Growing up with disabled siblings - opportunity or threat to development?

Mgr Adriana Łada-Maśko

mgr Adriana Łada-Maśko, photo by Alan Stocki/UG

December 3 is the International Day of Persons with Disabilities. I talk about disability in terms of family psychology with mgr Ariadna Łada-Maśko from the Department of Developmental Psychology and Psychopathology, Faculty of Social Sciences, UG, who explores the topic of growing up with a disabled sibling and the role of family and individual factors in the transition to adolescence from the perspective of a healthy child.

Elżbieta Michalak-Witkowska: - Under which programme do you carry out the project titled 'Growing up with a disabled sibling - an opportunity or a threat to development? The role of family and individual factors in the transition to adolescence - the perspective of a healthy child'?

Mgr Ariadna Łada-Maśko - I am carrying out the project within the framework of the Prelude grant I received from the National Science Centre under the supervision of dr hab. Małgorzata Lipowska, prof. UG, with whom I have been cooperating since my Master's degree in Psychology.

- What is the main objective of the project?

- The project aims to investigate the specificity of the process of growing up in adolescents with disabled siblings. I am interested in the functioning of adolescents with disabled siblings as a person growing up in three environments: family, peers and school. Furthermore, I consider both the difficulties that may be associated with having a disabled sibling (e.g. higher risk of internalising disorders - i.e. anxiety, depression and other mood disorders - and externalising disorders - i.e. oppositional defiant disorder, conduct disorder, or those associated with psychoactive substances and behavioural addictions. I also highlight the possible benefits that having a disabled sibling can have on an adolescent's functioning (e.g. better quality of family relationships, a higher sense of responsibility or better school functioning).

- Why did you decide on this topic? What type of disability did you include in your research?

- In addition to my academic work, I am also a psychologist-practitioner on a daily basis involved in diagnostic and therapeutic work in a specialised psychological-educational counselling centre. I am also in the process of specialising in clinical psychology, hence I am extremely close to the evidence-based psychological practice (EBPP) approach. This practice assumes that clinical diagnosis and therapeutic interaction should not only be based on the clinician's experience but, above all, refer to validated, reliable data and contemporary scientific research. In my scientific work, I try to provide reliable and up-to-date data. Working daily with children and young people with various disabilities, I have noticed that the problems faced by their family system, especially their healthy siblings, are somehow neglected in both institutional and everyday family interactions. In my project, I would like to address both adolescents who have siblings with physical disabilities, as well as intellectual disabilities and chronic disease - diabetes. The research so far is mainly conducted from the perspective of siblings of children with autism spectrum disorders or Down's Syndrome, so it is very important to address the functioning of siblings of children with disabilities in the broader context of disability and to see if there are any specificities, differences and similarities.

- You mentioned that having a sibling with a disability can be, on the one hand, a source of very important experiences, but on the other hand, a huge challenge, especially during adolescence. Which important experiences and challenges are you talking about?

- Relationships between siblings are some of the first and most important relationships in our lives that influence a child's cognitive, social and emotional development. Experiences gained in relationships with siblings during everyday activities, e.g. playing together or conflict situations, influence the child's later social relationships, personality development or the coping strategies used in difficult situations.

As we know, adolescence is an extremely difficult and challenging time for teenagers, in which dynamic changes take place in the physical, mental and social spheres of young people. Above all, it is a time of making the first independent choices, internalising social norms or shaping a value system, but it is also a time when adolescents should have the chance to focus on themselves and their own transformations, both physical and psychological. Hormonal changes connected with the process of biological maturation and the shaping of the personality, the establishment of the first close relationships and taking the first decisions concerning further professional development can be connected with experiencing great stress. One of the important factors limiting 'adolescence' may be the situation of a family coping with a chronic illness or disability. A young person with a disabled sibling faces tasks that are atypical for adolescence. Very often, family members directly or indirectly deny him or her the right to 'take care of himself or herself, to focus the family's attention on him or herself' because of the need to cope with the challenge of raising a child with a disability.

