Promoting family-focused approaches within adult drug services: the potential of the 'Senses Framework'.

BACKGROUND: Policies across countries promote family-focused engagement with adult drugs services however this is rarely offered routinely and relationships with carers are often poor. Research in mental health and older people's services suggests that improving the relationships between carers and service providers is fundamental to enhancing the quality of services. One example is the Senses Framework which assesses the extent to which services are relationship-centred and provides deeper insight into the areas that require further improvement. The aim of this paper is to establish the extent to which relationship-centred care, as defined by the Senses Framework, is expressed in the interactions between carers, services providers and policy makers in adult drug service settings. METHODS: A qualitative study, involving 8 focus groups and 32 individual interviews, was undertaken to explore carers', service providers' and policy makers' experiences and understandings of family and carer involvement with drug services in Scotland, United Kingdom. RESULTS: Tensions exist between carers, service providers and policy makers however there are also areas of commonality in which participants shared experiences and understandings of family and carer involvement with services. Our findings go beyond existing research which focuses largely on describing of the poor quality of relationships between carers, service providers and policy makers by providing a deeper theoretical insight into the nature of these relationships. In so doing, by focusing on the senses of belonging, continuity, security, achievement, purpose and significance, we present the possibility of resolving such tensions. CONCLUSIONS: We think that implementing relationship-centred approaches to care, such as that in the Senses Framework, would provide a greater sense of therapeutic and strategic direction for those delivering and commissioning adult drug services in many countries.

Counselling in the context of fertility and cancer: some sociological insights.

Guidelines issued by a number of bodies highlight the importance of providing information on fertility for young adults receiving a cancer diagnosis. However, previous research has established that provision is uneven and even when information is available, counselling may not be offered. This paper draws on interviews with 15 professionals and 30 younger adults (17-39 years) following a diagnosis of cancer at one tertiary referral centre. Sociological insights highlight the disruption to biographies, plans, identities and personal values involved in acknowledging and responding to the impact of cancer on fertility. Patients and professionals are involved in making difficult decisions in a rapidly evolving situation, in terms of both progression of cancer and advances in treatments for cancer and fertility preservation. It is argued that the constellation of knowledge and skills required does not readily map onto existing professional roles and we suggest that it may be appropriate to provide further training or even to draw on the services of specialist 'oncofertility' counsellors.

Carer involvement with drug services: a qualitative study.

BACKGROUND: Empirical research suggests that involving carers brings benefits to families and services. Consequently, drug-related policy and guidance has increasingly encouraged drug services to involve carers at all levels of service provision. OBJECTIVE: To explore the purpose and scope of carer involvement with adult drug services in North-east Scotland. DESIGN, SETTING AND PARTICIPANTS: A total of 82 participants (20 informal carers, 43 service providers and 19 policy makers) were purposively selected to take part in a qualitative study. Eight focus groups and 32 interviews were conducted between 2007 and 2008. FINDINGS: Three themes were identified through thematic coding: 'Current levels of involvement', 'Use of the term carer' and 'Opportunities for change?' Carer involvement was described as limited, unplanned and unstructured, and consisted largely of information and advice, practical and emotional support, and signposting of services. Although use of the term 'carer' was contested within and across the groups, caring in a drug context was considered the 'same but different' from caring in other contexts. Carers remained sceptical that services actually wanted to involve them in supporting their relative or to offer carers support in their own right. Many service providers and policy makers regarded carer involvement as an aspiration. CONCLUSION: Encouraging carers, service providers and policy makers to reach a shared understanding of caring in a drug context may help translation of policy into practice. However, there is also a fundamental need for drug services to widen the level and type of involvement activities on offer to carers.

Dysarthria following stroke: the patient's perspective on management and rehabilitation.

OBJECTIVE: To explore the perceptions of people with stroke-related dysarthria in relation to the management and rehabilitation of dysarthria. DESIGN: Qualitative semi-structured interviews. SETTING: Community setting Subjects: Twenty-four people with an acquired dysarthria as a result of a stroke in the previous three years. All were living at home at the time of the interview. None exhibited a co-existing impairment (for example, aphasia, apraxia or cognitive impairment) that might have contributed to their communicative experiences. RESULTS: Participants described the considerable efforts they made to maximize their communicative effectiveness prior to, and during, communicative interactions. Activities described included careful articulation and vocal projection as well as more inconspicuous strategies including pre-planning interactions, focused, effortful speech and word substitution. Communication was facilitated by a range of strategies including drafting, rehearsal, manoeuvring and ongoing monitoring and repair. Self-led speech rehabilitation activities were functionally based and often undertaken regularly. Some novel reading-aloud and speaking-aloud activities were described. CONCLUSION: The quantity and nature of inconspicuous, internalized, cognitive activities people with dysarthria engage in to maximize their communicative effectiveness should be considered in evaluating the impact of dysarthria following stroke. Focusing upon externally observable characteristics alone is insufficient. Challenging, functionally relevant, patient-focused activities, materials and targets are more likely to be perceived by the patient as relevant and worthwhile and are thus more likely to ensure adherence to recommended rehabilitation activities.

