Highlights
- •The level of support given to Sickle Cell Disease patients is, to a large extent influenced by the dynamics of intra-family relations and the emotional state of family members who are mostly their caretakers.
- •This study, therefore, identified the psychosocial challenges and coping strategies employed by caretakers of children and adolescents with Sickle Cell Disease in Mbale Regional Referral Hospital.
Abstract
Background
Families of children and adolescents living with sickle cell disease face several
challenges ranging from psycho-social to social-economic challenges. This study aimed
to explore psycho-social challenges experienced by caretakers of children and adolescents
aged 0–19 years with SCD and the various coping mechanisms.
Methods
A mixed-methods cross-sectional study was carried out among caregivers of children
with SCD who were admitted to the pediatric wards of the Mbale Regional Referral Hospital
from September 2019 to November 2019. A total of 333 participants were interviewed
using a pretested questionnaire and 11 in-depth interviews were conducted.
Results
Most participants 285(85.59%) reported that they experienced psychological challenges
and almost all the participants in this study 297(89.19%) experienced social challenges
during the care of their patients. Only 36(10.81%) reported not experiencing any social
challenges. Almost all the participants reported coping with the situation in various
ways of which, 296(88.89%) used acceptance, 9(2.7%) still lived in denial, while 9(2.7%)
used talking with others and getting counseled to reduce the intensity of the feelings
experienced.
Three themes were generated from the in-depth interviews; knowledge of the child's
health condition; common symptoms and care, the experience of psycho-social challenges,
and coping strategies.
Conclusion
Sickle cell disease has affected two sets of people; the people living with the disease
and those who are caring for their loved ones. Being conscious of this will help health
practitioners to be more empathetic to patients and caregivers when treating people
living with sickle cell disease. The biggest proportion of caretakers of children
and adolescents 0–19 years experienced psycho-social challenges. The main coping strategy
used by the caretakers was acceptance.
Keywords
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References
- Management of sickle cell disease: A review for physician education in Nigeria (sub-saharan Africa).Anemia. 2015; 2015791498
- Socio-demographic characteristics and psychosocial consequences of sickle cell disease: The case of patients in a public hospital in Ghana.Journal of Health, Population, and Nutrition. 2017; 36: 4
- Psychosocial impact of sickle cell disorder: Perspectives from a Nigerian setting.Globalization and Health. 2010; 6: 2
- Prevalence of psychological symptoms among adults with sickle cell disease in Korle-Bu Teaching Hospital, Ghana.BMC Psychol. 2016; 4: 53
- Orexin activation counteracts decreases in nonexercise activity thermogenesis (NEAT) caused by high-fat diet.Physiology & Behavior. 2017; 176: 139-148
- Socioeconomic and demographic characteristics of sickle cell disease patients from a low-income region of northeastern Brazil.Revista Brasileira de Hematologia e Hemoterapia. 2015; 37: 172-177
- The effect of suppressing and not accepting emotions on depressive symptoms: Is suppression different for men and women?.Personality and Individual Differences. 2010; 49: 582-586
- Acceptance and commitment therapy for family caregivers: A systematic review and meta-analysis.Journal of Health Psychology. 2021; 26: 82-102
- Patient and healthcare provider knowledge, attitudes and barriers to handover and healthcare communication during chronic disease inpatient care in India: A qualitative exploratory study.BMJ Open. 2019; 9e028199
- Psychological therapies for generalised anxiety disorder.Cochrane Database of Systematic Reviews. 2007; 2007: Cd001848
- Sickle cell disease in Africa: Burden and research priorities.Annals of Tropical Medicine and Parasitology. 2007; 101: 3-14
- Adjustment and coping in adults with sickle cell disease: An assessment of research evidence.British Journal of Health Psychology. 1996; 1: 95-111
- The burden of sickle cell disease to parents of sufferers in Nigeria.SOJ Genet Sci. 2016; 3: 1-5
- Health seeking behaviour and challenges in utilising health facilities in Wakiso district, Uganda.Afr Health Sci. 2014; 14: 1046-1055
- Burden of sickle cell trait and disease in the Uganda sickle surveillance study (US3): A cross-sectional study.The Lancet Global Health. 2016; 4: e195-e200
- Psychosocial burden of sickle cell disease on caregivers in a Nigerian setting.Journal of the National Medical Association. 2002; 94: 1058-1070
- Prevalence and burden of sickle cell disease among undergraduates of Obafemi Awolowo University, Ile-Ife.Journal of Community Medicine and Primary Health Care. 2017; 29: 74-80
- Characterising demographics, knowledge, practices and clinical care among patients attending sickle cell disease clinics in Eastern Uganda.Wellcome Open Res. 2020; 5: 87
- Existence, triggers, and coping with chronic sorrow: A qualitative study of caretakers of children with sickle cell disease in a National Referral Hospital in Kampala, Uganda.BMC Psychol. 2018; 6: 50
- Caregiver stress and mental health: Impact of caregiving relationship and gender.Gerontologist. 2016; 56: 1102-1113
- Global distribution of the sickle cell gene and geographical confirmation of the malaria hypothesis.Nature Communications. 2010; 1: 104
- Advances in patient safety supporting family caregivers in providing care.in: Hughes R.G. Patient safety and quality: An evidence-based handbook for nurses. Agency for Healthcare Research and Quality (US), Rockville (MD)2008
- Psychosocial risk and management of physical diseases.J Behav Med. 2019; 42: 16-33
- Sickle cell disease in Uganda: a time for action.East Afr Med J. 2003; 80: 384-387
- The epidemiology of sickle cell disease in children recruited in infancy in Kilifi, Kenya: a prospective cohort study.The Lancet. Global health. 2019; 7: e1458-e1466
- Psychosocial burden of sickle cell disease on parents with an affected child in Cameroon.Journal of genetic counseling. 2014; 23: 192-201
- Sickle Cell Disease, 2019.2019
- Disease-specific health literacy, disease knowledge, and adherence behavior among patients with type 2 diabetes in Taiwan.BMC Public Health. 2018; 18: 1062
Article info
Publication history
Published online: November 30, 2022
Accepted:
November 22,
2022
Received in revised form:
November 22,
2022
Received:
May 24,
2022
Publication stage
In Press Corrected ProofIdentification
Copyright
© 2022 Published by Elsevier Inc.
