<p>The purpose with this study was to investigate how parents experience their situation in life, having personal assistance at home to support their small children with disabilities. Different areas were investigated. What made them apply for personal assistance? How does the support affect the family and their parenthood? What would it mean if their children would not have personal assistance? The study was made using a qualitative method and the material was gathered through interviews. A combination of symbolic interactionism and system theory were used as theoretical perspectives. The parents described living with personal assistance as difficult. They express a combination of gratitude for the help they received together with a sense of guilt for not having taken care of their children themselves. It was hard for them to find their home turned into somebody’s working place and at the same time it was hard for them to feel at ease in their own home. In spite of these contradictory feelings, the parents in the study agreed that having access to personal assistance was a condition for their families to survive and that without it they would probably have been obliged to put their children into institutions.</p>

The purpose with this study was to investigate how parents experience their situation in life, having personal assistance at home to support their small children with disabilities. Different areas were investigated. What made them apply for personal assistance? How does the support affect the family and their parenthood? What would it mean if their children would not have personal assistance? The study was made using a qualitative method and the material was gathered through interviews. A combination of symbolic interactionism and system theory were used as theoretical perspectives. The parents described living with personal assistance as difficult. They express a combination of gratitude for the help they received together with a sense of guilt for not having taken care of their children themselves. It was hard for them to find their home turned into somebody’s working place and at the same time it was hard for them to feel at ease in their own home. In spite of these contradictory feelings, the parents in the study agreed that having access to personal assistance was a condition for their families to survive and that without it they would probably have been obliged to put their children into institutions.

Tyrimo tikslas - išanalizuoti tėvų psichologinio atsparumo ir susitaikymo su ikimokyklinio amžiaus vaiko negalia ryšį. Tyrime dalyvavo 134 tėvai, kurių vaikai lanko ar lankė Kauno lopšelį darželį „Spindulėlis“. Tyrimo imtį sudarė 62,7 % (84 tėvai) tėvų, turinčių neįgalų vaiką ir 37,3 % (50 tėvų) tėvų, turinčių sveiką vaiką. Didžioji dalis apklaustųjų buvo moterys – jos sudarė 76,1 % tiriamųjų, o vyrai – 23,9 %. Psichologinis atsparumas buvo vertinimas apskaičiavus bendrą balą iš socialinio palaikymo ir ištvermingumų skalių. Socialinis palaikymas buvo vertinamas pagal Socialinio palaikymo skalę (Dahlem ir kiti, 1988), ištvermingumas - pagal Amsel ir kitų (2003) ištvermingumo skalę. Remiantis Ulrich ir Bauer susitaikymo su netektimi modeliu, buvo sudaryta susitaikymo su vaiko negalia skalė. Tyrimo rezultatai parodė, kad mažesnis atsparumas susijęs su sunkesniu susitaikymu su vaiko negalia. Susitaikymą su vaiko negalia geriausiai prognozuoti galima remiantis patiriamu socialiniu palaikymu, gaunamu iš šeimos, ir iššūkio pojūčio stiprumu. Kuo didesni šie kintamieji, tuo susitaikymas su vaiko negalia lengvesnis. Tėčių (vyrų) grupėje rezultatai nebuvo statistiškai reikšmingi. Lyginant tėvus, auginančius sveikus vaikus ir tėvus, auginančius neįgalius vaikus, paaiškėjo, kad moterų grupėje suvokiamas socialinis palaikymas skiriasi priklausomai nuo to, ar motinos turėjo neįgalius, ar sveikus vaikus. Motinos, auginančios neįgalius vaikus, patiria mažiau suvokiamo socialinio palaikymo... [toliau žr. visą tekstą] / The aim of this study was to explore links between parents resilience and coping with disability of their pre-school aged child. Subjects of study was 134 parents who’s child is (or was) attending Kaunas kindergarten “Spindulėlis”. There were 84 (62,7%) parents who have disabled child and 50 (37,3%) parents with healthy children. Most participants were females (76,1 %), others (23,9 %) - men. Resilience was measured by combining two questionnaires: social support scale and hardiness scale. Social support was measured by Social support scale (Dahlem and others 1988) and hardiness was measured by Amsel and others (2003) hardiness scale. Scale of coping with child’s disability was made on the basis of Ulrich and Bauer death acceptance model. Results shows, that lower resilience is linked to worse acceptance of child’s disability. To prognosticate mothers acceptance to child’s disability is best to use view of coping and social support form family members. Links of acceptance and resilience are viewed only in mothers (women) results, there is no significant links in fathers (men) results. Also by comparing parents with disabled children and parents with healthy children, research showed, that has mothers with disabled children has observed social support, then mothers with healthy children. However in fathers results there were no significant difference in social support, despite child was disabled or not. Hardiness did not differ between parents who have disabled children and... [to full text]

