<p>The current study empirically tested a model of sibling caregiving topic avoidance, including privacy rule criteria as predictors of topic avoidance and both relationship satisfaction and depression as outcomes of topic avoidance. Associations between topic avoidance and its predictors and outcomes were compared for primary and non-primary caregivers. Additionally, the study tested privacy expectations, including information ownership and caregiving talk preference, as moderators of the associations between topic avoidance and both relationship satisfaction and depression. The current study is grounded in communication privacy management theory, conceptualizing topic avoidance as a strategy for maintaining privacy (CPM; Petronio, 2002). Findings validate CPM propositions related to privacy rule development and privacy turbulence. Findings also further understanding of informal caregiving, sibling communication, and topic avoidance.</p> <p>Over 75% of all eldercare in the United States is provided by unpaid, non-professionals (Family Caregiver Alliance, n.d.). Providing unpaid care has been linked to diminished well-being, including negative physical and mental health effects (Cooper, Balamurali, & Livingston, 2007). However, some scholars argue that caregiving is only detrimental in particular circumstances with some caregivers experiencing more benefits than burdens (Roth, Fredman, & Haley, 2015). The current study proposes that sibling communication is a key factor in determining when caregiving is harmful. </p> <p>Specifically, the current study examines topic avoidance about parent well-being and sibling’s contributions to parental care, including predictors of topic avoidance and the association of topic avoidance with sibling relationship satisfaction and depression. The current study includes a pilot study of 207 participants to develop CPM measures of caregiving topic avoidance, benefit-risk analysis, and information ownership as well as a measure of caregiving involvement (including personal care, routine tasks, and emotional support). The resulting measures are utilizing in a main study of 415 participants, testing models of middle-aged siblings’ topic avoidance.</p> <p>Findings contribute to understanding of informal care, sibling communication, and CPM. Privacy rule criteria, including context, motivation, and risk-benefit analysis, were associated with topic avoidance. Surprisingly, gender and family culture were not strongly associated with topic avoidance. Topic avoidance resulted in relationship dissatisfaction and greater depression when topic avoidance did not align with privacy expectations, resulting in privacy turbulence. Differences emerged for primary caregivers compared with non-primary caregivers, including predictors of topic avoidance and direct effects of caregiving involvement on relationship satisfaction and depression. For primary caregivers, involvement in personal care was associated with greater depression, and involvement in emotional support was associated with less depression. Overall, findings further understanding of privacy management, caregiving, and sibling communication and provide interesting avenues for future research.</p>

The study investigated the experiences of formal caregivers within a community setting, and the emotional experiences of the individual caregiver. There is insufficient research into the subjective experiences and perceived role of the formal caregiver, as previous studies have concentrated on quantifying the role of the family or informal caregiver. Eleven interviews were conducted with participants from a community-based palliative care institution. The interviews explored areas of interest that surround caregiving, considering both the positive and negative factors that caregivers consider influential within the emotional experience, as well as the role of a formal caregiver. The study investigated the emotional challenges, motivations, support mechanisms and the perceived effectiveness of the coping strategies employed. The data was analysed through thematic content analysis, allowing for the selection of the most salient themes and subthemes, which converged around notions of caregiving and the positive and the negative elements within the caregiving experience of formal caregivers. The data was considered in relation to an interpretative phenomenological perspective, which allowed for the contextualisation and interpretation of the knowledge obtained through the study, and the augmentation of this knowledge with the knowledge already existing in the field of caregiving. The themes were able to provide an understanding of how caregivers construct their role as a formal caregiver, in comparison to the informal caregiver, and their perception of the importance of formal knowledge within caregiving. The themes also provided an understanding of the coping mechanisms and the contextual factors that interrelate with a caregiver’s ability to manage the difficulties within caregiving and their emotional reactions. These findings illustrated that community-based caregiving, although subject to significantly more stressors, also has significant positive aspects that could be fostered to operate as protective mechanisms.

