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DIALYSIS SUPPORT GROUP AT SAN JOAQUIN GENERAL HOSPITAL DIALYSIS CLINIC A Project Presented to the Faculty of California State University, Stanislaus In Partial Fulfillment of the Requirements for the Degree of Master of Social Work By Angelina Y. Santillan May 2015 CERTIFICATION OF APPROVAL DIALYSIS SUPPORT GROUP AT SAN JOAQUIN GENERAL HOSPITAL DIALYSIS CLINIC by Angelina Y. Santillan Signed Certification of Approval Page is on file with the University Library Kilolo A. Brodie, MSW, Ph.D. Associate Professor of Social Work Date Katie Galvin, Ph.D. Assistant Professor of Social Work Date © 2015 Angelina Y. Santillan ALL RIGHTS RESERVED DEDICATION This project is dedicated to the amazing patients of the San Joaquin General Hospital Dialysis support group who inspire me to live life to the fullest and taught me to appreciate life everyday, no matter what your circumstances are. They are some of the strongest people I know and inspire me to continue this great calling as a social worker. iv ACKNOWLEDGEMENTS Above all things, thank you God for all your blessings and allowing me the opportunity to work in a field I love. I also want to thank you for bringing all of these wonderful people into my life that contributed to this project. Thank you to my amazing mother and father, sisters, brother in-law, and close friends that supported and encouraged me every step of the way. I could not have done this without each of you. I love you all. Thank you to the institutional review board at San Joaquin General Hospital for being so supportive of this project. A special thanks to Carla Bomben and Kathy Medeiros for your expertise and guidance in completing this project. Thank you to all the staff and social workers at the dialysis clinic for being supportive of this project and for the opportunity to work with your patients. Thank you to my project chair, Dr. Kilolo Brodie for your expertise, guidance, and support these last several months. And also for reminding me to take a deep breathe and relax in my times of stress. Thank you to my project reader, Dr. Katie Galvin for being another set of eyes on this project and for your positive feedback. v TABLE OF CONTENTS PAGE Dedication ............................................................................................................... iv Acknowledgements ................................................................................................. v Abstract ................................................................................................................... viii Description of the Project ....................................................................................... 1 Objectives of the Project ......................................................................................... 3 Significance of the Project ...................................................................................... 4 Review of Related Literature .................................................................................. 5 Categories of Social Support ...................................................................... Social Support and Quality of Life ............................................................. Challenges of Chronic Kidney Disease ...................................................... Lifestyle Changes on Dialysis ................................................................... A Collaborative Approach to Chronic Kidney Disease .............................. A Comparison of Face-to-Face and Online Focus Groups ......................... Consideration of Literacy Skills ................................................................. 5 6 6 7 8 9 10 Methodology ........................................................................................................... 12 Conclusion and Recommendations ......................................................................... 16 Objective # 1 ............................................................................................... Objective # 2 ............................................................................................... Objective # 3 ............................................................................................... Objective # 4 ............................................................................................... Recommendations ....................................................................................... Impact of the Dialysis Support Group ........................................................ The Role of the Facilitator .......................................................................... Limitations .................................................................................................. Implications for Social Work Practice ........................................................ 18 19 19 20 22 24 24 25 26 References ............................................................................................................... 29 vi Appendices A. B. C. D. E. Informed Consent........................................................................................ Dialysis Support Group Sample Flyer ........................................................ Dialysis Support Group Curriculum ........................................................... Dialysis Support Group Initial Survey........................................................ Dialysis Support Group Post Survey .......................................................... vii 33 37 38 54 58 ABSTRACT In the United States over 430,000 people undergo dialysis treatment annually to replace the functions of a healthy kidney. To measure the impact dialysis treatment has on patients’ quality of life, the Centers for Medicare and Medicaid (CMS) adopted indicators on the Kidney Disease Quality of Life (KDQOL) survey to evaluate patients’ perceptions of their quality of life. These indicators are: 1) Physical health, 2) Mental and emotional health, 3) Burden of kidney disease, 4) Symptoms and problems caused by dialysis treatment, and 5) Effects of kidney disease on daily life. Research has shown the positive influence of social support in the course of chronic illness. This researcher proposed the implementation of a dialysis support group at San Joaquin General Hospital, and developed a curriculum that addressed quality of life indicators specific to kidney disease. This project offered a unique opportunity for patients to discuss topics related to chronic kidney disease and dialysis, share information and experiences with each other, receive education, and to provide and receive emotional support. Patient evaluations suggested that participants of the dialysis support group gained increased knowledge of kidney disease and treatment options, and found this group to be an outlet to share experiences with other patients who also face the challenges of chronic kidney disease. The evaluation surveys also indicated that participants would benefit from further and continued education on physical and mental health to improve their perceptions of their overall health in relation to kidney disease. viii DESCRIPTION OF THE PROJECT According to the United States Renal Data System (USRDS), 430,273 patients with chronic kidney disease undergo dialysis treatment annually (2013). Dialysis is a treatment that replaces the functions of a healthy kidney, and is an ongoing treatment when chronic kidney disease progresses to kidney failure (National Kidney Foundation, 2014). Previous studies have acknowledged the influence of social support in the course of chronic disease (Untas et al., 2011), while the impact dialysis treatment has on patients’ quality of life has also been examined (Swartz, Perry, Brown, Swartz, & Vinokur, 2008). Following the completion of the annual Kidney Disease Quality of Life (KDQOL) and Centers for Medicare and Medicaid (CMS) surveys, management staff and the dialysis unit social workers at San Joaquin General Hospital discussed the formation of an onsite dialysis support group. The KDQOL is a validated and reliable instrument that measures multiple emotional and functional aspects of health specific to patients with kidney disease, and was adopted by CMS as a clinical performance measurement in 2008 (Medical Education Institute, 2009). The KDQOL considers five areas: 1) Physical health, 2) Mental and emotional health, 3) Burden of kidney disease, 4) Symptoms and problems caused by dialysis treatment, and 5) Effects of kidney disease on daily life. A support group will serve as an intervention for quality of life and address indicators on the KDQOL. 1 2 This researcher will develop a curriculum and implement a dialysis support group at San Joaquin General Hospital. The areas identified and measured in the KDQOL will guide the content and structure of the group. The curriculum (See Appendix C) will be research informed and based on topics specific to the needs of patients with chronic kidney disease. The curriculum will reference learning tools and literature approved by the KDQOL survey. A component of the support group will be to utilize community resources to provide education and information to the patients at the dialysis clinic. This researcher will also facilitate the pilot support group from October 2014-March 2015, under the supervision of the dialysis unit social workers. The original duration of the support group was proposed for September 2014February 2015. However, due to the Joint Commission survey at San Joaquin General Hospital, and to ensure space for the group was available, the duration of the pilot support group was changed to October 2014- March 2015. This pilot support group will be a closed group, only open to those individuals who are patients at San Joaquin General Hospital Dialysis Clinic, and not open to the community. OBJECTIVES OF THE PROJECT The objectives of this project are to: 1) Develop a curriculum that provides opportunities for patients to become more knowledgeable and informed about their health care decisions and treatment options, 2) Offer a safe outlet for patients to discuss the challenges of kidney disease, 3) Create a forum where patients can share thoughts and ideas about how to make kidney disease less of a burden in their lives, and 4) Improve patient perceptions of their physical and mental health related to kidney disease. 3 SIGNIFICANCE OF THE PROJECT Dunkel-Schetter indicated (as cited in Poole et al., 2001) that medical care was more effective when patients received educational and emotional support. Patients with kidney disease frequently receive recommendations from their care team providers, whether it is their physician, nurse, dietician, or social worker. However, speaking to others who have similar experiences provides a unique opportunity to share ideas about how to manage dialysis treatment with less stress. For example, Poole et al. (2001) suggested that in prostate cancer support groups, participants found information and advice more helpful from other patients, rather than from medical staff and family members. San Joaquin County currently does not offer a support group for patients with chronic kidney disease. While there are online discussion forums, blogs, and email lists connecting dialysis patients across the United States (Davita Healthcare, 2014), some patients may prefer face-to-face interactions. A support group for patients with chronic kidney disease is an opportunity to discuss topics related to kidney disease and dialysis, share information and experiences, receive education, and to provide and receive emotional support. A support group additionally allows patients an opportunity to make connections with others who are also coping with the challenges of kidney disease. 