| 1. |
- Lundin, Anette
(author)
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Rättfärdigade prioriteringar : en kvalitativ analys av hur personal i äldreomsorgen hanterar motstridiga verksamhetslogiker
- 2017
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Doctoral thesis (other academic/artistic)abstract
- This dissertation aims at contributing to social scientific knowledge about prevailing prioritizations in eldercarepractice by looking at an economic and a caring logic, and how these logics are overlapping, contradictory or comein conflict with each other. A more concrete aim is to understand how the personnel describe their work with orfor balance between the logics and their justifications prioritizations made in the care of older persons. The researchquestion is: How do personnel and care unit manager at a public nursing home understand and handle the twologics that govern care work for facilitating wellbeing of the residents. The aim and research question led to threesub-aims: 1) to analyze the personnel’s experiences of and meaning making about the care work they carry out, 2)to illuminate and problematize the two logics above, and 3)to analyze how the personnel justify their prioritizationsin prevailing context, and how their accountability have an effect on their professional identities.Empirical material was gathered through 13 individual interviews with care personnel and their care unitmanager at a public nursing home in Sweden. These interviews were complemented by a group interview. Thematerial was analyzed by the use of three methods: phenomenology (Paper I and II), reflexive analysis (Paper III),and a positioning analysis (Paper IV). Paper I found that the personnel understands the residents’ well-being asbeing characterized by feeling of being existentially touched. This essence is constituted by feeling freedom ofchoice, pleasure, and closeness to someone or something. In Paper II, the work for facilitating this kind of wellbeingwas characterized by three ambiguities: (i) freedom of choice for the older persons vs. institutionalconstraints, (ii) the residents' need for activation vs. wanting not to be activated, and (iii) the residents' need forroutine vs. the eldercarers' not being able to know what the residents need. Paper III showed that the care unitmanager created a hybrid of the two logics (economy is care and vice versa) and that the personnel oppose thishybrid. The opposition is shaped as the personnel divides their work in care and “those other things”. Thesefindings showed how interaction between the logics expresses itself in practice and that it is the personnel who hasto handle contradictions between the logics in their everyday care work. The positioning analysis in Paper IV hadthree levels. The first level showed how the carers align with their peers and that they find the organizationalframe, within which they have agency, changed due to increased workload. This change led to an order of priorities.The second level showed that the carers relate to three aspects when making accounts: the care itself, the olderpersons, and the media. The third level showed that the carers share a view of administration, cleaning, servingmeals, and filling up supplies, as not being parts of caring.The dissertation’s theoretical framework focused on theories on logics, accountability, and professionalidentity. The conclusion is that both logics are needed in order to facilitate the well-being of the older persons. Therelationships between the two logics are not always clear and if their contradictions are not illuminated, there is arisk for a care practice that does not facilitate the well-being of their residents. An important theoreticalcontribution is that logics of activities should be understood vertically (form political, through management, anddown to the level of practice) instead of horizontally. The practical implications emphasize the importance ofsupporting the personnel’s professional identity on the one hand, and discussing the logics on the other. Byunderstanding differences between definitions on management-level and practice level, a homogeneity can bereached.