Il presente elaborato si colloca entro l’area di ricerca sull’invecchiamento patologico, con particolare riferimento al paziente con diagnosi di demenza moderata e grave e al relativo caregiver; tema centrale è la qualità della vita dei due membri della diade paziente/familiare, e la necessità di diversificare e arricchire l’attività psicologica entro i contesti di ricovero a lungo termine in favore di un miglioramento del benessere della diade stessa. A tale scopo, il lavoro si articola in due studi distinti: nel primo, si propone un intervento di stimolazione musicale individualizzata diretta al paziente con diagnosi di demenza moderata o grave, nel secondo un intervento di reminiscenza che ha come target il familiare. La tesi si articola in tre sezioni: la prima è una cornice teorica di riferimento, la seconda e la terza espongono rispettivamente il primo e il secondo studio sperimentale. Il primo capitolo ha lo scopo di fornire un quadro teorico e empirico aggiornato in merito al tema dell’invecchiamento. Inizialmente viene trattata la questione della “Ageing Society” da un punto di vista globale, delineando nel corso del capitolo le caratteristiche e le criticità legate all’invecchiamento patologico e alla sua gestione entro il Sistema Sanitario Nazionale, con particolare interesse verso la realtà delle Residenze Sanitario-Assistenziali (RSA), contesto entro il quale si sono svolti i due lavori di ricerca proposti. Si tocca infine il tema dell’intervento non farmacologico diretto al paziente. In una seconda parte è descritta la prospettiva del familiare, il concetto di burden e il ruolo della relazione pregressa tra paziente e caregiver da un punto di vista teorico; segue la descrizione degli interventi non farmacologici diretti al caregiver finora proposti in letteratura, ideati allo scopo di alleviare stress legato al ruolo di cura e alle sue implicazioni. Il secondo capitolo ha lo scopo di esporre il primo studio della tesi, che si è occupato di verificare l’efficacia di un intervento di ascolto musicale individualizzato sulla qualità della vita di pazienti con diagnosi di demenza moderata o grave. Per questo motivo, si sono prima di tutto descritti i sintomi comportamentali della demenza, con particolare riferimento alla agitazione psicomotoria e al suo ruolo di indice dello stato psicologico del paziente con deficit cognitivi avanzati. Nella sezione empirica del capitolo viene descritta nei dettagli la modalità di intervento selezionata, gli obiettivi dello studio e i risultati ottenuti in base alla misurazione pre-post delle variabili di outcome selezionate e al confronto tra gruppo sperimentale e gruppo di controllo. Il terzo capitolo tratta il secondo studio del lavoro di tesi, che ha indagato l’efficacia di un intervento di reminiscenza sulla qualità della vita percepita dai familiari di pazienti con diagnosi di demenza afferenti alla RSA Monsignor Bicchierai – Istituto Auxologico Italiano di Milano. Allo scopo di motivare le ragioni della scelta di questa modalità di intervento, si sono descritte le premesse teoriche della teoria della reminiscenza e le sue potenzialità come forma di approccio al paziente anziano; l’idea dello studio è stata quella di applicare tale modalità di intervento sul caregiver, allo scopo di alleviare il burden percepito conseguente al carico pratico e emotivo che la cura della persona cara comporta. Analogamente al secondo capitolo, segue la sezione empirica dello studio, con un esteso approfondimento metodologico e la descrizione e discussione dei risultati ottenuti. Una sezione finale avrà lo scopo di proporre riflessioni e spunti clinici emersi da entrambi gli studi, entro una visione globale della presa in carico della diade paziente/caregiver. / This research thesis refers to pathological aging, with a particular focus on the patient with a diagnosis of dementia and his/her caregiver. The intended central theme is the patient and the caregiver’s quality of life, assuming them as a dyad; the work also concentrated on the need to diversify and enrich the psychological offer within the context of long-term hospitalization. To this end, it is divided into two separate studies. In the first one, we propose an individualized musical intervention directed to the patient with a diagnosis of moderate or severe dementia; in the second the effcacy of a reminiscence intervention that targets the family member is tested. The thesis consists of three separate sections: the first is a theoretical frame, the second and the third expose the first and the second experimental study respectively. The first chapter aims at providing an updated theoretical and empirical framework on the subject of aging. The problem of the "Aging Society" is firstly discussed; among the chapter the characteristics and the critical issues related to pathological aging and its management are debated. This topic requested a deepening into the features of the italian National Health System, with a particular focus on the reality of Nursing Homes (RSA), within which the two proposed research works were carried out. Finally, the topic of non-pharmacological intervention directed to the patient is treated. The second part describes the caregivers’ perspective, the concept of burden and the role of the prior relationship between patient and caregiver: in order to act on the stress related to the role of care and its implications, non-pharmacological interventions directed to the caregiver according to scientific literature are described. The second chapter objective is to display the first study, which aimed at testing the effectiveness of an individualized music listening intervention on the quality of life of patients diagnosed with moderate or severe dementia. For this reason, the behavioral symptoms of dementia (BPSD) were first described, with particular reference to agitation and its role as an index of the psychological state of the patient with advanced cognitive impairment. In the empirical section of the chapter the intervention is carefully described, together with the objectives of the study and the results obtained based on the pre-post measurement of the selected outcome variables and the comparison between the experimental group and the control group. The third chapter deals with the second study of the thesis work, which investigated the effectiveness of a reminiscence intervention on the caregivers’ perceived quality of life; they belonged to the RSA Monsignor Bicchierai - Italian Auxologic Institute of Milan. In order to support the choice of this modality of intervention, the theoretical premises and its potential use as a form of treatment for dementia patients have been described; the seminal idea of the study was to apply this kind of intervention on the caregiver, in order to relieve the burden resulting from the practical and emotional load requested. Similarly to the second chapter, the empirical section of the study follows, with an extensive methodological study together with a description of the obtained results. A final section had the purpose to think over the clinical ideas emerged from both studies, viewing the dyad patient-caregiver as a single care recipient.

