Concerns about safe driving practices in individuals with dementia often fall to caregivers, who are frequently faced with the difficult task of initiating the conversation about driving and driving cessation with their loved ones, a topic that can be a very emotional and sensitive for older adults. Several print-based resources are currently available to caregivers, however, emerging research suggests that disseminating information through a medium that depicts the complexities involved in decision-making about driving, such as applied theatre, may be more effective than these traditional print-based methods. Currently, there are no resource guides available for caregivers that incorporate applied theatre into their dissemination methods. In light of this research, this dissertation followed the principles of Knowledge Translation to work closely with caregivers to develop (Study 1) and evaluate (Study 2) a toolkit centered around an applied-theatre production called No Particular Place to Go. In Study 1, the comments and suggestions obtained from focus groups and individual interviews with 17 (eight informal and nine formal) dementia caregivers were incorporated into a toolkit called Down the Road, which consists of the play, No Particular Place to Go (in DVD-format), an accompanying viewer guidebook, and supplemental information cards. In Study 2, using a pre-post design, a total of 70 general caregivers (31 informal and 39 formal), including dementia caregivers, evaluated Down the Road by completing the Driving-Related Self-Efficacy Questionnaire (DRSEQ) and a User Satisfaction survey. Both informal and formal caregivers’ self-efficacy around various topics related to older driver safety increased after reviewing Down the Road. Additionally, caregivers favourably received the toolkit. This work moved beyond information gathering by incorporating the expressed needs of caregivers to translate knowledge into an effective, research-based toolkit that can provide caregivers with an interactive resource for use individually or in facilitated groups. / Graduate / 0621

Autism Spectrum Disorders (ASDs), also referred to as Pervasive Developmental Disorders (PDDs), are characterized by deficits in verbal and nonverbal communication, social interaction, and repetitive or restricted interests and behaviors. To date, much of the literature on ASDs has been conducted from a western perspective, although interest in ASDs from a global perspective has dramatically increased in recent years. Over the last decade, there have been numerous conceptual papers attempting to explain how autism might be experienced in other parts of the world. However, in actuality, little research has been conducted in this area, and further exploration of the experiences of individuals diagnosed with ASDs and the families raising them across the globe is needed. The nature of qualitative methodology makes it best-suited for capturing the nuances and complexity of the psychological phenomenon underlying the experiences being studied. These experiences help to capture and reflect the ways in which culture impacts these experiences. The purpose of this study was to examine the lived experiences of mothers raising children diagnosed with an ASD in Jamaica using a qualitative, exploratory methodological approach. Jamaica is in its infancy in terms of creating a standardized diagnostic process for ASDs and is early in development of government programs designed to provide services to newly diagnosed children on the spectrum. Many children diagnosed with ASDs living in Jamaica have very limited access to educational settings, and an abundance of barriers to treatment exist. As such, there is much to be gained from studying mothers' experiences with their child's early development and their initial concerns for their child's development, their experiences with the diagnostic process, the perceived impact of raising a child on the spectrum for themselves and their family, their daily living experiences, their experiences accessing supports and services, their vision for the future, as well as any advice they would give to mothers of children who were recently diagnosed. To this end, the experiences of 13 mothers raising a child diagnosed with an ASD and living in Jamaica were captured through open-ended interviews in this study. The results of this study found a number of notable themes to emerge from interviews with mothers raising a child on the spectrum and living in Jamaica. In particular, a number of mothers reported a typical pregnancy, with a slightly higher Cesarean-section rate than would be expected, and fairly typical early development noted in the child. Mothers reported first noticing a number of different developmental concerns, most especially language delays, lack of eye contact, and unusual social interactions, although a number of mothers were not the first to notice these issues. All but one mother reported first seeking out the counsel of their child's pediatrician, many to have their concerns dismissed, with all but one mother going on for evaluation at a clinic specializing in ASD assessment where their child was later diagnosed. Most mothers reported a number of stressors, in particular difficulties finding respite care, appropriate educational settings for their child, as well as coping with the tremendous financial burden they had in raising their child. They reported their lives to be busy, especially because they were dealing with their child's challenging behaviors on a daily basis. The mothers' vision of the future for their child varied greatly including hope for independence, for them to learn a skill, for better communication, or that they be able to live a "normal" life. The mothers all varied greatly as far as the advice mothers would give to mothers of children recently diagnosed on the spectrum, with some saying to have hope or keep their faith and others noting the importance of being the advocate and "structuring" the child early. This study not only provides a better understanding of the experiences of mothers raising a child on the spectrum in Jamaica but also provides empirical support for their advocacy efforts and the need for increased supports and services for these families. It also serves to inform a number of ecological, systemic factors impacting families raising a child on the spectrum in Jamaica and a framework for other studies who seek to also understand the various types of experiences that families of children on the spectrum have.

