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Purpose: The aim of this article is to conceptualise the phenomenon of therapy-related parental stress in parents of children with a physical disability.

Methods: Three models related to parental stress were reviewed, i.e., general parental stress, burden of caregiving in parents of children with physical disabilities, and experiences of these parents with their child’s therapy.

Results: The proposed definition of therapy-related parental stress is “the subjective stress and subsequent changes of functioning and health experienced by a parent of a child with a physical disability in response to paramedical therapies (i.e., physical, occupational, and/or speech and language therapy)”. A theoretical model is proposed to describe the process of therapy-related parental stress. Available questionnaires will most likely not be valid and responsive to capture the (changes in) stress parents experience related to therapy their child receives.

Conclusions: This article provides a first definition of therapy-related parental stress and a theoretical model to visualise the processes with regard to this topic. Empirical testing of the presented components and their coherence is needed to confirm or improve the model. A questionnaire that specifically measures the concept of therapy-related parental stress is needed, along with evaluating therapy-related parental stress in clinical practice and research.

Aim: To conduct a detailed investigation into changes in activity limitations and participation restrictions over 10 years in people with mild, moderate and severe multiple sclerosis.

Methods: This study was a 10-year longitudinal study of 264 people with multiple sclerosis living in Stockholm County, Sweden. Ten-year changes in personal and instrumental activities in daily living were assessed using the Katz Activities in Daily Living Index Extended and participation in social/lifestyle activities using the Frenchay Activities Index.

Results: While people with moderate multiple sclerosis, compared to baseline, demonstrated significantly higher proportions of dependency in most activities of personal and instrumental activities in daily living at the 10-year follow-up, the mild group primarily increased their dependency in instrumental activities and the severe group in personal activities. Significantly higher proportions of the moderate group showed restricted participation in domestic and outdoor activities whereas the mild group only showed restrictions in a few domains of participation. A majority of people with severe multiple sclerosis showed restricted participation in all social/lifestyle activities at baseline and the 10-year follow-up.

Conclusions: Prominent long-term increases in activity limitations and participation restrictions occurred across the spectrum of disease severity but was most pronounced in those more moderately affected.

Purpose: The purpose of this scoping review was to explore the literature on experiences and perspectives of patients with hip fractures and their caregivers during transitions in care.

Methods: Seven databases were searched for studies published between 1 January 2000 and 3 July 2018. Grey literature was also searched.

Results: Eleven articles met the inclusion criteria. The scoping review found that patients and caregivers encounter several challenges during care transitions including the following: lack of information sharing, role confusion and disorganized discharge planning. Common suggestions reported in the literature for improving care transitions were: increasing written communication, offering a patient representative role, using technology for knowledge dissemination and increasing geriatrician involvement.

Conclusions: The results of this scoping review provide a useful foundation from which to build strategies to address challenges such as lack of information sharing, role confusion and disorganized discharge planning experienced by patients and caregivers during care transitions. Further research needs to explore the development of strategies to promote patient-centered care especially during discharge from an acute care facility.

Purpose: Participation in activities of everyday life is seen as main goal of rehabilitation after a stroke and return to work is an important factor to consider for the substantial number of persons having a stroke at working age. The current study aims to investigate whether returning to work would predict self-perceived participation and autonomy in everyday life after a stroke, from a long-term perspective.

Materials and methods: Persons with first-ever stroke at age 18–63 years in 2009–2010, Gothenburg, were included. As 5-year follow-up, the Impact on Participation and Autonomy questionnaire was sent out, investigating self-perceived participation/autonomy in five levels, and work status was investigated from national sick-absence registers. Prediction of work on participation/autonomy was investigated with logistic regression.

Results: A total of 109 participants (49%) responded to the questionnaire. The majority (69–94%) perceived very good participation/autonomy in all domains and 59% were working 5 years after stroke. Working was a significant predictor of high participation/autonomy in all domains of the questionnaire.

Conclusions: Being able to return to work after a stroke seems to be important for self-perceived participation/autonomy. This emphasizes the importance of work-oriented information and rehabilitation after a stroke at working age.

Purpose: Little is known concerning the impact of chronic spasticity on physical activities, social participation, and well-being, and whether patients’ needs are addressed by current treatments. This study aims to investigate these lacunas in persons with a pure form of hereditary spastic paraplegia (HSP), in whom spasticity is a prominent symptom.

Methods: Fourteen patients with a pure form of HSP were interviewed. These interviews were recorded, verbally transcribed, and thematically analyzed.

Results: Four themes were identified which can be reflected by the phrases: (1) ‘I stumble’, (2) ‘I struggle’, (3) ‘I feel ashamed’, and (4) ‘I need support’. Balance and gait problems led to limitations in domestic activities, employment, and recreation. ‘Stumbling’ also occurred due to pain, stiffness, and fatigue. Struggling was related to the continuous need for adaptation strategies, including the abandonment of some activities. Participants further reported feelings of shame, fear, and frustration. Lastly, they needed more support in daily activities than currently provided.

