A survey study of family members' encounters with healthcare services within the care of older pe... more A survey study of family members' encounters with healthcare services within the care of older people, psychiatric care, palliative care and diabetes care
Check Your Health was constructed as four‐two‐sided vertical thermometers (0–100) measuring physi... more Check Your Health was constructed as four‐two‐sided vertical thermometers (0–100) measuring physical and emotional health, social well‐being and quality of life today and before onset of diabetes. Burden of diabetes was calculated as the difference between the two scores (today and before onset of diabetes). The aim was to examine concurrent and discriminant validity and reliability of Check Your Health in a convenience sample of 180 people with diabetes, who visited the diabetes clinic during a 3‐month period. A randomly selected subsample of 43 of the 180 patients responded to the questionnaire twice (test–retest). Besides Check Your Health, three additional questionnaires were mailed to the patients, the EVGFP scale (EVGFP stands for Excellent–Very good–Good–Fair–Poor health) for measuring concurrent validity, the Diabetes Empowerment Scale (Swe‐DES‐23) and an attitude measure, Semantic Differential in Diabetes (SDD) for calculation of discriminant validity. There was significant...
The aim of this study was to compare self-perceived health among diabetic patients who experience... more The aim of this study was to compare self-perceived health among diabetic patients who experienced threat of blindness with those who had already gone blind. Another aim was to explore different aspects of self-care in relation to self-perceived health among the subjects. Twenty-one diabetic patients under threat of becoming blind and 23 with diabetes-related blindness agreed to participate in the study. The participants were compared with an age-and gender-matched nondiabetic reference group. Self-perceived health was measured using the 63-item Swedish Health-Related Quality of Life Survey (SWED-QUAL) questionnaire. Data on diabetes-related variables were collected from the patient's hospital records. An interview guide was created for measuring dimensions of self-care. Patients with threat of becoming blind showed better self-perceived health than blind patients, but no differences were found in comparison with the Swedish reference group. Blind patients scored lower in 6 of the 13 health domains and they reported more problems with diabetes self-care than patients with threat of becoming blind. One of the 13 health domains, role limitations due to physical health, seemed to be associated with impaired self-care although only a partial understanding could be demonstrated. The results show that blind patients need specific support to cope well with different self-care situations. A great challenge in future research in diabetes is to implement education programs suitable especially for patients who have gone blind because of diabetes.
The aims of this study were: (1) to explore perceptions of power in blind individuals and relate ... more The aims of this study were: (1) to explore perceptions of power in blind individuals and relate presence or absence of power to self-perceived health and (2) to compare self-perceived health in blind individuals with that of the general population. The theoretical framework of this study was Barrett's Power theory, which is based on The Rogerian nursing theory. Power is defined as being aware of what one is choosing to do, feeling free to doing it, and do it intentionally. Thirty-nine blind subjects at three adjacent ophthalmology centres agreed to participate in the study. Of those 23 had become blind because of late complications of diabetes. Power was explored during semi-structured interviews and self-perceived health was measured with the Swedish health-related quality of life questionnaire. Data on socio-economic, rehabilitative and diabetes-related variables were also collected. Power was experienced by 19 of the 39 respondents and was more frequently found in nondiabetic subjects than in diabetic subjects. Those experiencing power reported a better emotional and general health compared with individuals lacking power. The perception of having power was not significantly related to any other of the studied variables. When compared with age- and gender-matched controls from the general population, nondiabetic blind subjects scored higher in positive feelings and lower in physical functioning. In contrast diabetic subjects experienced poorer general health, less satisfaction with physical health and more negative feelings, but they reported that they did not experience limitation as a result of these emotions. One way of improving health in diabetic blind individuals could be to increase the subject's perception of power.
