Gullvi Flensner

Obese women's experiences of encounters with midwives and physicians during pregnancy and childbirth

OBJECTIVE to describe obese womens experiences of encounters with midwives and physicians during pregnancy and childbirth. DESIGN a qualitative study using a phenomenological approach. Data were collected by means of interviews that were tape-recorded. SETTING the womens homes or at a hospital in western Sweden. PARTICIPANTS 10 women with body mass index >30, three primiparous and seven multiparous, who had given birth at a hospital in western Sweden in the period between October 2006 and September 2007 were interviewed four to six weeks after childbirth. FINDINGS the meaning of being both obese and pregnant is living with a constant awareness of the body, and its constant exposure to the close observation and scrutiny of others. It involves negative emotions and experiences of discomfort. Feelings of discomfort increase as a result of humiliating treatment, whilst affirmative encounters alleviate discomfort and provide a sense of wellbeing. CONCLUSION AND IMPLICATIONS FOR PRACTICE obese pregnant women are a vulnerable group because obesity is highly visible. Caregivers tend to focus on providing care to obese patients somatically, but are additionally in need of knowledge about care from the womans point of view. Many obese women have negative experiences of health care that they have to overcome. It is necessary to individualise care for obese pregnant women, which involves taking time to give the women an opportunity to tell their own story. Caregivers have to promote health but it has to be done honestly and respectfully. In order to avoid judgemental attitudes and causing increased suffering for obese pregnant women, midwives and physicians need to be conscious of, reflect upon and verbalise their own attitudes and power.

Lived experience of MS-related fatigue : a phenomenological interview study

UNLABELLED Fatigue is a major problem among individuals diagnosed with multiple sclerosis (MS), but its meaning in daily living is unclear. The aim was to describe MS-related fatigue as lived by a group of individuals diagnosed with MS. Interviews with nine individuals were analysed from a phenomenological perspective. MAIN FINDINGS MS-related fatigue is living with a time-consuming and all absorbing phenomenon, involving the body and the whole human being. Fatigue is commonly non-constructively perceived and expressed in terms of energy loss, emotional afflictions, dependency and restrictions of life in general, however, it is also constructively perceived and involves a desire to accept life and strive for a better situation. CONCLUSION MS-related fatigue is a comprehensive phenomenon and its relationship with self-care requires further investigation.

Sensitivity to heat in MS patients: a factor strongly influencing symptomology - an explorative survey

BackgroundMany individuals diagnosed with Multiple Sclerosis (MS) are sensitive to increased body temperature, which has been recognized as correlating with the symptom of fatigue. The need to explore this association has been highlighted. The aim of this study was to investigate the occurrence of heat sensitivity and its relations to disease course, disability, common MS-related symptoms and ongoing immunosuppressive treatments among individuals 65 years of age or younger diagnosed with MS.MethodsA cross-sectional designed survey was undertaken. A questionnaire was sent to MS-patients with an Expanded Disability Status Score (EDSS) in the interval of 0-6.5 and who were between 20 and 65 years of age, living in an eastern region of Sweden (n = 334). Besides occurrence of heat sensitivity (Yes/No) and corresponding questions, the Fatigue Severity Scale (FSS), the MS-related symptom checklist and the Perceived Deficit Questionnaire (PDQ) were included. Data were analysed in relation to data level using Chi-square, Mann Whitney U-test, and Students t-test. Pearsons and Spearmans correlations were calculated. In the logistic regression analyses (enter) dichotomized MS-symptoms were used as dependent variables, and EDSS, disease-course, time since onset, heat-sensitivity, age and sex (female/male) were independent variables. In the linear regression analyses, enter, mean FSS and summarized PDQ were entered as dependent variables and EDSS, disease-course, time since onset, heat sensitivity, age and sex (female/male) were independent variables.ResultsOf the responding patients (n = 256), 58% reported heat sensitivity. The regression analyses revealed heat sensitivity as a significant factor relating not only to fatigue (p < 0.001), but also to several other common MS symptoms such as pain (p < 0.001), concentration difficulties (p < 0.001), and urination urgency (p = 0.009).ConclusionsHeat sensitivity in MS patients is a key symptom that is highly correlated with disabling symptoms such as fatigue, pain, concentration difficulty and urination urgency.

