Living with Muscular Dystrophy: Illness Experience,Activities of Daily Living,Coping, Quality of Life and Rehabilitation

The overall aim was to study and gain knowledge about what it means to live with muscular dystrophy and to study rehabilitation from the patient's perspective, among adults with muscular dystrophy in three Swedish counties: Örebro, Östergötland and Norrbotten. The thesis comprises two qualitative and three quantitative studies. Thirty interviews about illness experience were subjected to content analysis and 37 interviews about perceived support in rehabilitation were analysed according to phenomenological guidelines. Data were also collected by the Assessment of Problem-focused Coping (APC), the ADL Staircase, the Self-report ADL, the Mental Adjustment to Cancer Scale, the Sickness Impact Profile, the Psychosocial well-being questionnaire and the Quality of Life Profile. The APC was developed for assessment of problem-focused coping and also covers questions concerning the extent to which activities are experienced as problems and satisfaction with activities. The result shows that the experience of illness is largely similar in the three diagnostic groups (proximal MD, Myotonic muscular dystrophy, Myopathia distalis tarda hereditaria). The persons reported many restrictions of everyday activities, most often in mobility and transportation. Over half were dependent on other people in activities of daily living, and the illness was experienced mainly as having negative consequences for everyday life. A lower quality of life may be partly explained by a reduced capacity for activities. Problem-focused coping was used only to a limited extent, and 'fighting spirit' was the dominant coping strategy. Rehabilitation was experienced as very valuable, particularly the education about the muscle disease, technical aids, grants and physical training. Over a five-year period, disability and quality of life of the study participants deteriorated significantly, and the dependence on other people increased.     

Agreement Between Occupational Therapists and Clients with Stroke on Three Outcome Measures

In recent years, the occupational therapy profession has been under increased pressure to document the outcomes of interventions in order 10 improve the quality of client care and to provide evidence of the effectiveness and efficiency of services to recipients and sponsors. The literature to date has focused primarily on establishing therapy outcomes from a therapist perspective. However, attention must also be paid to the views of our consumers regarding the outcomes of therapy. The purpose of this study was to determine whether clients and therapists agree regarding client scores on three outcome measures. The study included 4 occupational therapists and 20 clients with stroke who rated clients' status in terms of personal activities of daily living, instrumental activities of daily living and quality of life, at admission of clients as well as discharge from rehabilitation. The results indicated that there was generally only moderate agreement between therapists' and clients' ratings at both admission and discharge. These findings suggest that therapists should continue to spend time exploring client status with their clients so that both parties have the best possible understanding of the clients' capabilities, and the outcome of therapy. The findings also suggest the need to administer client outcome assessments as well as to utilize client self-reports.     

Quality of life of mental health consumers in Hong Kong: Analysis of service perceptions

Objectives Successful psychiatric rehabilitation entails fostering overall quality of life of individuals recovering from severe mental illnesses. Understanding how service-related perceptions may be related to quality of life can be useful in improving the effectiveness of community-based care. This study investigated the quality of life of mental health consumers using a service-oriented paradigm. Methods 162 mental health consumers from community-based psychiatric rehabilitation centers were interviewed. Analyses were conducted to investigate the relationships between service perceptions (perceived treatment coercion, rehabilitation needs, and continuity of care) and quality of life. Results Physical health quality was negatively related to rehabilitation needs. Mental health quality was negatively related to both rehabilitation needs and poorer continuity of service. Life satisfaction was negatively related to poorer continuity of service and higher perceived treatment coercion. Conclusions This study highlighted the significance of service perceptions in the well-being of individuals with severe mental illness.     

