scholarly journals Patients’ accounts of living with and managing inflammatory bowel disease in rural Southern New Zealand: a qualitative study

BMJ Open ◽  
2020 ◽  
Vol 10 (11) ◽  
pp. e041789
Author(s):  
Lauralie Richard ◽  
Geoff Noller ◽  
Sarah Derrett ◽  
Trudy Sullivan ◽  
Fiona Doolan-Noble ◽  
...  
Keyword(s):  
Inflammatory Bowel Disease ◽  
New Zealand ◽  
Bowel Disease ◽  
Healthcare Providers ◽  
Strong Relationship ◽  
Healthcare Team ◽  
Specialist Care ◽  
Structured Interviews ◽  
Urban Centre ◽  
Inflammatory Bowel

ObjectiveTo explore how adults living with inflammatory bowel disease (IBD) in rural New Zealand manage their condition and engage with healthcare providers.DesignQualitative exploratory design with semi-structured interviews analysed thematically.Setting and participantsInterviews were conducted with 18 people living with IBD in the Otago region of the South Island.ResultsFive 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.ConclusionsFindings 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.

scholarly journals Patients’ accounts of living with and managing Inflammatory Bowel Disease in rural Southern New Zealand: a qualitative study

2020 ◽  
Author(s):  
Lauralie Richard ◽  
Geoff Noller ◽  
Sarah Derrett ◽  
Trudy Sullivan ◽  
Fiona Doolan-Noble ◽  
...  
Keyword(s):  
Health Care ◽  
Inflammatory Bowel Disease ◽  
New Zealand ◽  
Health Care Providers ◽  
Bowel Disease ◽  
Care Providers ◽  
Specialist Care ◽  
Structured Interviews ◽  
Urban Centre ◽  
Inflammatory Bowel

ABSTRACTObjectiveTo explore how adults living with Inflammatory Bowel Disease (IBD) in rural New Zealand manage their condition and engage with health care providers.DesignQualitative exploratory design with semi-structured interviews analysed thematically.Setting and participantsInterviews were conducted with 18 people living with IBD in the Otago region of the South Island.ResultsFive important constructs were identified: 1. Journey to confirming and accepting diagnosis; 2. Importance of the relationship with the health care 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’s 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 to 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.ConclusionsFindings 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.STRENGTHS AND LIMITATIONS OF THIS STUDY

scholarly journals A183 TELEHEALTH USE IN RURAL SASKATCHEWAN AND INFLAMMATORY BOWEL DISEASE OUTCOMES

2021 ◽  
Vol 4 (Supplement_1) ◽  
pp. 197-199
Author(s):  
M Patterson ◽  
M Gozdzik ◽  
J Peña-Sánchez ◽  
S Fowler
Keyword(s):  
Health Care ◽  
Inflammatory Bowel Disease ◽  
Health Care Utilization ◽  
Bowel Disease ◽  
Postal Code ◽  
Care Utilization ◽  
Specialist Care ◽  
Disease Characteristics ◽  
Significant Difference ◽  
Inflammatory Bowel

Abstract Background Appropriate management of inflammatory bowel disease (IBD) often requires multiple specialist appointments per year. Living in rural locations may pose a barrier to regular specialist care. Saskatchewan (SK) has a large rural population. Prior to COVID-19, telehealth (TH) in SK was not routinely used for either patient assessment or follow up. Furthermore, TH was exclusively between hospitals and specific TH sites without direct contact using patient’s personal phones. Aims The objective of this study was to assess the differences in demographics, disease characteristics, outcomes, and health care utilization between patients from rural SK with IBD who used TH and those who did not. Methods A retrospective chart review was completed on all rural patients (postal code S0*) with IBD in SK who were followed at the Multidisciplinary IBD Clinic in Saskatoon between January 2018 and February 2020. Patients were classified as using TH if they had ever used it. Information on demographics, disease characteristics, and access to IBD-related health care in the year prior to their last IBD clinic visit or endoscopy was collected. Data was not collected for clinic visits after March 1, 2020 as all outpatient care became remote secondary to the COVID-19 pandemic. Mean, standard deviations, median and interquartile ranges (IQR) were reported. Mann-Witney U and Chi-Square tests were used to determine differences between the groups. Results In total, 288 rural SK IBD patients were included, 30 (10.4%) used TH and 258 (89.6%) did not. Patient demographics were not significantly different between the two groups; although, there was a statistically significant difference in the proportion of ulcerative colitis patients (17% TH vs. 38% non-TH, p=0.02). The percentage of patients with clinical remission was 87% for TH patients and 74% for non-TH patients (p=0.13). There were no significant differences in health care utilization patterns and biochemical markers of disease, including c-reactive protein (CRP) and fecal calprotectin (FCP) (p>0.05). Conclusions Prior to the pandemic, a small percentage of patients with IBD in rural SK ever used TH. A small proportion of UC patients used TH. No significant differences in disease characteristics, outcomes, or health care utilization were identified. Further study is warranted to identify barriers to use of this technology to tailor care to this patient group and improve access to care, especially now as the COVID-19 pandemic has drastically changed the use of virtual care. Funding Agencies None

