Bente Martinsen

The extended arm of health professionals? Relatives' experiences of patient's recovery in a fast-track programme.

AIMnTo report a study of the lived experience of being a close relative to a patient with colon cancer participating in a fast-track programme.nnnBACKGROUNDnStudies have documented that postoperative recovery can be accelerated and that hospitalization can be reduced through fast-track programmes. Due to the early discharge and the increasing demands on patients for self-care, patients relatives seem to play a pivotal role in fast-track programmes. However, research is limited into how patients close relatives are affected by and involved in the postoperative recovery process.nnnDESIGNnA descriptive phenomenological approach using Reflective Lifeworld Research.nnnMETHODSnThe study was carried out within the descriptive phenomenological framework of Reflective Lifeworld Research. Data were collected in 2008 from in-depth interviews with twelve relatives.nnnFINDINGSnRelatives experienced a huge responsibility for both the patients well-being and for the patients compliance with the daily regimen. Relatives were caught in a conflicting double role. They were the extended arm of the health professionals but also the caring, supporting partner. A tension arose between relatives desire to help the patient by taking an active part in the recovery process and the feelings of not always having the resources needed.nnnCONCLUSIONnRelatives seem to suffer in silence as they bear the burden of the patients diagnosis, the disruption of life, and the taken-for-granted responsibility for the patients recovery process. From an existential perspective, this caring responsibility can be understood as ethical pain. Relatives should be seen as a distinct group with special caring needs of their own.

Living with clipped wings - Patients’ experience of losing a leg

This study explores the lived experience of losing a leg as described by the patients themselves post-discharge. Studies have documented that regardless of aetiology patients are faced with severe physical as well as psychosocial challenges post-amputation. However, only few studies explore in-depth the patients perspective on the various challenges following the loss of a leg. The study uses the phenomenological approach of Reflective Lifeworld Research (RLR). Data were collected from 24 in-depth interviews with 12 Danish patients. Data analysis was performed according to the guidelines given in RLR. The essential meaning of losing a leg is a radical and existential upheaval, which restricts patients lifestyle and irretrievably alters their lifeworld. Life after the operation is associated with despair, and a painful sense of loss, but also with the hope of regaining personal independence. The consequences of losing a leg gradually materialize as the patients realize how the loss of mobility limits their freedom. Patients experience the professional help as primarily directed towards physical care and rehabilitation. The findings show that the loss of a leg and, subsequently, the restricted mobility carry with them an existential dimension which refers to limitation of action space and loss of freedom experienced as an exclusion from life. Our findings demonstrate a need for complementary care and stress the importance of an increased awareness of the psychosocial and existential consequences of losing a limb.This study explores the lived experience of losing a leg as described by the patients themselves post-discharge. Studies have documented that regardless of aetiology patients are faced with severe physical as well as psychosocial challenges post-amputation. However, only few studies explore in-depth the patients’ perspective on the various challenges following the loss of a leg. The study uses the phenomenological approach of Reflective Lifeworld Research (RLR). Data were collected from 24 in-depth interviews with 12 Danish patients. Data analysis was performed according to the guidelines given in RLR. The essential meaning of losing a leg is a radical and existential upheaval, which restricts patients’ lifestyle and irretrievably alters their lifeworld. Life after the operation is associated with despair, and a painful sense of loss, but also with the hope of regaining personal independence. The consequences of losing a leg gradually materialize as the patients realize how the loss of mobility limits their freedom. Patients experience the professional help as primarily directed towards physical care and rehabilitation. The findings show that the loss of a leg and, subsequently, the restricted mobility carry with them an existential dimension which refers to limitation of action space and loss of freedom experienced as an exclusion from life. Our findings demonstrate a need for complementary care and stress the importance of an increased awareness of the psychosocial and existential consequences of losing a limb.

The meaning of assisted feeding for people living with spinal cord injury: a phenomenological study

AIMnThis paper is a report of a study to explore the meaning of assisted feeding through the experiences of people with high cervical spinal cord injury. Background. Eating difficulties are known to affect a persons self-image and transform social lives. Little is known about the experience of assisted feeding as a permanent situation.nnnMETHODnSixteen people with high cervical spinal cord injury were interviewed twice within a period of 18 months in 2005-2006. The second interview was combined with observation. Transcriptions of interviews and notes from the observations were analysed using the phenomenological guidelines by Dahlberg and colleagues.nnnFINDINGSnThe essence of the phenomenon assisted feeding was described as a constructed pattern based on coordinated attention between the person with high cervical spinal cord injury and the helper. The constituents of the essence were: paralysis as a condition of life, facing the altered meal, reconciling with diminished bodily anchoring, sensitive cooperation between self and helper, realization of own values around meals, balanced use of meal-related devices and negotiating relationship with helpers.nnnCONCLUSIONnAssisted feeding should be adjusted to each individual person. Fixed procedures or routines should be avoided and assistive devices used with care. We recommend that continuity in the cooperation between the parties involved in assisted feeding is given priority, and that personal standard and social norms around meals are acknowledged.

