- Email: [email protected]
Utilization of Patient Decision Support Tools and Processes: The Shared End-Stage Renal Patients Decision Making (SHERPA-DM) Project
1. EMOTIONAL BONDING IN RECIPIENTS OF DECEASED DONOR KIDNEY TRANSPLANTS (DDRT): ASSOCIATED FACTORS: Annette Cerrato, Moro Salifu, Mariana Markell, SUNY Downstate Medical Center, Brooklyn, NY, USA The feelings of kidney transplant recipients toward their unknown deceased donor are complex and may affect post-transplant behavior. We studied 152 DDRT recipients’ perceptions of an emotional relationship toward their donor using an anonymous 21-item survey that addressed feelings about their donor using a 4-point Likert scale, including questions about self-care. Bonding was defined as cumulative agreement with the statements: ‘I often think about my kidney donor’, ‘I feel that my deceased donor knows me’, ‘I feel that my deceased donor lives on through me’, ‘I feel I have developed a relationship with my deceased donor that no one else can understand’, and ‘I take my medication based on this relationship’. Bonding was measured by the sum of answers to the above questions. Pearson’s r was calculated to assess the relationship between bonding and self-care and measured by correlations between bonding and agreement with the statement ‘The feelings I have about my donor influence the way I take care of myself’. The majority of respondents (78%, n=119) met the criteria for a positive emotional bond with their donor. There was also a significant relationship between bonding and self-care (r=0.3, p<0.05), suggesting that recipients’ self-care was influenced by feelings toward their donor. Those who identified a bond were also more likely to agree with the statements ‘I sometimes think I have inherited some of my deceased donor’s characteristics’, ‘I feel that I owe something to my deceased donor’, and ‘I feel happy when I think about my deceased donor’, all at p<0.05. The majority of recipients in our inner-city sample perceived a bond toward their donor that significantly influenced their self-care. Results support the need for further exploration of the complex relationship between appreciation, guilt and projection that affects the donorrecipient bond and self-care behaviors.
2.
3. EMBRACING THEIR TRANSFORMED LIFE: HUSBANDS LIVING WITH WOMEN ON DIALYSIS Maryse Pelletier-Hibbert, University of New Brunswick, Faculty of Nursing, Fredericton New Brunswick, Canada The purpose of this qualitative study was to explore the adjustment process of husbands living with women on dialysis. Using grounded theory methodology, data were collected from 18 men by semi-structured face-to-face or telephone tape-recorded interviews. Findings revealed the most central issue was dealing with multiple changes in daily routines and future plans. Changes created many hardships, but witnessing their wives’ suffering was more distressing. They engaged in the basic social process of embracing their transformed life using 4 stages of embracing a transformed life: becoming aware, involving themselves, centering life on their wives, and striving to achieve balance. The theory of embracing a transformed life provides a framework for understanding and explaining the complex interplay of strategies undertaken by these husbands to respond, adjust, and integrate changes.it also contributes towards closing an existing gap in knowledge and the findings underscore the husbands’ abilities to learn and carry out complex roles, responsibilities, and routines that require sophisticated observation, decision making, and technical and problemsolving skills. The discrete stages of the theory guide health care professionals to better understand the various changes dialysis-caregivers may experience during different phases of the patients’ illness trajectory and to implement supportive care to enhance their adjustment and sustain their efforts.
UTILIZATION OF PATIENT DECISION SUPPORT TOOLS AND PROCESSES: THE SHARED END-STAGE RENAL PATIENTS DECISION MAKING (SHERPA-DM) PROJECT: Janet Davis, MaryAnn Murray, Janice Bissonnette, Janet Graham, Heather Martelacci, Debbie Lynn, Progressive Renal Insufficiency team, The Ottawa Hospital, Ottawa, Ontario, Canada To present a shared decision support intervention for adult patients with late-stage CKD facing decisions about renal replacement therapy. Using a participative action approach two tools were developed: 1. An end-stage renal disease Treatment Options Grid describing all treatment options available to patients in a detailed and directly comparative format, and providing answers to frequently asked questions; and 2. the SHERPA-DM©(Shared End-Stage Renal Patients Decision Making) Patient Decision Aid used to guide patients through the decision-making process. These tools were piloted within a multidisciplinary late-stage CKD clinic for adults with eGFR < 30 ml/min. Providers attended interactive workshops to build decision-coaching skills. Tools used in these workshops included video and role playing. Evaluation by patients (n=17) and providers (n=21) included acceptability, usability, and feasibility of integrating into existing care models. Over 95% of participants recommended the options grid and 100% recommended the patient decision aid for use by other patients or health care providers. Patients and providers felt more prepared to identify a treatment option t (36) = -0.60, p= 0.55 after using the options grid and 100% of participants agreed that the explanations of the options were clear and relevant. Patients (100%) reported that the decision aid was relevant and helpful in preparing them make a decision and plans for next steps. Most providers (89.5%) found the tool helped patients to better participate in decision-making. A practical decision support tool complemented by an interactive educational program for providers has improved the decision experience for adult patients in a late-stage CKD clinic. It has been acceptable to patients and providers, helpful in engaging patients in a difficult decision making process, and led to increased ability to make a decision about RRT. Broad implementation of the intervention will improve end stage renal care planning.
