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Information needs following a diagnosis of oesophageal cancer; self-perceived information needs of patients and family members compared with the perceptions of healthcare professionals: a pilot study
Sophiahemmet University.ORCID iD: 0000-0002-9929-4779
Sophiahemmet University.
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2007 (English)In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 16, no 3, 277-85 p.Article in journal (Refereed) Published
Abstract [en]

This pilot study was undertaken to describe patients' and family members' information needs following a diagnosis of oesophageal cancer and healthcare professionals' (HCP) perceptions concerning patients' and family members' information needs. Another aim was to describe patients' and family members' satisfaction with information provided. Data were collected by means of a self-report questionnaire. A total of 15 patients, 16 family members and 34 HCP participated. Patients and family members consider most information to be important. The high rating for information about tests/treatment and self-care means that both patients and family members consider this to be the most important areas of information. Healthcare professionals tend to underestimate both patients' and family members' needs for information. Patients and family members were only partly satisfied with the information received, with patients in general more satisfied with information given compared with family members. Patients' and family members' needs for information following a diagnosis of oesophageal cancer are substantial and have not been adequately met by HCP. A qualitative study might be helpful to complete the description of patients' and family members' needs. If a questionnaire is employed, it ought to be less extensive.

Place, publisher, year, edition, pages
2007. Vol. 16, no 3, 277-85 p.
National Category
Nursing
Identifiers
URN: urn:nbn:se:shh:diva-15DOI: 10.1111/j.1365-2354.2006.00742.xPubMedID: 17508949OAI: oai:DiVA.org:shh-15DiVA: diva2:302130
Available from: 2010-03-04 Created: 2010-02-19 Last updated: 2014-09-29Bibliographically approved
In thesis
1. Life Situation, Information Needs, and Information Seeking in Patients with Oesophageal Cancer and their Family Members
Open this publication in new window or tab >>Life Situation, Information Needs, and Information Seeking in Patients with Oesophageal Cancer and their Family Members
2006 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

This thesis explores the experiences of living with oesophageal cancer from the perspective of patients and family members. Also, their needs for information and how they seek information in relation to the illness were investigated. The thesis comprises one qualitative meta-analysis and three empirical studies including data from patients, family members, and health-care professionals.

 

Paper I was a qualitative meta-analysis the aim of which was to extend knowledge about patients' and family members' experiences of living with oesophageal cancer and clinically similar cancer forms, mainly head and neck cancer. As a result of the thematic analysis we have shown that both patients and family members 'run into an unpredictable enemy'. Patients had to 'endure a fading body' Running into an unpredictable enemy and enduring a fading body led to -entering social silence' for patients and family members.

The aim of paper II was to describe patients' experiences of living with oesophageal cancer and how they seek information in relation to the illness. Data was collected by qualitative interviews with thirteen patients and analysed by qualitative content analysis. The findings describe patients' experiences of receiving the diagnosis, their experiences of vague symptoms, and of existential concerns evoked by the illness. Undergoing investigations and treatment caused extreme tiredness. Patients experienced that the illness intruded upon their daily life. In order to manage the life-threatening illness- they sought information about the illness.

The aim of paper III was to describe family members' experiences of living with a patient suffering from oesophageal cancer, their information needs and information seeking Data was collected by means of qualitative interviews with nine family members and analysed by qualitative content analysis. The findings describe that family members lacked awareness of the disease. When faced with the diagnosis, shock, stress, and disbelief were evoked . The cancer illness became intrusive into their everyday lives, routines, and life plans. Uncertainty about the course and prognosis of the disease was the main source of distress among them. In order to learn, obtain understanding for the illness, and manage this uncertainty, family members entrusted themselves to the experts and sought information from them.

Paper IV was a pilot study the aim of which was to describe patients' and family members' information needs following a diagnosis of oesophageal cancer, their satisfaction with information obtained, and health-care professionals' perceptions concerning patients' and family members' information needs. Data was collected by means of a study-specific questionnaire and analysed with descriptive statistics. The results indicate that patients' and family members need for information following a diagnosis of oesophageal cancer was substantial and had not been adequately met by health-care professionals.

In conclusion, the receipt of the diagnosis of oesophageal cancer was an abrupt change from feeling healthy with vague symptoms to having a life-threatening illness. The illness disrupts patients' and family members' social world and relationships, and the whole family is affected. For understanding and managing the illness, they sought information from health-care professionals, social networks, and various media

Place, publisher, year, edition, pages
Stockholm: Karolinska University Press, 2006. 57 p.
Keyword
Oesophageal cancer, Patients, Family members, Illness experiences, Informations needs, Information seeking
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-133 (URN)91-7140-827-4 (ISBN)
Public defence
2006-10-27, Föreläsningssal 03, Sophiahemmet Högskola, Lindstedtsvägen 8, Stockholm, 09:00 (English)
Opponent
Supervisors
Available from: 2010-03-17 Created: 2010-03-08 Last updated: 2016-06-09Bibliographically approved

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