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

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.

     

Embodied-enactive clinical reasoning in physical therapy

Abstract

Clinical reasoning is essential in physical therapy practice. Instrumental approaches and more recent narrative approaches to clinical reasoning guide physical therapists in their understanding of the patient’s movement disturbances and help them to plan strategies to improve function. To the extent that instrumental and/or narrative models of clinical reasoning represent impairments as mere physical disturbances, we argue that such models remain incomplete. We draw on a phenomenologically inspired approach to embodied cognition (termed “enactivism”) to suggest that the dynamics of lived bodily engagement between physical therapist and patient contribute to and help to constitute the clinical reasoning process. This article outlines the phenomenologically informed enactive perspective on clinical reasoning, with special reference to clinical work that addresses impairments as sequelae of neurological diseases.     

Morphing the body: illusory feeling of an elongated arm affects somatosensory homunculus

Recent studies suggest that in contrast to traditional views of the body map the topographic representation in primary somatosensory cortex (SI) reflects the perceived rather than the physical aspects of peripheral stimulation. Here, we created a simple illusion of feeling an elongated arm by using the dominance of the visual domain over the tactile sense: employing an artificial hand and arm, which were connected to the body, subjects were given the visual impression that they had an extended arm. Since it is known from animal studies that tactile illusions alter early sensory processing in SI, we expected a modulation of the topography in SI corresponding to this illusion. Behavioral results showed that during the illusion the participants felt that their arm was elongated. Neuromagnetic source imaging of the functional organization in SI revealed that the cortical distance between first (D1) and fifth digit (D5) decreased when subjects felt the arm elongated. Since this modulation was significantly positively correlated with the illusionary feeling of an extended arm, the results suggest an involvement of SI during perceived changes in the size of body parts. We discuss the results as possible top-down modulations of SI by higher order somatosensory areas.     

The lived experience of the diabetes nurse specialist regular check-ups, as narrated by patients with type 2 diabetes

Aim. The aim was to elucidate the lived experience of regular diabetes nurse specialist check‐ups among patients with type 2 diabetes. Background. Diabetes care with diabetes nurse‐led clinics in primary care has been established in Sweden since the 1980s. Information about patients’ lived experience of these regular check‐ups is important in the further development of diabetes nursing in primary care. Methods. Narrative interviews were conducted with 10 women and 10 men with type 2 diabetes regarding their lived experience in everyday life and the regular check‐ups by the diabetes nurse specialist. A phenomenological‐hermeneutic method inspired by Ricoeur was used in the analysis. Results. Patients’– with type 2 diabetes – lived experience of regular check‐ups showed an overall positive influence on the patients’ way of living with the disease by underpinning and developing their understanding and management of daily life. This influence was interpreted as an interlinked chain comprising the following elements; being confirmed, being guided within the disease process, becoming confident and independent and being relieved. Every link contained a positive influence from being dependent‐independent, autonomous and a feeling of freedom in patients striving for an everyday life with a disease under control. Relevance to clinical practice. The development of diabetes‐nurse‐led clinics from the perspective of the patient must consider the patient's individual need for support and continuity with the diabetes nurse specialist. Consultations with collaborative partnership and specific expertise that is easy to access implied autonomous disease self‐management in terms of patients’ own control of the disease over time. In view of the increasing number of patients with diabetes, this could positively impact the availability of diabetes nursing care.     

The meaning of a consultation with the diabetes nurse specialist

Scand J Caring Sci; 2010; 24; 341–348
The meaning of a consultation with the diabetes nurse specialist Objective: The aim of this study was to elucidate the essential meaning of a consultation between diabetes nurse specialists and patients to gain a deeper understanding of the patients’ experiences. Methods: Twenty patients with type 2 diabetes were interviewed about their experience of a consultation at an annual check‐up with the diabetes nurse specialist. A phenomenological hermeneutic method was used in the analysis and interpretation of the text. Results: The patient’s experience of a consultation was interpreted as manifestation of hold on the disease control. This means a safeguard to continue daily life shown in the four themes being controlled, feeling exposed, feeling comfortable, and feeling prepared. Conclusion: The patients’ experiences of a consultation with the diabetes nurse specialist became the basis for a health maintenance process in dealing with critical health–disease aspects. Implications to practice: In a consultation, professionals have to take into account the potential emotional turbulence that disease progression can mean to a patient. Diabetes care implies patient dependence on support to avoid a potential self‐management insufficiency and call attention to professionals’ time for listening to patients’ perceptions.     