The impact of stroke-related dysarthria on social participation and implications for rehabilitation.

INTRODUCTION: Each year an estimated 30,000-45,000 UK individuals experience stroke-related dysarthria (impairment of movements required to produce speech). Many will experience persistent dysarthria long after discharge from stroke services. Although we have some insight into the impact of other communication impairments, we have very limited information on the impact of dysarthria on social participation. PURPOSE: To explore the impact of dysarthria on social participation following stroke. METHODS: We report data from in-depth semi-structured interviews with 24 individuals with stroke-related dysarthria. RESULTS: Our findings suggest a complex association between the severity of an individual's dysarthria and the impact on their social participation. Participants' descriptions highlighted their experiences of social participation and isolation. We further suggest that, in some cases, the coping strategies adopted by the participants could be seen to further exacerbate this isolation. These results have important implications for the prioritisation, planning and delivery of therapeutic interventions for people with dysarthria. CONCLUSIONS: The impact of stroke-related dysarthria transcends the physiological impairment to impact upon individuals' social participation, which is key to the process of rehabilitation. The development and evaluation of the effectiveness of an intervention that addresses these impacts is the next challenge for therapists and researchers working in this area.

Ambiguity and uncertainty: the ongoing concerns of male partners of women treated for breast cancer.

As the prevalence of breast cancer increases, survival improves and short stay or outpatient care become the norm, greater numbers of men will be involved in providing care and support for their partners at home. This qualitative study explored the experiences of 26 male partners of women who had completed treatment for breast cancer. A questionnaire was developed in order to collect background information and to provide a pool for further qualitative sampling. One hundred and five questionnaires were distributed, 79 returned and 26 one-to-one interviews were conducted. While negotiating a role in their wives' breast cancer experience the men attempted to find a balance between the ambiguity and uncertainty they experienced and their need to maintain normality. They described feeling 'in limbo' when expectations of being able to move on following their wives treatment were not fulfilled. An understanding of the 'liminal' experience of being a male partner of a woman with breast cancer may help health care professionals to address the ongoing difficulties men encounter. This is important as it is often the male partners who are called upon to provide continued care and support beyond the recognised treatment period.

The work of health visitors and school nurses with children with psychological and behavioural problems.

AIM: This paper is a report of a study to describe the workload of health visitors and school nurses in relation to children and young people with psychological, emotional or behavioural problems, and to identify perceived challenges, obstacles and sources of satisfaction associated with this aspect of their work. BACKGROUND: There is little published information on the work performed by non-specialist community nurses with children and young people who have psychological, emotional and behavioural problems. METHOD: We analysed data from a survey conducted in 2002 - 2003 of 1049 Scottish professionals working with children and young people. Data included quantitative responses and free-text describing the cases seen by respondents. Responses from a sub-sample of 71 health visitors and 100 school nurses were analysed using a combination of descriptive statistics and analysis of themes emerging from the text. FINDINGS: Although community-based nurses saw a relatively small number of children with psychological, emotional or behavioural problems each week, dealing with these problems took up a disproportionate amount of time. The commonest types of problem were self-harm, externalizing behaviours and family difficulties. Few respondents had received specific training in child and adolescent mental health but most expressed a wish to receive such training. CONCLUSION: The work of health visitors and school nurses in caring for children with mental health problems is substantial and important. Development of their public health role should not be at the expense of this important contribution. There is a need for rigorous evaluation of nursing mental health interventions among children and young people.

Patients' experiences of disruptions associated with post-stroke dysarthria.

