BackgroundAdult siblings are important in the lives of individuals with profound intellectual disabilities, especially as parents age. However, little is known about the roles they assume.MethodWe examined these roles among 58 participants from the Netherlands, who completed an online questionnaire.ResultsMost participants (89.7%) assumed multiple roles, and the majority were content with their roles. Between 7% and 58% indicated that they were the only individuals providing a certain role. Shared roles primarily involved healthcare professionals, other siblings, and parents. Almost half the participants (48.2%) assigned higher scores for the amount of support provided than for the experienced burden.ConclusionsAdult siblings often assume multiple roles. The shared roles emphasise the importance of collaboration.
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Siblings are important in the lives of individuals with an intellectual disability and pervasive support needs; however, adults’ experiences of the things they do with or for their siblings with pervasive support needs remain underexplored. This study examined positive and challenging aspects of their roles related to their siblings. An online questionnaire was completed by 55 adults whose siblings had pervasive support needs. An inductive approach was used to thematically analyze open-ended questions about their experiences. The respondents described rewarding experiences of being with their siblings, combined with a sense of care and responsibility, and noted how their experiences were affected by their siblings’ support needs. “Being of service” was experienced as both rewarding and as a demanding responsibility. Collaboration with family members and health care professionals was another overarching theme. Our findings highlighted the valuable mutual contributions of siblings in each other’s life when one of them has pervasive support needs. Understanding adults’ experiences relating to their siblings who have pervasive support needs enables service providers to facilitate their contact and support. In addition, these findings can provide input for government agencies and organizations that provide support for people with disabilities by increasing awareness about siblings’ perspectives.
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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.
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Broers en zussen van mensen met (Z)EVMB zijn vaak levenslang betrokken bij de zorg voor hun broer of zus. Gedurende het leven veranderen de rollen die zij vervullen. Wanneer de ouders meer op leeftijd raken en de zorgtaken voor hen zwaarder worden of niet meer mogelijk zijn, komen broers en zussen voor de vraag te staan welke rollen zij in deze nieuwe situatie willen vervullen. In dit promotieonderzoek willen we inzicht krijgen in de rollen die volwassen broers en zussen vervullen in het leven van mensen met (Z)EVMB. Wat zijn de ervaringen van broers en zussen en welke ondersteuningsbehoeften hebben zij? En wat betekent hun betrokkenheid voor de sociale contacten en participatie van hun broer of zus met (Z)EVMB? Ook willen we kijken naar de samenwerking tussen zorgprofessionals en familieleden van de tweede generatie. Hoe verloopt deze samenwerking en hoe wordt betrokkenheid van tweede generatie familieleden gefaciliteerd?
