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Experiences of diabetes care - patients' and nurses' perspectives
Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
2004 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background: In order to provide good diabetes care it is important for the health care professionals to share patients’ personal understanding of living with diabetes, which differs from a professional understanding of the illness. Patients’ beliefs about health, illness, control and cure are predictive of the outcome of lifestyle changes and pharmacological treatment. Narratives about illness could be used to elucidate what people believe to be central to their experience of an illness and its management. The overall aim of this thesis was to investigate experiences of diabetes and diabetes care among people with type 2 diabetes and district nurses responsible for diabetes care within primary health care.

Methods: Forty-four patients diagnosed with diabetes during the previous 2 years were interviewed about their personal understanding of illness and experiences of care. They also participated in an intervention study consisting of group sessions during 9 months. The intervention focused on the patients’ understanding of living with diabetes and was directed at the patients and their nurses (n = 5). The outcome variables haemoglobin A1c (HbA1c), lipids, blood pressure (BP) and body mass index (BMI) as well as well-being, treatment satisfaction and diabetes symptoms of the intervention group were compared with those in a control group (n = 60). Another ten patients were interviewed about their views of their lives. Seventeen nurses in diabetes care were interviewed about their views of their work with patients. The narrative, thematic interviews and focus group interviews were analysed using qualitative content analysis.

Findings: Patients’ personal understanding of illness included the categories “image of the disease”; “meaning of the diagnosis”; “integration of the illness”; “space for the illness”; “responsibility for care”; and “future prospects”. Patients’ narratives about their lives included views of knowledge, and capacity, motivation and courage, aspects important for effective self-management. Patients’ views on clinical encounters in diabetes care, interpreted as satisfying or not, included the themes “being in agreement v. in disagreement about the goals”; “being autonomous and equal v. being forced into adaptation and submission”; “feeling worthy as a person v. feeling worthless”; “being attended to and feeling welcome v. being ignored”; and “feeling safe and confident v. feeling unsafe and lacking confidence”. The results of the intervention study with group sessions showed improvements in metabolic balance and treatment satisfaction in the intervention group. At the 1-year follow-up the mean difference between groups in HbA1c was 0.94% (95% confidence interval (CI) 0.58–1.29).

Nurses’ views of their work included the themes “Perspectives on illness and caring are not easily integrated into views of disease and its treatment”; “Nurses view their knowledge as more important than the patients’ knowledge”; Nurses’ conscience is challenged by some of their nursing decisions”; “The individuality of each patient is undermined when patients are regarded as a collective group”; and “Nurses are confirmed in their role of nurses by patients who assume a traditional patient role”.

Conclusion: These results demonstrate that the understanding of illness and care differs between patients and nurses working in diabetes care; furthermore, that an intervention involving patients and their nurses based on patients’ personal understanding of illness is effective with regard to metabolic control and treatment satisfaction. The cost of the intervention is moderate. Also, we believe that it is possible to clinically implement this intervention within the existing resources for primary health care.

Place, publisher, year, edition, pages
Omvårdnad, Umeå Universitet , 2004. , 59 p.
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 882
Keyword [en]
Nursing, diabetes type 2, hemoglobin A1c, Primary health care, clinical encounters, group sessions, intervention, professional perspective, patient perspective, narratives, qualitative content analysis
Keyword [sv]
Omvårdnad
National Category
Nursing
Research subject
Caring Sciences
Identifiers
URN: urn:nbn:se:umu:diva-258ISBN: 91-7305-619-7 (print)OAI: oai:DiVA.org:umu-258DiVA: diva2:142838
Public defence
2004-05-19, Aulan, Vårdvetarhuset, Umeå Universitet, Umeå, 09:00 (English)
Opponent
Supervisors
Available from: 2004-05-05 Created: 2004-05-05 Last updated: 2010-06-24Bibliographically approved
List of papers
1. Personal understandings of illness among people with type 2 diabetes
Open this publication in new window or tab >>Personal understandings of illness among people with type 2 diabetes
2004 (English)In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 47, no 2, 174-182 p.Article in journal (Refereed) Published
Abstract [en]

Background. Professionals and patients understand the experience of illness from different worlds. Professionals' explanatory models focus on aetiology, diagnosis, pathophysiology and treatment, while patients' explanatory models are more focused on consequences and influences on daily life. The differences between patients and professionals in their understanding often result in conflicting expectations about treatment, priorities and outcomes of care.