The meaning of women's experience of living with long-term urinary incontinence is powerlessness

Aim. The aim was to illuminate the meaning of women's experiences of living with urinary incontinence (UI). Background. Living with long‐term UI means a variety of consequences for everyday life. Women's narratives about their lived experiences are important in enabling nurses to better understand and to help women achieve symptom control. No previous study could be found that has focused on the meaning of women's experience of living with UI from a symptom management perspective. Method. Fourteen women with UI (range: 34–52 years) who had sought professional help were interviewed. A phenomenological hermeneutic method was used to analyse and interpret the interview texts. Findings. The women's experiences of living with UI are presented in terms of two interlaced themes of being in a vulnerable situation and striving for adjustment. Being in a vulnerable situation means that the women had no control over UI and experienced powerlessness. The sub‐themes in this case were living with an uncontrolled body, living with incontinence as taboo and experiencing a less satisfying encounter. Striving for adjustment means that the women tried to handle their incontinence in different ways to regain power and continue to live as normal. The sub‐themes here were living in readiness, making urine leakage comprehensible, accepting living with UI and being familiar with the situation. Conclusion. The meaning of women's experience of living with UI is powerlessness. Relevance to clinical practice. Nurses should supervise women in pelvic floor muscle training to achieve control over incontinence, thereby helping them regain power. Additionally, Integrated Approach to Symptom Management can help nurses enhance women's self‐care abilities.     

“How to conquer a mountain with multiple sclerosis”. How a climbing expedition to Machu Picchu affects the way people with multiple sclerosis experience their body and identity: a phenomenological analysis

Abstract

Background: People with multiple sclerosis (MS) frequently complain of chronic or fluctuating fatigue, sometimes accompanied by pain. From a phenomenological point of view, both fatigue and pain are seen as aspects of suffering which adversely affect the physical, psychological, social and even existential dimensions of the individual life. Objective: The present study discusses changes in identity and body awareness in people with MS who completed a 5-d trekking to Machu Picchu in Peru in 2012, after having completed a physical training schedule for several months. Method and design: All nine participants took part in a focus group organized after the trip. The Interpretative Phenomenological Analysis (IPA) was used to gain insight in their experiences and to refine pre-existing theoretical understanding of body awareness and identity. Results: Our phenomenological analysis clarified how aspects of the participants’ identity and body experience before, during and after the journey influenced major daily themes as “body”, “lived body”, “behaviour” and “relationship” and how this contributed to a meaningful experience. When participants describe how they started looking at their own identity more consciously after being watched through the others’ eyes, this resulted in a joyful transcending of their bodily power and endurance. In general, our data suggest that the more extreme, positive lived body experiences during the expedition were necessary for optimizing daily “routine” functioning. Conclusion: Participating in Machu Picchu expedition appeared to have a deep and profound effect on body awareness and identity. Participants experienced their body once again as theirs, owning it and above all, allowing it to be a source of strength, joy and meaningfulness. While MS determined their lives prior to the journey, they now could look at MS as a part of what they are, without totally being absorbed in it. So being a patient with MS before, resulted in merely having MS after the climb.

• Implications for Rehabilitation

• Patients experience illness as a disruption of their previous life. A phenomenological approach deals with the lived experience and the concept of body awareness, the meaningful experience of living in the world through the body. This approach complements biomedical viewpoints as providing different.

