Assessing the suitability of the Carer Support Needs Assessment Tool (CSNAT-Paediatric) for use with parents of children with a life-limiting condition: A qualitative secondary analysis.

BACKGROUND: The demands of caring for a child with a life-limiting condition can have a profound impact on parents' health and wellbeing. Currently, there is no standard procedure for identifying and addressing the support needs of these parents. AIM: To assess the suitability of the Carer Support Needs Assessment Tool (CSNAT (Paediatric)) for use with parents of children with a life-limiting condition. DESIGN: Secondary qualitative content analysis of two qualitative datasets exploring the health, wellbeing and experiences of support of mothers and fathers of children with a life-limiting condition. SETTING: A total of 30 mothers and 12 fathers were recruited via four UK children's hospices and social media. RESULTS: Parental experiences of support mapped onto the existing domains of the CSNAT (Paediatric). One aspect of their experience, surrounding their child's educational needs, went beyond the existing domains of the CSNAT. An adapted version of the tool CSNAT (Paediatric) should include this domain. CONCLUSION: The CSNAT (Paediatric) is a relevant tool for the assessment of parental support needs. Further research should assess the acceptability and feasibility of implementation of the broader intervention: CSNAT-I (Paediatric).

Chronic myeloid leukaemia: A qualitative interview study exploring disease impact from patient and practitioner perspectives.

PURPOSE: Improvements in chronic myeloid leukaemia treatment mean it is now relevant to examine the experiences of living with this cancer over a lifetime. This qualitative study aimed to investigate the impact of chronic myeloid leukaemia, from patient and healthcare practitioner perspectives. METHODS: The research was set within the UK's Haematological Malignancy Research Network; a population-based cohort of patients newly diagnosed with blood cancer, treated at one of fourteen hospitals. Purposive sampling led to interviews with seventeen patients and thirteen health care practitioners. Data were analysed using thematic analysis. RESULTS: Two analytical themes, "Significant impact of disease and treatment" and "Mediators of the impact of disease and treatment", and six sub-themes, were derived from patient interviews and supported with data from practitioners. Chronic myeloid leukaemia was described by patients as having significant widespread impact, which could be mediated by their knowledge, social support, and the quality of healthcare systems. Practitioners reflected patient accounts, but could underestimate the impact of this cancer. They generally viewed chronic myeloid leukaemia as less complex, severe and impactful than acute blood cancers; a message that reassured patients at diagnosis, but could later unintentionally contribute to difficulties discussing side effects and struggles to cope. CONCLUSION: Chronic myeloid leukaemia may significantly impact individuals, particularly as it is experienced over the lifetime. Greater understanding and discussion of the breadth and extent to which patients are affected, including potential mediators, could enhance clinical care.

Early implementation of the structured medication review in England: a qualitative study.

BACKGROUND: NHS England has introduced a new structured medication review (SMR) service within primary care networks (PCNs) forming during the COVID-19 pandemic. Policy drivers are addressing problematic polypharmacy, reducing avoidable hospitalisations, and delivering better value from medicines spending. This study explores early implementation of the SMR from the perspective of the primary care clinical pharmacist workforce. AIM: To identify factors affecting the early implementation of the SMR service. DESIGN AND SETTING: Qualitative interview study in general practice between September 2020 and June 2021. METHOD: Two semi-structured interviews were carried out with each of 10 newly appointed pharmacists (20 in total) in 10 PCNs in Northern England; and one interview was carried out with 10 pharmacists already established in GP practices in 10 other PCNs across England. Audiorecordings were transcribed verbatim and a modified framework method supported a constructionist thematic analysis. RESULTS: SMRs were not yet a PCN priority and SMR implementation was largely delegated to individual pharmacists; those already in general practice appearing to be more ready for implementation. New pharmacists were on the primary care education pathway and drew on pre-existing practice frames, habits, and heuristics. Those lacking patient-facing expertise sought template-driven, institution-centred practice. Consequently, SMR practices reverted to prior medication review practices, compromising the distinct purposes of the new service. CONCLUSION: Early SMR implementation did not match the vision for patients presented in policy of an invited, holistic, shared decision-making opportunity offered by well-trained pharmacists. There is an important opportunity cost of SMR implementation without prior adequate skills development, testing, and refining.

