Bakground:  When someone is suffering from incurable disease, life changes both for the person, but also for the relatives. More and more get cared for in the home and relatives becomes more involved in care today. Knowledge of the relatives' experiences of palliative care at home is therefore of importance to the district nurse in the home healthcare system to get further aspects of how care can be improved, hence the present thesis work is important. Aims: The purpose of this meta-synthesis was to get a better understanding of the family caregiver’s experiences of palliative care at home, by integrating qualitative international research.  Method: The method used was Noblit and Hares meta-ethnography and 16 qualitative articles were analyzed and synthesized.  Resultat: The family caregiver’s experiences of palliative care at home represented three themes: living with the dying, caring for the dying and interacting with the professional care. The result shows that the experience of caring for a dying relative at home can feel rewarding but at the same time be very stressful both mentally and physically. Caring for a dying relative at home changes life and relationships. The family caregivers’ role as caregiver was a major responsibility and limited their own lives. This responsibility required help from professional caregivers through support and information.  Conclusions: The present master thesis provides a better understanding of the needs of family caregivers, which may facilitate for healthcare professionals in the encounter with these persons and may also motivate to apply a family-focused approach. / Bakgrund: När någon drabbas av obotlig sjukdom förändras livet både för den drabbade, men också för de anhöriga. Allt fler vårdas i hemmet och anhöriga blir mer involverade i vården idag. Kunskap om anhörigas upplevelser av palliativ vård i hemmet är därför av vikt för att distriktssköterskan i hemsjukvården ska få ytterligare aspekter på hur vården kan förbättras, därmed är föreliggande examensarbete angeläget.  Syfte: Syftet med denna metasyntes var att genom att integrera kvalitativ internationell forskning skapa förståelse av anhörigvårdares upplevelser av palliativ vård i hemmet.  Metod: Metoden som tillämpades var Noblit och Hares metaetnografi där 16 kvalitativa artiklar analyserades och syntetiserades.  Resultat: Anhörigvårdares upplevelser av palliativ vård i hemmet kunde beskrivas i följande tre teman: att leva med den döende, att vårda den döende samt att samverka med den professionella vården. Resultatet visar att upplevelsen av att vårda en döende närstående i hemmet kan kännas givande men samtidigt vara mycket påfrestande både psykiskt och fysiskt. Att vårda en döende närstående i hemmet förändrar livet och relationerna. Vårdarrollen innebar ett stort ansvar som begränsade anhörigvårdarnas egna liv. Ett ansvar som krävde stöttning från hälso- och sjukvård i form av stöd och information.    Slutsats: Föreliggande examensarbete ger en ökad förståelse för anhörigvårdares behov vilket kan underlätta för sjukvårdspersonal som ska möta dem och kan även motivera till att tillämpa ett familjefokuserat förhållningssätt

In 2011 there were an estimated 3.9 million orphaned children in South Africa, many of them orphaned by HIV/AIDS. These children are at high risk for developing psychosocial and mental health problems. The National Strategy for the care of orphans and other vulnerable children (OVCs) recognizes the importance of psychosocial support but there are few specific guidelines on best practice and little research on the effectiveness of psychosocial support programs. There is even less research capturing the perspectives of front-line staff and caregivers. This master’s thesis project conducted a case study of an NGO that provides foster care for OVCs in the Western Cape of South Africa. Semi-structured interviews were carried out with 14 foster mothers, four social workers and one administrator of the HomeFromHome organization. Interviews explored the experiences, opinions and concerns of participants regarding psychosocial support and the respondents’ views on the (1) main challenges they face in providing psychosocial support (2) what they see as the most effective forms of support and (3) their recommendations for policy changes. Responses highlighted the psychosocial challenges faced by OVCs, those caring for children, and program staff. The research findings support the existing literature, which promotes psychosocial support as essential for orphaned, and vulnerable children. This case study found that HomeFromHome social workers, foster mothers and administration want increased levels of psychosocial support for both children and caregivers. Respondents identified foster mothers and a primary loving caregiver as the most significant form and source of psychosocial support for the children. An analysis of the participant responses identified several areas that warrant further investigation for future policy and program development. These include: the different forms of alternative childcare, the role of the community and the church, the gap between policy and implementation, gendered issues, the aging out process, and issues concerning biological families.