Dependence on care experienced by people living with Duchenne muscular dystrophy and spinal cord injury.

ABSTRACT Being dependent on care in a hospital or in a traditional homecare setting may generate an experience of inferiority in patients. In a private home, dependence is easier to bear if the dependent person has the possibility to influence the planning of care. Little is known about the experience of being dependent on care in a private home, where the dependent person employs his or her own helpers. The aim of this study was to describe the meaning of dependence on care in a private home setting among people living with help requirements for all aspects of daily life. The article draws on two interview studies of people with high cervical spinal cord injury and men with Duschenne muscular dystrophy. Transcriptions of the interviews were analyzed according to a phenomenological hermeneutic approach influenced by Paul Ricoeur’s philosophy of interpretation. The meaning of all the interview texts is presented as four short stories. Four themes were identified: the helper as liberating, the paramount verbalization of own needs, the creative engagement in life, and accessibility as an issue in everyday life. Dependence on care was identified to be a movement between freedom and restriction, where the helpers played a crucial role, because it was key that they were sensitive to the signals they got and were able to transform words into meticulous actions.

Nurses’ and nurse assistants’ beliefs, attitudes and actions related to role and function in an inpatient stroke rehabilitation unit—A qualitative study

AIMS AND OBJECTIVESnTo explore nurses and nurse assistants beliefs, attitudes and actions related to their function in an inpatient stroke rehabilitation unit.nnnBACKGROUNDnSeveral attempts have been made to describe nurses roles and functions in inpatient neurorehabilitation. However, current understandings of the contributions that nurses and nurse assistants make to neurorehabilitation remain sparse.nnnDESIGNnDescriptive, interpretive qualitative study.nnnMETHODSnParticipant observations were conducted during 1xa0month in a stroke rehabilitation unit at a university hospital in the Capital Region of Denmark. The observations were audiorecorded and field notes were taken on the spot. Semistructured interviews with nurses (Nxa0=xa08) and nurse assistants (Nxa0=xa06) were performed. The audiorecorded observations, field notes and interviews were transcribed for inductive and deductive content analysis.nnnRESULTSnThree main categories with underlying subcategories were identified: (i) the importance of professionalism, (ii) striving for visibility, (iii) the importance of structure.nnnCONCLUSIONnThis study contributes to present understandings of nurses and nurse assistants roles and functions in inpatient stroke rehabilitation. We obtained insights into nursing staffs beliefs and attitudes about rehabilitation-as well as their own role and function-and furthermore how the latter affects their actions in daily practice.nnnRELEVANCE TO CLINICAL PRACTICEnThe nursing role and function are still not clearly defined. Further education is needed to strengthen the contribution of nursing staff to patients rehabilitation. Furthermore, focus on developing a professional language and a framework that supports continuity within daily care and rehabilitation is needed.

Observations of assisted feeding among people with language impairment

AIMS AND OBJECTIVESnThis study examines the phenomenon of assisted feeding among people with language impairment.nnnBACKGROUNDnPatients experience of assisted feeding is influenced by the caregivers availability and their other responsibilities. Also, caregivers and patients may have different values with respect to assisted feeding.nnnMETHODSnInstances of assisted feeding (n=42) were observed among people with language impairment admitted to a neurological ward. Field notes were taken simultaneously and in some cases a few simple questions were posed to the caregivers or the patients. All notes and answers were analysed using the phenomenological guidelines of Dahlberg and colleagues (2008, Studentlitteratur AB, Stockholm).nnnRESULTnThe essence of assisted feeding among people living with language impairment was identified to be a transaction characterised by efficiency. The constituents of the essence were in the shadow of institutional structures, accidental relationships with potential humiliation, meal-related conventions versus respect for the individuals wishes, sense of joy threatened by goal-related determination time being significant for the course of the meal.nnnCONCLUSIONnThis study shows that assisted feeding is not important enough to postpone other activities in a neurological ward. Although assisted feeding is an opportunity to enjoy mutual contact and exchange information between the patient and the caregiver, it is a situation where the nutritional aspect of the meal tends to take precedence. We recommend that the focus of recent years on the patients nutritional status is now supplemented by improvement in the relational and affective aspects of meals, especially for people who require assistance to eat.nnnRELEVANCE TO CLINICAL PRACTICEnThe findings indicate that the institutional conditions for meals need to be reconsidered. For instance caregivers could be exempted from other responsibilities during mealtimes. More flexible time-limits for meals depending on the number of patients with extensive assistance needs is another possibility.

