Background: Intellectual disability (ID) is a developmental disorder that causes considerably below-average intellectual performance and adaptive behaviour. In the context of the present study, families raising a child with ID are reported to experience multiple challenges that appear not to be well documented in Pakistan. Methods and procedures: Pakistan, which was conducted in Karachi, Pakistan, followed participatory action research, in which the researcher and participants examined their existing experiences of informal social support and then created, implemented, and evaluated actions to strengthen this informal social support. A total of five families (n = 25) participated in the study. These participating families comprise parents, siblings, and significant others, i.e., aunts, uncles, and grandparents, living with the child with ID. Families with children with ID were selected through a school for children with ID who are under 12 years old. This qualitative action research was conducted in two distinct parts, i.e., a) exploratory part and b) action part. This paper presents the findings of the first exploratory part of the study. Aim: The exploratory phase aimed to explore and examine the experiences and challenges families may experience with informal social support while caring for a child with an intellectual disability in Karachi, Pakistan. Findings: Parents often sacrifice their personal needs and aspirations for their children, leading to decreased tolerance and anxiety. Lack of communication, support, and assistance from family members is another significant issue. Stigmatisation and discrimination from school, relatives, and friends can cause depression and distress. The study emphasises the need for a unified and coordinated approach to support and care. Religious beliefs, siblings, and close friends provide comfort and well-being. When parents manage to connect with similar families, they have the opportunity to express a collective commitment to caregiving. Conclusion: To strengthen the situation, families propose enhancing intimacy and competency within homes and taking action at the governmental level. Governments must provide appropriate services, such as nurses supporting families, support groups, and religious traditions, to promote acceptance and holistic development for intellectually disabled children.
Always a complex and demanding task, parenthood can be an extra challenge when parents have severe mental illness. Clients with children may experience extra stress, feelings of uncertainty, and a lack of energy. They may have difficulty in talking about their disabilities with their children. Often, there are struggles with limited material resources and stigma or grief over the loss of having direct custody of their children. In all these situations, clients need support in interacting and communicating with their children in ways that benefit both parties. However, although there is a growing awareness of the needs of these clients and of parental responsibility for the children involved, the parental role is seldom a topic in mental health care. Within the field of rehabilitation, although there is considerable professional literature on skills training and experience in helping clients to realize personal goals in the areas of work, education, living arrangements, and social contacts, there are few or no tools to support clients who wish to strengthen their parenting skills.
Parental involvement is a crucial force in children’s development, learning and success at school and in life [1]. Participation, defined by the World Health Organization as ‘a person’s involvement in life situations’ [2] for children means involvement in everyday activities, such as recreational, leisure, school and household activities [3]. Several authors use the term social participation emphasising the importance of engagement in social situations [4, 5]. Children’s participation in daily life is vital for healthy development, social and physical competencies, social-emotional well-being, sense of meaning and purpose in life [6]. Through participation in different social contexts, children gather the knowledge and skills needed to interact, play, work, and live with other people [4, 7, 8]. Unfortunately, research shows that children with a physical disability are at risk of lower participation in everyday activities [9]; they participate less frequently in almost all activities compared with children without physical disabilities [10, 11], have fewer friends and often feel socially isolated [12-14]. Parents, in particular, positively influence the participation of their children with a physical disability at school, at home and in the community [15]. They undertake many actions to improve their child’s participation in daily life [15, 16]. However, little information is available about what parents of children with a physical disability do to enable their child’s participation, what they come across and what kind of needs they have. The overall aim of this thesis was to investigate parents’ actions, challenges, and needs while enhancing the participation of their school-aged child with a physical disability. In order to achieve this aim, two steps have been made. In the first step, the literature has been examined to explore the topic of this thesis (actions, challenges and needs) and to clarify definitions for the concepts of participation and social participation. Second, for the purposes of giving breadth and depth of understanding of the topic of this thesis a mixed methods approach using three different empirical research methods [17-19], was applied to gather information from parents regarding their actions, challenges and needs.
