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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BackgroundFacilitating adult sibling involvement for individuals with pervasive support needs is important. This study explores the attitudes of healthcare professionals in this process.MethodThe attitudes of healthcare professionals (n = 60) in the Netherlands were explored through an online, self-developed survey with open and closed-ended questions.ResultsAround 40% of the participants reported (partly) lacking knowledge about sibling preferences and 23% (partly) lacking practical opportunities for involving siblings. The majority (partly) perceived the involvement of siblings as an enjoyable part of their work (82%), rated their knowledge and skills positively (87%), and regarded sibling involvement as such importance that they would be willing to exert considerable effort to contribute to it (61%). Not all participants perceived it as their job to collaborate with siblings.ConclusionsThere is a need to increase healthcare professionals' knowledge about adult sibling preferences and structurally embed sibling involvement within care practices.
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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: Parents of children with profound intellectual and multiple disabilities (PIMD) have extensive care duties. This study describes the phenomenon “parenting a child with PIMD.” Method: We conducted in-depth interviews with 25 Dutch parents. A reflective lifeworld research. Findings: The essential meaning of the phenomenon was understood as “continuously struggling to create and maintain new equilibriums that protect the child and the family from hardship; changing in context through time.” The following eight constituents were identified: (1) medical complexity; (2) multidimensional weariness; (3) care for siblings; (4) social connectedness; (5) uncertainty about the future; (6) wrecking bureaucracy; (7) dependency on healthcare delivery; and (8) financial concerns. Conclusions: Healthcare services should provide families with easy access to assistive technology and services needed to manage family life. Responsiveness to parents’ challenges offers them the possibility to participate in society. Healthcare professionals should address the parents’ perspectives related to the child’s quality of life.
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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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ENGLISH: A vast and growing body of research has shown that crime tends to run in families. However, previous studies focused only on traditional crimes and research on familial risk factors for cyber offending is very scarce. To address this gap in the literature, the present study examines the criminal behavior of the family members of a sample of cyber offenders prosecuted in the Netherlands. The sample consists of 979 cyber offenders prosecuted for computer trespassing between 2001 and 2018, and two matched groups of 979 traditional offenders and 979 non-offenders. Judicial information and kinship data from Dutch Statistics were used to measure criminal behavior among family members. Both traditional offenders and cyber offenders were found to be more likely to have criminal fathers, mothers, and siblings than non-offenders. Additional analyses, however, showed different patterns between cyber offenders who were only prosecuted for cyber offenses and those who also committed traditional crimes. While the former group of cyber offenders were similar to non-offenders in terms of family offending, the latter group of cyber offenders were more similar to traditional offenders. Overall, these results suggest that the traditional mechanisms of intergenerational transmission of crime can only partially explain cybercrime involvement. NEDERLANDS: Uit een groot en groeiend aantal onderzoeken blijkt dat criminaliteit vaak in families voorkomt. Eerdere studies richtten zich echter alleen op traditionele misdrijven en onderzoek naar familiaire risicofactoren voor cybercriminaliteit is zeer schaars. Om deze leemte in de literatuur op te vullen, onderzoekt deze studie het criminele gedrag van familieleden van een steekproef van cyberdelinquenten die in Nederland worden vervolgd. De steekproef bestaat uit 979 cyberdelinquenten die tussen 2001 en 2018 zijn vervolgd voor computervredebreuk, en twee gematchte groepen van 979 traditionele delinquenten en 979 niet-delinquenten. Justitiële informatie en verwantschapsgegevens van het Centraal Bureau voor de Statistiek werden gebruikt om crimineel gedrag onder familieleden te meten. Zowel traditionele daders als cybercriminelen bleken vaker criminele vaders, moeders en broers en zussen te hebben dan niet-daders. Aanvullende analyses lieten echter verschillende patronen zien tussen cyberdelinquenten die alleen werden vervolgd voor cyberdelicten en degenen die ook traditionele delicten pleegden. Terwijl de eerste groep cyberdelinquenten vergelijkbaar was met niet-delinquenten wat betreft gezinsdelinquentie, leek de tweede groep cyberdelinquenten meer op traditionele delinquenten. In het algemeen suggereren deze resultaten dat de traditionele mechanismen van intergenerationele overdracht van criminaliteit de betrokkenheid bij cybercriminaliteit slechts gedeeltelijk kunnen verklaren.
