It is reported that parents can handle their reactions of having a child with a chronic illness by seeking information and gaining knowledge about the diagnosis. It has been suggested that this is a way for parents to restore order in a chaotic existence. A complement to this perspective is to focus on what it means to be a parent and what is included in parenthood. The purpose of the present study was to increase our understanding of parents' need for knowledge. Interviews were conducted with parents (n = 44) who have experienced receiving a diagnosis of Turner Syndrome (TS) for their daughter, in order to explore the parents' motives and strategies for seeking information about the condition. Out of the 44 parents interviewed, 26 (21 mothers and 5 fathers) had sought information. It was found that the motives for seeking information were, to some extent, related to the parents' experiences of the consultation at the time of diagnosis. Twenty-three parents (21 mothers and 2 fathers) were dissatisfied with the information provided by the physician, while 21 (12 mothers and 9 fathers) were satisfied. Among the dissatisfied parents 16 (15 mothers and 1 father) sought information, and among the satisfied 10 parents (6 mothers and 4 fathers) sought information when they received the diagnosis for their daughter. The mothers described different strategies to gain information. They attended the library to borrow medical literature, looked up the syndrome in reference books, read articles in newspapers and asked questions of other mothers who had daughters with TS. However, it was found that the dissatisfied mothers used more and different strategies to find information compared with the fathers and the mothers who were satisfied. The motives of all the parents were to learn more about the condition. However, the dissatisfied mothers reported that they sought information because they found it important to control the actions of the professionals. The mothers that were satisfied with the information argued that they sought information in order to be able to explain the condition to others.
Eleven young adults with an intellectual disability were interviewed for this exploratory study aimed at charting their experiences of growing up in homes where at least one parent had the same or a similar disability. Two main themes emerged from the interviews. Firstly, a clear majority of the young adults had positive experiences of family life during their upbringing, as expressed especially through their memories of their grandparents. Secondly, the study participants all described experiences of being bullied and harassed outside the family context. The results obtained in this study highlight the importance of the parents, the family, and informal networks in the upbringing of these children. The study also considers the consequences that the study participants' negative experiences of peer contacts and their sense of exclusion might have for their prospects in later life.
Professionals and parents with intellectual disability often disagree on what support is needed and how it should be provided. Parents report having little say in the matter, feeling coerced into accepting services that they do not find useful. Professionals may describe the parents as difficult to engage and not open to receiving help. The aim of this article was to capture the views and experiences of professionals working with parents with intellectual disabilities. A qualitative analysis of focus group discussions was undertaken. Study participants described their work with client families as fraught with difficulty. Their accounts differed depending on whether the child was living with the parents or the child had been placed in out‐of‐home care. In the first situation, parental limitations and inability to meet the needs of their children were emphasized, with parents failing to recognize their own high support needs. In the second situation, the parental role was seen as important, and it was considered vital to continue to provide proper support to enable the parents' ongoing contact with their child and maintaining their parenting. The difference could be explained by lack of appropriate support and knowledge provided through the organizations at which the study participants worked, along with job stress. The author notes that study participants doubted the capacity of the parents to care for their children and were uncertain about how to best support them. Gaps were revealed in the way in which knowledge about families with a parent with an intellectual disability is produced and used by professionals.
• Summary: This article explores a relatively uncharted research area. The focus of the analysis is on how professionals working in care provision units, specialized prostitution units, the police, social services and special schools detect and deal with prostitution among people with intellectual disabilities. The data were obtained primarily through focus group interviews. The study shows that organizational specialization in different authorities and services makes it difficult to identify and work with this group. Clients with complex problems tend to find themselves in between the jurisdictional fields of different authorities, meaning that many do not receive the support that they need. • Findings: In recent decades social work has undergone increasing balkanization and specialization. Each particular organization is regulated by specific legislation, regulations, forms of knowledge and normative assumptions. Professionals working with people with intellectual disabilities have difficulties in detecting prostitution among their clients, whilst those who work with prostitution lack the knowledge and methods to work with intellectual disabilities. At the same time, social work with these individuals is conducted within a field of tension between the client′s right of self-determination and professionals’ responsibilities for their well-being. • Applications: The study demonstrates that, with this type of complex problem, it is important to establish different types of collaboration between different organizations. However, due to the risk of increased control being detrimental to clients, collaboration needs to be founded on the client’s needs and right to self-determination.
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