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Living with diabetes: a lifelong learning process
Karolinska institutet, Institutionen för neurobiologi, vårdvetenskap och samhälle.
2015 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Living with diabetes, as a lifelong illness, is interlaced with learning and to face continual changes. However, the role of time in this learning process is not yet well understood. The overall aim of the thesis was to gain a deepened understanding of learning to live with diabetes for those recently diagnosed and over a three year period. The thesis, involving four studies where qualitative inductive content analysis (I, III) and phenomenological hermeneutical interpretation (II, IV) were used, has a lifeworld approach and a qualitative and longitudinal design. Thirteen persons, recently diagnosed with diabetes (type I or II), were interviewed on three different occasions over a three year period. All interviews focused on the experience of living with diabetes and situations where diabetes had to be taken into account. The aim of study I was to reach an understanding of how learning to live with diabetes is experienced in the first 2 months after diagnosis. The findings revealed to be taken over by a new reality, with a body that played a role in life with the health care service as a necessary partner. The aim of study II was to illuminate the meaning of learning to live with diabetes three years after being diagnosed. The findings revealed learning as making decisions through use of different sources of information and as solving the life-puzzle – a delicate balance to create a desired life. The aim of study III was to identify patterns in learning when living with diabetes, from recently being diagnosed, and over a 3-year period. In the findings five patterns were identified illuminating different learning processes emerging over time. A longer time living with diabetes did not per se mean increased satisfaction in living well with illness or increased confidence in understanding one’s own needs. The aim of the IV study was to illuminate the meanings of trigger situations in learning to live with diabetes. The findings revealed trigger situations, such as being encumbered by vulnerability and temporality in unsustainable situations with an unpredictable body and a life involving new concerns for the future. The thesis conducted that learning was an informal and ongoing everyday process in life. Time living with diabetes meant both an increased mastery of a changed life situation, but also increased difficulties in achieving well-being and with a dependency on health care. Hence, health care interventions must adhere to the individual’s needs and not be based on duration of illness. Understanding the body and the role of health care, as well as what facilitates and hampers learning, changed with time. It is therefore important that health care personnel illuminate the individual understanding and experiences of those living with diabetes as this was found to be important for the learning process as well as for their sense of well-being.

Place, publisher, year, edition, pages
Stockholm: Karolinska institutet , 2015. , 81+bilagor p.
Keyword [en]
Diabetes, Lifelong illness, Learning process, Transition, Self-management, Triggers, Lifeworld
National Category
Nursing
Identifiers
URN: urn:nbn:se:esh:diva-4751Libris ID: 17611496ISBN: 978-91-7549-814-0 (print)OAI: oai:DiVA.org:esh-4751DiVA: diva2:827102
Public defence
2015-03-06, Aulan, Stigbergsgatan 30, Stockholm, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2015-06-26 Created: 2015-06-26 Last updated: 2015-06-26Bibliographically approved
List of papers
1. Learning to live with illness: experiences of persons with recent diagnoses of diabetes mellitus
Open this publication in new window or tab >>Learning to live with illness: experiences of persons with recent diagnoses of diabetes mellitus
2011 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 25, no 3, 558-566 p.Article in journal (Refereed) Published
Abstract [en]

Background: The process of learning to live with an illness is complex. By better understanding the learning process for persons with diabetes in the early stage of the illness, the role of the health care can be shown.

Aim: To reach an understanding of how learning to live with diabetes is experienced in the first 2 months after diagnosis.

Method: A qualitative descriptive design was used, and interviews were conducted. Thirteen participants with a recent diagnosis of diabetes were included and asked to narrate about their experience of living with diabetes. Qualitative inductive content analysis was used.

Findings: Four themes emerged: ‘taken over by a new reality’, ‘the body plays a role in life’, ‘different ways of learning’ and ‘the healthcare service as a necessary partner’.

Conclusion: People with short-term experience of the illness gained knowledge through personal resources such as their own experience and self-reflection. The learning process includes an inner dialogue between the self, the body and the life. Participants were concerned with grasping a new reality and understanding a different self and body where lifestyle changes and uncertainty were present. When health care was accessible and sensitive to their needs, those with short-term experience of diabetes chose the staff as key players in the early stages of their life with diabetes.

