Facilitating and constraining factors on autonomy: the views of stroke patients on admission into nursing homes

This article describes a model changing autonomy which was developed in a grounded theory study among stroke patients on admission into nursing homes for rehabilitation. Three dimensions of autonomy were identified: self-determination, independence, and self-care. On admission, patients' conditions (disabilities, multimorbidity, emotional state, and feeling like a layperson) and patients' strategies (waiting and seeing, and acting as a subordinate) constrain autonomy. Several environmental factors facilitate patient autonomy. The nursing home sustains patient autonomy by providing a hopeful atmosphere and room for autonomy. The health professionals facilitate autonomy by giving therapy, support and information, attentiveness and respect, paternalism and teamwork, Facilitating strategies of the family encompass emotional and instrumental support Care routines, lack of privacy, an unfamiliar environment, waiting periods, boredom, and lack of information were identified as constraining environmental factors. Developing guidelines and multidisciplinary courses regarding the approach to patient autonomy on admission is recommended.     

Autonomy in stroke rehabilitation: the perceptions of care providers in nursing homes

Twenty-seven health care providers from three nursing homes were interviewed about the autonomy of stroke patients in rehabilitation wards. Data were analysed using the grounded theory method for concept development recommended by Strauss and Corbin. The core category 'changing autonomy' was developed, which identifies the process of stroke patients regaining their autonomy (dimensions: self-determination, independence and self-care), and the factors affecting this process (conditions (i.e. circumstances) and strategies of patients; strategies of care providers and families; and the nursing home). Teamwork on increasing patient autonomy is recommended, which can be stimulated by multidisciplinary guidelines and education, and by co-ordination of the process of changing autonomy.     

Supporting stroke patients' autonomy during rehabilitation

In a qualitative study, 22 stroke patients undergoing rehabilitation in three nursing homes were interviewed about constraints on and improvements in their autonomy and about approaches of health professionals regarding autonomy. The data were analysed using grounded theory, with a particular focus on the process of regaining autonomy. An approach by the health professionals that was responsive to changes in the patients' autonomy was found to be helpful for restoration of their autonomy. Two patterns in health professionals' approach appeared to be facilitatory: (1) from full support on admission through moderate support and supervision, to reduced supervision at discharge; and (2) from paternalism on admission through partial paternalism (regarding treatment) to shared decision making at discharge. The approach experienced by the patients did not always match their desires regarding their autonomy. Support and supervision were reduced over time, but paternalism was often continued too long. Additionally, the patients experienced a lack of information. Tailoring interventions to patients' progress in autonomy would stimulate their active participation in rehabilitation and in decision making, and would improve patients' preparation for autonomous living after discharge.     

Self-Determination in Surgical Patients in Five European Countries

OBJECTIVE: To analyze the effects of informational support, desire for behavioral involvement in health decision-making (behavioral involvement), opportunities to make decisions, and independence on subjective health status in surgical patients. A theoretical model of self-determination was applied and tested. METHODS: The data were collected by structured questionnaires with a sample of 1,454 surgical patients in five European countries. LISREL analyses were used to test the theoretical causal model of self-determination. RESULTS: Patients' perceptions of informational support received from nursing professionals and their desired involvement in health decision-making affected patients' opportunities to make decisions and further their independence level, which in turn affected patients' subjective health status. CONCLUSIONS: Understanding of factors that increase self-determination in patients can help health care professionals to promote patients' well-being.     

Autonomy in the Rehabilitation of Stroke Patients in Nursing Homes. A Concept Analysis

This article presents a concept analysis of autonomy in relation to the rehabilitation of stroke patients. Analysis of the results of a literature survey provided three important concepts of autonomy in the field of biomedical ethics: self-governance, self-realization and actual autonomy. These concepts are compared with concepts from caring sciences and summarized in a table. The results indicate the importance of the social environment (formal and informal caregivers) for the restoration of autonomy. Because of the patient's condition and context, a social concept of autonomy makes more sense in the rehabilitation of stroke patients in nursing homes than does an individual concept. The concept analysis sheds light on the fact that the majority of studies regarding patient autonomy are primarily based on theoretical reflections, not on empirical studies. More research is warranted to gather information on how patients themselves consider and appreciate autonomy during rehabilitation, to explore the views of stroke patients' formal and informal caregivers and to investigate whether a social concept of autonomy is suitable for all phases of rehabilitation. Concerning the practice of rehabilitation, no definite conclusion can be given as yet.     

