Participation In Everyday Life Research Articles

Exploring Co-Production in Residences with Special Services for Children and Adolescents with Intellectual Disability in Sweden

In Sweden, children and adolescents with intellectual disability in special residences often have complex support needs. In this study, co-production refers to when and how staff in special residences and children and adolescents living there interact to promote support that enhances their participation in everyday life according to their desires and needs. The study explores staff experiences of the conditions for co-producing individual support at special residences for children and adolescents with intellectual disability. Qualitative content analysis was used to analyze focus group interviews with residential staff. The analysis identified three generic categories: establishment of a structured context, continuous individual support development, and influencing factors for co-production. A key finding derived from the generic categories was that the conditions for co-produced support are impeded by communication barriers between staff and children/adolescents. Practical implications and future research are discussed.

A Qualitative Study of Cancer Survivors' Experienced Outcomes of a Multidimensional Rehabilitation Program in Primary Healthcare.

Cancer survival rates are increasing, but survival is often followed by several late effects. Cancer survivors' need for complex rehabilitation is well documented, but this is mostly missing in primary healthcare. The aim of this study was to explore cancer survivors' experienced outcomes of a multidimensional rehabilitation program in primary healthcare. The study used a qualitative method with a descriptive research design. Fifty-six cancer survivors completed a 12-week rehabilitation program built upon the 5 elements of goal setting, physical exercise, psychoeducation, individual follow-up, and peer support. Data were collected at the end of the program via 8 focus group interviews, and systematic text condensation was used to analyze the data. "Increased coping and participation" was identified as the overarching theme of the participants' experienced outcomes from the program, and this was elaborated by 3 main themes: (1) "increased energy and capacity," (2) "acceptance and understanding," and (3) "structure and hope." The multidimensional rehabilitation program seemed to address cancer survivors' multiple challenges in survivorship. Proximity and accessibility to a local rehabilitation program and professionals' competence seemed to be essential factors for the participants' experienced outcomes of the program. A multidimensional rehabilitation program integrated in a Healthy Life Centre in primary healthcare may be beneficial for cancer survivors' coping and participation in everyday life. Cancer nurses play a crucial role in initiating and facilitating such programs.

A qualitative study examining prosthesis use in everyday life in individuals with lower limb amputations

Lower limb amputation (LLA) is a life-changing event that affects functional mobility and participation in everyday life. Prostheses provide individuals with LLA the opportunity to improve mobility and quality of life; however, existing literature suggests that there is underuse of prostheses. The purpose of this study is to describe how individuals with major LLA use their prosthesis in everyday life and describe barriers and facilitators that influence prosthesis use. A qualitative descriptive methodology was used. Ten community dwelling adults (>18 years) with unilateral major LLAs (transtibial, transfemoral, and knee disarticulation) attending outpatient follow-up at a specialized rehabilitation center were recruited. Participants were purposively sampled for variation in prosthesis use and level of amputation. One-on-one semistructured in-depth interviews were conducted in person or by telephone. The interviews were audio recorded, transcribed verbatim, and analyzed inductively using thematic analysis. The experiences of individuals with major LLA were organized into three overarching themes: everyday experiences using a prosthesis, extrinsic factors influencing prosthesis use, and intrinsic factors influencing prosthesis use. These themes, and their associated subthemes, highlight how individuals use their prosthesis and the various factors perceived to act as barriers and facilitators to prosthesis use in everyday life. These findings provide valuable insight into the everyday experiences of individuals with LLA and can be used to implement strategies to optimize prosthesis use.

Pain burden in children with cerebral palsy (CPPain) survey: Study protocol.

