This study aimed to explore self-management practices among patients and parents of children with sickle cell disease (SCD).
Methods
The qualitative descriptive design was employed. The study involved 19 participants comprising adult SCD patients ≥16 years, and nine parents of SCD children ≤ 15 years. Purposive sampling was conducted to select participants from a teaching hospital and SCD association. Data was collected using one-on-one interviews, transcribed verbatim, and analysed using qualitative content analysis.
Results
Self-management was reported through four categories including preventive health, self-monitoring, self-diagnosis, and self-treatment. Hydration, nutrition, activity limitation, avoidance of cold temperatures, and supportive medications were the most common preventive health actions. Regarding self-monitoring and self-diagnosis, the parents emphasized objective indicators such as changes in urine and eye colour compared to the adults who utilize subjective indicators such as feeling unwell and easy fatigue. Pharmacological and non-pharmacological measures were reported by both groups for treating painful episodes, fever, leg ulcers, priapism, and unspecified symptoms.
Discussion
The participants in this study practice several self-management actions with some differences in application between adults and children. Tailored self-management services may be helpful for adults and children when developing services for SCD patients.
WHO. Global Epidemiology of haemoglobinopathies. In: Ohene-Frempong (2010). A paper presented at the first global conference on sickle cell disease in Ghana. 2009.
2.
ModellBDarlisonM. Global epidemiology of haemoglobin disorders and derived service indicators. B World Health Organ2008; 86: 480–487.
3.
PielFBPatilAPHowesRE, et al.Global epidemiology of sickle haemoglobin in neonates: a contemporary geostatistical model-based map and population estimates. Lancet2013; 381: 142–151.
4.
WHO. Sickle cell disease: A strategy for the WHO African Region (Sixteenth session), report of the regional director.
5.
Ohene-FrempongKOduroJTettehH, et al.Screening newborns for sickle cell disease in Ghana. Pediatrics2008; 121: S120.
6.
National Heart Lung & Blood Institute. The management of sickle cell disease. USA: NIH Publications, 2002.
7.
National Heart Lung & Blood Institute. Evidence-based management of sickle cell disease. Expert panel report. Bethesda (MD): National Heart, Lung, and Blood Institute, National Institutes of Health, 2014.
8.
National Heart Lung & Blood Institute. Evidenced-based management of sickle cell disease; Expert panel report. In: US Department of Health and Human Services: National Institute of Health, (ed.). 2014.
9.
ChakravortySWilliamsTN. Sickle cell disease: a neglected chronic disease of increasing global health importance. Arch Dis Child2015; 100: 48–53. 2014/09/23.
10.
AdamsKGreinerACCorriganJM. Report of a summit. The 1st annual crossing the quality chasm summit-A focus on communities. ed. Washington, DC: National Academies Press, 2004.
ConnVS. Helping patients help themselves: chronic disease self-management interventions. West J Nurs Res2011; 33: 159–160. DOI: https://doi.org/10.1177/0193945910386194
13.
MatthieNRossDSinhaC, et al.A qualitative study of chronic pain and self-management in adults with sickle cell disease. J Natl Med Assoc2019; 111: 158–168.
14.
MatthieNJeneretteCMcMillanS. Role of self-care in sickle cell disease. Pain Manag Nurs2015; 16: 257–266.
15.
JacobEDuranJStinsonJ, et al.Remote monitoring of pain and symptoms using wireless technology in children and adolescents with sickle cell disease. J Am Assoc Nurse Pract2013; 25: 42–54. Article.
16.
AhnSBasuRSmithML, et al.The impact of chronic disease self-management programs: healthcare savings through a community-based intervention. BMC public Health2013; 13: 1141. 2013/12/10.
17.
OryMGAhnSJiangL, et al.Successes of a national study of the chronic disease self-management program: meeting the triple aim of health care reform. Med Care2013; 51: 992–998. 2013/10/12.
18.
BradyTMurphyLBeauchesneD. Sorting through the evidence for the Arthritis Self-Management Program and the Chronic Disease Self-Management Program: executive summary of ASMP/CDSMP meta-analyses [Internet]. Atlanta (GA): Centers for Disease Control and Prevention;. 2011 May [cited 2012 Nov 5]. Joint publication of the Department of Health and Human Services, Washington (DC).
19.
RyanPSawinKJ. The individual and family self-management theory: background and perspectives on context, process, and outcomes. Nurs Outlook2009; 57: 217–225. e216.
20.
BourbeauJLavoieKSedenoM. Comprehensive self-management strategies. In: Semin Resp Crit Care 2015, pp.630-638. Thieme Medical Publishers.
21.
CrosbyLEWareREGoldsteinA, et al.Development and evaluation of iManage: a self-management app co-designed by adolescents with sickle cell disease. Pediatr Blood Cancer2017; 64: 139–145.
22.
PalermoTMZempskyWTDampierCD, et al.Icancope with sickle cell pain: design of a randomized controlled trial of a smartphone and web-based pain self-management program for youth with sickle cell disease. Contemp Clin Trials2018; 74: 88–96.
