A Qualitative Photo Elicitation Research Study to elicit the perception of young children with Developmental Disabilities such as ADHD and/or DCD and/or ASD on their participation

Abstract

Participation, defined as 'involvement in life situations' according to the World Health Organisation, is a well-recognized concept and critical indicator of quality of life. In addition it has become an important outcome measure in child rehabilitation. However, little is known about the level of participation of young children with Developmental Disabilities. The aim of this study was to capture their subjective experiences of participation. An adapted informed consent based on a comic strip was used to get the children's assent. A Photo Elicitation study was used, in which photographs were taken by the children when they were involved in meaningful activities. The photographs were then used to facilitate communication with the children and to initiate in depth-interviews. Forty-seven interviews with 16 children between five and nine years were conducted based on their photographs. This method generated rich data, confirming that young children with Developmental Disabilities were able to inform us accurately on their experiences of participation. Data was analysed by means of an inductive thematic analysis. Results showed that children perceived their participation as satisfying when they can play, learn and join in family gatherings resulting in feelings of inclusion, recognition and belonging. When there are-on occasions-moments that their participation was obstructed, the children used two strategies to resolve it. Or they walked away from it and choose not to participate, or when autonomously motivated for the activity, they relied primarily on their context (i.e. mothers) as enabling their participation. Related to the data, children discussed themes related to their person, activities, connections and mediators between those themes. These themes fit well within earlier and current research on the subject of participation.

Children and young people’s experiences of living with developmental coordination disorder/dyspraxia: A systematic review and meta-ethnography of qualitative research

“…The characteristics of the fifteen included papers are presented in Table 1 . Six of the studies were conducted in the United Kingdom [ 31 , 45 , 49 – 52 ], five in Canada [ 33 , 34 , 44 , 53 , 54 ], one in Austria/ Italy [ 55 ], one in Brazil [ 56 ], one in Belgium [ 57 ], and one in New Zealand [ 58 ]. In total, data from one hundred and nine participants were included in the qualitative synthesis.…”

“…The experience of struggling to learn and perform everyday activities and routines was frequently reported across the included studies [ 31 , 33 , 34 , 44 , 45 , 49 , 51 , 52 , 55 , 57 ]. Typical childhood activities such as learning to ride a bicycle required additional support and extended periods of practice to master skills and build stamina [ 33 , 34 , 44 , 49 , 52 ].…”

“…Requiring parental assistance to complete or accomplish activities left some children feeling embarrassed and guilty, and perceiving themselves as a burden on their parents, because they could not perform activities independently or without creating a mess [ 34 , 44 , 50 , 52 ]. However, in most cases children and young people recognised their need for parental assistance and perceived assistance positively [ 31 , 33 , 34 , 44 , 50 , 52 , 57 , 58 ]. Participants spoke frankly about parental support, which was provided in various ways, such as teaching skills, scaffolding the demands of the task, helping the child understand their difficulties [ 34 , 52 , 57 ], advocating for academic support [ 31 , 52 ], and providing practical and emotional support that facilitated participation in community and leisure activities [ 50 , 57 , 58 ].…”

“…Physical education classes, school sports, recess time, and out of school activity were associated with performance difficulties and emotional distress [ 31 , 34 , 44 , 45 , 50 , 52 , 53 ]. Factors such as fatigue, pain, poor performance endurance and fear of injury influenced participant’s motivation, involvement, and enjoyment of physical activities in school activities and out-of-school activities [ 33 , 34 , 44 , 50 , 57 , 58 ]. As summed up by this participant “It’s just hard to get going, hard to keep going” [ 50 ].…”

“…As described by this participant; ‘It is not because he or she is going fast it is just me not knowing because I don’t understand what they mean’ [ 31 , 52 ]. In contrast, some participants’ used supportive strategies, such as sitting beside a friend or a Learning support assistant so that they could explain the information again [ 57 ]. While, others felt that an individualised learning approach suited their ability to learn new skills and information [ 31 , 44 , 52 ].…”