The bereavement model, stroke and rehabilitation: a critical analysis of the use of a psychological model in professional practice

Purpose: This pilot study aimed to explore with stroke survivors, carers and professionals, the impact of stroke and the process of recovery and rehabilitation. One theme that emerged in interviews with professionals was their use of the bereavement model in relation to recovery from stroke. The purpose of this paper is to explore the ways in which professionals use the bereavement model to explain and manage the rehabilitation of stroke survivors.

Method: A person-centred study using qualitative research methods, semi structured interviews and self report diaries to explore with stroke survivors and carers the impact of stroke on their lives. Twenty-five interviews with stroke survivors, 23 individual or with carers and seven in two focus groups. Evidence from four self- report diaries provided more detailed examples of the everyday experiences of the survivors. A set of parallel interviews involving 17 professionals involved in the care and support of such individuals, nine individual and one group interview involving a community rehabilitation team.

Results: The bereavement model can be identified in the literature aimed at professionals, and was evident in some professional accounts of stroke but was absent from survivors' and carers' accounts of stroke. In over half the interviews, professionals made reference to the bereavement model to explain a process of loss and readjustment. While survivors in their accounts of life after a stroke did acknowledge the ways in which stroke disrupted every-day life and resulted in losses and disabilities, their perception of such losses and disruption was shaped by the context of their every-day life. Most survivors sought to actively manage their recovery by setting goals. They wanted professional support in achieving their goals. The bereavement model appeared to be used by professionals in situations where there was a conflict over goals and professionals felt that survivors had become 'stuck' and their goals unrealistic.

Conclusions: Following stroke, people try to make sense of what has happened and normalize their lives by setting themselves goals to progress towards recovery. It is important that professionals communicate effectively so that their interventions are grounded in and support the survivors' goals and strategies.     

The meaning and experience of being a stroke survivor: an interpretative phenomenological analysis

Purpose: To investigate the meaning and experience of being a stroke survivor.

Method: Qualitative in-depth semi-structured interviews were conducted with 10 stroke survivors (five face-to-face and five e-mail interviews). The interview data were transcribed verbatim (these were pre-transcribed in e-mail exchange) and analysed using Interpretative Phenomenological Analysis.

Results: Four themes emerged from the analysis: Disrupted embodiment and the loss of self; Invisibility of emotional difficulties; Gender, romance and sexuality; and Social interaction. These themes, respectively, revealed that participants often had difficulties with psychological adaptation to the physically disabling aspects of their stroke; they experienced enduring and disabling emotional difficulties; they had a particular concern for the viability and maintenance of romantic and sexual relationships; and they often became socially withdrawn, resulting in an increased pressure on familial caregivers.

Conclusion: The findings of the present work suggest the need for post-stroke counselling regarding romantic and sexual relationships, as well as promoting acceptance of some of the physical disabilities that come with having a stroke and encouraging positive self-regard. There would also appear to be a need to address the issue of social withdrawal and familial relationships, perhaps when health professionals convey information regarding the person's stroke, and in counselling targeted specifically at family caregivers.     

Family carers of stroke survivors: needs, knowledge, satisfaction and competence in caring

Purpose. To examine the support required by family carers for stroke survivors.

Methods. Forty-two family carers were recruited for surveys of needs, knowledge, satisfaction, and competence in caring before and 4 - 6 weeks after discharge from an Acute Stroke Unit (ASU).

Results. Information deficits about dealing with psychological, emotional, and behavioural problems and local service information were priorities before and after discharge. Younger female carers (under 56 years) were least satisfied with communication with ASU staff. Face to face contact was valued. After discharge younger female carers, particularly of non-White ethnic groups, reported lower levels of competence in caring and higher burden. Knowledge of stroke risk factors was low in all groups. High satisfaction with treatment and therapy in the ASU, was not transferred to the community. Carers reported feeling alone and described uncoordinated services.

Conclusions. Carers are able to anticipate and prioritise their needs, value communication with staff and involvement with discharge-planning, but particular difficulties were experienced by younger female carers and those from non-White ethnic groups. This requires particular attention when developing targeted interventions for family carers from a mixed ethnic community. In-depth and longitudinal studies are needed to detail psychosocial needs and guide practice particularly amongst non-White family carers.     