Exploring the role of the district nurse in rehabilitation

This article reviews the available literature to examine the district nurse's contribution to rehabilitation of the older patient in the community. It is argued that policy and demographic changes indicate that there is a demand for nursing care in the home that enables individuals and their carers to live with chronic health problems and develop strategies that maintain and improve their health. The ways in which district nurses incorporate an understanding of patient rehabilitation within their work is discusses. It is suggested that although there is an expectation that district nurses can and should be involved in planning and supporting rehabilitation for their patients, the process is often poorly defined, hampered by contextual problems and dependent on the cooperation and support of others. Furthermore, in specific areas of care such as cardiac rehabilitation and services for those recovering from stroke, there would appear to be an increase in specialist nurses who either undertake or coordinate the rehabilitation process for patients. This raises questions regarding how district nurses should develop their skills in rehabilitation and what strategies could be adopted to develop patterns of work that ensure collaboration and development rather than overlap and duplication.     

The meaning of rehabilitation in the home environment after acute stroke from the perspective of a multiprofessional team

BACKGROUND AND PURPOSE: Intervention programs for home-based rehabilitation are not fully described in the literature, and rehabilitation team members' experiences and tacit understanding of working with patients after stroke in the home environment need to be further understood. The aim of this study was to identify the meaning of rehabilitation in the home environment after stroke from the perspective of members of a multiprofessional team. SUBJECTS: Thirteen members of a multiprofessional outreach team (physical therapists, occupational therapists, speech and language therapists, and a social worker) working at a geriatric hospital in Stockholm, Sweden, participated in the study. METHODS: A qualitative method (the Empirical Phenomenological Psychological method) was used, with data being obtained from retrospective interviews of the team members after completing home-based rehabilitation of patients after acute stroke. RESULTS: One main theme ("supporting continuity") and 4 subthemes ("making a journey together from hospital to home," "enabling experiences of functioning," "refraining from interventions-encouraging patient problem-solving skills," and "looking for a new phase-uncertain endings") were revealed. DISCUSSION AND CONCLUSION: The findings suggest that contextual factors, both environmental and personal, were considered to be of great importance by the members of the multiprofessional team and were accounted for when they were working in the home environment in the rehabilitation of patients after stroke. Contextual factors detected in the home environment gave valuable information to the team members, who used the information in their strategies to assist the patients in finding continuity in their daily life and to link the past to the present and the "new body" to the "old body."     

Rehabilitation After Stroke

The more severely involved the stroke patient is or the greater is the pre-existing physical disability, the greater is the need for special rehabilitation services to restore him to his optimal level of performance. The availability of resources in the family and community are important factors in determining whether or not the patient will need to be treated in a rehabilitation center. There is no contraindication to early initiation of rehabilitation and those patients for whom rehabilitation is initiated immediately after the stroke have the most rapid and optimal recovery. Ninety to 95 percent of hemiplegics can learn to walk. Forty percent of hemiplegics get good return of function in their upper extremity. Sixty-five percent of hemiplegics become independent in self-care and ambulation. For the stroke patient who does not have complicating disabilities independence in self-care and ambulation can be accomplished in 4 to 8 weeks. Intellectual or emotional problems indicate the need for a carefully planned rehabilitation program. The families of stroke patients need counseling and training regarding their responsibilities and duties to the patient.     

Quality of life in the care home: a qualitative study of the perspectives of residents with multiple sclerosis

Purpose: Care home residents with multiple sclerosis (MS) are more physically dependent than the average residents. However, little is known about their quality of life (QoL). We investigated the experiences of residents with MS using qualitative research methods and developed a conceptual model of QoL. Methods: Twenty-one people with MS (age range 43-80 years) residing in a range of care homes were interviewed. The interviews were transcribed verbatim and analyzed using the constant comparative method. Results: Four core model domains identified were as follows: (i) What the care home means to the residents, (ii) Self, (iii) Environmentand (iv) Relationships. Some residents reported that care homes can relieve the burden on family, address specific environmental issues regarding safety and act as a form of social support. However, some reported isolation and difficulties adjusting to life in the care home. Having access to rehabilitation strengthened the feelings of independence within the care home. Conclusions: QoL is a broad, multidimensional construct for residents with MS. QoL measures for residents with MS should incorporate broad domains, including environmental factors. The conceptual model highlighted several areas for improving QoL of residents with MS, including more involvement of family members, encouraging independence by providing access to rehabilitation and providing support in the transition process. [Box: see text].     

