Bente Appel Esbensen

Physical activity maintenance in patients with rheumatoid arthritis: a qualitative study

Objective: To describe the experience of physical activity maintenance in patients with rheumatoid arthritis. Design: A qualitative salutogenic-oriented interview study. Setting: A rheumatology outpatient clinic. Subjects: A purposive sample of 16 physically active patients (mean age 50, range 37–67) diagnosed with rheumatoid arthritis on average 21 years previously (range 4–46 years). Methods: In-depth interviews were conducted using a semi-structured interview guide to illuminate how the phenomenon ‘physical activity maintenance’ was experienced by patients with rheumatoid arthritis. The interviews were analysed using systematic text condensation, inspired by Giorgi’s descriptive phenomenological methodology. Results: The analysis revealed three categories: (1) knowing and enjoying the body; (2) responsibility and challenges; (3) autonomy and social belonging. On the basis of these categories, the essential meaning of the phenomenon of physical activity maintenance for patients with rheumatoid arthritis was summarized into ‘striving for a transparent body and participation’, pointing to experiences of sensations of wellbeing, liberation from restrictions and social participation on equal terms with non-arthritis populations. Conclusion: This study demonstrates that physical activity in patients with rheumatoid arthritis may be understood as a resource to resist disability and to feel and stay healthy while creating and sustaining meaningfulness in life.

Being next of kin to an elderly person with cancer

OBJECTIVES The aim of the study was to illuminate the experience of life as next of kin to an elderly person with cancer. BACKGROUND Being next of kin to an elderly person with cancer and its impact on everyday life has been sparsely researched. Such understanding is needed to support both the sufferers and their relatives in dealing with issues arising after a cancer diagnosis in old age. DESIGN A qualitative study was used to illuminate the experience of next of kin of elderly people with cancer. METHOD In total, 16 (mean age 61, range 42-80) persons were interviewed. Open-ended interviews were used to get closer to their experiences. Manifest and latent content analysis were used. FINDINGS Two main categories, Transformations of roles and Changed frames of mind, were identified, as well as four subcategories. The study showed that the cancer activated perceptions in the next of kin about ageing and growing old. The onset of the disease was a turning point, i.e. the disease highlighted that the patient had become old and the combination of this and the disease reinforced the negative image of old age in general. The next of kin found that the diagnosis of cancer was followed by role changes within the family. It awoke feelings of anger and doubt and made the next of kin stop and think about what is really important in life. CONCLUSION With the onset of a serious illness, all next of kin are greatly affected in many ways but especially by changes in their roles, without, however, being prepared. The phenomenon of time seems to have significant meaning to the next of kin, although it may be perceived differently from the perspective of healthcare professionals than from that of next of kin.

Dependency in elderly people newly diagnosed with cancer – A mixed-method study

PURPOSE This study, based on data from an empirical investigation, combines quantitative and qualitative approaches in a mixed-method design to explore dependency in elderly people newly diagnosed with cancer. METHODS AND SAMPLE 101 elderly people newly diagnosed with cancer were included in the quantitative part, with 16 in the qualitative part. A questionnaire concerning quality of life and dependency issues was developed. For the qualitative part, open-ended interviews were conducted to get closer to the experience of dependency. RESULTS Combining the two methods was seen as complementary. Involvement of the patient in decision-making related to contact with the primary and secondary health-care systems is an important element in reducing the perception of dependency and maintaining the Quality of Life (QoL) of elderly cancer patients. A more precise intervention in this patient population can be achieved by assessing, Activities of Daily Living (ADL) in the elderly. Receiving assistance from children seems to increase perceived dependency and to affect QoL negatively. CONCLUSIONS The results of this mixed-method study indicate that dependency had a negative influence on the elderly with cancer. Being dependent on others was experienced as deterioration. Fatigue represents a significant risk factor for decreased functional ability and is experienced as a reminder of being old and the situation as being out of control. Patients may benefit from health-care professionals acquiring a complete picture of dependency and cancer-related fatigue in the elderly through a systematic assessment, where for example, functional limitations related to fatigue can be determined.

Brief preoperative smoking cessation counselling in relation to breast cancer surgery: A qualitative study

AIM To describe how women smokers with newly diagnosed breast cancer experienced brief preoperative smoking cessation intervention in relation to breast cancer surgery. BACKGROUND Preoperative smoking cessation intervention is relevant for short- and long-term risk reduction in newly diagnosed cancer patients. Our knowledge of how patients with malignant diagnoses experience preoperative smoking intervention is however scarce. METHODS A qualitative descriptive study that collected data through one-time individual, semi-structured interviews with 11 Danish women. Ricoeurs theory of interpretation was used for the analysis. RESULTS The women experienced that brief preoperative smoking intervention triggered reflection upon smoking and health. They furthermore experienced the smoking intervention as an opportune aid to escaping the social stigma of being a smoker. Quitting in the context of cancer diagnosis was difficult for some women. They relapsed to smoking as an ingrown response to emotional distress. The smoking intervention heightened the womens awareness of their addiction to smoking; however, they expressed a need for prolonged smoking cessation support. For others, the smoking intervention was supportive of cessation, and these women experienced smoking cessation as an enactment of a duty of responsibility to themselves and those nearest to them. They furthermore experienced a sense of personal achievement, improved well-being and endorsement from family and friends. CONCLUSION In newly diagnosed breast cancer patients, brief preoperative smoking intervention motivated smoking cessation. However, prolonged intervention, pre- and postoperatively, may more effectively support cessation in breast cancer patients and should therefore be evaluated in this patient population.

