Development of premature children: caregivers' understanding according to the Bioecological Theory

Abstract OBJECTIVE Understanding the conceptions of premature children caregivers on child development and associated factors. METHOD An exploratory-descriptive qualitative study of 12 families with children under three years of age. Interviews were submitted to thematic content analysis, systematized into the categories of Bioecological Theory of Human Development: Process, Person, Context and Time, and in the Functional Development category. RESULTS There are concerns about impairment in the current and future development of a Person/child defined as fragile as a result of premature birth (Time dimension), minimized by the scope of observable competencies such as motor skills. The Context, especially family and health services, and Proximal Processes, described as one-way caregiver interactions, are considered determinants of development. Functional Development is considered a natural consequence and result of education. The support network is crucial, supporting or limiting care. CONCLUSION Concerns about the development mobilize caregivers to stimulate the premature child/person and requests family and healthcare assistance.

Social representation of Alzheimer's disease for family caregivers: stressful and rewarding

Abstract OBJECTIVE To understand the content of Social Representation (SR) of family caregivers of Alzheimer's disease patients. METHOD Interviews were conducted with 26 caregivers and analyzed by the ALCESTE software. RESULTS The SR content was structured in two thematic axes called Daily Life and Care and Medical and Emotional Concepts and Outcomes. The first axis creates images related to the routine of interaction with the sick person, and contains a description of care procedures, experiences, and practices applied every day. The second is composed of subjective and conceptual aspects that make up the social representation of Alzheimer's disease, with meanings related to the emotional, medical, and biological contexts. CONCLUSION Due to the importance of topics related to patients' dependence and the personal and emotional consequences of the disease, overload is the main content of the SR of Alzheimer's disease for caregivers, and the understanding of these SR by health professionals should support the planning of interventions addressing this group of individuals.

Do Spanish informal caregivers come to the rescue of dependent people with formal care unmet needs?

This paper analyses the effect of unmet formal care needs on informal caregiving hours in Spain using the two wavesof the Informal Support Survey (1994, 2004). Testing for double sample selection from formal care receipt and theemergence of unmet needs provides evidence that the omission of either variable would causes underestimation of thenumber of informal caregiving hours. After controlling for these two factors the number of hours of care increaseswith both the degree of dependency and unmet needs. More importantly, in the presence of unmet needs, the numberof informal caregiving hours increases when some formal care is received. This result refutes the substitution modeland supports complementarity or task specificity between both types of care. For a given combination of formal careand unmet needs, informal caregiving hours increased between 1994 and 2004. Finally, in the model for 2004, theselection term associated with the unmet needs equation is larger than that of the formal care equation, suggestingthat using the number of formal care recipients as a quality indicator may be confounding, if we do not complete thisinformation with other quality indicators.

Attitudes towards hastened death in ALS: A prospective study of patients and family caregivers.

Abstract Amyotrophic lateral sclerosis (ALS) may be associated with the wish to hasten death (WTHD). We aimed to determine the prevalence and stability of WTHD and end-of-life attitudes in ALS patients, identify predictive factors, and explore communication about WTHD. We conducted a prospective questionnaire study among patients and their primary caregivers attending ALS clinics in Germany and Switzerland. We enrolled 66 patients and 62 caregivers. Half of the patients could imagine asking for assisted suicide or euthanasia; 14% expressed a current WTHD at the baseline survey. While 75% were in favour of non-invasive ventilation, only 55% and 27% were in favour of percutaneous endoscopic gastrostomy and invasive ventilation, respectively. These attitudes were stable over 13 months. The WTHD was predicted by depression, anxiety, loneliness, perceiving to be a burden to others, and a low quality of life (all p < 0.05). Lower religiosity predicted whether patients could imagine assisted suicide or euthanasia. Two-thirds of patients had communicated their WTHD to relatives; no-one talked to the physician about it, yet half of them would like to do so. In conclusion, physicians should consider proactively asking for WTHD, and be sensitive towards neglected psychosocial problems and psychiatric comorbidity.

Experience of meaning in life in bereaved informal caregivers of palliative care patients.