Pain is a significant health concern for children living with cerebral palsy (CP). There are no population‐level or large‐scale multi‐national datasets using common measures characterizing pain experience and interference (ie, pain burden) and management practices for children with CP. The aim of the CPPain survey is to generate a comprehensive understanding of pain burden and current management of pain to change clinical practice in CP. The CPPain survey is a comprehensive cross‐sectional study. Researchers plan to recruit approximately 1400 children with CP (primary participants) across several countries over 6‐12 months using multimodal recruitment strategies. Data will be collected from parents or guardians of children with CP (0‐17 years) and from children with CP (8‐17 years) who are able to self‐report. Siblings (12‐17 years) will be invited to participate as controls. The CPPain survey consists of previously validated and study‐specific questionnaires addressing demographic and diagnostic information, pain experience, pain management, pain interference, pain coping, activity and participation in everyday life, nutritional status, mental health, health‐related quality of life, and the effect of the COVID‐19 pandemic on pain and access to pain care. The survey will be distributed primarily online. Data will be analyzed using appropriate statistical methods for comparing groups. Stratification will be used to investigate subgroups, and analyses will be adjusted for appropriate sociodemographic variables. The Norwegian Regional Committee for Medical and Health Research Ethics and the Research Ethics Board at the University of Minnesota in USA have approved the study. Ethics approval in Canada, Sweden, and Finland is pending. In addition to dissemination through peer‐reviewed journals and conferences, findings will be communicated through the CPPain Web site (www.sthf.no/cppain), Web sites directed toward users or clinicians, social media, special interest groups, stakeholder engagement activities, articles in user organization journals, and presentations in public media.

Everyday Life Participation Using Powered Wheelchair Standing Devices by Boys With DMD.

Powered wheelchair standing devices (PWSDs) allow supported standing for activity; however, little is known about their use. To understand factors affecting use of supported standing for participation among boys with Duchenne muscular dystrophy (DMD) and characteristics of successful users, we gathered data over 7 days from boys who had used PWSDs for 24 months, using a smartphone application. We used descriptive statistics to identify factors that affected their participation. Physical/social engagement and independence were motivators for standing in PWSDs. Enablers included positive attitudinal/social environments. Barriers included pain during supported standing and lack of physical environment accessibility. The characteristics of successful users were identified. Supported standing via PWSDs has potential to improve participation for boys with DMD. The disease stage, individual personal factors and environmental supports impact on use. Therapists should carefully consider and manage factors that impact on uptake and sustainability of use.

The Feasibility of Taekwondo for Addressing Social Interaction and Social Participation in Children

Background: Children with autism spectrum disorder (ASD) often experience physical, social, and emotional barriers that impact participation in extracurricular activities, such as taekwondo. Engaging in taekwondo may provide opportunities for advancing social abilities as well as developing health-promoting behaviors and routines. Therefore, the purpose of this feasibility study was to explore the effectiveness of using a form of martial arts, taekwondo, as an intervention to promote social participation in everyday life. Method: A mixed-methods design was used. Three children between 7 and 8 years of age who met the ASD criteria participated in a 7-week taekwondo program. The children engaged in interviews before and after the program. The parents completed the Autism Social Skills Profile-2 (ASSP-2) and completed pre and post interviews. Results: Four themes emerged from the qualitative data: social interactions, physical abilities, community barriers and supports, and intervention feasibility. Overall, the qualitative data highlighted the children’s increased confidence with social interaction, interests in exploring activities, and program satisfaction. Although not statistically significant, the ASSP-2 scores increased for each child after participation in the program. Conclusion: This study suggests that taekwondo may promote self-confidence in social and physical abilities, leisure exploration, and participation in children with social interaction skills deficits.

Occupational performance coaching for stroke survivors delivered via telerehabilitation using a single-case experimental design.

IntroductionSustaining a stroke has a devastating, long-term impact on participation in everyday life. Despite the recognition of participation as a key outcome of stroke rehabilitation, there are few effective interventions that address participation. Occupational performance coaching is a promising intervention designed to improve participation among stroke survivors. Delivery of occupational performance coaching using telerehabilitation could improve access. This study examined the feasibility, acceptability and potential efficacy of telerehabilitation occupational performance coaching.MethodA single-case experimental design was used. Six community-dwelling stroke survivors received 10 sessions of telerehabilitation occupational performance coaching over 16 weeks. We examined the feasibility and acceptability of telerehabilitation occupational performance coaching, improvement in performance and satisfaction with identified goals.ResultsTelerehabilitation occupational performance coaching was feasible and acceptable to deliver; participants who started the intervention completed it and reported high satisfaction and a strong therapeutic relationship. All participants experienced technological issues that required resolution. Goal-performance and/or satisfaction improved for five of six participants. Sixty-four percent of goals showed trends for improvement and 43% showed significant improvements.ConclusionsFindings support the feasibility and acceptability of telerehabilitation occupational performance coaching, along with its efficacy for improving performance and satisfaction with performance of goals. Further research is needed to prove the effectiveness of telerehabilitation occupational performance coaching and to determine who may benefit most.