This study evaluated the effectiveness of a procedure for teaching a caregiver to shape vocal language in a young child with autism. A multiple baseline design was employed to assess caregiver use of shaping procedures, child vocal language progress, and the social validity of the procedures. Following baseline and introductory sessions, the coach and caregiver reviewed video from the previous session and the coach gave descriptive feedback to the caregiver about her performance. Following the review of the videotaped segment, procedures to increase skills were selected and practiced. Rates of responsive opportunity arrangement, model presentation, responsive model delivery, and responsive event delivery, as well as the child's rate of requests, vocalizations, diversity of vocalizations, and social validity were measured. Data suggested that the procedures effectively taught the skill of shaping to a caregiver, which in turn seemed to produce increases in the child's vocal responding.

Based on the survey results of 150 South Korea toddler caregivers about training needs, I developed a relationship-based approach for a toddler caregiver training program. The training program was modified using suggestions provided by 6 South Korean professors, who were asked to review the program. Survey findings revealed that: (a) All participants (toddler caregivers) perceived that it is necessary for caregivers to attend training. However, most (72.2%) found that it was difficult to attend training programs more than 1 time per year because it was hard to find a substitute teacher (64%). Participants desired to attend training programs on toddler care because of the lack of in-service education (26%), curriculum (24%), and training programs (15.3%); (b) Caregivers who had the third-degree caregiver certification preferred to learn parent education more than child development. However, caregivers who had a higher degree of caregiver certification preferred to learn child development more than parent education; and (c) Caregivers who had more than 5 years of teaching experience preferred to learn about the teacher's role more than caregivers who had fewer than 4 years of teaching experience. Future studies need to evaluate the effect of this relationship-based training program for toddler caregivers in relation to improvement in the quality of child care and interaction between caregivers and toddlers. A large-scale study would increase the generalizability of research findings. A larger sample size from different cities in South Korea and random sampling would generate more reliable findings.

Behavioral skills training (BST) is often used to train caregivers to implement various behavior management procedures; however, additional strategies are sometimes required to promote the generalization of skills from a contrived setting to the natural environment. Generalizing skills to the natural environment requires that the caregiver's behavior transfer from control of stimuli in the contrived setting to stimuli in the natural environment, and the skill continues to be performed with high levels of accuracy. The purpose of this study was to assess the extent to which caregivers generalized the use of social reinforcement, in the form of descriptive praise, from the contrived setting to the natural environment. When caregivers failed to respond to opportunities, a progressive prompt delay was used to bring caregivers' responding under the control of relevant client behavior; feedback was used to improve the accuracy with which caregivers implemented reinforcement. Five caregivers in a large residential facility participated in the study; single-opportunity probes were used to assess caregiver's identification of opportunities and accuracy in implementing reinforcement for two defined client behaviors, compliance and appropriate attention-getting behavior. Results of the study suggest that skills failed to generalize from the contrived setting to the natural environment. However, prompting was effective in training caregivers to identify opportunities to provide reinforcement, and feedback improved implementation of reinforcement.

Bakgrund: Då fler patienter önskar att få avsluta sitt liv i hemmet ställs även större krav på anhöriga att kunna vårda i hemmet. För att kunna ge den bästa möjliga vården behöver anhörigas behov och förutsättningar belysas. Syfte: Syftet med litteraturöversikten är att belysa anhörigas upplevelse av att vårda en närstående med cancersjukdom tillsammans med ett palliativt hemsjukvårdsteam. Metod: Studien genomfördes som en litteraturöversikt. Vetenskapliga artiklar söktes fram via databaserna Cinahl, Summon och PubMed. Sökningarna resulterade i tjugo stycken kvalitativa artiklar vilka svarade mot syftet och som sedan granskades och sammanställdes. Resultat: Sammanställningen av artiklarna gav tre huvudteman: Information inför vårdandet, Emotionella påfrestningar och Att vårda tillsammans med palliativa hemsjukvården. De tre huvudtemana gav sedan åtta subteman. En känsla av utanförskap och isolering uppstod hos anhörigvårdaren till följd av att behöva anpassa sig efter patientens dygnsrytm och tillstånd. Kravkänslan och ansvarstyngd lättade hos vårdarna då de kände att även deras behov blev hörsammade och togs i beaktande. Att ha tillgång till palliativt hemsjukvårdsteam dygnet runt ökade trygghet hos anhöriga. Konklusion: För att öka välbefinnandet hos de anhöriga som vårdar en närstående med cancersjukdom i hemmet, behöver sjuksköterskan uppmärksamma och tillmötesgå deras behov av stöd och hjälp. / Background: As more patients wish to end their lives at home, greater demands are also placed on family members to be able to care for their loved ones. In order to provide the best possible care, the relatives needs and prerequisites have to be elucidated. Aim: The aim of the literature review is to explore family caregivers experience of palliative home care when caring for a loved one with cancer.  Method: The study was conducted as a literature review. Scientific articles were searched through the databases Cinahl, Summon and PubMed. The searches resulted in 20 qualitative articles that corresponded to the aim and were then reviewed and compiled.  Result: The compliation of the articles provided three main themes: Information about the care, Emotional stress and Caring together with palliative home care team. The three main themes further provided eight subthemes. A feeling of alination and isolation arose from the caregivers as a result of having to adapt to the patient´s daily rhythm and condition. The feeling of liability and the weight of responsibility eased for the caregivers as they felt that their needs were also listen to and taken into consideration. Having access to palliative home care teams 24-hour a day increased the feeling of security for the caregivers.  Conclusion: In order to increase the well-being of the family members who is caring for a loved one with cancer in the home, the nurse needs to pay attention and meet their need for support and help.