Sharing Roles and Control in Pediatric Low Risk Febrile Neutropenia: A Multicenter Focus Group Discussion Study Involving Patients, Parents, and Health Care Professionals.

INTRODUCTION: Reducing treatment intensity for pediatric low risk febrile neutropenia may improve quality of life, and reduce hospital-acquired infections and costs. Key stakeholders' attitudes toward early discharge regimens are unknown. This study explored perceptions of reduced therapy regimens in the United Kingdom. MATERIALS AND METHODS: Three study sites were purposively selected for their approaches to risk stratification, treatment protocols, shared care networks, and geographical spread of patients. Patients aged 13 to 18 years, parents of children of all ages and health care professionals participated in focus group discussions. A constant comparison analysis was used. RESULTS: Thirty-two participants spoke of their different roles in managing febrile neutropenia and how these would change if reduced therapy regimens were implemented, how mutual trust would need to be strengthened and responsibility redistributed. Having identified a need for discretion and a desire for individualized care, negotiation within a spectrum of control allows achievement of the potential for realized discretion. Nonattendance exemplifies when control is different and families use their assessments of risk and sense of mutual trust, along with previous experiences, to make decisions. CONCLUSIONS: The significance of shared decision making in improving patient experience through sharing risks, developing mutual trust, and negotiating control to achieve individualized treatment cannot be underestimated.

Experiences of living with chronic myeloid leukaemia and adhering to tyrosine kinase inhibitors: A thematic synthesis of qualitative studies.

PURPOSE: To investigate the experiences of adults living with chronic myeloid leukaemia and treated with tyrosine kinase inhibitors, with particular reference to factors influencing adherence. METHODS: A thematic synthesis of all published qualitative studies examining adults with chronic myeloid leukaemia, receiving tyrosine kinase inhibitors. Eligible publications were identified by searching five electronic databases using defined criteria. The synthesis involved complete coding of extracted data and inductive theme development. RESULTS: Nine studies were included and three overarching themes defined. Overarching themes were: 1) Disease impacts whole life; 2) Disease management strategies; and 3) Valued aspects of care. Side-effects often required physical and psychological adaptation. Patients developed individual decision-making processes to promote adherence and manage side effects. Unintentional non-adherence occurred due to forgetfulness and system failures. Intentional omission also occurred, which together with side effects, was unlikely to be reported to healthcare professionals (HCPs). HCP reassurance about missed doses could reinforce non-adherence. Information needs varied over time and between individuals. Knowledge among patients about treatment was often lacking and could lead to misunderstandings. Patients valued psychological support from HCPs and suggested an individualised approach, facilitating discussion of symptoms, adherence and their perspectives about living with chronic myeloid leukaemia, would improve care. CONCLUSIONS: Patients with chronic myeloid leukaemia experienced significant side-effects from treatment and changes to their psychological and physical well-being. They developed their own strategies to manage their disease and treatment. This should be recognised in interventions to improve education, support and the delivery of care that is compassionate and adequately resourced.

Non-attendance at urgent referral appointments for suspected cancer: a qualitative study to gain understanding from patients and GPs.

