Opportunity to participate in planning and evaluation of support for children with disabilities: Parents’ and professionals’ perspectives

Abstract

A random sample of parents of children with disabilities (n = 144) from three Swedish municipalities participated in a structured telephone interview including seven questions on child participation and 156 professionals from the same municipalities completed a web-based survey including six questions on child participation. The aim of the study was to explore parents’ and professionals’ (1) ratings of the opportunities available to children with disabilities to participate in planning, decision-making and evaluation of support and (2) satisfaction with the children’s current level of such participation. The results indicated that opportunities for children with disability to participate directly in decision-making processes were limited. Parents and professionals rated older children’s opportunities to participate as better compared to younger. Most professionals relied more on parents’ descriptions of the child’s needs and opinions of support services than on direct communication with the child.

Keywords

children disability participation planning support

Introduction

Studies have emphasized the critical role that adults (e.g. professionals and caregivers) play in children’s opportunity to participate actively in decision-making processes (Coyne, 2008; Gabe et al., 2004; Young et al., 2003). Yet, adults often argue that children are not mature enough to participate in and be held responsible for important aspects of their lives (Atwool, 2006; Coyne, 2008; James and James, 2012). Professionals and caregivers may hold the assumption that they already know what is best for (their) children (Shemmings, 2000). This implies that children’s possibilities for participation in decision-making are dependent on parents’ and professionals’ attitudes, rather than on the child’s competence (Wikström and Fägerskiöld, 2007).

Children with disabilities are more dependent on the care system and support from professionals and are more likely to meet different professionals and face more assessments than children without disabilities (Franklin and Sloper, 2006). A recent study showed that the more involvement children have in the decision-making processes, the more confident they are about expressing their views (McNeilly et al., 2015). It is, therefore, critical that professionals, who have the responsibility to make decisions about support for these children, make sure that children’s own views of their needs and experiences of support are taken into consideration. It is reported, however, that adults often fail to take into account the views and experiences of children with disabilities (For example, Kelly, 2010; McNeilly et al., 2015; Mitchell et al., 2009). Children with disabilities are still rarely involved, for example, in service and support development (Franklin and Sloper, 2006).

One of the obstacles for participation of children with disabilities can be limited face-to-face meetings with professionals (Franklin and Sloper, 2009; Mitchell et al., 2009). Additionally, professionals may question children’s capacity to understand the decision-making process (Franklin and Sloper, 2009) and thus use parents as the substitute for children with disabilities in the decision-making process (Devi et al., 2011). Professionals have reported, for instance, that a child’s age and maturity are the main reasons why direct child participation in planning, decision-making and evaluation of support is difficult to implement (Cavet and Sloper, 2004). It is argued that although caregivers and professionals believe in the importance of child participation, they also question how such participation can be meaningfully implemented with children with complex needs or communication impairments (Franklin and Sloper, 2009). Students with low adaptive and/or social skills as well as those with difficulties with expressive and/or receptive communication, for example, have been found to be less likely to participate in transition planning than less disabled high school students (Griffin et al., 2014). This suggests that adults may feel uncertain about the children’s ability to express their views (Cavet and Sloper, 2004), or themselves have limited access to or knowledge regarding the use of alternative and augmentative communication tools (Hodge, 2007). Thus, some argue that if professionals were given more knowledge and children had better access to alternative communication techniques, children with learning and communication impairments would be in a better position to express their opinions (Mitchell et al., 2009; Rabiee et al., 2005).

The Swedish context

According to articles 12 and 13 of the United Nations Convention on the Rights of the Child (UNCRC; UN General Assembly, 1989), children should be able to participate actively in their everyday lives, including decision-making processes and be given opportunities to describe and reflect on various aspects of their lives. Article 12 states:

States Parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child.

This right of participation also applies to children with disability. According to the United Nations Convention on the Rights of Persons with Disability (UNCRPD; United Nations, 2006), children with disability share the same rights as non disabled children (article 7).

