Self-management action and motivation of Pacific adults in New Zealand with end-stage renal disease
Autoři:
Jacqueline Schmidt-Busby aff001; Janine Wiles aff002; Daniel Exeter aff003; Timothy Kenealy aff004
Působiště autorů:
Counties Manukau Health, Middlemore Hospital, Auckland, New Zealand
aff001; Department of Social and Community Health, School of Population Health, Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand
aff002; Department of Epidemiology and Biostatistics, School of Population Health, Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand
aff003; School of Medicine, Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand
aff004
Vyšlo v časopise:
PLoS ONE 14(9)
Kategorie:
Research Article
doi:
https://doi.org/10.1371/journal.pone.0222642
Souhrn
Aims
To explore actions and motivations for self-management practices of Pacific adults following diagnosis of end stage renal disease (ESRD).
Methods
Focused ethnography using in-depth interviews with 16 Pacific people on haemodialysis for diabetic ESRD, in Auckland, New Zealand. Study participants were of Samoan, Cook Islander, Tongan, Niuean, or Tokelauan ethnicity and aged between 30 to 69 years old. Thematic analysis was used to code and identify emergent themes.
Results
All participants assumed active responsibility for their self-management following their diagnosis of ESRD. They reported positive differences in their current self-management behaviours, compared to pre-ESRD diagnosis. In the face of their terminal diagnosis, participant’s motivations to self-manage their health were fuelled by hope; the hope to live long enough to change their family legacy of diabetes and ESRD. To achieve this, there was a dependency upon family members as a resource for self-management support. Yet at the same time, family members also had health concerns (including diabetes), and several participants themselves were carers for sick or elderly family members.
Conclusion
The growing number of members (within family units) progressing from moderate to late-stage diabetes raises concerns about the sustainability of future family support in Pacific families in New Zealand with histories of diabetes, ESRD, and other chronic diseases. While the burden upon informal carers (family) has been well documented throughout the past few decades, the dynamics of bi-directional carer support between (two or more) sick family members and their families have had less exposure. This has potentially significant implications for Pacific peoples in New Zealand, considering the increases in diabetes prevalence within their families.
Klíčová slova:
Behavior – Cardiovascular diseases – Emotions – Human families – Chronic kidney disease – Medical dialysis – New Zealand
Zdroje
1. Lorig KR, Holman HR. Self-management education: history, definition, outcomes, and mechanisms. Annals of behavioral medicine. 2003;26(1):1–7. doi: 10.1207/S15324796ABM2601_01 12867348
2. Von Korff M, Gruman J, Schaefer J, Curry SJ, Wagner EH. Collaborative management of chronic illness. Annals of Internal Medicine. 1997;127(12):1097–102. doi: 10.7326/0003-4819-127-12-199712150-00008 9412313
3. Pearson ML, Mattke S, Shaw R, Ridgely MS, Wiseman JDSH. Patient self-management support programs: an evaluation. Agency for Healthcare Research and Quality; 2007. Contract No.: Report.
4. Schmidt-Busby J, Wiles J, Exeter D, Kenealy T. Understanding ‘context’ in the self-management of type 2 diabetes with comorbidities: A systematic review and realist evaluation. Diabetes research and clinical practice. 2018.
5. Scollan‐Koliopoulos M, O'Connell KA, Walker EA. Legacy of diabetes and self‐care behavior. Research in nursing & health. 2007;30(5):508–17. doi: 10.1002/nur.20208 17893932
6. Health Quality and Safety Commission New Zealand. Atlas of healthcare variation: Diabetes. Wellington: Health Quality and Safety Commission New Zealand; 2018.
7. Australia and New Zealand Dialysis and Transplant Registry. 41st Report, Chapter 9: End stage kidney disease in Aotearoa New Zealand. Australia and New Zealand Dialysis and Transplant Registry; 2018.
