“It is something that gives us hope”: Lived experience among parents to children with cerebral palsy who are non-ambulant of the phenomenon physical activity, with or without the use of a novel dynamic standing device

IntroductionRegular physical activity confers health benefits for all. Parents commonly want their children to be physically active, and want to be physically active themselves, but children with cerebral palsy (CP) who are non-ambulant face challenges, and they need support to be physically active. Dynamic standing in the novel motorized assistive device Innowalk has positive effects in children who are non-ambulant—it gives them a chance to be physically active. The aim of this study was to explore the lived experience of physical activity of parents themselves and for their children with cerebral palsy who are non-ambulant.MethodsA descriptive inductive design with a hermeneutic phenomenological approach was used for the analysis of interviews with 11 parents of children with CP who are non-ambulant who participated in a study of exercise effects of dynamic standing.ResultsThe parents experienced physical activity for their children as being important but difficult, especially for their child, as described in Theme 1: “Being aware of health benefits while struggling with family time.” The children were perceived as being dependent on other people, the environment, and equipment for participating in physical activity, referring to Theme 2: “Being dependent.” The opportunity for their children to become physically active on a regular basis through an assistive device gave the parents hope for a better life, which formed Theme 3: “Getting hope in a challenging life situation.”ConclusionPhysical activity for children with CP who are non-ambulant is possible through an elaborate network of social relations and environmental conditions. Limiting the degree of dependence and containing the negative consequences of high a degree of dependence are vital in the support of physical activity. Relations, support, and assistive devices that strengthen empowerment and autonomy should be prioritized, and if this works, the experience of physical activity can be positive, giving families hope

Physical activity on prescription for children with obesity: a focus group study exploring experiences in paediatric healthcare

BackgroundInsufficient physical activity is a growing public health concern and is closely linked to obesity in both adults and children. Swedish physical activity on prescription (PAP) is effective in increasing physical activity levels in adults, but knowledge about how PAP is used in paediatric healthcare is lacking. Therefore, this study aimed to explore experiences of working with PAP for children with obesity amongst paediatric staff and managers.MethodsSeven focus group discussions with 26 participants from paediatric outpatient clinics in western Sweden were conducted. Data were analysed both inductively and deductively, framed by the Normalization Process Theory's four core constructs: coherence, cognitive participation, collective action, and reflexive monitoring.ResultsThe PAP work for children with obesity was experienced to be about helping children to become physically active, and less about losing weight. Identified barriers for using PAP were the non-uniform nature of the work and a perceived lack of guidelines. Collaboration with physiotherapists and physical activity organisers outside the organisation was identified as an important facilitator. An important contextual factor for implementing PAP is the collaboration between paediatric clinics and physical activity organisers. In the transition between these stakeholders, maintaining a family-centred approach when working with PAP was experienced as challenging.ConclusionsPAP is a well-known intervention that is inconsistently used for children with obesity. The intervention should include a family-centred approach for this patient group. It also needs to align better with existing collaborations with other healthcare units as well as with new forms of collaboration with physical activity organisers in the community

Aquatic therapy for children with Duchenne muscular dystrophy: a pilot feasibility randomised controlled trial and mixed-methods process evaluation.

