This is Me: Evaluation of a boardgame to promote social engagement, wellbeing and agency in people with dementia through mindful life-storytelling.

Receiving a dementia diagnosis is a difficult experience for most people and often affects their wellbeing negatively. To support people's wellbeing, in a therapeutic context, life-storytelling, reminiscence and mindfulness are used with people with dementia. In an everyday context, traditional games are used as a resource for stimulating memory, cognition and social activity. While an increasing number of creative strategies are available to support people with dementia, the area of board games design and their effect on wellbeing is underexplored. This paper reports on the evaluation of the This is Me (TIM) mindful life-storytelling board game by the European project MinD. Using a co-design methodology, TIM was developed with and for people with mild to moderate dementia to support their wellbeing by enhancing self-empowerment and social engagement. A focus group methodology was used to evaluate TIM with 50 people with dementia and 19 carers across four countries. TIM was evaluated with regard to the usability and experience of the design as well as people's emotional wellbeing, social engagement and agency. The thematic analysis demonstrated that the combination of life-storytelling and mindfulness allowed players to engage in meaningful social interaction and, as a result, they reported enjoyment, learning, more acceptance of the past and present situation, and that they perceived looking forward into the future together with others as helpful. The study demonstrates that design can be a useful means to support people with dementia in aspects of emotional wellbeing, social engagement and a sense of agency.

Assessing the generalisability of a multicentre qualitative dementia research: the experience and challenges faced by the MinD project in Europe.

Background: Generalisation of findings is an important aspect of research and essential for evidence-based practice. While generalisation is common in quantitative research, there is a lack of generalisability in qualitative research. This paper presents the experience and challenges faced by the Designing for People with Dementia (MinD) project in meeting the requirements to strengthen the generalisation of findings on the lived experience of people living with dementia and their engagement to co-create designs to empower their everyday living.   Methods: Polit and Beck (2010)'s strategies to generalise qualitative findings were applied: (1) replication in sampling; (2) replication of studies; (3) meta-synthesis of findings; (4) reflexivity and conceptualization; (5) immersion with the data; and (6) thick description. Results: While it is possible to increase the generabilisabilty of qualitative evidence through the replication of the sampling to attain a large, heterogeneous sample in different and multiple contexts and environments; implementation of sound and robust research; conducting in-depth analysis and interpretation collaboratively for emergent themes; and meeting the thick description requirement, there are challenges that the project team faced in implementing some of the Polit and Beck's strategies because of the condition, namely dementia, that our participants are having. Other challenges faced were: the language and cultural diversity in the team; diverse  work and organisational procedures; and the inter-disciplinary differences relating to the methods of enquiry, approaches and techniques to conduct research. These challenges will need to be identified and addressed at the start of the project with a strong leadership to ensure a seamless journey to complete the project successfully. Trust between the researchers and participants, and time to build this trust are critical to recruitment and participation in the study; these factors are of utmost important in research involving participants with condition such as dementia.

Presentation of breast cancer, help seeking behaviour and experience of patients in their cancer journey in Singapore: a qualitative study.

BACKGROUND: Little is known about the presentation, help seeking behaviour for breast cancer in Singapore. Nor was there a study exploring the experience of patients in their breast cancer journey. METHODS: A qualitative interview study with thematic analysis, conducted with 36 patients. RESULTS: There is no clear pattern of presentation for breast cancer by cancer stage at diagnosis, age and ethnicity in the cancer journey of this group of patients. Patients were diagnosed with early to advanced stages cancer regardless of when they presented or took up treatment in their cancer journey. The reasons patients sought medical attention also did not appear to differ between the stages of cancer diagnosed, ethnic and age. Without setting a measure to define early and late presentation, we found that women shared similar experience in their breast cancer journey, regardless of age, ethnicity and stage of cancer at diagnosis. Poor knowledge of breast cancer (symptoms and causes); few practised regular BSE; denial of symptom; fear of hospitalisation, diagnosis and treatment; worries and stress over financial burden of treatment; misinformation in magazine and online sources; diet; stress; caring responsibility; support network; and use of alternative medicine before and after diagnosis were identified in patients' narratives. Strong social support; fear of being an emotional and financial burden for the family; and financial worries during treatment were also the recurring themes after diagnosis. CONCLUSION: A measure of breast cancer presentation - that accounts for the patient's experience in the cancer journey, the time interval and tumour biology - that is meaningful to patients, clinicians and researchers is needed. For research on late and delayed presentation, details on BSE practice - how often, when and was it done correctly - will improve the accuracy of time delay interval. For the public, concerted efforts to improve knowledge of breast cancer, survival and prognosis for early-diagnosed cancer, and the importance of regular and correct technique to perform BSE, are critical and urgent to address the rising breast cancer incidence in the country.

