Lower limb chronic edema management program: Perspectives of disengaged patients on challenges, enablers and barriers to program attendance and adherence
Autoři:
Linda A. M. Khong aff001; Amma Buckley aff003; Wendy Johnson aff001; Vinicius Cavalheri aff004
Působiště autorů:
Physiotherapy Department, Sir Charles Gairdner Hospital, Nedlands, Western Australia, Australia
aff001; Institute for Health Research, University of Notre Dame Australia, Fremantle, Western Australia, Australia
aff002; Media, Cultural Studies and Social Inquiry, Curtin University, Perth, Western Australia, Australia
aff003; School of Physiotherapy and Exercise Science, Faculty of Health Sciences, Curtin University, Perth, Western Australia, Australia
aff004; Allied Health, South Metropolitan Health Service, Perth, Western Australia, Australia
aff005
Vyšlo v časopise:
PLoS ONE 14(11)
Kategorie:
Research Article
prolekare.web.journal.doi_sk:
https://doi.org/10.1371/journal.pone.0219875
Souhrn
Background
Chronic edema (CO) is a progressive, physically disfiguring and currently incurable condition. A multifaceted program has been recommended to manage the swelling. However, there is little evidence investigating patients’ perspectives following the program, particularly for those who have poor adherence and/or are disengaged.
Aim
To investigate the perceived challenges faced by disengaged participants with lower limb CO by identifying their enablers and barriers to participating in a Physiotherapy CO program.
Method
An exploratory qualitative approach was used. A purposive sampling strategy was adopted to recruit participants. Those with more than three months swelling and who had low adherence and/or attendance (disengaged) to the CO program were invited to participate. Semi-structured interviews with six participants from a CO clinic in a tertiary hospital were conducted. Data were thematically analyzed and findings in terms of enablers and barriers were subsequently reflected in the light of a theoretical framework.
Results
All six participants were morbidly obese (BMI 47 ± 4 kg/m2) with multiple chronic comorbidities. Enablers and barriers detected included physical, psychological and social factors that interplay to present multidimensional challenges that influence the participants’ adjustment to managing their CO. For the disengaged participants in this study, their under-managed lower limb CO was a progression towards being housebound and having a gradually increasing level of disability.
Conclusion
This study has identified the multidimensional challenges faced by low adherent and/or disengaged participants with lower limb CO to participating in a hospital-based CO program. Perceived enablers and barriers included physical, psychological and social factors. These were mapped using a health behavior change theoretical framework. Understanding these challenges has implications for developing a multidisciplinary approach aimed at enhancing patient engagement and participation in the physiotherapy CO program.
Klíčová slova:
Behavior – Obesity – Body limbs – Behavioral and social aspects of health – Motivation – Legs – Walking
Zdroje
1. Keeley V. Advances in understanding and management of lymphoedema (cancer, primary). Current Opinion in Supportive and Palliative Care. 2017;11(4):355–60. doi: 10.1097/SPC.0000000000000311 28984676