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| 2. |
- Darcy, Laura
(author)
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The everyday life of young children through their cancer trajectory
- 2015
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Doctoral thesis (other academic/artistic)abstract
- The young child’s experiences of living with cancer are crucial to providing evidence based care. The overall aim of this thesis was to explore and describe experiences of health and functioning in the everyday life of young children with cancer, over a three year period from diagnosis, to provide insights and suggestions to improve evidence based care.The first and second papers in the series of four for this thesis used a qualitative content analysis to describe the child’s experiences shortly after diagnosis and six and 12 months later. The third paper used mixed methods to identify a comprehensive set of ICF-CY codes describing everyday health and functioning in the life of the young child with cancer. The fourth paper used the identified comprehensive set of ICF-CY codes to follow changes in everyday health and functioning over the study’s entire three year period from diagnosis.Entry into the health-illness transition was characterised by trauma and isolation. Health and functioning in everyday life was utterly changed and physical difficulties were at their peak. The passage through transition was characterised by an active striving on the part of the child to make a normal everyday life of the cancer experience. Difficulties affecting health and functioning in everyday life decreased and changed during the trajectory, though feelings of loneliness prevailed. A new period of stability in the child’s post treatment life was seen from two years after diagnosis and onwards, with (re)-entry to preschool/school and other social activities. However, an increase in difficulties with personal interactions with others and access to, and support from healthcare professionals was seen. Variances were seen within individual children’s’ trajectories.In summary it can be stated that the everyday life of young children with cancer changes over time and health care services are not always in phase with these changes. Young children living with cancer want to be participatory in their care and to have access to their parents as protectors.They need access to and ongoing contact with peers and preschool. Although physical difficulties in living an everyday life with cancer reduce over time, new difficulties emerge as the child post cancer treatment re-enters society. A structured follow-up throughout the cancer trajectory and not just during active treatment is necessary. A child-centered philosophy of care would guide the child towards attainment of health and well-being.Both the child’s own perspective and a child’s perspective as described by adults caring for them should be seen on a continuum, rather than as opposites. This view could help ensure that young children become visible and are listened to as valuable contributors to care planning. Knowledge of health-illness transition can be useful in illustrating everyday health and functioning through long term illness trajectories.
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| 3. |
- Högberg, Karin
(author)
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Web-based counselling to patients with haematological diseases
- 2015
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Doctoral thesis (other academic/artistic)abstract
- Patients with haematological diseases are entitled to supportive care. Considering organisational and technological development, support in the form of caring communication provided through the web is today a possible alternative. The aim of this thesis was to examine the usefulness and importance of a web-based counselling service to patients with haematological diseases. The basis for the thesis was a development project funded by the Swedish Cancer Society, which provided an opportunity to offer patients communication with a nurse through a web-based counselling service.Four studies were performed from a patient perspective. Study I had a cross-sectional design, measuring occurrence of anxiety and depression, and these variables’ associations to mastery, social support, and insomnia among patients with haematological diseases. Study II was a qualitative content analysis focusing on conditions for provision and use of the web-based counselling service. Study III used a qualitative hermeneutical approach to focus on patients’ experiences of using the counselling service. Study IV was a qualitative deductive analysis examining how communication within the web-based counselling service can be caring in accordance to caring theory.The results revealed that females of 30-49 years of age are vulnerable to experiencing anxiety. Low sense of mastery and support are associated with anxiety and/or depression. Being able to self-identify the need for support as well as appreciate the written medium are necessary conditions for the web-based counselling service to be used. The counselling service must also be part of a comprehensive range of supportive activities and web-based services to be useful. The main importance of the communication is that the patient’s influence on the communication is strengthened, and that the constant access to individual medical and caring assessment can imply a sense of safety. When patients share their innermost concerns and search for support, nursing compassion and competence can substantiate in explicit written responses.A conclusion is that there is a caring potential in communication within a web-based counselling service. To make this form of communication possible, nurses should take possession of and ensure that this medium for communication is offered to patients. Nurses should also increase their knowledge of caring communication in writing and how this possibly can impact patients.