BACKGROUND: Duchenne muscular dystrophy (DMD) is a rare disease that causes the progressive loss of motor abilities such as walking. Standard treatment includes physiotherapy. No trial has evaluated whether or not adding aquatic therapy (AT) to land-based therapy (LBT) exercises helps to keep muscles strong and children independent. OBJECTIVES: To assess the feasibility of recruiting boys with DMD to a randomised trial evaluating AT (primary objective) and to collect data from them; to assess how, and how well, the intervention and trial procedures work. DESIGN: Parallel-group, single-blind, randomised pilot trial with nested qualitative research. SETTING: Six paediatric neuromuscular units. PARTICIPANTS: Children with DMD aged 7-16 years, established on corticosteroids, with a North Star Ambulatory Assessment (NSAA) score of 8-34 and able to complete a 10-m walk without aids/assistance. Exclusions: > 20% variation between baseline screens 4 weeks apart and contraindications. INTERVENTIONS: Participants were allocated on a 1 : 1 ratio to (1) optimised, manualised LBT (prescribed by specialist neuromuscular physiotherapists) or (2) the same plus manualised AT (30 minutes, twice weekly for 6 months: active assisted and/or passive stretching regime; simulated or real functional activities; submaximal exercise). Semistructured interviews with participants, parents (n = 8) and professionals (n = 8) were analysed using Framework analysis. An independent rater reviewed patient records to determine the extent to which treatment was optimised. A cost-impact analysis was performed. Quantitative and qualitative data were mixed using a triangulation exercise. MAIN OUTCOME MEASURES: Feasibility of recruiting 40 participants in 6 months, participant and therapist views on the acceptability of the intervention and research protocols, clinical outcomes including NSAA, independent assessment of treatment optimisation and intervention costs. RESULTS: Over 6 months, 348 children were screened - most lived too far from centres or were enrolled in other trials. Twelve (30% of target) were randomised to AT (n = 8) or control (n = 4). People in the AT (n = 8) and control (n = 2: attrition because of parental report) arms contributed outcome data. The mean change in NSAA score at 6 months was -5.5 [standard deviation (SD) 7.8] for LBT and -2.8 (SD 4.1) in the AT arm. One boy suffered pain and fatigue after AT, which resolved the same day. Physiotherapists and parents valued AT and believed that it should be delivered in community settings. The independent rater considered AT optimised for three out of eight children, with other children given programmes that were too extensive and insufficiently focused. The estimated NHS costs of 6-month service were between £1970 and £2734 per patient. LIMITATIONS: The focus on delivery in hospitals limits generalisability. CONCLUSIONS: Neither a full-scale frequentist randomised controlled trial (RCT) recruiting in the UK alone nor a twice-weekly open-ended AT course delivered at tertiary centres is feasible. Further intervention development research is needed to identify how community-based pools can be accessed, and how families can link with each other and community physiotherapists to access tailored AT programmes guided by highly specialised physiotherapists. Bayesian RCTs may be feasible; otherwise, time series designs are recommended. TRIAL REGISTRATION: Current Controlled Trials ISRCTN41002956. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 21, No. 27. See the NIHR Journals Library website for further project information

Participation in physical activities and sedentary behaviour among children with physical disabilities