Utility of the Canadian Occupational Performance Measure as an admission and outcome measure in interdisciplinary community-based geriatric rehabilitation

Abstract

In a community-based geriatric rehabilitation project, the Canadian Occupational Performance Measure (COPM) was used to develop a coordinated, interdisciplinary, and client-centred approach focusing on occupational performance. The purpose of this study was to evaluate the utility of the COPM as an admission and outcome measure in an interdisciplinary geriatric rehabilitation context in Denmark. Eighteen occupational and physiotherapists administered the COPM among elderly citizens. Of 185 citizens referred to the study, 152 were admitted to rehabilitation based on health indices, and 124 completed the COPM after their admission, identifying 404 occupational performance issues in all. Post-assessment data were obtained from 95 participants and revealed statistically significant positive change (p < 0.001) in both performance and satisfaction with performance. Furthermore the therapists answered a questionnaire evaluating their experiences, showing that they found development in knowledge and community between the professions to benefit both therapists and citizens, and gained a better insight into their clients' everyday lives through the COPM. In conclusion, the COPM may be useful as an admission and outcome measurement for the rehabilitation of elderly citizens; however, aspects of education and administration must be considered before the instrument can be successfully administered in an interdisciplinary geriatric rehabilitation context.     

Individualised home‐based rehabilitation after stroke in eastern Finland – the client's perspective

Reintegration into society is one of the main purposes of post‐stroke rehabilitation. The experiences of clients returning home after a stroke have been studied before. There is, however, little knowledge about activities carried out during home‐based rehabilitation interventions and about the involvement of clients in the process. This study focused on clients' experiences of a 3‐month individualised, home‐based rehabilitation programme supervised by a multidisciplinary team. The data were collected in 2009–2010, and it was based on interviews with 14 clients (48–83 years of age) conducted approximately 7 months after stroke. In the thematic analysis, five main topics describing the goals and functions of the home‐based rehabilitation were identified as follows: (i) learning strategies for solving problems in daily activities at home and in the community; (ii) receiving exercise coaching; (iii) exploring community services and facilities; (iv) having a dialogue with professionals; and (v) engaging in activities aimed at returning to work. Implementing rehabilitation activities in the home environment seemed to enhance the participants' active involvement and their ability to evaluate themselves and to set goals for their recovery. Work was an important goal for clients of working age, but work‐related tasks were not sufficiently integrated with home‐based rehabilitation. A challenge for local communities is to provide health promotion and recreation services that are also suitable for persons with limited functioning.     

Ability in daily activities after early supported discharge models of stroke rehabilitation

More knowledge is needed about how different rehabilitation models in the municipality influence stroke survivors’ ability in activities of daily living (ADL). Objectives: To compare three models of outpatient rehabilitation; early supported discharge (ESD) in a day unit, ESD at home and traditional treatment in the municipality (control group), regarding change in ADL ability during the first three months after stroke. Methods: A group comparison study was designed within a randomized controlled trial. Included participants were tested with the Assessment of Motor and Process Skills (AMPS) at baseline and discharged directly home. Primary and secondary outcomes were the AMPS and the modified Rankin Scale (mRS). Results and conclusions: Included were 154 participants (57% men, median age 73 years), and 103 participants completed the study. There were no significant group differences in pre–post changed ADL ability measured by the AMPS. To find the best rehabilitation model to improve the quality of stroke survivors’ motor and process skills needs further research. Patients participating in the ESD rehabilitation models were, compared with traditional treatment, significantly associated with improved ADL ability measured by the mRS when controlling for confounding factors, indicating that patients with social needs and physical impairment after stroke may benefit from ESD rehabilitation models.     

Improving quality of ADL performance after rehabilitation among people with acquired brain injury

The aim of this study was to evaluate whether people with brain injury show improvements in quality of performance of activities of daily living (ADL) after rehabilitation. A retrospective pre- and post-test design with no control group was used. Subjects received interdisciplinary rehabilitation consisting of restorative and compensatory strategies. Thirty-six adults with moderate to severe disability following acquired brain injury were evaluated using the Assessment of Motor and Process Skills (AMPS), an observational evaluation of the quality of ADL task performance. Paired t-tests revealed significant increase in ADL ability after intervention; effect sizes were medium. Improvements occurred across ages, within all diagnostic groups, and with no relation to time post-injury. It was concluded that people with moderate to severe disability following acquired brain injury improved in ADL ability after participating in an intensive, interdisciplinary rehabilitation programme. Although lack of a control group prevented a conclusively conclusion that the changes were due to the intervention provided, the fact that the subjects had shown slow spontaneous recovery and minimal improvements before the study was implemented supports the likelihood that their gains were largely the result of the intervention.     