BACKGROUND: Post-stroke dysarthria rehabilitation should consider social participation for people with dysarthria, but before this approach can be adopted, an understanding of the psychosocial impact of dysarthria is required. Despite the prevalence of dysarthria as a result of stroke, there is a paucity of research into this communication disorder, particularly studies that address the experiences of individuals. The available literature focuses mainly on the perceptions of others or includes groups of mixed aetiologies. AIMS: To investigate the beliefs and experiences of people with dysarthria as a result of stroke in relation to their speech disorder, and to explore the perceived physical, personal and psychosocial impacts of living with dysarthria. METHODS & PROCEDURES: Participants for this qualitative study were recruited from twelve hospitals in Scotland that served both rural and urban populations and afforded opportunity for comparison. Semi-structured, in-depth interviews were carried out over a 12-month period with 24 individuals with varying severity of dysarthria following stroke. The interviews were orthographically transcribed and coded using the NVivo package, which also facilitated identification of patterns using the constant comparative method. OUTCOMES & RESULTS: The results of the study indicate that the effects of dysarthria following stroke extend beyond the physiological characteristics of the impairment. In turn, the resulting communication difficulties lead to changes in self-identity, relationships, social and emotional disruptions, and feelings of stigmatization or perceived stigmatization. The impact of dysarthria was found to be disproportionate to the physiological severity, with participants continually striving to get their speech back to 'normal'. CONCLUSIONS & IMPLICATIONS: The findings provide insight into the psychosocial impact of dysarthria following stroke. Speech and language therapy interventions need to go beyond the speech impairment to address and promote psychosocial well being, reduce the likelihood of feelings of stigmatization and changes in self-identity, irrespective of the severity of dysarthria.

Health visitors' assessments of parent-child relationships: a focus group study.

BACKGROUND: Health visitors (HVs), also known as public health nurses, in the UK provide a universal community-based service to preschool children and their parents. Since they have ongoing supportive contact with almost all mothers and young children they have opportunities to identify problems in the parent-infant relationship: for example during developmental screening, home visits and immunisation clinics. Research into the role of screening for problems in the parent-child relationship in early childhood is sparse and little is known about how such problems are currently identified in the community. OBJECTIVE: To explore the approaches taken by health visitors (HVs) to identifying problems in the parent-child relationship. DESIGN: Focus group study. SETTING: Glasgow, Scotland. PARTICIPANTS: 24 health visitors sampled purposively. RESULTS: Multiple sources of information were used by health visitors in assessing parent-child relationships. These include use of known risk factors, knowledge of local norms, direct observations of behaviour, reflection on the relationship between the parent and health visitor, as well as more intuitive reactions. In many cases understanding difficulties in parent-child relationships involved piecing together a jigsaw over a considerable time span. Continuity of relationships appeared to be crucial in this task. Home visits were described as the most informative setting in which to develop an understanding of the parent-child relationship. PARTICIPANTS reported a lack of formal training in the assessment of parent-child relationships and were keen to obtain more training. CONCLUSIONS: Health visitors use complex strategies to integrate information about parent-child relationships. These strategies are acquired in a variety of ways, but receive little emphasis during basic professional training.

Involving deprived communities in improving the quality of primary care services: does participatory action research work?

BACKGROUND: Participation by communities in improving the quality of health services has become a feature of government policy in the United Kingdom. The aim of the study was to involve a deprived community in the UK in shaping quality improvements of local primary care services. The specific objectives were firstly to create participation by local people in evaluating the primary care services available in the area and secondly to bring about change as a result of this process. METHODS: The methods of participatory action research was used. The study was set in an area of high socio-economic deprivation served by a 'Local Health Care Co-operative' in a peripheral housing estate in Glasgow, Scotland. 72 local residents took part in 11 focus groups: eight of these were with community groups and three with other residents. 372 local residents completed questionnaires either by brief face-to-face interviews (114) or by self or carer completion (258). RESULTS: The study group produced recommendations on physical access to the health centre, time constraints in accessing services and problems encountered in individual relationships with health staff. They also highlighted the social gap between health service providers and the daily life of community residents. Action was taken to bring these recommendations to the attention of the Primary Care Organisation. CONCLUSION: Participatory action research was used to involve a deprived community in the UK in a 'bottom-up' approach aimed at improving quality of local primary care services. Although successful in creating a partnership between academic researchers and lay researchers and participation by local people in evaluating the primary care services available in the area, the impact of the study in terms of immediate action taken over specific issues has been modest. The possible reasons for this are discussed.

Making sense of focus groups.

