A Desire to Be Seen. Family Caregivers' Experiences of Their Caring Role in Palliative Home Care - Essay Example

? A Desire to Be Seen. Family Caregivers’ Experiences of Their Caring Role in Palliative Home Care: A Critical Appraisal Introduction The individual chosen for the paper is Mrs. James, Mr. James's husband (not his real name). Mr. James is a 70 year old gentile man that had been diagnosed with pancreatic cancer at a terminal stage. Mr. James does not wish to be admitted in a hospital or a nursing home, which is why Mrs. James had agreed to look after him at their home. This condition had been discussed with the General Practitioner, the district nursing team and the palliative care team, who agreed to Mr. James' conditions and chose to support his wife. She took on the role as Mr. James' informal care giver voluntarily as she values the time that she has left with her husband. However, there were instances when Mr. James was feeling severely ill and his wife was uncertain as to what needs to be done to attend to her husband. She immediately contacted the GP, the district nursing team, and the palliative care team for support. In spite of the fact that Mrs. James cherished the moments that she was able to care for her husband, there were times that she felt powerless and helpless. Her husband's condition caused her emotional and psychological stress. After several days of caring for her husband, she started to question whether she made the correct decision. The team opted to advise Mrs. James to undergo a two day intensive palliative care course at the Dorothy House as a means for her to overcome her distress. She felt that she must be able to have a strong grip and command of her emotions so as not to show any signs of insecurity, fear and anger. Seeing his wife strong made a big difference on Mr. James' passing. He died a peaceful death at his home. After Mr. James' death, the palliative care team went to Mrs. James to reassure her and offer her support. The main issues of the care plan constitute of the following: pressure area care; pain; challenges in looking after home; comfort; wife's/family's stress; promise to keep, access or the availability of palliative care team as and when needed; psychological support; and management of medication. The article that the researcher has chosen is entitled "A Desire to Be Seen - Family Caregivers’ Experiences of Their Caring Role in Palliative Home Care" by Linderholm and Friedrichsen (2010). Main Body (Part 1) The article "A Desire to Be Seen: Family Caregivers’ Experiences of Their Caring Role in Palliative Home Care" was presented clearly. The context of the study can be understood easily as the choice of words was succinct and direct to the point. The researchers began to elaborate on the definition of palliative care and the role it serves in primary health care. The researchers presented the fact that patients diagnosed with life threatening conditions who prefer to stay at home although being attended by health care professionals, require an informal caregiver in order for palliative care to be successful. The focus of the study is important because it presents the necessary care that must be provisioned to terminally ill patients in which most people are not aware of (Gerrish and Lacey, 2006). The aim of the study was to explore the experiences of an informal care giver of a dying relative who is admitted in a primary healthcare facility. The study intended to delve into the aspects of the caring role and support rendered during and after the patient's illness. The research aim was specific and well defined. Methodology The study employed a qualitative research design that made use of a hermeneutic approach. It is appropriate that the researchers have chosen a qualitative approach because the objective of the study is to explore the experiences of the informal care giver during the patient's illness and after they died. In that regard, the data gathered were interviews concerning the first hand account narration of the informal carers (Nieswiadomy, 2008). It is applicable in answering the aim of the study as a qualitative approach allows the participants to share information related to their experiences that cannot be culled from statistical data that is used in quantitative studies (Risjord, Moloney and Dunbar, 2001). The researchers do not aim to quantify the factors that affect palliative care; rather, they aim to explore the conditions of informal carers during and after the provision of care. The advantage of the methodology used is that the study was able to acquire the necessary information needed to answer the goal of the study, although the disadvantage can be rooted from the fact that such answers are subjective (Hek and Moule, 2006). In case that the researchers have chosen to employ a quantitative research design, the intent of the study must also be modified into a subject that can be quantified. Sample A purposeful sampling method was applied. This approach was used to acquire a variation in regards to the demographic information of the patient that ranges from the diagnosis, age, sex and relation to the patient (Graneheim and Lundman, 2004). The sample comprised of 13 family members, nine of which were women and the rest were men. The patients involved were all diagnosed with cancer. The participants chosen to be a part of the study have been screened through the inclusion criteria. If the researchers haven't established criteria for participants to be included in the study, then the findings would be inaccurate (LoBiondo-Wood and Haber, 2002). As for the ethical aspect, the researchers had provided both written and verbal information on what the study was about to the family members who would participate in the research. Those who have responded and gave their verbal consent were contacted by the researchers to set up an appointment. These ethical factors are important because the condition of the participants during and after dealing with a dying patient is a sensitive topic (Graneheim and Lundman, 2004). In that regard, a careful and sensitive approach must be used. The sample used in the study was sufficient to provide substantial data. Data Collection The setting where the interview would take place depended on the informants. Twelve interviews took place in the informants' respective homes and one was in the office of a district nurse. The process of interview was conversational in nature, though a guide was used to ensure that all points were covered. The questions mainly delved on the experiences of the informants in regards to caring for family members with illness. The manner in which the data was collected was appropriate because each interview was recorded by tape so