scholarly journals Disease-Related Knowledge in New Zealand Children with Inflammatory Bowel Disease (IBD) and Their Parents

2021 ◽  
Vol 3 (1) ◽  
pp. 23-28
Author(s):  
Laura Appleton ◽  
Andrew S. Day
Keyword(s):  
Inflammatory Bowel Disease ◽  
New Zealand ◽  
Bowel Disease ◽  
Patient Adherence ◽  
Intervention Strategy ◽  
Specific Knowledge ◽  
Poor Knowledge ◽  
Clinical Consequences ◽  
Inflammatory Bowel ◽  
Disease Specific

Insufficient disease-related knowledge can be a barrier to the effective management of the unpredictable and lifelong course of inflammatory bowel disease (IBD). Patients with chronic illnesses have high non-adherence rates, with direct clinical consequences. While no single intervention strategy can improve the adherence of all patients, the success of attempts to improve patient adherence depends upon the realistic assessment of patients’ knowledge and their understanding of the regimen. The aim of this study was to assess the disease-specific knowledge of the parents and patients with IBD in the South Island of New Zealand, and identify areas of poor knowledge. Families of children diagnosed with IBD were asked to complete the IBD Knowledge Inventory Device (IBD-KID). Patients 10 years and older were asked to participate along with their parents. Of 110 families, 91 responded, with completed questionnaires received from 153 parents and 66 patients. Overall, parents scored significantly higher (13.64 ± 3.88) than their children (10.03 ± 4.07; p < 0.001). Areas of poor knowledge included aspects of treatment (both conventional and alternative), along with long-term disease outcomes. This study has shown clear areas of concern in this population’s disease-specific knowledge of their disease. This should be addressed through targeted education for both the patient and the parents to improve not only their knowledge, but also their adherence and disease self-management.

PATIENTS’ JOURNEY THROUGH INFLAMMATORY BOWEL DISEASE (IBD): A QUALITATIVE STUDY

2021 ◽  
Vol 27 (Supplement_1) ◽  
pp. S53-S54
Author(s):  
Tina Aswani Omprakash ◽  
Norelle Reilly ◽  
Jan Bhagwakar ◽  
Jeanette Carrell ◽  
Kristina Woodburn ◽  
...  
Keyword(s):  
Inflammatory Bowel Disease ◽  
Qualitative Study ◽  
Patient Experience ◽  
Bowel Disease ◽  
Quality Care ◽  
Diagnostic Testing ◽  
Healthcare Providers ◽  
Indeterminate Colitis ◽  
Patient Journey ◽  
Inflammatory Bowel

Abstract Background Inflammatory bowel disease (IBD) is a debilitating intestinal condition, manifesting as Crohn’s disease (CD), ulcerative colitis (UC) or indeterminate colitis (IC). The patient experience is impacted by a lack of awareness from other stakeholders despite growing global disease prevalence. To gain deeper insight of the patient experience, promote quality care, and enhance quality of life, we performed a qualitative study of the patient journey starting from pre-diagnosis through treatment. Methods U.S. patients with IBD were recruited via UC/CD support groups and organizations, social media platforms, blog followers, and personal networks. Participants were screened via an emailed survey and asked to self-identify as medically diagnosed on the basis of reported diagnostic testing. Interviews were conducted by qualitative researchers by phone or web conferencing. Open-ended questions were developed to support and gather information about our learning objectives—primarily, our desire to understand the unique experiences of UC/CD patients in their journey from symptom onset through diagnosis, treatment and maintenance (e.g. “Upon diagnosis, what were your immediate thoughts about the condition?”). This qualitative data were analyzed using Human-Centered Design methodology, including patient typologies (personas), forced temporal zoom (journey maps), forced semantic zoom (stakeholder system mapping), and affinity mapping for pattern recognition of unmet needs. Results A total of 32 patients were interviewed: N=17 CD patients, N=13 UC patients and N=2 IC patients. The interviewed population reflected regional, demographic, and disease-related diversity (Table 1). Five unique, mutually exclusive journeys were identified to understand and classify patient experiences: (1) Journey of Independence, (2) Journey of Acceptance, (3) Journey of Recognition, (4) Journey of Passion and (5) Journey of Determination (Figure 1). Patients with IBD expressed a need for increased awareness, education, and training for providers to shorten the path to diagnosis. Mental health support was found to be a critical gap in care, particularly for major treatment decisions (e.g., surgery). The inclusion of emotional support into the treatment paradigm was perceived as essential to long-term wellness. Patient attitudes and self-advocacy varied on their individual journeys; understanding these journeys may accelerate time to diagnosis and treatment. Conclusion Better understanding of patient journeys can help healthcare providers improve their approach to patient care and coordination.