College-Student Client and Novice Therapist Perceptions of Each Other at Intake

The study examined college-student clients' and beginning therapists' perceptions of each other at intake. The therapists were 6 psychotherapy practicum graduate students (5 women, 1 man) and their 133 college student clients (77 women, 56 men) who sought help for the first time at a university counseling center. After the initiative session, clients rated therapists on the Counselor Rating Form-Short Version and therapists rated clients on the Therapist Personal Reaction Questionnaire. Therapists feelings that they did a good job during the interview were positively related to clients' rating the therapists as expert. If therapists disagreed with their clients on some basic matters and viewed the clients as needing help, they were rated by their clients as expert. The results emphasize the importance of training beginning therapists to identify the concerns or their clients.     

Disability in Daily Life Activities and Visual Impairment: A population study of 85-year-old people living at home

Within the framework of the gerontological and geriatric population studies in Göteborg, Sweden, H70, 617 85-year-old people were studied in a cross-sectional study. The purpose was to describe disability in activities of daily living (ADL) and how it is related to visual impairment, focusing on age-related macular degeneration (AMD). People with visual impairment, especially those with AMD, were found to be more dependent on help in both personal activities of daily living and instrumental activities of daily living compared with elderly persons with normal vision. The proportion of participants with disability in ADL and the relative risk of developing ADL dependence increased with the decrease in visual acuity (VA). However, the relationship between ADL and VA was weak, implying that people adapt to the consequences of the disease, although to different degrees. The results indicate that early detection and intervention might be essential to improve the odds for successful rehabilitation.     

Foodservice satisfaction domains in geriatrics,rehabilitation and aged care

Objective  

To develop a foodservice satisfaction instrument for residential aged care and geriatric/rehabilitation units. The quality of care and food provided for clients in long-term care facilities is critical for the prevention of malnutrition.     

Symptoms,functioning and quality of life after treatment in a residential sub‐acute mental health service in Australia

The aim of this study was to assess clients' and service providers' perspectives on changes in mental health after an admission to a residential recovery‐focused, sub‐acute service, in Australia. Clients were either step‐up clients, entering the service directly from the community, or step‐down clients who were transitioning from an inpatient unit to home. During the 30‐month period of data collection (August 2011 to January 2014) all clients (N = 102) were invited to participate in the longitudinal study and 41 clients consented to be involved (38% response rate). At admission and exit, participants completed the Behaviour and Symptom Identification Scale (Basis‐32) and service providers completed the Life Skills Profile‐16 and Health of the Nations Outcome Scales. Follow‐up data 3 months after exit were available for 12 clients, including the Basis‐32 and a self‐report measure of quality of life (Assessment of Quality of Life 8‐dimension). Both client groups reported positive improvements between admission and exit in the areas of relation to self and others, psychosis, daily living and presence of depression or anxiety symptoms. Service providers reported gains for clients in the areas of self‐care, level of symptoms and presence of social problems. At 3 months, clients generally reported positive quality of life, although there was no significant change in symptoms and functioning. This study demonstrates that after an admission to a sub‐acute service, step‐up clients experience an improvement in their symptoms and functioning, have avoided a hospital admission and are well enough to return home. Step‐down clients also experience further improvements in their symptoms and functioning, indicating that the service has assisted them in their transition to independent living after a hospital admission. Sub‐acute residential units provide a continuation of care for inpatients preparing to return home, and people with a mental health problem living in the community who experience an escalation in symptoms and prefer an alternative to hospital.     

