Bakgrund: I Sverige vårdas ungefär 10% av de barn som föds på en neonatalavdelning. Inom neonatalvården är familjecentrerad omvårdnad väl etablerad där barnsjuksköterskan har en central roll i att arbeta med hela familjen. Många av de inneliggande barnen på en neonatalavdelning har äldre syskon. Flera neonatalavdelningar har under perioder haft tillfälliga besöksrestriktioner för syskon på grund av risk för smitta. Syfte: Att beskriva barnsjuksköterskans upplevelser av att vårda familjer på en neonatalavdelning där syskon inte fått vistas på grund av tillfälliga besöksrestriktioner. Metod: Kvalitativ metod med induktiv ansats användes. Semistrukturerade intervjuer utfördes med sju barnsjuksköterskor. Data analyserades med kvalitativ manifest innehållsanalys. Resultat: Analysen av insamlad data resulterade i tre kategorier: Besöksrestriktionernas negativa inverkan på föräldrars situation, Besöksrestriktionernas inverkan på barnsjuksköterskans arbetegentemot familjen samt att arbeta med hela familjen i centrum. Barnsjuksköterskorna upplevde att de tillfälliga besöksrestriktionerna för syskon medförde en stress hos föräldrarna, en känsla av otillräcklighet hos specialistsjuksköterskorna samt att den familjecentreradeomvårdnaden blev svår eller omöjlig att erbjuda. Slutsats: Barnsjuksköterskan upplevde att föräldrar, barnsjuksköterskor samt den familjecentrerade omvårdnaden påverkades negativt av de tillfälliga besöksrestriktionerna för syskon. En familjecentrerad omvårdnad är gynnsam för hela familjen, vilket bör tas hänsyn till vid framtidabeslut angående tillfälliga besöksrestriktioner för syskon. / Background: Approximately 10% of children born in Sweden are cared for in a neonatal unit. Familycentered care is well established in neonatal care, where the pediatric nurse has a central role in working with the whole family. Many of the children cared for in the neonatal units has older siblings. Several neonatal units have, during periods of time, had temporary visitation restrictions for siblings due to the risk of infection. Purpose: To describe the pediatric nurse's experiences of caring for families in a neonatal unit where siblings have not been allowed to stay during temporary visitation restrictions. Method: This study has a qualitative design with inductive approach. Semi-structured interviews were conducted with seven pediatric nurses. Data were analyzed with qualitative manifest content analysis. Result: The analysis of the collected data resulted in three categories The negative impact of visitation restrictions on parents' situation, The impact of the visit restrictions on the pediatric nurse's work with the family. The pediatric nurses experienced that temporary visitation restrictions for siblings led to stress among the parents, a feeling of insufficiency among the specialist nurses and that family-centered care became difficult or impossible to offer. Conclusion: The pediatric nurses experienced that parents, pediatric nurse´s and family-centered care were negatively affected by the temporary visitation restrictions for siblings. Family-centered care is beneficial for the whole family, which should be considered in future decisions concerning temporary visitation restrictions for siblings.

Sibling contact (synchronous or asynchronous) in young adulthood may have implications for individual well-being (health, life satisfaction & depressive symptoms). This link may be moderated by each individuals' traits, specifically autistic characteristics. Current literature has examined sibling contact, mediums of contact, autism relationships, but has yet to consider sibling contact moderated by autistic traits. This study analyzed data from 390 young adults 61% female, mean age = 25.65) who gave self-reports over two collection waves. Structural Equation Models found that regardless of autistic traits, synchronous contact was linked with increased life satisfaction as well as lower depressive symptoms, and asynchronous contact was linked with increased life satisfaction. Interactions between each type of contact and autistic traits found that for those lower in autistic traits, increases in each type of contact was linked with greater life satisfaction, and higher levels of asynchronous contact was linked with lower depressive symptoms, for those with lower levels of autistic traits. Autistic traits do moderate the process of siblings communicating and create a neutral space for those who are higher in traits. Young adults should prioritize sibling contact to improve their life satisfaction and depressive symptoms, and clinicians should encourage sibling contact in young adulthood.

