Adolescents with congenital limb reduction deficiency: Perceptions of treatment during childhood and its meaning for their current and future situation.

BACKGROUND: Children with congenital limb reduction deficiency live with the decisions made by their parents and healthcare professionals about treatments to be carried out during the first years of life. To understand better the meaning of treatment during childhood, it is necessary to listen to adolescents who have had this experience. The aim of this study was to investigate the perceptions of adolescents with congenital limb reduction deficiency concerning the treatment they received during childhood and what it meant to them currently and in the future. METHODS: A descriptive design with a qualitative approach was used. Semi-structured interviews were conducted with 10 adolescents (six girls and four boys) with upper and/or lower limb reduction deficiency, median age 17.5 years (range 16-19). The interview data were analysed using a phenomenographic approach. RESULTS: The treatment received during childhood had contributed to shaping the adolescents, as shown in the emerging description categories Creating opportunities, Choosing one's own path and Belonging in a context. Their current situation fell into three categories: A continuous journey, indicating that they still used the skills learned during childhood; Leaving the door open, indicating that they were not currently using the skills learned during childhood, but felt that there could be opportunities ahead; and Closing a chapter, indicating that they had stopped using their prosthesis or assistive devices and no longer needed those skills. Further, the adolescents' thoughts about the future are portrayed in the categories Uncertainty about the future and Confidence about the future. CONCLUSIONS: An understanding of the meaning of treatment received during childhood may help improve the delivery of treatment and continued support to meet the needs of children with congenital limb reduction deficiency in the short and long term.

Everyday activities at home: Experiences of older repeatedly readmitted people.

INTRODUCTION: Limitations in everyday activities are a risk factor for hospital readmission. Despite this, few studies have focussed on everyday activities of repeatedly readmitted older people. The experiences and specific needs of this group have been poorly described regarding their everyday activities at home. A deeper understanding may help occupational therapists and other health professions to facilitate readiness for this group at and after discharge. The aim of this study was, therefore, to describe the experiences of performing everyday activities of older people repeatedly readmitted to hospital and discharged to home. METHODS: A qualitative interview study was used to collect data from sixteen participants (75 years and older). Data were analysed using qualitative content analysis. RESULTS: One theme 'trying to manage an unpredictable everyday life' and two categories describe experiences of everyday activities at home. The participants expressed the importance of continuing everyday activities after discharge where support from relatives and healthcare seemed to be of importance. CONCLUSION: It was found that performance of everyday activities and contact with family members were of importance in their everyday life. Therefore, assessments and support were of particular importance for the group of older people who do not have close social relations at home.

The value of powered mobility scooters from the perspective of elderly spouses of the users - a qualitative study.

PURPOSE: To explore spouses' experiences of the value of mobility scooters prescribed to their partner. MATERIAL AND METHODS: A descriptive design with a qualitative approach was used. Thirteen spouses (11 females) aged 65-86 years participated. Semi-structured interviews were conducted when the spouse's partner had had the mobility scooter for 4-6 months. The interviews were analysed using qualitative content analysis. RESULTS: The interviews showed primarily that the spouses experienced that their everyday lives and life situation had improved since their partner had received a mobility scooter. They reported that they could engage in activities of their own choice to a greater extent. The prescription of a mobility scooter to their partner had also yielded a sense of freedom related to shared activities. On the other hand, the spouses described some of the scooter's limitations. Three categories emerged: a sense of freedom related to the spouse's own activities, a sense of freedom related to shared activities and a somewhat restricted freedom. CONCLUSION: Prescription of a powered mobility scooter was of value to the users' spouses because it facilitated independent and shared activities and participation in the community. The value was mainly expressed as a sense of freedom when doing things on their own or together with their partner. Spouses are key persons in the rehabilitation of people with mobility restrictions. Their views on the assistive device may influence the rehabilitation process. Knowledge of spouses' experiences is thus crucial, as this may influence the future rehabilitation outcome.IMPLICATIONS FOR REHABILITATIONA powered mobility scooter prescribed to one partner eases everyday life and increases activity and participation for the spouse, which in turn may further improve the quality of life for the scooter user.The spouses' perspectives on their partners' mobility scooter use could be helpful in developing the design of the mobility device and in the prescription process.A mobility scooter has an added value by giving a sense of freedom and freedom to choose for the spouse as well as the scooter user.

Swedish parents' experiences of their role in treatment for children with congenital limb reduction deficiency: Decision-making and treatment support.

