Psychiatric care of children with autism spectrum disorder – What do their siblings think about it? A qualitative study

Abstract

The expectations and role of families in the care of children with autism spectrum disorder are increasingly important. Nonetheless, no study has thus far explored the perspectives of siblings about the care received by a brother or sister with this disorder. The objective of this study was to fill this gap in the literature. This multicentre qualitative study took place in France, where we conducted semi-structured interviews with adolescents who were older siblings of children receiving care in a day hospital for an autism spectrum disorder. Data collection by purposive sampling continued until we reached ‘theoretical sufficiency’, and data analysis was thematic. The study included 20 participants: 13 sisters and 7 brothers. Four themes emerged in the data analysis: (1) the treatment targets, (2) the treatment’s perceived effectiveness, (3) the complex questions it raises and (4) the role of intrafamily relationships. Our results allowed us to report original aspects of the experience of siblings, in particular, their confusion with regard to the treatment, their difficulty in separating themselves from their parents’ discourse and their assertion of their role as caregivers for their younger brothers and sisters.

Keywords

autism spectrum disorders psychiatry qualitative research siblings

Introduction

Autism spectrum condition and proxy-reported outcomes

The landscape of conditions on the autism spectrum disorder (ASD) has undergone important changes in recent years. Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-V) regrouped all of the pervasive developmental disorders into the single category of ASD, which contains all developmental conditions that combine difficulties in social communication and interaction and restrictive, repetitive patterns of behaviour, interests or activities with a very broad spectrum of behaviours and of severity (American Psychiatric Association, 2013). Moreover, the most recent epidemiologic studies show that the prevalence of this condition continues to rise (Idring et al., 2015), due especially to improved diagnostic methods. Other important advances involve its aetiology, with the demonstration of the role of genetic, epigenetic and environmental factors (Fakhoury, 2015; Shulha et al., 2012) but also its clinical aspects, with the recent work on self-injury and on the ASD-associated anxiety and obsessive-compulsive disorders and symptoms (Courtemanche et al., 2016; Ming et al., 2008).

From the perspective of treatment, changes have occurred on two levels. On the one hand, professionals are using an integrative approach combining educational, behavioural and pharmaceutical management; specifically, they propose evidence-based treatment options that offer the best possible outcome for the child and the family (Lounds Taylor et al., 2012; Weitlauf et al., 2014). On the other hand, the parents’ expectations occupy a central role in treatment; the treatment choices are increasingly made in a process of shared decision-making (Levy et al., 2016). This is the case in France, where the most recent recommendations by the National Authority for Health, the body responsible for clinical practice guidelines in France, insists, especially in this field, on the role of the family and in particular its involvement in care, so that it ‘can participate in sessions if it wishes or receive specific support and training’ (Haute Autorité de Santé (HAS), 2012). This new parental role in ASD treatment is paradigmatic of the societal evolution of the role of patients in medicine and of parents in paediatric fields (Truog, 2012). A new research field has developed around patient-reported outcomes (PROs) and proxy-reported outcomes (Patrick et al., 2008): these quantitative or qualitative studies seek to explore how patients and their families experience their medical care and to understand their perspectives about the benefits of treatment and about the outcomes important to them. Qualitative methods are useful in this context, aiming as they do to describe and understand complex phenomena in greater depth. They are thus a tool of choice for focusing on the perspectives of participants (Revah-Levy et al., 2007). The literature includes several studies, principally qualitative, reporting the perspectives of parents and professionals (Gona et al., 2015; Minhas et al., 2015) about the treatment of patients with ASD. Nonetheless, to our knowledge, no study has explored the perspectives of siblings on what they think and how they perceive the treatment of their brother or sister with ASD.

ASD and siblings

The literature about the siblings of children with ASD is relatively substantial. Several quantitative studies have looked at the psychological effects on these siblings and reached different conclusions. Some studies suggest functioning close to that of the siblings of typically developing children (Macks and Reeve, 2007), while others report more behavioural and emotional problems as well as more relational difficulties (Hastings and Petalas, 2014; Orsmond and Seltzer, 2007). Some authors consider that the effect on siblings is correlated especially with ASD severity (Hastings, 2003), and others have underlined the relational and communication issues between siblings and the child with ASD (Ross and Cuskelly, 2006; Sage and Jegatheesan, 2010). Some studies thus insist on the importance of targeted interventions to support siblings (Tsao et al., 2012) and help them to better understand the problems of their brother or sister with ASD (Lovell and Wetherell, 2016).

