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Patients with Terminal IllnessCohort Class of 2018Tarleton State UniversityResearch QuestionAre the social needs of the terminally ill effectively being met?HypothesesThe majority of the participants will report a lack of social interaction.Participants are more likely to have positive perceptions of their support systems. Participants are likely to report that they are unsatisfied with their personal relationships.Measurable ObjectivesAssess whether hospice agencies are meeting the needs of their patients.Assess if social needs of hospice patients are being met by caregivers and family members. Assess quality of life of hospice patients especially regarding mental health.Hospice Patient Social Needs Survey Demographics 1.What is your age? _______________________________________________2. Please specify your race... _______________________________________________3. I identify my sexual orientation as: _______________________________________________4. How many children do you have? _______________________________________________5.Which religion, if any, do you associate with? _______________________________________________6. Have you served in the United States Military? _______________________________________________ If yes, which branch?Army B. Navy C. Marine Corps D. Air Force E. Coast Guard7. What is your highest level of education attained?No formal schooling B. Some high school C. High school or GEDD. Some college E. Bachelor's degree F. Master's degree8. What is your primary language? _______________________________________________General Questions9. How long have you been receiving hospice care?Less than 1 month B. 1-3 months C. 4-6 months D. more than 6 months10. Have you suffered from any diagnosed mental health issues within the past 6 months? Yes B. No If yes, please describe... ___________________________________________________________________________________________________________________________________________________________________________________________________ 11. Have you had any suicidal thoughts or tendencies while receiving hospice care? Yes B. No If yes, please describe... ___________________________________________________________________________________________________________________________________________________________________________________________________ 12. Do you feel safe sharing your thoughts and feelings with others? Yes B. No 13. How often do you feel lonely or isolated? 25% or less B. 50% or less C. 75% or less D. 100% or less 14. How much time do you spend outside of your room or home? 25% or less B. 50% or less C. 75% or less D. 100% or less 15. Do you have a hospice volunteer who visits with you? Yes B. No If no, do you want a volunteer to visit with you? Yes B. No 16. How often do you interact with those outside of the hospice staff or patients? Never B. Once a month or less C. Weekly D. Daily Personal Assessment Questions 17-32 are comprised of predeveloped questions by three modified preexisting instruments: Missoula–VITAS? quality of life index Version-25S, Social Support Questionnaire and Interpersonal Support Evaluation Lis.Circle which best applies to you: 17. I have recently been able to say important things to the people close to me. Strongly Disagree Disagree Agree Strongly Agree 18. I feel closer to others in my life now than I did before my illness. Strongly Disagree Disagree Agree Strongly Agree 19. In general, these days I am satisfied with relationships with family and friends. Strongly Disagree Disagree Agree Strongly Agree 20. At present, I spend as much time as I want to with family and friends. Strongly Disagree Disagree Agree Strongly Agree 21. I have a greater sense of connection to all things now than I did before my illness. Strongly Disagree Disagree Agree Strongly Agree 22. It is important to me to have close personal relationships. Strongly Disagree Disagree Agree Strongly Agree 23. Life has become more precious to me; every day is a gift. Strongly Disagree Disagree Agree Strongly Agree 24. My affairs are in order; I could die today with a clear mind. Strongly Disagree Disagree Agree Strongly Agree 25. Despite physical discomfort, in general I can enjoy my days. Strongly Disagree Disagree Agree Strongly Agree 26. When I need suggestions on how to deal with a personal problem, I know someone I can turn to. Strongly Disagree Disagree Agree Strongly Agree 27. I often get invited to do things with others. Strongly Disagree Disagree Agree Strongly Agree 28. If I wanted to have lunch with someone, I could easily find someone to join me. Strongly Disagree Disagree Agree Strongly Agree 29. There are several people that I trust to help solve my problems. Strongly Disagree Disagree Agree Strongly Agree 30. There is someone who takes pride in my accomplishments. Strongly Disagree Disagree Agree Strongly Agree 31. There are several different people I enjoy spending time with.Strongly Disagree Disagree Agree Strongly Agree 32. There is at least one person I know whose advice I really trust. Strongly Disagree Disagree Agree Strongly Agree Literature ReviewsBlack, B., and Kovacs, P. (1999). Age- related variation in roles performed by hospice volunteers. The Journal of Applied Gerontology, 18(4), pp 479-497. doi: 10.1177/073346489901800405 This research examines the variation in ages of volunteers in hospice programs. Volunteers of different ages display many similarities in their motivations for volunteering with hospice patients, how they learned about the services, satisfaction of care from patients, and retention rates. One of the core values of social work is competence. The research helps by focusing on the age of the volunteer, as it plays an important role as it affects patients as a whole. The study is relevant to social work because competence is something that may vary in volunteers of different age, which means levels of competence