Strategies for autonomy used by people with cervical spinal cord injury: a qualitative study

Purpose. To identify strategies used by people with high cervical spinal cord injury (SCI) to function autonomously. A multidimensional concept of autonomy was used, with four dimensions: independence, self-determination, participation and identification.

Methods. Qualitative methods were used, involving literature study and semi-structured interviews with eight individuals with high SCI who had been discharged from the rehabilitation centre for several years and were members of a sports club.

Results. Strategies for independence included making independent functioning a personal challenge and learning from others with SCI. Strategies for self-determination included keeping oneself informed, setting personal goals and being assertive. Strategies for participation were making challenges out of barriers, planning and organizing, asking and accepting help, and dealing with reactions from others. Strategies for identification involved taking life as it comes and focussing on positive aspects of life.

Conclusions. Different strategies are necessary for different dimensions of autonomy. Some strategies seem contradictory in terms of their effects on different dimensions of autonomy. Patients can be made aware of strategies for autonomy during the rehabilitation phase.     

Strategies for autonomy used by people with cervical spinal cord injury: A qualitative study

Purpose. To identify strategies used by people with high cervical spinal cord injury (SCI) to function autonomously. A multidimensional concept of autonomy was used, with four dimensions: independence, self-determination, participation and identification.

Methods. Qualitative methods were used, involving literature study and semi-structured interviews with eight individuals with high SCI who had been discharged from the rehabilitation centre for several years and were members of a sports club.

Results. Strategies for independence included making independent functioning a personal challenge and learning from others with SCI. Strategies for self-determination included keeping oneself informed, setting personal goals and being assertive. Strategies for participation were making challenges out of barriers, planning and organizing, asking and accepting help, and dealing with reactions from others. Strategies for identification involved taking life as it comes and focussing on positive aspects of life.

Conclusions. Different strategies are necessary for different dimensions of autonomy. Some strategies seem contradictory in terms of their effects on different dimensions of autonomy. Patients can be made aware of strategies for autonomy during the rehabilitation phase.     

Stroke Patients in Long-Term Care

The closest relatives of 29 permanently institutionalized stroke patients were interviewed about their relationship to the patient before and after stroke, the functional ability of the patient before and after stroke, and their opinion of an appropriate care setting for the patient. The patients had all been independent before stroke, but were now dependent on help with most primary activities of daily living. Twelve patients had severe communicative difficulties. Most relatives could not suggest a realistic alternative to nursing home care, due to the patients' severe disabilities and extensive need for care. One patient was, however, later discharged to a sheltered living facility in accordance with her relative's wishes. One-third of the relatives expressed need for more information and support and wanted to take part in a support group. The nursing staff need high competency in providing good care for the patients and offering psychological support to the relatives, and should include the relatives in the overall treatment plan.     

Rehabilitative placement of poststroke patients: reliability of the Clinical Practice Guideline of the Agency for Health Care Policy and Research

OBJECTIVE: To determine the interrater reliability of the United States Agency for Health Care Policy and Research (AHCPR) Clinical Practice Guideline Number 16 for rehabilitative placement of poststroke patients. DESIGN: Pairs of rehabilitation professionals, highly trained in the Guideline, rated the appropriateness of rehabilitative placements. SETTING: Acute care hospitals in three regions of the country. PATIENTS: Sixty patients with moderate-to-severe stroke. MEASURES: Numerous factors affecting appropriate placement according to the Guideline were abstracted from medical records or obtained by direct evaluation of patients. RESULTS: Good reliability was attained for home and nursing facility placement with rehabilitation services but with no multidisciplinary rehabilitation program (intraclass correlation coefficient = .73 and .60, respectively). Serious reliability problems were found for placements in low-intensity outpatient rehabilitation and high-intensity inpatient rehabilitation programs. Chief sources of unreliability were ambiguous or missing data in hospital medical records, complexities in the Guideline, and raters' tendencies to follow their own clinical judgments. More than one type of placement was appropriate for 65% of patients. CONCLUSIONS: Reliable placement guidelines are possible, but aspects of the Guideline require additional development. Evidence of demonstrated reliability and validity will be required to resolve disputes between rehabilitation professionals and payers regarding appropriate levels and types of rehabilitation and to guide patients and their families.     