23.
TurnerRMMaQLorigK, et al.Evaluation of a diabetes self-management program: claims analysis on comorbid illnesses, health care utilization, and cost. J Med Internet Res2018; 20: e207.
24.
DampierCElyEEgglestonB, et al.Physical and cognitive-behavioral activities used in the home management of sickle pain: a daily diary study in children and adolescents. Paediatric Blood & Cancer2004; 43: 674–678.
25.
YoonSLGodwinA. Enhancing self-management in children with sickle cell disease through playing a CD-ROM educational game: A pilot study. Pediatric Nursing 2007; 33: 61–63.
26.
CrosbyLEJoffeNEPeughJ, et al.Pilot of the chronic disease self-management program for adolescents and young adults with sickle cell disease. J Adolescent Health2017; 60: 120–123.
27.
JacobEStinsonJDuranJ, et al.Usability testing of a smartphone for accessing a web-based e-diary for self-monitoring of pain and symptoms in sickle cell disease. J Pediatr Hematol Oncol2012; 34: 326–335.
28.
AhmadiMShariatiAJahaniS, et al.The effectiveness of self-management programs on self-efficacy in patients with sickle cell disease. Jundishapur Journal of Chronic Disease Care2014; 3: e21702.
29.
AhmadiMJahaniSPoormansouriS, et al.The effectiveness of self management program on quality of life in patients with sickle cell disease. Iran J Ped Hematol Oncol2015; 5: 18.
30.
AhmadiMPoormansouriS. Effectiveness of self-management educational program on fatigue in sickle cell patients. Journal of Clinical Nursing and Midwifery2015; 4: 29–42.
31.
EzenwaMOYaoYNguyenM-NT, et al.Randomized pilot study: a Mobile technology-based self-management intervention for sickle cell pain. West J Nurs Res2020; 42: 629–639.
32.
JeneretteCMBrewerCLeakAN. Self-care recommendations of middle-aged and older adults with sickle cell disease. Nurs Res Pract2011; 2011: 270594. DOI: https://doi.org/10.1155/2011/270594
33.
TanabePPorterJCrearyM, et al.A qualitative analysis of best self-management practices: sickle cell disease. J Natl Med Assoc2010; 102: 1033–1041. 2010/12/15.
34.
MatthieNJeneretteC. Understanding the self-management practices of young adults with sickle cell disease. J Sick Cell Dis Hemoglobinopathies2017; 2017: 76–87.
35.
KimHSefcikJSBradwayC. Characteristics of qualitative descriptive studies: a systematic review. Res Nurs Health2017; 40: 23–42.
36.
HsiehHFShannonSE. Three approaches to qualitative content analysis. Qual Health Res2005; 15: 1277–1288.
JeneretteCMLauderdaleG. Successful aging with sickle cell disease: using qualitative methods to inform theory. J Theory Constr Test2008; 12: 16–24.
39.
DruyeARobinsonBNelsonK. Self-management recommendations for sickle cell disease: a Ghanaian health professionals’ perspective. Health Science Reports2018; 1: e88.
40.
BallasSK. Self-management of sickle cell disease: a new frontier. J Natl Med Assoc2010; 102: 1042–1043. 2010/12/15.
41.
NicolJ. Nursing adults with long term conditions. London: Sage, 2011.
42.
YoonSLBlackS. Comprehensive, integrative management of pain for patients with sickle-cell disease. Journal of Alternative & Complementary Medicine2006; 12: 995–1001.
43.
BusariAMufutauM. High prevalence of complementary and alternative medicine use among patients with sickle cell disease in a tertiary hospital in lagos, south west, Nigeria. BMC Complement Altern Med2017; 17: 299.
44.
Ampomah GyamfuahIKumi-KyeremeADartehEK, et al.Perceptions of the aged about traditional and modern medicines in yamoransa, Ghana. J Community Health2015; 40: 235–244. 2014/08/12.
45.
LevensonJLMcClishDKDahmanBA, et al.Alcohol abuse in sickle cell disease: the PISCES project. Am J Addiction2007; 16: 383–388. Article.
46.
HowardJAnieKAHoldcroftA, et al.Cannabis use in sickle cell disease: a questionnaire study. Br J Haematol2005; 131: 123–128. 2005/09/22.
47.
CurtisSABrandowAMDeVeauxM, et al.Daily Cannabis Users with Sickle Cell Disease Show Fewer Admissions than Others with Similar Pain Complaints. Cannabis and Cannabinoid Research2020; 5: 255–262.
48.
RobertsJDSpodickJColeJ, et al.Marijuana use in adults living with sickle cell disease. Cannabis and Cannabinoid Research2018; 3: 162–165.
49.
IheanachoOEzenwenyiIEnosoleaseM. Pentazocine abuse in Sickle Cell Disease Patients Seen at a Tertiary Hospital in Nigeria: A Chronic Menace. 2015.
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