The social impact of cancer on people of south Asian origin: staff and patient interview studies


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Naheed Hanif, Nimarta Dharni, Chris Bradley, Karl Atkin, Sangeeta Chattoo, Galina Velikova, Dan Stark, Penny Wright

Bradford Institute for Health Research, Bradford Royal Infirmary, Bradford Teaching Hospitals Foundation Trust, UK

Abstract

Background

Social Difficulties Inventory (SDI), a questionnaire designed to measure social difficulties in cancer patients, was developed and evaluated from almost exclusively white British cancer patients. South Asian (SA) patients/carers, especially non English speakers, may experience other difficulties related to accessible information and referrals to support services.

Aim

Evaluate translated versions of the SDI (Punjabi, Hindi, Urdu) and investigate the social impact of cancer on people of SA origin.

Method

44 SA cancer patients (68% participation) completed translated versions of the SDI followed by an interview to evaluate the accuracy/relevance of the translated SDIs. Knowledge and experience of support services and patient expectations were also explored. 5 doctors/nurses were interviewed to examine how SA patient SDI item responses were interpreted, reasons for action/non-action and training requirements.

Results

Ongoing framework analysis suggests that SA cancer patients generally:

o Receive translations of the SDI well and do not recommend changes.

o Accept the SDI as a relevant and useful tool for screening social difficulties.

o Welcome discussing social difficulties with healthcare professionals (HCP)

o Deal with social difficulties themselves as seen as their responsibility.

o Acknowledge that when there is a lack of personal support or a worsening of difficulties, outside support is wanted/accepted.

o Distinguish language barriers as hindering communication between patients and HCPs and limiting understanding and/or access to support.

Conclusion

Background

Social Difficulties Inventory (SDI), a questionnaire designed to measure social difficulties in cancer patients, was developed and evaluated from almost exclusively white British cancer patients. South Asian (SA) patients/carers, especially non English speakers, may experience other difficulties related to accessible information and referrals to support services.

Aim

Evaluate translated versions of the SDI (Punjabi, Hindi, Urdu) and investigate the social impact of cancer on people of SA origin.

Method

44 SA cancer patients (68% participation) completed translated versions of the SDI followed by an interview to evaluate the accuracy/relevance of the translated SDIs. Knowledge and experience of support services and patient expectations were also explored. 5 doctors/nurses were interviewed to examine how SA patient SDI item responses were interpreted, reasons for action/non-action and training requirements.

Results

Ongoing framework analysis suggests that SA cancer patients generally:

o Receive translations of the SDI well and do not recommend changes.

o Accept the SDI as a relevant and useful tool for screening social difficulties.

o Welcome discussing social difficulties with healthcare professionals (HCP)

o Deal with social difficulties themselves as seen as their responsibility.

o Acknowledge that when there is a lack of personal support or a worsening of difficulties, outside support is wanted/accepted.

o Distinguish language barriers as hindering communication between patients and HCPs and limiting understanding and/or access to support.

Conclusion

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