Background: Individuals with blindness caused by diabetes face problems in their daily life that ... more Background: Individuals with blindness caused by diabetes face problems in their daily life that are related to both conditions. Hopefully some of these problems can be solved and simplified through a suitable educational programme. The aim of this study was to evaluate whether the educational programme 'I'm the boss' is suitable for blind individuals with diabetes, and to discover whether and how the programme inspired the participants in developing self-management skills. Methods: An ophthalmologic centre and two medical centres in a well-defined geographic area were screened for blind individuals with diabetes, resulting in the participation of nine individuals in the educational programme. The programme consisted of six three-hour-long weekly sessions based on empowerment and problem-based learning. Empowerment was measured using the Swedish version of the diabetes empowerment scale (Swe-DES-23). After completion of the programme, the participants were interviewed (focus group and individual interviews). The interviews were analysed using qualitative content analysis. Findings: The evaluation of the educational programme showed that almost half the participants improved their diabetes empowerment in the subscales 'self-awareness' and 'ability to manage stress'. The qualitative data corresponded well with the quantitative data in terms of increasing participants' self-efficacy and knowledge. The learning process was experienced as flexible and the content as stimulating and creative. Conclusion: It is concluded that the programme seems suitable for blind individuals with diabetes, and in collaboration with others allows space for innovation and self-realisation.
Background: Pregnant women with gestational diabetes mellitus (GDM) need information about the in... more Background: Pregnant women with gestational diabetes mellitus (GDM) need information about the increased risk of developing type 2 diabetes mellitus (T2DM) in later life. Aims: To investigate how women with GDM perceived information about this condition during pregnancy; to explore their opinions on healthcare provision up to one year after delivery; to investigate their perceptions about lifestyle a year after delivery. Methods: Ten women were interviewed using a semi-structured guide. Data were analysed using content analysis. Questions included reactions to receiving the diagnosis and perceptions about information given during pregnancy and current health. Results: Six of the women perceived that information given had been too sparse; the remaining four considered it useful to learn about the risk of developing T2DM in later life. Written information about GDM was considered very brief or non-existent. Care received after delivery was perceived to be positive. Group meetings arranged up to one year after childbirth were appreciated by all attendees. At these meetings, recommendations were given regarding food and physical exercise, but no follow-up was arranged to encourage more permanent lifestyle changes. Conclusion: Opportunities for women with GDM to meet others with the condition and receive specialist support need to be maximised, so that these women can become more knowledgeable and be encouraged to change their lifestyle. This may help prevent or delay the onset of T2DM.
The aim of the present study was to analyze whether strong sense of coherence (SOC) or power or t... more The aim of the present study was to analyze whether strong sense of coherence (SOC) or power or the combination of strong SOC and power was related to blind diabetic patients' self-perceived health, burden of diabetes, glycaemic control and self-care among blind people. In some variables we wanted to compare subjects with diabetes-related blindness with people who were blind for other reasons than diabetes. The present descriptive study included 39 blind subjects from three ophthalmic outpatient clinics who agreed to participate; 23 were blind due to diabetes and 16 were blind for other reasons. Power was explored during semi-structured interviews, SOC was measured with the SOC-scale and burden of diabetes with semantic differential in diabetes (SDD) questionnaires. A single Likert scale (EVGFP) was used to measure self-perceived health. Participants with the combination of strong SOC and power perceived better health, experienced less burden of diabetes and had better glycaemic control than those with the combination of weak SOC and non-power. Nearly all participants with diabetes experienced problems with self-care, especially with the insulin treatment. The results highlight the importance of education that increases SOC and power as well as developing visual aids that assist blind people with diabetes in different self-care situations.
Background The transition from paediatric to adult care for young adults with type 1 diabetes pos... more Background The transition from paediatric to adult care for young adults with type 1 diabetes poses unique challenges. Virtual diabetes clinics using smartphone applications offer a promising approach to support selfmanagement and enhance communication with healthcare providers. The primary objective of this study was to evaluate the effects of a virtual diabetes clinic on glycaemic control, treatment satisfaction, and quality of life among young adults diagnosed with type 1. Methods 79 participants with type 1 diabetes aged 18-25 years were included in a prospective, single-centre, randomised, wait-list controlled trial. Participants were randomly assigned to either the intervention group or the wait-list control group. The intervention group received instant access to a virtual care platform called Vista Dialog, which facilitated real-time communication between patients and healthcare providers. Glycosylated haemoglobin (HbA1c) levels, time in range (TIR), time below range (TBR), diabetes treatment satisfaction, and quality of life were assessed at baseline and after 6 months. Baseline characteristics were similar between the intervention and control groups, except for education level, where there was a skewed distribution between the groups (the intervention group had a lower education level). At the 6-month follow-up, there were no significant differences in HbA1c levels, TIR, TBR, or diabetes treatment satisfaction between the two groups. However, the intervention group demonstrated a significant decrease in the burden on physical health compared with the control group, indicating an improved quality of life. The implementation of a virtual diabetes clinic using the Vista Dialog platform did not result in significant improvements in glycaemic control or treatment satisfaction compared with usual care. However, it did show potential benefits in terms of reducing the burden on physical health and improving quality of life in young adults with type 1 diabetes. Further research is needed to explore the long-term effects and optimal use of virtual clinics in diabetes management.
