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1.
Health Expect ; 26(1): 87-97, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36478049

RESUMO

INTRODUCTION: Children and young people (CYP) with asthma can benefit from reduced exposure to indoor environmental allergens and triggers but may not consistently have avoidance strategies implemented. To inform future interventions to increase trigger and allergen avoidance and enhance asthma control, a greater understanding of the influences on avoidance behaviours is necessary. METHODS: A systematic scoping review was selected to summarize evidence on what influences family uptake of indoor environmental asthma trigger avoidance strategies for CYP with asthma and identify research gaps. Primary studies of any design, including CYP (≤18 years) with asthma, and/or parent-carers, available in English and conducted since 1993, were eligible. Searches included nine databases, hand-searching reference lists and citation searching. FINDINGS: Thirty-three articles were included and are summarized narratively due to heterogeneity. Influences appear complex and multifactorial and include barriers to strategy uptake, health beliefs and personal motivation. Research specifically related to family understanding of allergic sensitisation status and exposure risks, and how these may inform avoidance implementation is required. Patient and public involvement (PPI) was not reported in included articles, although two studies used participatory methods. CONCLUSION: There is limited research on family asthma trigger management, particularly what influences current management behaviours. Variation in families' ability to identify important triggers, understand exposure risk and consistently reduce exposures warrants further exploratory research to explain how families reach avoidance decisions, and what future interventions should aim to address. Further PPI-informed research to address such gaps, could enable theory-based, person-centred interventions to improve the uptake of asthma trigger remediation. PATIENT OR PUBLIC CONTRIBUTION: An asthma-specific PPI group contributed to the decision-making for the funding for the wider project this review sits within. The findings of this scoping review have informed the subsequent phases of the project, and this was discussed with PPI groups (both adult and CYP groups) when proposing the next phases of the project.


Assuntos
Asma , Adolescente , Adulto , Criança , Humanos , Asma/prevenção & controle , Cuidadores , Motivação , Cuidados Paliativos
2.
Artigo em Inglês | MEDLINE | ID: mdl-32560517

RESUMO

Evidence and campaigns highlighting smoking and second-hand smoke risks have significantly reduced smoking prevalence and denormalised smoking in the home in Scotland. However, smoking prevalence remains disproportionally high in socioeconomically disadvantaged groups. Using stigma as a theoretical lens, this article presents a thematic analysis of parents' accounts of attempting to abstain from smoking at home, using nicotine replacement therapy (NRT), in disadvantaged areas of Edinburgh and the Lothians. Smoking stigma, particularly self-stigma, underpinned accounts, with two overarching themes: interplaying barriers and enablers for creation of a smoke-free home and reconceptualisation of the study as an opportunity to quit smoking. Personal motivation to abstain or stop smoking empowered participants to reduce or quit smoking to resist stigma. For those struggling to believe in their ability to stop smoking, stigma led to negative self-labelling. Previously hidden smoking in the home gradually emerged in accounts, suggesting that parents may fear disclosure of smoking in the home in societies where smoking stigma exists. This study suggests that stigma may act both as an enabler and barrier in this group. Reductions in smoking in the home were dependent on self-efficacy and motivations to abstain, and stigma was entwined in these beliefs.


Assuntos
Poder Familiar , Abandono do Hábito de Fumar/psicologia , Estigma Social , Poluição por Fumaça de Tabaco/prevenção & controle , Dispositivos para o Abandono do Uso de Tabaco , Populações Vulneráveis , Adolescente , Adulto , Criança , Pré-Escolar , Redução do Dano , Habitação , Humanos , Lactente , Masculino , Motivação , Poder Familiar/psicologia , Pais/psicologia , Escócia , Autoeficácia , Abandono do Hábito de Fumar/métodos , Prevenção do Hábito de Fumar , Fatores Socioeconômicos , Poluição por Fumaça de Tabaco/efeitos adversos , Adulto Jovem
3.
J Child Neurol ; 35(5): 348-353, 2020 04.
Artigo em Inglês | MEDLINE | ID: mdl-31884868