BACKGROUND: The 2-week-wait urgent referral policy in the UK has sought to improve cancer outcomes by accelerating diagnosis and treatment. However, around 5-7% of symptomatic referred patients cancel or do not attend their hospital appointment. While subsequent cancer diagnosis was less likely in non-attenders, those with a diagnosis had worse early mortality outcomes. AIM: To examine how interpersonal, communication, social, and organisational factors influence a patient's non-attendance. DESIGN AND SETTING: Qualitative study in GP practices in one Northern English city. METHOD: In-depth, individual interviews were undertaken face-to-face or by telephone between December 2016 and May 2018, followed by thematic framework analysis. RESULTS: In this study 21 GPs, and 24 patients who did not attend or had cancelled their appointment were interviewed, deriving a range of potential explanations for non-attendance, including: system flaws; GP difficulties with booking appointments; patient difficulties with navigating the appointment system, particularly older patients and those from more deprived areas; patients leading 'difficult lives'; and patients' expectations of the referral, informed by their beliefs, circumstances, priorities, and the perceived prognosis. GPs recognised the importance of communication with the patient, particularly the need to tailor communication to perceived patient understanding and anxiety. GPs and practices varied in their responses to patient non-attendance, influenced by time pressures and perceptions of patient responsibility. CONCLUSION: Failure to be seen within 2 weeks of urgent referral resulted from a number of patient and provider factors. The urgent referral process in general practice and cancer services should accommodate patient perceptions and responses, facilitate referral and attendance, and enable responses to patient non-attendance.

Non-attendance at urgent referral appointments for suspected cancer: a qualitative study to gain understanding from patients and GPs.

BACKGROUND: The 2-week-wait urgent referral policy in the UK has sought to improve cancer outcomes by accelerating diagnosis and treatment. However, around 5-7% of symptomatic referred patients cancel or do not attend their hospital appointment. While subsequent cancer diagnosis was less likely in non-attenders, those with a diagnosis had worse early mortality outcomes. AIM: To examine how interpersonal, communication, social, and organisational factors influence a patient's non-attendance. DESIGN AND SETTING: Qualitative study in GP practices in one Northern English city. METHOD: In-depth, individual interviews were undertaken face-to-face or by telephone between December 2016 and May 2018, followed by thematic framework analysis. RESULTS: In this study 21 GPs, and 24 patients who did not attend or had cancelled their appointment were interviewed, deriving a range of potential explanations for non-attendance, including: system flaws; GP difficulties with booking appointments; patient difficulties with navigating the appointment system, particularly older patients and those from more deprived areas; patients leading 'difficult lives'; and patients' expectations of the referral, informed by their beliefs, circumstances, priorities, and the perceived prognosis. GPs recognised the importance of communication with the patient, particularly the need to tailor communication to perceived patient understanding and anxiety. GPs and practices varied in their responses to patient non-attendance, influenced by time pressures and perceptions of patient responsibility. CONCLUSION: Failure to be seen within 2 weeks of urgent referral resulted from a number of patient and provider factors. The urgent referral process in general practice and cancer services should accommodate patient perceptions and responses, facilitate referral and attendance, and enable responses to patient non-attendance.

Patient non-attendance at urgent referral appointments for suspected cancer and its links to cancer diagnosis and one year mortality: A cohort study of patients referred on the Two Week Wait pathway.

BACKGROUND: The 'Two Week Wait' policy aims to ensure patients with suspected cancer are seen within two weeks of referral. However, patient non-attendance can result in this target being missed. This study aimed to identify predictors of non-attendance; and analyse the relationship between attendance and outcomes including cancer diagnosis and early mortality. METHODS: A cohort study of 109,433 adults registered at 105 general practices, referred to a cancer centre within a large NHS hospital trust (April 2009 to December 2016) on the 'Two Week Wait' pathway. RESULTS: 5673 (5.2%) patients did not attend. Non-attendance was largely predicted by patient factors (younger and older age, male gender, greater deprivation, suspected cancer site, earlier year of referral, greater distance to the hospital) over practice factors (greater deprivation, lower Quality and Outcomes Framework score, lower cancer conversion rate, lower cancer detection rate). 10,360 (9.6%) patients were diagnosed with cancer within six months of referral (9.8% attending patients, 5.6% non-attending patients). Among these patients, 2029 (19.6%) died within 12 months of diagnosis: early mortality risk was 31.3% in non-attenders and 19.2% in attending patients. CONCLUSIONS: Non-attendance at urgent referral appointments for suspected cancer involves a minority of patients but happens in predictable groups. Cancer diagnosis was less likely in non-attending patients but these patients had worse early mortality outcomes than attending patients. The study findings have implications for cancer services and policy.