8. Simmons D, Gatland B, Leakehe L, Fleming C. Frequency of diabetes in family members of probands with non‐insulin‐dependent diabetes mellitus. Journal of internal medicine. 1995;237(3):315–21. doi: 10.1111/j.1365-2796.1995.tb01181.x 7891053
9. OECD. How does health spending in New Zealand compare? OECD health statistics 2015 Paris: OECD; 2015 [cited 2019 July 12]. Available from: www.oecd.org/health
10. Health Navigator New Zealand. Programme—courses Diabetes self-management; 2019 [cited 2019 May 10]. Available from: https://www.healthnavigator.org.nz/healthy-living/self-care/programmes-courses/diabetes-self-management/#Overview
11. Ministry of Health. Diabetes quality care standards toolkit 2014. Wellington: Ministry of Health; 2014.
12. Southwick M, Kenealy T, Ryan D. Primary care for pacific people: a Pacific and health systems approach. 2012.
13. Jackson G, Minster J. Metro-Auckland Pacific Population Health Profile. Ministry of Health; 2012. doi: 10.1177/1363459311403950
14. Deakin TA, McShane CE, Cade JE, Williams R. Group based training for self‐management strategies in people with type 2 diabetes mellitus. Cochrane database of systematic reviews. 2005(2).
15. Gamble E, Parry-Strong A, Coppell KJ, McBain L, Bingham LJ, Dutton L, et al. Development of a structured diabetes self-management education program specific to the cultural and ethnic population of New Zealand. Nutrition & Dietetics. 2015.
16. Schmidt-Busby J, Wiles J, Exeter D, Kenealy T. Understandings of disease among Pacific peoples with diabetes and end-stage renal disease in New Zealand. Health Expectations. 2019(In press).
17. Davies MJ, DA D’Alessio, J Fradkin, WN Kernan, C Mathieu, G Mingrone, et al. Management of hyperglycaemia in type 2 diabetes, 2018. A consensus report by the American Diabetes Association (ADA) and the European Association for the Study of Diabetes (EASD). Diabetologia. 2018;61(12):2461–98. doi: 10.1007/s00125-018-4729-5 30288571
18. Social Policy Evaluation and Research Unit. Families and Whānau Status Report 2016. Wellington: Social Policy Evaluation and Research Unit; 2016.
19. Macpherson C, Anae M, Spoonley P. Evolving identities of Pacific peoples in Aotearoa/New Zealand. Dunmore Press; 2001.
20. Pene G, Peita M, Howden-Chapman P. Living the Tokelauan way in New Zealand. The Social Policy Journal of New Zealand. 2009;35:79–92.
21. Tamasese TK, Parsons TL, Sullivan G, Waldegrave C. A qualitative study into pacific perspectives on cultural obligations and volunteering. Wellington: Pacific Section and the Family Centre Social Policy Research Unit; 2010.
22. Kiata L, Kerse N. Intercultural residential care in New Zealand. Qualitative Health Research. 2004;14(3):313–27. doi: 10.1177/1049732303261820 15011900
23. Schulman‐Green D, Jaser S, Martin F, Alonzo A, Grey M, McCorkle R, et al. Processes of self‐management in chronic illness. Journal of Nursing Scholarship. 2012;44(2):136–44. doi: 10.1111/j.1547-5069.2012.01444.x 22551013
24. Ryan P, Sawin KJ. The individual and family self-management theory: Background and perspectives on context, process, and outcomes. Nursing outlook. 2009;57(4):217–25. e6. doi: 10.1016/j.outlook.2008.10.004 19631064
25. Newton P, Asimakopoulou K, Scambler S. A qualitative exploration of motivation to self-manage and styles of self-management amongst people living with type 2 diabetes. Journal of diabetes research. 2015;2015.