Bakgrund: Demenssjukdom är den fjärde största folksjukdomen i Sverige och antalet insjuknanden beräknas öka. Begreppet demens inbegriper progredierande sjukdomar som framförallt påverkar minne, humör och kommunikationsförmåga. Många personer med demenssjukdom vårdas i hemmet av en eller flera anhöriga. Att vara anhörigvårdare innebär ett stort ansvar och påverkar alla medlemmar i familjen. Syfte: Att beskriva anhörigas upplevelser av att vårda en närstående med demenssjukdom. Metod: En litteraturöversikt som bygger på en analys av tio vetenskapliga artiklar med kvalitativ design.  Resultat: I resultatet påvisades negativa och positiva upplevelser. Vissa anhöriga upplevde sig ha blivit starkare i sig själva genom vårdandet av sin närstående men ett flertal uttryckte även känslor som ilska och frustration. Det framkom att anhöriga var i behov av stöd i vårdandet, men att de ofta tyckte att det var jobbigt att be om stöd då de inte ville vara en börda till andra eller till samhället.  Med sjukdomens uppkomst upplevde många en förändrad identitet hos den närstående som påverkade relationen mellan dem. Vissa upplevde rollförändringar i familjen och en saknad av social samt emotionell närhet, medan andra vittnade om att de kommit varandra närmare. Diskussion: Resultatet visar att det finns en stor komplexitet i anhörigvårdares attityder gentemot hjälp och stöd utifrån, detta bör uppmärksammas av sjuksköterskor. Kunskap om anhörigas resurser och styrkor samt deras upplevda börda är en viktig del i sjuksköterskans omvårdnadsarbete. Sjuksköterskan behöver även vara medveten om att det förekommer känslor som ilska och frustration och identifiera dessa hos anhöriga för att undvika att den demenssjuke kommer till skada. Resultatet tyder även på att kvinnor och mäns upplevelser kan skilja sig åt och således kan deras behov se väldigt olika ut. Sjuksköterskan kan därför dra nytta av att beakta ett genusperspektiv i mötet med anhöriga. Resultatet har att diskuterats utifrån Dorothea Orems teori om egenvårdsbalans. / Background: Dementia is the fourth most common endemic disease in Sweden and the number of people diagnosed with dementia is estimated to increase. Dementia includes diseases that affect the brain with symptoms on memory function, mood and communication skills. Several people with dementia is cared for at home by family members. Being an informal caregiver is a large responsibility and affects the whole family. Aim: To describe relative’s experiences of caring for a family member with dementia. Method: A literature review based on the analysis of ten scientific articles with qualitative design. Results: The results showed both positive and negative experiences. Some relatives expressed the feeling of becoming stronger and more resilient as a result of caring for their loved one but there where feelings of anger and frustration as well. The results showed that the relatives where in need of social and formal support but often had a hard time asking for help due to the feeling of being a burden for others and the society. Many experienced that their family member’s identity changed with the disease, which caused a change in the relationship as well. Some expressed role changes within the family and the lack of social and emotional closeness, while others expressed a feeling of becoming closer to each other. Discussions: It became clear that there was a complexity in relative’s attitude to social and formal support and nurses in contact with informal caregivers should be aware of this. Knowledge about informal caregiver’s perceived burden and what they perceive as their strength is an important key part for nurses in their work with dementia patients and their relatives. Nurses need to be aware of the occurrence of feelings of anger and frustration in relatives to be able to spot these and make sure the patient welfare is not compromised. Due to differences in men and women’s experiences it could be useful for the nurse to have a gender aspect in their meeting and caring for informal caregivers. The results were discussed from the perspective of Dorothea Orems self-care theory.

To address some remaining questions in the extant family caregiving literature, the present study examined a specific care-recipient (CR) problematic behavior that could be the most critical to family caregiver (CG) emotional and physical well-being--CR-resistance or uncooperative behaviors vis-à-vis the CG. In order to provide detailed descriptions of CR-resistance and to determine the impact of CR-resistance on CG emotional and physical well-being, the present study applied a sequential quantitative-qualitative mixed method design approach with 8-day diary survey data on 63 family CGs and follow-up semi-structured interview data from 19 of those CGs.The quantitative data documented and revealed significant within- and between-person variance in CR-resistance. Hierarchical Linear Modeling (HLM) analyses results further revealed that neither the mean level nor the daily fluctuation of CR-resistance across 8 survey days by themselves appeared to have a significant impact on CG emotional or physical health. However, the combination of having relatively high mean level and daily fluctuation of CR-resistance brought had a significant impact on CG physical health; when CGs with relatively high mean level CR-resistance faced more than their usual amount of CR-resistance on a given day, they reported increases in physical health symptoms.The qualitative inductive thematic analyses revealed that based on the context in which CR-resistance occurred and the occurrence patterns, CR-resistance experiences could be divided into four types, and these four types of CR-resistance seem to pose different types and/or magnitude of impact on CG emotional well-being.Furthermore, informed by Social Cognitive Theory and Stress Theory, the present study also examined CG personal, interpersonal, and social resources as possible moderators of the link between CR-resistance and CG emotional/physical well-being. HLM analyses results revealed that CG sense of efficacy, community/professional service utilization, and family disagreement regarding care played significant moderating roles. The qualitative thematic analyses clearly suggested that specific CG cognitive resources--particularly those that were transferred and/or generalized from the CG's past professional or personal experiences--have a strong influence on CG resilience in the face of CR-resistance. The moderating results were interpreted light of theoretical frameworks and extant literature. Implications and future directions are discussed.

