Gabriele Biguet

Attitudes toward physical activity among people with rheumatoid arthritis

Physical activity confers health benefits in the general population, and this also seems to apply to people with rheumatoid arthritis (RA). Less explicit barriers than pain need to be explored and overcome to initiate and successfully maintain physical activity in individuals with RA. The present aim was to describe variations in attitudes to physical activity in a group of people with RA. Sixteen people with RA were chosen to represent various ages, genders, disease duration, functioning, and health habits. Semi-structured, in-depth interviews were carried out, transcribed, qualitatively analysed, and categorised on the basis of similarities and differences. The analysis indicated that attitudes toward physical activity could not be understood without inclusion of attitudes toward the disease and sometimes to life in general. Two dimensions of attitude, motivation and satisfaction, were identified. Four categories were revealed: motivated and satisfied, unmotivated and satisfied, motivated and dissatisfied, and unmotivated and dissatisfied, each representing different attitudes to physical activity. Our findings stress the importance of developing different educational interventions that address attitudes to physical activity in order to implement a healthy life style in individuals with RA.

Views on Exercise Maintenance: Variations Among Patients With Rheumatoid Arthritis

Background and Purpose: Individuals with rheumatoid arthritis (RA) often have to make changes in exercise behavior in order to gain and sustain health benefits. The purpose of this study was to explore and describe ways of understanding exercise maintenance among individuals with RA who had already started to exercise. Participants: Fourteen women and 4 men with RA of at least 2 years’ duration, selected from 4 hospitals or primary health care physical therapy clinics, participated. They had exercised regularly at least twice weekly during the previous 2 months with various levels of support from a physical therapist, and they had attempted to exercise without support outside of the health care environment during the previous year. Method: A phenomenographic approach was used to analyze semistructured interviews. A pattern of categories of descriptions was constructed based on the participants’ conceptions and ways of understanding the phenomenon of exercise maintenance. Results: Five categories were identified: “external control,” “sticks and carrots,” “a joint venture,” “the easy way,” and “on ones own terms.” The categories became clear by elucidating 2 aspects related to exercise maintenance: (1) the way the participants talked about and experienced the type of support needed and (2) personal factors. Discussion and Conclusion: The results highlight the importance of finding the proper context and support for each patients needs. Furthermore, preparing for exercise maintenance by strengthening the patients beliefs in his or her ability to exercise in different settings, by discussing pros and cons of exercise, and by exploiting the patients ability to adapt and continue exercise outside of the health care environment might be valuable.

Physical activity in patients with venous leg ulcer – between engagement and avoidance. A patient perspective

Objective: To identify and describe the qualitative variations in how physical activity is perceived and understood by individuals with current or previous venous leg ulcer. Design: A qualitative study using semi-structured interviews. Method: Twenty-two individuals aged 60–85 years were interviewed. The interviews were recorded, transcribed verbatim and analysed by three researchers using a phenomenographic research approach. A set of categories of descriptions and their internal relationships were constructed based on the essential features of the variation in patients’ perceptions of physical activity. Results: Four categories of descriptions were identified: (i) ‘self-management’, (ii) ‘instructions and support’, (iii) ‘fear of injury’ and (iv) ‘a wish to stay normal’. The categories could be interpreted by a two-dimensional construct: (1) perception of venous leg ulcer as a chronic or acute condition and (2) engagement or avoidance behaviour toward physical activity. Chronicity and behaviour combined together formed a 2 × 2 square housing the four qualitatively different categories. Irrespective of category, the participants reported that information given by caregivers regarding leg ulcer and physical activity was insufficient or contradictory. Written information or exercise programmes were not obtained regularly and not at all in primary care. Conclusion: A dichotomous view emerged from participants’ experiences of physical activity based on (1) perception of venous leg ulcer as a chronic or acute condition and (2) engagement or avoidance behaviour toward physical activity.

Understanding how to determine the intensity of physical activity–An interview study among individuals with rheumatoid arthritis

Purpose. The study sought to describe variation in understandings of how to determine the intensity of physical activity among individuals with rheumatoid arthritis (RA). Method. Nineteen individuals aged 21–82 years with RA participated in semi-structured interviews, which were recorded, transcribed verbatim and analysed using a phenomenographic approach. Results. Four qualitatively different ways of understanding how to determine the intensity of physical activity were identified: a) focus on alterations of bodily features; b) focus on will-power and awareness; c) focus on type and performance of activity; and d) focus on consequences of the disease. Conclusions. The results suggest that there might be a discrepancy between health professionals and patients with RA regarding the understanding of physical activity intensity. This highlights the importance for health professionals to recognise what individuals focus most attention on when communicating ‘intensity’. If necessary, health professionals should endeavour to reach a common understanding of evidence-based ways of determining physical activity intensity with each patient in order to prescribe accurately, and assess, physical activity.