Effect of intermittent aerobic exercise on sleep quality and sleep disturbances in patients with rheumatoid arthritis – design of a randomized controlled trial

BackgroundPoor sleep is prevalent in patients with systemic inflammatory disorders, including rheumatoid arthritis, and, in addition to fatigue, pain, depression and inflammation, is associated with an increased risk of co-morbidity and all-cause mortality. Whereas non-pharmacological interventions in patients with rheumatoid arthritis have been shown to reduce pain and fatigue, no randomized controlled trials have examined the effect of non-pharmacological interventions on improvement of sleep in patients with rheumatoid arthritis. The aim of this trial was to evaluate the efficacy of an intermittent aerobic exercise intervention on sleep, assessed both objectively and subjectively in patients with rheumatoid arthritis.Methods/designA randomized controlled trial including 44 patients with rheumatoid arthritis randomly assigned to an exercise training intervention or to a control group. The intervention consists of 18 session intermittent aerobic exercise training on a bicycle ergometer three times a week. Patients are evaluated according to objective changes in sleep as measured by polysomnography (primary outcome). Secondary outcomes include changes in subjective sleep quality and sleep disturbances, fatigue, pain, depressive symptoms, physical function, health-related quality of life and cardiorespiratory fitness.DiscussionThis trial will provide evidence of the effect of intermittent aerobic exercise on the improvement of sleep in patients with rheumatoid arthritis, which is considered important in promotion of health and well-being. As such, the trial meets a currently unmet need for the provision of non-pharmacological treatment initiatives of poor sleep in patients with rheumatoid arthritis.Trial registrationClinicalTrials.gov Identifier: NCT01966835

The efficacy of motivational counseling and SMS-reminders on daily sitting time in patients with rheumatoid arthritis: protocol for a randomized controlled trial

BackgroundPatients with RA (Rheumatoid Arthritis) are more sedentary than the general population. Reduction of Sedentary Behaviour (SB) has been suggested as a mean for improvement of health in patients with chronic diseases and mobility problems. Short-term intervention studies have demonstrated that SB can be reduced by behavioural interventions in healthy populations. However, it remains unexplored whether it is valid for patients with RA also.Therefore, the aim of this trial is to investigate the efficacy of an individually tailored, theory-based motivational counseling intervention on reducing daily sitting time in sedentary patients with RA. Additionally, to explore whether a reduction in daily sitting time is associated with reduced pain and fatigue, self-reported physical function, self-efficacy, improved health-related quality of life (HR-QoL) and cardiovascular biomarker levels, and finally to assess the cost-effectiveness of the intervention.Methods/DesignFor this parallel group randomized trial, 150 patients with RA and at least 5 hours of sitting time per day, will be recruited from a rheumatology outpatient clinic, and block-randomized to the intervention group or the control group receiving usual care. The intervention includes: 1) individual motivational counseling (in total 3 sessions) on reduction of daily sitting time in combination with 2) individual Short Text Message Service (SMS) reminders over a 16-week intervention period. Primary outcome is change in daily sitting time (minutes) from baseline to 16 weeks measured objectively using an ActivPAL® Activity Monitor. Secondary outcomes include fatigue, pain, physical function, HR-QoL, self-efficacy, costs and cost-effectiveness. Furthermore, anthropometric measures will be included as well as measurement of blood pressure and serum lipids. All outcomes are assessed at baseline and repeated after 16 weeks. Follow-up assessments are made at 6 and 18 months post-intervention.DiscussionThe intervention is simple, non-invasive and may be implemented at low costs. If the study confirms the positive results expected, the intervention might be implemented in clinical practice and potentially transferred to other clinical populations.Trial registrationClinicalTrial.gov registration number: NCT01969604. Date of registration: 17 October 2013.

Men's experiences of living with ankylosing spondylitis: a qualitative study.