Participating in physical activity promotes physical and mental health. Children with physical disabilities are not as physically active as other children. They tend to participate in lower intensity physical activity, choose more passive activities with less variety and have more sedentary time. The overall aim of this thesis was to gain knowledge about participation in physical activities, to identify associated factors for school and leisure time and to explore the perceived experiences of the children and the parents about possible facilitators or barriers associated with physical activities. A further aim was to evaluate the feasibility and effectiveness of Physical Activity Referral (PAR) and outcome measures for children with physical disabilities and its effectiveness on increasing participation in physical activity and decreasing sedentary behaviour. The thesis is comprised of three studies with children with various gross- and fine motor, communicative and cognitive functions. In Study I (Paper I) a total population of 364 children and adolescents with cerebral palsy (CP) aged 7-17 years was studied by using cross-sectional data from the National Quality Registry CP follow-up programme (CPUP). In Study II qualitative interviews with 16 children with CP, aged 8-11 years (Paper II), and with 25 of their parents (Paper III) were performed and analysed by content analysis. In Study III (Paper IV), 14 children with physical disabilities, aged 7-12 years, participated in PAR together with 24 of their parents. The intervention was based on a written agreement of self-selected physical activities, motivational interviewing (MI), goal-directed outcome measurements Canadian Occupational Performance measure (COPM) and Goal Attainment Scaling (GAS) and assessments including Gross Motor Function Measure (GMFM-66), physical activity monitors, the International Physical Activity Questionnaire (IPAQ) and other questionnaires at baseline, and after 8 and 11 months. Children and adolescents with more severe motor limitations, with intellectual disability and with thinness seem to have the greatest needs for interventions to increase their participation in physical activities and reduce sedentary behaviour. Children discussed that they want to be asked about their wishes and needs, and get the opportunity to try self-selected physical activities with individualised support, as well as to have fun with family and friends, have someone to do the activity with and enjoy the sensation of speed. Environmental factors could be either facilitators or barriers, while pain, fatigue and the perception of not being good enough were considered barriers. The parents experienced several challenges when their child wanted to be physically active: parents wanted to protect their child while also pushing them towards independence. They wanted competent persons to be available to assist their child in participating in the physical activities and support them in finding friends to be active with. Family culture and attitudes affect children’s motivation for being physically active and should be taken into account. In Study III the families were compliant and there were no dropouts; there were positive evaluations of PAR. The families learned more about the accessibility and locations of physical activities, and the children got the opportunity to try their self-selected activities with individualised support. Several children made new friends through engaging in self-selected group activities. In addition, most children were able to maintain the physical activity levels; the outcome scores for GMFM-66, COPM and GAS were maintained for some and increased for most children. Modifications by synchronising physical activity measures into the same time periods and to give a feedback to the families close in time to the baseline measures are recommended. In this thesis the children with the greatest needs of a more active lifestyle have been identified, and we have listened to their voices and talked with them and their parents before designing an individualised intervention. Families with different ethnical, cultural and socioeconomic backgrounds participated in the studies. PAR promotes an active lifestyle by increasing participation, motivation and engagement in physical activities and social participation. The intervention involves both everyday and organised habitual physical activities. To our knowledge, this is the first study about PAR in children with disabilities that measures objective and estimated physical activity. The results suggest that PAR is feasible and effective for children with physical disabilities

Facebook som aktivitetsarena - en meningsfull aktivitet eller vägen till ohälsa?

Syftet är att undersöka huruvida det ökande Facebook-användandet påverkar unga människors aktivitetsbalans och hälsa. Metoden som används i denna studie är en kvantitativ inriktad elektronisk enkät, där det ställs dels etnografiska frågor, men huvudsakligen frågor om undersökningspersonernas Facebook-användande för att se om/vad för effekt det har för deras hälsa och aktivitetsbalans. Det som framkommer i resultatet är att det inte finns någon signifikant skillnad på den skattade hälsan och hur de skattar Facebooks påverkan på diverse aktiviteter mellan de användare som använder Facebook mer och de som använder Facebook mindre. Det framkom att kvinnor är nästan dubbelt så aktiva på Facebook som män, men att de inte skattar sin hälsa lägre

CIRKUS I GRUNDSKOLA OCH GRUNDSÄRSKOLA - samspel, omgivningsfaktorer och relevanta krav i en träningssituation

This study looked at two groups of adolescents aged 12-17 years who had participated in circus training. One group had some form of disability while the other had none. The study was carried out as a qualitative study with observations, interviews and a questionnaire used as methods of gathering data. A small part of the study was quantitative and an observation chart was used. The purpose was to examine the importance of teamwork, environmental factors and the necessary requirements during a learning situation. The results of the study showed that all of the factors, in combination with one another, were important during the learning situation. If the participants worked well together, the circus teacher was able to use relevant demands and the environment was stimulating and not stressful. The negative attitude towards the failure of others in the group became less prevalent and the participants felt more responsible with increased self esteem. Different approaches or theories about disability, or being different, were observed and had an effect on the participants’ self-esteem. The main conclusion was that a training situation is complex and that participants should be met with respect and with an attitude that no one should be afraid of failure. Another conclusion was that the approaches or theories about disability do not have to concur but should complement each other