Using experience-based co-design to prioritise areas for improvement for patients recovering from critical illness.

OBJECTIVES: Critical illness recovery is a journey; from intensive care unit to hospital ward to home. However, evidence is limited on how best to enable recovery from critical illness. This study aimed to prioritise areas for improvement in care and services for patients recovering from critical illness. RESEARCH DESIGN: This study used experience-based co-design. Service users and providers worked in partnership to identify and prioritise service improvements for patients who had survived an episode of critical illness. METHOD: Qualitative interviews were carried out with patients (n = 10) who had experienced critical illness, and staff (n = 9) who had experienced caring for patients in the intensive care unit. Key patient touchpoints were identified and used to produce a film, reflecting the critical illness journey. A patient feedback event incorporated an emotional mapping exercise, to identify key points during the recovery journey. A joint patient/family (n = 10) and staff (n = 10) event was held to view the film and identify priorities for improvements. FINDINGS: Emotional mapping highlighted areas where services were not synchronised with patients' needs. Four patient-focussed priorities for service improvement emerged 1. Improving the critical care experience, 2. Addressing patients' emotional and psychological needs, 3. Positioning patients at the centre of services and 4. Building a supportive framework for recovery. CONCLUSION: Evidence-based co-design was used successfully in this study to identify priorities for improvements for patients recovering from critical illness. This approach positions patients at the centre of service improvements and realigns care delivery around what matters most to patients. Person-centred care provision underpins all identified priorities. IMPLICATIONS FOR CLINICAL PRACTICE: Intensive care unit staff should get to know patients and their families by talking more to patients and families about their care and engaging in more non-medical conversations. Emotional and psychological support should be provided to aid rehabilitation and recovery from critical illness in the intensive care unit, on general wards, and in the community. Information and services should be available when patients need them, rather than at fixed time points or settings. Recovery services should focus on enabling and building the self-efficacy of patients to empower them to be in control of their recovery journey.

Patient initiated follow-up in cancer patients: A systematic review.

Background: Patient-initiated follow-up (PIFU) is increasingly being implemented for oncology patients, particularly during the COVID-19 pandemic, given the necessary reduction in face-to-face hospital outpatient appointments. We do not know if PIFU has a positive (or negative) impact on overall, or progression free, survival. Objectives: To investigate the impact of PIFU on overall survival, progression free survival, patient satisfaction, psychological morbidity, specifically quality of life (QoL) and economic costs compared to hospital follow up (HFU), for any type of cancer. Methods: We carried out a systematic review using five electronic databases: MEDLINE, CINAHL, EMBASE, PsycInfo and Cochrane Central Register of Controlled Trials. Studies were eligible if they were controlled clinical trials comparing PIFU with another form of active follow-up. Effectiveness was assessed using the primary outcome of overall survival and secondary outcomes of progression free survival, patient satisfaction, psychological morbidity, QoL and cost effectiveness. Results: Eight studies met the inclusion criteria and were included. Only one study included survival as a primary outcome and indicated no significant differences between hospital-based follow-up and PIFU, although not adequately powered to detect a difference in survival. For secondary outcomes, few differences were found between PIFU and other forms of active follow-up. One study reported significant differences in fear of cancer recurrence between PIFU and HFU although did not reach the limit of clinical significance; in the short term, fear decreased significantly more in hospital based follow-up. Conclusion: We do not have evidence to support the impact of PIFU on survival or progression free survival. Fully powered randomized controlled trials are required to determine the full impact of PIFU in the longer term.

The patient needs assessment in cancer care: identifying barriers and facilitators to implementation in the UK and Canada.