Thesis advisor: Ruth McRoy / Unmet long term care needs are increasingly filled by immigrant home health workers who are primarily female (88%), racial minorities (85%), and from developing countries including Mexico, Caribbean, Philippines, and Africa. The growing numbers of immigrant home health workers are a result of global factors including economic policies, colonial histories with developing countries, and immigration legislation. In addition to macro factors, personal motivations lead migrant home health workers to immigrate and find jobs in the U.S. Once in the U.S., little is known about migrant home health workers' caregiving experiences and work conditions. This study was designed to address this need and explored the personal experiences and viewpoints of the workers. Additionally information on migration histories and work setting was gathered to contextualize caregiving experiences. The study was guided conceptually by caregiving theory on the commodification and devaluation of "care" which can ultimately result in outsourcing care to immigrant women. Qualitative description methods were used to guide the research design, data collection, and analysis of twenty-three semi-structured interviews of female immigrant home health workers in Massachusetts. Interviews focused on three topics: caregiving experiences, reasons for migrating to the U.S., and work conditions. Findings will add to the knowledge base about immigrant home health workers paying particular attention to how workers themselves describe their experience which will in turn inform future policy and program initiatives on inclusion of a multicultural workforce into the long term care system. / Thesis (PhD) — Boston College, 2014. / Submitted to: Boston College. Graduate School of Social Work. / Discipline: Social Work.

