Learning to live with diabetes - as experiencing an expanding life world

Introduction: Chronic illness, such as diabetes, results in a transition process involving a variety of changes in both bodily function and conditions for living, and requiring broad knowledge and understanding in order to meet new demands. The outcomes of a healthy transition are described as well-being and mastery, in contrast to vulnerability and dependency. Little is known about how time for experience contributes to the transition of living with a chronic illness. Aim: The overall aim of the thesis was to illuminate the transition of living with diabetes during the first three years after diagnosis, in order to reach an understanding of how better to create more person-centred care. Design: The study has a life world phenomenological approach with a longitudinal, descriptive and interpretive design. Thirteen participants were interviewed within two months after diagnosis and again after three years. A selected sample approach was used. For study I a qualitative inductive content analysis was used and for study II a phenomenological-hermeneutic method. Findings: In study I four themes were found; ‘taken over by a new reality,’ ‘the body plays a role in life’, ‘different ways of learning’ and ‘the health care service as a necessary partner’ and in study II one overall theme; Experience for understanding the individual meaning of freedom and control in living with diabetes and two themes ´Solving the life-puzzle – a delicate balance to create the desired life´ and ´The need for being in control of your own health´. Discussion: For a healthy transition when living with diabetes, the ability to interact with others in order to share their experiences was crucial and contributed towards participants understanding themselves and their life world. In order to be able to interact, participants had to understand their body as a subject, interlaced with the self and the life, the lived body. Being able to listen to the body and interpret body cues and circumstantial information also contributed to a healthy transition. When the body with diabetes was objectified, a struggle ensued where incompatible needs were experienced and contradictory information created insecurity. The person then preferred not to interact with others but to be dependent on advice and information from the health care service. Conclusion: This study showed that duration of illness was not of importance for the understanding of living with diabetes. Three years after being diagnosed, living with diabetes meant an experience both of overall balance in one’s existence and of a daily struggle. Health care personnel are open to the unique experience of the person living with diabetes as well as to where the person is in the transition. Patient education in a group setting, with the goal of sharing experiences in a learning process, will be meaningful only if the person has the ability to interact with others

Living with diabetes : a lifelong learning process

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

Time and change: A typology for presenting research findings in qualitative longitudinal research

Background: Qualitative longitudinal research (QLR) is an emerging methodology used in health research. The method literature states that the change in a phenomenon through time should be the focus of any QLR study, but in empirical studies, the analysis of changes through time is often poorly described, and the emphasis on time/change in the findings varies greatly. This inconsistency might depend on limitations in the existing method literature in terms of describing how QLR studies can present findings. The aim of this study was to develop and describe a typology of alternative approaches for integrating time and/or change in QLR findings. Methods: In this method study, we used an adapted scoping review design. Articles were identified using EBSCOhost. In total, methods and results sections from 299 QLR articles in the field of health research were analyzed with inspiration from content analysis. Results: We constructed a typology of three types and seven subtypes. The types were based on the underlying structural principles of how time/change was presented: Type A) Findings have a low utilization of longitudinal data, Type B) Findings are structured according to chronological time, and Type C) Findings focus on changes through time. These types differed in 1) the way the main focus was on time, change or neither; 2) the level of interpretation in the findings; and 3) how theoretical understandings of time/change were articulated in the articles. Each type encompassed two or three subtypes that represented distinct approaches to the aim and results presentation of QLR findings. Conclusions: This method study is the first to describe a coherent and comprehensive typology of alternative approaches for integrating time/change into QLR findings in health research. By providing examples of various subtypes that can be used for results presentations, it can help researchers make informed decisions suitable to their research intent.publishedVersio

A pattern-oriented approach : Practical advice about longitudinal qualitative analysis procedures

Background: The number of published longitudinal qualitative studies has increased over the last couple of years. However, there is no consensus in how longitudinal analysis should be conducted or presented. Overall, little literature about the procedures of doing qualitative longitudinal analysis has been published. The aim of this presentation is to describe a procedure for conducting longitudinal qualitative analysis (e.g., a pattern oriented approach). Method: Independently of each other the two authors have developed a similar approach to analyze interview data over time. The two individual analyses have been compared and common features identified. Results: A pattern-oriented analysis focuses upon how individuals (or phenomena) move through a process/time in identifiable patterns. When other longitudinal analysis approaches might emphasize a main process, a pattern-oriented approach accounts for the individual variance in the context of time and change. The key features of the analysis procedure include; ‘identifying the process’, ‘summarized description’ and ‘using matrixes’. Conclusion: A pattern-oriented analysis is a fruitful way of viewing ways of changing over time and thus understanding complex life processes

Learning to live with diabetes : integrating an illness or objectifying a disease