IntroductionThe prevalence and costs of type 2 diabetes are increasing worldwide. A cornerstone i... more IntroductionThe prevalence and costs of type 2 diabetes are increasing worldwide. A cornerstone in the treatment and care of diabetes is supporting each patient in self-management. In Sweden, most patients with type 2 diabetes are cared for in the primary care setting, which is heavily burdened. Because of implementation difficulties regarding evidenced-based diabetes self-management education and support in this setting, there is a need for an instrument that is easy to use and implement. We developed an individual care plan based on the self-care deficit nursing theory of Dorothea Orem as an instrument to facilitate more individualised self-care support for patients with type 2 diabetes. In this study, we aim to determine whether a written, theory-based, individual goal-based plan for patients with type 2 diabetes and self-management deficits can affect their glycaemic control and health-related quality of life, as well as their experiences of living with diabetes and of support f...
An intervention with a person-centered program, guided self-determination-young, in groups of ado... more An intervention with a person-centered program, guided self-determination-young, in groups of adolescents starting on insulin pump : a randomized controlled trial
Extern granskning av rapporten: Patientutbildning vid diabetes - En systematisk litteraturoversik... more Extern granskning av rapporten: Patientutbildning vid diabetes - En systematisk litteraturoversikt, utgiven av SBU-statens beredning for medicinsk utvardering. Rapporten redovisar det vetenskapliga ...
This article describes a study of the phenomenon of supporting patients who are learning to live ... more This article describes a study of the phenomenon of supporting patients who are learning to live with diabetes, from a diabetes specialist nurse (DSN) perspective. Guided by principles of reflective lifeworld research, data from six interviews (four in groups and two individual) with 16 DSNs were analysed. The results show that, in order to support learning, DSNs use a self-critical approach with the insight that they should not take over responsibility for their patients' diabetes. The DSNs support, encourage and challenge the patients to self-reflect and take responsibility based on patients' own goals and needs. To provide support, DSNs need to assume a tactful, critically challenging approach, dare to confront patients' fears and other emotions and have the insight to know that the responsibility for learning and integration of the condition lies with the patient. To be able to support patients in this way, it is necessary that the DSN is mentored and supported in th...
International journal of qualitative studies on health and well-being, 2016
Learning to live with diabetes in such a way that the new conditions will be a normal and natural... more Learning to live with diabetes in such a way that the new conditions will be a normal and natural part of life imposes requirements on the person living with diabetes. Previous studies have shown that there is no clear picture of what and how the learning that would allow persons to incorporate the illness into their everyday life will be supported. The aim of this study is to describe the phenomenon of support for learning to live with diabetes to promote health and well-being, from the patient's perspective. Data were collected by interviews with patients living with type 1 or type 2 diabetes. The interviews were analysed using a reflective lifeworld approach. The results show that reflection plays a central role for patients with diabetes in achieving a new understanding of the health process, and awareness of their own responsibility was found to be the key factor for such a reflection. The constituents are responsibility creating curiosity and willpower, openness enabling s...
The research field of patient learning and patient education is growing due to the high prevalenc... more The research field of patient learning and patient education is growing due to the high prevalence of people living with lifelong disease and illness. The aim of the present article is to argue for and describe the building of a Nordic Network for Patient Education and Learning. The article describes the Network and the activities, theoretical framework and ongoing research within the Network. If patients’ voices are to be heard within healthcare settings, patient learning and patient education are of the utmost importance. Furthermore, it is essential to share experiences from the research we have conducted and are currently carrying out with nurses in Nordic countries as well as around the world.