4 REVIEW OF RELATED LITERATURE Categories of Social Support Research has generally associated social support with improved health outcomes among a variety of acute and chronic illnesses (Cukor, Cohen, Peterson, & Kimmel, 2007). According to the National Cancer Institute (NCI, 2015), social support is defined as, “a network of family, friends, neighbors, and community members that is available in times of need to give psychological, physical, and financial help.” Langford, Bowsher, Maloney, and Lillis (1997, p. 96) proposed four types of social support: 1) Emotional support- the provision of caring, empathy, love, and trust. 2) Instrumental support- tangible assistance or services, such as financial aid or work for others. 3) Informational support- provides information to assist in problem solving in the form of education, advice, or suggestions. 4) Appraisal support- information that provides self-evaluation and affirms a person’s behavior. For the purpose of this dialysis support group project, the literature review will focus on emotional, informational, and appraisal support. The dialysis support group will provide opportunities for members to give and receive emotional support through listening and empathizing in a safe, welcoming, non-judgmental environment. Informational support will provide members opportunities to discuss 5 6 and receive education on topics related to kidney disease and dialysis. Appraisal support encourages members to share information and personal experiences, and also give constructive feedback to each other to better manage their chronic kidney disease. Social Support and Quality of Life In their review of social support among patients with chronic kidney disease, Patel, Peterson, and Kimmel (2005) suggested that a patient’s lack of perceived social support is linked to a higher risk for depression and mortality. In another study of social support and its associations with mortality and quality of life, hemodialysis patients reported their physical health interfered in their ability to engage in social activities, feelings of isolation, and feeling like a burden to loved ones (Untas et al., 2011). Research has shown that high levels of social support are correlated with an increased utilization of medical services and medical compliance (Schatell, 2013). These findings are consistent with those from Untas et al. (2011) who indicated that low levels of social support were connected to an increased risk for medical noncompliance in dialysis patients. Challenges of Chronic Kidney Disease Stress is a factor that patients with chronic kidney disease on dialysis cope with on a daily basis, as dialysis treatment requires significant adjustment to a new lifestyle (Swartz, Perry, Brown, Swartz, & Vinokur, 2008). Cukor et al. (2007) examined several biopsychosocial variables that are potential stressors among 7 patients on dialysis. These stressors include: disease and medication effects, family dynamics, role change, changes in employment, dietary restrictions, decreased mobility, financial constraints, loss of sexual function, relationships with dialysis staff, and awareness of impending death. Dialysis is a life-long treatment and often lasts for many years, for some until their death (Swartz et al., 2008). Other patients may discontinue dialysis treatment following a kidney transplant or when transferring their care to an end-of-life treatment such as hospice. Lifestyle Changes on Dialysis Chronic kidney disease requires becoming a more informed patient by developing an increased understanding of kidney disease and treatment options, learning new skills to manage the illness, and forming collaborative relationships with healthcare providers. Chronic kidney disease, as with other acute illnesses, involves the management of new medications and adherence to a strict diet, yet the addition of dialysis treatment makes this disease more intrusive than other chronic illnesses (Novak, Costantini, Schneider, & Beanlands, 2013). Dialysis is very time consuming and is usually necessary three times a week, lasts about four hours per treatment, and requires coordination of transportation to and from the dialysis center (National Kidney Foundation, 2015). Dialysis treatment causes disruptions in the routines of patients and their family members, and requires adjustment and commitment from both parties (Novak et al., 2013). 8 A Collaborative Approach to Chronic Kidney Disease Healthcare providers are responsible to ensure people with chronic diseases be provided the education and skills necessary to increase their confidence to manage their illness (Wagner et al., 2001). Social workers play a significant role in promoting patients’ quality of life in managing the challenges of kidney disease, engaging family and other health support partners, and are heavily relied on by the rest of the interdisciplinary team (Johnstone, 2013). Social workers have access to community resources and relationships with community healthcare providers, and can use these resources to provide education and motivation for patients to become more informed and active in their care. In their study of chronic illness management in healthcare organizations, Wagner et al. (2001) found that organizations benefitted from utilizing community resources, as these services were not always available within their own organization. Wagner et al. also indicated that increased access to the services of community healthcare partners was not only cost-effective, but promoted continuity of care (2001). In order to sustain a collaborative team approach, the curriculum of the dialysis support group designed by this researcher will follow an integrative practice model. The six-month curriculum of the dialysis support group will utilize resources from the community and partner healthcare organizations to address topics on a monthly basis that influence quality of life for people with chronic kidney disease. These areas include: Kidney transplantation, Exercise, and fall