Antalet anhörigvårdare i Sverige är många. För att de anhöriga ska orka vårda sina närstående 24 timmar om dygnet, sju dagar i veckan behöver det finnas ett stöd. De anhörigstöd som finns varierar från kommun till kommun. Ett anhörigstöd som har utarbetats för att underlätta insatsbehovet är COAT- Carers Outcome Agreement Tool som syftar till att kartlägga anhörigas behov, planera och följa upp anhörigstöd. COAT har en grund i partnerskapsmodellen och i modellen ses den anhörige som experten på situationen runt den närstående. De studier som är gjorda med anhöriga har mycket positiva resultat. Det är få studier gjorda utifrån personalperspektivet därför avsåg vi att undersöka deras individuella erfarenheter utav att använda COAT. Tio stycken kvalitativa intervjuer med personal är utförda i studien och analyserades med hjälp av en innehållsanalys. Fem kategorier trädde fram i analysen och presenteras i resultatet. I kategorierna beskriver vi det som personalen berättat i intervjuerna. Personalen är uteslutande positiva till instrumentet och de anser att det bör användas i större utsträckning. Diskussionen är formad utifrån våra forskningsfrågor och diskuteras med stöd av tidigare forskning. Vi diskuterar olika begrepp och relaterar dem ur personalens synvinkel gentemot den anhörige och dennes familj. / Program: Specialistsjuksköterskeutbildning med inriktning mot distriktssköterska

Made available in DSpace on 2016-04-28T20:38:47Z (GMT). No. of bitstreams: 1 Valeria Tinoco.pdf: 595466 bytes, checksum: fb549044da8d4642433ed72a99f73636 (MD5) Previous issue date: 2013-11-06 / Conselho Nacional de Desenvolvimento Científico e Tecnológico / This study aimed to assess the experience of mothers of premature infants and understand the repercussions of prematurity on both the motherhood experience and the formation of the mother-child bond. A qualitative research was carried out based on the content analysis of questionnaires completed by 28 mothers whose babies were admitted to Intensive Care Unit. The Attachment Theory was used as theoretical foundation. Two types of motherhood representations were pointed out and associated with caregiving behaviors. The potent motherhood representation wa characterized by the mother's perception of the efficiency of the caregiving system. This representation reveals the existence of healthy coping strategies, which reflects positively on the mother-child bond. The impotent motherhood representation indicates the difficulty of integrating the experience of prematurity with motherhood, which interferes in the caregiving behavior. The conclusion was thq c6ping with the crisis caused by prematurity requires a psychological internal change, so ttiat the experience, which can remain in an active state for a long time, is elaborated. If non¬elaborated, the experience of prematurity may affect the healthy functioning of both the caregiving and attachment systems. The individual ability t? find mea!1ing and . I elaborate experiences was emphasized. It was observed that the participants had their internal working models of caregiving and coping with adversities expanded and enhanced. Interventions by health prof ssionals in this population should focus on the coping and elaboration processes, as well as on the risk and protective factors of the premature motherhood experience / Este estudo teve como objetivo conhecer experiências vividas por mães de bebês prematuros e entender as repercussões da prematuridade na maternidade e na construção do vínculo entre mãe e filho. Trata-se de uma pesquisa qualitativa, baseada na análise de conteúdo de questionários respondidos por 28 mães, cujos bebês estiveram internados em Unidade de Cuidados Intensivos. A Teoria do Apego foi utilizada como fundamentação teórica. Duas representações a respeito do exercício da maternidade foram destacadas e relacionadas aos comportamentos de cuidado. A representação da maternidade potente foi caracterizada pela percepção materna da eficiência do sistema cuidador. Esta representação revela a existência de mecanismos de enfrentamento saudável, o que repercute positivamente no vínculo mãe-bebê. A representação da maternidade impotente apontou para a dificuldade de integração da experiência da prematuridade : à : maternidade, interferindo nos comportamentos de cuidado com o filho. Cohcluiu-se que o enfrentamento da crise gerada pela prematuridade implica em um trabalho psíquico de elaboração da experiência, que pode permanecer em estado ativo durante muito tempo. A experiência da prematuridade não elaborada pode colocar em risco o , funcionamento saudável do sistema de cuidado e de apego. A capacidade individual , t de significar e elaborar as experiências foi ressaltada. Foi possível observar que as participantes ampliaram e modificaram positivamente os modelos operativos internos a respeito do cuidar e do enfrentamento de adversidades. As intervenções dos profissionais de saúde com esta população devem focalizar os mecanismos de enfrentamento, o processo de elaboração e os fatores facilitadores e dificultadores da experiência da maternidade prematura

