Striving towards normality in an unpredictable situation. A qualitative interview study of how persons newly diagnosed with incurable oesophageal and gastric cancer manage everyday life

Dalhammar, Karin; Kristensson, Jimmie; Malmström, Marlene; Rasmussén, Birgit H.

doi:10.1016/j.ejon.2023.102302

Cited by 2 publications

(1 citation statement)

References 42 publications

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“…Normal was something that had become normal over time. Striving for normality has previously been reported in several studies focusing on other chronic diseases, such as cancer (Dalhammar et al, 2023;Fauske et al, 2020), Parkinson's disease (Haahr et al, 2021), parents' experiences of infant heart disease (Elliott et al, 2021), myocardial infarction (Petriček et al, 2017), and stroke (Norlander et al, 2022). Accordingly, the striving for normality is not bound to a specific condition, but rather to the human condition.…”

Section: Suffering From a Vlumentioning

confidence: 92%

Living with a venous leg ulcer: Lived experiences and the presence of self-care in daily life

Rosenburg

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[en] Aim: The overall aim of this thesis was to describe the lived experiences of patients with hard-to-heal venous leg ulcers before and after healing, as well as the understanding of the role and presence of self-care activities in ulcer management. Methods: The thesis is based on four studies, with differing designs. In Studies I and II, a phenomenological approach was used. To describe lived experiences of undergoing ulcer management, 16 persons were interviewed (I), and to describe lived experiences of daily life after healing,15 persons were interviewed (II). Study III was a registry-based, quantitative study. In total, data from 699 patients with venous leg ulcers(VLUs) were analyzed. Logistic regressions were performed to describe associations between advice given on self-care and its impact on ulcer healing. Study IV, which focused on patient experiences of the feasibility of an intervention for self-care, was based on eleven interviews with six patients with VLUs. The data from the interviews underwent qualitative content analysis. Results: Ulcer management aims at ulcer healing. In the protracted process, patients often experience hopelessness. When healing is slow, patients doubt the professionals’ knowledge. A patient’s trust in professionals and the entire healthcare system may erode if treatment and information vary between different professionals (Study I). Study II revealed that daily life after healing was still strongly affected by the ulcer. Memories from a lost period in life were ever-present. Life after healing was changed – for some, life was not very eventful. The patients’ own knowledge was often limited, and there was a struggle to do what was best for the own body to prevent a new ulcer. Study III revealed that advice on nutrition and physical activity had no impact on healing time. Only 44% of the sample were advised on both nutrition and physical activity. It was common to have an ulcer for a long time before seeking help; about half of the sample had an ulcer for >84 days before registration. Other findings were that the median age among the 699 patients was 77 years, the majority were female, and comorbidity was common. The intervention tested in Study IV offered welcomed information. However, even among those experiencing some sense of recognition, the link to their own situation and life was unclear. The technical solution with videos on a flash drive was difficult for most people to use. The importance of close cooperation with professionals was highlighted. Conclusion: Venous leg ulcers have a profound impact on patients and their life situations. Ulcer management can, in different ways, impose suffering on patients. Not being listened to or seen as a person is anexperience that leaves its marks on a patient. When healing is slow, and someone has to be blamed, relationships with professionals are damaged. The role of self-care is unclear for most patients, which makes self-care harder. Those who tried a video-based intervention for self-care showed difficulties in relating it to their own life. Enabling a caring relationship can enhance patients’ understanding of information and advice. Patients must be invited to share their own experiences, to create a foundation for self-care. The provision of advice alone is not the solution to the issues related to self-care.

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Section: Suffering From a Vlumentioning

confidence: 92%

Living with a venous leg ulcer: Lived experiences and the presence of self-care in daily life

Rosenburg

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Together but still alone - A qualitative study exploring how family members of persons with incurable oesophageal or gastric cancer manage everyday life

Kårmark,

Malmström,

Kristensson

2024

BMC Palliat Care

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Background Cancer affects not only the person with the disease but those around them. Being a family member is described as strenuous and, often, associated with stress, anxiety and feelings of loneliness. There is a heightened risk of distress for family of those with fast-progressing, severe oesophageal or gastric cancer. Early palliative care involving family is vital yet often overlooked. In order to include family members in early palliative care their management in everyday life needs to be explored. Method Qualitative inductive interview study using content analysis guided by Graneheim and Lundman. Result The analysis resulted in the overarching theme “Managing the disease together but still alone”. Three categories were identified: Adapting to the disease, Taking control of the situation, Processing emotions. Each category described family members management in various aspects of everyday life together with the ill person and alone. Conclusion The results may contribute to an awareness of family members’ management of large parts of everyday life and, further, their feelings of loneliness, and indicates that family members should be included early in oesophageal or gastric cancer palliative care. Further studies are needed to develop the content of such family-inclusive early palliative care.

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Striving towards normality in an unpredictable situation. A qualitative interview study of how persons newly diagnosed with incurable oesophageal and gastric cancer manage everyday life

Cited by 2 publications

References 42 publications

Living with a venous leg ulcer: Lived experiences and the presence of self-care in daily life

Living with a venous leg ulcer: Lived experiences and the presence of self-care in daily life

Together but still alone - A qualitative study exploring how family members of persons with incurable oesophageal or gastric cancer manage everyday life

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