‘It’s important that we learn too’: Empowering parents to facilitate participation in physical activity for children and youth with disabilities

Aim: The actions and behaviors of parents have been identified as key factors that influence a child’s participation in physical activity. However, there is limited knowledge of how parents can be supported to embody facilitative roles. This study aimed to explore how an ecological intervention encourages parents of children with disabilities to develop as facilitators, to enable ongoing physical activity participation in a child’s local environment.

Methods: A qualitative design using grounded theory was employed. Forty four parents (26 mothers, 18 fathers) of 31 children with a range of disabilities (mean age 12y 6m (SD 2y 2m); 18 males) partaking in the Local Environment Model intervention at Beitostolen Healthsports Centre in Norway participated in the study. Data were derived from the triangulation of semi-structured interviews and participant observation. Data analysis was an iterative approach of constant comparison, where data collection, memo writing, open, axial and selective coding analysis, were undertaken simultaneously. Findings were consolidated into a model describing the central phenomenon and its relationship to other categories.

Results: Thematic concepts uncovered in this study describe a social process of parent learning and empowerment, comprising three primary components; (i) active ingredients of the intervention that enabled learning and empowerment to transpire, (ii) parent learning and empowerment as a process, and (iii) related outcomes.

Conclusion: A family-centered approach, encompassing family-to-family support, may enhance physical activity participation outcomes for children and youth with disabilities.     

Shifts in patients’ question-asking behaviour between 2007 and 2016: An observational study of video-recorded general practice consultations

ObjectiveTo gain insight into patient participation in general practice by examining if and how patients’ question-asking behaviour has changed over the years (2007–2016).MethodsA random set of real-life video-recorded consultations collected in 2015–2016 (n = 437) was observed and compared with that of a former study in 2007–2008 (n = 533). Patients’ question-asking behaviour was coded using an adapted RIAS protocol containing six categories: medical condition/therapeutic regimen; psychosocial; social context; lifestyle; ask for opinion doctor; practical. GPs and patients completed questionnaires about their background characteristics. Data were analysed using multi-level analysis.ResultsPatients asked fewer questions in 2016 than in 2007. The type of question-asking behaviour changed significantly: in particular medical questions decreased while practical questions increased. Less educated patients asked significantly more practical questions than higher educated patients.ConclusionContrary to our expectations, patients’ question-asking has decreased in 2016 compared to 2007, while the average consultation length has increased. The type of questions shifted from medical to practical, especially in less educated patients. It seems that GPs’ professional role has expanded over time, since patients nowadays ask their GP more non-medical questions.Practice implicationsGPs probably could continue facilitating patient involvement by more frequently using partnership-building and supportive communication.     

Families’ control preference for participation in patient care in adult intensive care

ObjectiveUnderstand families’ preferences and observed participation in patient care in an adult ICU.Research methodologyThe mixed-methods design used survey and naturalistic observation to collect data from a convenience sample of 30 family members of critically ill patients.SettingTwo public hospital intensive care units in Australia.Main outcome measures1) Families’ preferences for participation in decision-making and physical patient care activities in the adult intensive care unit, measured using a modified Control Preference Scale; 2) the type and frequency of family participation in patient care activities in the intensive care unit.ResultsAlmost half (47%) reported a preference to share in decision-making about care for their relative with healthcare professionals; 17% reported a preference for active participation in decision-making. Alternatively, most families preferred a passive (60%) role in the physical care of their relative ; 33% preferred shared participation with staff and very few (3%) preferred active participation with little involvement of staff. Of the 193 activities observed, family participation in physical care was the least frequent (24%).ConclusionDifferences emerged in family preferences for participation in physical care compared to their involvement in decision-making about care for their relative. The findings indicate a need for tailored interventions to support family participation aligned with their preferences.     

How clerks understand the requests of people living with aphasia in service encounters

ABSTRACT

Aphasia often restricts participation. People living with aphasia (PLWA) engage in fewer activities, which leads to fewer interactions than before aphasia. Analyses of interactions with non-familiar people in activities of daily life could provide knowledge about how to integrate these situations in rehabilitation and facilitate ongoing PLWA participation post-rehabilitation. This qualitative study is the first to examine how PLWA make their requests understood in service encounters despite aphasia. Six people living with moderate or severe aphasia were video-recorded in situations of service encounters, e.g., pharmacies, specialised shops, restaurants, and others. We identified fifty-nine occurrences with one or several difficulties in the formulation of the request. They were examined, including the clerks’ responses and ensuing interaction using multimodal conversation analysis. Results showed that PLWA used nonverbal communication within the physical environment and the context of the interaction to support verbal production. In the majority of situations, the clerks understood the request promptly. In other situations, they both collaborated to achieve a clear understanding of the request. Moreover, the findings attest to the competence of people living with moderate or severe aphasia in engaging in service encounters and add to the knowledge base about interaction and social participation in aphasia.     

Social participation in persons with upper limb amputation receiving an esthetic prosthesis

Study DesignQualitative study.IntroductionAn amputation injury to the hand may lead to not only impaired hand function but also psychosocial consequences.Purpose of the StudyThe purpose of the study was to explore personal experiences of social participation for persons provided with an esthetic prosthesis after acquired upper limb amputation.MethodsThirteen persons with acquired upper limb amputation, who were in need of and had received an esthetic prosthesis, were interviewed. The transcribed text was subjected to content analysis.ResultsThe emotional reactions to a visibly different hand were linked to a changed appearance and a feeling of being exposed. Recollecting the accident could result in nightmares and sleeping disorders. A change of personality, due to sadness after the amputation was expressed, as well as social insecurity and impact on relations and life roles. Adapting to social challenges comprised hiding or exposing the hand, using personal internal resources and receiving support from others. The esthetic prosthesis contributed to an intact appearance and could serve as a facilitator for initial or long-term social participation. The time that had passed since the injury made it easier to deal with the consequences or in achieving acceptance.DiscussionCoping with emotions and social relations after an acquired amputation can be difficult and complex.ConclusionsIndividual needs must be considered and questions about appearance and how it may affect social participation must be asked. An esthetic prosthesis can normalize the appearance and offer the confidence needed to facilitate social participation in those struggling with appearance-related concerns.