No description available.

Family members are in an optimal position to identify changes in behaviour of loved ones suffering from delirium. To date there are no known studies on educational interventions specifically targeting families of the elderly related to delirium outside of the hospital setting. Using the Knowledge to Action Process, families became involved in the development of a knowledge translation product related to delirium. It was found from two focus groups that participants’ knowledge of delirium was limited. Also, it was determined that participants were most interested in receiving an educational session in a group setting. The education session was developed using feedback from the focus groups as well as evidence based resources. The focus for the education session was on prevention and identification of delirium. There were a total of seven education sessions held and 16 eligible participants. In each session a pre and post-test for delirium knowledge was given to the participants. There was a significant increase in scores on the post-test following the session. Participants were also given a post session questionnaire to evaluate the education session. Overall the session was well received; participants were often interested in learning more about delirium. Half of the participants felt they would be able to identify delirium in someone close to them. The majority of participants thought that it is important for other families of the elderly to receive a similar session on delirium. Four to six weeks following the education session, semi-structured telephone interviews were conducted with five participants from the second phase in order to receive further feedback on the intervention. Most participants were able to recall information related to risk factors and signs of delirium. Three participants stated that the education sessions should be longer in order to provide more time for discussion. Participants still thought they would be able to recognize delirium as long as they were close to the person experiencing it. Since the education session none of the participants had witnessed anyone who was delirious. / Thesis (Master, Nursing) -- Queen's University, 2010-09-03 12:50:12.792

No description available.

This qualitative multi case research asks how the needs of caregivers of primary malignant brain tumour (PMBT) patients are met through structured neuro-oncology programs in Canadian centres. Utilizing telephone interviews with eleven social workers and one psychologist the study analyses their perspectives on the scope and nature of services to brain tumour patients and their caregivers. PMBT is a rare and palliative disease often with neurocognitive and neurobehavioral effects posing special challenges for caregivers. Health care system reliance on family caregivers has resulted in significant implications for their emotional and physical risk. Findings show exclusive patient focused health care in ambulatory programs with fragmented care resulting in marginalization and invisibility of caregivers. This approach is inconsistent with current literature promoting collaborative family centered care, recommended for continuity of care throughout the illness trajectory. Recommendations focus on systemic caregiver service improvements.

It is estimated that by 2050 the proportion of older adults in the U.S. will reach 20% (U.S. Census Bureau, 2008). This increase in the elderly population will likely be associated with a greater need for supportive services in various sectors, including healthcare and housing, such as assisted living communities. Many older adults choose to reside in assisted living communities due to increased difficulty managing health conditions or performing activities of daily living (e.g., bathing, toileting, walking). A primary goal of assisted living communities is to help residents maintain their health and well-being. However, little is known about how caregiving staff detect and interpret relevant cues, and what behaviors are taken to address concerns about residents. In addition to investigating these questions, the role of experience in the job was examined by comparing workers with a relatively low level of experience (1 month-16 months) to those with a relatively high level of experience (3+ years). These questions were addressed using a Critical Incident Interview and a Scenario-based Interview. The cues discussed by participants were categorized as Cognitive, Physical, or Emotional in nature. Participants reacted with concern to most of the scenarios, although the ratings they assigned to indicate their level of concern showed a high level of variability across participants. The explanations participants generated for the various scenarios were classified as either general or specific, with the majority of explanations coded as specific. Specific explanations were primarily that the situation was the result of a Cognitive/Emotional/Social issue or a Physical health issue. Of the actions participants described taking to handle the scenarios, gathering and using information was discussed far more than any other action. Participants discussed needing information related to the resident, such as their health, current and recent state, and personal history, as well as elaboration of the cues that initiated the concern in the first place, such as how long the symptom had been present. Participants also discussed various types of knowledge that they used in their decision making process. The most frequently discussed type of knowledge was health conditions and symptoms. Lastly, the data from the current study did not generally reveal differences between the two levels of experience that were examined. A revised model of caregiver decision making and practical contributions are discussed.

In this dissertation 9 social workers working in Pretoria, Gauteng Province were interviewed. The focus of these interviews was regarding the use of direct observation as a measuring instrument for the purpose of assessing attachment of the caregiver-and-child's relationship. This information jointly with a two-fold literature study served as the foundation for a proposed preliminary practise framework. The completed research is described in the article format in two articles. Article 1 contains the literature study on attachment theory and its application to direct observation of attachment of the caregiver and child's relationship. Article 2 contains the literature study on direct observation measuring instruments for the purpose of assessing attachment of the caregiver-and-child's relationship. Direct observation measuring instruments used by experienced social workers were also examined by means of an empirical investigation. The practise framework acts as preliminary guidelines giving direction into the usage of direct observation as a structured measuring instrument in assessing the caregiver-and-child's attachment relationship. / Thesis (M.A. (MW))--North-West University, Potchefstroom Campus, 2009.