Gill Highet

Archetypal trajectories of social, psychological, and spiritual wellbeing and distress in family care givers of patients with lung cancer: secondary analysis of serial qualitative interviews

Objective To assess if family care givers of patients with lung cancer experience the patterns of social, psychological, and spiritual wellbeing and distress typical of the patient, from diagnosis to death. Design Secondary analysis of serial qualitative interviews carried out every three months for up to a year or to bereavement. Setting South east Scotland. Participants 19 patients with lung cancer and their 19 family carers, totalling 88 interviews (42 with patients and 46 with carers). Results Carers followed clear patterns of social, psychological, and spiritual wellbeing and distress that mirrored the experiences of those for whom they were caring, with some carers also experiencing deterioration in physical health that impacted on their ability to care. Psychological and spiritual distress were particularly dynamic and commonly experienced. In addition to the “Why us?” response, witnessing suffering triggered personal reflections in carers on the meaning and purpose of life. Certain key time points in the illness tended to be particularly problematic for both carers and patients: at diagnosis, at home after initial treatment, at recurrence, and during the terminal stage. Conclusions Family carers witness and share much of the illness experience of the dying patient. The multidimensional experience of distress suffered by patients with lung cancer was reflected in the suffering of their carers in the social, psychological, and spiritual domains, with psychological and spiritual distress being most pronounced. Carers may need to be supported throughout the period of illness not just in the terminal phase and during bereavement, as currently tends to be the case.

The social context of change in tobacco consumption following the introduction of ‘smokefree’ England legislation: A qualitative, longitudinal study

Legislation implemented in England on 1st July 2007 to prohibit smoking in enclosed public places aimed primarily to limit exposure to second-hand smoke, thereby reducing smoking-related morbidity and mortality. We conducted a qualitative study between April 2007 and December 2008 in six contrasting localities in two metropolitan areas in the north and south of England, which examined the impact of the legislation on individuals, families and communities. Using a multi-level longitudinal case study design, we collected data at community and individual levels, from three months prior to the legislation to a year after its enactment through a range of methods, including semi-structured interviews with panel informants and observations in locality settings. Drawing on theoretical understandings of the relationship between structure, agency and practice, this paper examines the social and cultural contexts of change in tobacco consumption. Observations in a variety of community settings identified reduced smoking in public places post-legislation. More than half of panel informants reported decreased consumption at one year post-legislation; a minority had quit, maintained or increased their smoking levels. The dominant pattern of reduced consumption was attributed primarily to constraints imposed by the legislation. This suggests that the law may have provided an impetus for some smokers to cut down or quit. Smoking behaviour was, however, strongly influenced by the social networks in which smokers were embedded, indicating that, while individuals had the power to act, any changes they made were largely shaped by social structural factors. Our findings support the need for a comprehensive tobacco control strategy that takes account of the complex array of contextual factors that constrain and enable smoking.

Alcohol and cannabis: Young people talking about how parents respond to their use of these two drugs

In recent years, there has been increasing concern over rising levels of alcohol and cannabis use among young people. This paper reports findings from a qualitative investigation of young peoples cannabis-related beliefs and behaviour. Fifty-nine boys and girls aged 13 to 15 years were interviewed, mostly in self-selected friendship pairs, in six contrasting locations in east central Scotland. This paper explores how young people talked about their parents’ responses, actual and anticipated, to knowledge of their alcohol and cannabis use. These accounts suggest three similar sets of responses for both alcohol and cannabis, but one significant difference. Some young people reported parents taking a prohibitive approach, others reportedly responded with varying degrees of passive tolerance. In the final set of responses, relating mostly to alcohol, many young people reported their parents talking openly and negotiating boundaries around their drinking. This approach appeared to be largely effective in helping them to develop a responsible approach to alcohol. By contrast, cannabis was rarely talked about openly, becoming instead the subject of speculation and assumption. The paper concludes that supporting parents openly to discuss their childrens actual or potential cannabis use before it begins or before it becomes problematic is an important step in helping to reduce the harms associated with misuse of cannabis.

The re-shaping of the life-world: male British Bangladeshi smokers and the English smoke-free legislation

Objective. To explore how male Bangladeshi smokers adapted to the English smoke-free legislation. Design. We draw on data derived from the Evaluation of Smoke-free England (ESME), a qualitative, longitudinal study conducted between 2007 and 2008 in two English metropolitan areas. Repeat interviews (n=34) were conducted before and after the legislation with 15 male Bangladeshi panel informants and from two focus groups: one with Bangladeshi men and the other with Bangladeshi women. Results. Bangladeshi smokers who participated in this study had largely accommodated to the smoke-free legislation and most had reduced their consumption of cigarettes, albeit to a modest degree. However, at the same time some Bangladeshi smokers appeared to have increased their use of shisha, a popular alternative method of smoking tobacco in this community. Smoke-free legislation also had an impact on the social and cultural forces that shape smoking behaviour in this group. In particular, family homes continued to be a key space where tobacco is consumed, although the legislation may have helped to shift the balance in favour of forces that oppose smoking and against enduring cultural pro-smoking norms. Smoking in public was also less socially acceptable, especially in the vicinity of local mosques and at community events. In some older groups, however, smoking remains a deeply embedded social habit which can undermine smokers’ efforts to quit. Conclusion. For maximum impact, tobacco control interventions aimed at whole populations may need to be supplemented by culturally sensitive measures in local areas where there is a high concentration of Bangladeshi people. Similar considerations may apply to other minority communities with a high prevalence of smoking.