A survey study of family members' encounters with healthcare services within the care of older pe... more A survey study of family members' encounters with healthcare services within the care of older people, psychiatric care, palliative care and diabetes care
Check Your Health was constructed as four‐two‐sided vertical thermometers (0–100) measuring physi... more Check Your Health was constructed as four‐two‐sided vertical thermometers (0–100) measuring physical and emotional health, social well‐being and quality of life today and before onset of diabetes. Burden of diabetes was calculated as the difference between the two scores (today and before onset of diabetes). The aim was to examine concurrent and discriminant validity and reliability of Check Your Health in a convenience sample of 180 people with diabetes, who visited the diabetes clinic during a 3‐month period. A randomly selected subsample of 43 of the 180 patients responded to the questionnaire twice (test–retest). Besides Check Your Health, three additional questionnaires were mailed to the patients, the EVGFP scale (EVGFP stands for Excellent–Very good–Good–Fair–Poor health) for measuring concurrent validity, the Diabetes Empowerment Scale (Swe‐DES‐23) and an attitude measure, Semantic Differential in Diabetes (SDD) for calculation of discriminant validity. There was significant...
The aim of this study was to compare self-perceived health among diabetic patients who experience... more The aim of this study was to compare self-perceived health among diabetic patients who experienced threat of blindness with those who had already gone blind. Another aim was to explore different aspects of self-care in relation to self-perceived health among the subjects. Twenty-one diabetic patients under threat of becoming blind and 23 with diabetes-related blindness agreed to participate in the study. The participants were compared with an age-and gender-matched nondiabetic reference group. Self-perceived health was measured using the 63-item Swedish Health-Related Quality of Life Survey (SWED-QUAL) questionnaire. Data on diabetes-related variables were collected from the patient's hospital records. An interview guide was created for measuring dimensions of self-care. Patients with threat of becoming blind showed better self-perceived health than blind patients, but no differences were found in comparison with the Swedish reference group. Blind patients scored lower in 6 of the 13 health domains and they reported more problems with diabetes self-care than patients with threat of becoming blind. One of the 13 health domains, role limitations due to physical health, seemed to be associated with impaired self-care although only a partial understanding could be demonstrated. The results show that blind patients need specific support to cope well with different self-care situations. A great challenge in future research in diabetes is to implement education programs suitable especially for patients who have gone blind because of diabetes.
The aims of this study were: (1) to explore perceptions of power in blind individuals and relate ... more The aims of this study were: (1) to explore perceptions of power in blind individuals and relate presence or absence of power to self-perceived health and (2) to compare self-perceived health in blind individuals with that of the general population. The theoretical framework of this study was Barrett's Power theory, which is based on The Rogerian nursing theory. Power is defined as being aware of what one is choosing to do, feeling free to doing it, and do it intentionally. Thirty-nine blind subjects at three adjacent ophthalmology centres agreed to participate in the study. Of those 23 had become blind because of late complications of diabetes. Power was explored during semi-structured interviews and self-perceived health was measured with the Swedish health-related quality of life questionnaire. Data on socio-economic, rehabilitative and diabetes-related variables were also collected. Power was experienced by 19 of the 39 respondents and was more frequently found in nondiabetic subjects than in diabetic subjects. Those experiencing power reported a better emotional and general health compared with individuals lacking power. The perception of having power was not significantly related to any other of the studied variables. When compared with age- and gender-matched controls from the general population, nondiabetic blind subjects scored higher in positive feelings and lower in physical functioning. In contrast diabetic subjects experienced poorer general health, less satisfaction with physical health and more negative feelings, but they reported that they did not experience limitation as a result of these emotions. One way of improving health in diabetic blind individuals could be to increase the subject's perception of power.