Sweden ratified the UNCRC in 1990 and the UNCRPD in 2008, meaning that participation as described above is a fundamental right of all children in Sweden (The Swedish Agency for Participation, 2014). In Sweden, the Swedish Agency of Participation is responsible for monitoring the practical implications of the Swedish disability policy based on the UNCRPD. However, agencies within the municipalities and county councils have been commissioned to implement the convention within their specific fields (The Swedish Agency for Participation, 2014). Thus, obligations and responsibility for the implementation of the UNCRC and the UNCRPD rest on these agencies. Additionally, the agencies providing support for children with disabilities and their parents are also obliged to follow the national laws and regulations. Some of these laws and regulations are The Health Service Act, (1982), The Social Service Act (2001), The Education Act (2009), The Social Insurance Act (1999) and The Act concerning Support and Service for Individuals with Certain Functional Impairments (1993).

In Sweden, parents have legal responsibility for their children. The rights and responsibilities of parents are legally set out in the Children and Parents Code (1949). According to this Code (chapter 6§2), parents are ‘responsible for the child’s personal circumstances and shall ensure that the child’s needs are met’. It also emphasizes that ‘the best interests of the child shall be the primary consideration in all custody, residence and access decisions’ and aligns with article 12 on the UNCRC ‘the wishes of the child shall be taken into account, subject to his or her age and maturity’ (chapter 6§2a). Thus, agencies providing support for children with disabilities and parents share the responsibility to increase children’s participation.

Swedish studies about participation have mostly focused on children’s participation in school and leisure activities (Almqvist and Granlund, 2005; Eriksson et al., 2007). Additionally, in the latest conclusions and recommendations report by the Committee on the Rights of Persons with Disabilities, the Committee indicated that in Sweden children with disabilities are not systematically involved in decisions concerning their lives and that they lack opportunities to express their opinions on matters concerning them (United Nations Convention on the Rights of Person with Disability, 2014). With the national agenda of moving the issue of children’s participation forward in accordance with the UNCRC and the UNCRPD and the limited research about this matter, there is a need to start investigating how and to what extent children with disabilities are given the opportunity to participate in planning, decision and evaluation of their support. Moreover, given the importance of the role of parents and professionals in advancing the issue of child participation, it is important to consider their attitudes and experience regarding this issue. The aims of the present study were to explore (1) professionals’ and parents’ ratings of the opportunities available to children with disabilities to participate in planning, decision-making and evaluation of support and (2) professionals’ and parents’ satisfaction with the current level of such participation. The four specific research questions were the following:

Do child-related factors such as child gender, age and diagnosis contribute to parents’ ratings of their child’s opportunity for participation in planning and evaluation of support?

How do parents perceive the degree of their child’s participation in planning and evaluation of support services?

How do professionals perceive the degree of participation of children (with disabilities in general) of different ages in planning and evaluation of support services?

How satisfied are parents and professionals with the current level of participation by children with disabilities in planning and evaluation of support?

Method

This study was approved by the Regional Ethical Review Board in Gothenburg, Sweden.

Participants

The parents

Parents of children with disabilities were recruited from three Swedish municipalities: Gothenburg with 550,000 inhabitants, Kungälv with 47,000 inhabitants and Tjörn with 15,000 inhabitants. The inclusion criteria for the parents were as follows: parents of children with disabilities, residing in the three municipalities mentioned above, with a child who was registered as eligible to seek support and services according to the Swedish code of Statutes (1993: 387). In the autumn of 2011, a total of 1004 children living in these municipalities were registered as eligible to seek support and services according to the Swedish Code of Statutes (1993: 387). Of these 1004 children, a 15% sample of the children was randomly selected and the children’s parents were contacted (n = 151) by a social worker from their municipality. A total of 142 parents of children with disabilities (72% response rate) agreed to participate and were interviewed via telephone. In 32 families (29%) both parents were interviewed. The demographic characteristics of the participating parents are presented in Table 1.