Meta-ethnography of experiences of early discharge, with a focus on paediatric febrile neutropenia.

PURPOSE (STATING THE MAIN PURPOSES AND RESEARCH QUESTION): Many children have no significant sequelae of febrile neutropenia. A systematic review of clinical studies demonstrated patients at low risk of septic complications can be safely treated as outpatients using oral antibiotics with low rates of treatment failure. Introducing earlier discharge may improve quality of life, reduce hospital acquired infection and reduce healthcare service pressures. However, the review raised concerns that this might not be acceptable to patients, families and healthcare professionals. METHODS: This qualitative synthesis explored experiences of early discharge in paediatric febrile neutropenia, including reports from studies of adult febrile neutropenia and from other paediatric conditions. Systematic literature searching preceded meta-ethnographic analysis, including reading the studies and determining relationships between studies, translation of studies and synthesis of these translations. RESULTS: Nine papers were included. The overarching experience of early discharge is that decision-making is complex and difficult and influenced by fear, timing and resources. From this background, we identified two distinct themes. First, participants struggled with practical consequences of treatment regimens, namely childcare, finances and follow-up. A second theme identified social and emotional issues, including isolation, relational and environmental challenges. Linking these, participants considered continuity of care and the need for information important. CONCLUSIONS: Trust and confidence appeared interdependent with resources available to families-both are required to manage early discharge. Socially informed resilience is relevant to facilitating successful discharge strategies. Interventions which foster resilience may mediate the ability and inclination of families to accept early discharge. Services have an important role in recognising and enhancing resilience.

Experience of, awareness of and help-seeking for potential cancer symptoms in smokers and non-smokers: A cross-sectional study.

BACKGROUND: Presenting to primary care with potential cancer symptoms is contingent on one's ability to recognize potentially serious symptoms. We investigated differences between smokers and non-smokers in symptoms experienced, awareness and consulting of potential respiratory, head and neck cancer symptoms. METHODS: Smokers and non-smokers aged over 50 from Yorkshire general practice lists were sent a postal questionnaire asking about symptoms, consulting and awareness of cancer symptoms. Data were analysed using STATA14. RESULTS: Response rate after one reminder was 30.5% (1205/3954). Smoking status was associated with experience of cough (p<0.001), breathlessness (p = 0.002) and tiredness (p = 0.004) with smokers (25.8% of population) more likely than never-smokers (53.6% of population) to experience all three symptoms (cough OR = 2.56;95%CI[1.75-3.75], breathlessness OR = 2.39;95%CI[1.43-4.00], tiredness OR = 1.57;95%CI[1.12-2.19]). Smoking status was associated with awareness of breathlessness as a potential cancer symptom (p = 0.035) and consulting for cough (p = 0.011) with smokers less likely to consult than never-smokers (OR = 0.37;95% CI[0.17-0.80]). CONCLUSION: Our findings suggest that current smokers are more likely to experience cough, breathlessness and tiredness, but are less likely to consult for cough than never-smokers. To increase cancer awareness and promote consulting among smokers, innovative interventions improving symptom recognition and empowering smokers to seek help are required.

Systematic review of reduced therapy regimens for children with low risk febrile neutropenia.