Experiences of intermediate care among older people: a phenomenological study

In the UK, intermediate care (IC) is conceived as a range of service models aimed at care closer to home and involves the expansion and development of community health and social services. Intermediate care in Denmark is more clearly defined, where approximately 45% of all the counties in Denmark have established a community-based IC unit in which public health-care services are offered to older people who have completed their hospital treatment. The impact of this organisational initiative is yet to be explored. In particular, the knowledge of the patient perspective is sparse and contradictory. The aim of the study was to explore how older people experience being in an IC unit after hospital discharge and before returning to their home. Data were drawn from 12 semi-structured interviews. Transcripts were analysed using a phenomenological approach. The essence of being in an IC unit was envisioned as moments of conditional relief that emerged from the following constituents: accessible, embracing care, a race against time, meals-conventions with modifications, contact on uneven terms, life on others terms, and informal but essential help.

Getting to Know Patients' Lived Space

Abstract The present paper explores patients’ experience of lived space at the hospital and at home. To expand the understanding of the existential meaning of lived space the study revisited two empirical studies and a study of a meta-synthesis on health and caring. Phenomenological philosophy was chosen as a theoretical framework for an excursive analysis. The paper demonstrates that existential dimensions of lived space at the hospital and at home differ significantly. For the patients, the hospital space means alien territory as opposed to the familiar territory of home. To some extent the experienced differences are due to the physical environment; however, as our analysis shows, other and more significant meanings are also involved. For patients, lived space at the hospital primarily concerns the influence of complex institutional power structures and specific cultural and social conventions, e.g. the role of the good patient and the ambiance of hospitals. Home, on the other hand, offers familiar lived space in which patients feel protected and safe. Further, the paper relates patients’ experience of lived space to a phenomenological view of lived space in order to illustrate the radical influence of illness on patients’ lifeworld and experience of lived space. The combination of illness and general discomfort may influence patients’ experience of home negatively; the former experience of home as a sanctuary changes into feelings of being left on one’s own and burdened by too much responsibility. Consequently, in the light of the increasing focus on patients’ self-monitoring at home, it is important for healthcare professionals to recognize the influence of spatial aspects on patients’ well-being both at the hospital and at home.

Caregivers’ lived experience of assisted feeding

AIMS AND OBJECTIVESnThe aim of this study was to explore caregivers experience of assisted feeding.nnnBACKGROUNDnAssisted feeding presupposes a technical and creative coordination of the behaviour of the caregiver and the person who needs assistance. To achieve this, the two parties must be able to perceive and interpret each others verbal and non-verbal behaviour and respond.nnnDESIGNnA qualitative approach using in-depth semi-structured interviews conducted with caregivers was used.nnnMETHODSnTwelve caregivers with different educational background (nurses and care assistants) were interviewed during 2010. Transcriptions of interviews were analysed using the phenomenological guidelines by Dahlberg and colleagues.nnnRESULTSnThe essence of assisted feeding among caregivers was identified to be a healing activity creating a basis for recovery. The constituents of the essence were as follows: with simulated calmness, with the nutritional aspect in mind, with relatives as source and resource, with work experiences and personal preferences as reference points and with inconsistent reactions to patient behaviours.nnnCONCLUSIONnWhen performing assisted feeding, caregivers adjust their care to the individual patient drawing on their personal knowledge and empathy. They mainly focus on the nutritional aspect of assisted feeding but also take their own beliefs and societal norms around eating into consideration. There seems to be a tension between the importance caregivers assign to the nutritional aspect of assisted feeding and the low status this task holds, not only in the hierarchy of hospital activities but also among caregivers.nnnRELEVANCE TO CLINICAL PRACTICEnAn overriding guideline for assisted feeding should be formulated, so that the activity will be less dependent on the individual caregivers personal beliefs, time pressure and the character of the surroundings.

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.