PURPOSE: Personalised information and support can be provided to cancer survivors using a structured approach. Needs assessment tools such as the Holistic Needs Assessment (HNA) in the UK and the Comprehensive Problem and Symptom Screening (COMPASS) questionnaire in Canada are recommended for use in practice; however, they are not widely embedded into practice. The study aimed to determine the extent to which nurses working in cancer care in the UK and Manitoba value NA and identify any barriers and facilitators they experience. METHOD: Oncology nurses involved in the care of cancer patients in the UK (n = 110) and Manitoba (n = 221) were emailed a link to an online survey by lead cancer nurses in the participating institutions. A snowball technique was used to increase participation across the UK resulting in 306 oncology nurses completing the survey in the UK and 116 in Canada. RESULTS: Participants expressed concerns that these assessments were becoming bureaucratic "tick-box exercises" which did not meet patients' needs. Barriers to completion were time, staff shortages, lack of confidence, privacy, and resources. Facilitators were privacy for confidential discussions, training, confidence in knowledge and skills, and referral to resources. CONCLUSION: Many busy oncology nurses completed this survey demonstrating the importance they attach to HNAs and COMPASS. The challenges faced with implementing these assessments into everyday practice require training, time, support services, and an appropriate environment. It is vital that the HNA and COMPASS are conducted at optimum times for patients to fully utilise time and resources.

Exploring health care professionals views on alternative approaches to cancer follow-up and barriers and facilitators to implementation of a recovery package.

PURPOSE: To meet the long-term needs of cancer survivors the focus of recent cancer care reform in the United Kingdom (UK) has been the implementation of alternative follow-up strategies to relieve the growing pressures threatening to overwhelm cancer services. In 2013, the UK's National Cancer Survivorship Initiative recommended an integrated package of care called the Recovery Package to meet cancer survivors' psychosocial and information needs and supported self-management. METHOD: We aimed to explore health care professionals' views of alternative strategies for follow-up care, and perceived barriers and facilitators to implementation of the Recovery Package for patients who had completed treatment for cancer. Semi-structured interviews with 19 participants sought views and experiences of key aspects of cancer care follow-up and aspects of the Recovery Package implementation. RESULTS: Seven themes emerged from the data; sustainability and capacity, cost implications, primary care, self-management, recovery package, resistance to change, and visions for the future. Traditional hospital follow-up was considered suitable for patients with complex needs, rarer forms of cancer and/or a poorer prognosis. Risk stratification was considered a vital element of any future strategy as was interoperability of digital communication systems between health care providers. Charitable funding had enabled one site to introduce all elements of the recovery package for patients with common cancers. CONCLUSION: Charitable funding had enabled implementation of elements of the Recovery Package. However, new approaches require services to be commissioned and funded appropriately with effective communication between patients and primary and secondary care facilitated by interoperability of health care records.

Secret groups and open forums: Defining online support communities from the perspective of people affected by cancer.

OBJECTIVE: A quarter of people diagnosed with cancer lack social support. Online cancer communities could allow people to connect and support one another. However, the current proliferation of online support communities constitutes a range of online environments with differing communication capacities and limitations. It is unclear what is perceived as online cancer community support and how different features can help or hinder supportive group processes. This study aimed to explore how perceived support is influenced by the different features and formats of online support environments. METHODS: In-depth qualitative interviews were conducted with 23 individuals affected by a range of cancer diagnoses, including both cancer survivors and family members. Data were analysed using deductive thematic analysis guided by a constructivist epistemological perspective. FINDINGS: Online supportive communities were defined and differentiated by two themes. Firstly, 'Open forums' were identified with thematic properties which facilitated a uniquely informative environment including 'Safety in anonymity', 'Perceived reliability' and 'Exposure and detachment'. Secondly, 'Secret groups' were identified with thematic properties which enhanced an emotionally supportive environment including 'Personalised interactions', an overt 'Peer hierarchy', and 'Crossing the virtual divide'. CONCLUSIONS: Properties of groups can engender different degrees of interpersonal relations and different supportive interactions. In particular, support community designers may want to adapt key features such as anonymity, trustworthiness of websites, and the personalised nature of conversations to influence the development of supportive environments. In personalised peer-led groups, it may be prudent to provide guidance on how to reassert a positive environment if arguments break out online.

Endometrial cancer patients' preferences for follow-up after treatment: A cross-sectional survey.

