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Abstract
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.
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Introduction
One in eight UK residents aged over 64 is living with or beyond cancer and the incidence is increasing.1 2 Cancer patients experience a variety of physical, psychosocial and informant needs with some services not meeting these needs or services being poorly integrated. Many patients are unaware of available services.3 Providing support for cancer survivors is a challenge.4
The National Cancer Survivorship Initiative (NCSI) recommends a shift towards assessment, information provision, personalised care planning and support for self-management including assessment within the social domain.5 For routine assessment, sign-posting and self-management to be integrated into cancer care, the system must be perceived as being simple and compatible with existing practices.6 Assessment within the social domain has not been common and may be challenging to implement. One systematic and cost effective approach may be to introduce a screening questionnaire. We have developed and evaluated the Social Difficulties Inventory (SDI-21), a 21-item questionnaire covering issues of common concern to cancer patients.7,–,10 In addition, we have investigated the roles and responsibilities of staff and patients in relation to the detection of and support for social difficulties and from this developed guidance on the assessment and management of social difficulties.11 This guidance, a hierarchy of intervention, recommends nurses take a lead in the assessment and management of difficulties reported within the social domain, with five levels of intervention recommended from simple acknowledgment to encouraging mobilisation of commonly available resources, provision of information and supportive intervention through to level five, referral for specialist help.
The introduction of routine patient centred assessment offers healthcare professionals a valuable opportunity to systematically understand and respond to patients' needs. However, assessment alone, even with valid, reliable and culturally acceptable questionnaires in languages relevant to the patient population, will not automatically lead to improved patient outcomes, just as providing a service does not ensure it is accessible.12 Implementation and ultimately adoption will require a change in approach by patients, their healthcare providers and the system which delivers the care, as described in the ‘whole system informing self-management engagement’ (WISE) model.13 Self-assessment, care planning and sign-posting may be particularly difficult to implement for minorities with different languages and cultures. There is concern that the National Health Service (NHS) is not responding to the different needs of a multicultural society.14 Surveys of patients with cancer have shown that black and minority ethnic (BME) groups, in general, report a worse experience of treatment and care.4 Evidence suggests there may be a gulf in terms of knowledge, awareness and access to cancer services among people from South Asian (SA) communities.15 Patients with limited English, recent migrants to the UK and those with no family advocate are particularly vulnerable.16 Poor English and lack of knowledge of services are barriers to obtaining advice on welfare benefits for older people of SA origin, compounded by poor health and difficulties in completing forms.17 Patients' perception of the limited understanding by staff of religious and cultural needs adds to problems of communication and comprehension.18 In Australia, self-management involving minority ethnic groups has demonstrated some benefits.19
In the UK, the incidence of most cancers in BME adults is less than that of white British (WB) adults.20 However, migrant incidence rates tend to converge with those of their host country over time.21 There is a large BME population in West Yorkshire, with almost a fifth of the population in Bradford being of Pakistani, Indian or Bangladeshi origin and 10% of the population having been born outside the European Union.22 To develop an inclusive system of assessment, self-management and support, consideration must be given to patients from BME communities. As a first step to providing a more equitable assessment system, we have translated the SDI-21 into three SA languages commonly spoken in our community (Punjabi, Urdu and Hindi).23 In this study, using both quantitative and qualitative methodology, we have investigated the experiences and expectations of patients of SA origin in relation to the management of social difficulties with the aim of informing inclusive implementation of the NCSI vision.
The objectives were to evaluate, in a group of UK cancer patients of SA origin, including investigation of language and cultural effects, the following:
▶ The acceptability of introducing assessment of social difficulties in everyday practice for patients
▶ The range, severity and content of the reported social difficulties
▶ The management of these problems, including patient self-management and perceived communication, information and support from staff.
Methods
Participants and setting
Following approval from the local ethics committee, patients were recruited from medical and clinical oncology and haematology outpatient clinics from two cancer units and one cancer centre to a cross-sectional patient interview study. Patient eligibility included being of Indian or Pakistani origin, 3 months post diagnosis, physically and mentally capable of participating in an interview and attending outpatient clinic appointments at least every 2 months. Two researchers of SA origin fluent in English, Punjabi and Hindi (ND) and English, Urdu and Punjabi (NH) conducted the study. Participants were purposively selected by age, gender and stage of disease to ensure wide patient representation.
Information sheets were available in English, Hindi, Punjabi, Urdu and Mirpuri Punjabi (translated into Roman English script as there is no written form). Researchers read out the information sheet for non-readers. Following written or verbal consent (signed confirmation was given by the patient's accompanying family member), interviews were arranged, usually at the patient's home. Reasons for refusal were recorded, where known.