It is around these experiences of siblings living with a brother or sister with ASD that the qualitative literature has developed. All these studies find contradictory, mixed experiences, with simultaneously negative elements of growing up with a sibling with ASD (exposure to frightening behaviour, physical violence, less parental attention, feelings of guilt and shame, social isolation and worries about the future) and positive aspects (development of empathy, an early sense of responsibility, loving their brother or sister and realising the experience was life-changing) (Benderix and Sivberg, 2007; Latta et al., 2014; Petalas et al., 2012; Ward et al., 2016).

Numerous studies have also shown the advantages – for both the sibling and the child with ASD – of involving the siblings in the care (Ferraioli et al., 2012; Mandleco and Webb, 2015). Interventions at home, for example, have a behavioural effect on siblings (Grindle et al., 2009; Hastings, 2003), who are described as desirous of information and education about autism and willing and eager to participate in the treatment of their brother or sister with ASD. Many authors have also demonstrated the value of teaching typically developing siblings the skills needed to participate in the treatment and have proposed sibling-mediated behavioural approaches, in particular, around play (Celiberti and Harris, 1993; Ferraioli and Harris, 2011; Oppenheim-Leaf et al., 2012).

In France, the involvement of the entire family in psychiatric care is an important public health and policy issue (Hochmann, 2013). Nonetheless, to our knowledge, no French study has examined the involvement of siblings in this care, and no qualitative study has explored what they know and think of the treatment received by their brother or sister with ASD. In a family-centred approach, however, the point of view of the entire family, siblings included, should be taken into account (HAS, 2012). The objective of this study was therefore to explore, by a qualitative method, how older siblings describe and perceive the care received by their brother or sister in child psychiatric centres specialised in the management of children with ASD. The point is to identify perspectives that will help improve the support provided to families to reduce their distress (or burden) and help them adjust to and deal with the child with ASD as well as possible.

Methods

Setting

Our exploratory multicentre study took place at two hospital departments in the Paris suburban area providing care for children with ASD. Both departments use an integrative approach and have a day hospital. Each child attends for 4–6 half-days a week, with an individual schedule based on their needs. This schedule combines individual and group educational, pedagogical and treatment activities. Depending on their communication profile, the children learn especially to use the Picture Exchange Communication System (PECS) or Makaton (communication- and language-assistance programme, made of a functional vocabulary). Table 1 describes the characteristics of the 2-day hospitals. Most of the children have additional care outside the day hospital, in particular, occupational and speech therapy. Both units work systematically with the families (monthly family meetings, semi-annual meetings with the supervising physician to discuss and sign an individualised treatment plan, home visits and parent support groups). The council for the evaluation of ethics in health research (Consumers for Ethics in Research (CERES)) of the University of Paris-Descartes approved this study. The participating siblings and their parents provided written consent before inclusion. This study complied with the consolidated criteria for reporting qualitative research (COREQ) guidelines (Tong et al., 2007) (Supplementary material).

Table 1.

Day hospital characteristics.

	Day hospital 1	Day hospital 2
Number of children in treatment	30	20
Age of children	4–12 years	4–12 years
Duration of care	1–8 years	1–8 years
Number of professional participants (full-time and half-time)	30 (psychiatrist, psychologist, occupational therapist, nurses, art-therapist, specialised educators, social worker, specialised teacher)	22 (psychiatrist, psychologist, occupational therapist, nurses, art-therapist, specialised educator, social worker, specialised teacher)
Therapy groups	Music, Snoezelen (controlled multisensory stimulation), theatre, storytelling, physical and vocal expression, therapeutic meal, gymnastics, hygiene and autonomy	Music, storytelling, physical and vocal expression, cooking, excursions, swimming, therapeutic meal, gymnastics, judo, hygiene and autonomy
Individual interventions	Individual cognitive therapy, occupational therapy, medical consultation	Individual cognitive therapy, occupational therapy, medical consultation
Schooling within the day hospital	Class time with specialised teacher (TEACH method) External education unit (EEU) (class for eight children with ASD 5 half-days a week at an elementary school) Inclusion in standard classes part-time, according to individually assessed ability	Class time with specialised teacher (TEACH method) Inclusion in standard classes part-time, according to individually assessed ability

Sampling and participants

Sampling was purposive (Patton, 2001), that is, selective and deliberate. The researchers explained the study design and objective in detail to the clinical coordinator of each centre. These clinicians then identified the families with siblings that might fit our inclusion criteria and who appeared to them likely to provide the most information about the phenomenon under study; in this respect, the sampling was selective and deliberate.

These inclusion criteria was as follows: typically developing boys or girls speaking fluent French, aged 12–18 years, with a younger sister or brother treated in the department’s day hospital for at least 1 year for severe ASD (level 3 according to the DSM-V criteria (American Psychiatric Association, 2013).