Table 1.

Demographic characteristic of the interviewed parents.

Categories	n	%
Gender
Men	47	33
Women	95	67
Country of origin
Sweden	114	80
Other countries	28	20
Employment
Employed	107	75
On parental leave	4	3
Unemployed	5	4
Retired	3	2
Student	12	8
Other	11	8
Marital status
Living with the child’s other parent	102	72
Living alone with the child	25	17
Living with someone other than the child’s other parent	14	10
Living alone	1	1

The children had a wide range of diagnoses such as autism spectrum disorder, intellectual disability, severe attention deficit and hyperactivity disorder (ADHD), cerebral palsy and Down syndrome. Twelve percent (n = 13) were between the age of 0 and 6 years, 39% (n = 43) were between the age of 7 and 12 years and 49% (n = 54) were between the age of 13 and 18 years.

The professionals

We compiled a list of 449 email addresses of professionals in the three municipalities. The inclusion criteria for the professionals were to hold a current position in the agencies working for the municipalities, county council or the state, as well as being involved in providing support to children with disabilities and their families. An email describing the project was sent to these professionals. One week later, a link to a web-based survey was sent. Reminders were sent 3 and 6 weeks later to those who had not completed the survey. Two hundred and twenty-eight professionals completed the web-based survey, but only 149 professionals completed the questions about child participation (total answer rate was 35%). Of those who completed these questions, a majority (85%) had three or more years of college/ university education. Seventeen percent of the professionals worked in preschool/schools, 26% were from the social services, 38% from psychiatry and healthcare, 6% at the national social insurance agency and 13% worked in other organizations. It is important to note that professionals, who participated in the web-survey, were not working with the children of the interviewed parents. This means that professionals’ responses reflect their perception about participation of children with disabilities, in general.

Procedure

The present study originated from a larger research project investigating support to parents of children with disabilities in the south-west of Sweden. Since the primary focus of the project was on parents and professionals, we did not collect any data from the children and accordingly the respondents in this study are parents and professionals. We collected the data through a structured telephone interview with parents and a web survey with professionals.

Twenty interviewers, who were either research assistants or social workers in the social welfare agencies of the municipalities, performed the interviews with parents. To avoid potential interviewer bias when social workers conducted interviews, the questions and the answer alternatives in the interview were highly structured, reducing the risk of interviewer bias. To address this issue further, all telephone interviewers underwent 3 h of training provided by the research group to assure that the interviewers understood and adhered to the interview protocol.

We addressed the potential risks of having professionals working for the municipalities conducting the interviews in two ways. First, the research group asked parents (n = 4) during the pilot testing of the interview whether they would answer differently if the interviewer would be a person working in the municipalities. Second, a few weeks after the interview process started, we performed three focus groups with the professionals conducting the interviews. Parents and professionals indicated that they did not anticipate response bias as the interviews were conducted by the professionals working within the municipality.

The interviews consisted of 59 questions about parents’ perceptions and experiences of support in relation to their children with disabilities within the last 12 months. Of the 59 questions, 7 addressed the issue of child participation. The whole interview took 35–80 min for completion and was conducted with the help of an interpreter, when necessary.

Professionals working as teachers, medical doctors, social workers, dentists, nurses and others completed a web-based survey consisting of 58 questions of which 6 addressed the issue about child participation. The survey included questions about the respondents’ work, perceptions of support available to parents of children with disabilities and collaboration with other organizations.

Measures

The research team constructed the questions relating to child participation, seven questions for parents and six for the professionals. The questions about parents’ and professionals’ perspective on child participation were based on earlier research and the research questions of the study. The questions and the answer alternatives are presented in Table 2.

Table 2.

Questions to parents and professionals.