PURPOSE: Alternatives to hospital follow-up (HFU) following treatment for cancer have been advocated. Telephone follow-up (TFU) and patient-initiated follow-up are being implemented but it is unclear if these approaches will meet the preferences and needs of patients. This study aimed to explore the preferences of endometrial cancer patients and their levels of satisfaction with HFU and nurse-led TFU. METHODS: A cross-sectional survey design was utilised and a questionnaire was administered to 236 patients who had participated in a randomised controlled trial comparing HFU with TFU for women diagnosed with Stage I endometrial cancer (ENDCAT trial). RESULTS: 211 (89.4%) patients returned the questionnaire; 105 in the TFU group and 106 in the HFU group. The TFU group were more likely to indicate that appointments were on time (p < 0.001) and were more likely to report that their appointments were thorough (p = 0.011). Participants tended to prefer what was familiar to them. Those in the HFU group tended to prefer hospital-based appointments while the TFU group tended to prefer appointments with a clinical nurse specialist, regardless of locality. CONCLUSIONS: To provide patient centred follow-up services we need to ensure that patient preferences are taken into account and understand that patients may come to prefer what they have experienced. Patient initiated approaches may become standard and preferred practice but TFU remains a high-quality alternative to HFU and may provide an effective transition between HFU and patient-initiated approaches.

Exploring the acceptability and feasibility of patient-initiated follow-up for women treated for stage I endometrial cancer.

PURPOSE: There is a strong shift away from hospital-based approaches to follow-up after active treatment for cancer with supported self-management being promoted as an approach to long term recovery. We aimed to determine the acceptability and feasibility of patient-initiated follow-up (PIFU), supported by a self-management approach, for patients treated for Stage I endometrial cancer. METHODS: A mixed methods study was undertaken. Participants were asked to forego hospital outpatient follow-up appointments, supported by a self-management approach. Outcome measures included satisfaction with information and service, psychological morbidity, quality of life and preferences for follow-up. Qualitative interviews were carried out with study participants to determine their views on follow-up in general and PIFU in particular. RESULTS: We recruited 17 patients. High levels of satisfaction were evident with no physical or psychological detriment. Self-management was a favoured option. Participants questioned the value of hospital follow-up and were willing to engage in self-management if they knew who to contact if they had a problem and were aware of the signs and symptoms of recurrence. However, uptake to the study was low and further work is needed to explore if recruitment to a randomised controlled trial (RCT) is a viable option. CONCLUSIONS: Alternative approaches to hospital-based follow-up need to demonstrate that patients feel supported, knowing what symptoms to report and to whom. This study shows acceptability of a supported self-management approach but raises some concerns about the feasibility of recruitment to a future RCT.

"It's not just about prostate cancer, it's about being a gay man": A qualitative study of gay men's experiences of healthcare provision in the UK.

Following a diagnosis of prostate cancer, men require information and support from healthcare providers which is tailored to their individual needs. Studies reporting on the needs of gay men with prostate cancer, and their experiences of healthcare provision, are lacking. This study highlights the issues affecting this group of men and the implications for healthcare delivery in the United Kingdom. In-depth interviews were conducted with 12 gay men who had been diagnosed with prostate cancer. A phenomenological approach was used to collect and analyse data. Participants wanted, and expected, candid discussions with healthcare professionals, about how prostate cancer could affect their lives, sexual function, and how to access culturally relevant support before and after treatment. Participants perceived that their healthcare team had little knowledge about their needs, and if, or how, their experience differed due to their sexual orientation. Information provided was perceived as being misplaced or informed by heteronormative assumptions. Consideration should be given to requesting sexual orientation when recording patient information, if patients are willing to disclose. Training should be provided for healthcare professionals to enable them to provide information and support that is culturally relevant at all stages of the consultation.

A systematic review of barriers and enablers to South Asian women's attendance for asymptomatic screening of breast and cervical cancers in emigrant countries.