This thesis explores the meaning of wellbeing for children with a disability in New Zealand, an area of social policy that has been largely unexamined. Focusing on the school environment, three questions are addressed: What does wellbeing mean for children with a disability? What factors influence it? Are current policy frameworks which address child wellbeing relevant to the wellbeing of children with a disability? The research involved qualitative data collection from nine purposively selected participants: children with a disability, their parents and key informants involved in service provision and policy development. A critical review of international and national literature on definitions of wellbeing and disability, and on existing data sources, is followed by a socio-demographic profile of children with a disability in New Zealand. Qualitative findings are interpreted in relation to current New Zealand social policy initiatives and frameworks - New Zealand's Agenda for Children, the Whole Child Approach and the Key Settings Model - as well as the theoretical perspectives of social solidarity, wellbeing, the ecological theory of human development and discourses of disability. Findings indicate that the concept of wellbeing as applied to all New Zealand children is also relevant to children with a disability. The difference however, lies in the factors which ultimately influence whether the various dimensions of wellbeing will actually be experienced by children with a disability. For these children, communication as a dimension of wellbeing for example, is influenced by language skill acquisition, which in turn depends upon allocation of appropriate and adequate resourcing of the child's learning environment. The conclusion drawn is that policy frameworks, principles and social indicators addressing child wellbeing, are inconsistently applied with regard to children with a disability. New Zealand's Agenda for Children which promotes an ecological approach to child wellbeing would benefit from further adaptation to reflect the needs of this specific child population. The notion of wellbeing for children with a disability needs further development for the purpose of knowledge building, and to ensure clearer articulation between processes of policy development, service provision, and resource allocation.

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Raising and living with a disability is hard for anyone. It is however harder in Swaziland. Disability is seen as a curse, a bad omen, and a punishment by the ancestors. The future of such kids is bleak in a society that discriminates them and make them face harsh stigmatization. The increase in the number of children born with disability or living with a disability has remained high. Regardless of this increase, which has also been aggravated by the high numbers of births by people living with HIV/AIDS, there is no professional facility that will provide the best care for children living with a disability. Parents are left with such a burden on their shoulders, with very little knowledge of how to take care of their children Swaziland has adopted policies and rights for people living with disability with the aim to integrate them into economic and social activities and to ensure the integration of programmes for persons with disabilities into mainstream education and provided infra-structure for rehabilitation for those who cannot be integrated. However, these rights and policies have remained on paper with no implementation. This has left children with disability secluded in the society, worn out each day and waited for the day to die. Lilita Care Centre is a facility that provides professional care for children living with disability. It is a facility that will provide physiotherapists and well trained care takers who understand such children and their needs and who will make the appropriate accommodations to support their learning and developments. The central mission will promote the advancement of people with disabilities so as to enable them to attain their maximum level of independence and integration in the community and to prevent the occurrence of physical disablement. This will be achieved by providing daily physical and mental stimulation programmes for the children and moreover teach and support their parents by providing disability sensitisation training programmes.

Made available in DSpace on 2016-06-02T19:46:12Z (GMT). No. of bitstreams: 1 3066.pdf: 3447240 bytes, checksum: a21a8ddc4d41cf9f065cbdf1a92fadce (MD5) Previous issue date: 2010-03-01 / Financiadora de Estudos e Projetos / Group interventions may be a useful strategy for helping siblings of disabled children to cope with difficulties related to the special sibling. The purposes of the present study were: 1) to identify the main needs of older siblings of disabled children; 2) to prepare and implement one group intervention and 3) to identify changes in some aspects of the participants lives, such as interaction between the siblings, coping strategies and knowledge about the sibling s disability . Study participants were eight pre-adolescents and adolescents aged 10 to 15 years, divided into Group 1 (G1) and Group 2 (G2). Participants underwent three evaluations, at least one before the intervention and one after it. The instruments used were the Entrevista com Irmão de Indivíduo com Necessidades Especiais (Interview with Sibling of Disabled Individual), the Formulário de Irmãos (Sibling s Questionnaire) and the Inventário de Estresse e Enfrentamento (Stress and Coping Inventory), besides the Questionário de Satisfação com o Grupo de Apoio (Satisfaction of the Support Group Questionnaire), the last one were applied at the end of the intervention. The study also conducted interviews with the mothers of the participants. The intervention was conducted in nine sessions, once a week, lasting two hours each, first with the G1 and then with the G2. The data were analyzed descriptively and/or quantitatively, and the results were compared immediately before and immediately after the intervention. The comparison was done for each participant in order to obtain evidences of changes in aspects related with the session s themes. The results indicated that after the intervention there was an increase of knowledge about the siblings disability and related aspects; variation of the interaction levels between siblings and the kind of behaviors directed at them; variation in the stress levels and in the strategies used to deal with difficult situations related to his brother or sister, demonstrating the role of intervention that is modify some aspects of participants lives. This study draws attention to the importance of group interventions applied to this kind of population, appropriate to his age and his needs. / Intervenções em grupo podem ser uma estratégia útil para ajudar irmãos de crianças com necessidades especiais (NEs) a lidar com dificuldades relacionadas ao irmão especial. O presente estudo teve como objetivos: 1) identificar as principais necessidades de irmãos mais velhos de crianças com NEs; 2) elaborar e implementar uma intervenção em grupo; e 3) identificar mudanças em aspectos da vida dos participantes, como interação com o irmão especial, enfrentamento e informações sobre a deficiência do irmão. Participaram do estudo oito pré-adolescentes e adolescentes com idade entre 10 e 15 anos, divididos em Grupo 1 (G1) e Grupo 2 (G2). Os participantes passaram por três avaliações, sendo pelo menos uma antes da intervenção e uma depois. Os instrumentos aplicados foram a Entrevista com Irmão de Indivíduo com Necessidades Especiais, o Formulário de Irmãos e o Inventário de Estresse e Enfrentamento, além do Questionário de Satisfação com o Grupo de Apoio aplicado ao fim da intervenção. Entrevistas também foram realizadas com as mães dos participantes. A intervenção foi realizada em nove sessões, uma vez por semana, com duração de duas horas cada, primeiramente com o G1 e depois com o G2. Os dados obtidos foram analisados de forma descritiva e/ou quantitativa, e comparações entre os resultados imediatamente antes e imediatamente depois foram feitas para cada participante, a fim de obter indícios de mudanças nos aspectos trabalhados durante as sessões. Os resultados indicaram que após a intervenção houve um aumento de conhecimentos sobre a deficiência do irmão e aspectos relacionados; variabilidade em relação aos níveis de interação com os irmãos e aos tipos de comportamentos dirigidos a eles; variabilidade também quanto aos níveis de estresse e às estratégias utilizadas para enfrentar situações difíceis relacionadas ao irmão; demonstrando o papel da intervenção em modificar alguns aspectos da vida dos participantes. O presente estudo chama atenção para a importância de se realizar intervenções em grupos com essa população, adequadas à sua faixa etária e às suas necessidades.