Aim. The aim of this study was to describe personal understandings of illness among people with type 2 diabetes in Sweden.

Method. A sample of 44 patients, 47–80 years, diagnosed with type 2 diabetes within the last 2 years, was recruited from four health care centres. Narrative thematic interviews were used covering the areas of developing, coping with and living with diabetes. Qualitative content analysis was performed.

Findings. The findings were formulated into six categories: image of the disease, meaning of the diagnosis, integration of the illness, space for the illness, responsibility for care and future prospects.

Conclusions. The findings demonstrate that patients' personal understanding of illness is an important complement to the traditional professional view of diabetes. They could serve as a foundation for development of health history interviewing, as well as development of systems of documentation. Patients' personal understandings of diabetes in their daily lives are considered to be an important shared source of information for planning meaningful care.

Keyword
Adaptation; Psychological, Aged, Aged; 80 and over, Attitude to Health, Diabetes Mellitus; Type 2/diagnosis/*psychology, Female, Humans, Male, Middle Aged, Patient Care, Patient Participation/methods, Prospective Studies, Sweden
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-6693 (URN)10.1111/j.1365-2648.2004.03076.x (DOI)15196191 (PubMedID)
Available from: 2008-09-10 Created: 2008-09-10 Last updated: 2017-12-14Bibliographically approved
2. Psychosocial maturity among people with diabetes mellitus
Open this publication in new window or tab >>Psychosocial maturity among people with diabetes mellitus
2002 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 11, no 6, 777-784 p.Article in journal (Refereed) Published
Abstract [en]

There is a relationship between coping with chronic illness and a person's psychosocial development.

The aim of this study was to describe dimensions of psychosocial development based on results of a previous factor analysis of the Modified Erikson Psychosocial Stage Inventory among people with type 2 diabetes.

Interviews were carried out with 10 people with diabetes. The transcribed interviews were analysed by qualitative content analysis into main categories, categories and themes.

The categories were trust, lack of trust, positive identity, identity confusion, integrity and lack of integrity. Themes that permeated the categories in a positive way were 'activity' and 'involvement', while themes that permeated the categories in a negative way were 'passivity' and 'alienation'. Our interpretation is that the category 'trust' is the basis for 'identity', and together 'trust' and 'identity' are the basis for maturity and 'integrity'.

A conclusion is that positive psychosocial maturity has to do with attaining trust, identity and integrity through activity and involvement. Qualities important for maturation through trust, identity and integrity are understanding, capacity, purposefulness and fortitude. Our interpretation of maturity is considered as being an important and interesting focus in nursing, while the above related qualities are closely connected to coping with diabetes.

Keyword
identity, integrity, maturity, trust, type 2 diabetes
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-3923 (URN)10.1046/j.1365-2702.2002.00689.x (DOI)12427183 (PubMedID)
Available from: 2004-05-05 Created: 2004-05-05 Last updated: 2017-12-14Bibliographically approved
3. Patient satisfaction with diabetes care
Open this publication in new window or tab >>Patient satisfaction with diabetes care
2005 (English)In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 51, no 6, 609-617 p.Article in journal (Refereed) Published
Abstract [en]

Aim. The aim of this paper is to report the findings of a study that elucidated the experiences and reflections of people with type 2 diabetes about clinical encounters.

Background. Several patient satisfaction surveys have focused on privacy, cheerfulness and amenities rather than on how the care was delivered. A great deal of research has also focused on communication and various consultation styles, particularly within health promotion and diabetes care, but how these factors tie up with patient satisfaction has rarely been discussed. This study was performed in order to elucidate patients' perspectives about clinical encounters in diabetes care.

Method. Interviews were carried out during 2001 with 44 patients with diabetes. The transcribed interviews were analysed using qualitative content analysis.

Results. Five themes were connected to patient satisfaction and dissatisfaction, namely 'being in agreement vs. in disagreement about the goals'; 'autonomy and equality vs. feeling forced into adaptation and submission'; 'feeling worthy as a person vs. feeling worthless'; 'being attended to and feeling welcome vs. ignored'; and, lastly, 'feeling safe and confident vs. feeling unsafe and lacking confidence'.

Conclusion. Despite efforts to individualize diabetes care and find ways to communicate with patients, many people have experiences of clinical encounters that they find dissatisfying. Experiences of dissatisfying encounters have elements that may threaten their perception of self and identity, while elements included in satisfying encounters are those characterizing patient-centred care.