Learning to eat after radiation therapy for throat cancer

Purpose: The initial purpose was to find more expedient ways for learning to eat for personal rehabilitation. The secondary purposes were to inform other radiation therapy patients and to inform clinicians and therapists involved in rehabilitation of throat cancer patients.

Method: This is an account of personal experiences of the author who is a throat cancer survivor. This rehabilitation engineer, and his social worker wife, systematically sought and found more effective ways for learning to eat again.

Results: More effective approaches for discovering, preparing, presenting and consuming food by recovering throat cancer patients were identified.

Conclusion: The rehabilitation process for patients with radiation damage to the throat can be enhanced through simple methods and dedicated efforts of the patients themselves.     

Upper limb recovery after stroke: the stroke survivors' perspective

Purpose. This study investigated stroke survivors' perspective of upper limb recovery after stroke. The aim was to determine factors other than medical diagnosis and co-morbidities that contribute to recovery. The objectives were to explore how stroke survivors define recovery, identify factors they believe influence recovery and determine strategies used to maximize upper limb recovery.

Method. A qualitative study consisting of three focus groups and two in-depth interviews was conducted with stroke survivors (n = 19) and spouses (n = 9) in metropolitan, regional and rural Queensland, Australia. Data were analysed using principles of grounded theory.

Results. Stroke survivors maximize upper limb recovery by 'keeping the door open' a process of continuing to hope for and work towards improvement amidst adjusting to life with stroke. They achieve this by 'hanging in there', 'drawing on support from others', 'getting going and keeping going with exercise', and 'finding out how to keep moving ahead'.

Conclusions. This study provides valuable insight into the personal experience of upper limb recovery after stroke. It highlights the need to develop training strategies that match the needs and aspirations of stroke survivors and that place no time limits on recovery. It reinforces the benefits of stroke support groups and advocates their incorporation into stroke recovery services. These findings can be used to guide both the development and evaluation of stroke survivor centred upper limb training programmes.     

Functional outcome in patients with critical illness polyneuropathy

Purpose: To evaluate the functional outcome of intensive care patients with critical illness polyneuropathy (CIP), 6 and 12 months after the onset.

Methods: Design: A prospective observational cohort study and a cross-sectional study.

Setting: University hospital in the Netherlands.

Patients: Eight consecutive intensive care patients with CIP for the prospective study and eight patients diagnosed with CIP in the past 6 months for the cross-sectional study.

Main outcome measures: Functional outcome regarding body functions and structure, activities, participation and perceived quality of life.

Results: Nine patients (56%) died within one year. Functional outcome, participation and subjective health status in survivors varied widely at 6 and 12 months. After 12 months, physical functioning was improved in all patients. However activities related to mobility outdoors, autonomy, participation and quality of life were restricted in most patients.

Conclusions: The majority of survivors have persistent functional disabilities in activities, reduced quality of life and restrictions in autonomy and participation one year after the onset of CIP. Prolonged rehabilitation treatment is necessary for an increasing number of intensive care patients who develop CIP, in order to reduce handicaps and achieve optimal autonomy and social participation.     

Living setting and utilisation of ADL assistance one year after a stroke with special reference to gender differences

Purpose. To examine living setting and need for ADL assistance before and one year after a first-ever stroke with special focus on gender differences.

Methods. One-year survivors from a population-based stroke study (n = 377) were studied with regard to place of living, need for ADL assistance and who provided the help. Stroke severity, cognitive impairment, post-stroke depression as well as risk factors were evaluated.

Results. Before the stroke 48 patients (13%) lived in special housing (service flats or nursing homes), and one year after the stroke, 50 of the survivors (20%) lived in such accommodations. Before the stroke, 80 (21%) of the patients needed help with their personal ADL, while 90 (36%) needed help after one year. The increased need was fulfilled by relatives. Female spouses more often helped their male counterparts, and they tended to accept a heavier burden. Age, living alone, stroke severity, cognitive impairment, pre-stroke ADL dependency and depression were predictors for special housing.

Conclusions. In a time when more and more stroke survivors are cared for at home, it is important to pay attention to the situation of the caregivers. Female caregivers seem to be in an especially exposed position by accepting a heavier burden.     

