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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In addition to formal welfare institutions, there are many informal initiatives in the social landscape that are engaged in social work. These informal actors offer help, care or support to their members and visitors, and/or fulfil a bridging function to formal welfare organisations. They fulfil this role in particularly for target groups that experience distance or barriers to the formal care and welfare system. Despite the important role they play, these actors are often still unknown territory for both formal care and welfare actors and policymakers. Based on research from Belgium and the Netherlands, this article sheds light on this hidden voluntary social work and its characteristics. We also examine hidden voluntary social work in relation to formal welfare organisations and the (local) government. Despite the potential added value of cooperation, it is not easy to build up a sustainable and equal cooperative relationship, or for the government to effectively support hidden voluntary social work. Safeguarding the uniqueness of informal players is a particular concern.
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The Social Support Act came into effect on 1 January 2007. The purpose of the new legislation is to enable citizens who are dependent on the support of the Municipality and those living around them to be able to live independently for as long as possible. Organizing informal care is one of the main targets of this policy. In the realization of this act several assumptions about informal care giving were implied. In this paper three of them are examined. The first assumption is that neighbourly cohesion will lead to exchanging neighbourly support. On the other hand it is assumed that a lack of neighbourly cohesion impedes neighbourly support. The second assumption is that there is an imminent shortfall in the supply of informal care. The third assumption is that healthy people (are expected to) help the vulnerable and that they have to be stimulated to do so. The findings are based on qualitative in-depth interviews, conducted in a small Dutch neighbourhood in Eindhoven, called Drents Dorp. It is argued that all three assumptions need revision in order that informal care policy can be more effective. This study shows that the relationship between neighbourhood cohesion and informal care is not clear cut. Neighbourliness is individualized, but this doesn't mean that neighbours don't support each other: they do, but on an individual one-to-one basis. Furthermore, the most vulnerable inhabitants are not reached by social interventions aimed at enhancing social cohesion. The assumed shortfall in the supply of informal care turns out to be a shortage in the demand of informal care. Due to their fear of dependency and pursuit of autonomy and independence, people hesitate to ask for support. This is far more an impediment for informal care than the alleged shortfall in supply. The assumption that the strong will support the vulnerable also needs adjustment. At least an important part of the exchange of support takes place between vulnerable people mutually.
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Aim: Informal caregivers share common experiences in providing care to someone with health and/or social needs, but at the same time their experiences differ across diverse backgrounds such as gender, age, culture, as these aspects of diversity co-shape these experiences. This scoping review aims to explore how aspects of diversity, across their intersections, are currently incorporated in informal care research and discusses how an intersectional perspective can further develop our understanding of informal care. Methods: A scoping review was performed to map relevant caregiving literature from an intersectionality perspective. Key terms ‘informal care’ and ‘intersectionality’ were used for a search in four databases resulting in the inclusion of 28 articles. All 28 studies were analysed based on a scoping review created intersectionality informed coding scheme. Results: Aspects of diversity are largely understudied in informal care research, in particular across their intersections and from a critical perspective. This intersectional informed analysis revealed that when studying diverse caregiving experiences the use of intersections of dimensions of diversity provides a nuanced understanding of these experiences. Conclusions: Adopting an intersectional perspective ensures that not only different categories or social identities of caregivers are included in future studies, but the mutual relationships between these categories embedded in their specific context are actually studied.
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In Dutch policy and at the societal level, informal caregivers are ideally seen as essential team members when creating, together with professionals, co-ordinated support plans for the persons for whom they care. However, collaboration between professionals and informal caregivers is not always effective. This can be explained by the observation that caregivers and professionals have diverse backgrounds and frames of reference regarding providing care. This thematic synthesis sought to examine and understandhow professionals experience collaboration with informal caregivers to strengthen the care triad. PubMed, Medline, PsycINFO, Embase, Cochrane/Central and CINAHL were searched systematically until May 2015, using specific key words and inclusion criteria. Twenty-two articles were used for thematic synthesis. Seven themes revealed different reflections by professionals illustrating the complex, multi-faceted and dynamic interfaceof professionals and informal care. Working in collaboration with informal caregivers requires professionals to adopt a different way of functioning. Specific attention should be paid to the informal caregiver, where the focus now is mainly on the client for whom they care. This is difficult to attain due to different restrictions experienced by professionals on policy and individual levels. Specific guidelines and training for the professionals are necessary in the light of the current policy changes in the Netherlands,where an increased emphasis is placed on informal care structures.