may vary as well. A strength of the article is the author’s ability to measure the results of differences between both younger and older volunteers. The author studies the fact that younger volunteers offer more direct services to patients, such as feeding, showering, or helping the patient move; whereas, the older volunteers usually work with clinical or office work. A limitation of the article is that the measurements are not completely explained. The results do not seem to have a detailed analysis, which accurately dissects the data. This topic relates to the research on social needs of hospice patients, as the ages of volunteers vary, which causes overall variation through volunteer’s duties. Hospice patients require specific services, which need to be addressed. Overall, the study informs the research plan by providing guidance and capturing focus on the volunteers’ age and how their age affects the experience of terminally ill patients. Chi, N., Demiris, G., Lewis, F., Walker, A., and Langer, S. (2016) Behavioral and educational interventions to support family caregivers in end-of-life care: A systematic review, 33(9), pp 894-908. doi: 10.1177/1049909115593938 This research focuses on the importance of ensuring that family members possess the ability to be caregivers for their family in hospice care during the end-of-life stages. The relevance of the article to the social work profession is the importance of human relationships. This article focuses on ensuring that the family can interact effectively with their family member while they are in the dying process, which helps the patients overall social and emotional needs be met. One strength of the article is that there are several tables, which provide an explanation of the collected data from the research. A limitation is that there seems to be too many tables. Although they provide a variety of important information, there is not much information otherwise that is not found in a table supplied by the research article. This topic relates to the research problem as the article’s research focuses strongly on the family of the terminally ill patients, and not only the patient themselves, as the effects of hospice are on both the patient and the family members. Overall, this topic informs the research plan by providing information and data results that provide the reader with the proper information to increase the knowledge on how to care for a terminally ill family member.Doughtry, M., Harris, P., Teno, J., Corcoran M, A., Douglas, C., Nelson, J., Way, D., Harrold, E. A., and Casarett, J, D. (2015). Hospice care in assisted living facilities versus at home: Results of a multisite cohort study. Journal of The American Geriatrics Society, 63(6), pp 1153-1157. doi: 10.1111/jgs.13429 This study focuses on patients living at home on hospice care, as opposed to the patients in an assisted living facility. The author expresses the feelings and emotions of the patients through this cohort study. This study focus is relevant to social work, because it concentrates on the dignity of humans. One strength of the article is the authors ability to express the feelings of patients in the two different environments: at home versus an assisted living facility. A limitation of the research would be that the researchers concentrated only on the elderly population with a chronic disease, as opposed to all ranges of age with a terminal illness. This topic relates to the research on social needs of hospice patients. The hospice patients require specific services which need to be supported, through emotion. Overall, the study informs the research plan by providing guidance on capturing the experiences and feelings of patients who are terminally ill.Egbert, N., and Parrott, R. (2003). Empathy and social support for the terminally ill: Implications for recruiting and retaining hospice and hospital volunteers. Communication Studies, 54(1), pp 18-34. doi:10.1080/10510970309363262 The research focuses on what characteristics to look for when recruiting hospice volunteers. The study is relevant to social work, because it explains the traits to look for in a quality volunteer and many of those traits should be traits a social worker should possess. The study helps the agency by determining what they could look for when recruiting volunteers. One strength of this article is that is helps find what is important to look for in a quality volunteer that will help with social needs. A limitation of this article is that it is geared toward hospice and hospital volunteers not just hospice, although they are similar they are not the same. This topic relates to the research problem because when finding volunteers to help with social needs you want to know what to search for to effectively meet those needs. Overall the study informs the research plan by giving quality traits of volunteers to help meet the social needs of the terminally ill.McKee, M., Kelley, M. L., Guirguis-Younger, M. (2007). So no one dies alone: A study of hospice volunteering with rural seniors. Journal of Palliative Care, 23(3) pp 163-172. Thirteen rural hospice coordinators were interviewed over the phone about the expectations of volunteers, the difference between rural and urban volunteering, and the similarities and differences between health professionals and volunteers. Each interview was recorded and carefully studied, then coded so that each segment fit within several main themes and subthemes. A core value of the social work profession stresses the importance of human relationships, and this study presents the value of the relationship between patients and volunteers. This article's strengths are that it speaks about the motivations behind being a volunteer, as well as explaining the volunteer's ideal role, which gives readers more information from the perspective of a volunteer. A limitation of this study is the method in which information was obtained. McKee, Kelley & Guirguis-Younger (2007) described the interviews as "loosely structured," because they were conversational and over the phone. This is a problem because it could lead to inaccuracy of the information as a result of the context within each interview (p. 164). This study relates to the topic of patient's social needs because volunteers provide services to specifically aid patients in attaining a sense of social and emotional well-being. The study informs the research plan by supporting the point that volunteers provide companionship to patients that improves their quality of life. O' Connell, M. E., Dal Bello-Haas, V., Crossley, M., & Morgan, D. G. (2015). Attitudes toward physical activity and exercise: Comparison of memory clinic patients and their caregivers and prediction of activity levels. Journal of Aging and Physical Activity, 23(1), pp 112-119. doi:10.1123/JAPA.2013-003 The study focuses on the attitudes towards physical activity and exercise, specifically with memory clinic patients and their caregivers, and prediction of activity levels. The study uses a QPAPAEQ questionnaire which contains four separate subscales. Questions are answered on a Likert scale from “strongly agree” to “strongly disagree.” The type of framework/theory is unknown for the article. Overall the sample size includes 51 patients and 43 caregivers. The social work profession works closely with the geriatrics population in that they are making sure their needs are being met. The agency is tied into this article closely because through Interim Hospice have memory care. One strength from the study that was conducted is that it was informative in a different perspective because it included family members who were a part of the patient’s life. One limitation was that while the information gained from the assessment was beneficial; more participants would have broadened the results. The topic relates to the social needs of the terminally ill because being part of physical activity and exercise prevents social isolation. The topic informs the research plan by discussing how the patients feel about the importance of social interaction. Oldfield, C. S. (2015). Hospice palliative care volunteers: A review of commonly encountered stressors, how they cope with them, and implications for volunteer training/management. American Journal of Hospice & Palliative Medicine, 33(2), pp 201 404. doi:10.1177/1049909115571545.ajhpm. This article focuses on stressors encountered with terminally ill patients who are on hospice care. Not only does the publisher express the negative emotions of the patients, the article also expresses the stressful encounters that the hospice volunteers also go through. The publisher focuses on the unmet needs of the patients, while also going into detail on how the volunteers try to meet those unmet needs. The study focus is compatible to the social work program, because it fixates on the worth of humans, and reveals the unmet needs that the terminally ill have encountered. One strength of the article is that, it expresses the emotion and stresses that the patients are living with in their last 6 months of life. A limitation of the research is that it does not explain how to cope, or fix the stressors that the patients are continuing with. The topic of the article relates to the social, emotional, and physical needs of patients who are on hospice. The patients depend on services that need to be supported. Overall, the research informs the reader by providing emotions and difficulties that the patients feel.Sanders, S., & Swails, P. (2011). A quest for meaning: Hospice social workers and patients with end-stage dementia. Social Work, 2, pp 129-140 The study explains social workers and their role working with hospice and patients with end-stage dementia. The type of study was a qualitative study. It is considered a qualitative study because of the way the information was given to the participants. It developed research and let the participants give their own insight on the questions asked. The framework that was used is symbolic interactionism. Symbolic interactionism is maintained with human interaction which includes individuals or groups. In this study this interaction affects the patient with end-stage dementia. The attitudes of social workers who have had experience with dementia based patients influence how they are going to analyze therapeutic relationships with diagnosed patients. The sample ranged from 100 to 285 patients. The amount of hospice social workers who participated in the focus groups were 43 (38 were female social workers and 5 were male social workers. From a social work perspective all of the core values need to be applied in working with end-stage dementia patients. Social workers values include respecting the “dignity and worth of a person” This specific strength is lacking in the article because social workers do not care to work with the population. As a social worker it is our job to always have respect and want the client best interest. Interim Hospice has patients with end-stage dementia who struggle with receiving proper treatment. A strength of the article is that not many hospice social workers are connected to the population of end-stage dementia patient which is rare, because of this the article information is making social workers more aware of the population. A limitation is the information designated in the report is only five hospice agencies are used. Using only five agencies hospice does not allow the information to be diverse that is collected. With more hospice agencies involved the collected data would give more different views. The topic relates to the problem of social needs being met by providing research on group settings and social values of interactions with patients and social workers. The topic informs the research plan by analyzing what needs to be changed for the patients with end-stage dementia and the social