that the researchers would be able to analyze the complete data as opposed to jotting down notes during the interview proper (LoBiondo-Wood and Haber, 2002). To ensure the validity of the collected data, the authors employed dialogical validation (Graneheim and Lundman, 2004). The data collection process couldn't have been carried out through a better alternative, because the informants were allowed to choose the place in which the interview would take place, thus allowing them to be comfortable in their own space (Hek and Moule, 2006). Data Analysis The method of data analysis and interpretation was guided by the Hermeneutic framework, as supported by the principles of Radnitzky (Risjord, et. al, 2001). The procedure entailed questioning the informant in a dialogue that comprises text, reflection and validation in a dynamic and respectful manner. Through this approach, data can be analyzed through interpretation, coherence and pre-understanding (Graneheim and Lundman, 2004). In the study, the pre-understanding factor can be attributed to the author's 15 years of experience of being a district nurse in a palliative home care. The data was analyzed based on the statements of the informant and the authors' knowledge. In essence, the interpretation of the collated data was carried out through comparing it with accessible literature that provided a reasonable sense and internal coherence (Nieswiadomy, 2008). If the authors did not thoroughly deconstruct the material they have acquired, the results of the study would've been purely objective. The method used was adequate as the hermeneutics approach covered one's own pre-understanding and the narrative provided by the informants (Ferrer and Coyle, 2001). Results In general, the results of the study presented that the palliative care team is necessary factor in order for them to carry on their roles as informal care givers. Most of those who have been interviewed shared positive and negative experiences and expressed their concern of having fulfilled such a role because of the support of the palliative care team. They have also realized that the caring role they have rendered is important for the patient with a terminal condition. Being an informal care giver required one to knowledge about the patient's condition and a great deal of self control (White, Coyne and Patel, 2001). In cases that the palliative care team is not able to identify the informal care giver's lack of knowledge in caring for the patient or they fail to identify their value through disregarding them, they tend to feel powerless and insecure (Davidson, Introna, Daly, Paull, Jarvis and Angus, 2003). The presentation of the data was well organized and precise. It showed that in general, the family care givers also felt vulnerable during the palliative phase. Since all the attention was given to the patient, they too, felt mixed positive and negative emotions. It implied that family carers also felt exhausted and used as caused by the role assigned to them, and they felt helpless when they are not acknowledged or valued (Hudson, 2004). During the palliative phase of the dying relative, the family caregivers were also affected as they exhaust all their efforts in caring for the person, but no one does the same for them. Feelings of insecurity, fear and anger well up; although they must be able control their emotions for the sake of their dying relative (Adam, 2005). The study implies that the relationship built between the family care givers and the professional care team is a critical factor for the informal carers. The role of the palliative care team helps the informal carers in guiding them how to provision care to their relative with knowledge, acknowledging their efforts and supporting them whenever they need it (Milberg, Strang and Jakobsson, 2004). There weren't ethical issues in the way the data was presented because the informants were not identified. The narratives were laid out accordingly through a sequence. The results are viable; as such cases are prevalent among families undergoing a similar scenario. In addition, it is generalisable. This factor is vital to the context of the study because if its not, the findings would be restricted and subjective; therefore, not attaining the study's objective. Main Body (Part 2) Analysis and Evaluation The results of the research present a similar scenario as to what happened to Mrs. James on the course of taking care of her husband. In becoming an informal care giver to a dying relative, family members feel that their participation is a prerequisite in engaging home care. Suffering relatives expect that family members or close friends would look after them as they choose to be medicated at home (Redfern, 2006). In that regard, the family care givers have to be knowledgeable of the patient's condition and it is imperative to manifest control over one's own demeanor (Kristjanson and Aoun, 2004). In addition, they must know when to consult or call the district nurses in the event that the patient's condition deteriorates. In most cases, informal care givers are bound by their moral duty, despite the manifestation of ambivalence and anxiety. In being a care giver, there was emphasis placed on shared responsibility and building relationships (Burnard, 2002). A good relationship must be built among the families of the patients and the district nurses and palliative care team to produce a clear dissemination of responsibilities. Communication problems and lack of guidance from the professional team generates frustrations among the family care givers. The informal care givers need to be acknowledged and valued, as they are people as well (Matzo and Sherman, 2001). Responsibility issues pertains to tasks inclusive of administering medications and changing dressing that are not inherent to family care givers, thus making it difficult for them to carry it out. Such tasks must be escalated to the professional team as they are trained to perform such duties (Byock and Twohig, 2001). Another issue presented was the promises vowed between the family and the professional care givers. This promise presents that in the event the conditions of the patient worsens, the patient would be admitted in a hospital. When the support falters, the feeling of security that is supposedly provided by the professional caregiver diminishes thus leaving family feeling helpless (Hudson, Aranda and Kristjanson, 2004). Another factor is the ability to control one's emotions. The findings are applicable in practice as it helps one to identify how to deliver a better service towards the stakeholders. Through the study, it becomes evident that the provision of palliative care does not simply focus on the patient, but the family care