2. Moffatt CJ, Franks PJ, Doherty DC, Williams AF, Badger C, Jeffs E, et al. Lymphoedema: An underestimated health problem. QJM: An International Journal of Medicine. 2003;96(10):731–8. doi: 10.1093/qjmed/hcg126 14500859
3. Keast DH, Despatis M, Allen JO, Brassard A. Chronic oedema/lymphoedema: Under-recognised and under-treated. International Wound Journal. 2015;12(3):328–33. doi: 10.1111/iwj.12224 24618210
4. Moffatt CJ, Keeley V, Franks PJ, Rich A, Pinnington LL. Chronic oedema: A prevalent health care problem for UK health services. International Wound Journal. 2017;14(5):772–81. doi: 10.1111/iwj.12694 27917617
5. Morgan PA, Murray S, Moffatt CJ, Honnor A. The challenges of managing complex lymphoedema/chronic oedema in the UK and Canada. International Wound Journal. 2012;9(1):54–69. doi: 10.1111/j.1742-481X.2011.00845.x 21848727
6. Damstra RJ, van Steensel MA, Boomsma JH, Nelemans P, Veraart JC. Erysipelas as a sign of subclinical primary lymphoedema: A prospective quantitative scintigraphic study of 40 patients with unilateral erysipelas of the leg. British Journal of Dermatology. 2008;158(6):1210–5. doi: 10.1111/j.1365-2133.2008.08503.x 18363756
7. Szuba A, Rockson SG. Lymphedema: classification, diagnosis and therapy. Vascular Medicine. 1998;3(2):145–56. doi: 10.1177/1358836X9800300209 9796078
8. Moffatt C, Franks P, Keeley V, Murray S, Mercier G, Quere I. The development and validation of the LIMPRINT methodology. Lymphatic Research and Biology. 2019;17(2):127–34. doi: 10.1089/lrb.2018.0081 30995185
9. Quere I, Palmier S, Noerregaard S, Pastor J, Sykorova M, Dring E, et al. LIMPRINT: Estimation of the prevalence of lymphoedema/chronic oedema in acute hospital in In-Patients. Lymphatic Research and Biology. 2019;17(2):135–40. doi: 10.1089/lrb.2019.0024 30995191
10. Mercier G, Pastor J, Moffatt C, Franks P, Quere I. LIMPRINT: Health-related quality of life in adult patients with chronic edema. Lymphatic Research and Biology. 2019;17(2):163–7. doi: 10.1089/lrb.2018.0084 30995189
11. Fu MR, Ridner SH, Hu SH, Stewart BR, Cormier JN, Armer JM. Psychosocial impact of lymphedema: A systematic review of literature from 2004 to 2011. Psychooncology. 2013;22(7):1466–84. doi: 10.1002/pon.3201 23044512
12. Greene A, Meskell P. The impact of lower limb chronic oedema on patients' quality of life. International Wound Journal. 2017;14(3):561–8. doi: 10.1111/iwj.12648 27489034
13. Ridner SH, Shih YCT, Doersam JK, Rhoten BA, Schultze BS, Dietrich MS. A pilot randomized trial evaluating lymphedema self-measurement with bioelectrical impedance, self-care adherence, and health outcomes. Lymphatic Research and Biology. 2014;12(4):258–66. doi: 10.1089/lrb.2014.0017 25412401
14. Watts TE, Davies RE. A qualitative national focus group study of the experience of living with lymphoedema and accessing local multiprofessional lymphoedema clinics. Journal of Advanced Nursing. 2016;72(12):3147–59. doi: 10.1111/jan.13071 27400246
15. Moffatt CJ, Aubeeluck A, Franks PJ, Doherty DC, Mortimer P, Quere I. Psychological factors in chronic edema: A case-control study. Lymphatic Research and Biology. 2017;15(3):252–61. doi: 10.1089/lrb.2017.0022 28937923
16. International Society of Lymphology. The diagnosis and treatment of peripheral lymphedema: 2016 consensus document of the International Society of Lymphology. Lymphology. 2013;49(4):170–84.