Keyword
Nursing, Qualitative content analysis, Interview, Patient learning, Patient education, Diabetes mellitus, Chronic illness
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-1219 (URN)10.1111/j.1471-6712.2010.00864.x (DOI)21244458 (PubMedID)
Available from: 2011-06-14 Created: 2011-06-14 Last updated: 2015-06-26Bibliographically approved
2. Learning to live with diabetes: integrating an illness or objectifying a disease
Open this publication in new window or tab >>Learning to live with diabetes: integrating an illness or objectifying a disease
2012 (English)In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 68, no 11, 2486-2495 p.Article in journal (Refereed) Published
Abstract [en]

Aim: This paper is a report of a study of illuminating the meaning of ‘learning to live with diabetes’ 3 years after being diagnosed.

Background: A changed situation, for example, in relation to living with diabetes, raises a need to understand. How time for experience contributes to this learning process for people living with diabetes is not yet well understood. It would therefore seem valuable to ask people, who have had diabetes over a similar length of time, to narrate their experience in relation to daily life situations in order to understand better how learning is established.

Design: The study has a qualitative design.

Methods: A life world approach was used, with interviews being conducted with 13 people who had been diagnosed with diabetes 3 years earlier. Data were collected in 2007, and analyses were conducted using a phenomenological-hermeneutic method.

Findings: How a person experiences the physical body was found to be crucial in the learning process. If the body with its signals is understood it can be a tool for experiencing and understanding the world and oneself. Feeling insecure about one’s own needs, and not trusting or understanding bodily signs, made participants dependent on others to make decisions for them.

Conclusion: This study showed that duration of illness was ‘not’ of importance for the understanding of living with diabetes. Living with diabetes 3 years after being diagnosed meant to experience both an overall balance in one’s existence and a daily struggle.

Keyword
Chronic illness, Diabetes, Experiences, Interviews, Lived body, Lived experience, Nursing
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-2935 (URN)10.1111/j.1365-2648.2012.05947.x (DOI)22335357 (PubMedID)
Available from: 2014-03-11 Created: 2014-03-11 Last updated: 2015-06-26Bibliographically approved
3. Living with diabetes: Development of learning patterns over a 3-year period
Open this publication in new window or tab >>Living with diabetes: Development of learning patterns over a 3-year period
2014 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 9, 24375Article in journal (Refereed) Published
Abstract [en]

Background: Learning involves acquiring new knowledge and skills, and changing our ways of thinking, acting, and feeling. Learning in relation to living with diabetes is a lifelong process where there is limited knowledge of how it is experienced and established over time. It was considered important to explore how learning was developed over time for persons living with diabetes.

Aim: The aim of the study was to identify patterns in learning when living with diabetes, from recently being diagnosed, and over a 3-year period.

Materials and methods: A longitudinal qualitative descriptive design was used. Thirteen participants, with both type I and type II diabetes, were interviewed at three different occasions during a 3-year period. Qualitative content analysis was used in different steps in order to distinguish patterns.

Findings: Five main patterns of learning were identified. Two of the patterns (I and II) were characterized by gradually becoming comfortable living with diabetes, whereas for one pattern (IV) living with diabetes became gradually more difficult. For pattern V living with diabetes was making only a limited impact on life, whereas for Pattern III there was a constant management of obstacles related to illness. The different patterns in the present study showed common and different ways of learning and using different learning strategies at different timespans.

Conclusion: The present study showed that duration of illness is not of importance for how far a person has come in his own learning process. A person-centered care is needed to meet the different and changing needs of persons living with diabetes in relation to learning to live with a lifelong illness.

Keyword
Activities of daily living, Chronic illness, Knowledge, Problem-solving self-care, Self-management
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-4029 (URN)10.3402/qhw.v9.24375 (DOI)25030359 (PubMedID)
Available from: 2014-09-11 Created: 2014-09-11 Last updated: 2015-06-26Bibliographically approved
4. Encumbered by vulnerability and temporality: The meanings of trigger situations when learning to live with diabetes. [Submitted]
Open this publication in new window or tab >>Encumbered by vulnerability and temporality: The meanings of trigger situations when learning to live with diabetes. [Submitted]
(English)Manuscript (preprint) (Other academic)
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-4535 (URN)
Available from: 2015-03-31 Created: 2015-03-31 Last updated: 2015-06-26Bibliographically approved

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