BACKGROUND: Parents of children with congenital limb reduction deficiency have an essential role in making treatment decisions during their child's first years of life. Treatment options usually concern surgical and/or prosthetic treatment. To tailor treatment options to fit different family values and priorities, the family-centred approach indicates the importance of understanding the parental role in partnership with health care professionals. The aim of this study was to describe parents' experiences of their role in decision-making and treatment for children with congenital limb reduction deficiency. METHODS: A descriptive design with a qualitative approach was used. Semi-structured interviews were conducted with 17 parents (12 mothers and 5 fathers) of children with upper and/or lower limb deficiency (mean age 5.9 years). The interview data were analysed using qualitative content analysis with an inductive approach. RESULTS: Two major themes emerged from the data. The first theme, being a decision maker for someone else, was described as an ambivalent parental role, including collaboration within the family and with health care professionals. The second theme, becoming and being a treatment supporter in the child's everyday life, was made up of four categories: being a supporter of the child in everyday activities, mentoring the child to handle encounters with others, becoming a coordinator of information and being an 'extended arm' of the health care provision for the child. CONCLUSIONS: This study enhances our understanding of the parental role in decision-making and treatment for children with congenital limb reduction deficiency. The results may contribute to the continued development of the family-centred service approach by providing guidelines for treatment programmes, with the goal of improving decision support and broadening the support for parents during treatment for these children.

Cost-effectiveness of powered mobility devices for elderly people with disability.

PURPOSE: The aim of this study was to analyse the cost-effectiveness of prescribing powered mobility devices (PMDs) to elderly users. METHODS: Forty-five persons participated in the pre- and post-intervention study with a follow-up at four months. All participants were prescribed a scooter model and were offered individual support to get started using the PMD. In the analysis, the use of the PMD was compared to the situation prior to its use. The cost-utility analysis takes a societal perspective and considers costs, savings and quality of life (QoL) using answers to the EQ-5D questionnaire. RESULTS: Costs for the first year with the PMD were 1395 USD and then 592 USD per subsequent year. There was a significant decrease in transportation costs and in relatives' time use, but the increase in QoL of 0.041 was not significant. Costs per gained quality adjusted life year (QALY) were 12 400-14 700 USD/QALY if the value of time saved not was considered and 600-2900 USD/QALY when an hour was valued at 3.6 USD. CONCLUSION: Prescription of PMDs to elderly users might be cost-effective. However, there are shortcomings in measuring QALY gains from the use of a PMD, and it is unclear how time savings among relatives should be valued. Implications for Rehabilitation Prescription of powered mobility devices for the elderly with disability seems to be cost effective and should be a standard intervention. In economic evaluations of powered mobility devices and other assistive devices, the commonly used analyses methods are not always appropriate and therefore need to be adjusted.

Older people readmitted to hospital for acute medical care - Implications for occupational therapy.

OBJECTIVE: To compare ADL, cognitive function, risk of pressure sores, malnutrition and falls in older people readmitted to hospital. METHODS: This was a comparative study. Persons ≥ 75 years, who were readmitted to hospital, were assessed using the ADL-taxonomy and the Mini Mental State Examination. Risks of pressure sores, malnutrition and falls were assessed using Risk Assessment Pressure Sores, Short-Form Mini Nutritional Assessment and Downton Fall Risk Index. Data for comparison for ADL were obtained from an earlier study and risk assessments from a national quality register. RESULTS: Sixty persons were included whose median age was 84 years. The patients had a median of four diagnoses. The mean hospital stay was five days. Most patients were independent in food intake. There was a high degree of dependency in other ADL activities. Nineteen out of 48 patients had 24 point or lower in MMSE. Compared to an age-matched sample, these patients showed a higher risk of pressure sores, risk of falls and dependency in ADL. CONCLUSION: There is of importance to assess ADL, cognition, risk of falls and pressure sores to determine the needs of older people who are admitted to hospitals. Such assessments, and necessary interventions taken, may prevent unnecessary readmissions.

The effect of powered scooters on activity, participation and quality of life in elderly users.

PURPOSE: The aim was to explore the effect of using a powered mobility device (PMD) on older peoples' activity, participation and quality of life (QoL). METHOD: A pre- and post-intervention design with outcome measures for activity, participation (Individually Prioritized Problem Assessment, IPPA; World Health Organization Disability Assessment Schedule, WHODAS 2.0) and QoL (SF-36) were used. T-test was used to analyse the data. The magnitude of the effects was measured by Cohen's criteria for effect sizes (d). RESULTS: The sample consisted of 45 individuals (36 men) aged 66-88 years referred for prescription of a PMD. All were prescribed a powered scooter (PS). A statistically significant improvement with a large effect on IPPA in the ICF domains of Self-care (d = 2.47), Domestic life (d = 2.40), Interpersonal interactions and relationships (d = 2.08), and Community, social, and civic life (d = 2.36) was found. Medium-sized improvement on the WHODAS 2.0 domain of Participation and small improvements in the SF-36 domains of Physical Health and Role-Physical were also found. CONCLUSION: A PS has significant effects on the areas of activity, participation and QoL in elderly people. These findings have implications for prescriptions of a PS to this population. Implications for Rehabilitation Powered scooter interventions increased the performance of activities and increased participation in elderly people with mobility limitations. Actions from several parts of the community are required to prevent from mishaps from using powered scooters. The Individually Prioritized Problem Assessment is an adequate method to measure goal attainment in elderly users of powered scooters.