Procedure
Patients completed a socio-demographic form, the SDI-21 and were interviewed. The SDI-21 is a well validated and reliable social difficulties questionnaire. Rasch analysis demonstrated that 16 of the items could be summed to form an interval scale of social distress (SD-16).10 24 A score ≥10/44 indicates social distress warranting discussion with healthcare staff.8 The SDI-21 comprises three subscales, derived from factor analysis of the SD-16 scale and five single items7 (figure 1).
Level of social difficulties reported using the Social Difficulties Inventory (SDI-21).
Patient responses from the SDI-21 were used as the basis of the semi-structured interview in which the questionnaire responses were verified and discussed. Additional discussion topics are displayed in box 1. Interviews were audio-recorded, translated and transcribed using an external translation service. Transcriptions were checked against their original interview recordings for translational and contextual accuracy.
Box 1 Patient interview schedule
For all reported difficulties
Explore nature of difficulty and what patients thought and hoped might happen
Discuss the impact of being given the chance to talk about their difficulties had in terms of
Whether being asked about their difficulties altered their thoughts about them
How difficult it had been to deal with each issue
What type of support if any would help sort things out
Patients' perception of whose responsibility it was to deal with their social difficulties
Who would be the best person to discuss their social difficulties with
Whether being asked about their difficulty might alter the discussion they had with the healthcare professionals in clinic
Any other comments about the use of the SDI-21 in clinic and impact on expectations of themselves and others
Analysis
Mixed methods were employed to report:
▶ Participants (descriptive statistics)
▶ Acceptability (descriptive statistics and framework analysis)
▶ Social difficulties experienced (descriptive statistics, t tests and one-way ANOVA (application of a Bonferroni adjustment for multiple comparisons), framework analysis)
▶ Management of social difficulties (framework analysis).
Statistical analyses were undertaken using SPSS 16.0. Interview data were analysed using framework analysis which employs a deductive approach informed by a priori reasoning in five stages: familiarisation, identifying a thematic framework, indexing, charting and mapping the data prior to interpretation.25 26 The a priori concepts were derived from emergent themes from a study of the management of social difficulties by cancer patients and staff in a mainly WB sample and included: actions taken by staff and patients in response to difficulties, reasons for taking or not taking action and who took or had responsibility for taking action.11 Transcripts were imported into Nvivo 7 (QSR International, Doncaster, Victoria, Australia) and coded by seven researchers working individually and in alternating pairs (blind to one another's coding) to improve the reliability of coded data and ensure consistency. Weekly consensus meetings were held. ND and NH undertook charting and interpretation. A constant comparative approach was followed comparing young, middle-aged and older patients, males and females, level of educational attainment and those interviewed in English or in a SA language.
Results
Participants
Sixty of 85 patients approached consented (71%). Reasons for non-consent included poor health, lack of interest and twice, refusal by accompanying family members. Five patients were unable to complete the interviews: three withdrew due to personal commitments, one withdrew due to deteriorating health and one died prior to interview. The complete dataset comprised 55 patients ranging between 18 and 80 years of age (mean 49.7, SD 15.88) (table 1).
Summary of socio-demographic details of interviewed patients
Acceptability
Almost half of the participants completed the SDI-21 in English, although this was the sole primary language of only three participants. English completers were younger than non-English completers (table 1). Participants who spoke the Mirpuri dialect completed the SDI-21 (Urdu) which was read aloud to them.
All reported they would welcome assessment of their social difficulties using a tool such as the SDI-21. More specifically, this type of patient led assessment was perceived by patients as a means of receiving support for their difficulties by enabling staff to pick up on problems. The breadth of issues covered was perceived as relevant to SA cancer patients. Those completing the translated versions of the SDI-21 commented on the value of being provided with an accessible assessment tool to highlight difficulties.
“Everyone should fill it in, the patients. It makes it easy for others and for you in thinking and is also easy for the doctor to see what problems the patient is having. Sometimes patients do not tell their problems” (male, 47 years, follicular lymphoma, Urdu).
Social difficulties experienced
All SDI-21 items were endorsed at all levels (figure 1).
Subscale scores and some examples of patient experience are shown in figure 2. Everyday living items were heavily endorsed by participants with the item ‘domestic chores’ contributing the most (40%, ‘very much difficulty’). Difficulties described concerning care of dependents in the main involved younger children but other dependents were also discussed. Problems with ‘money matters’ were less common and included difficulties with claiming benefits, paying bills and making decisions about priorities. Within the ‘self and others’ subscale, difficulties with isolation and body image were commonplace. Discussion of body image mainly concerned hair loss. Some participants described issues in relation to their culture and religion.
SDI-21 Examples of the patient experience by the Social Difficulties Inventory (SDI-21) subscales and single items.
Thirty-two of the 55 patients (58%) had an SD-16 score ≥10, indicating significant social distress (mean 13.1, SD 9.21). No differences were found in SD-16 or subscale scores by age, gender or language of interview (English vs non-English) following a Bonferroni adjustment. Four patients, who were disease free or in remission, reported no SDI-21 difficulties.
Problems with sexual difficulties included loss of libido, fatigue, pain and erectile dysfunction. Eight participants endorsed the ‘plans to have a family’ item, mainly concerning treatment induced infertility. Problems with where people lived were minor. Over half recorded quite a bit or very much difficulty with plans to travel and or take a holiday. The plans of participants travelling to India (n=5) and Pakistan (n=13) had changed due to the illness or treatment, although not all of these people had endorsed holiday difficulties on the SDI-21. Some participants had little or no information about travel insurance.
Framework analysis established that patients with advanced disease, those receiving chemotherapy, participants with little or no English, those living alone and those with young children described considerable difficulties.
Management of social difficulties
Patients generally self-managed their difficulties with help from family and friends, as this was perceived as their own responsibility and not appropriate for discussion with healthcare staff (box 2:1). External support was rarely sought for personal care, domestic chores or emotional distress. Although most patients were well supported by their own networks, nearly all acknowledged they would have benefited from informational and practical support. They stated this was particularly important for those with no family support (box 2:2).
Box 2 Patient experience of self-management
“I did not consider it to be appropriate to ask them as it is not their job. My understanding was that their job is to treat me and it is not their responsibility to sort out my problems”
(Male, 47 years, follicular lymphoma, Urdu)
“… if I didn't have anyone at home, maybe I would've said, you know, how am I gonna cope at home because I’ve got nobody there, cos I obviously knew I had people to support me so I didn't bother asking…”
(Male, 46 years, head and neck cancer, English)
Sometimes patients would have preferred to discuss difficulties with a health professional.
Almost all reported willingness to discuss their difficulties, but only if the discussion was initiated by the health professional, especially in relation to sexual problems (box 3:1). Patients were more likely to discuss sexual difficulties in relation to fertility and family planning, thus legitimising the reason for discussion (box 3:2). Most patients reported their wider social situation was rarely talked about during consultations (box 3:3).
Box 3 Professional support
“I felt as though they should have provided me a helper like a nurse who could've provided some reassurance, tell me about my difficulties and what would happen with those, tell me it will be a little hard and these things sometimes you can't discuss with your close ones, but if it is an outsider you can talk to them as to what difficulties we are facing internally.”
(Female, 51 years, low grade pelvic malignancy, Urdu)
“Yes I did ask about this… obviously I want to make a family more… I did ask them and they did tell me you, what I need to do.”
(Female, 37 years, ovarian cancer, English)
“… before the operation I saw the surgeon maybe a couple of times, and all he said was he was going to operate on me on such and such date… and nothing else was said, I mean I basically had no support from the hospital you know, all they said was, get your family involved… but, you know, what if I didn't have a family?”
(Male, 46 years, head and neck cancer, English)
Patient reasons for not raising concerns included being supported at home, such issues being outside the remit of doctors and nurses and, for the majority, a lack of knowledge about available support (box 4:1). The consultation environment, the perceived unwillingness of clinicians and time constraints appeared to contribute to a lack of discussion. A lack of focus in the enquiries made during a consultation also emerged (box 4:2). Several patients stated they would welcome discussion of difficulties but only if help was provided or practical solutions suggested (box 4:3). There was variation in who patients thought was the most appropriate health professional to discuss problems with (nurse, consultant, general practitioner). A few reported feeling more comfortable discussing their social difficulties with nurses, who were generally perceived to have more time and a wider remit (box 4:4). Several patients highlighted the need for a specific health professional dedicated to assessing and providing support for the types of social difficulties included in the SDI-21. Most patients felt it was not necessarily the doctor's responsibility to provide support, but they thought doctors should be able to refer patients to the appropriate service (box 4:5).
Box 4 Getting help
“They did never ask, so we thought perhaps it is not their problem… I don't know what help we could've got, we didn't know.”
(Female, 57 years, metastatic breast cancer, Hindi)
“… they ask you how you're doing, but they don't really listen to the answer… maybe if they say… “and everything else is okay?”. You know… it's not an open question but also its like, EVERYTHING ELSE, so one of my concerns is… what are you asking me about, not specific enough to, in that sort of very, short moment to be able to think of any of this stuff that might've been on your mind…”
(Female, 31 years, ovarian cancer, English)
“It's not just somebody who you want to ask a few questions to, you need practical help, so somebody who can actually do that.”
(Male, 54 years, metastatic head and neck, English)
“The consultants are busy, there's a stage before that where the nurses meet you, they look at your notes, they weigh you and what have you, at that stage it's for them really to look at… is everything okay, do you need any support, do you want to discuss anything?”
(Male, 39 years, brain tumour, English)
“No, no. They are only responsible for health. They are not responsible for your financial situation. They might be able to help that you have this difficulty and they can tell and write to people who could come and see you. They can do this.”
(Male, 61 years, advanced chronic lymphocytic leukaemia, Urdu)
Language and cultural challenges
Younger patients, generally English speakers, were more likely to seek help and report difficulties. There was a general consensus among patients who spoke English that non-English speaking patients probably did not receive the level of information they received and would struggle to negotiate and access the appropriate support (box 5:1). Older patients and those unable to speak English lacked awareness of the types of support services available, with language barriers hindering direct communication with healthcare staff as well as limiting access to support (box 5:2). Some patients felt communication with health professionals was constrained by cultural differences, with one patient not discussing disruption of her religious practice as a result of her stoma, specifically wudu (Islamic ablution for purposes of prayer), as she felt the English doctor would not understand (box 5:3). A few of the Muslim female patients had a strong preference for examination by a female doctor (box 5:4). The sense of patients' helplessness and isolation from the health staff responsible for their care due to language barriers, also appeared to influence perceptions of the healthcare system and neglect of older patients. One referred to problems he was experiencing with personal care for which he relied on help from his young grandson (box 5:5). Patients who were not fluent in English managed their difficulties within their personal networks, relied on informational support from their SA general practitioner, if they had one, and several sought independent assistance to manage welfare and benefits issues through local community resource centres or legal professionals (box 5:6).
Box 5 Languages and cultural challenges
“I did ask questions and, you know, and maybe other people who don't know English, they don't ask that many questions, they just get what they're given, and that's it, on their way, but I kept asking…”
(Female, 35 years, disease free Hodgkin's lymphoma, English)
“I don't know what the doctor is saying. If I understand anything, I answer. If I don't understand, I don't know what to say. We have this difficulty.”
(Male, 76 years, prostate cancer, Urdu)
“They are English and don't know that I read Namaz or do other things… they don't know about such matters.”
(Female, 75 years, ovarian cancer, Punjabi)
“We are Muslims and feel uneasy with a male staff. Even if you are not a Muslim, a woman is a woman. I felt embarrassed and want a female to check me. Then there is no problem.”
(Female, 54 years, breast cancer, Mirpuri Punjabi)
“I think they don't pay attention, they don't have departments which pay attention to or care about old people.”
(Male, 80 years, advanced follicular lymphoma, Urdu)
“I contacted the solicitor myself because I could not go, they asked me to fill in so many forms and you have to go several times, I couldn't do it, I can't fill the forms in English at home. I did not go to schools here, therefore I appointed a solicitor and she sorted everything out for me.”
(Female, 42 years, metastatic breast cancer, Urdu)
Discussion
In this exploratory study, SA participants stated they would welcome routine assessment of social difficulties as part of their cancer care. They reported high levels of social distress, with 58% scoring ≥10 on SD-16. The majority self-managed their social difficulties with little reference to the clinical team, although discussion initiated by healthcare professionals would have been welcomed by patients. Consistent with previous research, the SA patients in this study lacked information and were unaware of the available support, especially when language was a barrier.15 Younger patients, those with advanced illness and those with no extended family to support them, felt particularly isolated and experienced the most difficulties.
A strength of the study was the inclusive approach taken to consent, resulting in high participation and a good sample size for qualitative research. The socio-demographic profile of the local population led to the decision to translate the SDI-21 into three SA languages only. A number of Gujarati speaking patients were included as they were interviewed in Hindi or English. The research assistants were fluent in three languages and some participants were also able to converse in more than one language. Therefore language was not a barrier to participation. In areas where BME groups make up a sizeable proportion of the population, investment in staff with linguistic abilities and cultural knowledge may encourage patient access to support services and inclusion in research studies.