prevention. UC Davis 9 Transplant Center and a kidney transplant recipient formerly on dialysis, will address kidney transplantation, while the Rehabilitation Director for Gentiva Home Healthcare will address exercise and fall prevention. Each person will be a guest speaker at three different support group meetings, and present their knowledge and expertise in these areas. A Comparison of Face-to-Face and Online Focus Groups The purpose of this support group is to provide face-to-face interactions among patients on dialysis, and present opportunities for them to share information with each other and offer emotional support. Recently there has been a trend towards holding support groups online in the forms of email lists, message boards, chat rooms, and social media websites such as Facebook (Schatell, 2013). With the increasing popularity of Internet convenience, researchers are examining the advantages and disadvantages of face-to-face (FTF) and online focus groups. Abrams, Wang, Song, and Galindo-Gonzales (2015) suggested different tradeoffs between the FTF groups and online focus groups. In their research, they found advantages of FTF groups included having a facilitator to control discussion topics and encourage all members to participate in discussion to prevent dominance by a few members. FTF groups also provided opportunities for emotional connections, friendships, and collaboration among participants in their sharing of information and experiences (Schneider, Kerwin, Frechtling, & Vivari, 2002). Abrams et al. suggested the role of the facilitator could also be a disadvantage as they might have too much control of the discussions. Another disadvantage of FTF groups is that they can be 10 costly and time consuming, as they require finding an appropriate location, refreshments, preparation of material, and the time and travel of participants (Abrams et al., 2015 & Schneider et al., 2002). Advantages of online focus groups included less control of the facilitator, cost-effective of both time and money, the ability to reach a more diverse population, and a more egalitarian approach, as there was less chance for participants to dominate the conversation (Abram et al., 2015). Disadvantages of online focus groups included less control of the facilitator, the possibility of technical issues and loss of Internet connection, disorganized content and material, less elaborate discussions on important topics, and only included Internet users (Abrams et al., 2015 & Schneider et al., 2002). In their study of web-based kidney education, the Medical Education Institute found that just over 34% of hemodialysis patients had used the Internet. This study indicated that not all patients with chronic kidney disease have a computer or Internet access, or are comfortable navigating the Internet (Schatell, 2013). Schatell suggested that information could be printed or downloaded for patients who do not have access to online resources, although the author pointed out that this would only meet patients’ educational needs and not provide social interaction (2013). Consideration of Literacy Skills Literacy levels of people with chronic kidney disease must also be considered when developing educational material and presenting resources to them. When the Medical Education Institute designed their web-based kidney education program, they 11 targeted the material for a sixth-grade reading level to accommodate the education level of dialysis patients in the United States (Schatell, 2013). According to the U.S. Department of Education and the National Center for Education Statistics (NCES), 32 million adults nationwide cannot read, and of those that can read, 21% read below a fifth-grade level (2003). In that same report, an estimated 23% of San Joaquin County residents lack basic literacy skills (NCES, 2003). When this researcher developed the informed consent for the dialysis support group and consulted with the Standards and Compliance department at San Joaquin General Hospital, this researcher was informed to be aware of the literacy level of the San Joaquin County population and therefore created a simple, easy-to-read consent form. METHODOLOGY The researcher completed her second year internship at San Joaquin General Hospital and completed a rotation in the outpatient dialysis clinic. The researcher chose the dialysis clinic as her focus during the internship. Prior to the internship, management staff and the dialysis unit social workers had discussed the formation of a dialysis support group, however the time and commitment needed for its development was a challenge. In order to administer the support group, a proposal for a dialysis support group required review and approval by San Joaquin General Hospital’s Institutional Review Board (IRB). The researcher proposed the implementation of a dialysis support group as her graduating project to the dialysis unit social workers, supervising Licensed Clinical Social Worker (LCSW), Director of Utilization Management, and Assistant Department Manager at the dialysis clinic, and received their endorsement. The researcher completed the proposal and informed consent (See Appendix A) for the dialysis support group with guidance and consultation from the hospital’s Deputy Director of Standards and Compliance, Carla Bomben, and Dr. Brodie (CSU Stanislaus, Department of Social Work)- the researcher’s project chair. The researcher proposed the pilot dialysis support group to the hospital IRB committee on August 14, 2014, and the project was approved. The researcher contacted Patty McCormac- Division Program Director for the National Kidney Foundation (NKF), the Bay Area Association of Kidney Patients (BAAKP), and Yasuyo Tsunemine- 12 13 LCSW Renal Social Worker in Portland, Oregon who is “known as a social work champion for the Portland Kidney Group” (P. McCormac, personal communication, March 10, 2014), for guidance and suggestions in the formation of