ABSTRACT
Autism is a neurodevelopmental condition with a very heterogeneous presentation. Autistic people are more likely to have unmet healthcare needs, making it essential that healthcare professionals are 'autism-aware'. In this article, we provide an overview of how autism presents and use case studies to illustrate how a neurological consultation in an outpatient clinic environment could prove challenging for a autistic person. We suggest how to improve communication with autistic patients in clinic and highlight the importance of a patient-centred and flexible approach.
Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Autistic Disorder/complications , Communication , Delivery of Health Care , Humans , Referral and ConsultationABSTRACT
BACKGROUND: Uptake of colorectal cancer screening programmes needs to be improved or at least maintained in order to achieve projected reductions in mortality and morbidity. Understanding the origins of non-participation in screening is therefore important. OBJECTIVE: To explore the beliefs and experiences of individuals who had not responded either to their screening invitation or reminder. DESIGN: A qualitative study using in-depth interviews with non-participants from England's population-based colorectal cancer screening programme. Data collection and analysis were carried out using a grounded theory approach, with an emphasis on the constant comparison method, and continued until saturation (27 interviews). FINDINGS: The interviews provided an in-depth understanding of a range of reasons and circumstances surrounding non-participation in screening, including contextual and environmental influences as well as factors specific to the screening test. Non-participation in screening was not necessarily associated with negative attitudes towards screening or a decision to not return a kit. Reasons for non-participation in screening included not feeling that participation is personally necessary, avoiding or delaying decision making, and having some degree of intention to take part but failing to do so because of practicalities, conflicting priorities or external circumstances. Beliefs, awareness and intention change over time. DISCUSSION AND CONCLUSIONS: A range of approaches may be required to improve screening uptake. Some non-participants may already have a degree of intention to take part in screening in the future, and this group may be more responsive to interventions based on professional endorsement, repeat invitations, reminders and aids to making the test more practical.
Subject(s)
Colorectal Neoplasms/diagnosis , Early Detection of Cancer , Health Knowledge, Attitudes, Practice , Mass Screening/methods , Occult Blood , Aged , England , Female , Grounded Theory , Health Behavior , Humans , Interviews as Topic , Male , Middle Aged , Qualitative ResearchABSTRACT
Adherence to a gluten-free diet is the mainstay of treatment for coeliac disease. Non-adherence is common as the diet is restrictive and can be difficult to follow. This study aimed to determine the rates of intentional and inadvertent non-adherence in adult coeliac disease and to examine the factors associated with both. A self-completion questionnaire was mailed to adult coeliac patients identified from the computer records of 31 family practices within the North East of England. We received 287 responses after one reminder. Intentional gluten consumption was reported by 115 (40%) of respondents. 155 (54%) had made at least one known mistaken lapse over the same period and 82 (29%) reported neither intentional nor mistaken gluten consumption. Using logistic regression analysis, low self-efficacy, perceptions of tolerance to gluten and intention were found to be independently predictive of intentional gluten consumption. A statistical model predicted 71.8% of cases reporting intentional lapses. Intentional non-adherence to the GFD was found to be common but not as frequent as inadvertent lapses. Distinguishing the factors influencing both intentional and inadvertent non-adherence is useful in understanding dietary self-management in coeliac disease.
Subject(s)
Celiac Disease/diet therapy , Diet, Gluten-Free/statistics & numerical data , Intention , Patient Compliance/statistics & numerical data , Cross-Sectional Studies , Diet, Gluten-Free/methods , England , Female , Humans , Male , Middle Aged , Self Efficacy , Surveys and QuestionnairesABSTRACT
BACKGROUND: Non-adherence to drug therapy is common in Inflammatory Bowel Disease (IBD). Patients' beliefs about treatment have an important influence on adherence. An in-depth understanding of this area is, therefore, important for patient-centred care. The aim of the study was to assess patients' perspectives and beliefs about their medication and to determine how this relates to medicine taking and other related health behaviour as part of a larger qualitative study on health care related behaviour in patients with IBD. METHODS: Individual semi-structured interviews and focus groups. An iterative approach following principles of grounded theory was applied to data collection and analysis. RESULTS: Main emerging themes were: balance of perceived necessity versus concerns, perceived impact of symptoms and willingness to self-manage medication. There was a clear distinction made between steroids and other preparations. Concerns included the fear of both short and long-term side-effects (mainly steroids), uncertainties about drug interactions and development of long-term immunity. Adapting to and accepting medication use was linked to acceptance of IBD. CONCLUSION: A concordant approach including flexible and pro-active support as well as accurate information is important in assisting patients with IBD to self-manage their medication effectively. Health professionals should be aware that attitudes to medicine taking and other related behaviours may be medicine specific and change over time.
Subject(s)
Health Knowledge, Attitudes, Practice , Inflammatory Bowel Diseases/drug therapy , Inflammatory Bowel Diseases/psychology , Patient Compliance/psychology , Patient Compliance/statistics & numerical data , Quality of Life , Adult , Attitude to Health , Female , Focus Groups , Humans , Interviews as Topic , Male , Middle Aged , Self Care/psychologyABSTRACT
This article reports on the experiences of individuals living with IBD and identifies a range of coping strategies used by them. Qualitative data from 15 individual interviews and three focus groups were analysed using a grounded theory approach. The main focus is on the emergent core concept of 'health-related normality'. A theoretical framework is proposed to explain how individuals with IBD assess their health-related normality, their fight to maintain it and their need to retain the appearance of normality to others. It is concluded that individuals maintain their health-related normality along certain time and context sensitive continuums rather than fitting into a distinct typology.