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.Part of both Licentiate Theses and Doctoral Theses.Title in Licentiate Theses: Learning to live with diabetes : a balance or a struggle in the lived bodyPublication status in Licentiate Theses: Submitted</p

Idrottsrörelsen är inte anpassad för alla. Flickors erfarenheter om fysiska aktiviteter i och utanför den organiserade idrotten

The aim of this study is to provide an insight into how girls who do not participate in organized sports reason about physical activity. The study was designed with focus groups among 18 girls aged 9-12 years, 8 of them were followed up three years later. In the interviews, the girls’ own photographs were important to stimulate exchange of experiences. The results provide insight into how structural differences was experienced and handled by the girls and affect their physical activity. There is a lack of functioning outlets for physical activity following the more childish playing. The girls are aware of society’s expectations, but among those who did not start early with sports, it becomes more difficult the older they get. Neither the school’s sports, their own walking with friends, nor various more temporary activities with the family are enough to achieve the high goals for physical activity.Syftet är att ge en inblick i hur flickor som inte deltar i organiserad idrott resonerar om fysisk aktivitet. Studien designades med fokusgrupper bland 18 flickor i åldrarna 9-12 år, 8 av dem följdes också upp tre år senare. I intervjuerna användes fotografier tagna av flickorna själva för att stimulera till erfarenhetsutbyte. Resultaten ger inblick i hur olika strukturella skillnader upplevs, hanteras och påverkar flickornas fysiska aktivitet. Flickorna är väl medvetna om samhällets förväntningar, men bland de som inte började tidigt med idrott blir det svårare ju äldre de blir. Det saknas fungerande utlopp för fysisk aktivitet efter barnaårens lekande. Varken skolans idrott, det egna promenerandet med kompisar eller olika mer tillfälliga aktiviteter med familjen räcker för att nå de högt satta målen för fysisk aktivitet

Health-related stigma related to leprosy : What can be learned from nurses in Ghana?

The aim of the study was to describe nurses’ experiences of how stigma affected the care and health of patients with leprosy. Health-related stigma exists worldwide and affects patients, relatives and caregivers. Mere word ‘leprosy’ is often met with disgust, shame and fear. Knowledge of health-related stigma is important for developing care in different parts of the world. The study has a qualitative, descriptive design. Seven semi-structured individual interviews were conducted with nurses working at a hospital specializing in leprosy care. The study was carried out in the central region of Ghana. Data were analysed using qualitative content analysis. The findings are presented as one theme, ‘Increased knowledge and holistic interventions are important in care for patients with leprosy’, and three sub-themes: ‘knowledge and beliefs are intimately interlaced with leprosy-related stigma’, ‘information is important but not enough to change behaviours and attitudes’ and ‘long-term interventions in a social context’. We conclude that caring for patients with leprosy involved long-term interventions, not at least in relation to education on a society level as well as concerning patients’ abilities to learn a skill to make an income in order to be less dependent on healthcare facilities.Article first published online: July 6, 2017; Issue published: June 1, 2018</p

Learning to live with illness : experiences of persons with recent diagnoses of diabetes mellitus

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.Part of both Licentiate Theses and Doctoral Theses.Title in Licentiate Theses: Learning to live with illness: experiences of people recently diagnosed with diabetesPublication status in Licentiate Theses: Accepted</p

Barn- och ungdomsfotboll under Coronapandemin : de svenska erfarenheterna visar att folkhälsa är mer än smittskydd

Undersökningen är en fallstudie av hur föreningsfotbollen i Stockholm och de nationella förbunden hanterade Coronapandemin våren 2020. I Sverige poängterades det personliga ansvaret vilket medförde att föreningar och ideellt engagerade ledare gavs ett stort ansvar att tolka, hantera och kontrollera efterföljden av de rekommendationer och restriktioner som beslutades. Resultaten visar att det på alla nivåer fanns farhågor att även ett tillfälligt stopp av verksamheten kunde få långsiktiga negativa konsekvenser bland annat på grund av minskad fysisk aktivitet. En nyckelhändelse var att St Erikscupen kunde genomföras vilket under pandemin adderade den ovana rollen för de ideella ledarna att försöka hålla vissa hygienregler samt att se till så att det inte samlades mer än max 50 personer i samband med matcherna.This is a case study of how football associations in Stockholm handled the Corona pandemic in the spring of 2020. In Sweden, personal responsibility was emphasized, which meant that associations and voluntary leaders were given a great responsibility to interpret, manage and control compliance with the recommendations and restrictions decided. The results show that at all levels there were fears that even a temporary shut-down could have long term negative consequences. A key event was that the St Erikscup could be carried out, which during the pandemic added the unfamiliar role for the volunteers to try to keep certain hygiene rules and to ensure that no more than a maximum of 50 people gathered in connection with the matches