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AchtergrondInformele ouderlijke steun wordt gezien als kansrijke interventie voor het reduceren van opvoedstress. Er is echter weinig bekend over hoe relaties tussen ouders met en zonder opvoedstress zich ontwikkelen in opvoedingssituaties waarbij de ene partij ondersteuning geeft en de andere partij ondersteuning ontvangt. Kennis over bevorderende en belemmerende factoren kan helpen om informele ouderlijke steun verder vorm te geven.MethodenWe hebben gedurende een kwalitatief fenomenologisch onderzoek steunouders (N = 16) en vraagouders (N = 12) in een semigestructureerd interview gevraagd naar hun ervaringen met informele sociale steun in het informele opvoedingsondersteuningsprogramma Buurtgezinnen.nl.ResultatenBevorderende factoren zijn het opbouwen van vertrouwen in de startfase, het bewaren van enige sociale afstand, het erkennen van verschillen wat betreft opvoedstress, financiële mogelijkheden, opleidingsniveau en de normen en waarden die worden gehanteerd in de opvoeding. Ten slotte is het voorkómen van een grote disbalans tussen geven en nemen ook een belangrijke bevorderende factor. Belemmerende factoren zijn een gebrekkig zicht op de leefwereld van de ander, handelings- en vraagverlegenheid en ongevraagde steun.ConclusiesVerschillende factoren bevorderen het geven en ontvangen van informele sociale steun. Tevens is een aantal belemmerende ervaringen te onderscheiden, op grond waarvan aanbevelingen worden gedaan om de onderlinge relatie verder te optimaliseren.--BackgroundInformal parental support is increasingly seen as a promising intervention for reducing parenting stress. A better understanding of the facilitating and inhibiting factors in the relationships between parents who provide informal support and those who receive informal support could help efforts to successfully implement informal parental support.MethodsWe adopted a qualitative phenomenological research approach using semi-structured interviews with 28 parents who either provided (N = 16) or received (N = 12) informal support. The interviews contained questions about their experiences with the informal parenting support programme Buurtgezinnen.nl.ResultsPerceived facilitating factors included building trust in the start-up phase, keeping a certain social distance and acknowledging differences in terms of socioeconomic status, norms and values, or parenting stress. Last but not least, avoiding a serious imbalance in providing and receiving help is also a facilitating factor. Inhibiting factors included a lack of insight into each other’s world, reluctance to reach out or ask for help, and unsolicited support.ConclusionsSeveral relational factors can facilitate successful informal parental support. The identified inhibiting factors led to recommendations for improving informal support programmes.
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Informal learning spaces create opportunities for children and youth to develop their talents and to experience new social roles. In recent years, several public libraries in the Netherlands have established makerspaces to empower youth by facilitating the development of their digital skills in conjunction with their creativity. The Amsterdam Public Library created a network of makerspaces (Maakplaats021) and provided training for the makerspace-coaches. These coaches – former librarians or other professionals – have a central role in the makerspace and fulfill several functions. This contribution describes informal learning of children in these makerspaces and distills critical features that enforce learning through the lens of children aged 8–12 and their makerspace-coaches.
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Paper presentation on (the importance of) informal social work, based on research on this theme by the Department of Urban Social Work in the past years in New West Amsterdam and South east Amsterdam.
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This scoping review focuses on the views of informal caregivers regarding the division of care responsibilities between citizens, governments and professionals and the question of to what extent professionals take these views into account during collaboration with them. In Europe, the normative discourse on informal care has changed. Retreating governments and decreasing residential care increase the need to enhance the collaborationbetween informal caregivers and professionals. Professionals are assumedto adequately address the needs and wishes of informal caregivers, but little is known about informal caregivers’ views on the division of care responsibilities. We performed a scoping review and searched for relevant studies published between 2000 and September 1, 2016 in seven databases. Thirteen papers were included, all published in Western countries. Most included papers described research with a qualitative research design. Based on the opinion of informal caregivers, we conclude that professionals do not seem to explicitly take into account the views of informal caregivers about the division of responsibilities during their collaboration with them. Roles of the informal caregivers and professionals are not always discussed and the division of responsibilities sometimes seems unclear. Acknowledging the role and expertise of informalcaregivers seems to facilitate good collaboration, as well as attitudes such as professionals being open and honest, proactive and compassionate. Inflexible structures and services hinder good collaboration. Asking informal caregivers what their opinion is about the division of responsibilities could improve clarity about the care that is given by both informal caregivers and professionals and could improve their collaboration. Educational programs in social work, health and allied health professions should put more emphasis on this specific characteristic of collaboration.
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This paper highlights key opportunities for technology design for informal caregivers who provide long-term in-home care. For this purpose, a study with informal caregivers was conducted, including interviews (N=4) and online questionnaires (N=34) based on holistic analysis of supportive technologies. These investigations provide a deeper understanding of the key opportunities in the design of technologies to support the caregiver, namely (1) making caregivers better informed and more aware of existing solutions (2) increasing awareness of the caregivers' own wellness; (3) cherishing the valuable, positive moments of caregiving (e.g. by capturing precious moments) and (4) encouraging meaningful social interactions among caregivers for strengthening social ties.
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