PURPOSE: Reduced intensity therapy for children with low-risk febrile neutropenia may provide benefits to both patients and the health service. We have explored the safety of these regimens and the effect of timing of discharge. METHODS: Multiple electronic databases, conference abstracts and reference lists were searched. Randomised controlled trials (RCT) and prospective observational cohorts examining the location of therapy and/or the route of administration of antibiotics in people younger than 18 years who developed low-risk febrile neutropenia following treatment for cancer were included. Meta-analysis using a random effects model was conducted. I (2) assessed statistical heterogeneity not due to chance. REGISTRATION: PROSPERO (CRD42014005817). RESULTS: Thirty-seven studies involving 3205 episodes of febrile neutropenia were included; 13 RCTs and 24 prospective observational cohorts. Four safety events (two deaths, two intensive care admissions) occurred. In the RCTs, the odds ratio for treatment failure (persistence, worsening or recurrence of fever/infecting organisms, antibiotic modification, new infections, re-admission, admission to critical care or death) with outpatient treatment was 0.98 (95% confidence interval (95%CI) 0.44-2.19, I (2) = 0 %) and with oral treatment was 1.05 (95%CI 0.74-1.48, I (2) = 0 %). The estimated risk of failure using outpatient therapy from all prospective data pooled was 11.2 % (95%CI 9.7-12.8 %, I (2) = 77.2 %) and using oral antibiotics was 10.5 % (95%CI 8.9-12.3 %, I (2) = 78.3 %). The risk of failure was higher when reduced intensity therapies were used immediately after assessment, with lower rates when these were introduced after 48 hours. CONCLUSIONS: Reduced intensity therapy for specified groups is safe with low rates of treatment failure. Services should consider how these can be acceptably implemented.

GPs' perceptions and experiences of public awareness campaigns for cancer: a qualitative enquiry.

BACKGROUND: Public awareness campaigns for cancer are used to alert the UK population to symptoms which, if experienced, should be discussed with their general practitioner (GP). More timely diagnosis of cancer is assumed possible if patients with the appropriate symptoms present to GPs and GPs recognise the need to act on these symptoms. OBJECTIVE: To investigate GPs' perceptions and experiences of public awareness campaigns for cancer. METHODS: Semi-structured interviews with 55 GPs from practices in the North and North East of England and Greater London. Interviews were recorded and transcribed verbatim. Repeated reading of GP transcripts engendered thematic analysis and co-coding ensured legitimacy of findings. RESULTS: Participants supported the underpinning ethos of public health campaigns and articulated a commitment to engaging with patients with respect to cancer warning signs and symptoms despite the common perception that public awareness campaigns increased numbers of consultations. Tensions were evident with regard to increased demands on GP time and primary care resources during a period of major upheaval within the NHS. Concern was raised that some patients remain outwith the reach of campaign messages. The complexity of addressing how public health messages compete with other issues in people's lives was identified as challenging. CONCLUSIONS: General practitioners provided insight into why some members of the general public do not engage with public health messages. Public health/primary care interaction that incorporates GPs' knowledge of their patient populations could advance the search for solutions to a more robust approach to earlier cancer recognition and referral in primary care.

Alexander Technique Lessons, Acupuncture Sessions or usual care for patients with chronic neck pain (ATLAS): study protocol for a randomised controlled trial.