Background: Individuals with blindness caused by diabetes face problems in their daily life that ... more Background: Individuals with blindness caused by diabetes face problems in their daily life that are related to both conditions. Hopefully some of these problems can be solved and simplified through a suitable educational programme. The aim of this study was to evaluate whether the educational programme 'I'm the boss' is suitable for blind individuals with diabetes, and to discover whether and how the programme inspired the participants in developing self-management skills. Methods: An ophthalmologic centre and two medical centres in a well-defined geographic area were screened for blind individuals with diabetes, resulting in the participation of nine individuals in the educational programme. The programme consisted of six three-hour-long weekly sessions based on empowerment and problem-based learning. Empowerment was measured using the Swedish version of the diabetes empowerment scale (Swe-DES-23). After completion of the programme, the participants were interviewed (focus group and individual interviews). The interviews were analysed using qualitative content analysis. Findings: The evaluation of the educational programme showed that almost half the participants improved their diabetes empowerment in the subscales 'self-awareness' and 'ability to manage stress'. The qualitative data corresponded well with the quantitative data in terms of increasing participants' self-efficacy and knowledge. The learning process was experienced as flexible and the content as stimulating and creative. Conclusion: It is concluded that the programme seems suitable for blind individuals with diabetes, and in collaboration with others allows space for innovation and self-realisation.
Background: Pregnant women with gestational diabetes mellitus (GDM) need information about the in... more Background: Pregnant women with gestational diabetes mellitus (GDM) need information about the increased risk of developing type 2 diabetes mellitus (T2DM) in later life. Aims: To investigate how women with GDM perceived information about this condition during pregnancy; to explore their opinions on healthcare provision up to one year after delivery; to investigate their perceptions about lifestyle a year after delivery. Methods: Ten women were interviewed using a semi-structured guide. Data were analysed using content analysis. Questions included reactions to receiving the diagnosis and perceptions about information given during pregnancy and current health. Results: Six of the women perceived that information given had been too sparse; the remaining four considered it useful to learn about the risk of developing T2DM in later life. Written information about GDM was considered very brief or non-existent. Care received after delivery was perceived to be positive. Group meetings arranged up to one year after childbirth were appreciated by all attendees. At these meetings, recommendations were given regarding food and physical exercise, but no follow-up was arranged to encourage more permanent lifestyle changes. Conclusion: Opportunities for women with GDM to meet others with the condition and receive specialist support need to be maximised, so that these women can become more knowledgeable and be encouraged to change their lifestyle. This may help prevent or delay the onset of T2DM.
The aim of the present study was to analyze whether strong sense of coherence (SOC) or power or t... more The aim of the present study was to analyze whether strong sense of coherence (SOC) or power or the combination of strong SOC and power was related to blind diabetic patients' self-perceived health, burden of diabetes, glycaemic control and self-care among blind people. In some variables we wanted to compare subjects with diabetes-related blindness with people who were blind for other reasons than diabetes. The present descriptive study included 39 blind subjects from three ophthalmic outpatient clinics who agreed to participate; 23 were blind due to diabetes and 16 were blind for other reasons. Power was explored during semi-structured interviews, SOC was measured with the SOC-scale and burden of diabetes with semantic differential in diabetes (SDD) questionnaires. A single Likert scale (EVGFP) was used to measure self-perceived health. Participants with the combination of strong SOC and power perceived better health, experienced less burden of diabetes and had better glycaemic control than those with the combination of weak SOC and non-power. Nearly all participants with diabetes experienced problems with self-care, especially with the insulin treatment. The results highlight the importance of education that increases SOC and power as well as developing visual aids that assist blind people with diabetes in different self-care situations.
Background The transition from paediatric to adult care for young adults with type 1 diabetes pos... more Background The transition from paediatric to adult care for young adults with type 1 diabetes poses unique challenges. Virtual diabetes clinics using smartphone applications offer a promising approach to support selfmanagement and enhance communication with healthcare providers. The primary objective of this study was to evaluate the effects of a virtual diabetes clinic on glycaemic control, treatment satisfaction, and quality of life among young adults diagnosed with type 1. Methods 79 participants with type 1 diabetes aged 18-25 years were included in a prospective, single-centre, randomised, wait-list controlled trial. Participants were randomly assigned to either the intervention group or the wait-list control group. The intervention group received instant access to a virtual care platform called Vista Dialog, which facilitated real-time communication between patients and healthcare providers. Glycosylated haemoglobin (HbA1c) levels, time in range (TIR), time below range (TBR), diabetes treatment satisfaction, and quality of life were assessed at baseline and after 6 months. Baseline characteristics were similar between the intervention and control groups, except for education level, where there was a skewed distribution between the groups (the intervention group had a lower education level). At the 6-month follow-up, there were no significant differences in HbA1c levels, TIR, TBR, or diabetes treatment satisfaction between the two groups. However, the intervention group demonstrated a significant decrease in the burden on physical health compared with the control group, indicating an improved quality of life. The implementation of a virtual diabetes clinic using the Vista Dialog platform did not result in significant improvements in glycaemic control or treatment satisfaction compared with usual care. However, it did show potential benefits in terms of reducing the burden on physical health and improving quality of life in young adults with type 1 diabetes. Further research is needed to explore the long-term effects and optimal use of virtual clinics in diabetes management.