The exclusion criteria were as follows: history of chronic psychiatric or somatic disorders, presence of an acute psychiatric or somatic disorder or families with major dysfunctional patterns, such as neglect or abuse.

It was possible to include more than one sibling of a single patient if they met our inclusion criteria. We limited our sample to this level of severity and to day hospital care for reasons of feasibility and also to obtain a homogeneous sample that would enable us to explore our research question in depth (Smith et al., 2009). Similarly, we chose to explore the points of view only of adolescent older siblings to capture a homogeneous experience and to have participants with a capacity for expression and verbalisation that could yield rich data.

The clinicians first mentioned the study to potential participants and gave them an information sheet about it. They also verified compliance with the inclusion and exclusion criteria and in particular the absence of any condition in the older sibling. If they were interested, a preliminary meeting took place, in which the researcher spoke with the teen and his or her parents to describe the study to them and obtain their written consent. This preliminary interview also provided the occasion to collect social and demographic data and to facilitate the subsequent research interview.

Data collection

Data came from semi-structured interviews, conducted in French, with an open-ended approach. The interviewers used an interactive conversational style and an interview guide (Table 2). The researchers sought to enter the interviewees’ psychological and social world and to remain open and attentive to any unknown issues that they might introduce. The participants were considered to be the experts on their own experience, and the interviews were intentionally conducted in a way that offered them the opportunity to recount it. Each interview lasted from 60 to 90 min. They were conducted by two experienced researchers (J.S., a male child psychiatrist and L.C., a female child psychiatrist; their occupation was known by the participants), from September 2015 to March 2016. The interviews have been anonymised. They were recorded and transcribed literally, to include the participants’ expressive nuances (e.g. pauses, emphases and nonverbal signs). The transcript thus obtained was then analysed.

Table 2.

Interview guide.

1. How long has your sibling had this condition? How was it discovered?
Prompt: How was it explained to you?
Prompt: What did you understand about it?

2. How long has he or she been in treatment? What treatment did he/she received and what treatment is he/she receiving now?
Prompt: How have you experienced and understood these treatments?
Prompt: what treatment options were proposed?

3. What do you think was effective? What helped him/her? And on the contrary, what was not effective?

Our sample size was determined according to the principle of theoretical sufficiency (Dey, 1999). That is, data collection and analysis were deemed complete when the researchers determined that the themes obtained offered a sufficient explanatory framework of the data collected. In practice, we considered that we had reached theoretical sufficiency when the analysis of new data no longer changed our results, that is, when two consecutive interviews produced no new themes.

Analysis

We used thematic analysis to explore the data (Braun et al., 2014). This method enables the identification, analysis and reporting of the themes within the data. A theme can be defined as a label that summarises the essence of a number of related codes. Our thematic analysis was data-driven and used a phenomenological inductive approach: a process of coding the data without any reference to theoretical notions or researcher’s preconceptions. All interviews were audio-recorded, transcribed verbatim and analysed. Before analysis, the interviewers checked the transcripts for accuracy against the tapes. Individual transcripts were next read repeatedly and then coded to identify initial themes, which were annotated in margins. This was close to being a free textual analysis. Each reading had the potential to bring up new insights. Recurrent themes were then identified across transcripts; they reflect a shared understanding of the phenomena in question among participants. This stage involved a more analytical ordering, as researchers tried to make sense of the connections between themes and cluster them in ranked categories.

Table 3 summarises the different stages of our thematic analysis. This process was dynamic and iterative, with each new transcript leading to the collection of additional data and to their subsequent analysis. The objective was to recognise and identify the similarities and the differences between the accounts of each participant. The researchers were thus led to discern the recurrent patterns but also to integrate the new issues that emerged from the analysis.

Table 3.

Process of inductive thematic analysis.

	Activities	Rationale
Stage 1	Repeatedly read each transcript, as a whole	Obtain a global picture of the interview and become familiar with the interviewee’s verbal style and vocabulary. Each new reading of the transcript might also provide new perspectives.
Stage 2	Code the transcript by making notes corresponding to the fundamental units of meanings.	Make descriptive notes using the participant’s own words. Pay particular attention to linguistic details, such as the use of metaphor.
Stage 3	Make conceptual notes through processes of condensation, abstraction and comparison of the initial notes.	Categorise initial notes and reach a higher level of abstraction.
Stage 4	Identify initial themes. Provide text quotes that illustrate the main ideas of each theme.	Themes are labels that summarise the essence of a number of related conceptual notes. They are used to capture the experience of the phenomenon under study.
Stage 5	Identify recurrent themes across transcripts and produce a coherent ordered table of the themes, gathered into domains of experience.	Move from the particular to the shared across multiple experiences. Recurrent themes reflect a shared understanding of the phenomena among all participants. During this more analytic stage, researchers try to make sense of the associations between the themes found.