BACKGROUND: Chronic neck pain is a common condition in the adult population. More research is needed to evaluate interventions aiming to facilitate beneficial long-term change. We propose to evaluate the effect of Alexander Technique lessons and acupuncture in a rigorously conducted pragmatic trial with an embedded qualitative study. METHODS/DESIGN: We will recruit 500 patients who have been diagnosed with neck pain in primary care, who have continued to experience neck pain for at least three months with 28% minimum cut-off score on the Northwick Park Neck Pain Questionnaire (NPQ). We will exclude patients with serious underlying pathology, prior cervical spine surgery, history of psychosis, rheumatoid arthritis, ankylosing spondylitis, osteoporosis, haemophilia, cancer, HIV or hepatitis, or with alcohol or drug dependency currently or in the last 12 months, or actively pursuing compensation or with pending litigation.The York Trials Unit will randomly allocate participants using a secure computer-based system. We will use block randomisation with allocation to each intervention arm being unambiguously concealed from anyone who might subvert the randomisation process.Participants will be randomised in equal proportions to Alexander Technique lessons, acupuncture or usual care alone. Twenty 30-minute Alexander Technique lessons will be provided by teachers registered with the Society of Teachers of the Alexander Technique and twelve 50-minute sessions of acupuncture will be provided by acupuncturists registered with the British Acupuncture Council. All participants will continue to receive usual GP care.The primary outcome will be the NPQ at 12 months, with the secondary time point at 6 months, and an area-under-curve analysis will include 3, 6 and 12 month time-points. Adverse events will be documented. Potential intervention effect modifiers and mediators to be explored include: self-efficacy, stress management, and the incorporation of practitioner advice about self-care and lifestyle. Qualitative material will be used to address issues of safety, acceptability and factors that impact on longer term outcomes. DISCUSSION: This study will provide robust evidence on whether there are significant clinical benefits to patients, economic benefits demonstrating value for money, and sufficient levels of acceptability and safety. TRIAL REGISTRATION: Current Controlled Trials ISRCTN15186354.

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.

Extending specialist palliative care to people with heart failure: semantic, historical and practical limitations to policy guidelines.

This paper explores the continuities and discontinuities in recent policy on the extension of palliative care to people with heart failure in the UK. It focuses on how professionals in cardiology and specialist palliative care negotiate their disciplinary boundaries within the context of these policy moves. It draws out the semantic, historical and practical tensions between the core values of cardiology, with its focus on 'living with heart failure', and specialist palliative medicine, with its focus on 'dying with heart failure'. A focus on negotiation of interdisciplinary boundaries reveals different engagements with notions of dying and palliation rather than simply different disease trajectories. Further, uncertainty about prognosis and the probability of sudden death pose a challenge to two core principles of specialist palliative care: 'open awareness' and 'good death'. We are not suggesting that these differences are insurmountable. Rather, in highlighting these tensions, our aim is to problematise the relationship between policy and practice, as being mediated by negotiations of disciplinary values (culture) within a local context. We conclude by recommending a wider discussion on notions of 'open awareness' and how professionals within different medical disciplines engage with alternate ways of dealing with uncertainty and sudden death as part of human condition. The arguments presented here are based on data and analysis from a larger qualitative study conducted during 2004-2005 in north and central England.

Causal attributions, lifestyle change, and coronary heart disease: illness beliefs of patients of South Asian and European origin living in the United Kingdom.

OBJECTIVE: We examined and compared the illness beliefs of South Asian and European patients with coronary heart disease (CHD) about causal attributions and lifestyle change. METHODS: This was a qualitative study that used framework analysis to examine in-depth interviews. SAMPLE: The study comprised 65 subjects (20 Pakistani-Muslim, 13 Indian-Hindu, 12 Indian-Sikh, and 20 Europeans) admitted to one of three UK sites within the previous year with unstable angina or myocardial infarction, or to undergo coronary artery bypass surgery. RESULTS: Beliefs about CHD cause varied considerably. Pakistani-Muslim participants were the least likely to report that they knew what had caused their CHD. Stress and lifestyle factors were the most frequently cited causes for CHD irrespective of ethnic grouping, although family history was frequently cited by older European participants. South Asian patients were more likely to stop smoking than their European counterparts but less likely to use audiotape stress-relaxation techniques. South Asian patients found it particularly difficult to make dietary changes. Some female South Asians developed innovative indoor exercise regimens to overcome obstacles to regular exercise. CONCLUSION: Misconceptions about the cause of CHD and a lack of understanding about appropriate lifestyle changes were evident across ethnic groups in this study. The provision of information and advice relating to cardiac rehabilitation must be better tailored to the context of the specific needs, beliefs, and circumstances of patients with CHD, regardless of their ethnicity.