Barriers and facilitators to participation for children and adolescents with disabilities in low- and middle-income countries – A scoping review

BackgroundResearch has shown that all children and adolescents have the right to participate in their everyday life. However, little is known about what impacts the participation of children and adolescents with disabilities living in low-and middle-income countries.ObjectiveThe present study undertakes a scoping review of research to synthesise the current literature about barriers and facilitators to participation in everyday life for children and adolescents with disabilities living in low- and middle-income countries.MethodA scoping review was conducted. The databases Psyc INFO, MEDLINE, CINAHL, Pubmed, ERIC and African Wide information were searched for studies published between 2001 and April 2018. Data was analysed using deductive content analysis. The barriers and facilitators to participation were categorised into personal factors, social factors, environmental factors, and policy and programme factors.ResultIn the end, 17 articles were included for data extraction as they mentioned barriers and facilitators to participation for children and adolescents with disabilities. Most of the reviewed studies reported on barriers to participation. Only one of the studies was performed in a country classified as a low-income country; all other studies were performed in middle-income countries. The results indicate that some factors, especially social factors, could be perceived as both facilitators and barriers to participation.ConclusionThere is a lack of studies describing barriers and facilitators in low- and middle- income countries. Barriers and facilitators in proximity to the child and family are most frequently described in the literature.

Predictive Factors for Sensory Processing Disorders

Background: Identifying sensory processing differences in children with sensory reactivity problems (both with and without prenatal and perinatal problems) is essential to providing interventions that enhance development and participation in everyday life. Methods: This study conducted a statistical analysis between the Sensory Profile-2 sensory questionnaire and the study variables: pregnancy, fertility treatment, delivery and prematurity (n=69). Results: This study yielded statistically significant differences in sensory processing at the visual level (p-value=0.003), in proprioception (body position) (p-value<0.001) and in emotional problems relating to stressful and traumatic pregnancy, prematurity (p-value=0.026) and high-risk pregnancy, respectively, among children with and without perinatal and prenatal problems. Conclusions: These findings confirm that there are differences in the sensory processing of children with sensory processing disorders who have suffered perinatal and postnatal problems compared to those who have not.

Tackling hypoglycemia in children: teams, targets and technology

On the occasion of the Somogyi Award lecture this review focusses on the current advances in tackling hypoglycemia in pediatric patients with type 1 diabetes providing evidence for the importance of multidisciplinary teams, ambitious glycemic targets and implementation of diabetes technology. Meal-related intensified insulin replacement with differential substitution of basal- and bolus insulin is the therapy of choice in the care of children and adolescents with type 1 diabetes. The use of insulin pumps and continuous glucose monitoring devices is increasing rapidly, with the type of insulin therapy (insulin pen or pump) depending on the age of the patients and family preference. Education appropriate to the age and current challenges is essential for the children's participation in everyday life as undisturbed as possible. New parameters like time in range and time below range suitable for identifying high glycemic variability as risk factor for severe hypoglycemia complement the HbA1c targets and the ambulatory glucose profile (AGP) in a shared decision making on therapeutic adjustments between the diabetes team and people with diabetes. Automated insulin delivery as a hybrid closed loop or dosing advice using artificial intelligence are becoming a clinical reality. However, diabetes education as a team approach, defining clear targets with outcomes evaluated in multinational registries like SWEET remain important for shaping the future of pediatric diabetology.

Perception Versus Reality: Subjective and Objective Neighborhood Characteristics and Cognitive Function in REGARDS

Does the world shrink as we age? The neighborhood captures a spatial area someone inhabits and moves through on a daily basis. It reflects a balance between internal perceptions and abilities, and the external environment which may enable or restrict participation in everyday life. We frequently hear that older adults have shrinking neighborhoods given declining functional mobility. This is associated with declines in physical and cognitive functioning, depression, poorer quality of life, and mortality. Knowledge of the interplay between objective and subjective neighborhood measurement remains limited. This symposium will explore these linked yet distinct constructs based on secondary data analyses of the Reasons for Geographic and Racial Differences in Stroke (REGARDS) study, a racially diverse sample of 30,000+ aging Americans. Finlay investigates how someone’s perceived neighborhood size (in number of blocks) varies by individual and geographic characteristics including age, cognitive function, self-rated health, and urban/rural context. Esposito’s analyses focus on neighborhood size in relation to race and residential segregation. Clarke compares subjective perceptions of neighborhood parks and safety from crime to objective indicators, and examines variations by health and cognitive status. Barnes will critically consider implications for how older adults interpret and engage with their surrounding environments. The symposium questions the validity of neighborhood-based metrics to reflect the perspectives and experiences of older residents, particularly those navigating cognitive decline. It informs policy-making efforts to improve physical neighborhood environments and social community contexts, which are critical to the health and well-being of older adults aging in place.