Muslim Middle Eastern clients' reflections on their relationship with their occupational therapists in mental health care

Abstract

Persons with a Middle Eastern background represent a minority in Sweden which has significantly increased in size over recent years. The purpose of the present study was to explore the elements that shape the experiences and perceptions of clients with a Middle Eastern background living by Muslim norms who received occupational therapy in mental health care at the time of participating in the study. The study included interviews with 11 clients who received occupational therapy in mental health care. Data collection and analysis were carried out in accordance with the grounded theory approach. One core category, desiring a union, described the clients' desire for an alliance with the therapists that encompassed the realities and truths embedded in their values, preferences, world-views, and belief systems, as well as a wish to reconstruct their abilities to function and perform daily life tasks within their cultural contexts. The core category included sub-categories: desiring relationship, desiring affiliation, and desiring affirmation as well as some related components. The overall findings showed a tentative model in which the notion of mahram affinity was embedded. The results demonstrated that the clients' views regarding desiring a union had their support in collectivistic world-views that often clash with those of the therapists.     

Living with epilepsy: Safety during home, leisure and work activities

Although there is a large literature concerning epilepsy and issues such as quality of life, driving, and knowledge and perceptions about epilepsy, there are very few articles that examine client knowledge and implementation of practical ways to minimize the risk of seizure-related injuries during daily living activities (ADL). Using a health promotion framework, the purpose of this study was to examine clients' understanding of their epilepsy, the kinds of accidents they experienced and their knowledge and practices concerning safety during ADL. A questionnaire was completed by 82 people with epilepsy from across the state of Victoria. It was found that respondents' knowledge of seizure-related injury minimization strategies was quite limited, and many respondents reported accidents during ADL, including driving. The majority of respondents requested more information to improve their safety during ADL if they experienced a seizure. The findings indicate that therapists may need to spend more time with their clients who have epilepsy in exploring strategies that promote health and minimize seizure-related accidents during ADL. Occupational therapists may choose to use the ADL safety brochure developed in response to this research to assist with client education.     

Effects of Geriatric Team Rehabilitation After Hip Fracture: Meta-Analysis of Randomized Controlled Trials

Objective

Systematic rehabilitation by geriatric interdisciplinary teams has been associated with favorable outcomes in frail older patients. The aim of the present meta-analysis was to evaluate the effects of interdisciplinary geriatric team rehabilitation in older patients with hip fracture.

Ethnic Clients in Diversional Therapy Programmes

A questionnaire survey of diversional therapists was conducted to examine their experiences with ethnic clients in diversional therapy programmes. The average therapist worked with the frail aged in a nursing home and had four ethnic clients, only one of whom spoke fluent English. Therapists experienced problems in communicating with clients and accommodating their needs. Ratings of ethnic clients' reactions to diversional therapy programmes indicated that they participated in and enjoyed 29 of 32 activities less than did other clients. While many therapists had introduced special activities and innovations, a tendency to deny the existence of ethnic clients' special needs could impede the development of ethnically sensitive diversional therapy programmes.     

Quality of life in Swedish workers exposed to hand-arm vibration

The objective of the present study was to analyse whether differences existed among workers exposed to hand-arm vibration (HAV) with regard to quality of life (QoL) issues. One hundred and eight male workers from a heavy manufacturing plant, with and without HAV symptoms, and workers referred to a hand surgery department with severe HAV symptoms participated in the study. The participants attended a clinical interview, were given a physical examination of the hands and administered the G?teborg Quality of Life instrument and the Evaluation of Daily Activity Questionnaire (EDAQ). Results indicated that workers referred to a hand surgery department with more severe HAV symptoms described a lower quality of life, defined here as lower subjective well-being, more symptoms of ill-health and difficulties with activities of daily living (ADL), than workers with no HAV symptoms. Workers from a heavy manufacturing plant with HAV symptoms experienced more difficulties with ADL, especially while working outdoors in cold weather, than workers with no HAV symptoms. Limitations of the present study include the use of a subjective scale to describe HAV symptoms. Further research is recommended on a larger sample of workers at risk for HAV symptoms to develop preventative ergonomic strategies.     