Three researchers (J.S., L.C. and A.R-L.) independently performed this analysis with Nvivo 11 software to ensure its validity by improving its relevance and consistency. Each researcher analysed interview independently according to the process described. These analyses were pooled during regular meetings of the research group that finally led to the thematic organisation of the results. Debate about disagreements on the inclusion or exclusion of a theme or about its title continued until a consensus was reached.

In the results below, extracts of respondents’ verbatim accounts have been chosen to exemplify the theme described. All identifying information has been removed, to protect confidentiality. The verbatim account has been freely translated into English for the sole purposes of this article; the main objective of the translation is to preserve the essential meaning and content while respecting all nuances.

Results

The study included 20 participants: 13 sisters and 7 brothers. These siblings’ ages ranged from 12 to 18 years and averaged 14.1 years. Each was a brother or sister of one of 19 children with severe ASD aged 5–11 years; both a sister and a brother were included for one child with ASD. In all 19 families, the child attending the day hospital was the only family member with ASD. The duration of psychiatric care ranged from 22 to 108 months, with a mean duration of 60.6 months. Table 4 summarises the participants’ characteristics.

Table 4.

Characteristics of participants.

	Gender	Age	Age of child with ASD	Comorbidities of the child with ASD	Family status	Treatments in the addition to the day hospital for the child with ASD
P1	F	14 years	9 years		Married parents	Pharmaceutical treatment (Tercian)
P2	F	12 years	8 years	Moderate Intellectual disability	Separated parents	Occupational therapy
P3	F	12 years	9 years		Separated parents	Occupational therapy, pharmaceutical (Tercian)
P4	M	14 years	5 years		Separated parents	Occupational therapy, psychotherapy, speech therapy
P5	F	12 years	9 years		Cohabiting parents	Speech therapy
P6	F	15 years	9 years	Moderate Intellectual disability	Married parents
P7	F	16 years	6 years	Moderate Intellectual disability	Married parents	Occupational therapy
P8	F	13 years	5 years		Separated parents	Occupational therapy, psychotherapy, speech therapy
P9	M	12 years	8 years	Profound Intellectual disability	Married parents	Speech therapy, occupational therapy
P10	F	13 years	8 years		Married parents	Speech therapy, occupational therapy
P11	M	14 years	8 years	Astigmatism	Married parents	Speech therapy, occupational therapy, psychotherapy
P12	M	16 years	9 years	Duplication 15q13.3, sensorineural hearing loss	Separated parents
P13	F	12 years	10 years		Married parents	Speech therapy
P14	F	13 years	10 years	Polycystic kidneys, hepatic haemangioma, HNF1 and TCF2 deletion on chromosome 17	Cohabiting parents
P15	M	14 years	10 years	Polycystic kidneys, hepatic haemangioma, HNF1 and TCF2 deletion on chromosome 17	Cohabiting parents
P16	F	18 years	9 years		Separated parents	Speech therapy
P17	F	15 years	9 years		Cohabiting parents
P18	M	16 years	10 years	Moderate Intellectual disability	Married parents	Pharmaceutical treatment (Tercian)
P19	M	15 years	9 years		Separated parents	Speech therapy, psychotherapy
P20	F	17 years	11 years		Married parents

ASD: autism spectrum disorder.

In all, we asked 23 siblings to participate; all initially agreed, but 3 changed their mind before the interview, explaining that the subject was too complex or its emotional burden too great.

Four themes emerged in the data analysis: (1) the treatment targets, (2) the treatment’s perceived effectiveness, (3) the complex questions it raises and (4) the role of intrafamily relationships.

The treatment targets

The siblings described three treatment targets based both on their understanding of ASD and on their worry and emotional distress for their younger sibling: language, social aspects and the child’s future.

Language

The question of language had a major place in the adolescents’ discourse. They considered that disorders of language and communication were the defining characteristics of ASD.

In fact, autism is when you don’t talk, except when you yell; you cannot talk normally. (P2)

They also expressed sadness and worry that they could not communicate with their brother or sister.

Sometimes he looks at you like that; I tell myself: he really wants to talk to me, but no; he looks at me after, he turns away. It makes me cry. (P6)

Accordingly, they considered that improved communication capacity and the acquisition of language should be the first target of treatment for ASD.

(What do you expect from the treatment, then?)

P4: What I really want, it’s that later he can talk. I don’t know if they can do that but that should be the thing where they put their energy.

Social aspects

The adolescents considered that social aspects are very important for their siblings’ condition. They thought treatment ought to seek to reduce the difference between others and children with ASD and help them to cope with the stigmatisation.