a dialysis support group. The researcher created a standard flyer (See Appendix B) to be used every month to advertise the support group to patients. The design of the flyer required approval of the dialysis unit Medical Director, the Assistant Department Manager, and the hospital IRB, which was received. The flyers will be posted around the clinic, and also given to patients by the social workers and the researcher. Participants that signed up for the support group also volunteered to recruit other patients by inviting them personally, and/or giving them a flyer. The researcher will also submit a monthly report on the progress of the project to the hospital IRB from October 2014- March 2015. This report includes if there were any changes to the project and also the number of participants in the project. The evaluation of this project will utilize a quantitative approach. The survey instrument has 17 questions, including three open-ended questions (See Appendix D). This survey is based on the five areas of the Kidney Disease Quality of Life (KDQOL) survey, however modified to be an appropriate measuring tool for the pilot dialysis support group. The first set of questions will assess components regarding physical health, including their perception of their ability to engage in exercise, physical activity, and social activities with kidney disease. Another question will ask the participant if the 14 support group improved their understanding in managing kidney disease. The second set of questions will assess components of their mental and emotional health. Questions include if participants are able to set time aside for self-care activities, how much of the time their emotional health interferes in their ability to engage in social activities or connect with others, and how comfortable they are asking for emotional support and sharing thoughts and feelings with family and friends, and also with other patients who also have kidney disease. The third set of questions will assess components of the burden of kidney disease and their knowledge about kidney disease and treatment options. Two questions will ask if they have received education for all the treatment options for kidney disease, and what treatment options they would like information on. The next question will ask how confident they are in their ability to learn more about kidney disease and its treatments. The fourth set of questions will assess components of their day-to-day symptoms caused by dialysis. These two questions will ask how comfortable they are reporting new symptoms or changes in their health to their care team, and how confident they are to follow the treatment plan recommended for them. The fifth set of questions will assess components about how much kidney disease impacts their life. These three questions will ask if they have found ways to make their diet easier with the challenge of diet and fluid limits, if having kidney disease encourages them to be a more informed patient and healthcare consumer, and if the support group increased their confidence in their ability to cope with kidney 15 disease. The last three questions on the survey will be open-ended and offer an opportunity for participants to make suggestions for future guest speakers, future topics, and to indicate how attending the support group has helped them. Ribner and Knei-Paz (2002) recognized the influence of each client’s perspective on the social worker’s treatment interventions in order to evaluate its’ success or failure. In order to promote a collaborative relationship between the MSW student and support group participants, encouraging and incorporating their feedback will be an ongoing process. The instrument will be used as an initial survey, and then a post survey (See Appendix E) will be administered at the close of the pilot dialysis support group to compare results. The survey will also be used to provide feedback for conclusions and recommendations. The researcher will also incorporate informal feedback from the participants over the course of the six-month pilot support group. The responses to the survey will be used to evaluate the overall effectiveness of the support group and determine if the support group should continue at the dialysis clinic. CONCLUSION AND RECOMMENDATIONS The six-month pilot dialysis support group at San Joaquin General Hospital took place from October 2014 to March 2015. Support group meetings were held monthly and involved a total of six participants. Three were female and three were male. Three of the participants were Asian and three were Latino or Hispanic. Their ages ranged from 28-64 years old. Four participants consistently attended support group meetings, while two participants attended one support group meeting each. Four other patients signed the informed consent to participate, although did not take part in the pilot support group. When the researcher provided dates of the support group meetings to these patients or followed up with them when they missed a meeting, they reported the following reasons for not attending: loss of interest, hospital admissions, medical appointments, feeling ill, family responsibilities, and temporary relocation. The patients who expressed the most interest and committed to attend the support group were in the Monday, Wednesday, Friday, second and third shift dialysis schedule. The second shift dialysis schedule ranges in the hours of 9:00am12:30pm, and the third shift ranges in the hours of 1:30pm- 5:00pm. Therefore, the meeting date and time was scheduled for every third Wednesday of the month at 1:00p.m. One month the meeting was held on the second Wednesday to accommodate the schedule of a community provider, and the group adjusted their schedules to attend. The patients that participated in the support group attended the meetings 16 17 before or after their dialysis treatments on Wednesdays. Participants reported that although dialysis can make