'Complex' but coping: experience of symptoms of tuberculosis and health care seeking behaviours--a qualitative interview study of urban risk groups, London, UK.

BACKGROUND: Tuberculosis awareness, grounded in social cognition models of health care seeking behaviour, relies on the ability of individuals to recognise symptoms, assess their risk and access health care (passive case finding). There is scant published research into the health actions of 'hard-to-reach' groups with tuberculosis, who represent approximately 17% of the London TB caseload. This study aimed to analyse patients' knowledge of tuberculosis, their experiences of symptoms and their health care seeking behaviours. METHODS: Qualitative interviews were conducted with 17 participants, predominantly homeless and attending a major tuberculosis centre in London, UK. Most had complex medical and social needs including drug and alcohol use or immigration problems affecting entitlement to social welfare. Analytical frameworks aimed to reflect the role of broader social structures in shaping individual health actions. RESULTS: Although participants demonstrated some knowledge of tuberculosis their awareness of personal risk was low. Symptoms commonly associated with tuberculosis were either not recognised or were attributed to other causes for which participants would not ordinarily seek health care. Many accessed health care by chance and, for some, for health concerns other than tuberculosis. CONCLUSIONS: Health education, based on increasing awareness of symptoms, may play a limited role in tuberculosis care for populations with complex health and social needs. The findings support the intensification of outreach initiatives to identify groups at risk of tuberculosis and the development of structured care pathways which support people into prompt diagnosis and treatment.

Establishing a new service role in tuberculosis care: the tuberculosis link worker.

AIM: This paper is a report of a study to develop a social outreach model of care, including the role of a link worker in developing collaborative care pathways, for marginalized groups with tuberculosis. BACKGROUND: Social risk factors such as homelessness and substance misuse are associated with poor treatment outcomes. Models of interprofessional practice to address the health and social care of patients are needed to improve outcomes. METHODS: A process evaluation involving a prospective cohort study of 100 patients and interviews with eight agencies involved in their care was conducted in London between January 2003 and April 2005. Outcome measures included a profile of patient need to guide service development; referrals to care providers; goal attainment; social improvement and treatment outcomes; and agencies' views on the benefits of link working. FINDINGS: The median age of the sample was 32.4 years and 62% were males. Reasons for referral to the link worker included housing need (56%); welfare benefits (42%); immigration (29%) and clinical management issues (28%). One-third of the patients were referred to other agencies. Goals, as agreed in the care plan, were attained totally or partially for 88% (59/67) of patients and 78% of patients successfully completed treatment. Barriers to attaining goals included service criteria which excluded some groups of patients and, in some cases, a patient's inability to follow a course of action. CONCLUSION: Link workers can mitigate some of the social risk factors that complicate the treatment of tuberculosis by enabling integrated health and social care.

Negotiating mothering against the odds: gastrostomy tube feeding, stigma, governmentality and disabled children.

Using the findings of a small-scale qualitative investigation based on in-depth interviews with mothers attending a tertiary paediatric referral centre in London, this paper explores professional and parental discourses in relation to gastrostomy tube feeding and disabled children. Detailed accounts are given of women's struggles to negotiate their identities, and those of their children, within dominant discourses of mothering and child-centredness. Constructions of feeding practices as coercive conflict with normative expectations of 'good mothering' and the 'idealised autonomous' child. Although notions of 'stigmatised identities' featured in women's accounts of feeding children, both orally and by tube, stigma fails to explain why mothers are rendered culpable within expert discourses. Prevailing theories of stigma and coping are interrogated and judged to be more descriptive than explanatory. Felt stigma is posited as an aspect of governmentality.

The social context of tuberculosis treatment in urban risk groups in the United Kingdom: a qualitative interview study.

OBJECTIVES: There is scant qualitative research into the experiences of tuberculosis (TB) treatment in urban risk groups with complex health and social needs in the UK. This study aimed to describe the social context of adherence to treatment in marginalized groups attending a major TB centre in London. METHODS: A qualitative cross-sectional study was performed using semi-structured interviews with patients receiving treatment for TB. Analytical frameworks aimed to reflect the role of broader social structures in shaping individual health actions. RESULTS: There were 17 participants; the majority were homeless and had complex medical and social needs, including drug and alcohol use or immigration problems affecting entitlement to social welfare. Participants rarely actively chose not to take their medication, but described a number of social and institutional barriers to adherence and their need for practical support. Many struggled with the physical aspects of taking medication and the side effects. Participants receiving directly observed therapy (DOT) reported both positive and negative experiences, reflecting the type of DOT provider and culture of the organization. CONCLUSIONS: There is a need for integrated care across drug, alcohol, HIV, and homeless services in order to address the complex clinical co-morbidities and social needs that impact on the patient's ability to sustain a course of treatment.