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| 4. |
- Stenebrand, Agneta
(author)
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Dental anxiety among 15-year-olds : Psychosocial factors and oral health
- 2015
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Doctoral thesis (other academic/artistic)abstract
- AIM: The overall aim of this thesis was to examine the associations between dental anxiety, experiences of dental care, psychosocial factors and oral health among 15-year-olds, and to analyse changes in the prevalence of dental anxiety over time.MATERIALS AND METHODS: The thesis was based on two cross-sectional epidemiological studies in Jönköping, Sweden. Papers I, II, and III were based on a random sample of 15-year-old individuals. The total sample consisted of 221 individuals. Six questionnaires were used, one included items of background data, while the others were psychometric instruments measuring dental anxiety, temperament, general anxiety and depression, general fearfulness and attitudes to dental care. Paper IV was based on the Jönköping studies, a series of epidemiological studies from 1973, 1983, 1993, and 2003 in which random samples of 15-year-old individuals were included. The total sample consisted of 405 individuals. Questionnaires including background data and dental anxiety were used and clinical data were collected.RESULTS: Of the 15-year-old individuals 6.5% were classified as dentally anxious with girls proportionally more fearful than boys (Papers I-III). Dental anxiety correlated significantly with three of the temperament dimensions; emotionality, activity and impulsivity. Reported pain or unpleasant experiences during dental care treatment were clear predictors concerning dental anxiety (Paper I). Both symptoms of general anxiety and depression were significantly correlated with dental anxiety after controlling for other potential risk factors (Paper II). Dental anxiety was associated with both general fearfulness and with attitudes to dental care, where the strongest predictor of dental anxiety was general fearfulness (Paper III). A trend analysis over the 30-year period showed a gradient of statistically significantly decreasing dental anxiety prevalence, from 38.1% in 1973 to 12.8% in 2003. Over the period the 15-year-old individuals with dental anxiety had significantly higher number of filled tooth-surfaces than those with no dental anxiety, and also more caries in 1973. There were no such differences concerning plaque and gingivitis (Paper IV).CONCLUSIONS: Dental anxiety in 15-year-olds correlated with experiences of dental care, psychosocial factors as well as to oral health. Specifically, pain experiences related to dental care, attitudes to dental care and general fearfulness seem to have the strongest impact on dental anxiety. Dental anxiety showed a clear declining change over time. More girls than boys reported dental anxiety. The thesis shows that dental care providers need paying attention on providing a supportive dental care situation, in which the patients should not experience pain. One part may be adequate local anaesthesia during operative dentistry or similar dental treatments. Another part may be a good oral health to prevent negative experiences of dental care. There is a need for the understanding of psychological factors associated with dental care procedures.
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| 5. |
- Ahlstrand, Inger
(author)
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Pain and its relation to participation in valued activities in rheumatoid arthritis
- 2015
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Doctoral thesis (other academic/artistic)abstract
- There has been a dramatic change over the past two decades for persons with rheumatoid arthritis (RA) not only due to early diagnosis, structured treatment, and aggressive medication but also due to an increased demand of participation in work life and society. Despite these treatment changes, RA continues to impact these individuals’ participation in valued daily activities. Participation in valued daily activities provides wellbeing and the opportunity for engagement and participation. By persons with RA pain has been highlighted as one of the most restrictive symptoms. This thesis uses the International Classification of Functioning, Disability, and Health (ICF) as a conceptual framework to describe disability and how participation is related to pain.Aims: The overall aim of this thesis was to explore and describe the relationship between pain and participation in valued activities, in RA. Paper I compared pain and activity limitations in women and men with contemporary treated early RA with persons who were diagnosed ten years earlier. Paper II described experiences of pain and pain’s relationship with daily activities. Paper III examined difficulties performing valued life activities in relation to pain intensity. Paper IV described personal factors, including self-efficacy and pain acceptance, and studied whether personal factors are mediators of the relationbetween pain and performance of valued life activities.Methods: Different methodological approaches were used to provide a comprehensive understanding of pain and participation in valued activities in persons with RA. A prospective longitudinal cohort study was used to compare women and men treated with contemporary treated RA (n=276) with their counterparts ten years earlier (n=373) (Paper I). This study was followed by a focus group study where 33 persons with RA participated in seven focus groups (Paper II). Subsequently, Papers III and IV were conducted based on data from The Swedish Rheumatology Quality Registry (SRQ) and data from a postal questionnaire that gathered data on demographics, pain, personal factors, and participation in valued life activities (n=737). In addition, these studies used descriptive and analytical statistics with multiple regression and structural equation modelling (SEM).Results: Pain and activity limitations were still pronounced in women and men with RA despite recent treatment advances (Paper I). The relationship between participation and pain was dynamic and is related to fatigue, stress, and mood, factors that generated difficulties finding a suitable level of activity, resulting in difficulties balancing daily activities (Paper II). Both women and men reported restrictions in participation in valued life activities. Pain was identified as having an important relationship to difficulties performing valued life activities (Paper III). Personal factors were found important as mediators for pain in relation to participation (Paper IV).Conclusions: This thesis found a continued need for multidisciplinary interventions despite current treatments. Pain was identified as related to participation restrictions and had an important relationship to difficulties performing valued life activities. Pain and participation in valued activities needs to be comprehensively analysed and treated in the context of the person’s perspective and needs and demands of persons with RA. The subjective experience of participation, the engagement, must be highlighted. Personal factors mediated the relationship between pain and participation and this finding supports the value of self-management interventions to enable participation in valued activities
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| 6. |
- Ander, Birgitta, 1958-
(author)
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Ungdomars berusningsdrickande – Vem, var och med vilka?
