The lived experiences of adolescents with sickle cell disease in Kingston, Jamaica (original) (raw)
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The Daily Experiences of Adolescents in Lebanon With Sickle Cell Disease
Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners, 2015
Despite the psychosocial and physical consequences associated with sickle cell disease (SCD), the daily lived experience of adolescents diagnosed with this disease is a phenomenon rarely described. The objective of this study was to explore the daily lived experience of adolescents with SCD living in Lebanon. Twelve adolescents with SCD between the ages of 12 and 17 years were interviewed with use of a semi-structured interview during a routine follow-up visit after they were assessed as being pain free. Interviews were transcribed verbatim, and thematic analysis was conducted. Adolescents with SCD experience a layered burden consisting of physical, emotional, and sympathetic pain that affects much of their daily personal and social lives. Nevertheless, they seem to claim normalcy and to downplay their pain and suffering in order to limit their caregivers' distress. These findings can be used to assist health care providers in designing culturally sensitive interventions specifi...
International journal of nursing studies, 2017
Sickle Cell Disease is the commonest monogenic haemoglobinopathy worldwide. Living with a long-term condition such as sickle cell disease during adolescence constitutes a significant challenge for the key stakeholders due to the combined effects of chronic illness and adolescent development. For adolescents with sickle cell disease to be cared for and supported appropriately and effectively, it is crucial that health professionals have a comprehensive knowledge and understanding of how adolescents experience living with the condition. While there is developing literature about how adolescent's experience sickle cell disease, this body of research has not been critically reviewed and synthesised. To identify, critically appraise and synthesise primary research exploring…
Lived Experiences of Adults with Sickle Cell Disease: A Qualitative Study, Dar es Salaam, Tanzania
Lived Experiences of Adults with Sickle Cell Disease, 2022
Background: Sickle Cell Disease (SCD) is most common genetic disorder and its prevalence in sub-Saharan Africa is increasing. Despite increased survival rates, experiences of adults living with SCD in Tanzania is not well explored. This article provides perceived causes of pain crisis, pain self-management approaches and psychosocial implication of SCD. Aim: This study aimed at exploring experiences of adults living with SCD regarding pain triggering or aggravating factors; self-management for pain; psychosocial-economical implication of SCD and coping mechanism used by individuals living with SCD Methods: A qualitative study design was chosen using in-depth interviews with adults living with SCD to explore their experience of living with SCD. Fifteen adults aged 18 years and above living with SCD were interviewed. Data were analyzed by using content analysis approach. Findings: Four categories emerged that described experiences of individuals with SCD. The four categories are; "Pain Triggering and Aggravating Factors" describing participants' perceived factors causing pain in SCD; "Self-care remedies for the pain" referring to participants' methods for self-management of pain; "Psychosocial-economic impact of illness" referring to participants' experience of implication of illness on social and economic life and "Dealing and coping with illness" referring to experience of participants on management and coping strategies used to live with the illness. Conclusion: Individuals with SCD experiences several episodes of pain that affect their quality of life. Pain episode can be triggered or aggravated by various factors. Several approaches are used by individuals with SCD to self-manage the pain including taking rest, drinking plenty of water or using pain relieving medication. Care for individuals with SCD should be comprehensive and include proper management of pain, health education on home-based intervention for sickle cell pain, supportive services to deal with psychosocial implications of SCD and improving coping strategies to live with the illness.
School ethos and variation in health experience of young people with sickle cell disorder at school
Young people with the serious chronic illness, such as sickle cell disorder, report high levels of negative experiences at school that have adverse effects on their health. Disclosure of sickle cell status appears unrelated to improved experiences, and alternative explanations for variable health experiences at school are required. This paper draws on a multi-methods study of young people with sickle cell disorder in England in an attempt to make sense of variable experiences unrelated to disease severity or to teacher/peer awareness of sickle cell. School ethos, the manner in which school-based interactions combine to bring into effect school values, including attitudes expected of young people, attitudes expected of teachers, how young people relate to each other, how young people relate to staff, how the school relates to the community and a holistic concern with the spiritual, moral, cultural and social development of the young person. It is proposed that these interactions and resulting values are a key to understanding variable health experiences of young people with sickle cell disorder at school.
Anxious Lives: Exploring Lived Experience of Nigerian Sickle Cell Patients
This paper discusses the illness narratives of undergraduate students suffering from sickle cell anaemia. The study explores participants’ concept of the self in relation to the disease on the one hand, and on the other, the construction of their identity in relation to significant others, friends and the wider community in order to gain a deeper understanding of their symbolic and interactional meanings. Data was generated from six undergraduate students in a private university in south western Nigeria. The qualitative data collection techniques used included in-depth interviews, unobtrusive observation and informal group discussion. The study was conducted over a period of two years and the data were content analysed. The study found that sickle cell patients defined the disease as “natural” due to its hereditary nature. Participants’ experiences with the disease in relation to others were described as “frightening”, “stressful” and “delimiting” within a broad sociocultural framework that is characterized by empathy and endurance. The findings suggest a more focused awareness campaign that stresses cooperation and understanding of the disease and interactions with sickle cell patients.
Health Services and Delivery Research
Background Transitions from paediatric to adult health-care services cause problems worldwide, particularly for young people with long-term conditions. Sickle cell disorder brings particular challenges needing urgent action. Objectives Understand health-care transitions of young people with sickle cell disorder and how these interact with broader transitions to adulthood to improve services and support. Methods We used a longitudinal design in two English cities. Data collection included 80 qualitative interviews with young people (aged 13–21 years) with sickle cell disorder. We conducted 27 one-off interviews and 53 repeat interviews (i.e. interviews conducted two or three times over 18 months) with 48 participants (30 females and 18 males). We additionally interviewed 10 sickle cell disease specialist health-care providers. We used an inductive approach to analysis and co-produced the study with patients and carers. Results Key challenges relate to young people’s voices being igno...
Disability & Society
Sickle cell disorder (SCD) is a chronic illness that in England disproportionately affects marginalized ethnic groups, but has yet to feature extensively within educational or disability research. This review of existing literature makes the case for a sustained developmental research programme around SCD, disability and education. There are potentially life‐saving decisions that could be made by teachers in caring for a child with SCD. The place of the school as a venue for health screening with respect to vision, hearing and dental care is also complicated by SCD. The lack of a formal school policy to address the combined episodic and longer term school absences correlated with SCD clearly disadvantages a group of pupils whose academic potential may already have been curtailed by teacher expectations based on their ethnicity. Both the physical and social milieu of the school could be adapted so that the environmental triggers of severe painful episodes associated with SCD are grea...