IntroductionThe prevalence and costs of type 2 diabetes are increasing worldwide. A cornerstone i... more IntroductionThe prevalence and costs of type 2 diabetes are increasing worldwide. A cornerstone in the treatment and care of diabetes is supporting each patient in self-management. In Sweden, most patients with type 2 diabetes are cared for in the primary care setting, which is heavily burdened. Because of implementation difficulties regarding evidenced-based diabetes self-management education and support in this setting, there is a need for an instrument that is easy to use and implement. We developed an individual care plan based on the self-care deficit nursing theory of Dorothea Orem as an instrument to facilitate more individualised self-care support for patients with type 2 diabetes. In this study, we aim to determine whether a written, theory-based, individual goal-based plan for patients with type 2 diabetes and self-management deficits can affect their glycaemic control and health-related quality of life, as well as their experiences of living with diabetes and of support f...
An intervention with a person-centered program, guided self-determination-young, in groups of ado... more An intervention with a person-centered program, guided self-determination-young, in groups of adolescents starting on insulin pump : a randomized controlled trial
Extern granskning av rapporten: Patientutbildning vid diabetes - En systematisk litteraturoversik... more Extern granskning av rapporten: Patientutbildning vid diabetes - En systematisk litteraturoversikt, utgiven av SBU-statens beredning for medicinsk utvardering. Rapporten redovisar det vetenskapliga ...
This article describes a study of the phenomenon of supporting patients who are learning to live ... more This article describes a study of the phenomenon of supporting patients who are learning to live with diabetes, from a diabetes specialist nurse (DSN) perspective. Guided by principles of reflective lifeworld research, data from six interviews (four in groups and two individual) with 16 DSNs were analysed. The results show that, in order to support learning, DSNs use a self-critical approach with the insight that they should not take over responsibility for their patients' diabetes. The DSNs support, encourage and challenge the patients to self-reflect and take responsibility based on patients' own goals and needs. To provide support, DSNs need to assume a tactful, critically challenging approach, dare to confront patients' fears and other emotions and have the insight to know that the responsibility for learning and integration of the condition lies with the patient. To be able to support patients in this way, it is necessary that the DSN is mentored and supported in th...
International journal of qualitative studies on health and well-being, 2016
Learning to live with diabetes in such a way that the new conditions will be a normal and natural... more Learning to live with diabetes in such a way that the new conditions will be a normal and natural part of life imposes requirements on the person living with diabetes. Previous studies have shown that there is no clear picture of what and how the learning that would allow persons to incorporate the illness into their everyday life will be supported. The aim of this study is to describe the phenomenon of support for learning to live with diabetes to promote health and well-being, from the patient's perspective. Data were collected by interviews with patients living with type 1 or type 2 diabetes. The interviews were analysed using a reflective lifeworld approach. The results show that reflection plays a central role for patients with diabetes in achieving a new understanding of the health process, and awareness of their own responsibility was found to be the key factor for such a reflection. The constituents are responsibility creating curiosity and willpower, openness enabling s...
The research field of patient learning and patient education is growing due to the high prevalenc... more The research field of patient learning and patient education is growing due to the high prevalence of people living with lifelong disease and illness. The aim of the present article is to argue for and describe the building of a Nordic Network for Patient Education and Learning. The article describes the Network and the activities, theoretical framework and ongoing research within the Network. If patients’ voices are to be heard within healthcare settings, patient learning and patient education are of the utmost importance. Furthermore, it is essential to share experiences from the research we have conducted and are currently carrying out with nurses in Nordic countries as well as around the world.
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Papers by Janeth Leksell