La famille est une ressource potentielle pour les personnes malades, mais la fratrie est moins souvent étudiée que les parents. Il est important de comprendre ce que vivent les frères et sœurs d’un enfant atteint d’une maladie létale comme la drépanocytose, maladie génétique se manifestant par des crises de douleur et par l’anémie chronique. S’inscrivant dans une approche compréhensive, cette thèse a exploré, via l’entretien et le dessin de la famille, le vécu de 4 frères et 10 sœurs d’enfants atteints de drépanocytose rencontrés au Cameroun dans 9 familles différentes. L’analyse des entretiens et celle des dessins mettent montrent que les enfants donnent sens à la maladie en s'appuyant sur des représentations traditionnelles et occidentales. Ils ressentent des sentiments d’impuissance, de culpabilité, de honte et vivent le malade comme étrange durant les crises. Ils disent avoir peur d’être atteints à leur tour et désirent/craignent la mort de l’enfant malade. Chacun se sent seul, la fratrie n’est pas une ressource et parler de la maladie est problématique. L’enfant malade est vécu comme une victime passive, pas comme un frère. Cette thèse montre les spécificités du vécu de ces enfants et souligne comme d’autres travaux sur la fratrie la nécessité de proposer un accompagnement aux frères et sœurs et à l’enfant malade pour qu’il puisse être/devenir un enfant parmi les autres. / The family is a potential social resource for sick people. However, under such circumstances, siblings are less often considered and even studied than parents. It is important to understand how siblings of a child with a chronic condition such as sickle cell disease cope with the situation. This genetic disease is characterized with pain and chronic anemia, generally unpredictable. This dissertation explored the experiences of 4 brothers and 10 sisters of children with sickle cell disease met in 9 different families in Cameroon through the clinical interview and the family drawing. The analysis of interviews and the analysis of family drawings highlight the children give meaning to the disease by relying on traditional and Western representations. They have feelings of helplessness, guilt, shame and experience the sick as strange during crises. They are afraid of being contaminated as well while having ambivalent feelings whereby they wish for the sick sibling’s death while at the same time exhibiting fear of the same. They feel lonely, siblings are not a resource and talking about the disease is a challenge. The sick child is perceived as a passive victim, not like a brother. This dissertation shows the specificities of the experiences of these siblings and emphasizes the need to offer a listening ear among them and the sick child so that he/she can be/become a child among others.

Bakgrund: När ett barn vårdas på en neonatalavdelning påverkas hela familjen och syskon riskerar att känna sig åsidosatta. Barnsjuksköterskor ska arbeta familjecentrerat vilket innebär att varje familjemedlems behov beaktas. Syskon har rätt att få vara delaktiga under vårdtiden och få anpassat stöd utifrån ålder och individuella förutsättningar. Barnsjuksköterskor är ofta omedvetna om vikten av att stödja syskon och det saknas studier inom området. Syfte: Syftet var att beskriva barnsjuksköterskors erfarenheter av att stödja syskon till barn som vårdas på en neonatalavdelning.  Metod: Studien var av kvalitativ design med induktiv ansats. Ett ändamålsenligt urval genomfördes som resulterade i 13 specialistutbildade och grundutbildade sjuksköterskor från åtta olika sjukhus som arbetat på en neonatalavdelning minst ett år. Semistrukturerade intervjuer genomfördes digitalt och analyserades enligt Elo och Kyngäs (2008) innehållsanalys.   Resultat: Innehållsanalysen resulterade i två generiska kategorier: Främja syskons delaktighet och samverka i team. Barnsjuksköterskor gav stöd till syskon genom att skapa en relation med dem, bemöta deras behov samt involvera dem i omvårdnaden av det sjuka barnet. Vidare var det av vikt att ha en anpassad miljö samt samarbeta med andra professioner, kollegor och familjen för att kunna stödja syskon på ett bra sätt. Slutsats: Barnsjuksköterskor har en viktig roll i att stödja syskon för att de ska känna sig delaktiga och inte bli åsidosatta. Att tillämpa en familjecentrerad omvårdnad är betydelsefullt för att stödja syskon. / Background: When a child is cared for at a neonatal unit the whole family gets affected, siblings are at risk of feeling neglected. Pediatric nurses should establish family-centered care where family members are taken into consideration. Siblings have the right to be involved and supported based on age and needs. Pediatric nurses are many times unaware about the importance of supporting siblings and there is also a lack of studies within this area. Aim: The aim was to describe the pediatric nurses’ experiences to support siblings of children that are cared for at a neonatal care unit.  Method: The study has a qualitative design with an inductive approach. An expedient selection was established which resulted in thirteen with specialist nurses and general nurses from eight different hospitals. All informants had at least one year of experience in working at a neonatal unit. Semi-structured interviews were preformed digitally and analyzed according to Elo and Kyngäs content analysis.  Result: The content analysis resulted in two generic categories: Promote siblings’ involvement and cooperate in teams. Pediatric nurses supported siblings through establishing a relationship with them, meeting individual needs and involvement in the care of the sick child. Environment and pediatric nurses’ collaboration with professions as colleagues and family members was also essential in supporting siblings.  Conclusion: Pediatric nurses are important in supporting siblings through making them feel included and not neglected. Family-centered care is also meaningful when giving support.