PURPOSE: Providing care for terminally ill family members places an enormous burden on informal caregivers. Meaning in life (MiL) may be a protective factor, but is jeopardised in caregiving and bereavement. This study evaluates the following questions: To what extent do bereaved informal caregivers of palliative care (PC) patients experience meaning in their lives? What differences emerge in carers compared to the general German population? How does MiL relate to well-being in former caregivers? METHODS: Eighty-four bereaved PC caregivers completed the Schedule for Meaning in Life Evaluation, the Brief Symptom Inventory, the WHOQOL-BREF, a single-item numerical rating scale of quality of life, and the Satisfaction with Life Scale. The experience of MiL of bereaved caregivers was compared to a representative population sample (n=977). RESULTS: The overall MiL fulfillment of bereaved caregivers (69 % female, age 55.5 ± 12.9 years) was significantly lower than in the general population (68.5 ± 19.2 vs. 83.3 ± 14, p<.001), as was the overall importance ascribed to their meaning framework (76.6 ± 13.6 vs. 85.6 ± 12.3, p<&#8201;.001). PC caregivers are far more likely to list friends, leisure, nature/animals, and altruism. Higher MiL was correlated with better life satisfaction and quality of life. CONCLUSION: Coping with the loss of a loved one is associated with changes in MiL framework and considerably impairs a carer's experience of MiL fulfillment. Individual MiL is associated with well-being in PC caregivers during early bereavement. Specific interventions for carers targeted at meaning reconstruction during palliative care and bereavement are needed to help individuals regain a sense of meaning and purpose.

Implementation of guidelines on delirium in a General Hospital: a before-after study of their impact on caregivers' knowledge and clinical skills

INTRODUCTION: Delirium is a highly prevalent disorder, with serious consequences for the hospitalised patient. Nevertheless, it remains under-diagnosed and under-treated. We developed evidence-based clinical practice guidelines (CPGs) focusing on prevention, screening, diagnosis, and treatment of delirium in a general hospital. This article presents the implementation process of these CPGs and a before-after study assessing their impact on healthcare professionals' knowledge and on clinical practice. METHODS: CPGs on delirium were first implemented in two wards (Neurology and Neurosurgery) of the Lausanne university hospital. Interactive one-hour educational sessions for small groups of nurses and physicians were organised. Participants received a summary of the guidelines and completed a multiple choice questionnaire, assessing putative changes in knowledge, before and three months after the educational session. Other indicators such as "diagnosis of delirium" reported in the discharge letters, and mean duration of patients' hospital stay before and after implementation were compared. RESULTS: Eighty percent of the nurses and physicians from the Neurology and Neurosurgery wards attended the educational sessions. Both nurses and physicians significantly improved their knowledge after the implementation (+9 percentage-points). Other indicators were not modified by the intervention. CONCLUSION: A single interactive intervention improved both nurses' and physicians' knowledge on delirium. Sustained and repeated interventions are probably needed to demonstrate changes in clinical practice.

Correlational study: illness representations and coping styles in caregivers for individuals with schizophrenia.

BACKGROUND: Caring for individuals with schizophrenia can create distress for caregivers which can, in turn, have a harmful impact on patient progress. There could be a better understanding of the connections between caregivers' representations of schizophrenia and coping styles. This study aims at exploring those connections. METHODS: This correlational descriptive study was conducted with 92 caregivers of individuals suffering from schizophrenia. The participants completed three questionnaires translated and validated in French: (a) a socio-demographic questionnaire, (b) the Illness Perception Questionnaire for Schizophrenia and (c) the Family Coping Questionnaire. RESULTS: Our results show that illness representations are slightly correlated with coping styles. More specifically, emotional representations are correlated to an emotion-focused coping style centred on coercion, avoidance and resignation. CONCLUSION: Our results are coherent with the Commonsense Model of Self-Regulation of Health and Illness and should enable to develop new interventions for caregivers.

Effectiveness of a specialized outpatient palliative care service as experienced by patients and caregivers.

Abstract Objectives: In Germany since 2007 patients with advanced life-limiting diseases are eligible for Specialized Outpatient Palliative Care (SOPC). To provide this service, SOPC teams have been established as a new facility in the health care system. The objective of this study was to evaluate the effectiveness of one of the first SOPC teams based at the Munich University Hospital. Methods: All patients treated by the SOPC team and their primary caregivers were eligible for this prospective nonrandomized study. The main topics of the surveys before and after involvement of the SOPC team were: for patients, the assessment of symptom burden (Minimal Documentation System for Palliative Medicine, MIDOS), satisfaction with quality of palliative care (Palliative Outcome Scale, POS), and quality of life (McGill Quality of Life Questionnaire, MQOL); for caregivers, burden of care (Häusliche Pflegeskala, home care scale, HPS), anxiety and depression (Hospital Anxiety and Depression Scale, HADS), and quality of life (Quality of Life in Life-Threatening Illness-Family Carer Version, QOLLTI-F). Results: Of 100 patients treated between April and November 2011, 60 were included in the study (median age 67.5 years, 55% male, 87% oncological diseases). In 23 of 60 patients, only caregivers could be interviewed. The median interval between the first and second interview was 2.5 weeks. Quality of life increased significantly in patients (p&lt;0.05) and caregivers (p&lt;0.001), as did the patients' perception of quality of palliative care (POS, p&lt;0.001), while the caregivers' psychological distress and burden of care significantly decreased (HADS, p&lt;0.001; HPS, p&lt;0.001). Conclusions: The involvement of an SOPC team leads to a significant improvement in the quality of life of patients and caregivers and can lower the burden of home care for the caregivers of severely ill patients.

