Thesis advisor: Judith A. Vessey / Background: The number of children with medical complexity (CMC) cared for by parental caregivers is increasing in the United States. Studies reveal parental caregivers experience significant caregiver burden, often attributed to the disease management required by CMC. However, literature has also identified numerous systemic challenges that arise while caring for CMC at home. The impact of systemic challenges on parental caregiver burden has not been examined, thus, the purpose of this dissertation is to explore the relationship between these systemic challenges and parental caregiver burden. Methods: Three studies were completed to explore this relationship. An integrative review of literature from 2014-2023 was completed to identify systemic challenges within the home care system and whether parental caregivers attribute burden to these challenges. A case-control secondary analysis of the National Survey of Children’s Health compared levels of burden between parental caregivers and parents of children without medical complexity as they relate to systemic challenges. Lastly, a qualitative descriptive study was conducted with parental caregivers living in Massachusetts to examine their experiences of caring for CMC. Results: The integrative review of 10 articles revealed a dynamic and interconnected relationship between systemic challenges and parental caregiver burden. The secondary analysis comparing 1,352 parents (n = 676 parental caregivers) revealed significant associations and increased odds of experiencing burden among parental caregivers while navigating systemic challenges. Finally, three themes capturing the experiences of parental caregivers (N=11) emerged from collected qualitative data; lack of discharge preparedness causes emotional distress, care becomes increasingly complex creating new unanticipated challenges, and the psychological toll of parents assuming provider role. Conclusion: The findings from this dissertation provide data-driven evidence to support a relationship between systemic challenges of caring for CMC and parental caregiver burden. This greater understanding of parental caregiver experiences highlights the need for a more holistic perspective in evaluating the care of CMC at home such that systemic challenges, and not a child’s medical needs, are the focus of future exploratory, intervention, and health policy work. / Thesis (PhD) — Boston College, 2024. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.

No description available.

Thesis (MEdPsych)--University of Stellenbosch, 2002. / ENGLISH ABSTRACT: My study aims to explore the feelings of and coping strategies used by a group of mothers of young children with an intellectual disability. I used two validated questionnaires and, at a later date, a semi-structured interview with each research participant. My analyses of the questionnaires' data provided me with tentative themes for inclusion during the semi-structured interviews. The combination of quantitative and qualitative research methodologies resulted in the confirmation and expansion of some of the data, but contradictions between other data. I used lay theory as one explanation for the contradictory findings. My study found that the mothers of young children with an intellectual disability experience a range of feelings and use a combination of different coping strategies, a pragmatic coping style being common to all the participants. I conclude by acknowledging the inherent capabilities of my research participants and encouraging service providers to empower parents of young children with an intellectual disability. / AFRIKAANSE OPSOMMING: Die doel van die studie is die ondersoek van gevoelens en hanteringstrategiee van 'n groep moeders vanjong kinders met 'n kognitiewe gestremdheid. Ek het aanvanklik gebruik gemaak van twee geldige vraelyste en na afloop daarvan is 'n semigestruktureede onderhoud gevoer met elke deelnemer. Tentatiewe temas verkry uit geanaliseerde vraelys data is ook gebruik/ingesluit gedurende die semi-gestruktureede onderhoud. Die kombinasise van kwantitatiewe en kwalitatiewe navorsingsmetttodologiee het gelei tot die bevestiging en uitbreiding van sekere data, maar was ook weer teenstrydig met van die ander data. Ek het leke teorie gebruik as verklaring vir die teenstrydighede. My studie het bevind dat hierdie moeders 'n wye verskeidenheid gevoelens ervaar en dat hulle ook van verskeie hanteringstrategiee gebruik maak. Die pragmatiese hanteringstyl was die mees algemene onder die deelnemers. Samevattend het ek erkenning verleen aan die inherente vermoens van die deelnemers en ook diensverskaffers aangemoedig om ouers van jong kinders met 'n kognitiewe gestremdheid te bemagtig.

Bakgrund: Palliativ vård handlar om att ge stöd till patienten och anhöriga under och efter vårdtiden. De ”6 s:n” är en arbetsmodell inom palliativ vård där patienten har rätt till självbestämmande och att upprätthålla sina sociala relationer, även stöd till anhöriga ingår. Anhöriga har en betydelsefull roll i den palliativa vården, deras närvaro skapar möjlighet för den döende att vara hemma i livets slutskede. Syfte: Syftet var att beskriva anhörigas upplevelse av palliativ vård i hemmet under livets slutskede. Metod: Litteraturöversikt baserad på 15 vetenskapliga artiklar från fem olika länder med kvalitativ ansats. Resultat: Fem kategorier identifierades kopplade till anhörigas upplevelser: Palliativa teamets inträde i hemmet, anhörigas vårdansvar, den medicintekniska utrusningens inverkan på vardagslivet, känslor och konsekvenser för anhöriga samt förbättringsmöjligheter och anhörigas uppfattning om palliativ vård. Slutsats: Anledningen till anhörigas vårdansvar var löftet att få dö hemma, uppgiften upplevdes krävande och gav konsekvenser på sömnen och deras fysiska och psykiska mående. Detta var genomgående i hela litteraturöversikten. Vården i hemmet sågs som den rätta platsen att dö på för alla parter, endast en anhörig uttryckte avsky för situationen. Enligt anhöriga var stödet bra dock fanns det ett ökat behov av mer resurser för fullständig trygghet. / Background: Palliative care is about providing support to both the patient and family during and after the time of care. The “6 s:n” is a working model in palliative care where the patient has the right to self-determination and to maintain their social relationships, which includes support to relatives. Relatives have an important role in palliative care, their present creates opportunity for the dying person to be at home in the final stages of life. Aim: The aim of this study was to describe relative’s experiences of palliative home care during the final stage of life. Methods: A literature review based on 15 scientific articles from five different countries with a qualitative approach. Results: Five categories were identified related to relatives experiences: The entry of palliative home care, relatives caring role, the impact of medical technology on everyday life, feelings and consequences for relatives and also improvement opportunities and relatives comprehend about palliative home care. Conclusions: The promise was the reason for relatives caring role, the caring role was an demanding task and gave impacts on their sleep and their physical and mental needs. This was consistently throughout the whole literature review. For all parties the home was seen as the right place to die, only one relative expressed disgust for the situation. According to relatives the support was good, but to complete full security for them it was an increased need for more resources.