Experiences of decreased lung function in people with cervical spinal cord injury

Purpose. The present aim was to explore and describe experience of decreased lung function among people with cervical spinal-cord injury (CSCI). Method. Thirty-three people with CSCI with a lesion between levels C4 and C8 entered the study. Qualitative content analysis was used. A semi-structured interview guide was constructed with the main focus on experience of symptoms related to decreased lung function. Results.  The experience related to decreased lung function was limitations in breathing function, the ability to cough and voice function. Individual self-management strategies were described in relation to these limitations. The overarching theme throughout the interviews was that although the limitations were in most cases significant compared to the situation before injury, they were not necessarily experienced or referred to as a problem. Conclusions. Breathing function, the ability to cough and voice function were perceived as limited in most of the present participants with CSCI compared to before the injury. Most had adapted to the situation and had developed their own strategies for handling the limitations. However, these limitations did not only become normal for the individuals because of compensatory strategies, these limitations were usually experienced as a problem not to speak of.

Adolescents' perceptions of obesity treatment – an interview study

Purpose. To describe adolescents’ perceptions of obesity treatment in order to provide valuable information for design and development of treatment. Method. A nominated sample of 18 obese adolescents (12 girls, 14–16 years, body mass index (BMI) 25–47.4 kg·m−2), recruited from a paediatric obesity clinic, participated in semi-structured interviews. These were analysed using a phenomenographic research approach. Purposeful sampling reflected variations in age, gender, degree of obesity, weight loss achievement, ethnicity, time of registration and socioeconomic status. Results. The adolescents expressed numerous physical, psychological and social disabilities as a consequence of their obesity. Qualitatively different ways of perceiving and responding to obesity treatment were identified and could be described in six categories of descriptions and a two-dimensional construct for interpreting these categories; (a) personal empowerment, (b) despair and disappointment, (c) safety and relief, (d) ambivalence and uncertainty, (e) acceptance and realisation and (f) shame and guilt. The distinguishing structures to be found between the categories were as follows: focus on the individual and focus on body weight. Conclusions. Treatment strategies must consider the large impact obesity has on adolescents’ lives. It is necessary to engage the obese adolescent personally in the treatment process and to focus on the adolescents’ personal needs, goals and motive for weight reduction.

Perceptions of lymphoedema treatment in patients with breast cancer - a patient perspective

Lymphoedema after breast cancer surgery is a chronic condition. Lymphoedema treatment consists of information/advice, compression, physical exercise, skin care, and manual lymph drainage. Little is known about how patients experience, adapt, and respond to lymphoedema treatment. Thus, the purpose of the study was to investigate and describe womens perceptions of lymphoedema treatment after breast cancer surgery. Sixteen women with breast-cancer-related lymphoedema, recruited from four hospitals and two rehabilitation clinics, participated in the study. Semi-structured interviews were conducted and analysed using a phenomenographic method. Five qualitatively different categories of description could be identified: uncertainty, disappointment, guilt and shame, safety, and autonomy. The categories could be described based on a two-dimensional structure: the patients role (internal vs. external locus of control) and an understanding of lymphoedema as a chronic disease or a burden. The study has provided a deeper understanding of different ways in which patients perceive and respond to lymphoedema treatment. The present findings enable the lymphoedema therapist to individualise treatment and counselling based on each patients approach to the patient role, ability to take responsibility for treatment, and acceptance of lymphoedema as a chronic disease.

Meanings of “acceptance” for patients with long-term pain when starting rehabilitation

Abstract Purpose: The study aimed to elucidate the meaning of acceptance in relation to the lived body and sense of self when entering a pain rehabilitation programme. Methods: Six women and three men with long-term pain were interviewed. The interviews were analysed according to interpretative phenomenological analysis. Results: The analysis revealed three different meaning structures, first: acceptance as a process of personal empowerment, “the only way forward”. Here, the individuals expressed that the body felt integrated: a trusting cooperation between self and body gave rise to hope. Second: acceptance as an equivocal project, a possible but challenging way forward. The hopeful insight was there, acknowledging that acceptance was the way to move forward, but there was also uncertainty and doubt about one’s ability with a body ambiguous and confusing, difficult but important to understand. Third, in acceptance as a threat and a personal failure, “no way forward” the integration of the aching body in sense of self was impossible and pain was incomprehensible, unacceptable and unfair. Pain was the cause of feeling stuck in the body, affecting the sense of self and the person’s entire life. Conclusions: The meaning of acceptance was related to acceptance of the persistency of pain, to how the individual related to the lived body and the need for changes in core aspects of self, and to the issue of whether to include others in the struggle of learning to move on with a meaningful life. Implications for Rehabilitation Healthcare professionals should be aware that individuals with long-term pain conceptualize and hold different meanings of acceptance when starting rehabilitation; this should be considered and addressed in rehabilitation programmes. The meaning given to acceptance is related to the experience of the lived body and the sense of self, as well as to getting legitimization/acceptance by others; therefore these aspects need to be considered during rehabilitation. The process of achieving acceptance seems to embrace different processes which can be understood as, and facilitated by, an embodied learning process. The bodily existential challenges presented in the present study, for example to develop an integrated and cooperative relationship with the painful body, can inspire health professionals to develop interventions and communication strategies focusing on the lived body. A wide range of competencies in rehabilitation clinics seems to be needed.

