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Life Situation, Information Needs, and Information Seeking in Patients with Oesophageal Cancer and their Family Members
Sophiahemmet University.ORCID iD: 0000-0002-9929-4779
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 [en]
Oesophageal cancer, Patients, Family members, Illness experiences, Informations needs, Information seeking
National Category
Nursing
Identifiers
URN: urn:nbn:se:shh:diva-133ISBN: 91-7140-827-4 (print)OAI: oai:DiVA.org:shh-133DiVA: diva2:304241
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
List of papers
1. A meta-analysis of qualitative studies on living with oesophageal and clinically similar forms of cancer, seen from the perspective of patients and family members
Open this publication in new window or tab >>A meta-analysis of qualitative studies on living with oesophageal and clinically similar forms of cancer, seen from the perspective of patients and family members
2007 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, Vol. 2, no 2, 114-27 p.Article in journal (Refereed) Published
Abstract [en]

This study is part of a research programme of which the aim is to generate knowledge about patients' and family members' experiences of living with oesophageal cancer from their perspective. The aim of the present study was to extend this knowledge by adding other forms of cancer: other upper gastrointestinal cancer, and head and neck cancer. These cancer forms have clinical similarities with oesophageal cancer and the survival rates are similar. This study is a qualitative meta-analysis that examines the results reported in 13 qualitative original research reports, published in peer-reviewed nursing journals between April 1998 and June 2006. We used thematic analysis. Three themes were formulated: “running into an unpredictable enemy”, “enduring a fading body” and “entering social silence”. Patients and family members gave voice to a suffering that involved the whole person. Our findings show that the whole person must be given care, and this care must include the whole family

Keyword
Meta-analysis, Illnes experiences, Upper gastrointestinal cancer, Head and neck cancer, Thematic analysis, Patient and family perspective
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-18 (URN)
Available from: 2010-03-02 Created: 2010-02-19 Last updated: 2014-09-29Bibliographically approved
2. Patients' experiences of living with oesophageal cancer
Open this publication in new window or tab >>Patients' experiences of living with oesophageal cancer
Show others...
2006 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 15, no 6, 685-95 p.Article in journal (Refereed) Published
Abstract [en]

AIMS: The aim of this study is to describe patients' experiences of living with oesophageal cancer and how they seek information. BACKGROUND: Oesophageal cancer is a devastating disease with poor prognosis. Nursing care for individuals with oesophageal cancer requires increased knowledge of how they experience illness and how it affects them. METHOD: Data were collected by semi-structured, qualitative interviews with 13 participants. Content analysis was used to analyse data. RESULTS: Four themes were identified: (i) Experiences of becoming a patient diagnosed with oesophageal cancer is distinguished by the participants' experiences of vague symptoms, of receiving the diagnosis and of existential concerns evoked by the illness. (ii) Experiences of undergoing investigations and treatment consist of the participants' experiences of extreme tiredness in relation to investigations and treatment. (iii) Experiences of intrusions in daily life is conceptualized by the participants' experiences of how the illness influenced their daily life. (iv) Managing a life-threatening illness consists of a variety of strategies, which the participants employed to manage their life-threatening illness. CONCLUSIONS: The participants were unprepared of receiving a diagnosis of oesophageal cancer. Dysphagia, fatigue and uncertainty influenced the participants' everyday life. To manage the illness one of their strategies was seeking for information. The physicians were considered the main source of information, but family as well as friends with medical knowledge were also acknowledged as valuable sources. RELEVANCE TO CLINICAL PRACTICE: Understanding patients' experiences of living with oesophageal cancer is important to improve nursing care. When caring for these patients, focus ought to be on the whole family. In nursing care, it is important to be aware of the effects of dysphagia and fatigue. Health-care professionals ought to organize meetings with fellow patients and recommend literature and websites that provide patients with high quality information.

National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-16 (URN)10.1111/j.1365-2702.2006.01412.x (DOI)16684164 (PubMedID)
Available from: 2010-03-04 Created: 2010-02-19 Last updated: 2014-09-29Bibliographically approved
3. Family members' experiences, information needs and information seeking in relation to living with a patient with oesophageal cancer
Open this publication in new window or tab >>Family members' experiences, information needs and information seeking in relation to living with a patient with oesophageal cancer
Show others...
2005 (English)In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 14, no 5, 426-34 p.Article in journal (Refereed) Published
Abstract [en]

A qualitative study was conducted with the aim to describe family members' experiences, information needs and information seeking in relation to living with a patient suffering from oesophageal cancer. Data were collected by means of semi-structured interviews with nine family members. A content analysis was used in order to organize data. It was found that family members were not aware of the severe diagnosis and the illness caused intrusions on the family. The time following diagnosis family members' information seeking was low. They used interpersonal as well as mass media sources to obtain knowledge about and handle the uncertainty related to the illness. Some family members did not actively seek information. In conclusion, healthcare professionals are expected to improve quality of cancer care. These improvements are unlikely to occur without an understanding of family members' needs. This study shows that the family members were unprepared of receiving a diagnosis of oesophageal cancer. They emphasized the importance of including the children in the care given. Moreover, the whole family was faced with uncertainty, which led to intrusion on everyday life. Therefore, family members used different strategies for managing the uncertainty, whereof one was searching for information. The primary source of information was the physician.

National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-17 (URN)10.1111/j.1365-2354.2005.00602.x (DOI)16274463 (PubMedID)
Available from: 2010-03-04 Created: 2010-02-19 Last updated: 2014-09-29Bibliographically approved
4. 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
Open this publication in new window or tab >>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
Show others...
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.

National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-15 (URN)10.1111/j.1365-2354.2006.00742.x (DOI)17508949 (PubMedID)
Available from: 2010-03-04 Created: 2010-02-19 Last updated: 2014-09-29Bibliographically approved

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