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Table 35Summary of all included studies for identifying information and support needs of patients and their carers during an acute painful sickle cell episode

ReferenceStudy design and aimLocationPopulationRecruitment/ sample collectionLimitationsKey themes
Pain managementCommunicationInformation at dischargePatient support needs
Qualitative designs
Alleyne and Thomas (1994)Design: qualitative study using semi- structured interviews
Aim: To examine the patients’ experience of pain management and the viewpoint of nurses providing care
UKAdults
10 patients
8 female, 2 male
All African- Caribbean ethnicity
Patients were recruited from adult sickle cell support groups held at the hospital
All nurses were from the haematology ward
Lack of reflexivity in reporting the role of the researcher
Unclear how reliable data assessment was
Data analysis could have been more detailed
Pain monitoring
Pain management methods
Anxieties
Involvement and control
Mutual exchange
No information related to this key theme was discussed in the studyNo information related to this key theme was discussed in the study
Booker et al. (2006)Design: qualitative study using focus groups
Aim: to understand the barriers faced by patients in managing pain
UKAdults
10 patients
4 female, 6 male; mean age 32.0 years, range 22–53 years; 8 African- Caribbean, 1 African, 1 Portuguese
Patients were randomly selected from a list of previous inpatients
Purposive sampling by quota allocation ensured a balance of ages and genders
Full and clear reporting provides a thorough outline of context and findings of researchPain management methods
Anxieties
Conflict
Mutual exchange
No information related to this key theme was discussed in the studyPsychosocial support
Mixed designs
Johnson (2003)Design: mixed design using focus group and questionnaire
Aim: To collect data about patients’ perceptions of using patient- controlled analgesia
UKAdults
40 patients
22 female, 18 male (age range 18–49 years); ethnicity not reported
All adult patients with sickle cell disease admitted during the study period who were eligible to complete the questionnaire.
Patients taking part in the focus group were identified through the modal age bracket.
Lack of reflexivity in reporting the role of the researcher
Unclear how reliable data assessment was
Considerations for context bias were not reported
The paper could have provided excerpts from focus group
Pain management methodsInvolvement and control
Conflict
Mutual exchange
No information related to this key theme was discussed in the studyNo information related to this key theme was discussed in the study
Maxwell et al. (1999), Maxwell and Bevan (1998)Design: mixed design using qualitative interview and questionnaire
Aim: To examine patients’ experiences of ward and services
UKAdults
57 patients
32 female, 25 male; age range 20–60 years, mean age 34 years; 29 West African, 26 African- Caribbean, 2 other African
Theoretical sampling was used to recruit patients with sickle cell disease in the Greater London areaFull and clear reporting providing a thorough overview of context and findingsPain monitoring
Anxieties
Involvement and control
Conflict
Mutual exchange
Medication advice
Personal needs
Psychosocial support
Harris et al. (2008)Design: mixed design using qualitative interview, focus group and structured questionnaire
Aim: to compare experiences of pain and pain management in patients with different frequencies of hospital admissions
UKAdults
27 patients
12 female (mean age 30 years, range 18–60 years);
15 male (mean age 28 years, range 21–35 years);
All patients were African or African- Caribbean
Patients were previous inpatients of the haematology ward
Only patients admitted in the previous
12 months were eligible
Not sure how reliable the methods were: no triangulation
Considerations for context bias were not reported
Findings could have been more thorough
Ethical considerations were not reported
Pain management methods
Anxieties
Conflict
Mutual exchange
No information related to this key theme was discussed in the studyPsychosocial support
Mitchell et al. (2007)Design: mixed design using focus group and questionnaire
Aim: to assess how healthcare services can be optimised to improve utilisation by patients and their families
USAParents or guardians (children)
53 participants representing 48 children with sickle cell disease

Parents and guardians:
46 female, 6 male
Children:
24 female, 24 male; mean age 10.66 years
All participants were African- American, except for one white adoptive parent
Participants were recruited via letters, telephone calls and clinic visits
Only parents or guardians who were living with the child and had been the primary caregiver for at least 12 months were eligible for inclusion
Findings could have been more thorough
Ethical considerations were not reported in adequate detail
No information related to this key theme was discussed in the studyInvolvement and control
Mutual exchange
Medication adviceNo information related to this key theme was discussed in the study
Questionnaire/survey designs
Waters and Thomas (1995)Design: qualitative questionnaire
Aim: to identify the perceptions and expectations of pain management in patients and nurses
UKAdults
9 patients
3 female, 6 male; mean age 24.3 years; range 17–28 years)
17 nurses (12 qualified nurses, 5 student nurses); nurses’ demographics were not reported
Patients with sickle cell disease admitted to a general medical ward
All nurses were from the haematology ward
Lack of reflexivity in reporting the role of the researcher.
Considerations for context bias were not reported
Unclear about sampling strategy
Data analysis methods were not reported
Ethical considerations were not reported
Pain monitoring
Pain management methods
Anxieties
Involvement and controlNo information related to this key theme was discussed in the studyClinical support
Psychosocial support
Lattimer et al. (2010)Design: structured interviews presented in a survey design
Aim: to measure the experience in hospital of patients compared with a national sample
USAAdults
45 patients 25 female, 20 male; mean age
31.2 years, range 20–59 years
Patients were recruited from the emergency department and adult sickle cell and haematology outpatient clinics
Participants from this cohort were interviewed each time they were admitted for a vaso-occlusive crisis
Lack of reflexivity in reporting the role of the researcher
Considerations for context bias were not reported
Pain management methodsInvolvement and control
Mutual exchange
Personal needsPsychosocial support
Murray and May (1988)Design: structured questionnaire
Aim: to collect information from patients on aspects of pain episodes
UKMixed population (adults and children)
102 patients
61 female, 41 male; age range 11–49 years)
All patients were attending haematology clinics
400 questionnaires were distributed to the clinics
Response rate is unknown (number of questionnaires given to patients is unknown)
Methods of administration and distribution were inadequately reported
Unclear if an existing tool was used or a new tool was developed
Unclear how potential participants were identified
Ethical considerations were not reported
Pain management methods
Anxieties
Mutual exchangeNo information related to this key theme was discussed in the studyNo information related to this key theme was discussed in the study

From: 2, Evidence review and recommendations

Cover of Sickle Cell Acute Painful Episode
Sickle Cell Acute Painful Episode: Management of an Acute Painful Sickle Cell Episode in Hospital.
NICE Clinical Guidelines, No. 143.
Centre for Clinical Practice at NICE (UK).
Copyright © 2012, National Institute for Health and Clinical Excellence.

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