Dining in a restaurant with a loved one who has dementia can be an ordeal, especially if the expectations of the caregiver do not match those of the patient and the restaurant environment is not suitable for patients with dementia. The size of the dining area, lighting, background music or noise, décor of the room, number of customers, variety of the items on the menu, number of plates and cutlery on the table, in addition to flowers, candles, and other decorations on the table are all potent distractors. There are so many stimuli; the patient can be overwhelmed with information overload and not able to focus on the main purpose of the event: have dinner and especially enjoy the other person’s company. In this case scenario, we present a 62-year-old man diagnosed with behavioral variant frontotemporal dementia (bvFTD). His daughter “invited” him to have dinner with her at a very fancy restaurant to celebrate her promotion at work. Unfortunately, whereas the evening started very well, it had a catastrophic ending. We discuss what went wrong in the patient/daughter interaction and how the catastrophic ending could have been avoided or averted.

Repetitive questioning is a major problem for caregivers, particularly taxing if they are unable to recognize and understand the reasons why their loved one keeps asking the same question over and over again. Caregivers may be tempted to believe that the patient does not even try to remember the answer given or is just getting obnoxious. This is incorrect. Repetitive questioning is due to the underlying disease: The patient’s short term memory is impaired and he is unable to register, encode, retain and retrieve the answer. If he is concerned about a particular topic, he will keep asking the same question over and over again. To the patient each time she asks the question, it is as if she asked it for the first time. Just answering repetitive questioning by providing repeatedly the same answer is not sufficient. Caregivers should try to identify the underlying cause for this repetitive questioning. In an earlier case study, the patient was concerned about her and her family’s safety and kept asking whether the doors are locked. In this present case study, the patient does not know how to handle the awkward situation he finds himself in. He just does not know what to do. He is not able to adjust to the new unexpected situation. So he repeatedly wants to reassure himself that he is not intruding by asking the same question over and over again. We discuss how the patient’s son-in-law could have avoided this situation and averted the catastrophic ending.

Diabetes mellitus is common among older people. Hypoglycemia is a sign of poorly controlled diabetes mellitus and may lead to irritability, agitation, anxiety, hunger, and an excessive food intake, which in turn may make the control of diabetes more difficult. Excessive, inappropriate food intake is also a sign of Fronto-Temporal Dementia (behavioral variant: bvFTD). In this case study, we describe the events leading to an altercation that developed between an older diabetic patient with bvFTD and the staff in an Assisted Living Facility. His first dose of insulin was given early that morning while he was still asleep. He, subsequently, woke up feeling hungry, agitated, and irritable. This, in turn, exacerbated the hyperorality associated with bvFTD. We examine what went wrong in the patient/caregiver interaction and how this potentially catastrophic situation could have been avoided or defused.

Patients with dementia, particularly Alzheimer’s disease, may not recognize that their clothes are dirty. They may see the food stains and discoloration of the clothes and yet because of their agnosia are unable to integrate these observations and deduce that their clothes are dirty and need to be changed. They will, therefore, resist attempts to get them to change clothes, especially if these clothes happen to be their favorite ones. This often causes caregivers to become frustrated, especially, if it represents a change in the patient’s previous habits of only wearing clean clothes. In this case study, we present a 72-year-old woman with moderate Alzheimer’s disease who lives with her daughter, who adamantly refuses to change the clothes she has been wearing for a few days and which are now clearly dirty. We report the interaction, highlight what went wrong in the patient–daughter interaction, and discuss how the catastrophic ending could have been avoided or averted.