them especially weak or exhausted on certain days, depending on how many liters of fluid was removed during treatment, it was more convenient for them to attend support groups on the days they are at the clinic. They also reported it was less of a challenge to modify transportation arrangements on treatment days to attend the support group, as some of the participants use outside transportation services. A few patients in the Tuesday, Thursday, Saturday dialysis schedule expressed interest in the support group, and the researcher was willing to facilitate another monthly meeting to accommodate this group. Ultimately this group of patients did not sign up, so the researcher did not proceed with facilitating another support group on those days. For the first two months the researcher scheduled a morning support group meeting on Wednesdays. This was to accommodate patients who signed up on the Monday, Wednesday, Friday first shift dialysis schedule that ranges in the hours of 5:30am-9:00am. However there were no attendees at those meetings, so the researcher discontinued the morning support group meeting. To evaluate the dialysis support group each participant was given an initial survey after the first meeting they attended, and then a post survey when the support group concluded. Four participants completed both initial and post surveys, while two participants completed only the initial survey due to their participation in only one meeting. The five areas measured were physical health, mental and emotional health, burden of kidney disease and knowledge of kidney disease and treatment options, 18 day-to-day symptoms caused by dialysis, and how much kidney disease impacts their life. Objective # 1 The results of objective # 1, to develop a curriculum that provides opportunities for patients to become more knowledgeable and informed about their health care decisions and treatment options- yielded the following: In the assessment of physical health (question #3), all participants agreed or strongly agreed in both the initial and post surveys that this support group improved their understanding in managing their kidney disease. One participant responded, “I got info on therapy for me” (Anonymous, 2015). In the assessment of burden of kidney disease and knowledge of kidney disease and treatment options (questions #8 and #8a.), three participants in the initial surveys agreed and three disagreed they had received education on the treatment options for kidney disease. Those who disagreed requested information on peritoneal dialysis, home hemodialysis, and transplant. One participant responded, “I know a little, but not exactly what each one is” (Anonymous, 2014). On the post surveys all four participants, including the three participants who disagreed in the initial surveys, now agreed they had received education on treatment options. Two participants were unable to complete the post survey. All participants agreed or strongly agreed in both the initial and post surveys (question #9), confidence in their ability to learn more about kidney disease and its treatment options. 19 Objective # 2 The results of objective #2, to offer a safe outlet for patients to discuss the challenges of kidney disease- yielded the following: In the assessment of mental and emotional health, all participants agreed or strongly agreed on the initial and post surveys they are comfortable asking for emotional support and sharing thoughts and feelings with family and friends (question #6). They also agreed or strongly agreed they are comfortable asking for emotional support and sharing thoughts and feelings with other patients who also have kidney disease (question #7). In the assessment of day-to-day symptoms caused by dialysis (question #10), all participants agreed or strongly agreed on the initial and post surveys they are comfortable reporting new symptoms or changes in their health to their care team. Participants also responded to how this support group has helped them, “As an outlet for sharing experiences with other people” (Anonymous, 2014) and “more intimate experiences of fellow patients” (Anonymous, 2015). Objective # 3 The results of objective #3, to create a forum where patients can share thoughts and ideas about how to make kidney disease less of a burden in their livesyielded the following: In the assessment of day-to-day symptoms caused by dialysis, five participants in the initial and post surveys agreed or strongly agreed they are 20 confident in their ability to follow the treatment plan their doctor and care team has recommended for them (question #11), while one participant was not sure if they are confident in their ability to follow the treatment plan the care team has recommended for them. In the post survey, the participant who was not sure, now strongly agreed they are confident in their ability to follow their treatment plan. In the assessment of how much kidney disease impacts their life, all participants agreed or strongly agreed on the initial and post surveys that although diet and fluid limits are a challenge with kidney disease, they have found creative ways to make their diet easier and less of a burden (question #12). All participants agreed or strongly agreed on the initial and post surveys that having kidney disease encourages them to be a more informed patient and healthcare consumer (question #13). Five participants agreed or strongly agreed on the initial and post surveys that this support group increased their confidence in their ability to cope with kidney disease (question #14), while one participant was not sure. In the post survey the participant that was not sure, now strongly agreed this support group increased their confidence in their ability to cope with kidney disease. Objective # 4 The results of objective #4, to improve patient perceptions of their physical and mental health related to kidney disease- yielded the following: 21 In the assessment