Dataset Information

Patients' accounts of living with and managing inflammatory bowel disease in rural Southern New Zealand: a qualitative study.

ABSTRACT: OBJECTIVE:To explore how adults living with inflammatory bowel disease (IBD) in rural New Zealand manage their condition and engage with healthcare providers. DESIGN:Qualitative exploratory design with semi-structured interviews analysed thematically. SETTING AND PARTICIPANTS:Interviews were conducted with 18 people living with IBD in the Otago region of the South Island. RESULTS:Five important constructs were identified: (1) journey to confirming and accepting diagnosis; (2) importance of the relationship with the healthcare team; (3) support from others; (4) learning how to manage IBD and (5) care at a distance-experiences of rurality. Pathways to confirming diagnosis involved two contrasting journeys: a long and slow process where diagnosis remained unclear for a prolonged period, and a more acute process where diagnosis typically came as a shock. Central to the acceptance process was acknowledging the chronicity of the condition, which involved feelings of grief but also the fear of judgement and stigma. Building a strong relationship with the specialist was central to medical management, particularly in the initial stage following diagnosis. Support from others was critical, enabling participants to progress through acceptance of the disease and developing confidence in its everyday management. Participants shared different strategies on how to manage IBD, describing a 'trial and error' process of 'finding what is right' at different stages of the condition. Managing IBD rurally involved challenges of access to specialist care, with perceptions of delayed referrals and concerns about disparities in specialist access compared with urban counterparts. Rural living also had financial implications-cost of time and cost of mobilising resources for long travels to the urban centre for treatments. CONCLUSIONS:Findings from this study provide a rich understanding of the complex health journeys of people living with IBD and the challenges of managing the condition rurally.

SUBMITTER: Richard L

PROVIDER: S-EPMC7662529 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Patients' accounts of living with and managing inflammatory bowel disease in rural Southern New Zealand: a qualitative study.

Richard Lauralie L Noller Geoff G Derrett Sarah S Sullivan Trudy T Doolan-Noble Fiona F McCombie Andrew A Schultz Michael M Ho Christine C Stokes Tim T

BMJ open 20201112 11

<h4>Objective</h4>To explore how adults living with inflammatory bowel disease (IBD) in rural New Zealand manage their condition and engage with healthcare providers.<h4>Design</h4>Qualitative exploratory design with semi-structured interviews analysed thematically.<h4>Setting and participants</h4>Interviews were conducted with 18 people living with IBD in the Otago region of the South Island.<h4>Results</h4>Five important constructs were identified: (1) journey to confirming and accepting diagn ...[more]

PMID: 33184085

Similar Datasets

Project description:BackgroundFor women with gestational diabetes mellitus (GDM) poor dietary choices can have deleterious consequences for both themselves and their baby. Diet is a well-recognised primary strategy for the management of GDM. Women who develop GDM may receive dietary recommendations from a range of sources that may be inconsistent and are often faced with needing to make several dietary adaptations in a short period of time to achieve glycaemic control. The aim of this study was to explore how women diagnosed with GDM perceive dietary recommendations and how this information influences their dietary decisions during pregnancy and beyond.MethodsWomen diagnosed with GDM before 30 weeks' gestation were purposively recruited from two GDM clinics in Auckland, New Zealand. Data were generated using semi-structured interviews and thematic analysed to identify themes describing women's perceptions and experiences of dietary recommendations for the management of GDM.ResultsEighteen women from a diverse range of sociodemographic backgrounds participated in the study. Three interconnected themes described women's perceptions of dietary recommendations and experiences in managing their GDM through diet: managing GDM is a balancing act; using the numbers as evidence, and the GDM timeframe. The primary objective of dietary advice was perceived to be to control blood glucose levels and this was central to each theme. Women faced a number of challenges in adhering to dietary recommendations. Their relationships with healthcare professionals played a significant role in their perception of advice and motivation to adhere to recommendations. Many women perceived the need to follow dietary recommendations to be temporary, with few planning to continue dietary adaptations long-term.ConclusionsThe value of empathetic, individually tailored advice was highlighted in this study. A greater emphasis on establishing healthy dietary habits not just during pregnancy but for the long-term health of both mother and baby is needed.