A limitation of the study was the lack of a non-SA comparison group within the study and having to rely on earlier studies of WB patients as a comparative group. The mean SD-16 score from this group of BME patients is higher than found in a previous ‘all-comers’ study (mean 7.9, SD 6.34)8 and particularly in the ‘everyday living’ and ‘self and others’ subscales,7 suggesting patients of SA origin may be in greater need of assessment and support than WB patients. Despite this higher level of reported social distress, many patients indicated a preference to cope with difficulties independently with information, access appropriate supportive care services and referral when required appreciated, as found with WB cancer patients.11
Recommendations for practice
Although the severity of social difficulties reported is relatively high, our interviews suggest the range of difficulties experienced by SA cancer patients may be similar to those experienced by other cancer patients, as demonstrated through relevance of the SDI-21 to this sample. Participants said they wanted to discuss their social difficulties but varied in their ability to voice concerns and tended to wait for healthcare professionals to take the lead. Staff may be reluctant to initiate discussion concerning some social concerns, as found in the WB study, and this may be exacerbated with patients of SA origin due to concerns of inadvertently making cultural blunders. SA cancer patients may face additional inequalities to accessing information and appropriate supportive care services due, in part, to lack of spoken English. This poses a serious challenge to the race relations legislation and NHS initiatives such as the NCSI that prioritise delivery of an equitable and accessible service to all individuals regardless of gender, culture, religion and ethnic background.12 However, as almost half of the participants opted to be interviewed in English and attendance at a course in ‘English for speakers of other languages’ is now compulsory for non-English speaking migrants seeking citizenship, this hurdle may be overcome in future years.27
Decisions will need to be made within healthcare teams about who is best placed to undertake assessment of social difficulties in SA patients. In this study patients thought outpatient nurses in secondary/tertiary care or possibly their own SA general practitioner, if they had one, would be the best person to undertake this task. This endorses the findings of the WB study in which patients stated outpatient nurses were the most appropriate member of the team to assess patients within the social domain.11 Implementation is most likely to be successful where roles and responsibilities are compatible with current practice and when the process is efficient and easy to use.6 This would include using standard assessment tools such as the SDI-21 administered using simple technologies such as a touchscreen allowing for automated scoring to minimise staff burden and speed up the assessment process. Guidance on score interpretation and access to supportive care information, sign-posting and referral pathways would further aid the process. To this end a ‘hierarchy of intervention’ has been developed from the previous work with WB patients11 and an ongoing randomised pilot study of assessment using the SDI-21 (English) using this hierarchy with associated information for use by trained outpatient nurses will provide detailed information on feasibility. In England and Wales there is a peer review requirement for holistic common assessment (HCA) to be undertaken at different time points across the patient pathway, including within the social domain.28 This pilot work will inform implementation of HCA.
Services should be equitable for all patients irrespective of their cultural background, spoken language, literacy or other characteristics. This requires provision of bilingual staff, interpreters, hospital signage in multiple languages, and translated documents such as assessment tools, consent forms, medical information and information leaflets. Sign-posting and referral on to both hospital and locally accessible voluntary/community supportive care services in languages relevant to the local population will play an important part in an equitable service. Greater professional and service-wide reflexivity is needed regarding ethnic stereotypes, including notions such as ‘taking care of their own’ which undermine the needs of BME users who require similar kinds of, and at times greater, support in relation to illness as well as family based care, as their white counterparts.29 Additional barriers apart from language may exist and these may be shared across cancer patients in general, including poverty, poor literacy and social exclusion. This is particularly important as ethnicity may not always be the reason behind disadvantage.30
Conclusions
The translation of the SDI-21 into three SA languages is the first stage in developing an equitable system for assessment, information provision, personalised care planning and support for self-management within the social domain in cancer care. Patients of SA origin would welcome the opportunity to complete this assessment as part of routine patient care as long as reported difficulties were acted upon by healthcare staff. Results from the ongoing pilot study will inform whether or not implementation of HCA within the social domain is feasible for patients who speak English. If the outcome is positive, then the next step would be to extend the evaluation to patients who could complete the assessment in Urdu, Punjabi or Hindi.
Acknowledgments
The authors thank all the patients who participated, staff at the three recruitment sites for their help during recruitment and Emma Ingleson, Sally Taylor, Alan Liu and Laura Bingham from the Psychosocial Oncology and Clinical Practice Research Group for their help with data analysis. Thanks to Sangeeta Chattoo (grant holder) and David Armstrong for their comments on earlier versions of the manuscript and Karl Atkin (grant holder) for advice on cultural issues.
References
Footnotes
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Funding This paper presents independent research commissioned by the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (grant reference number PB-PG-0706–10284). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. Funding for NH was from Bradford Teaching Hospitals NHS Foundation Trust Research and Development Unit.
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Competing interests None.
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Ethics approval This study was approved by Bradford Research Ethics Committee (reference 07/Q1202/43) and NHS Research and Development.