Activities in Daily Living: The development of a new client-centred ADL intervention for persons with stroke

Background An intervention that contains several interacting components can be defined as a complex intervention. This intervention was developed in accordance with the Medical Research Council (MRC) guidance for complex interventions. Aim To describe the development, theoretical framework, and content of a client-centred activities in daily living intervention (CADL) for people with stroke. Material and methods Different steps were used; identifying the evidence base, identifying/developing theory and the modelling process and outcomes in the development of the CADL. The remodelling of the process and content of the intervention that emerged are defined. Results Findings from a series of qualitative studies of people with stroke demonstrated the need to develop an ADL intervention based on the clients’ lived experiences. The theoretical framework is based on empirical research, theories about human occupation and client-centredness. The CADL is applying an occupational and phenomenological perspective in order to enable agency in daily activities and participation in everyday life among persons with stroke. Conclusions and significance The article can be used as an example of how to present the development and theoretical framework of a new complex intervention in occupational therapy.

Local development through the foundational economy? Priority-setting in Danish municipalities

The foundational economy perspective suggests that industries, which provide services essential to all citizens’ well-being and participation in everyday life, should be placed centrally in economic development policy. This article studies the extent to which local governments put emphasis on foundational industries in their strategies for development. Moreover, drivers behind priority-setting are examined. Based on an analysis of all 98 Danish municipalities’ planning strategies and semi-structured interviews with relevant actors from two rural municipalities, we find that foundational industries are to a great extent emphasised, even if they are not characterised as the foundation for economic development. Rather, foundational industries are prioritised in the absence of other options or when municipalities are not compelled to put local job creation as a crucial focus to attract and maintain inhabitants.

A Life Course Perspective on Growing Older With Cerebral Palsy.

Despite most children with cerebral palsy (CP) now living within typical life spans, little is known about how the effects of CP unfold across the life course and impact participation in everyday life during adulthood. In this study, we explored the experiences of 38 adults growing older with CP. Data were gathered using semi-structured interviews focused on participants’ engagement in activities in their community and analyzed using a life course perspective to deepen our understanding of the experiences of our participants. We found that individual agency, family and social contexts, as well as larger sociocultural contexts all shaped participants’ experiences as they grew older. The findings highlight the usefulness of the life course perspective for understanding how the effects of a diagnosis of CP unfold over time. Further use of this perspective can better inform health care services to meet the needs of adults with CP aging with a lifelong disability.

Measures of Participation in Persons With Musculoskeletal Conditions.

Measures of Participation in Persons With Musculoskeletal Conditions.

“Unknown world of wheelchairs” A mixed methods study exploring experiences of wheelchair and seating assistive technology provision for people with spinal cord injury in an Irish context

Aim This study explores people living with spinal cord injury (SCI) experiences and perspectives of wheelchair and seating assistive technology service provision within an Irish context. There are few studies that examine the process of wheelchair and seating provision and the connection between satisfaction, performance, and participation. Method This mixed methods study explores participant experiences in two parts. Part one presents a thematic analysis of eight in-depth semi-structured interviews with wheelchair service users living with SCI. Part two presents the results content and frequency analysis of an on-line survey of wheelchair service user’s experience and satisfaction with wheelchair and seating service provision from respondents with SCI (n = 117) taken from a larger national survey from respondents with various diagnoses (n = 273). Results Findings from the interviews and survey revealed the meaning of wheelchair and seating assistive technology provision as essential to life following SCI. Barriers within the provision system such as wait times and funding were found to impede people’s rights and freedom from initial assessment through to follow up, maintenance and repair. Conclusions The current implementation of wheelchair and seating assistive technology provision as described in this paper impacts the ability of individuals living with an SCI to participate as equal members of society. A review of wheelchair provision is essential to optimize access to services for appropriate wheelchairs. IMPLICATIONS FOR REHABILITATION As a basic human right, appropriate wheelchair and seating assistive technology provision facilitates people’s optimal independence, health and well-being, social engagement, and participation in everyday life. The development of adequate wheelchair services should be a priority area for individuals with SCI who use wheelchair and seating assistive technology. National wheelchair and seating assistive technology provision policies in alignment with internationally developed best practice guidelines to provide equal access to services which include assessment, delivery, training, maintenance, and follow-up are essential.

