Parents with intellectual disabilities – experiences of parenting and parenthood in Sweden

By: PhD student Ida Runge, Malmö University, Department of Social Work.

Introduction: 

In recent decades, the social conditions for parenthood for persons with intellectual disabilities in Sweden have changed significantly. Reformed values have developed family and disability policies, which in turn generated both improved parental support and general support for people with disabilities. Nevertheless, people around these families are often concerned that the children are at risk because their parents may have difficulties exercising a sufficiently good parenting. 

However, there is little knowledge about how Swedish parents themselves experience their parenthood in these transformed contexts. Purpose with this monograph thesis is to understand the parents' own perspective of their parenthood. More specifically, the aspects that they themselves consider central to their parenting and, how the community’s support is experienced. 

Methods:

The empirical material is obtained through qualitative interviews with parents with intellectual disabilities. The social-relational perspective and the concept of family practices are used as a theoretical frame. 

Results: 

The preliminary results show that the parents strive to be "regular" parents. They are keen to understand how a parenthood is exercised "right" and to comply with these norms. The analysis indicates that they feel a need to convince others that they are able to manage their parenthood. Being a responsible parent is described as an ideal. Parents' ideals are reflected in how they depict their own parenting. It is described as caring, responsibility for the child's development and in setting limits for the child. Resources for a well-functioning parenting are described as the parent's focus on the child's needs, own experiences of well-functioning parenting and an organised life with clear structures. Many have geographical and psychological proximity to their relatives and share their daily lives with them. It is common that the relatives provide practical and financial support to the parents. In situations where they have little access to such resources, they tend to end up in situations that they have difficulties to solve.

Support from society has a major impact on their parenthood. Support efforts based on strengthening the parents' own abilities and compensating for deficiencies, tend to be helpful and reduce dependency. Time-limited efforts aimed at developing the parenting, which at the same time aim to monitor how the parenting work, are, however, experienced as stressful and sometimes counterproductive. Several of the parents' children are taken into custody. In cases where custody is taken by force, the parents have difficulties in maintaining a familiar relationship with the child. Among those who have agreed on custody, children and parents meet in flexible forms, facilitating a familiar relationship with the child.

Brief discussion and implications:

The parents' preoccupation with the ideals of a good parenting indicates that they feel limited in being able to deviate from the norms. Deviating may pose a risk on the parenthood, as it can be perceived as insufficient. A successful community support should consider the parents’ social network, should be based on the parents’ abilities and compensate for their limitations. A basic trust between the parent and the support person appears to be a key component.