Perceived consequences of ageing with late effects of polio and strategies for managing daily life: a qualitative study.

BACKGROUND: New or increased impairments may develop several decades after an acute poliomyelitis infection. These new symptoms, commonly referred to as late effects of polio (LEoP), are characterised by muscular weakness and fatigue, generalised fatigue, pain at rest or during activities and cold intolerance. Growing older with LEoP may lead to increased activity limitations and participation restrictions, but there is limited knowledge of how these persons perceive the practical and psychological consequences of ageing with LEoP and what strategies they use in daily life. The aim of this qualitative study was therefore to explore how ageing people with LEoP perceive the their situation and what strategies they use for managing daily life. METHODS: Seven women and seven men (mean age 70 years) were interviewed. They all had a confirmed history of acute poliomyelitis and new impairments after a stable period of at least 15 years. Data were transcribed verbatim and analysed using systematic text condensation. RESULTS: The latent analysis resulted in three categories 'Various consequences of ageing with LEoP', 'Limitations in everyday activities and participation restrictions', and 'Strategies for managing daily life when ageing with LEoP' and 12 subcategories. The new impairments led to decreased physical and mental health. The participants perceived difficulties in performing everyday activities such as managing work, doing chores, partaking in recreational activities and participating in social events, thereby experiencing emotional and psychological distress. They managed to find strategies that mitigated their worries and upheld their self-confidence, for example finding practical solutions, making social comparisons, minimising, and avoidance. CONCLUSION: Ageing with LEoP affected daily life to a great extent. The participants experienced considerable impact of the new and increased impairments on their life situation. Consequently, their ability to participate in various social activities also became restricted. Social comparisons and practical solutions are strategies that facilitate adaptation and acceptance of the new situation due to LEoP. This emphasises the need to design rehabilitation interventions that focus on coping, empowerment and self-management for people ageing with LEoP.

Conceptualizing and prioritizing clinical trial outcomes from the perspectives of people with Parkinson's disease versus health care professionals: a concept mapping study.

BACKGROUND: Focusing clinical investigations on outcomes that are meaningful from an end-user perspective is central in clinical research, particularly in chronic disorders such as Parkinson's disease (PD). However, little is known about how end-users such as people with PD (PwPD) and health care professionals (HCPs) view and prioritize therapeutic outcomes. PURPOSE: To compare the perspectives of PwPD and HCPs regarding prioritized areas for outcome measurement in clinical PD trials. METHODS: Concept mapping was used to identify prioritized outcomes (statements) through focus groups (n = 27; 12 PwPD, 12 HCPs, three researchers), statement sorting and importance rating (n = 38; 19 PwPD, 19 HCPs), followed by quantitative (multidimensional scaling, cluster analysis, procrustes analysis) and qualitative analysis. RESULTS: Sorting of 99 statements by PwPD and HCPs yielded 2D maps (PwPD/HCPs stress values, 0.31/0.21) with eight clusters per group. The correlation between raw sorting data of PwPD and HCPs was 0.80, and there was a significant concordance (m 12 = 0.53; P < 0.001; i.e., r = 0.68) between the spatial arrangements in their respective maps. Qualitatively, the maps from the two groups represented partially different perspectives. There were no significant differences between PwPD and HCP item importance ratings. CONCLUSION: Although similarities dominated, there were differences in how the relationships between items were perceived by the two groups, emanating from different perspectives, i.e., the clinical biomedical ("disease") versus the lived experience ("illness"). This study illustrates the clinical importance of attention to the perspective of PwPD; taking this into account is likely to provide evidence from clinical investigations that are meaningful and interpretable for end-users.

"A feeling of being part of the future": a qualitative study on physical therapists' experiences of delivering digital first-line treatment for hip and knee osteoarthritis.

INTRODUCTION: Digital options for osteoarthritis (OA) treatment are increasingly available with high patient satisfaction and acceptability. Little is, however, known about physical therapists' (PT) perception of this treatment modality. OBJECTIVE: To investigate PT's experience of delivering digital treatment for hip and knee OA using a smart-phone application. METHOD: Nine PTs (mean age 36 years, women n = 5) with 3-24 months experience of delivering digital OA treatment were interviewed using a semi-structured interview guide. The interviews were transcribed verbatim and analyzed using content analysis. RESULTS: Four main categories arose; 1) A feeling of being part of the future, 2) Making an osteoarthritis diagnosis in a digital setting, 3) Facilitators and barriers of digital OA management and 4) Where to go from here? PTs were in general positive for digital treatment delivery but felt that a lack of visual assessments and physical examinations to enhance exercise evaluations and diagnosis accuracy was sometimes a disadvantage. CONCLUSION: Digital treatment delivery was in general perceived as a time-efficient way of providing high-quality care that may increase patient motivation and adherence without violating the therapeutic alliance. Future implementations of digital OA treatment programs should consider the possibility of including real-time video calls for visual assessment.