Awareness, Facilitators, and Barriers to Policy Implementation Related to Obesity Prevention for Primary School Children in Malaysia.

PURPOSE: To assess the awareness, facilitators, and barriers to policy implementation related to obesity prevention for primary school children. DESIGN: A cross-sectional study administered using an online questionnaire. SETTING: Conducted in 447 primary schools in a state in Malaysia. PARTICIPANTS: One school administrator from each school served as a participant. MEASURES: The questionnaires consisted of 32 items on awareness, policy implementation, and facilitators and barriers to policy implementation. ANALYSIS: Descriptive analysis was used to describe the awareness, facilitators, and barriers of policies implementation. Association between schools' characteristics and policy implementation was assessed using logistic regression. RESULTS: The majority (90%) of school administrators were aware of the policies. However, only 50% to 70% of schools had implemented the policies fully. Reported barriers were lack of equipment, insufficient training, and limited time to complete implementation. Facilitators of policy implementation were commitment from the schools, staff members, students, and canteen operators. Policy implementation was comparable in all school types and locality; except the policy on "Food and Drinks sold at the school canteens" was implemented by more rural schools compared to urban schools (odds ratio: 1.74, 95% confidence interval: 1.13-2.69). CONCLUSION: Majority of the school administrators were aware of the existing policies; however, the implementation was only satisfactory. The identified barriers to policy implementation were modifiable and thus, the stakeholders should consider restrategizing plans in overcoming them.

Breast cancer presentation delays among Arab and national women in the UAE: a qualitative study.

Breast cancer (BC) is a disease that has improved prospects for survival if detected and treated early. Delayed help-seeking behavior, with poor survival as a consequence, is an important public health issue in the Middle East. More than 75% of breast cancer patients in the United Arab Emirates (UAE) seek medical advice after experiencing a sign or symptom of the disease and many seek such advice late. Our aim was to explore factors influencing delayed presentation for treatment after self-discovery of symptoms consistent with breast cancer in Arab women in the United Arab Emirates (UAE), and to explore facilitators and barriers of women's health seeking behavior in the complex religiously dominated society of the UAE. A qualitative descriptive approach using semi-structured interviews was used. We interviewed nineteen BC survivors aged 35-70 who have experienced delayed presentation to treatment after symptomatic recognition of BC. The time interval between initial experience of symptoms consistent with BC, and taking action to seek medical help was between three months to three years. The key themes that emerged from the interviews were varying responses to symptom recognition, fear of societal stigmatization, and concerns regarding abandonment by spouse because of BC. Culture has a strong influence on the decisions of women in the UAE society. The lack of awareness about signs and symptoms of BC and routine screening has an important effect on symptom appraisal and subsequently decision making regarding options for treatment.

Barriers to early presentation of self-discovered breast cancer in Singapore and Malaysia: a qualitative multicentre study.

OBJECTIVE: To explore and compare barriers to early presentation of self-discovered breast cancer in Singapore and Malaysia. DESIGN: A qualitative interview study with thematic analysis of transcripts. PARTICIPANTS: 67 patients with self-discovered breast symptoms were included in the analysis. Of these, 36% were of Malay ethnicity, 39% were Chinese and 25% Indian, with an average age of 58 years (range 24-82 years). The number of women diagnosed at early stages of cancer almost equalled those at advanced stages. Approximately three-quarters presented with a painless lump, one-quarter experienced a painful lump and 10% had atypical symptoms. SETTING: University hospital setting in Singapore and Malaysia. RESULTS: Patients revealed barriers to early presentation not previously reported: the poor quality of online website information about breast symptoms, financial issues and the negative influence of relatives in both countries, while perceived poor quality of care and services in state-run hospitals and misdiagnosis by healthcare professionals were reported in Malaysia. The pattern of presentation by ethnicity remained unchanged where more Malay delayed help-seeking and had more advanced cancer compared to Chinese and Indian patients. CONCLUSIONS: There are few differences in the pattern of presentation and in the reported barriers to seek medical care after symptom discovery between Singapore and Malaysia despite their differing economic status. Strategies to reduce delayed presentation are: a need to improve knowledge of disease, symptoms and causes, quality of care and services, and quality of online information; and addressing fear of diagnosis, treatment and hospitalisation, with more effort focused on the Malay ethnic group. Training is needed to avoid missed diagnoses and other factors contributing to delay among health professionals.

