Impact of pain and its consequences on biopsychosocial-spiritual function in patients with sickle-cell disease: a multi-phase, mixed methods study | oneSCDvoice
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Impact of pain and its consequences on biopsychosocial-spiritual function in patients with sickle-cell disease: a multi-phase, mixed methods study

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source: The journal of Pain

year: 2013

authors: A. Alsalman, J. Li Wong, B. Posner, W. Smith

summary/abstract:

Studies that have evaluated the role of pain and its consequences on the biopyschosocial-spiritual function of sickle cell disease (SCD) patients offer limited guidance toward understanding multi-level explanatory effects that simultaneously bridge all healthcare domains. Therefore, to better understand the multi-level impact of pain and its consequences on SCD individuals’ health and quality of life, we conducted a multi-phase mixed methods study consisting of quantitative and semi-structured qualitative interviews of African-American adults with SCD. The final sample consisted of 11 men and 10 women, with an average age of 36 years, ranging from a diverse background of socioeconomic and educational levels. A grounded theory approach was used to analyze the data. The data in this qualitative study portrayed explanatory factors that could be classified into various levels or domains based on models proposed in prior research. Factors included within-patient (biological, spiritual, psychological), and social and environmental (social support, provider relationships, institutional norms, culture, legal and governmental policy) domains. Specifically, patients reported their perceived feeling of being a burden on family members, that pain negatively impacts maintenance of family relationships, obligations, friendships, that pain inhibits social interactions, reduced participation in social or community obligates, interfered with activities of daily living, interfered with work and school productivity, cognitive abilities, and emotional well-being. Patients described their pain caused mistrust by physicians caring for them (especially emergency). Patients described their pain differed when they lived in cities with special sickle cell care. Specific negative emotional states included stress, feelings of guilt, and severe mental and physical exertion. In conclusion, qualitative interviews about pain in SCD suggest simultaneous effects on SCD patients of explanatory factors bridging multiple healthcare domains from individual care to healthcare policy. Implications from this study are that multi-level interventions will be required to improve the pain of individuals diagnosed with SCD.

organization: Virginia Commonwealth University, Richmond

DOI: 10.1016/j.jpain.2013.01.734

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