Experiences of People with Cardiovascular Disease during COVID-19 in Sweden: A Qualitative Study.

Although people with cardiovascular conditions were subjected to more rigorous restrictions during the COVID-19 pandemic, there is limited knowledge of how the restrictions affected their lives and well-being. Thus, the aim of this study was to describe how people with cardiovascular conditions experienced their life situation and physical and mental health during the second wave of the pandemic in Sweden. Fifteen participants (median age 69 years; nine women) were individually interviewed, and data were analyzed with systematic text condensation. The findings revealed that some of the participants were fearful of contracting COVID-19 as their medical condition made them vulnerable. Additionally, the restrictions changed their daily routines and their ability to take part in social activities, as well as their access to specialized outpatient care (medical check-ups and physiotherapy). Although emotional and psychological distress were present, several participants found strategies that reduced their worries, such as exercising and meeting friends outdoors. However, some had adopted a more sedentary lifestyle and unhealthy diets. These findings indicate that healthcare professionals should provide individualized support to persons with cardiovascular diseases in order to find well-functioning emotion- and problem-focused strategies aimed at improving physical and mental health during crises such as pandemics.

Measuring outcomes in Parkinson's disease: a multi-perspective concept mapping study.

PURPOSE: To identify and develop a conceptual map of prioritized areas and to determine their relative importance for outcome measurement in clinical Parkinson's disease (PD) trials, from the perspectives of health care professionals and people with PD. METHOD: We used concept mapping, a qualitative/quantitative method consisting of three steps: item generation through focus groups (n = 27; 12 people with PD, 12 health care professionals, 3 researchers), item sorting and rating (n = 38; 19 people with PD, 19 health care professionals), and data analysis (multidimensional scaling, cluster analysis). RESULTS: Ninety-nine items and eight clusters were generated. Clusters representing Participation; Mobility and motor functioning; Cognitive and executive functioning; and Emotions were the most homogenous. Statements within clusters representing Energy and abilities; Autonomic dysfunctions; Sensory, speech and swallowing problems; and Neuropsychiatric symptoms also related to statements outside their respective clusters. Clusters rated most important were Participation and Mobility and motor functioning, and the highest rated items were quality of life, walking ability, and sleeping problems. CONCLUSION: By the use of concept mapping, a multi-perspective conceptual map of prioritized aspects for the outcome measurement in PD was defined. These findings provide an initial conceptual basis toward improved outcome measurement priorities in clinical PD trials.

Identifying important conceptual areas in a nursing education programme to meet future demands, using group concept mapping.

A nursing programme in southern Sweden was revised to meet future demands. The aim of this study was to explore important conceptual areas to be included in a nursing programme in order to meet long-term societal and health care requirements. Group concept mapping (GCM), a mixed-methods approach, was used. Thirty-four experienced teachers participated. Data was collected during brainstorming sessions in focus groups. Following editing and removal of duplicates, 101 statements remained to be sorted into piles that had similar conceptual representation in nursing education. The final step was then to rate each statement from 1 to 5 (higher values = more important/more feasible). Quantitative analysis using non-metric multidimensional scaling and hierarchical cluster analysis resulted in 11 clusters. Assessment and treatment and Person-centred care were rated as the most important and Scientific theories and methods, Basic caregiving in nursing and Person-centred care had the highest feasibility ratings. Further analyses suggested that the content of nursing education can be seen from a systems theory perspective, represented by the macro, meso, and micro levels. These levels may increase the understanding of the complexity of nursing care. Furthermore, the cluster analysis can facilitate the development of a concept-based curriculum for nursing education.

Physiotherapists' experiences of the meaning of movement quality in autism: a descriptive phenomenological study.

Introduction: Movement quality, represented in unrestricted movements, flow and pleasure, is often lacking in people with autism. One aspect is the non-verbal expression of the present emotional and psychological state of an individual.Purpose: To describe the meaning of movement quality in autism, as experienced by specialized physiotherapists.Method: Ten physiotherapists were interviewed. The data were recorded, transcribed verbatim, and analyzed using Giorgiá¾½s descriptive phenomenological method.Findings: The general structure of movement quality in people with autism included eight key constituents: 1) reduced postural control; 2) deviant muscle tone and tension; 3) deviant sensory processing; 4) a lack of conscious awareness; 5) difficulties with body boundaries; 6) coordinating movements (including breathing); 7) lack of anticipatory preparations of movements; and 8) need of cognitive thoughts to control movements.Conclusions: This study provide an understanding of how movement quality in people with autism is expressed. Their lived bodies constantly need to protect themselves from sensory impressions from within or the surroundings, causing emotional distress and obscuring the meaning of their movements. Their bodily expression becomes restrained, fragmented, and hesitant. Understanding movement patterns and emotional reactions following their struggle with movements may facilitate constructive interaction and communication, which give important implications when designing physiotherapy interventions.