The participants thought of their brother/sister as different from others and were sad about it.

The fact that he’s autistic, that hurts me a little bit. That he’s different. (P8)

They often referred to ideas of normality to express simultaneously that their brother/sister was ‘normal although different’ but also that he/she was not normal, not like others.

They acted as if he were someone normal … finally, normal, in quotes. (P7)

The adolescents expected that this treatment should improve their siblings’ social skills and autonomy and reduce their differences with others.

I would like them (the staff) to help him be more like others, so that it’s easier for him with the others. (P19)

They were also sensitive to their siblings’ stigmatisation.

It makes me sick that they (the other children at the school) say things like that about him. He’s not like that on purpose. After, they say, like, ‘don’t let him near me’, all that, ‘he’s drooling, it’s disgusting’. It’s irritating, and a little sad too. (P9)

They felt that treatment should enable the child to be better integrated within the social world. They thus thought treatment should aim for a return to school for the children currently in day hospitals and, at another level, promote better acceptance by society of ASD children.

The doctors should also take care of that, make it so that people stop attacking them and insulting them (…).What good is it to help them in the hospital just inside the hospital if it’s so they can be insulted outside? (P19)

The future

The interviewees were not worried about their siblings’ present situation but for their future. Many essentially said that they ‘lived with’ the disorder, were used to it, no longer paid attention and forgot the symptoms. Some even described a positive feeling or relativised the situation.

We don’t have a family like everyone else’s (…) So I’m not like a normal family, but that’s OK, it’s not serious. (P1)

They thus mainly concentrated their worries on the future of their brother/sister. They expressed their fears about the lack of any solution or improvement.

If there’s nothing to cure them, they might never learn correctly. (P9)

Many of the participants did not think any recovery was possible, while other thought symptoms could improve at least in part.

A cure, maybe, if he could succeed in talking, not really talking but say several words already, for me that would be a great recovery, and maybe also write and do all the things, all the things you do every day, by himself. (P13)

The adolescents also feared challenges for future care, both in specialised facilities and at the family home.

Because I know that if he is not toilet-trained, for example, it will be harder to manage later, when he’s bigger … even if he is already big. (P6)

They thus believed that it was essential that treatment focus more on the future than the present, on the long term rather than the moment.

But is what he does at the day hospital going to be useful for later? Because if not, it’s not worth anything, is it? (P18)

Perceived effectiveness of treatment

All of the teens were able to list the different treatment activities offered to the children at the day hospital. They could also describe the professions of the different staff participating in this treatment or even mention the use of communication tools, such as pictograms. They perceived both positive and negative effects of the treatment.

When treatment was effective

Globally, they had a positive experience of their sibling’s treatment: many considered it as a pleasant time that the child enjoyed.

I’m glad because at least she is getting treatment. It’s positive that they are helping to improve her condition. Yes, it’s positive. (P10)

Nearly all the participants reported positive effects that they attributed to the treatment: improvement in behaviour, ability to do more things, improvement in language comprehension and expression and better autonomy in the activities of daily living. These markers of effectiveness matched the treatment targets identified by the older siblings.

For me, the biggest progress, it’s speaking. Before, he couldn’t even put two words together and now, he says a whole sentence. (P14)

They attributed this effectiveness principally to the educational and learning aspects of treatment, to the permanent presence of large numbers of adults around the children and also to the fact that the child might discover new things, open themselves up to the world and enjoy themselves. The soothing function of treatment was mentioned often.

What is working, it’s that every weekday he goes and they teach him, they do what they have to teach him (…) Like that, he learns things that there aren’t at home. (P20)

I can’t really say what they do here but they always find a way to calm him. (P19)

When treatment was ineffective

On the contrary, some participants perceived the treatment as ineffective, and even harmful: no improvement or insufficient progress or the return of behaviours that had disappeared.

What they do here doesn’t work; sometimes he’s even worse, or acts like a baby. (P12)

Some thought that their sibling was better at home than at the hospital and that he or she had behaved better before starting this treatment.

In the afternoon he’s too excited. As he has finished all his activities, he’s excited, and the weekend he’s not excited, he’s normal. (P8)

A recurrent criticism of the treatment concerned its density. Some participants considered that it was too dense, thus tiring and overexciting the child and reducing the time they could spend together.

When he gets back from the day hospital, it’s late and we can’t play. (P9)

Others, on the contrary, thought that treatment was not dense enough, that more needed to be done, that treatment should be more regular and more frequent, the time at the day hospital more completely filled and sessions with speech therapists and psychologists longer. They also thought more dense care would relieve the family.