Background: In Sri Lanka, children with disability are being met with discrimination and stigma based on cultural and religious beliefs. Sri Lanka has ratified the Convention on the Rights of the Child that states that children with disability should enjoy full and decent lives with active participation in the community. Empowerment is the process that makes it possible for these children to experience equality in society. Nurses have a vital role working with health promotion for these children. Aim: to describe how nurses work with empowerment for children with disability in a low-income country. Method: A qualitative and empiric interview study with Sri Lankan nurses from two different rehabilitation teams. Result: The nurse‟s experiences in the subject are explained like; nursing with focus on the child, nursing with focus on the mother, nursing with focus on the interdisciplinary team. Conclusion: By nursing with these focuses, the nursing interventions for children with disability had a holistic approach that covered all aspects of life. / Bakgrund: I Sri Lanka blir barn med funktionsnedsättning mötta med diskriminering och stigma baserat på kulturella och religiösa övertygelser. Sri Lanka har skrivit under barnkonventionen som säger att barn med funktionsnedsättning har rätt till ett fullkomligt och värdigt liv med aktiv delaktighet i samhället. Empowerment syftar till processen som möjliggör jämlikhet i samhället för dessa barn. Sjuksköterskor har en viktig roll i denna hälsofrämjande process. Syfte: Att beskriva hur sjuksköterskor arbetar med empowerment för barn med funktionsnedsättning ett låginkomstland. Metod: En kvalitativ och empirisk intervjustudie med Sri Lankesiska sjuksköterskor från två rehabiliteringsteam. Resultat: Sjuksköterskorna beskrev sina erfarenheter så här: omvårdnad med fokus på barnet, omvårdnad med fokus på modern och omvårdnad med fokus på tvärprofessionellt team. Slutsats: Genom att ge omvårdnad för barn med funktionsnedsättning med dessa tre fokusområden är sjuksköterskans interventioner holistiska och täcker alla aspekter i livet. / <p>Röda Korsets sjuksköterskeförening stipendium 2012</p>

Introduction: For children born with physical disabilities, the perspectives and actions of their parents prove significant to their childhood developmental outcomes clinically, educationally, socially, and with regard to community participation. The lived world and perceptions of parents who have children with disabilities however is not well investigated. This study sought to understand parents’ framing of theirs and their children’s disability experiences. Family systems together with family systems intervention models, and disability theory were used to provide structure to interview instrumentation and subsequent analysis. Child-centered and ecologic influences were also used to track the transformative processes over time that infuses parental themes. Methods: Methods for this study followed traditions of heuristic phenomenology. Open-ended parental interviews, written and spoken, together with field notes were used to explore the meanings given to disability. Analysis focused on collective descriptions and critical themes. Results: The nine parents in this study revealed four dominant themes around which their children’s lived lives were both understood and framed. Navigating normal for us; Our pride and joy; Anything but disability; Lived lives, looking back. Each is expressed in the words of parents who reared a child with disabilities into adulthood. Discussion and Recommendations: Parental disability frameworks differ from medical model frameworks and those of disability studies but share similarities with each. The parent themes provided holistic views of what these families have lived and learned. Their perspectives provide potentially vital markers and points of inquiry for interventionists and team members who work with children and families. Themes may also offer categorical means to explore well-being and child outcomes. Additionally, the themes were transformative and empowering for parents, both in the discussion of individual matters and in their narratives. All participants iterated that they welcomed having their voices invited and heard.