Syftet med denna studie var att undersöka vilka tankar och uppfattningar som vuxna syskon har kring ett omsorgsansvar för ett syskon med intellektuell funktionsnedsättning (IF). Det empiriska materialet har inhämtats med hjälp av sex semistrukturerade intervjuer med vuxna personer som vuxit upp tillsammans med ett syskon med IF. Materialet har bearbetats utifrån tematisk analys där resultatet har diskuterats i relation till systemteori, rollteori samt tidigare forskning. Resultatet visar att erfarenheten att växa upp med ett syskon med IF är mestadels positiva och påvisar starka familjeband. Begreppet omsorgsansvar definierades i studien, samt att det visade sig att ansvaret för syskonen förändras i takt med att de växte upp och behoven förändrades. Studien visar att ytterligare forskning bör fokusera på att utveckla stöd för en bra övergång gällande omsorgsansvar från föräldrar till de vuxna syskonen. / The aim of this study was to investigate what thoughts and perceptions adult siblings have about caregiving responsibility for a sibling with an intellectual disability (ID). The empirical material has been obtained through six semistructured interviews with adults who have grown up with a sibling with ID. The material has been processed based on thematic analysis where the results have been discussed in relation to systems theory, role theory and existing research. The results indicate that the experience of growing up with a sibling with ID is mostly positive and shows strong family relationships. The definition of the concept of caregiving responsibility was defined in the study, and it turned out that the resoponsibility of their siblings changed as they grew up and as such, their needs in means of care. The study indicates that further research should focus on developing support for a positive transition of caregiving responsibilities from parents to adult siblings

No description available.

Att växa upp tillsammans med ett syskon med funktionsnedsättning kan innebära utmaningar. Trots detta beskrivs syskon till barn med funktionsnedsättning som en bortglömd grupp i det sociala arbetet. Syftet med studien var att undersöka hur vuxna personer beskriver sin uppväxt tillsammans med ett syskon med intellektuell funktionsnedsättning (IF), med fokus på hantering av svåra situationer och känslor som kan uppstå i relation till sitt syskons funktionsnedsättning. Sju kvalitativa intervjuer genomfördes med vuxna personer som vuxit upp med ett syskon med IF. Resultatet visade att en uppväxt tillsammans med ett syskon med IF är berikande och kärleksfull. Samtidigt innebär syskonskapet ett ansvarstagande, oroskänslor och brist på uppmärksamhet från föräldrarna. Hanteringsstrategier för att handskas med svåra situationer och känslor identifierades. En diskussion har förts rörande resultatet i relation till teorierna KASAM och Coping samt tidigare forskning. Studien visar att ytterligare forskning behövs kring individer som vuxit upp med ett syskon med IF. / Growing up with a disabled sibling can involve real challenges. Despite this, siblings of children with disabilities have been a forgotten group within social work. This study ́s aim was to investigate how adults describe their upbringing alongside a sibling with intellectual disabilities (IF). Focusing specifically on managing difficult situations and emotions that emerge in relation to the siblings' disability. Seven qualitative interviews were done with adults who grew up alongside an IF sibling. Results show that an upbringing alongside an IF sibling is both enriching and loving. Siblinghood involves certain responsibilities, sets of emotional worry and lack of engagement from parents. Strategies of coping/managing with difficult situations and emotions were identified. The findings were discussed in relation to the KASAM and Coping theories as well as against earlier research. The study shows that further research is needed on persons who grow up alongside an IF sibling.