Do people really know what makes a family history of cancer?

BACKGROUND: Family history is often referred to as a family tree in casual everyday conservations, but it carries a different connotation in medicine. This study is the first to investigate people's understanding of 'family medical history' and the concept of 'family' in the context of inherited cancer. METHODS: Three hundred and nine staff at the Faculty of Medicine and Health, University of Leeds completed an online web survey. RESULTS: Not all respondents understood or knew what makes a family history of cancer. Only 54% knew exactly the type of information required to make a family history. Apart from blood relatives, adopted and step-siblings, step parents, in-laws, spouses, friends and colleagues were also named as 'family' for family history taking. Personal experience of living with cancer and academic qualification were not significant in influencing knowledge of family history. CONCLUSIONS: There is misunderstanding and poor knowledge of family history of cancer and the type of information required to make a family history even in a sample of people teaching and researching medicine and health issues. Public understanding of the value of family medical history in cancer prevention and management is important if informed clinical decisions and appropriate health care are to be delivered.

Breast cancer in South East Asia: comparison of presentation and outcome between a middle income and a high income country.

BACKGROUND: There are large differences in socio-economic growth within the region of South East Asia, leading to sharp contrasts in health-systems development between countries. This study compares breast cancer presentation and outcome between patients from a high income country (Singapore) and a middle income country (Malaysia) in South East Asia. METHODS: Within the Singapore Malaysia Breast Cancer Registry we identified all consecutive patients diagnosed with breast cancer between 1993 and 2007 at the National University Hospital in Singapore (high income country, n=2,141) and the University of Malaya Medical Center in Kuala Lumpur, Malaysia (middle income country, n=3,320). We compared demographics, tumor characteristics, treatment patterns, and survival between patients from both countries. RESULTS: In Malaysia, patients were less often diagnosed with in situ breast cancer (adjusted odds ratio [ORadj] 0.2; 95% confidence interval [95% CI] 0.1-0.3), more likely to be diagnosed with late stage (III and IV) disease (ORadj for stage III 1.6; 95% CI 1.3-2.0; ORadj for stage IV 1.2; 95% CI 1.1-1.4) as compared to patients from Singapore. Univariate analysis showed that Malaysian patients were at a 72% increased risk of death as compared to Singaporeans. After adjusting for other prognostic factors, the risk decreased by only 5% (ORadj 1.67, 95% CI 1.44-1.92). CONCLUSIONS: Differences in way of presentation (except stage and tumor size) and treatment of breast cancer patients from the two countries are small. The overall survival of breast cancer patients from Malaysia is much lower than that of Singaporean patients.

Empirical comparisons of patient delay and help seeking models for breast cancer: fitness of models for use and generalisation.

BACKGROUND: Health behaviour models are continuously being developed to investigate patient delay and help seeking behaviour for breast cancer. Their fitness for generalisation to another setting has not been examined and little is known of their appropriateness for use. METHODS: The models' building blocks (theories, concepts, constructs and variables) and settings were systematically examined and compared. RESULTS: Six models of patient delay and help seeking for breast cancer were developed in a period of seven years (2003-2010). Theories of individual and interpersonal health behaviour, and various combinations of concepts and constructs were used to build these models. There is a lack of consensus in the terminology used to define constructs and variables. Constructs and variables together explained some of the variance of patient delay and help seeking. CONCLUSION: Existing patient delay and help seeking models for breast cancer were tested and yielded some degree of confirmation of their ability in explaining delayed presentation and help seeking behaviour. More models are likely to be developed in the future to account for factors currently missing in the existing models. To ease this process, there is a need for greater consensus and a shared conceptual language, as well as to advance knowledge and research in this field.