Phase 2 Randomised Controlled Trial and Feasibility Study of Future Care Planning in Patients with Advanced Heart Disease

Future Care Planning (FCP) rarely occurs in patients with heart disease until close to death by which time the potential benefits are lost. We assessed the feasibility, acceptability and tested a design of a randomised trial evaluating the impact of FCP in patients and carers. 50 patients hospitalised with acute heart failure or acute coronary syndrome and with predicted 12 month mortality risk of >20% were randomly allocated to FCP or usual care for 12 weeks upon discharge and then crossed-over for the next 12 weeks. Quality of life, symptoms and anxiety/distress were assessed by questionnaire. Hospitalisation and mortality events were documented for 6 months post-discharge. FCP increased implementation and documentation of key decisions linked to end-of-life care. FCP did not increase anxiety/distress (Kessler score -E 16.7 (7.0) vs D 16.8 (7.3), p = 0.94). Quality of life was unchanged (EQ5D: E 0.54(0.29) vs D 0.56(0.24), p = 0.86) while unadjusted hospitalised nights was lower (E 8.6 (15.3) vs D 11.8 (17.1), p = 0.01). Qualitative interviews indicated that FCP was highly valued by patients, carers and family physicians. FCP is feasible in a randomised clinical trial in patients with acute high risk cardiac conditions. A Phase 3 trial is needed urgently.

Smoking spaces and practices in pubs, bars and clubs : young adults and the English smokefree legislation

Young adulthood is an important but overlooked period in the development of smoking behaviour. We know little about the impact of smokefree policies on this group. In a secondary analysis of longitudinal, qualitative interview data we explore smoking practices in young adulthood, the role of smoking in the spaces of the night-time economy, and the impact of smokefree legislation. Participants carefully managed their smoking in different spaces in relation to the self they wished to present. This was shaped by the transitional nature of young adulthood. Smoking played a role in constructing time-out periods from the demands of everyday life in a similar way to alcohol use. The restrictions imposed by the smokefree legislation quickly became normal for most; however, the experience of smoking was influenced by the nature and quality of smoking spaces. The re-spatialisation of smoking necessitated by the smokefree legislation may reaffirm processes of social denormalisation and stigmatisation of smoking, whilst simultaneously allowing young adult smokers to produce, in some contexts, a positive, fun, sociable smoker identity.

Future Care Planning for patients approaching end-of-life with advanced heart disease: an interview study with patients, carers and healthcare professionals exploring the content, rationale and design of a randomised clinical trial

Objective To explore the optimal content and design of a clinical trial of an end-of-life intervention for advanced heart disease with patients, carers and healthcare professionals. Design Qualitative interview and focus group study. Setting Community and hospital-based focus groups and interviews. Participants Stable community-dwelling patients, informal carers (PC, n=15) and primary and secondary care based healthcare professionals (HCP, n=11). Results PC highlighted fragmentation of services and difficulty in accessing specialist care as key barriers to good care. They felt that time for discussion with HCP was inadequate within current National Health Service (NHS) healthcare systems. HCP highlighted uncertainty of prognosis, explaining mortality risk to patients and switching from curative to palliative approaches as key challenges. Patient selection, nature of the intervention and relevance of trial outcomes were identified by HCP as key challenges in the design of a clinical trial. Conclusions PC and HCP expressed a number of concerns relevant to the nature and content of an end-of-life intervention for patients with advanced heart disease. The findings of this study are being used to support a phase II randomised clinical trial of Future Care Planning in advanced heart disease.

PLANNING FOR THE FUTURE WITH PATIENTS WHO HAVE ADVANCED HEART DISEASE: DESIGNING A RANDOMISED CLINICAL TRIAL OF ANTICIPATORY CARE

Background Many patients with advanced heart disease have a limited prognosis despite optimal medical, surgical and device therapy. These patients rarely receive coordinated, holistic care that acknowledges their individual needs and those of their informal carers. Aims This study assesses the feasibility of a randomised controlled trial of a complex intervention that incorporates ongoing, holistic care with anticipatory care planning for people with advanced heart disease. Methods We conducted 11 interviews with a diverse sample of healthcare professionals and 2 focus groups comprising 12 patients and 5 carers. Participants were given a previously developed “Future Care Plan” and details of the trial before the interviews/ focus groups. These acted as focal points for discussion. Data were transcribed and analysed using standard software to extract themes related to the rationale and design of a clinical trial of anticipatory care planning in advanced heart disease. Results Patients and carers highlighted fragmentation of services, difficulty in accessing specialist care and inadequate time for future planning and preparation as key barriers to holistic care. A patient-held plan was welcomed. Healthcare professionals identified challenges related to uncertainty of prognosis, explaining mortality-risk to patients, and switching from curative to palliative approaches. These data informed patient selection (a combination of prognostic tools and needs for additional supportive care), the intervention (cardiologist review and nurse-led support delivered though a patient-centred care plan), and clinical trial outcomes that are robust but measurable in a frail population. Conclusions Patients, carers and healthcare professionals share a number of common concerns in relation to providing high quality care for people with advanced heart disease. The findings of this exploratory study are informing the implementation of a phase II randomised clinical trial of an holistic, anticipatory care planning intervention for patients with advanced heart disease in line with good practice in end of life care.