givers as well. Aside from the patient, they are the most affected group during the whole incidence (Benoliel, 2001). It helps one identify the important of building a strong relationship with the informal care givers in ensuring successful palliative care. It makes the professional team realize that the support and service rendered is crucial to the patient and his or her family (Kristjanson and Aoun, 2004). Patients rely on their family caregivers for strength and security, and showing signs of insecurity, fear and anger may break the patient's hope and will to live. The social responsibility demanded the informal care giver to be strong, in spite of the reality that they're at the brink of losing their control. As the transition proceeds, the role of a care giver ends (Benoliel, 2001). The phase in which they took on a significant role transitioned into a feeling of not being needed, thus making them feel empty. If the findings of the study had not been applied in practice, then the results of the palliative care would be negative. The inability of the professional team to morally and physically support the family care givers would adversely affect the condition of the patient (Byock and Twohig, 2001). If the terminally ill patient realizes that his condition is a burden to everyone around him, he would feel depressed and would quickly lose the will to hold on to whatever time he has left. This, in turn, would cause further consequences within the family. If Mrs. James had not been advised by the professional team to seek palliative care as well, she wouldn't have been able to attend to her husband properly. Mr. James wouldn't have died peacefully and she could've acquired illnesses brought about by the emotional and psychological stress she experienced. The death of a relative produces consequences, such as depression, which can result to poor health. The symptoms manifested by the informants in the study were loss of appetite, insomnia, depression, isolation and difficulties in concentrating. In spite of the negative implications, there were still positive feedbacks. Discussion The implementation of the findings of the study would help the professional palliative care team to provision the necessary care not only to the patient, but to the family care givers as well. Through such an approach, the whole process would produce a harmonious relationship among the two groups in caring for the patient, in spite of the difficulties of the obligations (Kovner, Mezey and Harrington, 2001). Building and maintaining proper relationships between the health care team and the family of the patient would help in preserving the best quality of life that the patient has until he passes away (WHO, 2004). The framework used in critiquing the paper is CASP. In line with the method of analyzing the provision of pallitaive care practice is to identify the present situation, what the care team intends to achieve and how it can be attained. Initially, it is important for the district nurses and the palliative care team to investigate the present state and policies available in the application of palliative care. It is important to include the aforementioned groups as they are the one responsible in provisioning the service (WHO, 2007). After the first step, it is necessary to formulate and adopt a policy in line with the intended objectives and the target population of the program. After the planning phase, the implementation of the practice would take place. It begins with the core implementation or the application of interventions that are currently feasible with the available resources. The expanded phase would be for the medium term period, with an expected increase of allotted resources. The desirable phase is the application of the whole program with all the necessary resources available (Stjernsward, Foley and Ferris, 2007). In that light, a resource plan must also be formulated this would outline the current available resources, the required resources and the potential tactics in acquiring the necessary resources from various sources. Resources usually take in the form of funds and work force (Davaasuren, Stjernsward and Callaway, 2007). The potential barriers that can be encountered in the adoption of the program are as follows: lack of palliative care approach in various services; cultural barriers; service gaps; lack of services in rural areas; framework and funding boundaries; lack of performance indicators; lack of workforce planning in provisioning palliative care; and poor integration of service variability (Ministry of Health, 2001). Conclusion Palliative care is offered to families whose member has been diagnosed with life threatening conditions. This type of care can be provisioned either at home or in the hospital, wherever the patient wishes. The goal of this approach is to make people realize that dying is normal and help in preserving the quality of life until the patient's last moments (CCO, 2006). It is an approach directed towards the patient, his or her family and the community. In essence, it serves to manage the symptoms of an illness, as well as the social, spiritual and psychological problems encountered. The research delved on the significance of the role that family members and the professional palliative care team play in the incidence of a relative with a terminally ill condition. Acquiring medical attention is not sufficient without the support and care of family members and friends. Terminally ill patients who prefer to stay at home and are not morally supported tend to lose hope and become depressed. In that regard, family members and friends are also put into a vulnerable position (Singerand Bowman, 2002). An individual dying adversely affects the health and well being of his family members and friends. The inability to relieve the condition of a dying relative causes physical and psychological symptoms to family members as brought about by feeling powerless. It is the role of the palliative care team to assist family members throughout the stressful transition of taking care of the patient (Kumar and Numpeli, 2005). Through working hand in hand with them, the informal caregivers would feel valued and involved despite the difficulties they experience. Through the effective collaboration of informal and formal caregivers, the quality of life of the patient would be preserved and the morale and confidence of the family members would be kept intact (Foley, 2003). References Adam, S.K. (2005). Critical care nursing, science & practice (2nd edn). Oxford Medical Publications, Oxford. Benoliel, J.Q. (2001). Textbook of palliative nursing. Oxford University Press, New York. Burnard, P. (2002). 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