17. Lymphoedema Framework. Best practice for the management of lymphoedema. International Consensus. 53 Hargrave Road, London N19 5SH, UK: Medical Education Partnership (MEP) Ltd; 2006. Available from: https://www.lympho.org/portfolio/best-practice-for-the-management-of-lymphoedema/
18. Stout N, Partsch H, Szolnoky G, Forner-Cordero I, Mosti G, Mortimer P, et al. Chronic edema of the lower extremities: International consensus recommendations for compression therapy clinical research trials. International Angiology. 2012;31(4):316–29. 22801397
19. Tzani I, Tsichlaki M, Zerva E, Papathanasiou G, Dimakakos E. Physiotherapeutic rehabilitation of lymphedema: State-of-the-art. Lymphology. 2018;51(1):1–12. 30248726
20. Stout NL, Brantus P, Moffatt C. Lymphoedema management: An international intersect between developed and developing countries. Similarities, differences and challenges. Global Public Health. 2012;7(2):107–23. doi: 10.1080/17441692.2010.549140 21360379
21. Bissonnette JM. Adherence: A concept analysis. Journal of Advanced Nursing. 2008;63(6):634–43. doi: 10.1111/j.1365-2648.2008.04745.x 18808585
22. Nelson EA, Harrison MB, Canadian Bandage Trial T. Different context, different results: Venous ulcer healing and the use of two high-compression technologies. Journal of Clinical Nursing. 2014;23(5–6):768–73. doi: 10.1111/jocn.12105 23845049
23. Van Hecke A, Grypdonck M, Defloor T. A review of why patients with leg ulcers do not adhere to treatment. Journal of Clinical Nursing. 2009;18(3):337–49. doi: 10.1111/j.1365-2702.2008.02575.x 19191982
24. World Health Organisation. Adherence to long-term therapies: Evidence for action. Geneva, Switzerland: 2003.
25. Nelson EA, Bell-Syer SE. Compression for preventing recurrence of venous ulcers. Cochrane Database Systematic Review. 2014;(9):CD002303. doi: 10.1002/14651858.CD002303.pub3 25203307
26. Van Hecke A, Verhaeghe S, Grypdonck M, Beele H, Defloor T. Processes underlying adherence to leg ulcer treatment: A qualitative field study. International Journal of Nursing Studies. 2011;48(2):145–55. doi: 10.1016/j.ijnurstu.2010.07.001 20692658
27. Ridner SH, Fu MR, Wanchai A, Stewart BR, Armer JM, Cormier JN. Self-management of lymphedema: A systematic review of the literature from 2004 to 2011. Nursing Research. 2012;61(4):291–9. doi: 10.1097/NNR.0b013e31824f82b2 22565103
28. Williams AF, Moffatt CJ, Franks PJ. A phenomenological study of the lived experiences of people with lymphoedema. International Journal of Palliative Nursing. 2004;10(6):279–86. doi: 10.12968/ijpn.2004.10.6.13270 15284623
29. Lasinski BB, Thrift KM, Squire D, Austin MK, Smith KM, Wanchai A, et al. A systematic review of the evidence for Complete Decongestive Therapy in the treatment of lymphedema from 2004 to 2011. Physical Medicine and Rehabilitation. 2012;4(8):580–601. doi: 10.1016/j.pmrj.2012.05.003 22920313
30. Improved Clinical Effectiveness through Behavioural Research Group (ICEBeRG). Designing theoretically-informed implementation interventions. Implemention Science. 2006;1:4. doi: 10.1186/1748-5908-1-4 16722571
31. Rimer B, Glanz K. Theory at a glance. A guide for health promotion practice2005. Available from: https://pubs.cancer.gov/ncipl/detail.aspx?prodid=T052.
32. Barlow S, Dixey R, Todd J, Taylor V, Carney S, Newell R. ‘Abandoned by Medicine’? A qualitative study of women's experiences with lymphoedema secondary to cancer, and the implications for care. Primary Health Care Research & Development. 2014;15(4):452–63. doi: 10.1017/S1463423613000406 25146257
33. Morse JM. Simultaneous and sequential qualitative mixed method designs. Qualitative Inquiry. 2010;16(6):483–91. doi: 10.1177/1077800410364741
34. Creswell JW, Plano Clark VL. Designing and conducting mixed methods research. 2nd ed. Los Angeles, Calif.: SAGE Publications; 2011.