Background. The majority of patients with ankylosing spondylitis (AS) are male, although potential gender differences have not been investigated in relation to disease management. Moreover, men’s perceptions of experiencing AS have not been reported in the literature. Aims. This study sought to develop an understanding of how men experience AS and the challenges related to living with AS as a chronic disease. Methods. A purposive sample of 13 men diagnosed with AS, with a median age of 44 years (range 32–58) was recruited from a rheumatology outpatient clinic. The median duration of disease was 12 years (range 0.3–28 years), and the median time from the first symptom to final diagnosis was seven years (range 2–20 years). Semi-structured interviews were conducted using an interview guide, and the interviews were analysed using content analysis inspired by Graneheim qualitative methodology. Results. The analysis revealed four categories: (1) ‘Approaching a diagnosis’; (2) ‘Ill in a social context’; (3) ‘Challenged as a man’; and (4) ‘The importance of remaining physically well’. Based on these categories, the overall category of ‘An invisible companion for life’ emerged, which captures the experience of living with an invisible, life-long disease. Conclusions. These findings demonstrate that AS impacts men’s perceptions of themselves as men, relationships as a partner and father, social lives, and masculine identity. Physical activity was highlighted as an important part of being a man, and not being able to exercise challenged the men’s masculine identity. Copyright

Sedentary behaviour in patients with rheumatoid arthritis: A qualitative study

Background Despite increasing interest in investigating sedentary behaviour (SB) in the general population and in patients with rheumatoid arthritis (RA), there is little documentation of the subjective experiences of SB in patients with RA. This study aimed to examine how patients with RA describe their daily SB. Methods Fifteen patients with RA (10 women and 5 men) from 23 to 73 years of age and with a disease duration ranging from 4 to 27 years were interviewed following a semi-structured interview guide. Data were analysed using the content analysis method described by Graneheim. Results SB appeared in three categories covering: 1) A constant battle between good and bad days; SB could be a consequence of RA in terms of days with pronounced pain and fatigue resulting in many hours of SB. 2) Adaptation to everyday life; living with the unpredictability of RA included constant modification of physical activity level causing increase in SB, especially during periods of disease flare. Prioritizing and planning of SB also functioned as part of self-management strategies. 3) It has nothing to do with my arthritis; for some patients, SB was not related to RA, but simply reflected a way of living independent of the disease. Conclusions SB is perceived, motivated, and performed differently in patients with RA. An individually tailored approach may be essential in understanding and encouraging patients’ motivation towards sustainable change in SB and activity patterns.

Fathers’ experience of childbirth when non-progressive labour occurs and augmentation is established. A qualitative study

OBJECTIVE Augmentation with oxytocin during labour has increased in Western obstetrics over the last few decades. The aim of this study was to describe how fathers experienced childbirth when non-progressive labour occurred and augmentation was established. METHOD A qualitative descriptive design. Ten fathers were interviewed 4-15 weeks post partum. The interviews were semi-structured and were analyzed using Braun and Clarkes thematic analysis. RESULTS The analysis revealed three themes and four sub-themes. The themes were: (1) A rational approach to own role, (2) Labour and birth as uncontrollable processes and (3) Relief about the decision of augmentation. The fathers had a rational approach and felt powerless when the process of labour was uncontrollable. They felt they were not able to help their partners in pain when non-progressive labour occurred. They experienced relief when augmentation was established because of the subsequent progression of labour, and because it was then easier to find a role as a helper. CONCLUSION This study demonstrates that fathers feel relieved when augumentation is established. In addition, the study underlines that fathers, in order to regain control after experiencing the non-progressive labour, need directions from the midwives to carry out appropriate and usefull tasks.

Call for human contact and support: an interview study exploring patients’ experiences with inpatient stroke rehabilitation and their perception of nurses’ and nurse assistants’ roles and functions

Abstract Purpose: To describe patients’ experiences with inpatient stroke rehabilitation and their perception of nurses’ and nurse assistants’ roles and functions during hospitalisation. Materials and methods: In a qualitative study, 10 interviews with stroke patients were conducted, transcribed, and analysed using qualitative content analysis. Results: The patients’ experiences with inpatient stroke rehabilitation and their perception of nurses’ and nurse assistants’ roles and functions during hospitalisation were found to be related to one overall theme derived from 10 categories. As a recurring motif in the patients’ interviews, they experienced existential thoughts, and these thoughts unquestionably affected their experiences within the rehabilitation unit. These thoughts enhanced their need for human contact, thereby affecting their relationships with and perceptions of the nursing staff. Conclusion: The findings deepen our understanding of how patients experience inpatient rehabilitation. The patients struggled with existential thoughts and concerns about the future and therefore called for human contact and support from the nursing staff. They perceived the nursing staff as mostly polite and helpful, but were unclear about the nursing staff’s function in rehabilitation which, in the patients’ perspective, equals physical training. Implications for Rehabilitation Nursing staff need to pay attention to the patients’ needs, existential thoughts and concerns during inpatient rehabilitation. Meaningful goals for the rehabilitation of stroke patients are crucial, and it is vital that the patients commit to the goals. Patients expected polite and helpful nurses, but did not see them as therapeutic and active stakeholders, thus it is important that nursing staff present themselves as part of the interdisciplinary rehabilitation. There is a need for training and education of nursing staff, both pre and post graduate.