Thalamo-striato-cortical determinants to fatigue in multiple sclerosis.

The aim was to explore the thalamo‐striato‐cortical theory of central fatigue in multiple sclerosis (MS) patients with self‐reported fatigue. If the theory correctly predicted fatigue based on disruptions of the thalamo‐striato‐cortical network, we expected altered brain activation in this network in MS participants while performing a complex cognitive task that challenged fatigue.

Reliability and validity of the Swedish version of the Fatigue Impact Scale (FIS)

Fatigue is a complex phenomenon that, for those not affected, is hard to understand. To achieve better assessments, caregivers need reliable and valid tools. The aim of this study was to investigate the reliability and validity of the Swedish version of the Fatigue Impact Scale (FIS) among working-aged individuals diagnosed with multiple sclerosis (MS), as well as in a comparative group randomly selected from the general population in the same geographical area. Both individuals with MS (n=161) and individuals recruited from the general population (n=194) participated in the study. A questionnaire was used for the data collection. The data were analysed using non-parametric statistical methods. Reliability of FIS was addressed by item-to-item and item-to-total correlations. Concurrent validity was tested for by analysing correlations between the FIS and general questions, and construct validity by investigation of differences in the FIS scores between known groups. The FIS was found to be homogenous, with item-to-total correlation coefficients of 0.42 ≤ rs≤0.86 (p<0.001), reflecting the instruments reliability. The correlations between the FIS and the general questions confirm its concurrent validity, 0.27 ≤ rs≤0.84 (p<0.001). The differences in FIS scores between known groups demonstrate its construct validity. Furthermore, the FIS showed the ability to discriminate between groups of individuals with differences in perceived impact of fatigue.

Living with an adult family member using advanced medical technology at home.

Living with an adult family member using advanced medical technology at home An increased number of chronically ill adults perform self-care while using different sorts of advanced medical technology at home. This hermeneutical study aimed to gain a deeper understanding of the meaning of living with an adult family member using advanced medical technology at home. Eleven next of kin to adults performing self-care at home, either using long-term oxygen from a cylinder or ventilator, or performing peritoneal or haemodialysis, were interviewed. The qualitative interviews were analysed using a Gadamerian methodology. The main interpretation explained the meaning as rhythmical patterns of connectedness versus separation, and of sorrow versus reconciliation. Dependence on others was shown in the need for support from healthcare professionals and significant others. In conclusion, next of kin took considerable responsibility for dependent-care. All next of kin were positive to the idea of bringing the technology home, even though their own needs receded into the background, while focusing on the best for the patient. The results were discussed in relation to dependent-care and transition, which may have an influence on the self-care of next of kin and patients. The study revealed a need for further nursing attention to next of kin in this context.

The study circle as a tool in multiple sclerosis patient education in Sweden

Objective Patient education plays an important role in the management of chronic diseases that can cause disability and predictable psychosocial problems. Quality of life assessment in multiple sclerosis (MS) has confirmed that psychosocial complications related to working life, marriage/partnership, and the family often occur. Furthermore, symptoms such as fatigue, pain, and sexual dysfunction have a great impact. We wanted to develop and implement study circles to promote the patients’ abilities to meet such common problems and to provide a network where they can be autonomous and develop appropriate strategies in self-care and existential problems. Methods Together with the MS patient organization and a study association, we have arranged study circles for patients with MS, thus providing structured information according to a pedagogic model. The patients are encouraged to work together in groups to learn about the disease and its key symptoms, to develop strategies to master these symptoms in everyday life, and to make necessary changes, ie, self-care management. The programme also contains handicap policies. Results Fifteen study circles with a total of 105 patients started during the first year. Fifteen circle leaders were approved. A focus interview showed that the patients are highly satisfied but also revealed some problems in interactions with health care professionals. The study circles were included in a wider project from a newly started multidisciplinary centre for health education for a variety of chronic diseases causing disability, which aims at becoming a regional interface between the health care system, patient organizations, and educational services. Conclusion The study circles have an important role to play in the management of MS. Good organization is required to make such a project work since health care services do not normally work so closely with patient organizations and educational services. Practice implications Study circles that are permanently established and function well are of great help for the patients and the work at the MS clinic is substantially facilitated. Health care professionals also gain from the arrangement by learning more about the self-perceived impact of the disease.