35. Moffatt C, Partsch H, Schuren J, Quéré I, Sneddon M, Flour M, et al. Compression Therapy: A position document on compression bandaging, 2012. Available from: https://www.lympho.org/portfolio/compression-therapy-a-position-document-on-compression-bandaging/
36. Patton MQ. Designing qualitative studies. Qualitative research & evaluation methods: Integrating theory and practice. 4th ed. Thousand Oaks, California: SAGE Publications Inc.; 2015. p. 243–326.
37. Dial M, Holmes J, McGownd R, Wendler MC. "I do the best I can:" Personal care preferences of patients of size. Applied Nursing Research. 2018;39:259–64. doi: 10.1016/j.apnr.2017.11.028 29422169
38. Holdsworth E, Thorogood N, Sorhaindo A, Nanchahal K. A qualitative study of participant engagement with a weight loss intervention. Health Promotion Practice. 2017;18(2):245–52. doi: 10.1177/1524839916659847 27466266
39. Tidhar D, Katz-Leurer M. Aqua lymphatic therapy in women who suffer from breast cancer treatment-related lymphedema: A randomized controlled study. Support Care Cancer. 2010;18(3):383–92. doi: 10.1007/s00520-009-0669-4 19495810
40. Michie S, van Stralen MM, West R. The behaviour change wheel: A new method for characterising and designing behaviour change interventions. Implementation Science. 2011;6(1):42. doi: 10.1186/1748-5908-6-42 21513547
41. Cane J, O'Connor D, Michie S. Validation of the theoretical domains framework for use in behaviour change and implementation research. Implementation Science. 2012;7(1):1–17. doi: 10.1186/1748-5908-7-37 22530986
42. Beenstock J, Sniehotta FF, White M, Bell R, Milne EM, Araujo-Soares V. What helps and hinders midwives in engaging with pregnant women about stopping smoking? A cross-sectional survey of perceived implementation difficulties among midwives in the North East of England. Implementation Science. 2012;7:36. doi: 10.1186/1748-5908-7-36 22531641
43. French SD, Green SE, O'Connor DA, McKenzie JE, Francis JJ, Michie S, et al. Developing theory-informed behaviour change interventions to implement evidence into practice: A systematic approach using the Theoretical Domains Framework. Implementation Science. 2012;7. doi: 10.1186/1748-5908-7-38 22531013
44. Khong LAM, Berlach RG, Hill KD, Hill A-M. Design and development of a theory-informed peer-led falls prevention education programme to translate evidence into practice: A systematic approach. International Journal of Health Promotion and Education. 2018:1–16. doi: 10.1080/14635240.2018.1479650
45. McCormack A, Fortnum H. Why do people fitted with hearing aids not wear them? International Journal of Audiology. 2013;52(5):360–8. doi: 10.3109/14992027.2013.769066 23473329
46. QSR International Pty Ltd. NVivo Qualitative data analysis software. Version 10. 2012.
47. Miles MB, Huberman AM, Saldana J. Qualitative data analysis: A methods sourcebook. 3rd ed. Thousand Oaks, CA: SAGE Publications, Inc; 2014.
48. Bazeley P. Analysing qualitative data: More than ‘identifying themes’. Malaysian Journal of Qualitative Research. 2009;2(2):6–22.
49. Lincoln YS, Guba EG. Establishing trustworthiness. In: Guba EG, editor. Naturalistic inquiry. Beverly Hills, CA: Sage Publications; 1985. p. 289–331.
50. Australian Bureau of Statistics. Socio-economic indexes for areas-postal areas. Belconnen, ACT: Australian Bureau of Statistics, 2013 ABS catalogue 2033.0.55.001.