Keyword
Adult, Aged, Aged; 80 and over, Attitude of Health Personnel, Attitude to Health, Blood Glucose/analysis, Clinical Competence, Diabetes Mellitus; Type 2/nursing/psychology/*therapy, Female, Goals, Humans, Male, Middle Aged, Patient Satisfaction, Personal Autonomy, Professional-Patient Relations
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-6674 (URN)10.1111/j.1365-2648.2005.03546.x (DOI)16129011 (PubMedID)
Available from: 2008-06-27 Created: 2008-06-27 Last updated: 2017-12-14
4. Nurses' experiences of conflicting encounters in diabetes care
Open this publication in new window or tab >>Nurses' experiences of conflicting encounters in diabetes care
2008 (English)In: European Diabetes Nursing, ISSN 1551-7853, E-ISSN 1551-7861, Vol. 5, no 2, 64-69 p.Article in journal (Refereed) Published
Abstract [en]

Aim: To describe nurses' experiences of encounters with patients in diabetes care.Methods: Focus-group interviews with 17 nurses about their experiences of caring for patients with diabetes. Interviews were analysed by qualitative content analysis.Results: Four themes described conflicts in their encounters with patients, disclosing a complex professional role as a diabetes nurse. Implementing guidelines at the same time as being patient-centred was found to be problematic. Nurses further viewed medical knowledge as being more important than life experience of diabetes. The nurses' comments were distanced from, and judgemental about, patients as a collective. Finally, the nurses felt comfortable in expert roles, but not in equal and mutual relationships with patients.Conclusion: The interviews identified a feeling of frustration over conflicting demands between different goals and ideologies for diabetes care. These conflicts may also arise from the difficulty of integrating medical goals and patients' life experiences of illness.

Keyword
Diabetes nurses, patient education, encounters, conflicts, empowerment, patient-centred approach
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-19114 (URN)10.1002/edn.112 (DOI)
Available from: 2009-03-04 Created: 2009-03-04 Last updated: 2017-12-13
5. Metabolic improvement after intervention focusing on personal understanding in type 2 diabetes.
Open this publication in new window or tab >>Metabolic improvement after intervention focusing on personal understanding in type 2 diabetes.
2005 (English)In: Diabetes Research and Clinical Practice, ISSN 0168-8227, E-ISSN 1872-8227, Vol. 68, no 1, 65-74 p.Article in journal (Refereed) Published
Abstract [en]

The aim of this study was to evaluate, whether an educational intervention, focusing on patients' personal understanding of their illness, was more effective than care given according to national guidelines for diabetes care. METHODS: An intervention group (n = 44), with type 2 diabetes was compared with a control group (n = 60), with HbA1c as the primary outcome. The intervention included ten group sessions addressing themes related to the patients' personal understanding of their illness. The diabetes nurses involved were educated in theories about illness/wellness experiences and participated in group sessions where various caring strategies related to the patients' individual needs and understanding were reflected upon. RESULTS: At 1-year follow-up the intervention group showed lower HbA1c levels (mean difference 0.94%; P < 0.001), lower triglycerides (mean difference 0.52 mmol/l; P = 0.002) and higher high-density lipoprotein (mean difference 0.15 mmol/l; P = 0.029) and treatment satisfaction than did the control group. The differences remained when adjusting for age, gender, body mass index or changed treatment during the intervention period. Within the intervention group, BMI and treatment satisfaction were also improved. CONCLUSION: The intervention, which focused on patients' personal understanding of illness, was found to be effective in terms of metabolic control and treatment satisfaction.

Keyword
Aged, Cholesterol; HDL/blood, Cholesterol; LDL/blood, Diabetes Mellitus; Type 2/*metabolism/*nursing/therapy, Female, Hemoglobin A; Glycosylated/metabolism, Humans, Male, Middle Aged, Patient Education as Topic/*methods, Patient Satisfaction, Patient-Centered Care/*methods, Primary Health Care/methods, Psychotherapy; Group, Treatment Outcome, Triglycerides/blood
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-6742 (URN)10.1016/j.diabres.2004.08.003 (DOI)15811567 (PubMedID)
Available from: 2008-06-27 Created: 2008-06-27 Last updated: 2017-12-14

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