Healthy siblings of children with disabilities experience many emotions and concerns about their sibling's illness. They try to help and understand the situation while facing much more responsibility than their peers. Teenagers already have sufficient cognitive abilities to largely understand the disability their sibling is facing and the problems the family is experiencing as a result, and they have a broader capacity when it comes to helping their parents care for their sick sibling. As a result, they are often required, among other things, to devote a great deal of time to taking care of their disabled sibling and engaging in household chores. In such a situation, we are confronted with the so-called parentification phenomenon, i.e. children taking over tasks that should be carried out by adults.

- Children with disabilities require more support and assistance from the family, its role in the parenting process is probably particularly important?

- The family plays a huge role in the upbringing process, whether we are talking about a child with or without disabilities. It is in the family that children gain their first experiences of life, establish their first emotional bonds with parents and siblings, learn the rules of social life and shape their value system. In the case of children with disabilities, this role seems to be even more important in view of the fact that it is on the family that their quality of life mainly depends, due to their much lower independence in daily life. It is mainly up to the family to ensure that a child with a disability has the space to develop, realise their dreams and be able to participate in society, for example, to integrate with their peer group. However, it is important to remember that the disability of a child affects the life of the family on many levels, significantly changing the way the whole family system functions, for example by influencing family routines, relationships between parents, siblings, life plans and expectations of individual family members, but also the family's finances.

Contemporary research on the functioning of families with a child with disabilities, however, provides very interesting findings, showing that it can also be a positive and enriching experience. Family members with a disabled child carrying out non-normative tasks can develop their personality and acquire new competencies. Some studies also indicate that such families observe higher family cohesion and stronger relationships between family members, and develop more effective strategies for coping with new difficulties and challenges.

- What does the scientific literature say about the topic of your research?

- This issue is analysed in the scientific literature and research from two main perspectives: threat and resource.

The threat perspective emphasises that children with disabled siblings often receive less attention from parents and other family members and friends, consequently feeling lonely, unimportant and rejected. As a result, they often develop feelings of injustice, jealousy and anger towards their sick sibling, which can then result in hyperactivity, irritability and aggression manifested in school and peer functioning, as well as adaptation problems. Reduced self-esteem and lack of self-confidence can also be seen among siblings of children with disabilities. They are also often referred to as the 'forgotten people', whose responsibility it is to look after their sick siblings. In addition to psychological problems, children with disabled siblings are more likely to have various somatic complaints (headaches, general feeling of weakness) and problems with sleep and eating. Research also indicates that adolescents from this group show higher levels of separation anxiety and internalising and externalising disorders.

The second perspective — resource, on the other hand, indicates a higher sense of responsibility, self-efficacy and pride in caring for the affected person. Among siblings of children with a disabled family member, fewer arguments and competition are observed than among siblings of typically developing children, and a higher level of empathy is also noticeable, as well as an increase in self-control, tolerance and understanding.

- What questions are you still looking for answers to concerning the project's research?

- One of the things that puzzle me is what are the specifics of growing up young people with disabled siblings.

The results of the research so far do not provide clear indications. As I have already mentioned, in the context of having a sibling with a disability, two main perspectives dominate - that of threat and that of resource - while most research deals with developmental stages earlier or later than adolescence, most often referring to pre-adolescence or adulthood. This is why exploring whether adolescents who have a disabled sibling grow up differently from those who have a healthy sibling is of great interest to me.

- When can we expect the first research results?

- The project is planned for three years and I hope that in this time I will be able to collect all the necessary data and be able to present the full results. I hope that the results obtained will contribute to the development of psycho-education and prevention programmes, supporting families struggling with a disability, but also professionals working with them daily.

- Thank you for the interview.

Elżbieta Michalak-Witkowska / Press Office UG