Categories	Questions to parents	Answer alternatives and scales
Current level of participation in planning	1. How often does your child participate in the planning of support?	1= never, 2 = almost never, 3 = sometimes, 4= almost always, 5= always
Current level of participation in decision-making	2. How often does your child participate in the decision-making process of support?	1= never, 2 = almost never, 3 = sometimes, 4= almost always, 5= always
Current level of participation in evaluation	3. How often do professionals ask your child about his/her opinion of support?	1= never 2 = almost never, 3 = sometimes, 4= almost always, 5= always
Current level of indirect /direct participation in evaluation	4. How do professionals obtain your child’s opinion about support?	(1) By asking the child directly,^a (2) by observing the reaction of the child,^a (3) using parents as interpreter for the child and (4) by asking parent and/or professionals what the child might think
Parents’ wish for the level of participation in evaluation	5. How often would you like your child to be asked about his/her opinion of support?	1= never, 2 = almost never, 3 = sometimes, 4= almost always, 5= always
Parents’ wish for indirect /direct participation	6. How would you like professionals to obtain your child’s opinion about his/her support?	(1) to ask my child directly,^a (2) to observe the reaction of my child,^a (3) to use me/us as interpreter for my child and (4) to ask me/us and/or other professionals what my child might think
Satisfaction on the current level of participation	7. How satisfied are you with the current level of your child’s participation in the planning and decision-making of support?	1= very unsatisfied, 2 = dissatisfied, 3 = neither satisfied nor dissatisfied, 4= satisfied, 5= very satisfied
	Questions to professionals
Face-to-face meeting with children with disabilities	1. How often do you meet children with disability?	1= never, 2 = almost never, 3 = sometimes, 4= almost always, 5= always
Current level of participation in evaluation	2. Do you give children between 0 and 6 years the opportunity to participate in the evaluation of support? Do you give children between 7 and 12 years the opportunity to participate in the evaluation of support? Do you give children between 13 and 18 years the opportunity to participate in the evaluation of support?	1= never, 2 = almost never, 3 = sometimes, 4= almost always, 5= always
Current level of participation in planning	3. Do you give children between 0 and 6 years the opportunity to participate in the planning of support? Do you give children between 7 and 12 years the opportunity to participate in the planning of support? Do you give children between 13 and 18 years the opportunity to participate in the planning of support?	1= never, 2 = almost never, 3 = sometimes, 4= almost always, 5= always
Current level of indirect /direct participation in planning	4. How do you obtain children’s opinions regarding the planning of support?	(1) Report from parents, (2) written communication from the child^a and (3) oral report from the child^a
Current level of indirect/direct participation in evaluation	5. How do you obtain the opinions of children between 0 and 6 years regarding evaluation of support? How do you obtain the opinions of children between 7 and 12 years regarding evaluation of support? How do you obtain the opinions of children between 13 and 18 years regarding evaluation of support?	(1) Report from parents, (2) written communication from the child^a and (3) oral report from the child^a
Satisfaction on the current level of participation	6. How satisfied are you with the current level of child participation in the planning and decision-making of support?	1= very unsatisfied, 2 = dissatisfied, 3 = neither satisfied nor dissatisfied, 4= satisfied, 5= very satisfied

^aConsidered as direct communication with the child.

Child participation was analysed in relation to child gender, diagnosis and age. Three age groups were created: preschool age (ages 0–6 years), school age (ages 7–12 years) and teenage (ages 13–18 years). To evaluate the extent to which parents and professionals perceived that children were given the opportunity to participate directly, the answer alternatives for questions about ways that children participated in planning and evaluation of support were categorized into (a) direct (observing the child, written and oral communication with the child) and (b) indirect communication (using parents as interpreter, reports from parents and other professionals). A measure of the degree of direct communication was constructed and scored as follows: 1= only indirect communication modes, 2 = one direct communication mode and 3= more than one direct communication mode. This procedure was conducted because parents and professionals were able to choose one or more alternatives for these questions. We also compared the report of the parents to those of the professionals.

Analyses

One-way between-group analysis of variance (ANOVA) was used to compare the results on diagnosis and age groups of the children. Paired samples t tests were used to compare the results on the gender of the child as well as between parents report on the current level of their child participation and parents’ wishes. Since the analyses in this article rely on parametric measures, a conservative α level of 0.01 has been used to reduce bias to the results.