- 2018
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Doctoral thesis (other academic/artistic)abstract
- The overall aim of this thesis is to investigate adolescent drinking to drunkenness and connected contextual factors. The thesis is based on four studies, addressing different aspects: The first explores arenas of adolescent drunkenness, and the meaning the adolescents attribute to them. The second investigates Swedish adolescents discourse on alcohol and parties, as well as positive and negative effects of alcohol consumption. The third reports on early onset, i.e. before the age of 14, in substance use, including alcohol drinking and drunkenness, and predicts this from various psychological and social factors. The forth examines contexts of drunkenness, i.e. where and with whom 15-year olds in Sweden get drunk. Furthermore, the importance of the place and social context for drunkenness in adolescence, and what importance and strategies young people themselves associate with their alcohol consumption are examined.The studies derive from two data samples. Articles I and II utilise qualitative methods and explore Swedish changing arenas for adolescent drunkenness and adolescent discourse on drunkenness and the importance of place and space. Article I stems from a qualitative interview-material with an ethnographic approach. Twenty-three adolescents (7 females and 16 males) from three small communities in the south of Sweden in the ages of 16 to18 were interviewed. The material also included contacts with outreach social workers on local, regional and national level as well participating observations. The data for Article II stems from the interviews with twenty-three adolescents. Article I was analysed through text-analysis and Article II through thematic analysis.Articles III and IV conduct quantitative analyses, and stems from the multidisciplinary research programme, Longitudinal Research on Development In Adolescence (LoRDIA) which follows adolescents from the age of 12 and 13 until they are 18 years old, focusing on substance use and misuse, health and ill-health, peer relations and school functioning through self-reported questionnaires. Different data collection waves were used, and combined them two and two, for cross-sectional analyses. Article III combined the first two waves and by doing so, covered 91 percent of the study population of 1896 students aged 13-14. Article IV combined all 1355 grade 9 students from waves 3 and 3b. Article III investigated early onset in substance use and was analysed with bivariate and multivariate logistic regression models. Article IV investigated frequency of drunkenness and different outcomes from drunkenness in different contexts, as well as with whom adolescents got drunk together with and the negative consequences of getting drunk.The result indicates a change from drinking to drunkenness at outdoor places. The outdoor places, both public and hidden, that has been used for adolescents socializing and drinking to drunkenness were empty. Homes, without present adults are the most common places for parties. The parties stand for mainly positive experiences and a break in everyday life. Being in a home arena allows for increased control, both over own drunkenness but also over who is allowed at the party and who is not. The dissertation also investigates early onset in use of alcohol and drunkenness and shows that delinquency, perceived parental permissions and availability of substances are the strongest factors predicting onset among 13-14-year-olds. The dissertation shows that most drunkenness experiences are reported in homes without adults present, not in outdoor and hidden places. Drinking in homes did not lower the association with high frequency of drunkenness, negative consequences or peer problems.The conclusion shows the importance of place and space in understanding adolescent drunkenness and partying.
