandardized Dosing”. Ambulatory Pediatrics, v. 7. Pp. 292-298.