of physical health (question #1), three participants in the initial surveys agreed or strongly agreed that kidney disease interferes in their ability to exercise or engage in physical activity, while three participants disagreed that kidney disease interferes in their ability to exercise or engage in physical activity. In the post surveys, three participants agreed or strongly agreed kidney disease interferes in their ability to exercise or engage in physical activity, one disagreed, and two participants were unable to complete a post survey. All participants in the initial surveys reported that either most of the time or some of the time in the past four weeks, their physical health interfered with their participation in social activities (question #2). In the post surveys, one participant reported their physical health very rarely interferes in their participation in social activities, while three participants reported their physical health interferes most or some of the time in their social activities. Two participants were unable to complete the post surveys. In the final question for assessment of physical health (question #3), all participants agreed or strongly agreed in both the initial and post surveys that this support group improved their understanding in managing their kidney disease. In the assessment of mental and emotional health, five participants in the initial surveys agreed or strongly agreed that although kidney disease presents challenges in their lives, they are able to set time aside for self-care activities (question #4), while one participant disagreed. In the post survey, three patients agreed or strongly agreed that although kidney disease presents 22 challenges in their lives, they are able to set time aside for self-care activities, one participant disagreed, and two participants were unable to complete the post surveys. In the initial surveys when asked during the past four weeks, how much of the time their emotional health interfered in their ability to engage in social activities or connect with others (question #5), one participant responded some of the time, two participants responded very rarely, and two participants responded never. In the post surveys one participant responded some of the time, three responded very rarely, and two participants were unable to complete the post surveys. Recommendations Throughout the course of the six months, participants offered positive feedback on educational topics and enjoyed topic discussions on treatment options. In the curriculum, Treatment Options for Kidney Disease, education was provided on the various treatment options, while UC Davis and the transplant recipient also offered information on transplantation. It is advised only one treatment option be discussed per meeting, as information on treatments is detailed and requires more time for a thorough discussion on the pros and cons of each treatment. The researcher suggests inviting a nurse or physician to those meetings to answer questions that require the expertise of a medical professional. Future support group meetings should incorporate continual discussion on transplantation, as all support group participants are on the list for transplant and are regularly attending medical appointments to increase their possibility of transplant candidacy. Participants also suggested former 23 dialysis patients and transplant recipients from their clinic be asked to come back as guest speakers in support group meetings and talk about their experiences. In the area of physical health, results indicated that kidney disease does interfere in the patients’ ability to engage in exercise or physical activity. It is proposed the support group include discussions on topics of physical health on a regular basis, especially since this is a chronic condition. Educating participants on these topics will provide them with both information and opportunities to identify ways they can better manage their physical health in relation to their kidney disease. In the curriculum, Gentiva Home Healthcare provided education on exercise and fall prevention, and even offered to return to the support group for future discussions on other physical health topics. Continuing partnerships with community providers and utilizing their knowledge and expertise in areas of physical health is a great asset to the support group. Participants also requested discussions on the topics of lifestyle changes, medication effects and management, and working while disabled. These are also areas that can utilize community resources and partner healthcare organizations. Follow up on self-care topics and future topic discussions on mental and emotional health are also advised. The curriculum topic, Staying Active with Kidney Disease, should be repeated and especially focus on self-care activities. This would include a discussion on the importance of self-care, what patients are already doing for self-care, and how to incorporate new self-care activities in their plan of care. Reviewing the self-care handout will also be helpful. The facilitator may also want to 24 introduce mindfulness and meditation, as researchers are now studying and suggesting meditation as a coping mechanism for stress management with chronic illness (Bauer-Wu, 2010). Participants also requested future discussions on topics of feelings of loneliness, family relationships, sexual health, and socialization. Impact of the Dialysis Support Group The dialysis support group at San Joaquin General Hospital served to engage a small group of people in an open and engaging discussion of the commonality they all share- chronic kidney disease. While part of the support group functions to educate participants about topics related to kidney disease, the support group also functions to allow participants opportunities to ask questions about what they are most interested in and to learn from the experiences and knowledge of others. The