26. Scollan-Koliopoulos M, Walker EA, Bleich D. Perceived risk of amputation, emotions, and foot self-care among adults with type 2 diabetes. The Diabetes Educator. 2010;36(3):473–82. doi: 10.1177/0145721710362108 20181805
27. Riegel B, Carlson B. Facilitators and barriers to heart failure self-care. Patient education and counseling. 2002;46(4):287–95. 11932128
28. Bruhn JG. Therapeutic value of hope. Southern Medical Journal. 1984;77(2):215–9. doi: 10.1097/00007611-198402000-00020 6701591
29. Herth K. Hope in older adults in community and institutional settings. Issues in mental health nursing. 1993;14(2):139–56. 8509276
30. Schulman‐Green D, Jaser SS, Park C, Whittemore R. A metasynthesis of factors affecting self‐management of chronic illness. Journal of advanced nursing. 2016;72(7):1469–89. doi: 10.1111/jan.12902 26781649
31. Ministry of Health and Ministry of Pacific Island Affairs. Tupu ola moui: Pacific health chart book 2004. Wellington; 2004.
32. Zimmet P, Alberti K, Shaw J. Global and societal implications of the diabetes epidemic. Nature. 2001;414(6865):782. doi: 10.1038/414782a 11742409
33. Ministry of Health. Annual update of key results 2015/16: New Zealand health survey. Ministry of Health.; 2016.
34. Sheridan NF, Kenealy TW, Kidd JD, Schmidt-Busby JIG, Hand JE, Raphael DL, et al. Patients' engagement in primary care: powerlessness and compounding jeopardy. A qualitative study. Health Expectations. 2015;18(1):32–43. doi: 10.1111/hex.12006 23033910
35. Wright S, Hornblow A. Emerging needs, evolving services: the health of Pacific peoples in New Zealand. Kotuitui: New Zealand Journal of Social Sciences Online. 2008;3(1):21–33.
36. Saldaña J. The coding manual for qualitative researchers. Sage; 2015.
37. Braun V, Clarke V. Successful qualitative research: A practical guide for beginners. sage; 2013.
38. Guba EG. Criteria for assessing the trustworthiness of naturalistic inquiries. Ectj. 1981;29(2):75.
39. Pulotu-Endemann FK, Suaalii-Sauni T, Lui D, McNicholas T, Milne M, Gibbs T. Seitapu Pacific mental health and addiction cultural and clinical competencies framework. Auckland: The National Centre of Mental Health Research and Workforce Development. 2007.
40. Bodenheimer T, Lorig K, Holman H, Grumbach K. Patient self-management of chronic disease in primary care. Jama. 2002;288(19):2469–75. doi: 10.1001/jama.288.19.2469 12435261
41. Taylor SJ, Pinnock H, Epiphaniou E, Pearce G, Parke HL, Schwappach A, et al. A rapid synthesis of the evidence on interventions supporting self-management for people with long-term conditions: PRISMS–Practical systematic Review of Self-Management Support for long-term conditions. 2014.
42. Glasgow RE, Funnell MM, Bonomi AE, Davis C, Beckham V, Wagner EH. Self-management aspects of the improving chronic illness care breakthrough series: implementation with diabetes and heart failure teams. Annals of Behavioral Medicine. 2002;24(2):80–7. doi: 10.1207/S15324796ABM2402_04 12054323
43. Reid C, Seymour J, Jones C. A thematic synthesis of the experiences of adults living with hemodialysis. Clinical Journal of the American Society of Nephrology. 2016;11(7):1206–18. doi: 10.2215/CJN.10561015 27246010
44. Duggleby W, Hicks D, Nekolaichuk C, Holtslander L, Williams A, Chambers T, et al. Hope, older adults, and chronic illness: a metasynthesis of qualitative research. Journal of advanced nursing. 2012;68(6):1211–23. doi: 10.1111/j.1365-2648.2011.05919.x 22221185
45. Dufault K, Martocchio BC. Symposium on compassionate care and the dying experience. Hope: its spheres and dimensions. The Nursing Clinics of North America. 1985;20(2):379–91. 3846980
46. Herth K. Fostering hope in terminally‐ill people. Journal of advanced nursing. 1990;15(11):1250–9. doi: 10.1111/j.1365-2648.1990.tb01740.x 2269747
47. Borneman T, Irish T, Sidhu R, Koczywas M, Cristea M. Death awareness, feelings of uncertainty, and hope in advanced lung cancer patients: can they coexist? International journal of palliative nursing. 2014;20(6):271–7. doi: 10.12968/ijpn.2014.20.6.271 25040862
48. Rousseau P. Topics in review: Hope in the terminally ill. Western Journal of Medicine. 2000;173(2):117. doi: 10.1136/ewjm.173.2.117 10924437
49. Jowsey T. Time and chronic illness: a narrative review. Quality of life research. 2016;25(5):1093–102. doi: 10.1007/s11136-015-1169-2 26515815
50. Ellingsen S, Roxberg Å, Kristoffersen K, Rosland JH, Alvsvåg H. Entering a world with no future: A phenomenological study describing the embodied experience of time when living with severe incurable disease. Scandinavian Journal of Caring Sciences. 2013;27(1):165–74. doi: 10.1111/j.1471-6712.2012.01019.x 22708714
51. Arstila V, Lloyd D. Subjective time: The philosophy, psychology, and neuroscience of temporality. MIT Press Cambridge, MA, USA; 2014.
