Aims: To explore how patients with COPD experience helplessness.
Methods:In-depth interviews with 29 patients with moderate to very severe COPD. Data were analysed using a general inductive approach.Results: All patients focused on acute symptoms and expressed feelings of helplessness in the management of their condition; little attention was paid to longer-term strategies. For one group of patients, mostly European, self blame appeared to intensify feelings of helplessness. For a second group, mostly Pacific, a focus on faith in God, Church and family provided a more positive affect and existed alongside helplessness.Conclusions: Clinicians seeking to support patients to include longer term strategies in their self management will need to coach patients to experiences of short-term success, and be aware of the ways that patients experience and interpret their helplessness. Clinicians need to address self blame, and recognise patients' priorities of faith and family.
Background Primary health care does not adequately respond to populations known to have high needs such as those with compounding jeopardy from chronic conditions, poverty, minority status and age; as such populations report powerlessness.
BackgroundCompared with New Zealand Europeans, Pacific peoples in New Zealand develop type 2 diabetes at a higher rate and a younger age, and have 3.8 times higher incidence of end‐stage renal disease (ESRD).ObjectiveTo investigate contextual factors that shape understandings of disease for Pacific peoples with diabetes and ESRD.MethodsFocussed ethnography. In‐depth interviews were conducted with 16 Pacific people on haemodialysis for diabetic ESRD, in Auckland, New Zealand. Study participants aged between 30 and 69 years old were of Samoan, Cook Islander, Tongan, Niuean or Tokelauan ethnicity. Thematic analysis was used to code and identify themes.ResultsParticipants were embedded in a multigenerational legacy of diabetes. The limited diabetes‐related education of earlier generations influenced how future generations behaved and understood diabetes. Perceptions were compounded by additional factors including the invisibility of early‐stage diabetes; misunderstandings of health risks during communication with health providers; and misunderstandings of multiple conditions’ symptoms and management. Participants had limited engagement with health services until their diagnosis of ESRD acted as a trigger to change this behaviour. However, this trigger was not effective in itself—rather, it was in combination with relevant education delivered in a way that made sense to participants, given their current understandings.ConclusionsIllness representations drive choices and behaviours with respect to self‐management of diabetes and engagement with health services. Diabetes is often present in multiple generations of Pacific people; therefore, illness representations are developed and shared within a family. Changing illness representations requires engagement with the individual within a family context.
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