Results

No significant differences were found between child gender or diagnosis and parents’ report on the current opportunity for their child to participate in planning, decision-making and evaluation of support. The ‘results’ section is divided into two subsections. The first section consists of parents’ report of the current opportunity for their children of different ages to participate in planning, decision-making and evaluation of support. The second section consists of professionals’ report of the current opportunity for children of different ages to participate in planning, decision-making and evaluation of support. All effects are reported significant at p ≤ 0.01, unless otherwise stated.

The parents’ perspectives

Descriptive statistics of the results are presented in Table 3. Parents were asked how often their child was invited to participate in the planning of support. Parents reported that their child almost never participated in planning of support (M = 2.37 on a scale of 1–5). No significant association was found between parents’ perception of child participation in planning and evaluation of support and child gender or diagnosis. However, parents of teenage children reported more child participation in planning of support compared to parents of school-age and preschool-age children, F(2, 138) = 6.23, p = 0.003, ω = 0.29. Post hoc analyses using Bonferroni indicated that parents of teenage children reported that their child participated more in planning of support compared to parents of preschool-age children (p = 0.01). Significant differences were not found in the report between parents of teenage and school-age children (p = 0.02) and in the report between parents of school-age children and preschool children (p = 0.87).

Table 3.

Parents’ report on opportunity for children to participate in planning and evaluating support services, their wish and their satisfaction on the current level of children’s participation.

	Parents (n = 142)
Questions	Preschool children (0–6 years) (n = 17), M(SD)	School-age children (7–12 years) (n = 56), M(SD)	Teenage children (13–18 years) (n = 68), M(SD)	Total, M(SD)
Current level of participation in planning (scale 1–5)	1.47 (1.01)	2.00 (1.73)	2.90 (1.99)^a	2.37 (1.87)*
Current level of participation in evaluation (scale 1–5)	2.41 (1.37)	2.52 (1.35)	2.72 (1.22)	2.60 (1.29)
Current level of participation in decision-making (scale 1–5)	1.82 (1.67)	2.23 (1.84)	2.82 (1.80)	2.47 (1.82)
Parents’ wish for level of participation in evaluation (scale 1–5)	3.59 (1.50)^c	3.86 (1.31)^c	4.15 (0.90)^c	3.96 (1.17)^c
Current level of indirect /direct participation in evaluation (scale 1–3)	0.63 (0.62)	0.62 (0.67)	0.69 (0.76)	0.65 (0.70)
Parents’ wish for direct participation (scale 1–3)	0.71 (0.69)^c	0.90 (0.71)^c	1.04 (0.66)^c	0.94 (0.68)^c
Satisfaction (scale 1–5)	3.47 (1.23)	3.04 (1.25)	3.37 (1.11)	3.24 (1.18)

*p ≤ 0.01.

^aMore teenage children participate compared to school-age children and preschool children.

^bMore school-age children participate compared to preschool children.

^cParents wish more participation compared to the current level.

Parents were also asked how often their child participated in decision-making regarding support. The results showed that regardless of child age, children only were sometimes given the opportunity to participate in the decision-making of support (M = 2.47 on a scale of 1–5). Parents’ rating indicated that the opportunity for their child to participate in decision-making was not significantly related to age, F(2, 138) = 2.90, p = 0.058.

Parents were asked how often professionals asked their child about his/her opinion/experience of support. According to the parents’ report, regardless of child age, children were only sometimes given the opportunity to participate in evaluation of support (M = 2.60 on a scale of 1–5). Parents’ rating indicated that the opportunity for their child to participate in the evaluation of support was not significantly related to age, F(2, 138) = 0.59, p = 0.055. The results also showed that parents wish that professionals would more often ask their child with disability about his/her opinion of support than they currently do, t(140) = −11,55, p = 0.00, d = 1.11.