‘Instead of popping pills, perhaps you should add frog breathing’: experiences of glossopharyngeal insufflation/breathing for people with cervical spinal cord injury

Abstract Background: People with cervical spinal cord injury have impaired function of the respiratory muscles, which results in reduced ventilation. Glossopharyngeal insufflation/breathing increases total lung capacity and improves cough function, however, knowledge of the experiences regarding learning and practicing glossopharyngeal insufflation in everyday life is missing. Purpose: To describe and explore the experiences of learning and practicing glossopharyngeal insufflation among people with cervical spinal cord injury. Methods: Twenty six individuals with cervical spinal cord injury, who had participated in a previous intervention study on glossopharyngeal insufflation, were interviewed. Semi-structured telephone interviews were analyzed with qualitative content analysis. Results: An overall theme and seven categories emerged. Glossopharyngeal insufflation was perceived as a possibility to make a difference in one’s life by improving respiratory function, both immediately and for time ahead and thereby ease everyday activities, and by increasing participation, independence, and overall health. The participants with cervical spinal cord injury described that they could learn glossopharyngeal insufflation, but it could be perceived as difficult. However, the use of glossopharyngeal insufflation could be experienced by the individual as being different, and there were sometimes doubts about its effectiveness. Conclusions: Use of glossopharyngeal insufflation can enable people with cervical spinal cord injury to increasingly participate in everyday activities. Increased autonomy might lead to improved self-esteem and provide well-being. However, ambivalence about the usefulness of glossopharyngeal insufflation may arise and the technique can be difficult to learn. Therefore, individualized information and instructions from health professionals are required. Implications for Rehabilitation Practicing glossopharyngeal insufflation leads to increased participation in everyday activities for people with cervical spinal cord injuries and provides the individual hope to influence future life situation. People with cervical spinal cord injuries therefore need support from health care professionals in order to be motivated to learn and then use the glossopharyngeal insufflation technique also as health promotion Glossopharyngeal insufflation can improve respiratory function and also increase awareness of breathing; health professionals should therefore be able to assess which patients who can benefit from glossopharyngeal insufflation in order to make the technique become an important part of the rehabilitation. The technique can be difficult to perform perfectly and is sometimes perceived as uncomfortable. It may also cause unpleasant side effects and therefore individualized information and instructions regarding glossopharyngeal insufflation are required.

Experience of using non-invasive ventilation as an adjunct to airway clearance techniques in adults with cystic fibrosis–A qualitative study

ABSTRACT Background: Adults with cystic fibrosis (CF) suffer from abnormally thick mucus that is difficult to clear from the airways. Different airway clearance techniques (ACTs) can be used to clear secretions and non-invasive ventilation (NIV) can be used as an adjunct to these techniques. ACTs are ideally introduced at the time of diagnosis and thereafter modified throughout the patient’s lifespan and disease progress. Purpose: The research aim was to describe adult patients’ views and experiences with using NIV as an adjunct to ACT. Method: Eighteen adults with CF were interviewed about their experiences with using NIV during ACT. Semi-structured interviews were conducted and analyzed in accordance with qualitative content analysis. Results: The results gave rise to the overall theme ‘Becoming Friends with NIV’ and six associated categories: 1) getting a sense of control and feedback; 2) getting support; 3) dealing with doubt; 4) finding the rhythm; 5) feeling the effects; and 6) finding their own motivation. The findings represent a learning process for adults during the implementation stages of NIV; the physiotherapist was found to play a key role in this process. Conclusion: ‘Becoming Friends with NIV’ involves a learning process for adults with CF. To facilitate this learning process, different aspects should be taken into account so as to promote independence and self-management, which in turn allows the patient to experience the treatment as meaningful. The findings are relevant to physiotherapists working with adults and NIV, as improved insight into and understanding of the relationship may have a positive influence on the outcome and success of NIV usage.