Psychological factors after traumatic amputation in landmine survivors: The bridge between physical healing and full recovery

Purpose: Limb loss due to a landmine injury is sudden and devastating. The resulting disability makes life challenging in a world where physical ability is the 'norm'. In order to better understand the psychological adjustments individuals make in their recovery from a landmine injury, the Landmine Survivors Network conducted an exploratory qualitative study to determine factors that contribute to an individual's recovery. The study examined psychosocial aspects, coping strategies, and resilience characteristics of limb loss survivors across differing cultural, societal and economic backgrounds.

Method: Eighty-five participants (68 persons of limb loss, 10 family members, seven service providers) were interviewed using a semi-structured protocol in the USA and an open-ended format in six landmine affected countries. Data analysis was completed using grounded theory analytic strategies.

Results: Data indicated that the survivors' acceptance of limb loss and their state of psychological recovery were greatly influenced by the individual's resilience characteristics, social support, medical care, economic situation and societal attitudes toward people with disabilities.

Conclusion: Recovery from traumatic amputation in landmine survivors needs to be comprehensive and coordinated, and requires addressing the individual's physical, psychological, economic and social needs within the context of family, community, and the socio-cultural environment in which they live.     

The implementation and evaluation of a community rehabilitation team: a case study

Purpose: In the UK, intermediate care schemes have been implemented with short-term funding, targeted at reducing pressures on hospitals/nursing homes. Many have lacked a reliable evidence-base and there are few publications on one form of intermediate care, the community rehabilitation team (CRT). This study was conducted to establish whether one specific CRT should gain recurrent funding.

Methods: This qualitative case study took a multi-method, multi-perspective approach. Data sources included: three focus groups and 40 semi-structured interviews with patients, carers and health services/local authority/CRT staff, document review, and field notes. The resulting data were analysed thematically.

Results: The CRT was designed without sufficient reference to reliable evidence and consultation with local health/social services, and implemented against a background of cultural divides between and within these services. It was also hampered by an ambitious remit and premature attempts at outcome evaluation. Patients/carers were satisfied with interventions, functional gains and social aspects of input but there was no reliable evidence of cost-effectiveness.

Conclusions: The study highlighted problems related to service implementation, which exposed flaws within current policy of providing short-term funding for schemes that must demonstrate cost-effectiveness quickly in order to gain recurrent funding.     

Religious views of the 'medical' rehabilitation model: a pilot qualitative study

Purpose: To explore the religious beliefs that patients may bring to the rehabilitation process, and the hypothesis that these beliefs may diverge from the medical model of rehabilitation.

Methods: Qualitative semi-structured interviews with representatives of six major religions—Islam, Buddhism, Christianity, Judaism, Sikhism, and Hinduism. Representatives were either health care professionals or religious leaders, all with an interest in how their religion approached health issues.

Results: There were three recurrent themes in the interviews: religious explanations for injury and illness; beliefs about recovery; religious duties of care towards family members. The Buddhist, Sikh, and Hindu interviewees described beliefs about karma—unfortunate events happening due to a person's former deeds. Fatalistic ideas, involving God having control over an individual's recovery, were expressed by the Muslim, Jewish, and Christian interviewees. All interviewees expressed the fundamental importance of a family's religious duty of care towards ill or injured relatives, and all expressed some views that were compatible with the medical model of rehabilitation.

Conclusions: Religious beliefs may both diverge from and resonate with the medical rehabilitation model. Understanding these beliefs may be valuable in facilitating the rehabilitation of diverse religious groups.     

Long-term outcomes after moderate to severe traumatic brain injury

Objective: This research examined the long-term outcomes of rehabilitation patients with moderate to severe traumatic brain injury (TBI).

Design: Retrospective cohort study.

Setting and subjects: We examined consecutive records of persons with moderate to severe traumatic brain injury who were discharged from a large rehabilitation hospital in Pennsylvania from 1973 to 1989. We interviewed consenting participants (n = 306) up to 24 years post-injury.

Main outcome measures: Self-rated health, activity limitations, employment, living arrangements, marital status, Community Integration Questionnaire, and use of rehabilitation services.

