Why does your pain never get better? Stigma and coping mechanism in people with sickle cell disease

ABSTRACT Objectives: to analyze the characteristics of stigma in the interactions of people with pain and sickle cell disease and the coping strategies adopted. Methods: qualitative study, conducted in Bahia’s reference units between January and July 2018. In-depth interviews were applied to 25 adults, followed by content analysis and interpretation in light of the Sociological Theory of Stigma. Results: four categories emerged from the data: Stigma in interactions with family members; Stigma in interactions with people in the general public; Stigma in interactions with health workers; and Strategies for coping with stigma. Final Considerations: in the participants’ interactions, stigma produced discrediting pain reports, labeling and stereotyping, blaming patients for not improving their health, discrimination, racism, inadequate pain assessment, and delay in care. Coping included silencing, covering up, aggressive behavior, exposure to risk, reading religious texts and praises, and church attendance.

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Psychological Distress and Coping in Sickle Cell Disease: Comparison of British and Jamaican Attitudes

Ethnicity and Health ◽

10.1080/13557850120068450 ◽

2001 ◽

Vol 6 (2) ◽

pp. 129-136 ◽

Cited By ~ 13

Author(s):

Veronica J. Thomas ◽

Ian Hambleton ◽

Graham Serjeant

Keyword(s):

Psychological Distress ◽

Sickle Cell Disease ◽

Sickle Cell ◽

Cell Disease ◽

And Coping

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Book reviews : Sickle Cell Disease: a guide for health workers, patients and carers

Race & Class ◽

10.1177/030639689103200413 ◽

1991 ◽

Vol 32 (4) ◽

pp. 106-108

Author(s):

Anita Maynard

Keyword(s):

Sickle Cell Disease ◽

Sickle Cell ◽

Health Workers ◽

Cell Disease

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Lived Experiences Of Pregnancy Among Women With Sickle Cell Disease Receiving Care At Mulago Hospital: A Qualitative Study

10.21203/rs.2.13857/v1 ◽

2019 ◽

Author(s):

KENNETH TUMWESIGE ◽

Namagembe Imelda ◽

Kayiga Herbert ◽

Munube Deogratias ◽

Rujumba Joseph

Keyword(s):

Sickle Cell Disease ◽

Sickle Cell ◽

Lived Experiences ◽

Health Workers ◽

Hospital Charges ◽

Premature Delivery ◽

Mulago Hospital ◽

Cell Disease ◽

Positive Health ◽

Healthcare Experiences

Abstract Background Women with sickle cell disease in Mulago National Referral Hospital face challenges when they become pregnant and they receive the same care as all other high risk pregnant women who come to the hospital. This study explored the lived experiences of pregnancy among women with sickle cell disease receiving care at Mulago National Referral Hospital.Methods This was a qualitative phenomenological study conducted on 15 participants who were women with sickle cell disease with the experience of pregnancy. In-depth audio recorded interviews were conducted to collect data from women who were pregnant at time of study or had ever been pregnant aged 16 to 38 years of age with sickle cell disease. Recorded data was transcribed and analyzed using content thematic approach.Results This study revealed that pregnant women with sickle cell disease faced both negative and positive health care experiences and individual lived experiences of pregnancy. The few positive individual lived experiences were joy of motherhood and giving birth to child free of sickle cell disease whereas the negative individual lived experiences reported were recurrent painful crises, pregnancy loss, premature delivery, stigma and discouragement, relationship discord and desertion by spouse. There were few positive healthcare experiences reported in this study which included: dedicated care and support from health workers, referral to specialist services, support from their male partners and the negative healthcare experiences reported were delay to get medical assistance, informal hospital charges, unsatisfactory care, and advocacy for caesarian section Vs normal delivery.Conclusion Pregnant women with sickle cell disease lived with great expectation and in fear of being further weakened by the disease. Their experiences were in general negative at both individual, social and health system levels.

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Impact of a paediatric-adult care transition programme on the health status of patients with sickle cell disease: study protocol for a randomised controlled trial (the DREPADO trial)

10.21203/rs.2.16608/v1 ◽

2019 ◽

Author(s):

Delphine Hoegy ◽

Nathalie Bleyzac ◽

Alexandra Gauthier-Vasserot ◽

Giovanna Cannas ◽

Angélique Denis ◽

...

Keyword(s):

Sickle Cell Disease ◽

Sickle Cell ◽

Coping Skills ◽

Morbidity And Mortality ◽

Care Transition ◽

Cell Disease ◽

Adult Care ◽

Biopsychosocial Approach ◽

Adult Transition ◽

And Coping

Abstract Background: Thanks to the advancements in medical care, a majority of sickle cell disease patients worldwide live beyond 18 years of age, and therefore patients initially followed in paediatric departments are then transferred to adult departments. This paediatric-adult care transition is a period with an increased risk of discontinuity of care and so morbidity and mortality. During this period, the patient will have to manage new interlocutors and places of care, and personal issues related to the period of adolescence. To take into consideration all these aspects, an interesting approach is to refer to the patient as a whole system as presented in biopsychosocial approach. The aim of this trial is to evaluate the impact of the proposed biopsychosocial paediatric-adult transition programme. Methods: The DREPADO study is a multicentre randomised control trial comparing a control group ( Arm A ) versus an interventional group with paediatric-adult transition programme based on a biopsychosocial approach ( Arm B ). To be included, patients should suffer of SS, SC or Sβ-form of sickle cell disease and aged between 16 and 17 years. The randomisation in a 1:1 ratio assigns the Arm A or B . The primary outcome is the number of hospital admissions and emergency in the index hospital for complications, in the 2-years after the first consultation in the adult department of care. Secondary outcomes consider the quality of life, but also included coping skills such as self-efficacy feeling and disease knowledge. To provide patient and parent knowledge and coping skills, the transition program is composed of 3 axis : educational, psychological and social, conducted in individual and group.Discussion: By providing self-care knowledge and coping skills related to SCD and therapeutics, helping patient's empowerment related to pain management and emotions and facilitating the relationship to oneself, others and care in the Arm B of DREPADO study, we believe that the morbidity and mortality of patients with SCD may be reduced after the proposed paediatric-adult transition programme. Trial registration: ClinicalTrials.gov, ID: NCT03786549; registered on 17 th December 2018; https://clinicaltrials.gov/.

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