“Body as a Machine”: How Adolescents With Sickle Cell Disease Construct Their Fatigue Experiences (original) (raw)
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Biographical accounts of the impact of fatigue in young people with sickle cell disease
Sociology of Health and Illness, 2022
Children and young people (CYP) with sickle cell disease (SCD) are a 'missing voice' in the debate on biography and sociology of chronic illness, meaning we know little about the social consequences of the illness for CYP. This paper examines the meaning of fatigue (a common symptom) for adolescents with SCD. Analysing 24 in-depth interviews with adolescents aged 12-17 years in Ghana, we draw on the distinction proposed by Bury (1988) between 'meanings as significance' and 'meanings as consequence' to examine biographical aspects of fatigue. We argue that concepts of 'biographical disruption' and 'normal illness' do not easily accommodate the experience of CYP with congenital chronic illnesses like SCD, as their sense of (un)disruption and normality/continuity is contextualised relative to normative expectations about what it is to be a young person. At biographical transition points, illness/symptoms present from birth may evolve, shift and become experienced as 'new', 'different', or 'non-normal'. They may become restrictive rather than continuous or disruptive. These experiences are influenced primarily by normative biographical expectations and the pursuit of identity affirmations. We propose that biographical restriction, biographical enactment,
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.
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...
The lived experiences of adolescents with sickle cell disease in Kingston, Jamaica
International Journal of Qualitative Studies on Health and Well-Being, 2015
Aim: To explore the lived experiences of adolescents with sickle cell disease, in Kingston, Jamaica. Method: A descriptive qualitative design was used for this research. In-depth interviews were conducted with six adolescents with sickle cell disease at a Sickle Cell Unit operated by the University of the West Indies. Interviews were audiotaped, transcribed, and thematically analyzed. Results: The majority of the adolescents demonstrated a positive self-concept. They reported strong family, school, and peer support which made them feel accepted. All were actively engaged in social activities such as parties, but had challenges participating in sporting activities. Various coping strategies were utilized to address challenges of the disease including praying, watching television, and surfing the Internet. Conclusion: Sickle cell disease can be very challenging for the adolescent, but with positive self-concept and increased social support, especially from family and peers, these adolescents were able to effectively cope with their condition and live productive lives.
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.
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…
Psychosocial impact of sickle cell disorder: perspectives from a Nigerian setting
Globalization and Health, 2010
Sickle Cell Disorder is a global health problem with psychosocial implications. Nigeria has the largest population of people with sickle cell disorder, with about 150,000 births annually. This study explored the psychosocial impact of sickle cell disorder in 408 adolescents and adults attending three hospitals in Lagos, Nigeria. A questionnaire was designed for the study, with some of commonly described areas of psychosocial impact including general public perceptions and attitudes, education, employment, and healthcare issues, and emotional responses. The majority of participants thought that society in general had a negative image of SCD, and reported negative perceptions and attitudes. Some issues in education, employment, and healthcare were expressed, however these were in the minority of cases. The results also showed that depressive feelings were experienced in almost half the study population, even though feelings of anxiety or self-hate were uncommon. Clinical implications of these findings are considered.