Orientador: Sandra Leal Calais / Resumo: No Brasil há 1,5 milhão de idosos fragilizados e nesta sua dependência surge o papel do cuidador familiar, exigindo a tomada de decisões e a incorporação de atividades que passam a ser de sua inteira responsabilidade. A função de cuidador familiar pode desencadear sintomas depressivos e gerar situações estressantes. Assim, o objetivo deste estudo foi avaliar estresse, depressão, sobrecarga e existência de projeto vital dos cuidadores familiares em tempo integral e parcial de idosos dependentes. Os participantes foram 40 cuidadores e 38 idosos, sendo o Grupo A composto por 17 cuidadores em tempo parcial e 15 idosos e o Grupo B, 23 em tempo integral e 23 idosos. Destes, 45% foram captados da Organização da Sociedade Civil e 55% das redes sociais. Do Grupo A, 76,50% eram sexo feminino, sendo 70,60% filhas dos idosos e o Grupo B teve 91,30% de cuidadores mulheres e 52,20% filhas também. A média de idade do Grupo A foi de 50 anos e a do Grupo B foi de 58 anos, a idade dos grupos variou de 38 a 83 anos. Quanto à classe social, 47,10% dos cuidadores do Grupo A se encontram na classe B2 e 41,20% possuem o Ensino Superior Completo, enquanto no Grupo B 30,40% estão na classe C1 e 30,40% possuem o Ensino Fundamental Incompleto. A média de idade dos idosos do Grupo A foi de 81 anos e do Grupo B foi de 79 anos, sendo a amostra de idosos composta de 85% do sexo feminino. No Grupo A, 52,90% dos idosos apresentam o grau de dependência I e 39,10% do Grupo B, grau de dependência II. Os instrum... (Resumo completo, clicar acesso eletrônico abaixo) / Abstract: In Brazil, there are 1.5 million frail elderly people and in this dependence the role of the family caregiver arises, requiring decision making and the incorporation of activities that become their entire responsibility. The role of family caregiver can trigger depressive symptoms and generate stressful situations. Thus, the aim of this study was to assess stress, depression, burden and existence of a vital project for family caregivers in full and part-time for dependent elderly. The participants were 40 caregivers and 38 elderly, with Group A comprising 17 part-time and 15 elderly caregivers and Group B, 23 full-time and 23 elderly. Of these, 45% were raised from the Civil Society Organization and 55% from social networks. From Group A, 76.50% were female, 70.60% were daughters of the elderly and Group B had 91.30% female caregivers and 52.20% were daughters as well. The average age of Group A was 50 years and that of Group B was 58 years, the age of the groups ranged from 38 to 83 years. Regarding social class, 47.10% of Group A caregivers are in class B2 and 41.20% have completed Higher Education, while in Group B 30.40% are in class C1 and 30.40% have Education Incomplete Fundamental. The average age of the elderly in Group A was 81 years old and in Group B it was 79 years old, with the elderly sample being 85% female. In Group A, 52.90% of the elderly have a degree of dependency I and 39.10% of Group B, a degree of dependency II. The assessment instruments used were the... (Complete abstract click electronic access below) / Mestre