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| 7. |
- Bäckström, Caroline
(author)
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Professional and social support for first-time mothers and partners during childbearing
- 2018
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Doctoral thesis (other academic/artistic)abstract
- Background: Expecting a child and becoming a parent is one of life’s major events, during which the parents’ perspective on life and their couple relationship changes. For some parents, childbearing entails a decrease in parental couple relationship quality. The way in which parents are able to cope with childbearing may be connected with their Sense of Coherence; which is a person’s ability to perceive life as comprehensible, manageable and meaningful. For parents’ positive childbearing experiences, professional and social support have been proven to be valuable. However, far from all parents have access to social support; furthermore, professional support does not always meet the needs of expectant parents. Hence, more research is needed to increase knowledge about expectant parents’ experiences of professiona land social support. In addition, more research is needed to explore factors associated with quality of couple relationship among parents during childbearing.Aims: The overall aim of the thesis was to explore professional and social support for first-time mothers and partners during childbearing in relation toquality of couple relationship and Sense of Coherence.Methods: The study’s designs were explorative, prospective and longitudinal; both qualitative and quantitative methods were used. Specifically, explorative designs, qualitative methods and phenomenographic analysis were used to explore expectant first-time mothers’ (I) and partners’ perceptions of professional support (II). Furthermore, an explorative design, qualitative method and qualitative content analysis were used to explore expectant first-time mothers’ experiences of social support (III). Within Study IV, a prospective longitudinal design, descriptive statistics, non-parametric tests and multiple linear regression analysis were used to evaluate factors associated with quality of couple relationship among first-time mothers and partners, during pregnancy and the first six months of parenthood.Results: The overall results of the thesis revealed both similarities and differences between expectant first-time mothers’ and partners’ perceptions of professional support, effects from social support and associated factors with perceived quality of couple relationship. The similarities were; both mothers and partners perceived that professional support could facilitate partner involvement, influence their couple relationship and facilitate contacts with other expectant parents. According to first-time mothers’ experiences, their couple relationship with their partner was also strengthened by social support during pregnancy. Further, the results showed that both first-time mothers’ and partners’ higher perceived couple relationship quality six months after birth, was associated with their higher perceived social support. The results showed also that both mothers and partners perceived their quality of couple relationship to decrease and Sense of Coherence to increase six months after childbirth, compared to the pregnancy. Differences revealed were such as: higher Sense of Coherence was only associated with mothers’ higher perceived quality of couple relationship, and first-time mothers reported perceiving more social support compared to the partners both during pregnancy, first week and six months after childbirth.Conclusions: Professional and social support can strengthen first-time mothers and partners both individually and as a couple, in their abilities to cope with childbearing. On the individual basis, the expectant parents could be strengthened through professional and social support that contributed to their understanding and feeling of being prepared for childbirth and parenting, for instance. As a couple, the parents were strengthened by professional support that included the partner’s role, as well as higher perceived social support overall. In contrast, lack of support could have a negative influence on the expectant parents’ feeling of being prepared for childbirth and parenting. Besides this, the results indicates that childbearing has a positive effect on parents’ abilities to cope with life even though their quality of couple relationship decrease. Professionals can use these results in their further understanding about how to offer satisfactory support to first-time mothers and partners during childbearing.
