Family Members' Experiences With Dialysis and Kidney Transplantation

被引:17
作者
DePasquale, Nicole [1 ]
Cabacungan, Ashley [1 ]
Ephraim, Patti L. [2 ]
Lewis-Boyer, Lapricia [3 ]
Powe, Neil R. [4 ]
Boulware, L. Ebony [1 ]
机构
[1] Duke Univ, Dept Med, Div Gen Internal Med, Sch Med, 200 Morris St,3rd Fl, Durham, NC 27701 USA
[2] Johns Hopkins Bloomberg Sch Publ Hlth, Welch Ctr Prevent Epidemiol & Clin Res, Dept Epidemiol, Baltimore, MD USA
[3] Johns Hopkins Bloomberg Sch Publ Hlth, Welch Ctr Prevent Epidemiol & Clin Res, Gen Internal Med & Phys Med & Rehabil, Baltimore, MD USA
[4] Univ Calif San Francisco, Sch Med, San Francisco, CA USA
关键词
dialysis; End-stage kidney disease treatments; families; living-donor kidney transplantation; unexpected experiences;
D O I
10.1016/j.xkme.2019.06.001
中图分类号
R5 [内科学]; R69 [泌尿科学(泌尿生殖系疾病)];
学科分类号
1002 ; 100201 ;
摘要
Rationale & Objective: Understanding whether family members' experiences with patients' treatment for end-stage kidney disease (ESKD) were expected could guide the development of family-centered interventions that enhance the preparedness of patients and their care partners for kidney replacement therapies. We explored unexpected negative experiences with ESKD treatments among family members of dialysis and posttransplantation patients to identify meaningful directions for family-centered research and clinical care. Study Design: Qualitative study. Setting & Participants: 8 focus groups comprising 49 family members of dialysis patients and living donor kidney transplant recipients undergoing medical care in Baltimore, MD. Analytical Approach: Focus groups were stratified by patients' treatment (in-center hemodialysis, home hemodialysis, peritoneal dialysis, or living donor kidney transplantation) and family members' self-reported race (African American vs non-African American), resulting in 2 groups per treatment experience. Inductive thematic analysis was used to identify themes in focus group transcripts. Themes shared across different treatment groups were highlighted to provide insight into common experiences. Results: We identified 4 themes that described family members' unexpected negative treatment experiences: becoming a care partner (unanticipated responsibilities and sleep disruptions), adverse psychological treatment responses in patients (eg, depression) and family members (eg, anxiety), treatment delivery and logistics (insufficient information, medication regimen, and logistical inconveniences), and patient morbidity (dialysis-related health problems and fatigue). All themes were relevant to discussions in the in-center hemodialysis, peritoneal dialysis, and transplantation groups, whereas psychological responses and morbidity themes did not reflect discussions in home hemodialysis groups. Limitations: Data collection occurred from 2008 to 2009; family members were recruited through patients undergoing care in 1 geographic area; 1 family member participant per patient. Conclusions: Family members described a broad range of unexpected negative experiences with ESKD treatments. Efforts to prepare families for ESKD treatments through more family-centered care, early and tailored education, and interventions targeting care partner preparedness, health provider-family member communication, and relationship dynamics in family member-patient dyads are needed.
引用
收藏
页码:171 / 179
页数:9
相关论文
共 45 条
[1]  
Braun V., 2006, QUAL RES PSYCHOL, V3, P77, DOI [DOI 10.1191/1478088706QP063OA, 10.1191/1478088706qp063oa]
[2]   Effectiveness of coping strategies intervention on caregiver burden among caregivers of elderly patients with dementia [J].
Chen, Hui-Mei ;
Huang, Mei-Feng ;
Yeh, Yi-Chun ;
Huang, Wen-Hui ;
Chen, Cheng-Sheng .
PSYCHOGERIATRICS, 2015, 15 (01) :20-25
[3]   The Roles of Social Support and Health Literacy in Self-Management Among Patients With Chronic Kidney Disease [J].
Chen, Yu-Chi ;
Chang, Li-Chun ;
Liu, Chieh-Yu ;
Ho, Ya-Fang ;
Weng, Shuo-Chun ;
Tsai, Tzu-I .
JOURNAL OF NURSING SCHOLARSHIP, 2018, 50 (03) :265-275
[4]   Selecting renal replacement therapies: what do African American and non-African American patients and their families think others should know? A mixed methods study [J].
DePasquale, Nicole ;
Ephraim, Patti L. ;
Ameling, Jessica ;
Lewis-Boyer, Lapricia ;
Crews, Deidra C. ;
Greer, Raquel C. ;
Rabb, Hamid ;
Powe, Neil R. ;
Jaar, Bernard G. ;
Gimenez, Luis ;
Auguste, Priscilla ;
Jenckes, Mollie ;
Boulware, L. Ebony .
BMC NEPHROLOGY, 2013, 14
[5]   Suspended Life Pattern: A Qualitative Study on Personal Life Among Family Caregivers of Hemodialysis Patients in Iran [J].
Ebadi, Abbas ;
Sajadi, Seyedeh A. ;
Moradian, Seyed T. ;
Akbari, Roghayeh .
INTERNATIONAL QUARTERLY OF COMMUNITY HEALTH EDUCATION, 2018, 38 (04) :225-232
[6]  
Ek A., 2014, Health Care: Current Reviews, V02, DOI [10.4172/hccr.1000118, DOI 10.4172/HCCR.1000118, DOI 10.4172/2375-4273.1000118]
[7]   The providing resources to enhance African American patients' readiness to make decisions about kidney disease (PREPARED) study: protocol of a randomized controlled trial [J].
Ephraim, Patti L. ;
Powe, Neil R. ;
Rabb, Hamid ;
Ameling, Jessica ;
Auguste, Priscilla ;
Lewis-Boyer, LaPricia ;
Greer, Raquel C. ;
Crews, Deidra C. ;
Purnell, Tanjala S. ;
Jaar, Bernard G. ;
DePasquale, Nicole ;
Boulware, L. Ebony .
BMC NEPHROLOGY, 2012, 13
[8]   Six key topics informal carers of patients with breathlessness in advanced disease want to learn about and why: MRC phase I study to inform an educational intervention [J].
Farquhar, Morag ;
Penfold, Clarissa ;
Benson, John ;
Lovick, Roberta ;
Mahadeva, Ravi ;
Howson, Sophie ;
Burkin, Julie ;
Booth, Sara ;
Gilligan, David ;
Todd, Christopher ;
Ewing, Gail .
PLOS ONE, 2017, 12 (05)
[9]   Psychosocial Factors and 30-Day Hospital Readmission among Individuals Receiving Maintenance Dialysis: A Prospective Study [J].
Flythe, Jennifer E. ;
Hilbert, Johnathan ;
Kshirsagar, Abhijit V. ;
Gilet, Constance A. .
AMERICAN JOURNAL OF NEPHROLOGY, 2017, 45 (05) :400-408
[10]   A Systematic Review of Psychosocial Interventions to Cancer Caregivers [J].
Fu, Fang ;
Zhao, Huaijuan ;
Tong, Feng ;
Chi, Iris .
FRONTIERS IN PSYCHOLOGY, 2017, 8