• Suffering from a chronic and unpredictable disease like multiple sclerosis (MS) can disturb the implicit and harmonious relation between the body, the mind and the world, already at an early stage.

• Factors including physical training, professional guidance, social support, becoming a role model and completing a unique expedition outside of national and natural comfort borders may contribute to changes in body and identity experience.

     

Quality of life, postnatal depression and baby gender

Aims and objective. To study the impact of postnatal depression on the quality of life of young French mothers and to evaluate if the gender of their child influences this. Background. Postnatal depression (PND) constitutes a major public health problem considering its high prevalence and consequences upon quality of life and parental skills. Design. This research is a cross‐sectional study during the postnatal period. Methods. This study was carried out during a two‐month period. Data were collected by interview and questionnaires. The authors compared the prevalence rate of PND and life quality in a cohort of 181 women and measured the short‐term impact of the child's birth. Results. Postnatal depression strongly negatively influences all dimensions of life quality explored through the SF36, e.g. physical functioning (PF), physical Role (RP), bodily pain (BP), mental health (MH), emotional role (RE), social functioning (SF), vitality (VT), general health (GH), standardized physical component (PCS) and standardized mental component (MCS). The baby's gender (having a boy) also significantly reduces quality of life, irrespective of depressive state. There is a relationship between baby gender and PND. Conclusion. This research is the first to show that the birth of a boy reduces several dimensions of the mothers’ quality of life. Relevance to clinical practice. The importance of the impairment of quality of life in case of PND, as well as its effects on mother‐child interaction, could justify prevention programs and early psychotherapeutic care. Further research needs to explore the effectiveness of programmes targeting the construction of parenting skills as a preventative measure against PND, especially for parents of boys.     

It's like being in another world--patients' lived experience of magnetic resonance imaging

Aim. The aim of this study was to illuminate patients’ lived experience during magnetic resonance imaging. Background. Magnetic resonance imaging has increased in importance since the early 1980s and is today a common useful diagnostic tool. Although magnetic resonance imaging are non‐invasive and considered painless, many patients experience anxiety, sometimes so strong that the scan has to be terminated. Design and methods. The study had an inductive design and a hermeneutic phenomenological methodology was used. Results. The essential theme of going through magnetic resonance imaging was a feeling of being in another world. The strange environment and isolation inside the scanner made the participants’ experiences unusual, with varying degrees of difficulty dealing with it. Being in the other world caused a threat to the participants’ self‐control. There was a relation between threat to self‐control, effort and need for support in the sense that the magnitude of threat to self‐control had an impact on the effort it took to handle the situation and on the need for support, and conversely that the support received could affect the effort and threat to self‐control. Conclusions. The study shows that the information received and the interaction between patients and staff have a significant influence on patients’ lived experiences. Relevance to clinical practice. The individual experience of threat to self‐control requires the need for support to be individualized and care need to be adjusted for each patient.     

Journey towards recovery following physical trauma

Journey towards recovery following physical trauma Convalescence and recovery following illness are of central importance to nursing. These themes have been explored increasingly in the literature. The focus, however, has been primarily on the process of integrating chronic illness into one’s life. Recovery from physical injury is rarely addressed. A body of work focusing on physical trauma demonstrates that recovery is often not complete after injuries that have not been viewed as disabling. To illuminate understanding of recovery following physical trauma, the purpose of our 1997 study was to describe more thoroughly the nature of recovery. A total of 63 adults, in a convenience sample, who survived serious physical trauma, were interviewed 2·5 years after injury using an open‐ended semistructured interview guide. Three themes were identified: event, fallout, and moving‐on. These themes provided the organizing structure for exploring the journey to recovery. This journey, as disclosed by the seriously injured, does not necessarily correspond with the views of most trauma clinicians. Traumatic events create a line of demarcation, separating lives into before and after. The event becomes the starting point of a journey to resume one’s life. The event itself is more than the trauma; it is the perceptual and contextual experience that needs to be incorporated into a person’s essence. Fallout from the injury is multifaceted and includes physical, psychological, social, and spiritual dimensions. Moving‐on in this journey is nonlinear as survivors recognize their lives are forever different. The survivors’ accounts suggest that nurses should carefully consider the question, ‘What is successful recovery?’     