No description available.

Sibling relationships are dynamic within any family context and disabilities add a different and even more complex dimension to a family context. In addition, inclusion is a relatively new concept in South Africa, especially as an inclusive society. This means that it is challenging for a family that has children with disabilities to live and function in the greater society as children with disabilities have specialised needs and expectations. However, siblings of children with disabilities have their own needs and expectations as participating individuals within a family context and within society; therefore it is of relevance to be fully aware of their personal views, perceptions, understanding and challenges they are confronted with. The primary aim of this study was to gain a rich and in-depth understanding of how the disabilities of a child could impact on a non-disabled sibling. With the above mentioned taken into account, siblings of children with disabilities are faced with an array of unique challenges that may change as the siblings develop, therefore, this study focused on siblings who are in their middle childhood phase (six to twelve years old). Qualitative research methods were applied to gain an in-depth understanding of the children‘s experiences and views. The review of the literature provided the theoretical framework against which the qualitative research was conducted. Semi-structured interviews were constructed from the comprehensive literature review. Observations and documents were also used as research instruments to collect descriptive and supportive data. Interpretations were made from the data collected. The literature review exposed and recognised variances regarding sibling experiences about living with children with disabilities. Five information rich participants were interviewed. The findings of this empirical investigation revealed that not all the siblings identified the same experiences as shared experiences of being siblings to children with disabilities. Therefore, it is recommended that the challenges these siblings are faced with should be taken into account since it has been revealed that there seems to be a need to support these siblings and their families. The whole family is a nested system interacting with each other, within the family system and with other systems beyond the family system, including the wider community and society. Thus, siblings need regular, understandable and updated information as they grow up, regarding the challenges the families are faced with, pertaining to the disabilities experienced, within this nested system. / Psychology of Education / M. Ed. (Guidance and Counseling)

Mothers and siblings of children with autism incur stressors that impact their well-being more adversely than mothers of children with ADHD or normally developing children. In Study 1, twenty-six mothers of children with autism (Group 1) were compared to 24 mothers of children with ADHD (Group 2) and 24 mothers with normally developing children (Group 3). All families included a normally developing child (ages 4 to 12). Measures to delineate levels of maternal functioning were administered. Results for Study 1 indicated that mothers of children with autism had higher levels of psychological symptomatology, higher parenting stress, poorer perceptions of their family environment and their ability to parent the siblings, and higher perceptions of internalized problems of the siblings than mothers with normally developing children. These findings support the literature stating that mothers of children with autism may experience increased levels of maternal stress. The reciprocal nature of the parent-child relationship suggests that parents should be involved in meeting the needs of siblings in these families. A subgroup of Group 1 mothers participated in a parent group that occurred simultaneously with a sibling group. Mothers were randomly assigned to participate in a parent/sibling group, a sibling only group, or a wait-list group. Intervention efficacy was assessed using Study 1 measures plus measures designed specifically for the intervention. Overall results of study 2 indicated that mothers in the deluxe intervention perceived their parenting of the siblings to have improved after the intervention when compared to the standard and wait-list groups. This suggested that concurrent mother/sibling intervention provided the mothers with beneficial information and contributed to their enhanced sense of competence about parenting the siblings. In addition, mothers in the deluxe intervention perceived their family environment and the behaviors of the sibling to get worse at post-intervention, but return to baseline over time. This suggests that the intervention may have initially brought some difficulties to the surface that were resolved over time. Results will be discussed with their implications for further research and clinical intervention.