Results: Participants were most limited in activities such as managing money and shopping. Twenty-nine per cent of our participants were working full time. There were significant relationships between activity limitations and residual cognitive impairment at follow-up. Self-rated health was correlated with most instrumental activities of daily living.

Conclusion: Our findings document health and function in a large post acute TBI population and implications for rehabilitation are discussed.     

Prognostic social factors in the subacute phase after a stroke for the discharge destination from the hospital stroke-unit. A systematic review of the literature

Purpose: The objective of our study was to identify prognostic social factors in the subacute phase after stroke for the discharge destination from the hospital stroke-unit.

Methods: A systematic literature search was performed, designed in accordance with the Cochrane Collaboration criteria. Internal, statistical and external validity of the studies were assessed using a checklist with 11 methodological criteria.

Results: Characteristics of the social situation that proved to be important for prediction of the discharge destination are marital status and social support. Quantity and methodological quality of the research studies were insufficient, and the number of possible social prognostic factors investigated was limited by the absence of a conceptual framework of social subdomains in the studies, including an unambiguous definition of the prognostic social factors within these subdomains.

Conclusions: A great need exists for research into the prognostic qualities of the following social factors: the ability to provide support, presence, and readiness of the homefront; the availability of professional care, personal financial means, membership of societies and clubs, frequency of contacts with close relatives and friends; the quality of the patient's residence with regard to the adaptation to the needs and abilities of the patient. A commitment about the aforementioned conceptual framework is mandatory.     

Issues for selection of outcome measures in stroke rehabilitation: ICF Body Functions

Purpose: To evaluate the psychometric and administrative properties of outcome measures assigned to the ICF Body Functions category, and commonly used in stroke rehabilitation research.

Method: Critical review and synthesis of measurement properties for five commonly reported instruments in the stroke rehabilitation literature. Each instrument was rated using the eight evaluation criteria proposed by the UK Health Technology Assessment (HTA) programme. The instruments were also assessed for the rigour with which their reliability, validity and responsiveness were reported in the published literature.

Results: The reporting of specific measurement qualities for outcome instruments was relatively consistent across measures located within the same general ICF category. Far less information was available on the responsiveness of measures, compared with reliability and validity. The best available instruments were associated with the following body functions: cognitive impairment, depression and motor recovery.

Conclusions: The reader is encouraged to examine carefully the nature and scope of outcome measurement used in reporting the strength of evidence for improved body functions in stroke rehabilitation since there is significant diversity. However there appears to be good consensus about what are the most important indicators of successful rehabilitation outcome in each domain of body function.     

Experiences of adolescents with cystic fibrosis during their transition from paediatric to adult health care: a qualitative study of young Australian adults

Purpose: Exploring the experiences of Australian adolescents with Cystic Fibrosis (CF) as they made the transition from paediatric to adult care. This often traumatic change of care was examined from the perspective of the two types of care, paediatric and adult, elements of a transition programme if available and psychosocial factors that may affect the transition.

Method: Focused-in-depth interviews were conducted with six young adults with CF(19 - 34 years), asking them to describe their experiences during the transition period.

Results: Thematic analysis of the transcribed interviews indicated that the four main areas that affected the transition experiences of the participants were paediatric and adult health care, the elements included in the transition programme, and psychosocial factors.

Conclusions: The relationship of the patient with their paediatric doctor, the doctor's attitude towards the transition and the delivery of age-appropriate care appeared to influence the experiences of adolescents as they changed to adult care. Successful elements of a transition programme, if it was offered, were the orientation tours, the provision of information and the presence of a familiar face at adult clinics. Transition experiences of individuals had potential effects on their psychological and physical well-being so that, in order to maximize quality of care, health professionals must be aware of factors which may improve transition experiences.     

Evaluation of a 5-level functional independence measure in a longitudinal study of elderly stroke survivors

Purpose: The aim of the present study was to evaluate a modified 5-level Functional Independence Measure (FIM), by using the assessments from a longitudinal study of elderly stroke survivors.

Method: One hundred and seventy-three patients were followed longitudinally. Firstly, the 7-level FIM™ was used at 0 - 3 days, 3 weeks, and 3 months and then after 1 year following acute stroke. The data, in total 8996 assessments, were presented on the item level. Secondly, the data were recoded with the help of a modified 5-level FIM according to the cut-off levels suggested in a previous study of the same target group. Two registered occupational therapists did the assessments in the patients' natural environment, i.e., in their own homes or in different kinds of assisted living. The data were obtained both by interviews and with the help observations, when the occupational therapist asked the patients to perform specific activities.