Making Each Other's Daily Life: Nurse Assistants' Experiences and Knowledge on Developing a Meaningful Daily Life in Nursing Homes.

BACKGROUND: In a larger action research project, guidelines were generated for how a meaningful daily life could be developed for older persons. In this study, we focused on the nurse assistants' (NAs) perspectives, as their knowledge is essential for a well-functioning team and quality of care. The aim was to learn from NAs' experiences and knowledge about how to develop a meaningful daily life for older persons in nursing homes and the meaning NAs ascribe to their work. METHODS: The project is based on Participatory and Appreciative Action and Reflection. Data were generated through interviews, participating observations and informal conversations with 27 NAs working in nursing homes in Sweden, and a thematic analysis was used. RESULT: NAs developed a meaningful daily life by sensing and finding the "right" way of being (Theme 1). They sense and read the older person in order to judge how the person was feeling (Theme 2). They adapt to the older person (Theme 3) and share their daily life (Theme 4). NAs use emotional involvement to develop a meaningful daily life for the older person and meaning in their own work (Theme 5), ultimately making each other's daily lives meaningful. CONCLUSION: IT WAS OBVIOUS THAT NAS BASED THE DEVELOPMENT OF A MEANINGFUL DAILY LIFE ON DIFFERENT FORMS OF KNOWLEDGE: the oreticaland practical knowledge, and practical wisdom, all of which are intertwined. These results could be used within the team to constitute a meaningful daily life for older persons in nursing homes.

Life situation of adults with congenital limb reduction deficiency in Sweden.

PURPOSE: To describe the current life situation of adults with congenital limb reduction deficiencies (CLRD), living in Sweden, regarding their main daily occupation, leisure activities and self-reported general health. METHODS: A cross-sectional survey was conducted using a study-specific questionnaire, sent by post. Hundred and seventeen persons with different extent, forms and levels of CLRD (mean age 33 years) responded to the questionnaire. RESULTS: Work or study was the main occupation for 86% of the participants and 50% had completed a college or university education. About 7% were unemployed and 3% were on sick leave. The participants were highly involved in social and physical activities during leisure time. The majority reported good or very good general health. CONCLUSION: This study is the first investigation of the life situation of adults with CLRD described with a perspective from Swedish society. The participants were educated and worked to a great extent, which corresponds well to the Swedish population as a whole. Further research is needed, especially with a focus on the internal perspective of life situation, different aspects of work capacity, occurences of strain injuries and the benefit of assistive devices among adults with CLRD. Implications for Rehabilitation People with CLRD require a health care system with a multi-professional rehabilitation team offering regular contact during their life time. Educational system offering study counselling on all education levels (from primary school to university) is an important type of support for people with any kind of deficiency, in order to find suitable education and profession. Work is of importance for an acceptable life situation. Rehabilitation for people with CLRD should emphasise facilitating their ability to work, through engagement in individual personal capacity and self-efficacy. The majority of people with CLRD are users of prostheses and assistive devices. The benefits of the devices are basic but the rehabilitation should also include aspects of usability and use worthiness for individuals in performing their daily activities.

Elderly persons with disabilities in Sweden: their experiences of everyday life.

The aim of this study was to describe the everyday life experiences of 22 elderly persons with physical disabilities in Sweden. The participants were aged between 65 and 91 years. Interviews were conducted and analysed according to a qualitative research approach. Disengagement in activities and social contacts resulted in feelings of resignation and dejection for some participants, while others delegated tasks as a satisfactory alternative. Participants also described how activities and social contacts continued, albeit in a different way, and being active and socializing gave feelings of pleasure and a sense of belonging. While receiving help was experienced as valuable, it also increased the fear of becoming dependent. Occupational therapy intervention should be directed at increasing social contacts and engagements in meaningful activities, as well as strengthening the individual's autonomy. The transferability of the study can be questioned as the sample only included elderly persons with physical disabilities from urban areas. Further research is needed to address the impact of occupational therapy interventions on life satisfaction.

Elderly persons' expectations of day-care rehabilitation.

The aim of this study was to explore elderly persons' conceptions of what they expected to gain from attending day-care rehabilitation centres (DCR). A purposeful sampling procedure was employed. Interviews with 22 prospective elderly day-care patients were carried out and analysed according to a phenomenographic approach. The analysis yielded eight categories. Two categories, Social contact and Exercise, described what the elderly persons expected to encounter. The remaining categories, A change from the monotony of everyday life, An opportunity to be yourself, A balm for the body, A safety net, A mastery of everyday activities, and An energizing spark, described the meanings of the encounters. Two categories were attributed to the elderly persons' physical presence at the centre and the gains were expected to end when the programme ended. In three categories the expected improvements were projected into the future and were expected to last. The findings imply that follow-up home visits and suggestions for alternative social activities in order to provide stimulation and social equality would be a valuable complement to the DCR programme. Rehabilitation personnel need to consider the ambivalent view on assistive devices as well as the elderly person's need for continuity when setting goals and planning individual programmes.