Women’s experience of suffering repeated severe attacks of acute intermittent porphyria

Abstract

The aim of this study was to elucidate the experiences of the women with severe, recurrent attacks of porphyria and how they coped with them successfully. A total of five women were interviewed and were encouraged to describe their experiences. Thematic content analysis was used to interpret the significance of their narratives. The result demonstrated that the women's experience was of living in deepest darkness with inexpressible pain, both physical and mental. Coming into contact with health care had its good and bad points. It was often difficult to cope with life during severe periods of the disease. The process of maturation towards a more positive existence seemed to follow a pattern of accepting the disease, continuing the fight until it was finally possible to discover a pattern and meaning in life that suited the individual concerned.

Experiences and concerns of patients with recurrent attacks of acute hepatic porphyria: A qualitative study

“…Having to adjust to the “new normal” proved to be an issue for all patients; however, when referred to psychiatrists/psychologists to help cope, some expressed resentment. This has been reported previously as patients with recurrent attacks did not want to be viewed as having a mental illness 18 . Other patients stated this helped them manage their disease, specifically by providing new coping methods.…”

“…Moreover, physicians should focus on identifying patient-specific barriers to seeking early treatment to prevent progression to a severe attack requiring hospitalization. As noted previously 18 , these patients cited previous poor or difficult clinical experiences when discussing the causes of their treatment avoidance. Although documentation confirming the diagnosis can be useful when presenting to new physicians, these patients struggled with the severity of their symptoms not being recognized.…”

“…A topic guide was developed based on a review of the literature regarding QoL, patient experiences, triggers that cause acute attacks 7,8–10,13–18 and expertise of the research team. The Guide consisted of five sections, each with a brief introduction followed by one to three open-ended questions (Table 2).…”

“…These studies have reported that symptomatic AHP patients have decreased quality of life (QoL), an increased incidence of anxiety and depression, impaired physical functioning, and a negative disease impact on employment 15–17 . The experiences of five women over 55 years old who had recurrent acute attacks were assessed using individual structured interviews 18 . However these women were specifically selected because they were “successful in coping with their lives.” Focus group studies are widely used in common diseases and public health issues, such as cancers, autoimmune diseases, and diabetes, to understand patients’ perspectives.…”

Psychosocial Aspects of Predictive Genetic Testing for Acute Intermittent Porphyria in Norwegian Minors

“…A qualitative study from Sweden, in which five women were interviewed on their experiences with serious AIP attacks, concluded that when these women had their attacks they lived in the ''deepest darkness'', with indescribable pain, both physically and mentally (Wikberg et al 2000). A British questionnaire study of 116 patients (Millward et al 2001) found lower quality of life in patients with AIP, compared to patients with other types of porphyria.…”