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- Andreassen, Sissel
(författare)
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Life Situation, Information Needs, and Information Seeking in Patients with Oesophageal Cancer and their Family Members
- 2006
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- 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
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| 2. |
- Randers, Ingrid
(författare)
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Upholding Older Adults' Innate and Inherent Dignity within a Caring Context
- 2002
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- In the ethical ideals of autonomy and integrity reducing the level of abstraction is necessary in order to more easily be able to follow them in every day care practices. This is especially true concerning the effort of upholding older adult patients dignity. Creative intervention programs may help to increase health care professionals ethical competence. In the first study (I) 12 older adults experiences of care are described, with special reference to their integrity. In addition, four student nurses were interviewed and participant observations were performed in order to describe the health care professionals integrity- promoting or non-promoting behaviours. The findings confirmed, in relation to a theoretical model, which determined ten categories of integrity related to the self-concept the complexity of the concept, but they also indicated that in relation to older patients a further category should be included namely one relating to their social self Therefore, the purpose of the second study (II) was to deepen the understanding of the identified eleventh category, social self, and how it may effect the ethical care in older adult patients. Two themes were identified: Social exchange, which was described as the older adult informants wish to be respected for their needs of meaningful social and human contacts, but also for their needs of meaningful social activities. Social experiences included the older informants wish to be respected for their needs of talking about themselves, recalling and sharing memories, moreover, to be respected for their needs of being a part of the world outside the hospital. Thus, the findings indicate the relevance of the new identified category. In the third study (III) the aim was to achieve a deeper understanding of an older cognitively intact mans lived experiences of being a patient in a geriatric context, where the majority of the patients were cognitively impaired. An earlier qualitative interview from study I was used and analysed from a phenomenological approach that illustrated health care professionals lack of meeting and confirming individual patients needs to be met as unique individuals with personal preferences, own resources and the ability to take charge over their own life. The health care professionals care actions tended to depend upon the needs of the cognitively impaired. In the fourth study (IV) the aim was to teach ethics from an activating instructional approach and then to evaluate whether or not this was a practicable strategy to influence individual health care members attitudes as well as their ethical caring behaviour with a special focus on the patients autonomy and integrity. A 6 and 12 months follow up was performed including group-interviews and participant observations. The findings indicate that the attitudes of individual participants had actually changed into a more patient-centred perspective and that their caring behaviour agreed to their attitudes. Based on real- life care situations taken from the fields of geriatrics, where the majority of the patients were cognitively impaired the aim of the fifth study (V) was to examine the relationship between autonomy and integrity resulting from the interactions between the individual health care member and the patients. These findings indicate that the relationship was ethically complex and that they were inseparable for maintaining a patients dignity. Consequently, this meant that if the health care professionals respected the older adult patients autonomy their integrity was protected and thereby, their innate and inherent dignity.
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