The psychosocial experience of people with sickle cell disease and its impact on quality of life: Qualitative findings from focus groups

Abstract

OBJECTIVES: In this exploratory study, an in-depth analysis of accounts of the experiences of people with sickle cell disease (SCD) was undertaken to gain an understanding of the psychosocial impact of the disease. An additional aim of the study was to determine whether these experiences could be conceptualized in terms of quality of life as defined by the World Health Organization (WHOQOL) with the intention of informing psychosocial research. DESIGN: This study utilized a series of non-directive, patient-led, focus groups that specifically addressed the ways in which sickle cell disease impacts on life. Participants were recruited from four centres in London and eight focus group discussions (each one hour in length) were held separately for each centre. METHOD: Altogether 32 hours of focus group materials were tape-recorded and transcribed verbatim. Data were analysed using a phenomenological approach to identify emerging themes. RESULTS: Six themes were identified: Growing up with SCD; Education; Impact of the unremitting nature of the disease; Employment; Effects on relationships; and Hospitalization. CONCLUSION: This research has clearly shown that SCD carries a huge psychosocial burden impacting on physical, psychological, social and occupational well-being as well as levels of independence and environment. These aspects of life are equivalent to the core domains of the multi-dimensional WHOQOL and consequently we have argued that SCD undermines quality of life in important ways. The paper provides a rich source of qualitative data to complement quantitative findings and provides detail of the complex human processes and experiences consequent on a life-long chronic illness such as SCD.

Doença falciforme e qualidade de vida: um estudo da percepção subjetiva dos pacientes da Fundação Hemominas, Minas Gerais, Brasil

“…18 Devido aos impactos físico, psicológi-co e social da DF, tanto os aspectos objetivos quanto os subjetivos da vida devem ser considerados como importantes para a compreensão da QV dos pacientes. 19 De acordo com a Organização Mundial de Saúde (OMS), 20 QV é a percepção do indivíduo sobre sua posição na vida, no contexto da cultura e dos sistemas de valores nos quais ele vive, e em relação a seus objetivos, expectativas, padrões e preocupações. Presente nessa definição aspectos fundamentais referentes à multidimensionalidade, à subjetividade e à presença de elementos positivos (ex.…”

The Construction of Sickle Cell Disorder in Saudi Arabia: The Invisible Disease

“…More recently, alternative research approaches, largely within the social sciences, have been applied to the broad area of SCD. Some methodological examples are grounded theory (Caird, Camic, & Thomas, 2011), ethnography (Benjamin, 2011), and phenomenology (Thomas & Taylor, 2002). As have argued, social research on SCD should be both theoretically informed and focused on people living with SCD and not simply subjecting those people to research.…”

“…Reasons that give support to further research on SCD are the chronic nature of the disease, its structural complexities, and the experiences of patients and their families. Sickle cell disease is a major health problem that negatively impacts upon the physical, psychological and social dimensions of the lives of those affected by SCD (Thomas & Taylor, 2002). It is also well-recognised that the burden of this condition extends beyond those afflicted and theirfamiliestosocietyingeneral (Alswaidi&O'Brien,2009;Thomas & Taylor, 2002).…”

“…Sickle cell disease is a major health problem that negatively impacts upon the physical, psychological and social dimensions of the lives of those affected by SCD (Thomas & Taylor, 2002). It is also well-recognised that the burden of this condition extends beyond those afflicted and theirfamiliestosocietyingeneral (Alswaidi&O'Brien,2009;Thomas & Taylor, 2002). In the words of Thomas, Dixon, and Milligan (1999); "Individuals with SCD live under the threat of an early and sudden death related to the disease and its complications" (p. 210).…”

“…It has been found that misconceptions of healthcare workers in assuming, for example, that people with SCD need drugs for purposes other than pain, impacted on experiences during hospitalisation and increased the suffering of patients (Harris, Parker, & Barker, 1998;Thomas & Taylor, 2002). Furthermore, Maxwell et al (1999) stressed that management strategies in the healthcare system regarding pain associated with SCD negatively impacted on the patients in undermining self-confidence and increasing health organisation dependence.…”