OBJECTIVES: The aim of this review was to identify the cultural, social, structural and behavioural factors that influence asymptomatic breast and cervical cancer screening attendance in South Asian populations, in order to improve uptake and propose priorities for further research. DESIGN: A systematic review of the literature for inductive, comparative, prospective and intervention studies. We searched the following databases: MEDLINE/In-Process, Web of Science, EMBASE, SCOPUS, CENTRAL, CDSR, CINAHL, PsycINFO and PsycARTICLES from database inception to 23 January 2018. The review included studies on the cultural, social, structural and behavioural factors that influence asymptomatic breast and cervical cancer screening attendance and cervical smear testing (Papanicolaou test) in South Asian populations and those published in the English language. The framework analysis method was used and themes were drawn out following the thematic analysis method. SETTINGS: Asymptomatic breast or cervical screening. PARTICIPANTS: South Asian women, including Bangladeshi, Indian, Pakistani, Sri Lankan, Bhutanese, Maldivian and Nepali populations. RESULTS: 51 included studies were published between 1991 and 2018. Sample sizes ranged from 25 to 38 733 and participants had a mean age of 18 to 83 years. Our review showed that South Asian women generally had lower screening rates than host country women. South Asian women had poorer knowledge of cancer and cancer prevention and experienced more barriers to screening. Cultural practices and assumptions influenced understandings of cancer and prevention, emphasising the importance of host country cultures and healthcare systems. CONCLUSIONS: High-quality research on screening attendance is required using prospective designs, where objectively validated attendance is predicted from cultural understandings, beliefs, norms and practices, thus informing policy on targeting relevant public health messages to the South Asian communities about screening for cancer. PROSPERO REGISTRATION NUMBER: CSD 42015025284.

Cost-Consequence Analysis Alongside a Randomised Controlled Trial of Hospital Versus Telephone Follow-Up after Treatment for Endometrial Cancer.

BACKGROUND: Regular outpatient follow-up programmes are usually offered to patients following treatment for gynaecological and other cancers. Despite the substantial resources involved in providing these programmes, there is evidence that routine follow-up programmes do not affect survival or the likelihood of detecting recurrence and may not meet patient needs. Alternative follow-up modalities may offer the same outcomes at lower cost. We examined the costs of using telephone-based routine follow-up of women treated for endometrial cancer undertaken by specialist gynaecology oncology nurses in comparison to routine hospital-based follow-up. METHODS: The ENDCAT trial randomised 259 women at five centres in the north west of England with a known diagnosis of Stage I endometrial cancer who had completed primary treatment on a 1:1 basis to receive either standard hospital outpatient follow-up or a telephone follow-up intervention administered by specialist nurses. A cost-consequence analysis was undertaken in which we compared costs to the health system and to individuals with the trial's co-primary outcomes of psychological morbidity and participant satisfaction with information received. RESULTS: Psychological morbidity, psychosocial needs, patient satisfaction and quality of life did not differ between arms. Patients randomised to telephone follow-up underwent more and longer consultations. There was no difference in total health service mean per patient costs at 6 months (mean difference £8, 95% percentile confidence interval: - £147 to £141) or 12 months (mean difference: - £77, 95% percentile confidence interval: - £334 to £154). Estimated return journey costs per patient for hospital consultations were £11.47. Productivity costs were approximately twice as high under hospital follow-up. CONCLUSION: Telephone follow-up was estimated to be cost-neutral for the NHS and may free up clinic time for other patients. There was some evidence that telephone follow-up may be more efficient for patients and wider society, and is not associated with additional psychological morbidity, lower patient satisfaction or reduced quality of life. TRIAL REGISTRATION: ISRCTN: 75220876, prospectively registered 28 October 2011.

Should consultation recording use be a practice standard? A systematic review of the effectiveness and implementation of consultation recordings.

