Improving access to health care for people with severe chronic obstructive pulmonary disease (COPD) in Southern New Zealand: qualitative study of the views of health professional stakeholders and patients

Stokes, Tim; Tumilty, Emma; Latu, Anna Tiatia Fa'atoese; Doolan‐Noble, Fiona; Baxter, Joanne; McAuley, Kathryn; Hannah, Debbie; Donlevy, Simon; Dummer, Jack

doi:10.1136/bmjopen-2019-033524

Cited by 12 publications

(14 citation statements)

References 34 publications

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“…These barriers to access were also identified in a recent study of a different chronic disease (chronic obstructive pulmonary disease) set in the same region of NZ. 35 Implications for clinical practice and health policy Patients living rurally with IBD value relational continuity of care with the gastroenterology specialist team which allows trust to develop and the provision of information and support at all stages of the patient's journey: from receiving initial diagnosis through ongoing medical management during both remission and flare ups. For rural patients, however, this is often 'care at a distance', as attendance at the urban centre for treatment in person necessitates additional costs in terms of accommodation, fuel and the time taken for a lengthy commute.…”

Section: Strengths and Limitationsmentioning

confidence: 99%

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

et al. 2020

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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.

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Section: Strengths and Limitationsmentioning

confidence: 99%

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

et al. 2020

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“…These barriers to access were also identified in a recent study of a different chronic disease (Chronic Obstructive Pulmonary Disease) set in the same region of NZ. 31…”

Section: Discussionmentioning

confidence: 99%

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

Richard

Noller

Derrett

et al. 2020

Preprint

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Objective To explore how adults living with Inflammatory Bowel Disease (IBD) in rural New Zealand manage their condition and engage with health care 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 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. 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.

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“…for them and what they thought was missing or needed improvement (reported elsewhere) 17 (see Supplementary table S1 available at the journal's website). Interviews were undertaken by E. Tumilty and A. Latu between April 2016 and January 2017.…”

Section: What This Gap Fillsmentioning

confidence: 99%

“…However, several participants were unaware of the existence of a local pulmonary rehabilitation programme. 17 We suggest that these four themes relate to a patient's ability to cope, where coping is understood as a 'balancing act' between insecurity and resilience (Fig. 1).…”

Section: Social Supportmentioning

confidence: 99%

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'A balancing act'. Living with severe chronic obstructive pulmonary disease in Southern New Zealand: a qualitative study

et al. 2020

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INTRODUCTIONChronic obstructive pulmonary disease (COPD) is a common chronic condition managed in primary care. AIMTo understand how patients with severe COPD living in the Southern Health Region (Otago and Southland) experience and cope with the condition. METHODSSemi-structured interviews were undertaken with 23 patients with severe COPD (defined using the 2013 GOLD classification). A thematic analysis was conducted. RESULTSPatients’ accounts of living with severe COPD revealed four themes: loss, adaptation, isolation and social support. All participants discussed their sense of loss in coming to terms with having COPD and the ongoing restrictions or changes that were associated with breathlessness and fatigue. These losses required adaptation in daily living. Some patients struggled to adjust to new limitations and needed to rely on others for support. Others found ways to adapt their surroundings or ways of doing things while trying to maintain the same activities. Isolation was described in two ways – direct (no longer being able to easily socialize because activities often caused breathlessness) and indirect (the feeling of being isolated from others because they do not understand what it is like to live with COPD). Social support, including support provided by group-based pulmonary rehabilitation, helped to address the problems of social isolation. DISCUSSIONLiving with severe COPD is a ‘balancing act’ between insecurity (loss and isolation) and resilience (adaptation and social support). Health-care providers need to be proactive in identifying and managing patients’ unmet health needs and promote activities that reduce social isolation.

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Improving access to health care for people with severe chronic obstructive pulmonary disease (COPD) in Southern New Zealand: qualitative study of the views of health professional stakeholders and patients

Cited by 12 publications

References 34 publications

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

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

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

'A balancing act'. Living with severe chronic obstructive pulmonary disease in Southern New Zealand: a qualitative study

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