(about psychotherapy sessions): Later, I found out that he doesn’t stay there very long. It was too short for him (…) he needs several sessions. Because it was once a week, and for 30 minutes, I think. That was too short for him. (P19)

After, us too, that will make it easier for us at home, let’s say. For example, to not see him anymore, let’s say, we will see him maybe only two or three times a day, and we will have more possibilities, in quotes, let’s say. (P10)

Complex questions raised by treatment

The adolescents’ discourse about their siblings’ treatment led them wonder about complex questions to which they often had hesitant, even contradictory, and above all confused responses. These questions concerned the status of their sibling as a person with a disability or disease or condition, the specific role of each staff person and the distinction between caring for the child and teaching him or her.

‘Is my sibling “sick”?’

The participants wondered about the status of ASD as a disease. Some did not see their brother/sister as ill, others did consider ASD as a disease, while most had doubts and did not know where to place what they called a problem or a disability or a condition.

I don’t know if it’s a disease but it is a disability because they have a weakness, they have difficulties for some things, but at the same time intelligence for other things. (P20)

They also found it difficult to define the specific role of each staff member. Their titles, their names and their functions were very often confused. The participants globally attributed the same role to all day hospital staff: to play with their sibling and teach him/her new things.

The only distinction they identified concerned physicians for the body and those specialised in developmental disorders – who were differentiated by their skills and field of expertise – the body for the first group and the mind for the latter (Q25).

But not the doctors, like when you’re sick, it’s doctors like for people who have difficulties like he does. (P4)

‘Is teaching treating?’

The distinction between treating and teaching appeared especially vague in the discourse of our interviewees. Treatment in the day hospital was described as involving ‘pedagogical activities’, the aim of which was above all to teach the children new things.

it’s activities, but there is also a paedagogical purpose, I think, that I don’t know (…) For example, let’s say, if he comes here and he only eats cereals, for example, that can make him discover other things. And the pedagogical aim, that would be that he learn to eat other things besides cereal, for example. (P7)

The adolescents talked about it as a place where people are treated and where they are taught, simultaneously or separately. Moreover, most of the participants used school-related vocabulary to talk about the day hospital: courses, classes, play-time, students and so on. Some even defined the day hospital as a school for those who do not know how to talk well.

(When you say school, it’s here?)

P16: Yes. No. Well, it is a hospital, but I’m used to saying school. It’s more like a school for children like him.

Only a few specifically distinguished between the school and the day hospital. Those who did attributed different objectives to each: school for learning and preparing the future and the hospital for talking and receiving help.

A hospital, it’s for autistic people to help them, school is have a profession or an occupation later. (P14)

Intrafamily relationships

Although the interviewer asked about care, these siblings recurrently returned to talking about intrafamily relationships and associated them with their overall description of the care of their brother or sister with ASD. Intrafamily relationships played a major role in what the participants had to say. They mentioned especially their own sibling relationships and the relationship between the child with ASD and the parents, but talked little about their own relationships with their parents.

Their relationship with the sibling with ASD

They described two different relational patterns with this ASD sibling: one a classic sibling relationship and the other a relationship involving helping or providing care.

On the one hand, the participants stressed the moments and even the pleasure they shared with their brother/sister or as a family.

I always stayed with him, I gave him lots of kisses and hugs all the time and my best memories with him are when we stayed in my bed and we played together and even recently he continues to do that, come to my bed, and we play together. (P17)

They described benevolence towards and attachment to the child, but could simultaneously mention rivalries and jealousy, especially because the younger sibling received more attention or because the family tended to be organised around him or her. Participants also complained about their siblings’ annoying and irritating behaviour, without ever connecting it to the ASD.

I was jealous of him, and each time he was sleeping, I would throw things at him, everything I found, and I threw things at him (…) I wanted to be my mother’s pet, and he was because he’s the youngest. (P10)

On the other hand, they described above all else their role as a helper, even a carer. They explained that they were present to help their sibling in the tasks of daily life and to take care of him or her when their parents were unavailable.

It’s just, I’ll say, sometimes, as he has certain problems, shall I say, I have to change him. That’s all. Otherwise, it doesn’t bother me too much. (P8)

So this year at least there were at least 10 times that he didn’t go to the hospital. As a result, either I don’t go to school, or I miss school in the morning, to stay with him, because him, alone in the house, it’s not possible. (P6)

Sometimes, the participants played a carer’s role: they sought to teach the sibling with ASD to talk or to write, to behave better, to know how to do things; they could also sometimes give them their medication.

In fact before, I had made a picture, and I had started to write the letters of the alphabet, the numbers, and his first name. (P1)

They also projected themselves into their future caregiving roles, in adulthood.