Kinship foster care: a study from the perspective of the of the caregivers, the children and the child welfare workers

In the last twenty years, in most Western countries, kinship foster care has become an integral part of childcare systems,growing progressively with regard to the numbers of children involved and relative weight as a care resource within thesystem; indeed, in some countries it is even more common than other placement options, such as non-kinship foster careand residential care. Research on this phenomenon is still recent and scarce, and there are few programmes targeting thispopulation. In this article we present the results of a descriptive study on kinship foster care in the city of Barcelona,including information and data from the different stakeholders involved. From a quality of life research perspective weanalyze the perceptions, evaluation and expressed satisfaction of caregivers, children and practitioners from the specialistChild and Adolescent Teams (EAIAs) responsible for the study and follow-up of kinship foster care cases. The researchpresented results are in line with those of current research in this field, and lays the basis for the future development ofkinship foster care programmes

Acogimiento en familia extensa: un estudio desde la perspectiva de los acogedores, de los niños y niñas acogidos y de los profesionales que intervienen. = Kinship foster care: a study from the perspective of the caregivers, the children and the child welfare workers

Desde hace aproximadamente dos décadas, en la mayoría de los países occidentales, los acogimientos en familia extensa han entrado a formar parte de los sistemas de protección infantil, siguiendo una evolución creciente en cuanto a número y peso especifico como recurso de acogimiento. Las investigaciones sobre este fenómeno son aún recientes y escasas como también lo son los programas dirigidos a esta población. En el presente artículo presentamos los resultados de un estudio descriptivo sobre los acogimientos en familia extensa en la ciudad de Barcelona, donde se recogen datos de los principales agentes implicados en este fenómeno. Desde la perspectiva de los estudios de la calidad de vida se analizan las percepciones, evaluaciones, y satisfacción expresada, por parte de los acogedores, los niños/as acogidos y los profesionales de los Equipos de Atención a la Infancia y Adolescencia (EAIA) que se encargan del estudio y seguimiento de estos acogimientos. La investigación presenta unos resultados acordes con los estudios que actualmente se realizan en este ámbito y sienta las bases para el despliegue futuro de programas dirigidos a los acogimientos en familia extensa

Exploring the experiences of male spousal caregivers for their wives with alzheimer disease in their homes : the lived experience and the men's perception of support groups /

This research is qualitative in nature and has explored, by means of interviews, the '^^ experiences of 10 men in their roles in caring for their spouses with Alzheimer Disease (see glossary) in their homes. Additional data were collected by attending 3 formal support group meetings and one informal meeting of a group of men who brought their wives to a support group meeting for their wives with AD. The data retrieved supported the assumption that education about the disease, utilization of formal community support services, and attendance at caregiver support groups or programs can assist healthy male caregivers in caring for their wives with AD in their homes.

The Relationship between Dementia Family Caregivers' Traditional Values and Beliefs about Caregiving and Well-being

Introduction: Canada’s aging population is diverse and this diversity will continue to grow for the next two decades (Government of Canada, 2002; Katz, 2005; Statistics Canada, 2010). Objective: to examine the relationship between dementia family caregivers’ traditionally-based beliefs about caregiving, their caregiving experience, and their well-being. Method: exploratory secondary data analysis of cross-sectional survey data from 76 community caregivers of persons with dementia in Ontario. Results: traditional values for caregiving was independently associated with coping resources and health status but not depression symptoms. Caregiver self-efficacy and social support both partially mediated the relationship between beliefs about caregiving and caregiver health status. Discussion: Findings from this exploratory study are consistent with stress process models of culture and caregiving. The finding that self-efficacy was associated with traditional values and that it mediated the relationship between traditional values and caregiver well-being is new to the literature.

Navigating Evidence-Based Practice: A Presentation for Parents and Caregivers

Prevalence rates for children with Autism Spectrum Disorder (ASD) have increased dramatically, to the current estimation of 1 in 68 (Centers for Disease Control and Prevention [CDC], 2014). The overall intention of this project is to develop a workshop for families, and caregivers, which will enhance awareness, the importance of evidence-based practice for individuals with ASD and provide local resources that are available. This project involves a literature review of ASDs, evidence-based practice (EBP) and how it affects both families and caregivers. The literature review attempted to answer the question, what are the most popular evidence-based practices and what are the benefits in parents understanding EBP for children with ASD that are currently being utilized today. The purpose of this project is to assist families and caregivers in making well-informed decisions involving the choice of treatments that will have the most positive impact on their children with ASD.

Development and evaluation of a nursing psycho-educational program focused on communication for family caregivers in early Alzheimer's disease

Thèse numérisée par la Division de la gestion de documents et des archives de l'Université de Montréal