Adv Chronic Kidney Dis. 2017;24(2):131
131
2.
3. EMBRACING THEIR TRANSFORMED LIFE: HUSBANDS LIVING WITH WOMEN ON DIALYSIS Maryse Pelletier-Hibbert, University of New Brunswick, Faculty of Nursing, Fredericton New Brunswick, Canada The purpose of this qualitative study was to explore the adjustment process of husbands living with women on dialysis. Using grounded theory methodology, data were collected from 18 men by semi-structured face-to-face or telephone tape-recorded interviews. Findings revealed the most central issue was dealing with multiple changes in daily routines and future plans. Changes created many hardships, but witnessing their wives’ suffering was more distressing. They engaged in the basic social process of embracing their transformed life using 4 stages of embracing a transformed life: becoming aware, involving themselves, centering life on their wives, and striving to achieve balance. The theory of embracing a transformed life provides a framework for understanding and explaining the complex interplay of strategies undertaken by these husbands to respond, adjust, and integrate changes.it also contributes towards closing an existing gap in knowledge and the findings underscore the husbands’ abilities to learn and carry out complex roles, responsibilities, and routines that require sophisticated observation, decision making, and technical and problemsolving skills. The discrete stages of the theory guide health care professionals to better understand the various changes dialysis-caregivers may experience during different phases of the patients’ illness trajectory and to implement supportive care to enhance their adjustment and sustain their efforts.
UTILIZATION OF PATIENT DECISION SUPPORT TOOLS AND PROCESSES: THE SHARED END-STAGE RENAL PATIENTS DECISION MAKING (SHERPA-DM) PROJECT: Janet Davis, MaryAnn Murray, Janice Bissonnette, Janet Graham, Heather Martelacci, Debbie Lynn, Progressive Renal Insufficiency team, The Ottawa Hospital, Ottawa, Ontario, Canada To present a shared decision support intervention for adult patients with late-stage CKD facing decisions about renal replacement therapy. Using a participative action approach two tools were developed: 1. An end-stage renal disease Treatment Options Grid describing all treatment options available to patients in a detailed and directly comparative format, and providing answers to frequently asked questions; and 2. the SHERPA-DM©(Shared End-Stage Renal Patients Decision Making) Patient Decision Aid used to guide patients through the decision-making process. These tools were piloted within a multidisciplinary late-stage CKD clinic for adults with eGFR < 30 ml/min. Providers attended interactive workshops to build decision-coaching skills. Tools used in these workshops included video and role playing. Evaluation by patients (n=17) and providers (n=21) included acceptability, usability, and feasibility of integrating into existing care models. Over 95% of participants recommended the options grid and 100% recommended the patient decision aid for use by other patients or health care providers. Patients and providers felt more prepared to identify a treatment option t (36) = -0.60, p= 0.55 after using the options grid and 100% of participants agreed that the explanations of the options were clear and relevant. Patients (100%) reported that the decision aid was relevant and helpful in preparing them make a decision and plans for next steps. Most providers (89.5%) found the tool helped patients to better participate in decision-making. A practical decision support tool complemented by an interactive educational program for providers has improved the decision experience for adult patients in a late-stage CKD clinic. It has been acceptable to patients and providers, helpful in engaging patients in a difficult decision making process, and led to increased ability to make a decision about RRT. Broad implementation of the intervention will improve end stage renal care planning.
Adv Chronic Kidney Dis. 2017;24(2):131
131