Parents were asked how professionals take into account their child’s opinion about support. The parents reported that professionals often use indirect and direct means of communication with the children in the evaluation of support. Parents wished for more direct communication with their child compared with the current situation where professionals often rely on parent’s report of the child’s needs and opinions instead of asking the child himself/herself, t(140) = 4.88, p = 0.00, d = 42.

Parents were also asked how satisfied they were with the current level of their child’s participation in the planning and decision-making regarding support. The results show that parents (M = 3.24 on a scale of 1–5) were neither satisfied nor dissatisfied with their children’s current level of participation. No significant differences were found in the satisfaction level between the parents in the three age groups, F(2, 138) = 1.56, p = 0.21.

The professionals’ perspectives

The descriptive statistics of the results from the web survey are presented in Table 4. Professionals were asked whether they meet face-to-face with children with disability. The result from the professionals’ survey indicated that professionals almost always met face-to-face with children with disabilities (M =4 on a scale of 1–5), regardless of their age, F (2, 367) = 0.334, p = 0.72. Yet, professionals reported that only sometimes children were given the opportunity to participate in planning (M = 3.34 on a scale of 1–5) and evaluation (M =3.09 on a scale of 1–5) of support services. Professionals indicated that older children were given more opportunities to participate in the planning of support services compared to younger children. Teenagers were given more opportunities to participate in planning of support compared to preschool-age and school-age children, F(2, 331) = 31.89, p = 0.00, ω = 0.40. The results also indicated that teenagers were given more opportunity to participate in the evaluation of support compared to school-age children (p = 0.00) and preschool children (p = 0.00). School-age children were also given more opportunity to participate in the evaluation of support compared to preschool children (p = 0.001).

Table 4.

Professionals report on opportunity for children to participate in planning and evaluating support services and their satisfaction on the current level of children participation.

Questions	Preschool children (0–6 years), M(SD)	School-age children (7–12 years), M(SD)	Teenage children (13–18 years), M(SD)	Total, M( SD )
Meeting with children with disability	3.78 (1.30)	3.70 (1.35)	3.84 (1.35)	3.78 (1.33)
Current level of participation in planning (scale 1–5)	2.74 (1.09)	3.39 (1.17)	3.95 (1.10)	3.34 (1.23)*^a
Current level of participation in evaluation (scale 1–5)	2.46 (1.09)	3.17 (1.19)^b	3.68 (1.27)^a	3.12 (1.29)*^ab
Current level of indirect/direct participation in planning of support (scale 1–3)	1.42 (0.64)	2.24 (0.70)^b	2.49 (0.57)^c	2.05 (0.79)*^bc
Current level of indirect/direct participation in evaluation (scale 1–3)	1.61 (0.53)	1.84 (0.49)^b	1.97 (0.41)^c	1.84 (0.49)*^bc
Satisfaction (scale 1–5)	–	–	–	2.92 (1.43)

*p ≤ 0.01.

^aMore teenage children participate compared to school-age children and preschool children.

^bMore school-age children participate compared to preschool children.

^cMore teenage children participate compared to preschool children.

Professionals’ ratings also indicated that older children were given more opportunities to participate in the evaluation of support compared to younger children F(2, 321) = 28.24, p = 0.00, ω = 0.39. Teenagers were given more opportunities to participate in evaluation of support compared to school-age children (p = 0.00) and preschool children (p = 0.005). School-age children were also given more opportunities to participate in the evaluation of support compared to preschool children (p = 0.00).

Professionals rated that older children were given more direct opportunities to participate in planning of support compared to younger children, F(2, 283) = 74.47, p = 0.00, ω = 0.59. Teenagers were given more opportunities to participate directly compared to preschool children (p = 0.00) and school-age children (p = 0.00). No significant differences were found between teenage children and school-age children in professionals’ ratings of opportunities given to direct participation in planning of support (p = 0.02).