Project description:BACKGROUND:Although early detection and management of excess rates of gestational diabetes mellitus (GDM) among Indigenous women can substantially reduce maternal and offspring complications, current interventions seem ineffective for Indigenous women. While undertaking a qualitative study in a rural community in Northland, New Zealand about the complexities of living with diabetes, we observed a common emotional discourse about the burden of diabetic pregnancies. Given the significance of GDM and our commitment to give voice to Indigenous M?ori women in ways that could potentially inform solutions, we aimed to explore the phenomenon of GDM among M?ori women in a rural context marked by high area-deprivation. METHOD:A qualitative and Kaupapa M?ori methodology was utilised. A sub-sample of women (n?=?10) from a broader study designed to improve type 2 diabetes mellitus (T2DM) who had experienced GDM or pre-existing diabetes during pregnancy and/or had been exposed to diabetes in utero were interviewed. Participants in the broader study were recruited via the local primary care clinic. Experiences of GDM, in relation to their current T2DM, was sought. Narrative data was analysed for themes. RESULTS:Intergenerational experiences informed perceptions that GDM was an inevitable heritable illness that "just runs in the family." The cumulative effects of deprivation and living with GDM compounded the complexities of participant' lives including perceptions of powerlessness and mental health deterioration. Missed opportunities for health services to detect and manage diabetes had ongoing health consequences for the women and their offspring. Positive relationships with healthcare providers facilitated management of GDM and helped women engage with self-management. CONCLUSION:M?ori women living with T2DM were clear that health providers had failed to intervene in ways that would have potentially slowed or prevented progression of GDM to T2DM. Participants revealed missed opportunities for appropriate diagnostic testing, treatment and health promotion programmes for GDM. Poor collaboration between health services and social services meant psychosocial issues were rarely addressed and the cycle of intergenerational poverty and disadvantage prevailed. These data highlight opportunities for extended case management to include wh?nau (family) engagement, input from social services, and evidence-based medicine and/or long-term management and prevention of T2DM.

Project description:IntroductionThere is a high degree of perceived stigma among adults with inflammatory bowel disease (IBD), with up to 84% considering a social stereotype against them due to their condition. This may negatively impact their treatment adherence and quality of life, as well as practical issues such as gaining urgent access to public bathroom facilities. It has been demonstrated that higher public knowledge levels can reduce public stigma, yet little is known about the general level of understanding of IBD in the community. A study was performed to ascertain the public knowledge levels of IBD in Christchurch, New Zealand, using a validated assessment tool.ObjectivesThe aims of this study were to implement a validated knowledge survey (IBD-KID2) among members of the general public in Christchurch, New Zealand, and to assess the level of understanding about IBD.MethodsRecruitment took place at a Health Research and Education showcase event at the University of Otago (Christchurch), which is a free event open to members of the public. All people over the age of 8 years were invited to participate. Demographic information was collected and the disease-specific knowledge assessment survey IBD-KID2 completed by all participants consenting to the research.ResultsOne hundred people consented to the study, and the mean age 39.9 was years (SD 20, range 12-82 years). Of these 100 participants, 71 were female and 71 had a post-secondary education. Twelve participants had a family history of IBD. The mean IBD-KID2 score was 8.7 (SD 2.9), equal to a percentage total score of 58%. No independent variable was found to be significantly associated with IBD-KID2 scores. The frequency of correct answers showed knowledge deficiencies in the areas of nutrition, treatment, growth, and the cause of IBD.ConclusionsThis study highlighted knowledge deficiencies among members of the general public in Christchurch, New Zealand. These topics may be addressed with awareness campaigns in order to maximise community support for adults and children with IBD.

Dataset Information

Patients' accounts of living with and managing inflammatory bowel disease in rural Southern New Zealand: a qualitative study.

Publications

Patients' accounts of living with and managing inflammatory bowel disease in rural Southern New Zealand: a qualitative study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets