Gillian M. Craig

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.

Nutritional management of children with cerebral palsy : a practical guide

Correction to: European Journal of Clinical Nutrition (2013) 67, S21–S23; doi:10.1038/ejcn.2013.227 Since the publication of this supplement, it has been noticed that the author affiliations were not included in the Summary and Recommendations article. The correct author affiliations are shown above, and the online html and PDF have been amended.

Tuberculosis stigma as a social determinant of health: a systematic mapping review of research in low incidence countries

Tuberculosis (TB)-related stigma is an important social determinant of health. Research generally highlights how stigma can have a considerable impact on individuals and communities, including delays in seeking health care and adherence to treatment. There is scant research into the assessment of TB-related stigma in low incidence countries. This study aimed to systematically map out the research into stigma. A particular emphasis was placed on the methods employed to measure stigma, the conceptual frameworks used to understand stigma, and whether structural factors were theorized. Twenty-two studies were identified; the majority adopted a qualitative approach and aimed to assess knowledge, attitudes, and beliefs about TB. Few studies included stigma as a substantive topic. Only one study aimed to reduce stigma. A number of studies suggested that TB control measures and representations of migrants in the media reporting of TB were implicated in the production of stigma. The paucity of conceptual models and theories about how the social and structural determinants intersect with stigma was apparent. Future interventions to reduce stigma, and measurements of effectiveness, would benefit from a stronger theoretical underpinning in relation to TB stigma and the intersection between the social and structural determinants of health.

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 patients ability to sustain a course of treatment.

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

BackgroundTuberculosis 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.MethodsQualitative 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.ResultsAlthough 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.ConclusionsHealth 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.

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.

Psychosocial aspects of feeding children with neurodisability

The psychosocial support needs of parents considering a gastrostomy feeding tube for their disabled child are often overlooked, yet there is a growing body of evidence that attests to the decisional conflicts parents, often mothers, experience. This may be in addition to the stress associated with feeding a disabled child. The support needs of families and caregivers should be assessed, including the values parents attach to oral and tube feeding. Structured support should be embedded within the care pathway and both professionals, and service users, with appropriate training should be identified to ensure parental information needs, and any emotional, practical and financial issues are addressed.

Minding the gap and moving forward in children's long-term conditions: A vital role for health psychology

Children with a long-term condition and their families are confronted with multiple biopsychosocial challenges. In this editorial,weoutline the scope of theproblem and then look at some examples of interventions for children with a long-term condition and how health psychology can inform and influence these. Health psychology theories are often not very well applied or reported, and there is considerable scope for more health psychology input in this area (Prestwich et al., 2014). We discuss relevant issues and suggest directions for future research in which health psychologists might apply subjectspecific theory and knowledge to further research and practice in the paediatric domain. One in 10 children will develop a long-term condition that limits their daily life substantially and demands extended care, supervision, and self-management strategies (Yeo & Sawyer, 2005). These conditions include diabetes, neurodegenerative conditions, such as multiple sclerosis (MS), cancer, sickle cell disease, asthma, obesity, and chronic pain. The first two conditions are drawn on in this editorial as examples of long-term conditions, but many of the issues raised apply equally to other conditions. A recent study showed that the prevalence of at least one long-term condition over a 6year period was >50% during childhood (Van Cleave, Gortmaker, & Perrin, 2010). In addition to experiencing a poorer quality of life (Moreira et al., 2013), evidence suggests that children and adolescents with long-term conditions have significantly higher rates of mental health problems compared to healthy children (Ferro & Boyle, 2015; Pinquart & Shen, 2011). Chronic physical health concerns in children and young people (6to 20year-olds) also have a significant impact on parental stress and family functioning (Lewandowski, Palermo, Stinson, Handley, & Chambers, 2010) and commonly imply a substantial economic load for families (Groenewald, Essner, Wright, Fesinmeyer, & Palermo, 2014). Themajority of these conditions require daily self-management including medication administration and dietary and physical activity requirements. A recent WHO report (Davies, 2012) called for more research into patients’ needs, and into potential healthcare service interventions to support children and young people (1to 20-year-olds) with a long-term condition. Children with a long-term condition have been frequently overlooked in the health psychology literature, and little research has directly and systematically drawn fromhealth psychology theories. For example, limited knowledge exists regarding behavioural methods for managing symptoms and disease progression in conditions with severe degenerative consequences for children such as MS. Whilst there is no cure for this condition, physical activity has been shown to alleviate MS symptoms such as mobility limitations, fatigue, pain, and depression, which then improve children’s quality of life (Charvet et al., 2014). In fact, children with MS, who reported greater amounts of moderate physical activity, had fewer fatigue symptoms and smaller lesions in the brain

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 governments 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.

Erratum: Nutritional management of children with cerebral palsy: A practical guide (European Journal of Clinical Nutrition (2013) 67 (S21-S23) DOI: 10.1038/ejcn.2013.227)

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