Professionals rated that teenage children and school-age children were more often given opportunities to participate directly in evaluation of support compared to preschool-age children, F(2, 231) = 10.44, p = 0.00, ω = 0.29. Post hoc analyses using Bonferroni indicated that opportunities to participate directly were reported as lower for preschool children than for teenage children (p = 0.00) and for school-age children (p = 0.008). But significant differences were not found in professionals’ ratings on opportunities to participate directly in evaluation of support between teenage children and school-age children (p = 0.22). The results show that professionals (M = 2.92 on a scale of 1–5) were neither satisfied nor dissatisfied with the current level of child participation.

Discussion

Face-to-face meetings with children can be a starting point to enable child participation in planning, decision-making and evaluation of support. Nevertheless, it does not guarantee that children will have the opportunity to participate directly. Professionals in the present study reported that they often meet face-to-face with children regardless of the children’s age. However, professionals also indicated that children were not always given the opportunity/invitation to participate in the planning and evaluation of support. Additionally, the results from the parents indicated that the opportunities for children to participate in the planning and evaluation of support were limited to indirect means such as the professionals asking the parent about the child’s opinion. Previous studies (e.g. Cavet and Sloper, 2004; Martin et al., 2006; Sinclair, 2004; Wagner et al., 2012) found that despite the opportunity for children to be present in meetings with professionals, active child participation may not occur. The results from the present study extended this finding: although children are often invited to be present in meetings with professionals, they may not be given the opportunity to participate directly. This might be due to factors such as the child’s functional level as found by Griffin et al. (2014) in their study of youth with autism and their involvement in transition planning.

In line with McNeilly et al. (2015), the present study also found that the child’s age to some extent guides parental and professionals’ views of a child’s ability to participate in planning, decision-making and evaluation of support services. Professionals in the study often communicated directly with the child but also used parents as interpreter for the child; however, parents wished that professionals would communicate with their child directly. This might be an indication that parents want their children to be acknowledged and more involved in planning, decision-making and evaluation of support in accordance to The Children and Parents Code (1949). At the same time, professionals’ reliance on parents’ report could indicate an uncertainty about children’s ability to express their views (Cavet and Sloper, 2004) and/or about how to communicate with children with disabilities, a possible indication of a lack of tools and/or knowledge about flexible and adaptive modes of communication. This may be the result of inadequate skills, knowledge and limited resources on the part of professionals as reported in previous studies (Kelly, 2005; Mitchell et al., 2009). Knight and Oliver (2007) found that professionals often face the dilemma between acting in the ‘best interests’ of the child and advocating for the child. This dilemma has also been found to contribute to the limited opportunities for children with disabilities to participate in decision-making processes. Concurrently, these results may also be an indication that parents and professionals do consider the child’s age and maturity according to the UNCRC. It may reflect parents and professionals fulfilling their obligations as mature, knowledgeable and responsible adults – their sense of responsibility to provide for and protect children with disabilities by ensuring that the children get the support services they need and are entitled to.

Both parents and professionals were neither satisfied nor dissatisfied with the level of children’s participation, calling into question parents’ and professionals’ views on this matter. Professionals’ and parents’ uncertainty regarding limited child participation could relate to uncertainty about children’s ability to express their views, about how to communicate with children with complex needs or communication impairments. It could also relate to uncertainty about the capacity for children to understand that their participation does not necessarily mean that they have the power to decide on certain matter as discussed above.

According to the UNCRC, children have the right to be viewed as active citizens. Thus, it is essential to remove barriers such as attitudes and lack of knowledge and implement appropriate tools/technology to make child participation possible (Morris, 2009). Yet, children of certain ages or with certain disabilities may not have the cognitive capability to fully understand the impact and result of decisions on their daily life and future and potentially also on their family members. By promoting child participation, we may promote child development, confidence and understanding of their own needs (Cobb et al., 2009; Sinclair, 2004) and improve outcomes for the child (Cobb and Alwell, 2009). At the same time, it is important to keep in mind that adults and children often have different views on many things, for example, the time horizon for interventions. Children can have more of a ‘here-and-now focus’, while adults tend to consider what is best for the child in the long-term. Consequently, both the adult and child perspectives are important and should be given equal attention in planning and evaluation; childhood is an important part of life in itself, and not merely a preparation for adult life (Stenhammar, 2009).