OBJECTIVE: To conduct a systematic review of the effectiveness of consultation recordings and identify factors contributing to their successful implementation in health-care settings. METHODS: A systematic review was conducted for quantitative studies examining the effectiveness of consultation recordings in health care. Two independent reviewers assessed the relevance and quality of retrieved quantitative studies by using standardized criteria. Study findings were examined to determine consultation recording effectiveness and to identify barriers and facilitators to implementation. A supplementary review of qualitative evidence was performed to further explicate implementation factors. RESULTS: Of the 3373 articles retrieved in the quantitative search, 26 satisfied the standardized inclusion criteria (12 randomized controlled trials, 1 quasi-experiment, and 13 cross-sectional studies). Most patients found consultation recordings beneficial. Statistically significant evidentiary support was found for the beneficial impact of consultation recordings on the following patient reported outcomes: knowledge, perception of being informed, information recall, decision-making factors, anxiety, and depression. Implementation barriers included strength of evidence concerns, patient distress, impact of the recording on consultation quality, clinic procedures, medico-legal issues, and resource costs. Facilitators included comfort with being recorded, clinical champions, legal strategies, efficient recording procedures, and a positive consultation recording experience. CONCLUSIONS: Consultation recordings are valuable to patients and positively associated with patient-reported outcomes. Successful integration of consultation recording use into clinical practice requires an administratively supported, systematic approach to addressing implementation factors.

Cancer through black eyes - The views of UK based black men towards cancer: A constructivist grounded theory study.

PURPOSE: Little is known about black African (BA) and black African-Caribbean (BAC) men's views towards cancer; yet culture and acculturation can contribute to the way in which people understand, explain and develop their attitudes towards cancer. Hence, cancer prevention and early detection strategies may not be sensitive to United Kingdom (UK)-based black men's views, affecting their awareness of risk factors and early detection services. This study explored the views of UK-based BA and BAC men towards cancer. METHOD: In collaboration with black community organisations based in four major cities in the UK, 25 participants were recruited using convenience and theoretical sampling methods. Data were collected using 33 semi-structured interviews, and analysed using grounded theory analytic procedures. RESULTS: One core category (cancer through black eyes) and seven sub-categories emerged; 'cultural views', 'religious beliefs', 'avoiding Babylon', 'alienation', 'suspicious mind', 'advertisements and information influence very little', and 'gap in service provision (bridging the gap)'. Participants' views towards cancer were linked to socially constructed perspectives, linked with cultural and religious beliefs, and shaped by what being a black male means in society. Risk factors such as smoking and obesity had different meanings and symbolisation through black eyes. There were macro- and micro-level similarities and differences between BA and BAC men. CONCLUSIONS: Cancer services and related public-health campaigns aimed at black men need to understand cancer through black eyes. Public health campaigns based solely on the clinical meaning of cancer are incongruent with black men's understandings of cancer, and therefore ineffective at reducing health inequality.

Navigating cancer using online communities: a grounded theory of survivor and family experiences.

PURPOSE: People affected by cancer often have unmet emotional and social support needs. Online cancer communities are a convenient channel for connecting cancer survivors, allowing them to support one another. However, it is unclear whether online community use makes a meaningful contribution to cancer survivorship, as little previous research has examined the experience of using contemporary cancer communities. We aimed to explore the experiences of visitors to online cancer communities. METHODS: Twenty-three in-depth interviews were conducted with online cancer community visitors, including cancer survivors (n = 18), family members (n = 2), and individuals who were both a survivor and family member (n = 3). Interviews were analysed using a grounded theory approach. RESULTS: A theory developed explaining how individuals 'navigated' the experience of cancer using online cancer communities. Online advice and information led participants on a 'journey to become informed'. Online friendships normalised survivorship and cast participants on a 'journey to recreate identity'. Participants navigated a 'journey through different worlds' as they discovered relevant and hidden communities. CONCLUSIONS: This theory highlights virtual paths people affected by cancer can take to self-manage their experience of the disease. Online community experiences can be improved by promoting online evaluation skills and signposting visitors to bereavement support. IMPLICATIONS FOR CANCER SURVIVORS: Cancer survivors can benefit through both lurking and posting in online communities. However, individuals risk becoming distressed when they befriend individuals who may soon die. Additionally, people affected by rarer cancers can struggle to find shared experiences online and may need to look elsewhere for support.