Suffering and suffering with the other – the perspective of perioperative nurse leaders

rudolfsson g. & flensner g. (2012) Journal of Nursing Management20, 278–286 Suffering and suffering with the other – the perspective of perioperative nurse leaders Aim  To capture and interpret meanings of suffering from the perspective of perioperative nurse leaders. Background  There are few studies focusing on suffering and the meaning of being a nurse leader in a perioperative context. Method  Hermeneutic interpretation of interviews with nurse leaders. Results  A main theme of suffering emerged as learning and non-learning. Suffering as learning comprised ‘struggling to come to terms with being misunderstood’, ‘struggling to wait patiently to be allowed to help’, ‘struggling to manage daily tasks’ and ‘struggling to be worthy of the trust of superiors’. Suffering as non-learning comprised ‘feeling alone when in charge’, ‘feeling guilty about not managing daily tasks’, ‘feeling mistrusted by superiors’, ‘feeling unfairly criticized’, ‘feeling humiliated owing to loss of responsibilities’ and ‘feeling unable to help’. Conclusion  Suffering is good when the mission of caring is mastered and the nurse leader feels recognized as unique and trustable, leading to his or her sense of dignity being preserved. Suffering is evil when the mission of caring is threatened, when questioned and not considered a unique and trustable person, leading to loss of dignity. Implications for nursing management  Nurse leaders’ suffering needs to be acknowledged and a caring culture that permeates the entire organization should be developed.

Cerebellar ataxia and intrathecal baclofen therapy: Focus on patients experiences

Elucidating patients´ experiences of living with chronic progressive hereditary ataxia and the symptomatic treatment with intrathecal baclofen (ITB) is the objective of the current study. A multicenter qualitative study with four patients included due to the rare combination of hereditary ataxia and ITB therapy was designed to elucidate participants’ experiences through semi-structured interviews. The transcribed text was analyzed according to content analysis guidelines. Overall we identified living in the present/ taking one day at a time as the main theme covering the following categories: 1) Uncertainty about the future as a consequence of living with a hereditary disease; The disease; 2) Impact on life as a whole, 3) Influence on personal life in terms of feeling forced to terminate employment, 4) Limiting daily activities, and 5) ITB therapy, advantages, and disadvantages. Uncertainty about the future was the category that affected participants’ personal life, employment, and daily activities. The participants’ experience of receiving ITB therapy was expressed in terms of improved quality of life due to better body position and movement as well as better sleep and pain relief.

Being parents with epilepsy: thoughts on its consequences and difficulties affecting their children

Objective Parents with epilepsy can be concerned about the consequences of epilepsy affecting their children. The aim of this paper is to describe aspects of what it means being a parent having epilepsy, focusing the parents’ perspectives and their thoughts on having children. Methods Fourteen adults aged 18–35 years with epilepsy and subjective memory decline took part in focus-group interviews. The interviews were conducted according to a semi-structured guideline. Material containing aspects of parenthood was extracted from the original interviews and a secondary analysis was done according to a content-analysis guideline. Interviews with two parents for the Swedish book Leva med epilepsi [To live with epilepsy] by AM Landtblom (Stockholm: Bilda ide; 2009) were analyzed according to the same method. Results Four themes emerged: (1) a persistent feeling of insecurity, since a seizure can occur at any time and the child could be hurt; (2) a feeling of inadequacy – of not being able to take full responsibility for one’s child; (3) acknowledgment that one’s children are forced to take more responsibility than other children do; and (4) a feeling of guilt – of not being able to fulfill one’s expectations of being the parent one would like to be. Conclusion The parents with epilepsy are deeply concerned about how epilepsy affects the lives of their children. These parents are always aware that a seizure may occur and reflect on how this can affect their child. They try to foresee possible dangerous situations and prevent them. These parents were sad that they could not always take full responsibility for their child and could not live up to their own expectations of parenthood. Supportive programs may be of importance since fear for the safety of the child increases the psychosocial burden of epilepsy. There were also a few parents who did not acknowledge the safety issue of their child – the authors believe that it is important to identify these parents and provide extra information and support to them.