Psychological Culture, Physical Health, and Subjective Well-being

This article investigates the role of psychological culture in influencing health by examining the relationship between cultural discrepancies and physical health and subjective well-being. Participants completed a large battery of tests assessing their individual, psychological culture; perceptions of the larger, ecological culture; coping strategies; emotion and mood states; physical health and subjective well-being. Cultural discrepancies were operationalized as the difference between ratings of psychological and ecological culture. Regression analyses indicated that cultural discrepancies were associated with greater coping strategy usage which, in turn, was associated with anxiety and depression. These emotions were then predictive of both physical health and psychological well-being. These findings suggest that this approach is promising, and may open the door to other studies that operationalize culture on the individual level, forcing us to consider psychological culture and cultural discrepancies in our theoretical models of culture and health.     

Validity of the Canadian occupational performance measure

The Canadian Occupational Performance Measure (COPM) is used to assess clients' perceived performance of daily activities and their satisfaction with their performance. This study gathered evidence on the content-related and criterion-related validity of the instrument. Thirty-nine adult clients with orthopaedic and stroke disabilities were assessed using the COPM as well as three criterion instruments. Nine individuals with expertise in clinical and measurement participated in a panel review to evaluate the test content of the COPM. Results suggested that the assessment content and processes reflected clients' occupational performance issues. Criterion-related validity between the COPM and Functional Independence Measure was (r=?0.14 to 0.38), and with the Satisfaction with Performance Scaled Questionnaire was (r=?0.13 to 0.40). Evidence gathered indicated the importance of vigorously testing the appropriateness and meaningfulness of this clinical outcome measure. Further research should be directed at improving the standardization and clinical application of the COPM. Copyright © 1997 Whurr Publishers Ltd.     

Nutrition Support Team Intervention Improves Activities of Daily Living in Older Patients Undergoing In-Patient Rehabilitation in Japan: A Retrospective Cohort Study

The effect of nutrition support on activities of daily living (ADL) in individuals aged ≥75 years requiring rehabilitation is unknown. This study aimed to investigate the effect of nutrition support on ADL improvement in older patients undergoing in-patient rehabilitation in Japan. This retrospective cohort study was performed in 175 patients aged ≥75 years. The nutrition support team (NST) intervened in 85 cases. ADL was evaluated by the functional independence measure (FIM). We analyzed the effects of NST intervention on FIM efficiency. Multiple linear regression analysis revealed that NST intervention (standard partial regression coefficient, β?=?0.164; 95% confidence interval [CI] 0.003–0.229; P?=?0.044), energy intake at admission (β?=?0.179; 95% CI, 0.000–0.016; P?=?0.043), body mass index (BMI) at admission (β?=?0.227; 95% CI, 0.005–0.046; P?=?0.014), and cerebrovascular disease (β?=??0.238; 95% CI, ?0.298 to ?0.063; P?=?0.003) were independently associated with FIM efficiency. NST intervention, energy intake, and BMI on admission may affect ADL improvement in older patients undergoing in-patient rehabilitation.     

Exploring the association between quality of homecare services and older adults’ well-being

ABSTRACT

Homecare services play an important role in enabling older adults with chronic illness or functional impairment to continue living in their homes and communities. Previous research on homecare services has not fully explored the potential psychological benefits of homecare services. This study investigates the association between quality of homecare services and psychological well-being by analyzing two surveys. The results showed that the association between well-being and the quality of homecare services was mediated by satisfaction with health (z = 4.36, p = .000), satisfaction with family life (z = 4.96, p = .000) and satisfaction with friendship (z = 3.56, p = .000). The top three most important life domains, health, family life, and friendships, combined fully mediated the association between well-being and the quality of homecare services. These findings suggest that quality homecare services could enhance clients’ well-being in the areas of family life and friendships beyond health.