An alternative to costly clinics.

More than 7,200 British women have endometrial cancer diagnosed every year. It is a figure that is rising markedly, with the cancer being linked to problems with obesity on an international scale. Although an early diagnosis leads to a good prognosis, after treatment has been completed patients are asked to attend regular outpatient clinic appointments for three to five years.

Exploring patient experiences of neo-adjuvant chemotherapy for breast cancer.

BACKGROUND AND PURPOSE: Neo-adjuvant chemotherapy is recommended for 'inoperable' locally advanced and inflammatory breast cancers. For operable breast cancers, trials indicate no survival differences between chemotherapy given pre or post-surgery. Communicating evidence based information to patients is complex and studies examining patient experiences of neo-adjuvant chemotherapy are lacking. This study aims to explore the experiences of women who received neo-adjuvant chemotherapy for breast cancer. METHODS: A qualitative approach using in-depth interviews with 20 women who had completed neo-adjuvant chemotherapy for breast cancer. Interview data were analysed using thematic analysis. RESULTS: The sample included a relatively young group of women, with caring responsibilities. Five main themes emerged: coping with the rapid transition from 'well' to 'ill', information needs and decision making, needing support and empathy, impact on family, and creating a new 'normal'. More support was needed towards the end of chemotherapy, when side effects were at their most toxic, and decisions about forthcoming surgery were being made. Some women were referred to psychological services, but usually when a crisis point had been reached. CONCLUSION: Information and support would have been beneficial at key time points. This information is vital in developing services and interventions to meet the complex needs of these patients and potentially prevent late referral to psychological services. Specialist oncology nurses are able to develop empathetic relationships with patients and have the experience, knowledge and skills to inform and support women experiencing neo-adjuvant chemotherapy. Targeting key time points and maintaining relationship throughout neo-adjuvant chemotherapy would be highly beneficial.

What do measures of patient satisfaction with the doctor tell us?

OBJECTIVE: To gain an understanding of how patient satisfaction (PS) with the doctor (PSD) is conceptualized through an empirical review of how it is currently being measured. The content of PS questionnaire items was examined to (a) determine the primary domains underlying PSD, and (b) summarize the specific doctor-related characteristics and behaviors, and patient-related perceptions, composing each domain. METHODS: A scoping review of empirical articles that assessed PSD published from 2000 to November 2013. MEDLINE and PsycINFO databases were searched. RESULTS: The literature search yielded 1726 articles, 316 of which fulfilled study inclusion criteria. PSD was realized in one of four health contexts, with questions being embedded in a larger questionnaire that assessed PS with either: (1) overall healthcare, (2) a specific medical encounter, or (3) the healthcare team. In the fourth context, PSD was the questionnaire's sole focus. Five broad domains underlying PSD were revealed: (1) Communication Attributes; (2) Relational Conduct; (3) Technical Skill/Knowledge; (4) Personal Qualities; and (5) Availability/Accessibility. CONCLUSIONS: Careful consideration of measurement goals and purposes is necessary when selecting a PSD measure. PRACTICE IMPLICATIONS: The five emergent domains underlying PSD point to potential key areas of physician training and foci for quality assessment.

Patient experiences of nurse-led telephone follow-up following treatment for colorectal cancer.