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| 8. |
- Carlsson, Emma
(author)
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The importance of psychological and physical stressors on diabetes-related immunity in a young population – an interdisciplinary approach
- 2016
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Doctoral thesis (other academic/artistic)abstract
- Background: The prevalence of immunological disorders such as type 1 diabetes (T1D) is increasingly common amongst children, adolescents and young adults. There is also an increase in psychosomatic symptoms (depression, insomnia, anxiety, headaches and fatigue etc.) as well as a decrease in physical activity amongst young people, affecting the well-being and overall health of our younger population. It is therefore important to study the effects of psychological and physical stressors on the immune system, to evaluate their impact on juvenile health.Aim: This thesis explores the impact of psychological and physical stressors on the cellular immune system with special focus on diabetes-related immunity in a young population, using an interdisciplinary approach.Method: When exploring the impact of psychological and physical stressors such as psychological stress due to exposure to psychological stressful experiences or degree of physical activity/training on the cellular immune system in children, adolescents and young women, peripheral blood mononuclear cells (PBMC) were stimulated with antigens (tetanus toxoid (TT) and β-lactoglobulin (βLG)) as well as diabetes-related autoantigens (insulin, heat shock protein 60 (HSP60), tyrosine phosphatase-2 (IA-2) and glutamic acid decarboxylase 65 (GAD65)) and secreted cytokines and chemokines were measured by multiplex fluorochrome technique (Luminex). Populations of Thelper (Th) cells (CD4+), T-cytotoxic (Tc) cells (CD8+), B cells (CD19+), Natural Killer (NK) cells (CD56+CD16+) as well as regulatory T (Treg) cells (CD4+CD25+FoxP3+CD127-), and their expression of CD39 and CD45RA were studied by flow cytometry. Diabetes-related parameters (glucose, C-peptide,proinsulin, pancreatic polypeptide and peptide YY) were measured to studyβ-cell activity and appetite regulation and cortisol was used as a biological marker for psychological and physical stress.Results: Children in families exposed to psychological stress showed an imbalanced cellular immune response as well as an increased immune response towards diabetes-related autoantigens. Also, previous exposure to psychological stress as well as current exposure to psychological stress in young women showed an increased immune response towards diabetes-related autoantigens. Further, previous exposure to psychological stress in young women showed increased numbers of circulating CD56+CD16+ NK cells as wellas decreased numbers of circulating CD4+CD25+FoxP3+CD127- Treg cells. High physical activity in children showed decreased spontaneous immune response as well as a decreased immune response towards diabetes-related autoantigens, while low physical activity in children showed an increased immune response towards diabetes-related autoantigens. Further, endurance training in adolescents, especially in adolescent males and young adolescents, showed an increased immune response towards the diabetes-related autoantigen IA-2.Conclusion: It is evident that psychological and physical stressors such as exposure to psychological stress and degree of physical activity/training impact the cellular immune system. Experiences associated with psychological stress seem to have a negative effect on the cellular immune system in a young population, causing an imbalance in the immune system that could possibly induce diabetes-related immunity. High physical activity in children seems to have a protective effect against diabetes-related immunity. In contrast, low physical activity in children and endurance training in adolescents seems to induce diabetes-related immunity. It is very likely that psychological stressful experiences, low physical activity and intense training such as endurance training all play important roles in the immunological process leading to the development of type 1 diabetes.
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| 9. |
- Dalteg, Tomas
(author)
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Partner relationship in couples living with atrial fibrillation
- 2016
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Doctoral thesis (other academic/artistic)abstract
- The aim of this thesis was to describe and explore how the partner relationship of patient–partner dyads isaffected following cardiac disease and, in particular, atrial fibrillation (AF) in one of the spouses.The thesis is based on four individual studies with different designs: descriptive (I), explorative (II, IV), and cross-sectional (III). Applied methods comprised a systematic review (I) and qualitative (II, IV) and quantitative methods (III). Participants in the studies were couples in which one of the spouses was afflicted with AF. Coherent with a systemic perspective, the research focused on the dyad as the unit of analysis. To identify and describe the current research position and knowledge base, the data for the systematic review were analyzed using an integrative approach. To explore couples’ main concern, interview data (n=12 couples) in study II were analyzed using classical grounded theory. Associations between patients and partners (n=91 couples) where analyzed through the Actor–Partner Interdependence Model using structural equation modelling (III). To explore couples’ illness beliefs, interview data (n=9 couples) in study IV were analyzed using Gadamerian hermeneutics.Study I revealed five themes of how the partner relationship is affected following cardiac disease: overprotection, communication deficiency, sexual concerns, changes