Being in a lived retreat--embodied meaning of alleviated suffering

Meanings of alleviated suffering in persons living with life-threatening cancer are explored in this life-world phenomenologic study. In repeated conversations, 16 patients with cancer who were receiving palliative care shared their embodied experiences in personal narratives. When interpreting the narratives, the following meanings of experiencing alleviation of suffering were disclosed: an endurable body being independent and feeling at home, feelings of connectedness, taking a long view of the suffering, being lifted out of the suffering, and an inner peace. Movements that were found in alleviation were dampening the suffering, arousing a zest for life, and focusing on both the present and the patient's dignity. As an interpreted whole, alleviation of suffering was found to be an embodied experience of "being in a lived retreat." This is a symbolic place owned by the person and is experienced in either the company of others or solitude. This lived retreat can provide a feeling of being at home, creating peace, rest, confidence, and breathing space in the person's suffering. It means coping with the altered lived body and feeling dignified. This is a personal experience that is both intersubjectively created and dependent. The importance of openness and responsibility in palliative care is emphasized in the findings and the notion of control of suffering in palliative care is accordingly rejected.     

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

kneck ?., klang b. & fagerberg i. (2012)?Learning to live with diabetes - integrating an illness or objectifying a disease. Journal of Advanced Nursing68(11), 2486-2495. ABSTRACT: 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.     

Demanding treatment processes in Norwegian psychomotor physiotherapy: From the physiotherapists’ perspectives

Long-lasting musculoskeletal pain may be understood as the embodiment of bio-psycho-social strain. A combined theoretical perspective of biomedicine, physiotherapy and phenomenology may make these painproblems more comprehensible for the therapist. Norwegian psychomotor physiotherapy is one treatment approach applied on patients with long-lasting musculoskeletal pain. The approach is process-oriented, and can be long-term, complex and demanding. To explore this issue, we employed a multi-stage focus-group phenomenological methodology including five experienced physiotherapists. We found that during these demanding situations, the physiotherapists described their experiences including the feeling of being stuck, and further, how the experience of being in touch with their own body opened possibilities to bear, and act in the demanding situations. The physiotherapists had to find a balance between being in touch with themselves and concurrently listen to and be in contact with their patients.     

Understanding persons with psychological distress in primary health care

The purpose of this study was to gain more knowledge and a deeper understanding of experiences of persons living with psychological distress who seek help in primary care. Psychological distress is a state of emotional suffering associated with stressors and demands that are difficult to cope with in daily life. The lack of effective care for and difficulty in identifying psychological distress is frustrating for patients and health professionals alike. The aim was therefore to gain more knowledge about the experience of living with psychological distress. Twelve persons (nine women and three men) aged 23–51 years were interviewed. Analyses were based on a phenomenological hermeneutic method and indicated that psychological distress may be seen as an imbalance (incongruence) between the self and the ideal self, which slowly breaks down a person's self‐esteem. This imbalance was described in three dimensions: Struggling to cope with everyday life, Feeling inferior to others and Losing one's grip on life. It seems to be associated with a gradual depletion of existential capacities and lead to dissatisfaction, suffering, poor self‐esteem and lack of control. As psychological distress may be a forerunner to mental, physical and emotional exhaustion, there is a need to initiate preventive or early interventions to avoid mental, physical and emotional chaos in such patients. Patients' with psychological distress need to be involved in a person‐centred salutogenic dialogue with health professionals to become aware of and strengthen their own capacities to regain health and well‐being.     