Conclusion: Besides treating spasticity-related motor impairments, patients with HSP need practical support for optimizing their physical activities and social participation. They also seek attention for the non-motor consequences of their chronic spasticity to improve their well-being. Patient-reported outcomes might help to address these needs.

Purpose: To investigate outdoor mobility of immigrants in Sweden who are living with the late effects of polio.

Materials and methods: A total of 145 patients with late effects of polio born outside the Nordic region were identified at an outpatient polio clinic. Of these, 74 completed a questionnaire about their mobility and independence in daily life, self-perceived pain and depression, vocational status, mobility assistive devices/aids, transportation modes and driving. Patient characteristics were based on medical records supplied by physicians.

Results: Twice as many patients had lower extremities that were affected by polio than upper extremities. This affected their use of different transport modes and caused mobility and transfer problems. Indeed, 39% needed mobility aids and help from another person to move outdoors. Those who reported dependence for outdoor mobility were more often unemployed and more often depressed.

Conclusions: Many respondents reported having difficulties with transport mobility, but a large proportion, 57%, were independent and active drivers. It is important to consider outdoor mobility when planning rehabilitation for patients with late effects of polio and foreign backgrounds. In addition to psychosocial factors, dependence on mobility-related activities can lead to dependency and isolation.

Purpose: Patients with spinal muscular atrophy (SMA) suffer from slowly progressive weakness of axial, respiratory and proximal muscles, leading to restrictions in activity and participation. This study aims to investigate patients’ level of psychological well-being, using the International Classification of Functioning model and self-determination theory as theoretical frameworks.

Materials and methods: In this cross-sectional study, adults with SMA were invited to complete a questionnaire. Instruments to assess psychological well-being included the Satisfaction with Life Scale, the Rosenberg Self-Esteem Scale and the Positive and Negative Affect Scale. Hierarchical lineal regression analyses were performed to investigate the contribution of participation (International Classification of Functioning model) and satisfaction of the need for autonomy, competence and relatedness (self-determination theory) to well-being.

Results: Ninety-two respondents (67%) returned the questionnaire. Levels of psychological well-being were comparable to that of healthy reference samples. Well-being was unrelated to sociodemographic variables or illness characteristics. By contrast, well-being was closely related to respondents’ satisfaction with participation, and their sense of autonomy, competence and relatedness.

Conclusions: This study illustrates the relevance of psychological needs for understanding well-being of individuals with SMA. Supporting patients in meeting their psychological needs should become an objective of person-centred care for this population.

Purpose: To evaluate the access to human rights of persons with disabilities who use prosthetic and orthotic assistive devices, and to compare groups of participants in terms of gender, residential area, income, and type and level of assistive device. The addressed areas were rights to: health, a standard of living adequate for health, education, marry and establish a family, vote, and work.

Methods: Questionnaires were used to collect self-reported data from 139 lower-limb prosthetic and orthotic users in Sierra Leone.

Results: About half of the participants considered their overall physical health good, while 37% said their mental health was bad. Most said they lacked access to medical care. About half of the participants had regular access to safe drinking water. Most had reasonable housing and 60% could read and write. Half of the participants were married and 70% had children. Almost all reported that they could vote if desired and about half were working.

Conclusions: There is still a need for improved access to medical care when needed for persons with lower limb physical disability in Sierra Leone. Better access to food and clean water are also necessary to facilitate a standard of living adequate for health, to realize the health rights of persons with disabilities.

Background: The optimal management strategy for multiple sclerosis (MS), and many other chronic diseases, likely involves health behavior modification. Multimodal behavioral interventions may be most effective, but little is known about long-term adherence in people with MS.

Methods: This qualitative study assessed barriers and enablers to long-term adherence by people with MS who self-selected for a 5-day health behavior intervention 3–5 years prior. Thirteen women and five men participated in semi-structured phone interviews, which were transcribed and thematically analyzed.

Results: The experience was described as useful for information gathering, decision making, and practical strategies regarding health behaviors. The majority still followed supplementation and dietary recommendations most of the time, although consuming non-recommended food while eating out was common. Support at home, ability and enjoyment in food preparation, and ability to resist unhealthy foods were both barriers and enablers. Adherence to “time-consuming” exercise and meditation recommendations were less common and episodic. Many reported competing interests on time from work and family; and barriers including injuries and symptoms, weather, financial or geographical barriers, and lack of person-centred support and motivation. Increased fitness and mobility, weight loss, and a sense of accomplishment and control were advantages and motivators. Practical and attitudinal strategies employed included planning, tailoring activities to ability and preference, and self-monitoring.

Conclusion: While most people attempted to engage with all components of the intervention initially, only some still engaged with all components, and none to the recommended levels. These data can inform future quantitative studies and health behavior interventions.