52. Moran A, Scott A, Darbyshire P. Waiting for a kidney transplant: patients’ experiences of haemodialysis therapy. Journal of advanced nursing. 2011;67(3):501–9. doi: 10.1111/j.1365-2648.2010.05460.x 20955183
53. Sheridan NF, Kenealy T, Salmon E, Rea H, Raphael D, Schmidt-Busby J. Helplessness, self blame and faith may impact on self management in COPD: A qualitative study. Primary care respiratory journal: journal of the General Practice Airways Group. 2011;20(3):14, 1 p following 314.
54. Tong A, Hanson CS, Chapman JR, Halleck F, Budde K, Josephson MA, et al. ‘Suspended in a paradox’—patient attitudes to wait‐listing for kidney transplantation: systematic review and thematic synthesis of qualitative studies. Transplant International. 2015;28(7):771–87. doi: 10.1111/tri.12575 25847569
55. Vannini P. Waiting dynamics: Bergson, Virilio, Deleuze, and the experience of global times. Journal of Mundane Behaviour. 2002;3(2):193–208.
56. Whitehead L, Jacob E, Towell A, Abu‐qamar Me, Cole‐Heath A. The role of the family in supporting the self‐management of chronic conditions: A qualitative systematic review. Journal of clinical nursing. 2018;27(1–2):22–30. doi: 10.1111/jocn.13775 28231630
57. Podsiadlowski A, Fox S. Collectivist value orientations among four ethnic groups: Collectivism in the New Zealand context. New Zealand Journal of Psychology. 2011;40(1):5–18.
58. Holder B. Family support and survival among African-American end-stage renal disease patients. Advances in renal replacement therapy. 1997;4(1):13–21. 8996616
59. Ministry of Health. Health and independence report 2016: The Director-General of health's annual report on the state of public health. Ministry of Health; 2017.
Článek vyšel v časopise
PLOS One
2019 Číslo 9
- S diagnostikou Parkinsonovy nemoci může nově pomoci AI nástroj pro hodnocení mrkacího reflexu
- Je libo čepici místo mozkového implantátu?
- Pomůže v budoucnu s triáží na pohotovostech umělá inteligence?
- AI může chirurgům poskytnout cenná data i zpětnou vazbu v reálném čase
- Nová metoda odlišení nádorové tkáně může zpřesnit resekci glioblastomů
Nejčtenější v tomto čísle
- Graviola (Annona muricata) attenuates behavioural alterations and testicular oxidative stress induced by streptozotocin in diabetic rats
- CH(II), a cerebroprotein hydrolysate, exhibits potential neuro-protective effect on Alzheimer’s disease
- Comparison between Aptima Assays (Hologic) and the Allplex STI Essential Assay (Seegene) for the diagnosis of Sexually transmitted infections
- Assessment of glucose-6-phosphate dehydrogenase activity using CareStart G6PD rapid diagnostic test and associated genetic variants in Plasmodium vivax malaria endemic setting in Mauritania
Zvyšte si kvalifikaci online z pohodlí domova
Všechny kurzy