scholarly journals Inflammatory Bowel Disease, Are Symptoms and Diet Linked?

Proceedings ◽  
2019 ◽  
Vol 37 (1) ◽  
pp. 20
Author(s):  
Morton ◽  
Pedley ◽  
Stewart ◽  
Coad
Keyword(s):  
Inflammatory Bowel Disease ◽  
New Zealand ◽  
Gastrointestinal Tract ◽  
Bowel Disease ◽  
Inflammatory Conditions ◽  
Inflammatory Bowel ◽  
Collective Term

New Zealand (NZ) has one of the highest rates of Inflammatory Bowel Disease (IBD), a collective term for three chronic inflammatory conditions that affect the gastrointestinal tract. [...]

scholarly journals Health Services Utilization, Specialist Care, and Time to Diagnosis with Inflammatory Bowel Disease in Immigrants to Ontario, Canada

2016 ◽  
Vol 22 (10) ◽  
pp. 2482-2490 ◽  
Author(s):  
Eric I. Benchimol ◽  
Douglas G. Manuel ◽  
Nassim Mojaverian ◽  
David R. Mack ◽  
Geoffrey C. Nguyen ◽  
...  
Keyword(s):  
Inflammatory Bowel Disease ◽  
Health Services ◽  
Bowel Disease ◽  
Health Services Utilization ◽  
Specialist Care ◽  
Services Utilization ◽  
Time To Diagnosis ◽  
Inflammatory Bowel

The risk of non-melanoma skin cancer in New Zealand in inflammatory bowel disease patients treated with thiopurines

2018 ◽  
Vol 33 (5) ◽  
pp. 1047-1052 ◽  
Author(s):  
Morwan Bahi ◽  
Russell S Walmsley ◽  
Andrew R Gray ◽  
David Young ◽  
Catherine E Hobbs ◽  
...  
Keyword(s):  
Inflammatory Bowel Disease ◽  
New Zealand ◽  
Skin Cancer ◽  
Bowel Disease ◽  
Non Melanoma Skin Cancer ◽  
Inflammatory Bowel ◽  
Melanoma Skin

scholarly journals The Experience of Self-conscious Emotions in Inflammatory Bowel Disease: A Thematic Analysis

2021 ◽  
Author(s):  
Noelle Robertson ◽  
Sarah Gunn ◽  
Rebecca Piper
Keyword(s):  
Inflammatory Bowel Disease ◽  
Thematic Analysis ◽  
Bowel Disease ◽  
Help Seeking ◽  
Future Research ◽  
Structured Interviews ◽  
Semantic Approach ◽  
Critical Realist ◽  
Key Factor ◽  
Inflammatory Bowel

AbstractFew studies have investigated emotional experiences in people living with inflammatory bowel disease (IBD). However, self-conscious emotions, including embarrassment and shame, are indicated as a key factor in delayed help-seeking for bowel symptoms, which can result in poorer health outcomes. This study aimed to explore experiences of self-conscious emotions among people with IBD. Fifteen participants were recruited from outpatient IBD clinics and patient groups, and engaged in semi-structured interviews about their experiences of IBD-related self-consciousness. Data were analysed using thematic analysis following an inductive, semantic approach and conducted from a critical realist position. The analysis generated two themes, each with three sub-themes, which captured self-conscious emotions in relation to experiences which threatened participants’ preferred identities. The first theme, ‘Lack of control’ encapsulated participants’ distress relating to fundamental alteration in self-perception, and their attempts to mitigate this. The second, ‘Lack of understanding’ captured distress associated with awareness of being unfairly judged by other people. Clinical implications are identified, including consideration of therapeutic approaches which target self-conscious emotions such as shame, and continued societal efforts to educate others about invisible disabilities such as IBD. Experiences which threatened participants’ identities were implicated in the generation of self-conscious emotions; these should be considered in work with clients with IBD. Future research should target further investigation of these constructs.

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