Factors influencing late presentation for breast cancer in the middle East: a systematic review.

BACKGROUND: Breast cancer is the most common female type of cancer in the Middle East. A review of the evidence about the reasons people did not seek medical care has not been conducted for this region. METHODS: A systematic review was undertaken to identify the explanatory factors and assess the strength of the evidence leading to late or delayed presentation for breast cancer in the Middle East. RESULTS: Electronic databases and websites were searched from 1970 to March 2011 and yielded approximately 1801 studies and of which, only 10 were relevant. Of these, 6 studies met the inclusion criteria and they were either Egyptian or Iranian. All studies employed quantitative methods to investigate late and delayed presentation for breast cancer, and most defined the term delay in number of weeks or months. Older age and lower educational level were found to have strong effects in explaining late presentation. Having no family history of breast cancer was found to have moderately effect on breast cancer late presentation. CONCLUSION: Our review revealed the need to conduct research in the Middle East and our findings indicated the importance of considering older age, low educational level and a family history of cancer when planning and developing health strategies to reduce the burden of late presentation.

Late presentation and management of South Asian breast cancer patients in West Yorkshire, United Kingdom.

BACKGROUND: The objective of this study was to bridge the knowledge gap and improve our understanding of the late presentation and management of breast cancer among South Asian women of non-oriental origin (SA) living in the United Kingdom. METHODS: Retrospective review of the breast cancer waiting list data-base held at Calderdale and Huddersfield NHS trust was undertaken to identify SA women diagnosed with breast cancer from January 2000 to August 2007. RESULTS: We identified 41 (2.5%) SA women among 1,630 patients diagnosed with breast cancer during this period and 36 were included (median age=53.5 years, range=32-84). Only 19% (n=7) were screen detected and 81% (n=29) presented thorough symptomatic breast clinic. In the latter, 66% (n=19) were in the screening age group and 45% (n=13) presented beyond 8 weeks (late presentation). In our cohort, 91% (n=29) patients had advanced disease (TNM stage 2 and 3) resulting in a high mastectomy rate of 61% (n=22). 19% (n=7) died as a direct result of cancer and the remaining 78% (n=28) remains disease free following treatment thus far. CONCLUSION: The delay in presentation and poor national breast screening programme uptake among the SA women resulted in advanced disease at diagnosis. There is need for increasing the breast cancer awareness as well as encouraging breast screening among SA women in the UK.

Culture, attitude and knowledge about breast cancer and preventive measures: a qualitative study of South Asian breast cancer patients in the UK.

BACKGROUND: Little is known about the influence of culture and beliefs about breast cancer, and its implications on preventive health behaviour among South Asian people in the UK. METHODS: Using a qualitative approach, 24 South Asian breast cancer patients and their significant others were interviewed. RESULTS: Most patients were unfamiliar with the subject of cancer; they expressed lack of knowledge of cancer as a disease and its symptoms. They identified a painless lump in the breast as sign of abnormality, but not cancer. They also did not know any non-lump breast symptoms. Over half participated in breast screening after encouragement from daughters or relatives. Most did not practise breast self-examination. Perceptions of cancer and health behaviour were influenced by cultural beliefs. Common themes were cancer is a taboo subject and cancer is a stigma. Patients also expressed misunderstandings about the cause of cancer. Cancer in the family had ramifications on children' s marriage prospects and may cause marital breakdown. Terminology used also caused communication problems with healthcare professionals and within the family: the use of ' chest' to substitute ' breast' changed the meaning of the message conveyed. CONCLUSIONS: Cultural beliefs and practices accentuate difficulties in understanding breast cancer, breast screening and breast self-examination, and can prevent South Asian women from adopting preventive health practices.

The UK-SEA-ME Psychosocial-Cultural Cancer Research Network: setting the stage for applied qualitative research on cancer health behaviour in southeast Asia and the Middle East.