Lessons for tuberculosis from scrutiny of HIV/AIDS and Malaria UK Parliamentary Questions.

OBJECTIVES: To identify whether parliamentary scrutiny, in the form of Written Parliamentary Questions (WPQs), has any significant impact on the UK government's stated aid priorities and whether, by refining the approach that MPs with an interest in TB take to scrutinising the government on its aid priorities, more resources could be secured for TB. METHODS: We downloaded 19,234 Written Parliamentary Questions directed at the Department for International Development posed by Members of Parliament between June 2001 and September 2014. We categorised questions by theme, party of questioner, geographical area, date and government. We then identified questions which specifically referenced HIV, TB and Malaria, or the Global Fund to Fight Aids, TB and Malaria. Analyses were conducted on each of these categorisations to identify trends which could account for differences in government funding between the three diseases. RESULTS: A significantly greater number of questions were posed on HIV than on TB and Malaria. These questions were more likely to reference a specific geographical area, and come from a wider group of MPs. A broadly equivalent number of questions were asked on TB and Malaria although there were differences between the parties of the MPs tabling questions. We also identified a significant fall in the number of WPQs tabled from the Labour government of 2005-2010 and the Coalition Government of the present day. CONCLUSION: High volumes of WPQs targeting specific policy areas or geographical locations can play a role in increasing political commitment within government towards a certain disease or condition, however other factors, including high-level MP champions and party policy, can play an equally significant role. Nonetheless, evidence suggests that a broad base of political support (as manifested through WPQs) is important to motivating a government response to a health issue and that the TB community should devote more effort to mobilising this wide political support.

A population search filter for hard-to-reach populations increased search efficiency for a systematic review.

OBJECTIVES: This article discusses how hard-to-reach population groups were conceptualized into a search filter. The objectives of this article were to (1) discuss how the authors designed a multistranded population search filter and (2) retrospectively test the effectiveness of the search filter in capturing all relevant populations (eg, homeless people, immigrants, substance misusers) in a public health systematic review. STUDY DESIGN AND SETTING: Systematic and retrospective analysis via a case study. Retrospective analysis of the search filter was conducted by comparing the MEDLINE search results retrieved without using the search filter against those retrieved with the search filter. A total of 5,465 additional results from the unfiltered search were screened to the same criteria as the filtered search. RESULTS: No additional populations were identified in the unfiltered sample. The search filter reduced the volume of MEDLINE hits to screen by 64%, with no impact on inclusion of populations. CONCLUSIONS: The results demonstrate the effectiveness of the filter in capturing all relevant UK populations for the review. This suggests that well-planned search filters can be written for reviews that analyze imprecisely defined population groups. This filter could be used in topic areas of associated comorbidities, for rapid clinical searches, or for investigating hard-to-reach populations.

Why parents of children with neurodevelopmental disabilities requiring gastrostomy feeding need more support.

This was a qualitative research study of parental perceptions of gastrostomy feeding before surgery using an in-depth interview in the parental home to examine the factors parents consider when gastrostomy feeding is recommended and to identify the need for support. Participants were a subgroup of families taking part in a larger research study evaluating gastrostomy placement in children with severe neurodevelopmental disabilities at a major paediatric centre in the UK between 1998 and 2000. Parents of 22 children (13 males, nine females; mean age 4 years 8 months [SD 3 years 6 months]; age range 1 year 1 month to 13 years 3 months) were interviewed. Categories of disability were: cerebral palsy (n=10), a syndrome of chromosomal or genetic origin (n=10), and unconfirmed diagnoses (n=2). Thirteen children were recommended for a gastrostomy and seven were recommended for a gastrostomy with an antireflux procedure. Four families were undecided about surgery at the time of the interview, two of whom went ahead with the procedure some time later. Parental accounts of oral and tube feeding were both contradictory and ambivalent. Concerns about the loss of oral feeding, which was regarded as having a range of psychosocial effects for the child and family, were raised. Both oral and tube feeding have multiple meanings for parents and signify more than obtaining an adequate nutritional intake. The need for additional information about the risks and benefits of gastrostomy and how tube feeding fits into the context of everyday life were dominant themes. The biomedical emphasis on health and weight-gains may fail to reflect parental concerns about tube and oral feeding. There is a need for greater practical and emotional support for families feeding children with severe disabilities.