K Maxwell1, A Streetly, D Bevan. 1. Department of Public Health Sciences, Guy's, King's, and St Thomas's Schools of Medicine, Dentistry, and Biomedical Sciences, King's College London, London SE1 3QD.
Abstract
OBJECTIVE: To investigate how sociocultural factors influence management of pain from sickle cell disease by comparing the experiences of those who usually manage their pain at home with those who are more frequently admitted to hospital for management of their pain. DESIGN: Qualitative analysis of semistructured individual interviews and focus group discussions. PARTICIPANTS: 57 participants with genotype SS or S/beta-thal (44 subjects) or SC (9) (4 were unknown). 40 participants took part in focus groups, six took part in both focus groups and interviews, and nine were interviewed only. Participants were allocated to focus groups according to number of hospital admissions for painful crisis management during the previous year, ethnic origin, and sex. RESULTS: The relation between patients with sickle cell disease and hospital services is one of several major non-clinical dimensions shaping experiences of pain management and behaviour for seeking health care. Experiences of hospital care show a range of interrelated themes, which are common to most participants across variables of sex, ethnicity, and hospital attended: mistrust of patients with sickle cell disease; stigmatisation; excessive control (including both over- and undertreatment of pain); and neglect. Individuals respond to the challenge of negotiating care with various strategies. Patients with sickle cell disease who are frequently admitted to hospital may try to develop long term relationships with their carers, may become passive or aggressive in their interactions with health professionals, or may regularly attend different hospitals. Those individuals who usually manage their pain at home express a strong sense of self responsibility for their management of pain and advocate self education, assertiveness, and resistance as strategies towards hospital services. CONCLUSIONS: The current organisation and delivery of management of pain for sickle cell crisis discourage self reliance and encourage hospital dependence. Models of care should recognise the chronic nature of sickle cell disorders and prioritise patients' involvement in their care.
OBJECTIVE: To investigate how sociocultural factors influence management of pain from sickle cell disease by comparing the experiences of those who usually manage their pain at home with those who are more frequently admitted to hospital for management of their pain. DESIGN: Qualitative analysis of semistructured individual interviews and focus group discussions. PARTICIPANTS: 57 participants with genotype SS or S/beta-thal (44 subjects) or SC (9) (4 were unknown). 40 participants took part in focus groups, six took part in both focus groups and interviews, and nine were interviewed only. Participants were allocated to focus groups according to number of hospital admissions for painful crisis management during the previous year, ethnic origin, and sex. RESULTS: The relation between patients with sickle cell disease and hospital services is one of several major non-clinical dimensions shaping experiences of pain management and behaviour for seeking health care. Experiences of hospital care show a range of interrelated themes, which are common to most participants across variables of sex, ethnicity, and hospital attended: mistrust of patients with sickle cell disease; stigmatisation; excessive control (including both over- and undertreatment of pain); and neglect. Individuals respond to the challenge of negotiating care with various strategies. Patients with sickle cell disease who are frequently admitted to hospital may try to develop long term relationships with their carers, may become passive or aggressive in their interactions with health professionals, or may regularly attend different hospitals. Those individuals who usually manage their pain at home express a strong sense of self responsibility for their management of pain and advocate self education, assertiveness, and resistance as strategies towards hospital services. CONCLUSIONS: The current organisation and delivery of management of pain for sickle cell crisis discourage self reliance and encourage hospital dependence. Models of care should recognise the chronic nature of sickle cell disorders and prioritise patients' involvement in their care.
Authors: O S Platt; B D Thorington; D J Brambilla; P F Milner; W F Rosse; E Vichinsky; T R Kinney Journal: N Engl J Med Date: 1991-07-04 Impact factor: 91.245
Authors: Carlton Haywood; Sophie Lanzkron; Mark T Hughes; Rochelle Brown; Michele Massa; Neda Ratanawongsa; Mary Catherine Beach Journal: J Gen Intern Med Date: 2010-12-23 Impact factor: 5.128
Authors: Lakshmi Lattimer; Carlton Haywood; Sophie Lanzkron; Neda Ratanawongsa; Shawn M Bediako; Mary Catherine Beach Journal: J Health Care Poor Underserved Date: 2010-11
Authors: Timothy F Platts-Mills; Katie M Hunold; Andrey V Bortsov; April C Soward; David A Peak; Jeffrey S Jones; Robert A Swor; David C Lee; Robert M Domeier; Phyllis L Hendry; Niels K Rathlev; Samuel A McLean Journal: Pain Date: 2012-03-03 Impact factor: 6.961
Authors: Neda Ratanawongsa; Carlton Haywood; Shawn M Bediako; Lakshmi Lattimer; Sophie Lanzkron; Peter M Hill; Neil R Powe; Mary Catherine Beach Journal: Patient Educ Couns Date: 2009-02-23
Authors: Carlton Haywood; Shawn Bediako; Sophie Lanzkron; Marie Diener-West; John Strouse; Jennifer Haythornthwaite; Gladys Onojobi; Mary Catherine Beach Journal: Patient Educ Couns Date: 2014-05-23
Authors: Carlton Haywood; Marie Diener-West; John Strouse; C Patrick Carroll; Shawn Bediako; Sophie Lanzkron; Jennifer Haythornthwaite; Gladys Onojobi; Mary Catherine Beach Journal: J Pain Symptom Manage Date: 2014-04-15 Impact factor: 3.612