Psychosocial and cultural factors influencing cancer health behaviour have not been systematically investigated outside the western culture, and qualitative research is the best approach for this type of social research. The research methods employed to study health problems in Asia predominantly are quantitative techniques. The set up of the first psychosocial cancer research network in Asia marks the beginning of a collaboration to promote and spearhead applied qualitative healthcare research in cancer in the UK, Southeast Asia and the Middle East. This paper sets out the rationale, objectives and mission for the UK-SEA-ME Psychosocial-Cultural Cancer Research Network. The UK-SEA-ME network is made up of collaborators from the University of Leeds (UK), the University of Malaya (Malaysia), the National University of Singapore (Singapore) and the University of United Arab Emirates (UAE). The network promotes applied qualitative research to investigate the psychosocial and cultural factors influencing delayed and late presentation and diagnosis for cancer (breast cancer) in partner countries, as well as advocating the use of the mixed-methods research approach. The network also offers knowledge transfer for capacity building within network universities. The mission of the network is to improve public awareness about the importance of early management and prevention of cancer through research in Asia.

Factors influencing consultation to discuss family history of cancer by asymptomatic patients in primary care.

Patient self-initiated consultations to discuss family history of cancer in primary care and the factors leading to these consultations have not been investigated. Seventy-one out of 150 asymptomatic patients with a family history of cancer at the Yorkshire Cancer Genetics Service participated in this study. A semi-structured questionnaire was administered. The results show that (1) family cancer events, doctors' advice and reaching the age of cancer-affected relatives were more salient in raising awareness of the added cancer risk due to family history than media and publicity, and knowledge of the genetics services; (2) knowledge of family medical history and its clinical value is not easy to ascertain; (3) the inter-relationships with other causal beliefs are of interest and could provide insights to understand the factors motivating patients to discuss family history or cancer risk; (4) the belief that 'cancer runs in the family' or is 'a family thing' may not be sufficient to heighten perceived cancer risk and motivate patients to seek medical advice; and (5) understanding of the medical concept and clinical value of family history is poor even in this group of patients who initiated the GP consultations. In conclusion, because most primary care practitioners are likely to rely on patient initiated discussion to identify individuals at an increased risk of cancer because of their family history, these findings are therefore important to help doctors and health providers understand the reasons influencing asymptomatic patients to self-refer themselves in primary care and discuss cancer risk in order to provide appropriate care.

Preferences of older patients and choice of treatment location in the UK: a binary choice experiment.

Current National Health Service (NHS) policy places importance on allowing patients to choose the time and location of their treatment. However, existing evidence suggests that older people have distinct needs and preferences from those of the general population. This study aimed to elicit preferences over cataract surgery from older people using a stated preference experiment. In order to reduce the cognitive load of the experiment, a binary choice format (accept treatment, reject treatment) was used. Analysis suggests that the strongest determinant of whether or not to accept treatment may be whether or not a consultant performs the operation. In monetary equivalents, a one mile increase in travel and a 1 week increase in waiting time are both valued at approximately 2 pounds, whilst consultant-led care is valued at approximately 25 pounds. Whilst the majority of our sample ultimately selected the closest treatment location available the results here suggest that older people are able to make trade-offs between pertinent attributes of choice. Here, the closest treatment location may simply be the one that best reflects their preferences.

Factors influencing the referrals in primary care of asymptomatic patients with a family history of cancer.

PURPOSE: To describe the events and the reasoning that led UK general practitioners to make a direct referral to a genetics clinic for a family history of cancer. METHODS: Asymptomatic patients with a family history of cancer and general practitioners who had referred them to a genetics clinic were eligible to participate. Semi-structured interviews incorporating a self-completed questionnaire were conducted with the general practitioners. Questions about the referral had to be framed in general terms as few general practitioners could remember the index case. Individual face-to-face interviews based on a topic guide were conducted with the patients. RESULTS: Thirty-six of 54 eligible general practitioners and 71 asymptomatic patients with a family history of cancer completed the study. General practitioners adopted a reactive rather than proactive role in the provision of genetic services for asymptomatic patients with a family history of cancer. Most general practitioners favored cancer diagnostic clinics as a referral pathway, and made a referral to genetics only when patients or a hospital doctor specifically requested this. More idiosyncratic approaches to the referral decision were also encountered. Updating of skills and knowledge in genetics remained a low priority despite acknowledged inadequacies. CONCLUSIONS: Referral guidelines that are practicable in the context of a busy primary care clinic need to be developed if primary care practitioners are to play the major role desired for them in genetics.