The UNCRC and the UNCRPD can be viewed as tools to promote the rights for children to express their opinions in matters concerning them and, as such, has great influence in pushing the issue of child participation forward. The UNCRC, article 12, includes the requirement of mental capacity for children to act and exercise their rights. This means that children have the right to express their opinion and their opinions can be taken into account, yet the judgement about the child’s mental capacity still lies with the adults (Dinerstein, 2011). Bach and Kerzner (2010) argued, however, that the question of mental capacity of children with disability should not be a central issue. The central issue should rather be to provide children with disabilities the opportunities to be heard and to thereby be able to exercise their right to influence and participate in planning, decision-making and evaluation (Axelsson et al., 2014; Dunst et al., 2001; Hammel et al., 2008).

To get insight into children’s perception and to improve children’s participation, professionals, parents as well as children must be involved in the decision-making process. Children with disabilities need to develop relationships, feelings of security and confidence in those whom they are working with (Murray, 2015). At the same time, professionals and parents need to provide them with the opportunity to be as involved as possible throughout the decision-making process (Franklin and Sloper, 2006; Högberg, 2007; Sinclair, 2004). Thus, the issue of child participation may need to be seen as a balancing act between children’s, parents’ and professionals’ perspectives. Participation of children with disabilities in decision-making processes does not mean leaving children to make their own decision about support. The focus should rather be on finding ways to (a) support children to describe their perspective, (b) support children to develop skills and understanding of their rights and responsibilities and (c) support children to understand the process of decision-making.

Limitations

This study has several limitations that warrant consideration. First, it focuses on child participation, but the voices of the children themselves were not represented. This is because the overall focus of the larger research project was to study support for parents of children with disabilities. The research project did not include children (and did not have the ethical approval to include children) and therefore the present study does not have data from the children themselves. Second, the word ‘participation’ was not explicitly defined for the parents or professionals and may have been open to interpretation. Professionals, for example, can view children being present in the meeting as participation. Third, parents’ descriptions and reports of their children’s participation were necessarily individual and specific, whereas the professionals were asked how they generally worked with children of different ages. Fourth, the study did not address the practical limitations that professionals and parents encounter in the meetings or how parents and professionals would want to work with the issue of child participation further. Finally, there was a low response rate among professionals, which means that the results from the professionals in this study are susceptible to non-response bias.

Practical implications

Despite its limitations, this study can serve as a starting point to discuss and reflect on professionals’ readiness to create opportunities for children with disabilities to participate more directly in decision-making processes. There is an obvious need for development of different ways to promote child participation in planning, decision-making and evaluation of support. To promote children’s active participation in decision-making processes, professionals and parents may need to develop strategies and support children to communicate their will, to make active choices and decisions and take responsibility for these. Aligned with the suggestion by Held et al. (2004), professionals may also need to adapt/modify communication materials in order to communicate with children at various cognitive levels. In this process, professionals and parents may need support, for example, more knowledge and skills in talking to children and on how to use different types of alternative and augmentative communication means – such tools should also be available for professionals in the support agencies.

Like Griffin et al. (2014), we also would like to encourage professional–parent–child partnership in promoting child participation. This is especially vital as support might be directed not only towards the needs of the child but also towards the needs of the parents. Information and forms including topics that will be addressed in meeting with professionals, for instance, could be sent to the families so that parents and their child with disabilities can prepare ahead of time.

Footnotes

Acknowledgements

We would like to express our appreciation to all the parents and professionals who shared their time and experiences with us in this research project. We would also like to thank the professionals who interviewed the parents.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was supported by Swedish National Institute of Public Health.

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