CONTEXT: This paper provides an overview of the contribution of medical education research which has employed focus group methodology to evaluate both undergraduate education and continuing professional development. PRACTICALITIES AND PROBLEMS: It also examines current debates about the ethics and practicalities involved in conducting focus group research. It gives guidance as to how to go about designing and planning focus group studies, highlighting common misconceptions and pitfalls, emphasising that most problems stem from researchers ignoring the central assumptions which underpin the qualitative research endeavour. PRESENTING AND DEVELOPING FOCUS GROUP RESEARCH: Particular attention is paid to analysis and presentation of focus group work and the uses to which such information is put. Finally, it speculates about the future of focus group research in general and research in medical education in particular.

Promoting participation in cardiac rehabilitation: patient choices and experiences.

BACKGROUND: Cardiac rehabilitation can be an effective means for the secondary prevention of coronary heart disease, but a majority of eligible individuals fail to attend or drop out prematurely. Little research has examined patients' decisions about attendance. AIMS: This paper reports a study examining patients' beliefs and decision-making about cardiac rehabilitation attendance. METHODS: A purposive sample of patients from a mixed urban-rural region of Scotland was studied in 2001 using focus groups. Those who were eligible for a standardized 12-week cardiac rehabilitation programme were compared, with separate focus groups held for individuals with high attendance (>60% attendance; n = 27), high rates of attrition (<60% attendance; n = 9) and non-attendance (0% attendance; n = 8). A total of 44 patients (33 men; 11 women) took part in eight focus groups. RESULTS: Participants from all groups held sophisticated and cohesive frameworks of beliefs that influenced their attendance decisions. These beliefs related to the self, coronary heart disease, cardiac rehabilitation, other attending patients, and health professionals' knowledge base. An enduring embarrassment about group or public exercise also influenced attendance. Those who attended reported increased faith in their bodies, a heightened sense of fitness and a willingness to support new patients who attended. CONCLUSIONS: Reassurance to ease exercise embarrassment should be given before and during the early stages of programmes, and this could be provided by existing patients. Strategies to promote inclusion should address the inhibiting factors identified in the study, and should present cardiac rehabilitation as a comprehensive programme of activities likely to be of benefit to the individual irrespective of personal characteristics, such as age, sex or exercise capacity.

The newfound credibility of qualitative research? Tales of technical essentialism and co-option.

Qualitative research is no longer the "poor relation" to quantitative research that it has been in the past. However, it is important to monitor the manner in which it is becoming incorporated into the mainstream. In this article, the author examines current dangers and challenges by critically reviewing current developments affecting our own research practice. It is argued that technical essentialism (including the co-option of grounded theory) characterizes many responses to qualitative research. The author concludes by suggesting that our own everyday research practice, involving teaching and supervision, provides an opportunity to advance debates about rigor by allowing us to formulate a considered response that respects both the complexities and the unique contribution that qualitative research can make.

Health professionals' views on advance directives: a qualitative interdisciplinary study.

The aim of this study was to discover the views of health professionals in the Greater Glasgow area on advance directives, using semi-structured interviews and focus groups. The twelve participants interviewed included four hospital doctors, four general practitioners (GPs) and four nurses. The six focus groups comprised hospice nurses, GPs, consultant geriatricians, geriatricians in training grades and an interdisciplinary group. Participants were purposively selected to reflect a range of personal experiences with, and attitudes toward, the advance directive using key informants and a short questionnaire. Participants were asked to comment on a specially constructed sample advance directive. All research encounters were recorded, transcribed and analysed using accepted methods in qualitative research. The advance directive was seen as a means of promoting peace of mind in will makers, of allowing carers to honour the patients' wishes and of stimulating communication between all parties. Conversely the advance directive was seen as generating certain risks for the will maker--including those of coercion, misunderstanding, paradoxical overintervention and inadvertent undertreating. A core concern surrounded the issue of 'informedness' in will makers and the ethics of deciding for a future demented self.

Evaluating and synthesizing qualitative research: the need to develop a distinctive approach.

The growing popularity of qualitative research has led to calls for it to be incorporated into the evidence base. It is argued that, in seeking to respond to this challenge, it is important that we recognize the important differences between qualitative and quantitative research and that we take this into account in developing a distinctive approach. This paper outlines the distinctive contribution made by qualitative research with regard to the nature of the curiosity involved, the iterative research process and its treatment of data, analysis and findings. We caution against simply importing templates developed for systematic review of quantitative work, and make suggestions with regard to developing a new model for evaluating and synthesizing qualitative work. The proposed new model takes a critical look at some of the assumptions underpinning systematic review, such as the process of literature searching and selection of relevant material. Although there is potential for checklist items--such as purposive sampling, respondent validation, multiple coding, triangulation and grounded theory--to be used over-prescriptively in evaluating qualitative papers, it is argued that a more creative engagement with these concepts could yield a distinctive approach more appropriate for this type of work. Moreover, we speculate that some of the questions thereby raised might be usefully applied to consideration of established procedures for reviewing quantitative work.