Functional Strength Training In Children With Spastic Cerebral Palsy

To find out functional strength training exercise on improving gross motor function among the children with spastic hemiplegic cerebral palsy children. Single group pre-experimental research design. The most common cause of movement disability in infancy is cerebral palsy. Cerebral palsy patients have impairments such as spasticity, low muscle strength and selective motor control in their body function. Such deficiencies may limit activity performance and participation in everyday life. Improving and optimising activities and involvement are crucial treatment objectives. Functional strength workouts are vital to overcoming obstacles to improving the functionality of children with neurological issues. 92 subjects of spastic hemiplegic cerebral palsied aged 4-8, male and female with spastic hemiplegic cerebral palsy were selected under purposive sampling technique and received functional strength training exercise for a period of ten weeks. To assess the gross motor function (functional independence) pre and post the exercise program, Gross motor functional measure was used. Results: The pre and post measurements shows significant changes in the gross motor function among children with spastic hemiplegic cerebral palsy. The results of the post-test mean values show improvement in gross motor functions after functional strength training program (p<0.05). The functional strength training program proves that increased gross motor function and thereby improvement in functional abilities among children with spastic hemiplegic cerebral palsy after ten weeks of intervention.

Internet opportunities and risks for adolescents with intellectual disabilities: A comparative study of parents’ perceptions

Background: In contemporary society internet and digital competencies are used to perform activities.Aim: The aim of this study is to investigate opportunities and risks of internet use as perceived by the parents of adolescents with intellectual disabilities (ID) in comparison with a national reference group of parents of adolescents.Methods: This was a cross-sectional study with group comparisons using a national survey. Analyses were carried out using Fisher’s exact test and logistic regression to control for confounding factors.Results: A significantly higher proportion of parents of adolescents with ID perceive opportunities associated with internet use and playing games, and a lower proportion perceive risks with negative consequences, compared with the reference group. Significantly more parents of adolescents with ID perceive their adolescent never use smartphones and social media compared with the reference group. Fewer parents of adolescents with ID have concerns about online risks for their adolescents compared with the reference group.Conclusion and Significance: The results provide new knowledge for occupational therapists to support positive risk-taking in internet-use for adolescents with ID, in collaboration with their parents, to enable the development of digital competencies and digital participation in everyday life in a digitalised society.

Clinical Reasoning for Speech Sound Disorders: Diagnosis and Intervention in Speech-Language Pathologists' Daily Practice.

Purpose This study aims to give an insight in clinical reasoning (diagnosis and intervention) of speech-language pathologists (SLPs) in the Netherlands for children with speech sound disorder (SSD). Method The study featured a mixed-method (qualitative and quantitative) design. Semistructured interviews containing nondirective, open-ended questions were conducted with 33 SLPs, which were analyzed using a constant comparative analysis. Other SLPs (137) filled out a questionnaire on the same topics. Multiple-choice questions were analyzed by descriptive frequencies, while open-ended questions were analyzed thematically. Results The results indicate that SLPs use a variety of assessments to diagnose SSD, complemented by observation and, often, case history. In total, 85 different diagnostic labels were reported. The choice of intervention is based on what is appealing to the child and what matches his or her age as well as on the specific diagnosis and severity. Interventions are used for multiple speech disorders, and according to SLPs, parents play a large role in diagnostics and intervention. Conclusion These results reveal the need for (a) a clear and consistent terminology of diagnoses in the field of pediatric SSD, (b) a fast and easy-to-administer comprehensive differential diagnostic instrument in combination with an instrument to assess participation in everyday life, and (c) a tool to conduct a case history online.

Participation in Everyday Life Before and After a Housing Adaptation

Housing adaptation aims to enable clients to live independently in their own homes. Studies focusing on participation in everyday life following a housing adaptation are lacking and needed. This study aimed to explore housing adaptation clients' experiences of participation in everyday life before and after a housing adaptation, through the lens of a housing adaptation, using a qualitative follow-up design, with 11 participants. It was found that when the housing adaptation met the participants' needs, performance of activities improved and the housing adaptation opened doors to engagement and participation in everyday life. Thus, focus on performance and engagement in everyday life at the onset of the housing adaptation process, combined with regular follow-ups, may enhance participation.