PURPOSE: Colorectal cancer is the third most prevalent cancer worldwide, although mortality rates across most of Europe have decreased in recent years. Historically, patients are asked to return to hospital outpatient clinics following treatment to monitor for disease progression. However, new approaches are being called for that focus on meeting the information and support needs of patients. Telephone follow-up (TFU) by specialist nurses is an alternative approach; this study aimed to explore patient views of TFU. METHODS: Qualitative interviews were conducted with 26 colorectal cancer patients who had received TFU. One interview was also conducted with the specialist nurse who had used a structured intervention to provide TFU. Data were analysed using content analysis. RESULTS: All patients found TFU to be a positive experience and all stated a preference for continuing with TFU. Three main themes emerged from the patient interviews; 1) accessible and convenient care, 2) personalised care, and 3) relationship with the specialist nurse. The themes from the specialist nurse interview were 1) knowing the patient, 2) the benefits of TFU and 3) the challenges of TFU. CONCLUSIONS: TFU was well received by patients; it was perceived as highly convenient and had distinct advantages over hospital follow-up. Continuity of care was an important factor in building a trusting relationship between patient and nurse. Training in the use of the intervention is recommended and it may be useful for specialist nurses to initially meet eligible patients face to face to establish rapport before implementing TFU.

Chinese Elders' views on their interactions in general practice: a Grounded Theory study.

OBJECTIVES: The Chinese ethnic population are among the UK's largest visible minority but there is limited evidence about this population, their views about their interactions with General Practitioners (GPs) and how this impacts on their health. This study aimed to explore Chinese Elders' experiences of and attitudes towards the provision of health services in primary care. DESIGN: The method of investigation was a Grounded Theory study using open-ended in-depth interviews. Purposive and theoretical sampling was used to recruit thirty-three Chinese Elders from Chinese communities in the North West of England. Face-to-face interviews were conducted and audio-recorded; transcripts were translated, back translated, analysed and coded by all members of the research team to identify concepts following the Grounded Theory approach. Themes were generated from the data and were used to guide the study into the theoretical sampling phase of the investigation. RESULTS: Chinese Elders were inclined to present to GPs only when health concerns were perceived as serious. This was defined as being beyond their ability to self-manage. Elders tended to adopt self-management strategies rather than follow professional advice. This was mainly due to communication difficulties, poor understanding of the advice doctors gave, and the way that Chinese patients interpreted and used the advice they were given. Chinese Elders reported that the purpose of contacting doctors was to obtain medicines. They presumed that once medication had been prescribed their symptoms would be cured, and then they believed that they could self-manage their health, usually without further GP or other medical follow up. CONCLUSION: These data suggest that significant misunderstandings between Chinese Elders and GPs exist. The findings highlight the dissatisfaction expressed by Elders regarding their interactions with UK health professionals. Chinese Elders' perceptions are influenced by the way Chinese people think about health and illness, and also by their GPs' assumptions. These findings are of value to UK GPs and family doctors worldwide who are concerned with improving the quality of health services provided to an increasingly ageing migrant Chinese population.

Perceptions and attitudes towards exercise among Chinese elders - the implications of culturally based self-management strategies for effective health-related help seeking and person-centred care.

BACKGROUND: Encouraging the uptake of physical activity among a culturally diverse elderly population presents a challenge for health-care providers across the world. Little is known about the health-care needs of these populations, for example the increasingly ageing group of Chinese elders in many parts of the world who are now facing later life and increasing challenges to their health. OBJECTIVE: This study aimed to explore behaviours and attitudes towards exercise among older Chinese immigrants in the UK to provide insights into the health of Chinese populations in the UK and elsewhere. DESIGN: A Grounded Theory approach using purposive and theoretical sampling with in-depth semi-structured interviews. SETTING AND PARTICIPANTS: Chinese elders were recruited from Chinese communities in the North West of England. Thirty-three participants were interviewed face-to-face and audio-recorded. RESULTS: Participants self-managed exercise based on cultural perceptions of health and ingrained Chinese values. Professional support and information was lacking and relied on folk norms rather than person-centred recommendations for healthy living. Inappropriate exercise regimes could act as a substitute for seeking health-related advice when exercise was often used as a self-monitored barometer to assess their perceived health status. DISCUSSION AND CONCLUSION: Chinese elders may undertake inappropriate exercise, leading to high-risk situations, if appropriate professional information is not provided. Health-care practitioners should devote attention to understanding Chinese elders' attitudes towards exercise, as this may ultimately lead to successful health promotion activities. A person-centred approach that acknowledges and works with self-management practices is advocated.