Le diagnostic de cancer et les traitements associés vont entrainer un bouleversement de la vie du patient mais aussi de son entourage, et en particulier des proches-aidants. Ces derniers devenant « aidant » doivent assumer de nouvelles responsabilités qui peuvent entrainer des problèmes de santé, une altération de leur qualité de vie et ainsi de manière générale des difficultés d’ajustement face à la maladie (e.g., altération du fonctionnement émotionnel, physique, social et professionnel, symptômes somatiques, détresse émotionnelle). Les proches-aidants ont ainsi besoin du soutien des professionnels de santé pour faire face à leur rôle d’aidant mais ils rapportent souvent des besoins en soins de support insatisfaits. Ce travail de thèse, inscrit dans un programme de recherche plus global, vise ainsi à mieux appréhender les besoins en soins de support des proches-aidants de patients atteints d’un cancer et leurs déterminants, à travers notamment l’implication des processus émotionnels. La première étude de ce travail a consisté à valider en français une échelle évaluant les besoins en soins de support des proches-aidants de patients atteints d’un cancer. La deuxième étude visait à déterminer des profils de proches-aidants plus à risques d’avoir au moins un besoin en soins de support insatisfait moyen ou fort selon des facteurs intrapersonnels (i.e., symptômes anxieux-dépressifs) et sociodémographiques et médicales (e.g., âge des patients et des proches-aidants, cancer métastatique ou non). Enfin, la troisième étude visait à tester le modèle théorique, validé en amont auprès des patients, selon lequel les compétences émotionnelles des proches-aidants auraient un effet bénéfique sur leurs besoins en soins de support insatisfaits via moins de symptômes anxieux-dépressifs. Ces résultats montrent l’importance de dépister et prendre en charge les besoins en soins de support des proches-aidants, surtout liés à la prise en charge du patient, à l’information et au soutien psychologique et émotionnel. Certains profils de proches-aidants pourraient représenter une population particulièrement à risques de difficultés qui nécessiteraient une attention particulière des professionnels de santé. Enfin, tenir compte des processus émotionnels, notamment des compétences émotionnelles et des symptômes anxieux-dépressifs, parait important pour la prise en charge en soins de support des proches-aidants. / Cancers causes a disruption in the lives of patients and their caregivers. They must assume new responsibilities that can lead to health problems, altered quality of life, and adjustment difficulties (e.g., impaired emotional, physical, social, and professional functioning, somatic symptoms, emotional distress). Thus, caregivers need support from health professionals to cope with their role but they frequently report unmet supportive care needs. This thesis work is a part of a more global research program and aims to better understand the supportive care needs of caregivers of cancer patients and their determinants, in particular through emotional processes. The first study of this work validated the French version of a scale assessing the unmet supportive care needs of caregivers of cancer patients. The second study identified profiles of caregivers at higher risk of having at least one moderate or high unmet supportive care need from intrapersonal factors (i.e. emotional distress) and socio-demographic and medical variables (e.g., age of patients and caregivers, metastatic cancer). Finally, the third study tested the theoretical model of the thesis work, already validated for cancer patients, which considers that the emotional competence of caregivers can reduce their unmet supportive care needs by reducing their anxiety and depression symptoms. The results highlight the importance of identifying and addressing the unmet supportive care needs of caregivers, especially related to cancer care, information, and psychological and emotional support. Some profiles of caregivers may represent a population at higher risk of having difficulties and requiring more attention from professionals. Finally, taking into account emotional processes, including emotional competence and anxiety and depression symptoms, may be essential in the supportive care of caregivers.

The present study utilized multiple-baseline and multi-probe across participants designs to measure both fidelity and efficacy of caregivers as primary interventionists when using trial-based functional analysis (TBFA) procedures. Participants included any caregiver of a child with a medical or educational diagnosis of autism and challenging behavior. Caregiver fidelity of implementation of TBFA procedures was measured across three phases: baseline, training, and independent implementation or generalization. Within the implementation phase, caregivers independently conducted TBFAs on their respective children within the home setting. Fidelity, efficacy, and social validity across each participant were measured. Each caregiver was able to reach fidelity during the training phase, and three out of five caregivers were able to identify a clear behavior function for their child's behavior within the implementation phase of the study. Social validity was evaluated. Results indicate that caregivers may be able to supplement traditional interventionists during the TBFA process. Implications for future practice are reviewed.

(in English): The aim of the thesis is to compare children's ideas about their future after leaving institutional facilities with the view of caregivers. The diploma thesis deals with forms of substitute care, specifics of children in institutional care including emotional deprivation, preparation and leaving the children's home. It analyses children's ideas about education, employment, finances, housing, relationships with the original family, partnership, parenting, and rescue network after leaving the children's home. The thesis combines interviews with children focused on their life ideas and questionnaires that were presented to their caregivers to assess the reality and the possibility of their fulfilment.