RESUMO

The objective of this review is to summarize the pharmacology, efficacy, and safety of cerliponase alfa for the treatment of late infantile neuronal ceroid lipofuscinosis type 2 (CLN2). Cerliponase alfa is recombinant human tripeptidyl peptidase 1 enzyme replacement therapy. A phase 1/2 trial established the efficacy and safety of cerliponase alfa for treatment of neuronal ceroid lipofuscinosis type 2. Treatment with intracerebroventricular cerliponase alfa resulted in slower decline of motor and language functions compared with natural history controls. Common adverse events include convulsions, electrocardiography abnormalities, pyrexia, vomiting, and upper respiratory tract infections. Intracerebroventricular device-related adverse events also occur. Cerliponase alfa is the first therapy for neuronal ceroid lipofuscinosis type 2 that targets the disease etiology. Cerliponase alfa is effective in delaying the progression of motor language decline for patients with neuronal ceroid lipofuscinosis type 2.


Assuntos
Dipeptidil Peptidases e Tripeptidil Peptidases/uso terapêutico , Terapia de Reposição de Enzimas/métodos , Lipofuscinoses Ceroides Neuronais/tratamento farmacológico , Proteínas Recombinantes/uso terapêutico , Progressão da Doença , Humanos , Resultado do Tratamento , Tripeptidil-Peptidase 1
4.
Artigo em Inglês | MEDLINE | ID: mdl-33036327

RESUMO

Exposure to second-hand smoke (SHS) in the home is largely associated with socio-economic disadvantage. Disadvantaged parents face specific challenges creating a smoke-free home, often caring for children in accommodation without access to outdoor garden space. Existing smoke-free home interventions largely fail to accommodate these constraints. Innovative approaches are required to address this inequality. In this two-phase study, we engaged with parents living in disadvantaged areas of Edinburgh, Scotland, to explore tailored approaches to creating a smoke-free home and develop and pilot-test an intervention based on their views and preferences. In Phase 1, qualitative interviews with 17 parents recruited from Early Years Centres explored alternative approaches to smoke-free home interventions. In Phase 2, an intervention based on parents' views and preferences was pilot-tested with parents recruited through Early Years and Family Nurse Partnership centres. Seventeen parents took part in an interview to share their views/experiences of the intervention. Data from both study phases were thematically analysed. Phase 1 findings suggested that parents associated nicotine replacement therapy (NRT) with quit attempts but supported the idea of NRT use for temporary abstinence to create a smoke-free home, viewing this as a safer option than using e-cigarettes indoors. In Phase 2, 54 parents expressed an interest in accessing NRT to create a smoke-free home, 32 discussed NRT product choice during a home visit from a smoking adviser, and 20 collected their free NRT prescription from the pharmacy. NRT was used for up to 12 weeks in the home, with ongoing advice available from pharmacy staff. During qualitative interviews (n = 17), parents self-reported successfully creating a smoke-free home, quitting smoking, and reduced cigarette consumption, often exceeding their expectations regarding changes made. The intervention was acceptable to parents, but the multi-step process used to access NRT was cumbersome. Some participants were lost to this process. Parents living in disadvantaged circumstances may benefit from access to NRT for temporary abstinence in the home to assist them to protect their children from SHS exposure. Further research using a more streamlined approach to NRT access is required to determine the feasibility and cost-effectiveness of this approach.


Assuntos
Poluição do Ar em Ambientes Fechados/prevenção & controle , Sistemas Eletrônicos de Liberação de Nicotina/estatística & dados numéricos , Exposição Ambiental/prevenção & controle , Pais/psicologia , Abandono do Hábito de Fumar/métodos , Prevenção do Hábito de Fumar/métodos , Poluição por Fumaça de Tabaco/prevenção & controle , Populações Vulneráveis , Adulto , Criança , Pré-Escolar , Feminino , Habitação , Humanos , Lactente , Masculino , Pesquisa Qualitativa , Escócia/epidemiologia , Dispositivos para o Abandono do Uso de Tabaco
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