A sample of 22 persons who care for relatives exhibiting initial symptoms of senile dementia were administered paper-and- pencil questionnaires to determine their level of subjective burden and psychological symptomatology. Each participant's attributional style was measured on an internal-external dimension, and their causal attributions regarding their relative's symptomatic behaviors were assessed. Results indicated that attributional style did not predict specific attributions about illness-related behaviors, but the tendency to not blame an afflicted relative for their behavior was predictive of subjective burden and symptoms of depression and anxiety. Subjective burden was found to predict feelings of hostility in caregivers.

The movement to increase the number of group home programs for the mentally retarded/developmentally disabled is present in the state of Oregon. The Boundary Street group home, located in Portland, was established as a result of this movement. As a rather typical group home program, it is subject to many of the program concerns and evaluation needs experienced by similar services. This point represents the ultimate reason for this paper. The primary purpose will be to develop a program evaluation system that will be appropriate and beneficial in meeting the evaluation needs of the Boundary Street group home. Because the Boundary Street group home is similar in principle and design to other group homes in Oregon, a second purpose of this project will be to develop an evaluation system that can be beneficial to other programs.

No description available.

Thesis (M.S.W.)--University of Hong Kong, 1985.

Forskningen visar att språket är viktig när det kommer till vård. Denna studie syftar till att undersöka hur vårdgivare inom hemtjänsten hanterar och uppfattar språksvårigheter med äldre invandrare som inte kan svenska. För att besvara syftet har kvalitativa, semi-strukturerade intervjuer genomförts med sex stycken vårdpersonal inom hemtjänsten. Resultatet visar att språksvårigheter är vanligt förekommande men att det inte alltid behöver vara ett problem. För att hantera språkskillnaderna användes bland annat teckenspråk, kroppsspråk, ögonkontakt samt beröring. Utförliga besöksplaner, kontaktmannaskap och kontinuitet användes som arbetsredskap för att förebygga missförstånd och underlätta kommunikationen. Det rådde olika meningar huruvida de äldre invandrarna var ensamma och isolerade. Personalen upplevde att de äldre upplevde språksvårigheterna som jobbiga, blev ledsna, arga och kände hopplöshet. Skapandet av goda relationer påverkades inte av språksvårigheterna ansåg fyra av sex intervjupersoner. Antaganden användes inte för att underlätta språksvårigheterna då de behandlade alla individuellt. Tillmötesgående, förtroendeingivande, sunt förnuft och vänlighet var ord som förknippades med positivt bemötande. / Research shows that language is important when it comes to healthcare. This study aims to investigate how caregivers in home care handle and understand language difficulties with older immigrants who don’t speak Swedish. To answer the question qualitative, semi-structured interviews were conducted with six health workers in home care. The result shows that language difficulties are common but not always need to be a problem. To deal with the different languages following were used; sign language, body language, eye contact and touch. Detailed visit plans, contact persons and continuity were used as tools to prevent misunderstandings and to facilitate communication. There was a difference of opinion whether the older immigrants were alone and isolated. The staff felt that the older experienced language difficulties hard, that they were sad, angry and felt hopelessness. Four interview persons thought that the establishment of good relations were not affected by language difficulties. Assumptions were not used to facilitate language difficulties since they treated everyone individually. Accommodating, trustworthy, good sense and kindness were words that were associated with positive reception.

This thesis is qualitative study of the perceptions of aged Italian women in receiving care. It examines intra-ethnic group differences between Italian-Immigrant and Italian-Canadian women, and their definition of the experience of receiving care. Also, it addresses gender, class, and ethnicity issues which have implications for social work practice, policy, and research. / Sixty-one interviews were conducted with thirty participants, over the age of sixty-five. Participants were interviewed in their treatment environments with follow-up interviews in their home settings. Semi-structured in-depth interviews documenting these women's life histories, as well as participant observation, were the qualitative methods used to collect data. Interview transcripts and field notes were analyzed qualitatively to identify similarities and differences in participants' perceptions as care-receivers. A feminist theoretical perspective was applied to the discussion of the data. / The study suggests that differences exist between aged Italian-Immigrant and Italian-Canadian women care-receivers. These differences are directly related to specific personal and social factors which nurture and oppress them. Aged Italian-Canadian women were found to have more resources, greater independence with their supportive alliances, and higher levels of self-esteem and life satisfaction than aged Italian-Immigrant women. The findings provide insight into resources these women developed to deal with the constraints imposed on them by their gender, class, and ethnicity. / The study suggests an integrated-interactive approach of practice, policy, and research to implement changes so as to meet the needs of these individuals. The study recommends that a feminist social work approach be adopted in the educational curriculum for the training of social work professionals.