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In disability research, there is an increased focus on the well-being of families with a child with a disability, also known as family quality of life (FQOL). However, the well-being of families with a child with profound intellectual and multiple disabilities (PIMD) has not yet been explored, even though their well-being may be affected by the pervasive support needs they need to manage. In turn, sufficient well-being of the family is necessary to guarantee adequate support and thus well-being for the person with PIMD. The purpose of this study was to examine the well-being of families with a child with PIMD, including possible differences between parents and siblings, and how individual and familial factors are related to FQOL. A total of 82 participants from 44 families with a child with PIMD in the Netherlands participated. Multilevel models were employed to analyze FQOL scores and which factors significantly affected scores. Families scored moderately high on both total score and subscales, scoring lowest on emotional well-being. There were significant differences between parents and siblings and a significant effect of age of the respondent on emotional well-being, material well-being, and disability-related support. Siblings scored higher than parents, and scores decreased with age on these domains. Although families with a child with PIMD scored, on average, satisfactory on their FQOL, they were least satisfied with the support for their emotional well-being, and may therefore require additional support for this aspect of their family life. Results of this study contribute to understanding the lives of families with a child with PIMD and their support needs.
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What do a grandmaster Jedi and a grandfather have in common? The answer will become clear in this story of two sisters who used the Career Writing method to identify career questions, life themes, and tapped into the wisdom of their childhood heroes. Lengelle, R., Haggerty, E. (2022). Career Writing and the Tale of Two Sisters: The Family Project, Heroic Drive, and How No Sibling Has the Same Parents. In: Schreiber, M. (ed) Narrative Ansätze in Beratung und Coaching (pp. 163-172). Springer, Wiesbaden.
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The current study analyzed blogs written by four Dutch parents of children with profound intellectual and multiple disabilities, with the aim of deepening the understanding of the parents’ concerns. Thematic analysis was conducted and five main themes were identified: Dealing with uncertainties addressed the impact of unpredictability present in the everyday lives of parents, Love and loss described the complexity of concurrently cherishing the child and grieving various types of loss, Struggling with time, energy and finances detailed imbalances and struggles related to parents’ personal resources, Feeling included in communities and society specified social consequences, and Relating to professional care services reflected on stress and support associated with professional care delivery. The study findings demonstrate how care professionals should acknowledge parents’ vulnerabilities by being aware of their existential distress and empowering parents to exercise control of family thriving.
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In our highly digitalized society, cybercrime has become a common crime. However, because research into cybercriminals is in its infancy, our knowledge about cybercriminals is still limited. One of the main considerations is whether cybercriminals have higher intellectual capabilities than traditional criminals or even the general population. Although criminological studies clearly show that traditional criminals have lower intellectual capabilities, little is known about the relationship between cybercrime and intelligence. The current study adds to the literature by exploring the relationship between CITO-test scores and cybercrime in the Netherlands. The CITO final test is a standardized test for primary school students - usually taken at the age of 11 or 12 - and highly correlated with IQ-scores. Data from Statistics Netherlands were used to compare CITO-test scores of 143 apprehended cybercriminals with those of 143 apprehended traditional criminals and 143 non-criminals, matched on age, sex, and country of birth. Ordinary Least Squares regression analyses were used to compare CITO test scores between cybercriminals, traditional criminals, and non-criminals. Additionally, a discordant sibling design was used to control for unmeasured confounding by family factors. Findings reveal that cybercriminals have significantly higher CITO test scores compared to traditional criminals and significantly lower CITO test scores compared to non-criminals.
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