Improving the effectiveness of interventions in palliative care: the potential role of qualitative research in enhancing evidence from randomized controlled trials.

Evaluating interventions in palliative care using randomized controlled trials (RCTs) has helped advance the specialty and create an evidence base for the delivery of care. RCTs, however, are notoriously difficult to conduct in palliative care, raising a variety of practical, ethical and moral dilemmas. Mixed-methods research, which combines qualitative research and RCTs, offers a potential solution to these problems. This paper begins by examining the theoretical basis for combining the two approaches, before reviewing the specific role qualitative research could play in planning, conducting and implementing trials. The paper then goes on to explore how palliative care research currently uses the mixed-methods approach, by searching the trials included in six Cochrane Systematic Reviews (n = 146) on the incorporation of qualitative research. Only one trial undertook qualitative research. These findings reflect some of the challenges facing mixed-methods research, which include lack of experience in a research team, the problems of obtaining funding and difficulties in publishing. The paper concludes that while combining qualitative and quantitative research is not a panacea for methodological problems in palliative care research, with careful planning and integration, the approach may enhance the clinical and ethical utility of trial findings, which in turn will improve patient care.

Family support and cardiac rehabilitation: a comparative study of the experiences of South Asian and White-European patients and their carer's living in the United Kingdom.

BACKGROUND: Effective lifestyle modification facilitated by cardiac rehabilitation is known to reduce the occurrence of adverse coronary events and mortality. South Asians have poorer outcomes after a myocardial infarction than the general UK population, but little is known about their experiences of family support, cardiac rehabilitation and lifestyle change. AIMS: To explore the nature of family support available to a sample of South Asian and White-European cardiac patients and to highlight similarities and differences between these groups with regard to cardiac rehabilitation and lifestyle modification. METHODS: Using a qualitative approach, semi-structured interviews (in 1 of 6 languages) were conducted by researchers with; 45 South Asian patients and 37 carers and 20 White-European patients and 17 carers. Interviews were conducted in a home setting, up to eighteen months after discharge from hospital following myocardial infarction, coronary artery bypass surgery or unstable angina. RESULTS: The main themes that emerged related to the provision of advice and information, family support and burden, dietary change and exercise regimes. CONCLUSIONS: Several cultural and ethnic differences were identified between patients and their families alongside similarities, irrespective of ethnicity. These may represent generic characteristics of recovery after a cardiac event. Health professionals should develop a cultural repertoire to engage with diversity and difference. Not every difficulty a person encounters as they try to access appropriate service delivery can be attributed to ethnic background. By improving services generally, support for South Asian populations can be improved. The challenge is to know when ethnicity makes a difference and mediates a person's relationship with service support and when it does not.

Family care-giving and chronic illness: how parents cope with a child with a sickle cell disorder or thalassaemia.

There has been increasing interest in the way parents cope with childhood chronic illness and a shift away from merely describing the 'burdens' of care. An emphasis on coping by introducing ideas such as co-ordinated, accessible and appropriate service delivery as well as empowerment raises important policy and practice issues for public health. This paper, by drawing on qualitative material from a project evaluating service support to families caring for a child with a haemoglobinopathy, examines how parents cope with their caring responsibilities. First, it discusses the general literature on how carers respond to their role, before examining the specific literature dealing with the response of parents who look after a child with a haemoglobinopathy. Second, it presents the empirical accounts of parents who care for a child with a sickle cell disorder (SCD) or thalassaemia within the context of this broader literature. The paper concludes that all parents found caring stressful and demanding, but accept that they have to cope with the situation for the sake of the child. Parents' contact with services is an especially important contributory factor to their ability to cope and parents described how services can both hinder and support their caring role. Appropriate professional support can help reduce stress and facilitate coping by offering information, financial help and emotional support. Unsympathetic responses from professionals, or their incompetence, however, meant that many parents identified service provision as part of the problem, potentially undermining their ability to come to terms with the condition.