Later he will surely come to live with me, when our parents are too old to take care of him. (P17)

The relationship between the child with ASD and the parents

The siblings stressed the mother’s dominant role in the relationship with this younger sibling, while very few mentioned their father’s role.

They observed the closeness between their sibling and their mother. They mentioned her dominant role in the organisation of care and expressed some worry about her and her sacrifices for the child with ASD.

He was more attached to Mama, he didn’t want to let go of her. Sometimes he’s unhappy because she doesn’t come. (P2)

But imagine if we don’t find {a place for him for next year}, my mother, she won’t be able to go to work. My mother, she didn’t work for at least a year, I think, when I was born. (P9)

Some participants suggested that a separation between their mother and their sibling might be beneficial.

What could help him is a hospitalisation, like a week without Mama. He has already done it. And when he came back, he fussed a little more, because he hadn’t seen Mama for a long time. He went to the pool. He had activities. He cooked, too. He seemed happy. And when he came back, he started to fuss (…) It’s positive, because he let her go a little. (P18)

The relationship between the older siblings and their parents

The participants spoke little about their own relationships with their parents. When they did mention it, they also described their position as a helper, a support. They took care of their sibling to allow their parents to go out or to rest.

For example, sometimes when she’s sleeping, and his diaper needs to be changed, I change it. Or when my mother, sometimes, she’s tired, she asks me to change it, and I do. (P4)

Discussion

The objective of this study was to explore how the older siblings of children with ASD experience the treatment provided to the latter. Our results are organised around four themes: the treatment targets, its perceived effectiveness, the questions it raises and intrafamily relationships. This is the first study to explore the point of view of siblings on this topic. Three aspects seem to us especially important: the distress and confusion of the older siblings related to treatment, their discourse as an echo of that of their parents and finally, the caregiver role they assert.

They reported an experience of distress and confusion related to their siblings’ treatment. They mentioned numerous points in which their siblings’ condition affected them emotionally, in particular those related to communication and to stigmatisation of ASD children. This finding reinforces data in the literature describing the reactive sadness of siblings and their relational and social difficulties (Benderix and Sivberg, 2007; Petalas et al., 2009). We also found that the respondents worried about the future of their siblings. Petalas et al. (2012) previously reported this worry, underlining the importance of an open discussion on the subject as support for the siblings. Here, the brothers and sisters in our study specifically relate this worry for their sibling’s future to what they expect of the treatment; they considered that this future should be one of the primary targets of treatment. We can also see in this worry about their siblings’ future their awareness of the change in their role over time. Some adolescents already place themselves in the position of the sibling’s future principal carer.

Moreover, although they were able to perceive and judge the effectiveness of treatment, they were also confused about its contents and its role. They did not seem to completely understand the point of the non-pharmaceutical treatments and did not really distinguish between them. Most of the participants seemed confused between the biomedical approach to ASD, as a condition that must be treated and cared for, and the educational approach, in which children with ASD simply need help to learn and grow up. This confusion has never been described in the literature for siblings but has long been known to be part of the debate between professionals and parents (Hochmann, 2013).

Our results about the targets and perceived effectiveness of treatment have been described in studies of parents of children with ASD. Like the siblings in our study, parents underline the importance in treatment of teaching, communication and peer relationships; they also stress the stigmatisation of ASD children and their families (Corcoran et al., 2015; Lindsay et al., 2016; Minhas et al., 2015). These similarities extend beyond the simple questions of treatment targets and effectiveness; the mother’s omnipresence in the child’s care described in our results has been found in these other studies (Minhas et al., 2015).

We were able to observe directly the influence of the parental discourse on the siblings’ points of view. In the interviews, the participants very often referred to parental perspectives and described their agreement with their parents’ theories and beliefs about the child’s condition and needs. We can therefore wonder about the difficulties that adolescents have in developing their own ideas about their younger siblings’ condition and treatment. It also raises questions about the extent to which these teens’ discourse echoes that of their parents and about how to distinguish the parental preoccupations that they report and share from their own.

In our results, the older siblings asserted they helped, even cared for, the child with ASD. Their experience in this helping function appears positive, both for the adolescent and for the sibling relationship. Our results reinforce the existing data in the literature on the siblings of children with ASD, mentioned in particular around the sibling-mediated behavioural approach (Ferraioli et al., 2012; Mandleco and Webb, 2015). Our results also fit into the larger literature about the willingness to help about the siblings of children with serious and/or chronic diseases, such as cancer (Mu et al., 2015) or psychotic episodes (Sin et al., 2013) or in palliative care situations (Gaab et al., 2014). This willingness of siblings to help is associated with requests by them for information directly from healthcare professionals; this has led to the establishment of effective psychoeducational interventions to support siblings and involve them in the management (Sin et al., 2013).