51. Tidhar D, Armer J. The meaning of success in lymphoedema management. Journal of Lymphoedema. 2018;13(1):37–42.
52. Helgeson VS, Zajdel M. Adjusting to chronic health conditions. Annual Review of Psychology. 2017;68:545–71. doi: 10.1146/annurev-psych-010416-044014 28051935
53. Helgeson VS, Jakubiak B, Van Vleet M, Zajdel M. Communal coping and adjustment to chronic illness: Theory update and evidence. Personality and Social Psychology Review. 2018;22(2):170–95. doi: 10.1177/1088868317735767 29053057
54. Australian Institute of Health and Welfare. Australia’s health 2018. Canberra: AIHW; 2018.
55. Mehrara BJ, Greene AK. Lymphedema and obesity: Is there a link? Plastic & Reconstructive Surgery. 2014;134(1):154e–60e. doi: 10.1097/PRS.0000000000000268 25028830
56. Savetsky IL, Torrisi JS, Cuzzone DA, Ghanta S, Albano NJ, Gardenier JC, et al. Obesity increases inflammation and impairs lymphatic function in a mouse model of lymphedema. American Journal of Physiology Heart and Circulatory Physiology. 2014;307(2):H165–72. doi: 10.1152/ajpheart.00244.2014 24858842
57. Michie S, Atkins L, West R. The behaviour change wheel: A guide to designing interventions. UK: Silverback Publishing; 2014. 329 p.
58. Bodenheimer T, Wagner EH, Grumbach K. Improving primary care for patients with chronic illness.The chronic care model, Part 2. JAMA. 2002;288(15):1909–14. doi: 10.1001/jama.288.15.1909 12377092
59. Harvey G, Dollard J, Marshall A, Mittinty MM. Achieving integrated care for older people: Shuffling the deckchairs or making the system watertight for the future? International Journal of Health Policy and Management. 2018;7(4):290–3. doi: 10.15171/ijhpm.2017.144 29626395
60. Mattke S, Mengistu T, Klautzer L, Sloss EM, Brook RH. Improving care for chronic conditions: Current practices and future trends in health plan programs. Rand Health Quarterly. 2015;5(2):3. 28083379
61. Moffatt CJ, Gaskin R, Sykorova M, Dring E, Aubeeluck A, Franks PJ, et al. Prevalence and risk factors for chronic edema in U.K. community nursing services. Lymphatic Research and Biology. 2019;17(2):147–54. doi: 10.1089/lrb.2018.0086 30995181
62. Runowicz CD. Lymphedema: Patient and provider education. Cancer. 1998;83(S12B):2874–6. doi: 10.1002/(SICI)1097-0142(19981215)83:12B+<2874::AID-CNCR42>3.0.CO;2–4
63. Tinetti ME, Green AR, Ouellet J, Rich MW, Boyd C. Caring for patients with multiple chronic conditions. Annals of Internal Medicine. 2019;170:199–200. doi: 10.7326/M18-3269 30665237
64. Faugier J, Sargeant M. Sampling hard to reach populations. Journal of Advanced Nursing. 1997;26(4):790–7. doi: 10.1046/j.1365-2648.1997.00371.x 9354993
65. Watts G. Why the exclusion of older people from clinical research must stop. British Medical Journal. 2012;344:e3445. doi: 10.1136/bmj.e3445 22613873
Článok vyšiel v časopise
PLOS One
2019 Číslo 11
- Metamizol jako analgetikum první volby: kdy, pro koho, jak a proč?
- Nejasný stín na plicích – kazuistika
- Masturbační chování žen v ČR − dotazníková studie
- Úspěšná resuscitativní thorakotomie v přednemocniční neodkladné péči
- Dlouhodobá recidiva a komplikace spojené s elektivní operací břišní kýly
Najčítanejšie v tomto čísle
- A daily diary study on maladaptive daydreaming, mind wandering, and sleep disturbances: Examining within-person and between-persons relations
- A 3’ UTR SNP rs885863, a cis-eQTL for the circadian gene VIPR2 and lincRNA 689, is associated with opioid addiction
- A substitution mutation in a conserved domain of mammalian acetate-dependent acetyl CoA synthetase 2 results in destabilized protein and impaired HIF-2 signaling
- Molecular validation of clinical Pantoea isolates identified by MALDI-TOF