Perceived losses following stroke

Adjustment to disability following a stroke may involve coming to terms with a variety of losses. The purpose of this exploratory, cross-sectional survey was to describe losses experienced following a stroke as perceived by patients and their spouses. The data were derived from interviews with 60 middle-aged and older couples in which one person had suffered a stroke. Content analysis of the responses to open-ended questions about perceived losses yielded three major categories of loss: 1. activities, 2. abilities and characteristics, and 3. independence. The loss most often mentioned by patients was mobility; by spouses, traveling. When responses were examined by sex, the loss mentioned most frequently by both male and female spouses identified traveling as what they missed most after the stroke. Examination of losses in relation to length of time since the stroke revealed independence as a prominently mentioned loss for most groups. Comparison by cerebral hemisphere damaged revealed that patients with right-brain damage missed their independence while patients with left-brain damage missed mobility. The findings of this study support two major aspects of rehabilitation nursing practice: facilitation of patient independence, and consideration of spouse or caregiver's need for support or respite care on a long-term basis.     

Stroke patients' experiences of sharing rooms with dementia patients in a nursing home

BACKGROUND: The mixed units that place lucid and dementia patients in same rooms have been viewed to benefit the dementia patients. However, many studies report negative attitudes of lucid residents towards mixed units, and there is a scarcity of research which explores the experiences of lucid residents while sharing rooms with the dementia patients in extended care homes. Currently many special care nursing facilities have mixed units in Korea, suggesting a need to examine their effects especially on cognitively lucid patients. OBJECTIVE: To explore lived experiences of stroke patients who were sharing rooms with patients with dementia in a nursing home. DESIGN: It was a qualitative study applying a phenomenological method to explore the experiences of stroke patients. SETTINGS: Data were collected in a specialized nursing home in Korea. The nursing home provides free medical and nursing care to persons suffering either from dementia or stroke. PARTICIPANTS: Fourteen participants without cognitive deficit and who were sharing rooms with dementia patients were recruited through a purposive sampling. METHOD: In-depth interviews RESULTS: Stroke patients sharing rooms with dementia patients were being seriously affected by intense, deeply disturbing, and persistent experiences. The experiences themselves seemed to evolve over time as each patient struggled on one's own to try to make sense out of what were happening. The stroke patients ended up having a sense of resignation and anger realizing that they had no power to change the policy or the situation. The stroke patients also were distraught about what were happening to themselves - change of their own character, continuous fear of becoming demented, and becoming to devalue life. They also became indifferent to others, and seemed to have lost motivation for activity resulting in a decreased or low activity level. Several personal and environmental factors were identified that tended to increase the level of suffering. We suggest that the whole concept of mixed units require further exploration, and there is a need for a comprehensive staff education program to help the staff become aware of the problems and provide support to patients. Orientation of stroke patients regarding dementia is also suggested.     

脑卒中病人出院后对延续性护理意愿和需求的质性研究

[目的]评估脑卒中病人出院后对延续性护理的意愿和需求,为此类病人家庭护理支持提供依据及建议,从而提高病人的运动功能及生活质量。[方法]对10例脑卒中病人进行半结构式访谈,通过质性研究现象学分析法对资料进行整理和分析,并提炼主题。[结果]对脑卒中病人出院后延续护理意愿和需求的真实体验提炼出5个主题,包括健康知识相关方面的需求、对经济方面的需求、居家康复的需求、社会方面的支持及负性情绪增加。[结论]延续性护理在脑卒中病人人群中需求度高,今后应加强社区康复的建设,使社区康复和医院康复相结合,制定出针对脑卒中病人的延续性护理方案。