Managing social difficulties: roles and responsibilities of patients and staff.

BACKGROUND: Implementation of guidance on assessment and management of psychosocial and supportive-care problems or needs will be successful only if consideration is given to existing skills, experience and expectations of staff and patients. This study examines the roles and responsibilities of staff, patients and families in relation to management of social difficulties and proposes a pathway for response. METHODS: A qualitative study was performed using staff and patient interviews. Seventeen doctors and 16 nurses were interviewed using patient scenarios and a support service questionnaire. Patients (n = 41) completed a screening questionnaire (the Social Difficulties Inventory) and were interviewed. Interviews were audio-recorded, transcribed and subjected to a Framework analysis. Analysis examined (1) actions taken by staff and patients in response to social difficulties, (2) reasons given for action taken and (3) perceptions of staff and patients of who was responsible for taking action. RESULTS: Staff were confident concerning clinically related issues (i.e. mobility) but more hesitant concerning difficulties related to money, work and family concerns. Patients liked to cope with problems on their own where possible, would have liked information or support from staff but were uncertain how to access this. Results led to development of a hierarchy of interventions in response to detected social difficulties. DISCUSSION: For routine assessment of social difficulties, patients, nurses and doctors will have to work collaboratively, with nurses taking a lead in discussion. For specific clinically related problems doctors would play a more primary role.

Translation of the Social Difficulties Inventory (SDI-21) into three South Asian languages and preliminary evaluation of SDI-21(Urdu).

PURPOSE: In the United Kingdom, cross-cultural adaptation of questionnaires would allow for inclusivity in assessment in cancer clinics for non-English speakers. The aim was to translate the Social Difficulties Inventory (SDI-21) into Urdu, Punjabi and Hindi and undertake preliminary evaluation of translated versions. METHODS: The study comprised three stages: (1) translation/back translation and evaluation of cultural equivalence of the SDI-21, (2) south Asian (SA) patient evaluation of SDI-21 translations and (3) evaluation using Rasch analysis comparing English and Urdu SDI-21 from data pooled from this and three other studies. RESULTS: Forward/backward translation resulted in minor amendments particularly in forward translation of SDI-21(Hindi). The majority of the 55 patients interviewed found the SDI-21 acceptable and clear, resulting in no amendments (all versions). Rasch analysis demonstrated good fit. Differential item functioning (DIF) was found for one item, in the comparison of white English (WE)- and SA Urdu-speaking groups. Detailed DIF analysis comparing self-completion and read-aloud administration by language group demonstrated this DIF only held for the comparison between SA English speakers (self-completion) and SA Urdu (read out). CONCLUSIONS: Translated versions are culturally and linguistically acceptable. The SDI-21 (Urdu) performs similarly to the English version when self-completed.

The social difficulties of cancer patients of South Asian Indian and Pakistani origin: a cross-sectional questionnaire and interview study.

OBJECTIVES: To evaluate, in a sample of patients of South Asian (SA) origin, the acceptability of introducing assessment of social difficulties in everyday practice, examine the range and severity of reported social difficulties and inquire about their management. DESIGN: A cross-sectional study in which participants completed the Social Difficulties Inventory (SDI-21) in English, Urdu, Punjabi or Hindi followed by a semi-structured interview. PARTICIPANTS: Participants comprised 26 men and 29 women of SA origin ranging between 18 and 80 years of age. The commonest primary languages were Urdu (n=17) and Punjabi (n=17). English was the primary language of three participants. A range of cancer diagnoses and stages of disease were represented. SETTING: Patients were recruited from outpatient haematology and oncology clinics in Bradford, Airedale and Leeds hospitals. RESULTS: SA cancer patients welcomed routine assessment of social difficulties as part of their cancer care. They reported higher levels of social distress than found in earlier studies of white British patients. The majority managed their social difficulties themselves with little discussion with the clinical team, although, at times, this would have been welcomed. SA patients lacked information and were unaware of the support available to them, especially when language was a barrier. CONCLUSIONS: Introduction of routine assessment of social difficulties into cancer care will require not only relevant and accessible screening tools such as the SDI-21, but also staff trained to respond to the difficulties disclosed, with knowledge of information sources and supportive care services when patients request these.