workers in this job area.Sandsdalen, T., Hov, R., H?ye, S., Rystedt, I., Wilde-Larsson, B. (2015). Patients' preferences in palliative care: A systematic mixed studies review. Palliative Medicine, 29(5) pp 399-419. doi:10.1177/0269216314557882 This study focuses on patient experiences in palliative care in order to understand the needs for future clients. Using a systematic mixed studies review, the researchers extracted data from 13 qualitative, 10 quantitative and some mixed methods studies using patients with various illnesses within several settings such as hospitals and nursing homes. From these studies, common themes were found that could be used in order to effectively guide practice to meet the needs of future patients. One of the core values of social work that is highlighted by this study is dignity and worth of a person. The research supports this by focusing on the importance of improving quality of care for patients based on the preferences of previous palliative care patients. One of the strengths of this article is the wide range of patient experiences including various illnesses and settings. One limitation of this article is the lack of reporting from those who are 18 and under, as they are left out of this study. The main point of this article supports the research topic of understanding the social needs of those who are receiving hospice care because it gives specific areas of growth for medical professionals and hospice care. Overall this study informs the research plan by providing information on the specific wants and needs of patients who are terminally ill. Schusterschitz, C., Flatscher-Thoni M., Leiter-Scheiring, A., and Geser, W. (2014). Building a committed hospice volunteer workforce: Do variables at the experience stage matter? Journal of Community & Applied Social Psychology, 24, pp 422-438. doi: 10.1002/casp.2182 The research focuses on the commitment of hospice volunteers based on their experiences. Meaning that if the volunteer feels that they are getting what they want out of the volunteering they are more likely to continue. One of the core values of social work is service, and volunteering is a good way to serve. This research helps social workers recognize that if they are getting what they want out of the population they are serving it will be easier to continue to serve that population. One strength of the article is it fully observes what a committed volunteer looks like and how to successfully be able to obtain these volunteers. A limitation of the article is that it talks about what makes a committed volunteer but does not talk about how to help make someone become committed. This topic relates to the research on social needs of hospice patients because volunteers in the hospice organizations are strongly encouraged for helping with the social needs of terminally ill patients. Overall the study informs the research plan by providing guidance on how having good experiences while volunteering can increase the chances to having committed volunteers.ReferencesBlack, B., and Kovacs, P. (1999). Age- related variation in roles performed by hospice volunteers. The Journal of Applied Gerontology , 18(4), pp 479-497. doi:10.1177/073346489901800405Byock, I. R., & Merriman, M. P. (1998). Measuring quality of life for patients with terminal illness: the MissoulaVITAS? quality of life index. Palliative Medicine, 12(4), 231–244. doi:10.1191/026921698670234618Chi, N.-C., Demiris, G., Lewis, F. M., Walker, A. J., & Langer, S. L. (2015). Behavioral and educational interventions to support family caregivers in end-of-life care: A systematic review. American Journal of Hospice and Palliative Medicine, 33(9), 894–908. doi:10.1177/1049909115593938Doughtry, M., Harris, P., Teno, J., Corcoran M, A., Douglas, C., Nelson, J., Way, D., Harrold, E. A., and Casarett, J, D. (2015). Hospice care in assisted living facilities versus at home: Results of a multisite cohort study. Journal of The American Geriatrics Society, 63(6), pp 1153-1157. doi: 10.1111/jgs.13429 Egbert, N., and Parrott, R. (2003). Empathy and social support for the terminally ill: Implications for recruiting and retaining hospice and hospital volunteers. Communication Studies, 54(1), pp 18-34. doi:10.1080/10510970309363262McKee, M., Kelley, M. L., Guirguis-Younger, M. (2007). So no one dies alone: a study of hospice volunteering with rural seniors. Journal of Palliative Care, 23(3) pp 163-172.O' Connell, M. Bello-Haas, V. Crossley, M. and Morgan, D. (2015). Attitudes toward physical activity and exercise: Comparison of memory clinic patients and their caregivers and prediction of activity levels. Journal of Aging and Physical Activity, 23, pp 112-119. doi:10.1123/JAPA.2013-0035 Oldfield, C. S. (2015). Hospice palliative care volunteers: A review of commonly encountered stressors, how they cope with them, and implications for volunteer training/management. American Journal of Hospice & Palliative Medicine, 33(2), pp 201-204. doi:10.1177/1049909115571545.ajhpm. Sanders, S., & Swails, P. (2011). A quest for meaning: Hospice social workers and patients with end-stage dementia. Social Work, 56(2), 129–140. doi:10.1093/sw/56.2.129Sandsdalen, T., Hov, R., H?ye, S., Rystedt, I., Wilde-Larsson, B. (2015). Patients' preferences in palliative care: A systematic mixed studies review. Palliative Medicine , 29(5) pp 399-419. doi:10.1177/0269216314557882Sarason, I.G., Levine, H.M., Basham, R.B., et al. (1983). Assessing social support: The social support questionnaire. Journal of Personality and Social Psychology, 44, 127- 139. doi:10.1037/0022-3514.44.1.127Schusterschitz, C., Flatscher-Thoni M., Leiter-Scheiring, A., and Geser, W. (2014). Building a committed hospice volunteer workforce: Do variables at the experience stage matter? Journal of Community & Applied Social Psychology, 24, pp 422-438. doi: 10.1002/casp.2182 ................
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