Growing up with a disability following paralytic poliomyelitis: experiences from persons with late effects of polio.

PURPOSE: To describe the experiences of growing up after acute paralytic poliomyelitis and strategies used to adapt to the new situation. METHODS: Seven women and seven men (mean age 70 years, min-max 61-78 years) with late effects of polio, who had contracted paralytic polio in their childhood. Data were collected using semi-structured interviews, transcribed verbatim, and analyzed by systematic text condensation. RESULTS: Memories of contracting acute paralytic poliomyelitis involved being immobilized and sent away from home for surgical and physiotherapeutic treatment. Growing up in a social context that was often tough and unfriendly resulted in the development of strategies, such as optimistic thinking, trying to blend in, trusting one's ability to manage, and to handle the preconceptions and expectations of others. At the onset of late effects of polio, some of these strategies were still functioning, whereas overachieving, disregarding pain, and weariness were not. CONCLUSION: The challenges of growing up with a disability following paralytic polio led to the development of various psychological strategies for managing daily life. By understanding these experiences and strategies, knowledge may be gained in assisting rehabilitation professionals to better support persons with late effects of polio in adapting to the new situation.Implications for rehabilitationAt the onset of late effects of polio, strategies developed earlier in life, such as overachieving, disregarding pain, and weariness, may not function anymore.Understanding the experiences of growing up with poliomyelitis can support rehabilitation professionals to provide targeted interventions for people with late effects of polio and enable them to develop new adaptive strategies.Developing new strategies, such as accepting increased symptoms, and augmenting self-esteem and self-efficacy, may improve daily functioning among people with late effects of polio.

The Impact of Living with Parkinson's Disease: Balancing within a Web of Needs and Demands.

This study explores the impact of living with Parkinson's disease (PD). Nineteen persons (11 women) aged 55-84 diagnosed with PD 3-27 years ago participated. Data were collected through semistructured interviews, which were recorded, transcribed verbatim, and analysed by qualitative content analysis. Four categories represented the impact of living with PD: "Changed prerequisites for managing day-to-day demands," "Loss of identity and dignity," "Compromised social participation," and "The use of practical and psychological strategies." There was a shift from an internal to an external locus of control in managing, control, competence, relatedness, and autonomy. According to self-determination theory, a shift towards extrinsically motivated behaviours may occur when these basic needs are thwarted, leading to compensatory strategies or needs substitutes with negative consequences on health and well-being. We suggest a needs-based approach as an important starting point to better understand the consequences of living with PD and to explore the means for people with PD to acquire an improved quality of life on their own terms. In conclusion, our findings suggest for a shift in focus, from a biomedical to a needs-based approach to understand the impact of living with PD and facilitate more person-centred care and person-centred outcome measurement.

Understanding one's body and movements from the perspective of young adults with autism: A mixed-methods study.

BACKGROUND: There are but a few studies of how persons with autism perceive their bodies and movements. Difficulties in perceiving the surrounding world along with disturbed motor coordination and executive functions may affect physical and psychological development. AIMS: To explore the experiences of body and movements in young adults with autism and how two physiotherapeutic instruments may capture these experiences. PROCEDURES: Eleven young adults (16-22 years) with autism were interviewed and assessed using Bruininks-Oseretsky Test of Motor Proficiency (BOT2) and Body Awareness Scale Movement Quality and Experience (BAS MQ-E). Following a mixed- methods design, the interviews were deductively analyzed and conceptually integrated to the results of the two assessments. RESULTS: Experiencing conflicting feelings about their bodies/movements, led to low understanding of themselves. The assessments captured these experiences relatively well, presenting both movement quality and quantity. Positive experiences and better movement quality related to having access to more functional daily strategies. CONCLUSION: Combining motor proficiency and body awareness assessments was optimal to understand the participants' experiences. IMPLICATIONS: To capture body and movement functions in persons with autism in this standardized manner will lead to improved and reliable diagnoses, tailored interventions, increased body awareness and activity, and enhanced quality of life.

Motor and non-motor predictors of illness-related distress in Parkinson's disease.

OBJECTIVE: To identify motor and non-motor symptoms independently associated with distress in Parkinson's disease (PD). METHOD: Clinical and patient-reported data from 118 people with PD (mean age and PD-duration, 64 and 8 years) were analyzed regarding associations with patient-reported distress using multiple regressions (controlling for age). RESULTS: Non-motor symptoms independently associated with distress were pain, fatigue, sleep, depression and anxiety (R(2), 0.81). The only significant motor aspect was mobility (R(2), 0.31). When considering both motor and non-motor symptoms, fatigue, pain, depression and sleep showed independent associations with distress (R(2), 0.76). CONCLUSION: Distress in PD is primarily associated with non-motor features.