Elderly persons' experiences of living with venous leg ulcer: living in a dialectal relationship between freedom and imprisonment

The aim was to illuminate elderly persons' experiences of living with venous leg ulcer. Fifteen persons 74-89 years of age with active leg ulcer were interviewed. Data were analysed utilizing a phenomenological-hermeneutic approach inspired by Ricoeur. The analysis includes dialectic movement between understanding and explanation of the text as a whole and its parts. In the structural analysis four themes were identified: emotional consequences of altered body image, living a restricted life, achievement of well-being in connection with a painful wound and bandage, and struggle between hope and despair with regard to a lengthy healing process. The comprehensive understanding indicated that the meaning of living with venous leg ulcer can be understood as a dialectal relationship between, on the one hand the feeling of being imprisoned in the body, the bandage and the home, and on the other hand, hope of freedom from a burdensome body. The results indicate that the concept, body of image, is vitally relevant to the caring of elderly people with venous leg ulcer. The study shows the importance of recognizing the persons' perceptions of their leg ulcers and the impact of these perceptions on well-being. Nurses can thereby anticipate problems and provide more sensitive care.     

Psychosocial issues during the treatment of non‐muscle invasive bladder cancer

The psychosocial impact of intravesical therapy with Bacillus Calmette‐Guerin (BCG) and Mitomycine (MMC) is an issue that urological oncology nurses are confronted with. It was unclear to us as to how many patients are confronted with psychosocial issues during treatment and we wanted to gain more understanding regarding the impact of intravesical therapy with BCG or MMC. We could find only a few studies regarding quality of life and psychosocial issues of patients undergoing intravesical therapy. The aim of this study was to assess which psychosocial issues, patients are confronted with during intravesical therapy with BCG or MMC, and the impact thereof on daily life, social, emotional and physical well‐being. A quantitative study was conducted in a general hospital on 80 men and women undergoing intravesical therapy with BCG or MMC, aged between 40 and 94. Data were collected by using the EORTC BLS‐24, the Psychosocial Distress screening tool and a questionnaire collecting demographic data. Results from this study showed that 32% of the participants indicated that intravesical therapy had an impact on emotional and physical well‐being. Specific items were fatigue (55%), feeling out of shape/physical condition (39%), lack of sleep (34%) and muscle strength (23%). Emotional items were depression/gloom (28%), anxiety (28%), coping with emotions (28%) and self‐confidence (20%). In our study we observed a statistically significant difference between patients undergoing intravesical therapy with BCG or MMC. BCG intravesical therapy had more of a psychosocial impact, a statistically significant difference (P < .001). We also observed an increase in psychosocial burden over a period of time in participants undergoing BCG maintenance therapy. Nurses need to be aware that intravesical therapy does have an impact on daily life, social, emotional and physical well‐being, and that patients have psychosocial issues which need to be addressed.     

'The intruder': spouses' narratives about life with a chronically ill partner

Aim. The aim of this study was to illuminate the meaning of middle‐aged spouse's experiences of living with a chronically ill partner. A purposive sample of four female spouses was selected for interviews using a narrative approach. Background. When someone is diagnosed with a chronic illness, it is easy to understand that a considerable number of devastating consequences follow, both for the afflicted as well as for the family. Families often feel neglected and that their problems and needs are underestimated, if they do not personally draw attention to this fact. Methods. A phenomenological hermeneutic method, inspired by the philosophy of Ricoeur, was used when interpreting the interview text. Results. The experiences of spouses living with a chronically ill partner often brought a feeling of detachment from their partner's lives. The women experienced changes in their relationships because of their partners’ disabilities; they had emotions of loneliness, despite living together as a couple. Through their actions, the women sought reassurance and support in order to maintain a meaningful partnership with their spouses and this is expressed in three themes: feelings of limitation, the struggle of everyday life and a striving for normalization. Conclusions. Middle‐aged women living with a chronically sick partner are still of an active disposition and regard themselves as still being in mid‐life. They wish to be loved as a wife and not as a care provider. Relevance to clinical practice. The findings from this study can help increase the knowledge and understanding of the problems and concerns encountered by middle‐aged spouses living with chronically ill partners and can be useful in the education and supervision of nurses and in relationship with relatives.