Results: The assessments on all four occasions were found to polarise when using the 7-level FIM™, and the intermediate levels of assistance were more seldom used. After the assessment data were recoded with the modified 5-level FIM, it was shown that it was easier to follow the process of activity by using an instrument with fewer levels. A modified 5-level FIM had enough levels to ensure sensitivity and was easier to handle when evaluating performance of daily activities in a large population study.

Conclusions: A modified 5-level FIM can be useful in large population studies and most likely increase reliability without losing in sensitivity.     

Characteristics of the Frenchay Activities Index one year after a stroke: a population-based study

Purpose. To further describe the properties of Frenchay Activities Index (FAI) with special emphasis on relationships with stroke severity and cognition.

Methods. Survivors from a population-based first-ever stroke cohort (n = 246) were assessed with FAI one year post-stroke. At the same time patients were asked about their status pre-stroke. Stroke severity was assessed at baseline with the NIH stroke scale (NIHSS). Cognition was assessed at one year with the Mini Mental State Examination (MMSE).

Results. Pre-stroke and post-stroke FAI averaged at 40.1 and 32.4, respectively. There was a floor effect post-stroke, where 17% had the lowest possible score. The sum score was related to age, but not to gender. Individual items, however, were gender-related. NIHSS was clearly related to the difference FAI pre-stroke - post-stroke, but individual variations were large. Individual NIHSS items differed regarding their impact on post-stroke FAI. MMSE post-stroke also has a clear relationship with FAI, but there are large individual variations.

Conclusions. This study establishes a population-based standard for FAI scores one year after a stroke. The effects of stroke severity and cognition have been demonstrated. FAI gives useful information that is not obtained from basic ADL scales, such as the Barthel Index.     

Reliability, validity and factor structure of the upper limb subscale of the Motor Assessment Scale (UL-MAS) in adults following stroke

Purpose: The upper limb items of the Motor Assessment Scale (MAS) have been shown to be a sensitive, valid and reliable measure of upper limb function for adults following stroke, however the validity and reliability of summing these items into an independent subscale has not yet been evaluated. The stability, internal consistency and construct validity of the upper limb MAS subscale (UL-MAS) was assessed in this study.

Method: Twenty-seven inpatients following stroke (mean age = 67 years, range = 40 - 80) were sampled from an acute, inpatient rehabilitation setting. Patients were evaluated with 'Upper Arm Function', 'Hand Movements', and 'Advanced Hand Activities' items of the MAS by masked physiotherapists who had received standardized training in administration of the MAS.

Results: All items were explained by one factor on confirmatory factor analysis and correlated significantly with one another and with the composite (summed total) score. Internal consistency analysis produced a Cronbach's alpha of 0.83 which did not benefit from removal of any items.

Conclusions: The acceptable internal consistency score obtained verifies the validity and reliability of using the UL-MAS as an independent scale. This study has also verified the construct validity of the UL-MAS subscale and provides a valuable extension of previous work, which together demonstrates the value of the UL-MAS as a responsive, valid and reliable measure of upper limb function in adults following stroke. The UL-MAS produced a single, composite score that could be interpreted as a total score for upper limb function in this population.     

Agricultural workers' return to work following spinal cord injury: a comparison with other industry workers

Purpose: To investigate the impact of spinal cord injury on employment outcomes as experienced by agricultural workers in comparison with persons employed in other industries. Because of the challenges associated with working in many of the agricultural industries, it was anticipated that agricultural workers would achieve inferior return-to-work outcomes.

Method: Survey of all employed persons who experienced a traumatic spinal cord injury in southeastern Australia between 1990 and 1996 (inclusive).

Results: Contrary to expectation, agricultural workers had a significantly higher rate of return to work (61.7% vs. 41.1%). However, an investigation into the hours spent working and agricultural workers' satisfaction with their employment activities, indicated that most were underemployed and had the potential to achieve even better outcomes.

Conclusion: Results indicate that more can be done to help injured agricultural workers achieve their employment potential.