Perspectives on treatment and research

Our results suggest that these older siblings need help in coping with their brother/sister’s condition, but that they also need to help.

On the one hand, their distress and confusion reinforces the need for the global family-centred treatment approaches already developed in the literature (Ooi et al., 2016). Programmes specifically intended for the siblings of children with serious diseases – support groups or psychoeducational interventions – appear necessary and have already been described in the literature (Roberts et al., 2016). These programmes will also allow the older siblings to develop their own ideas about ASD and its treatment.

This point brings us back to the questions mentioned above about the influence of parental discourse on the siblings’ points of view. We think it is necessary to offer siblings simultaneously a space to talk, in groups and individually, so that they can express their own ideas, but also the possibility of an open dialogue with their parents about the younger child’s disease and care, during family interviews, for example, to try to reduce their confusion about it. It also appears necessary to conduct research that crosses the perspectives of parents and siblings to be able to determine which sibling statements echo the parental discourse and which derive exclusively from the siblings’ preoccupations and points of view.

At the same time, these older siblings very often offer help and care to the child with ASD. Professionals tend to warn families against allowing the older children to play this helpful role and about the psychosocial risks associated with it (Verté et al., 2003), but other studies have showed the mutual benefits of siblings’ involvement in care (Ferraioli et al., 2012). In line with these studies, we think, that when older siblings already play and claim this role, they, like the parents, may benefit from their empowerment. Moreover, the consideration of their point of view about treatment could be useful for the patient’s management and benefit the siblings at the same time. This might also help alleviate the siblings’ concerns about the child’s future and the greater place that siblings may occupy then. Qualitative studies in adult siblings have already described and explored this commitment towards their brother or sister with ASD and this willingness to be involved in their care (Tozer and Atkin, 2015); in children and adolescents, the study by Ward et al. (2016) highlighted siblings’ willingness to protect but also to play with the ASD child. To our knowledge, no qualitative study has explored the involvement in care and commitment of siblings in childhood and adolescence, and we think that further qualitative studies on this topic are needed.

Helping the siblings to cope and involving them in the care thus appear to be aspects of the overall management of the child with ASD that healthcare professionals should take into account.

Strengths and limitations of this study

This study is the first qualitative study to focus on how older siblings experience the treatment of children with ASD. This study is based on a rigorous methodology. Because this was an exploratory qualitative study, it is important to note that we were not seeking to generalise from our results but rather to explore, in a given context, how the siblings perceive the treatment provided to their brother or sister with ASD.

Nonetheless, some limitations must be taken into consideration. First, this study took place in France, and caution is required in transposing our results to other contexts because care for ASD depends strongly on each country’s organisation of their medical system and on their economy. Similarly, this is an exploratory study in a specific care setting (day hospital) of children all diagnosed with severe ASD (level 3 according to the DSM-V criteria) but heterogeneous with respect to intelligence quotient (IQ), which could have influenced their siblings’ perspectives.

Second, the objective of the study was to study their global view of their siblings’ treatment: we did not seek to assess the effectiveness of specific treatment methods for ASD (Fakhoury, 2015). Finally, our results concern the subjective experience of adolescents of the treatment of a younger sibling with ASD. They cannot be transposed to younger children with an older sibling with ASD, or to adult siblings. These populations could be studied in qualitative studies with a similar design. Similarly, it would be interesting to explore with the same design the points of view of parents and patients on this care, to cross these perspectives.

Conclusion

The siblings of patients are often largely forgotten in the assessment of treatment. This study led us to underline the need for global management of the family, including the siblings. They must be considered simultaneously as persons in distress but also as resources who must be given the opportunity to be involved in caregiving.

Supplemental Material

AUT728435_Lay_Abstract – Supplemental material for Psychiatric care of children with autism spectrum disorder – What do their siblings think about it? A qualitative study

Supplemental material, AUT728435_Lay_Abstract for Psychiatric care of children with autism spectrum disorder – What do their siblings think about it? A qualitative study by Jordan Sibeoni, Louise Chambon, Noel Pommepuy, Clementine Rappaport and Anne Revah-Levy in Autism

Supplemental Material

AUT728435_Supplementary_material – Supplemental material for Psychiatric care of children with autism spectrum disorder – What do their siblings think about it? A qualitative study

Supplemental material, AUT728435_Supplementary_material for Psychiatric care of children with autism spectrum disorder – What do their siblings think about it? A qualitative study by Jordan Sibeoni, Louise Chambon, Noel Pommepuy, Clementine Rappaport and Anne Revah-Levy in Autism

Footnotes

Funding

The author(s) received no financial support for the research, authorship and/or publication of this article.

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