dialysis support group serves to empower patients to participate in the education process and become more efficient in managing their kidney disease. The researcher suggests that support group participants have come to a better understanding that managing their kidney disease involves effort and accountability, which although takes tremendous work on their part, is an empowering concept. The Role of the Facilitator The dialysis support group experience is, in large part, a reflection of the energy and enthusiasm the facilitator brings to the meetings. The facilitator has an important role in guiding group discussions and engaging the participants in a process of exploration and learning, while also keeping topics fun and positive. Some topics will be easier and some more challenging, although it is possible to keep a positive 25 outlook. The facilitator must be responsible for keeping the group focused and on topic, shifting the group discussion if others dominate the discussion, encouraging participation of all members (although not forcing participation), and ensuring the group is doing most of the talking, not the facilitator. The facilitator must also create a safe, non-judgmental environment, leading by example of their words and actions. This will encourage support group participants to also provide a safe, non-threatening environment, and one that is welcoming to others. The most important thing the facilitator needs to remember is that you are there to empower the participants to find their own answers and motivators to improve their quality of life in managing their kidney disease. One participant responded to how this support group has helped them, “Helped me to understand that we still have hope to have a normal life, to be patient waiting for a [transplant] donor, and to stay healthy and happy (Anonymous, 2015). Limitations Although feedback from support group participants was mostly positive, the researcher acknowledges other factors may have contributed to results and improvement in some areas of the survey. One limitation of the evaluation of the support group is that results cannot be generalized, as there were only six participants in a dialysis clinic of over 100 patients. Although only a small group, the researcher suggests the support group had a positive impact on those that participated and recommends it continue monthly. The researcher also recommends promotion of the support group be a collaborative effort among members of the interdisciplinary team, 26 including social workers, nurses, physicians, dieticians, as well as other support staff. This will likely make the support group more marketable, encourage others to attend, and keep the energy and momentum of the pilot support group. Even when feeling physically or emotionally drained, participants of the pilot support group made a significant effort to attend, as they found the group educational and meaningful. The pilot support group was a two-way commitment and will require this commitment from both the facilitator and patients to have future success. Implications for Social Work Practice Kidney disease, as with other chronic conditions, significantly influences patients’ physical capabilities, psychological well-being, and requires adjustment to lifestyle changes. Patients must cope with chronic illness across the life span and develop positive health behaviors to increase their quality of life. Medical social workers must be aware of indicators that affect quality of life, and provide interventions that address psychosocial needs and offer education on disease management. As indicated in the review of related literature, social support and connecting with others is associated with better health outcomes (Cukor et al., 2007). Offering supportive counseling through peer support groups can assist patients cope with emotions that accompany illness and treatment, and offer validation in a unique way that healthcare providers can not give. Medical social workers can also provide opportunities for patients to become more informed healthcare consumers and advocates of kidney health. In the support group meetings before we began topic discussions, time was allowed for 27 announcements from both the participants and facilitator. The researcher utilized this time to inform participants of current research on kidney disease and advocacy opportunities to protect healthcare for dialysis patients. Patients expressed interest in this material and appreciated being given information on policy that would raise awareness of kidney disease. As social workers we are always advocating for our clients, but when we empower them to advocate for themselves, that is social justice. REFERENCES 29 REFERENCES Abrams, K. M., Wang, Z., Song, Y. J., & Galindo-Gonzales, S. (2015). Data richness trade-offs between face-to-face, online audiovisual, and online text-only focus groups. Social Science Computer Review, 33(1), 80-96. doi: 10.1177/0894439313519733 Bauer-Wu, S. (2010). Mindfulness meditation. Oncology, 24(10) 36-40. Cukor, D., Cohen, S. D., Peterson, R. A., & Kimmel, P. L. (2007). Psychosocial aspects of chronic disease: ESRD as a paradigmatic illness. Journal of the American Society of Nephrology, 18(12), 3042-3055. DaVita. 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Retrieved March 25, 2015 from https://nces.ed.gov/naal/estimates/StateEstimates.aspx Wagner, E. H., Austin, B. T., Davis, C., Hindmarsh, M., Schaefer, J., & Bonomi, A. (2001). Improving chronic illness care: Translating evidence into action. Health Affairs, 20(6), 64-78. APPENDICES 33 APPENDIX A INFORMED CONSENT 34 35 36 37 APPENDIX B DIALYSIS SUPPORT GROUP SAMPLE FLYER 38 APPENDIX C DIALYSIS SUPPORT GROUP CURRICULUM 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 APPENDIX D DIALYSIS SUPPORT GROUP INITIAL SURVEY 55 56 57 58 APPENDIX E DIALYSIS SUPPORT GROUP POST SURVEY 59 60 61
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