Working on the interface: identifying professional responses to families with mental health and child-care needs.

The gaps between mental health and child-care services constitute a recognised barrier to providing effective services to families where parents have mental health problems. Recent guidance exhorts professionals to coordinate and collaborate more consistently in this area of work. The present study aimed to identify the barriers to inter-professional collaboration through a survey of 500 health and social care professionals. The views of 11 mothers with severe mental health problems whose children had been subject to a child protection case conference were also interrogated through two sets of interviews. The study found that communication problems were identified more frequently between child care workers and adult psychiatrists than between other groups. Communication between general practitioners and child-care workers was also more likely to be described as problematic. While there was some support amongst practitioners for child-care workers to assume a coordinating or lead role in such cases, this support was not overwhelming, and reflected professional interests and alliances. The mothers themselves valued support from professionals whom they felt were 'there for them' and whom they could trust. There was evidence from the responses of child-care social workers that they lacked the capacity to fill this role in relation to parents and their statutory child-care responsibilities may make it particularly difficult for them to do so. The authors recommend that a dyad of workers from the child-care and community mental health services should share the coordinating key worker role in such cases.

Clients or citizens? Some considerations for primary care organisations.

Health services policy in the United Kingdom has given prominence to patient and public participation within a 'modernization' agenda. The superficial consensus in support of lay participation masks a conflicting array of ideologies and theoretical perspectives that colour how this is interpreted. Both client-oriented perspectives and citizenship-oriented approaches are limited by the dynamics of power relationships and decision-making processes within National Health Service structures. Primary care organisations offer the possibility of developing structures for providing closer collaboration between citizens and services. In order to achieve this, however, vague processes of client representation need to be replaced by robust community-based participatory action research models.

Assessing risk: professional perspectives on work involving mental health and child care services.

The assessment of risk is central to work with families where parental mental health needs and child care concerns coexist. This article reports on the findings of three interprofessional focus groups which examined professionals' experiences of working with such families. Specialisation and differing thresholds and codes were identified as factors which contributed to difficulties for practitioners and families and scepticism was expressed concerning the feasibility of a key worker system for this group. The issue of psychiatric diagnosis evoked ambivalent responses and was both valued as offering direction for planning interventions and seen as a means of labelling and excluding individuals from services. The focus group participants were aware that assessing risk placed families under considerable pressure, but practitioners themselves also appeared to experience an emphasis on risk as restrictive.

Preparing for change in the secondary prevention of coronary heart disease: a qualitative evaluation of cardiac rehabilitation within a region of Scotland.

BACKGROUND: Secondary prevention of Coronary Heart Disease (CHD) is often poorly managed and its benefits attained in only a minority of those with CHD. Guidelines developed in the United Kingdom and North America suggest that in future cardiac rehabilitation programmes should provide services through individualized programmes that cater for a wide range of conditions associated with CHD. This will involve substantial and costly changes to current programmes that are mostly standardized and for postmyocardial infarction patients. Based on change theory, this study examined the dynamics, strengths and weaknesses of an existing programme in a Scottish region which was due to undergo the changes suggested by guidelines. AIM: To examine the perceived provision of secondary prevention services for CHD from the perspectives of health professionals within one region in the West of Scotland. METHODS: A purposive sample of 14 health professionals (eight primary and six secondary care health professionals) was selected to cover a range of professional roles including both specialists and generalists. Separate focus group discussions (2) were held with primary care and secondary care professionals. FINDINGS: Whilst the health professionals were enthusiastic about CHD prevention and their involvement, they perceived barriers to the success of the existing service as being complex and multifactorial, including patient, social and service-related factors. Although both groups identified motivation as the most influential personal factor, secondary care staff tended to focus on the importance of patient factors in influencing motivation to change, whereas the primary care staff referred more to the cumulative effects of social and cultural factors. Professionals highlighted weaknesses in the transition between hospital and community-based services with regard to the information flow between primary and secondary care. CONCLUSIONS: Although the study has immediate relevance for the local area, it highlighted issues of more general relevance to cardiac rehabilitation programme development and intersectoral working, such as communications and role perceptions in multi-professional working and the need to adapt services to local socio-economic conditions.