in domestic roles, and adjustment to illness. Study II showed that couples living with AF experienced uncertainty as the common main concern, rooted in causation of AF and apprehension about AF episodes. The theory of Managing Uncertainty revealed the strategies of explicit sharing (mutual collaboration and finding resemblance) and implicit sharing (keeping distance and tacit understanding). Patients and spouses showed significant differences in terms of self-reported physical and mental health where patients rated themselves lower than spouses did (III). Several actor effects were identified, suggesting that emotional distress affects and is associated with perceived health. Patient partner effects and spouse partner effects were observed for vitality, indicating that higher levels of symptoms of depression in patients and spouses were associated with lower vitality in their partners. In study IV, couples’ core and secondary illness beliefs were revealed. From the core illness belief that “the heart is a representation of life,” two secondary illness beliefs were derived: AF is a threat to life, and AF can and must be explained. From the core illness belief that “change is an integral part of life,” two secondary illness beliefs were derived: AF is a disruption in our lives, and AF will not interfere with our lives. Finally, from the core illness belief that “adaptation is fundamental in life,” two secondary illness beliefs were derived: AF entails adjustment in daily life, and AF entails confidence in and adherence to professional care.In conclusion, the thesis result suggests that illness, in terms of cardiac disease and AF, affected and influenced the couple on aspects such as making sense of AF, responding to AF, and mutually incorporating and dealing with AF in their daily lives. In the light of this, the thesis results suggest that clinicians working with persons with AF and their partners should employ a systemic view with consideration of couple’s reciprocity and interdependence, but also have knowledge regarding AF, in terms of pathophysiology, the nature of AF (i.e., cause, consequences, and trajectory), and treatments. A possible approach to achieve this is a clinical utilization of an FSN based framework, such as the FamHC. Even if a formalized FSN framework is not utilized, partners should not be neglected but, rather, be considered a resource and be a part of clinical caring activities. This could be met by inviting partners to take part in rounds, treatment decisions, discharge calls or follow-up visits or other clinical caring activities. Likewise, interventional studies should include the couple as a unit of analysis as well as the target of interventions.
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| 10. |
- Einberg, Eva-Lena
(author)
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To promote health in children with experience of cancer treatment
- 2016
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Doctoral thesis (other academic/artistic)abstract
- The overall aim of this thesis was to develop knowledge about how to promote health in children treated for cancer and how health promotion interventions based on such knowledge can be evaluated. In this thesis, a descriptive and explorative design has been used, comprising both qualitative (Papers I-III) and quantitative (Papers I and IV) methods. A nationwide cohort of 144 childhood cancer survivors (24-42 years) answered a questionnaire about the support they had received from health care services (Paper I). Fifteen children (8-12years), with experience of cancer treatment, participated in five focus groups with two sessions per group (Paper II and III). The focus group methodology was combined with participatory and art-based techniques, such as draw and tell and photography. The children discussed what promotes health and what friendship is about. A methodological design was used to psychometrically test the Swedish version of the Minneapolis-Manchester Quality of Life instrument (MMQL) (Paper IV). The study included 950 pupils in grade 6 and 9 from seven primary schools. In addition to this, a comparison of the MMQL instrument with the health-promoting factors described by children in the focus groups was performed.The findings showed that there is a need for health-promoting factors, such as knowledge and psychosocial support, from health care services for childhood cancer survivors. Their family and friends may contribute with support and then serve as health-promoting factors. Health-promoting factors, according to children 8-12 years of age and with experience of cancer treatment, are meaningful relationships, recreational activities and a trustful environment. The children expressed a holistic view of what promotes their health. Friendship, from the perspective of the children, is a process of equal and mutual commitment that develops over time and with interactions occurring face-to-face and digitally. The MMQL instrument may be valid and reliable in a sample of healthy children. However, less than one-third of the items in the MMQL instrument could be linked to the health-promoting factors that the children participating in the focus groups highlighted. In conclusion, the findings in this thesis contribute knowledge from a participant perspective regarding the needs and the experiences of health-promoting factors for those who have received treatment for cancer. This knowledge could form a basis for development of health promotion interventions aimed at children who have received treatment for cancer. It is suggested that if the MMQL instrument is used to evaluate health promotion among children who have received treatment for cancer, the MMQL should be complemented with items that capture aspects of health that are important to the children.
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