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Caregiver Distress

Selene Valero-Moreno, Marián Pérez-Marín, Inmaculada Montoya-Castilla, Silvia Castillo-Corullón, Alvar Ramírez-Aguilar, Amparo Escribano-Montaner
INTRODUCTION: Adolescents with asthma face problems inherent to this stage in their development, to which the challenges of taking over control of their disease, complying with a daily treatment and regular medical followup are added. Any rejection generated by this may lead to treatment non-adherence and poor asthma control, which brings about problems in family dynamics, made worse by the stress or the emotional distress that this situation causes in caregivers. OBJECTIVE: Identify adjustment profiles and predictors of risk for the well-being of caregivers of pediatric patients with bronchial asthma...
April 1, 2018: Archivos Argentinos de Pediatría
Emily E Adams, Morgan L Wrightson
The present study aims to synthesize current evidence on the impact of LVAD implantation on quality of life. Current evidence was systematically reviewed to obtain relevant quantitative and qualitative articles published after 2007. Sandelowski's recommended steps for meta-summary were used to analyze the 19 studies that met the inclusion criteria. LVADs can improve HF symptoms and some aspects of QoL. Emotional and physical adaptation involves many changes and learning to manage the device takes time. Functional limitations still exist and patients still lack independence...
March 15, 2018: Heart & Lung: the Journal of Critical Care
Emily L Zale, Tessa J Heinhuis, Tara Tehan, Danielle Salgueiro, Jonathan Rosand, Ana-Maria Vranceanu
OBJECTIVE: Every year, millions of Americans become informal caregivers to loved ones admitted to Neuroscience Intensive Care Units (Neuro-ICU), and face challenges to Quality of Life (QoL). This study sought to identify associations between resiliency, distress, and caregiver QoL at time of Neuro-ICU admission. METHODS: Informal caregivers (N = 79, Mage  = 53, 64% female) of Neuro-ICU patients were recruited and completed self-report questionnaires during the hospitalization...
March 6, 2018: General Hospital Psychiatry
Amanda Roze des Ordons, Tasnim Sinuff, Henry T Stelfox, Jane Kondejewski, Shane Sinclair
CONTEXT: Spiritual distress contributes to patient and family experiences of care. OBJECTIVES: To map the literature on how seriously ill patients and their family members experience spiritual distress within inpatient settings. METHODS: Our scoping review included 4 databases using search terms 'existential' or 'spiritual' combined with 'angst', 'anxiety', 'distress', 'stress' or 'anguish'. We included original research describing experiences of spiritual distress among adult patients or family members within inpatient settings and instrument validation studies...
March 13, 2018: Journal of Pain and Symptom Management
Melissa H Bellin, Angelica Newsome, Cassie Lewis-Land, Joan Kub, Shawna S Mudd, Rachel Margolis, Arlene M Butz
INTRODUCTION: Low-income caregiver perspectives on asthma management are understudied but may illuminate strategies to improve care delivery and child outcomes. METHOD: Purposive sampling methods were used to recruit 15 caregivers of children with frequent asthma emergency department visits. Interviews explored how poverty and stress affect asthma management. Grounded theory coding techniques were used to analyze the data. RESULTS: Participants were the biological mother (100%) and were poor (75% had mean annual income ≤ $30,000)...
March 12, 2018: Journal of Pediatric Health Care
Kristi Soileau, Nanette Elster
The hospice philosophy embraces palliative care for the terminally ill, for whom quality of life is the central focus of comfort care management. Often, caregivers hesitate or simply do not elect to extend oral care for patients nearing the end of life, due to difficulties encountered in patient compliance, a sense of futility in doing so, staff time constraints in prioritizing care, underfunding, or a lack of education as to how and why such care should be delivered to the hospice patient. This article aims to show physiological and psychosocial reasons why the hospice patient has a need for properly and regularly implemented oral care and why dental professionals have an ethical responsibility to address the current void that exists in hospice-centered oral care...
January 1, 2018: Journal of Palliative Care
John Noel M Viaña, Frederic Gilbert
Memory dysfunction and cognitive impairments due to Alzheimer's disease can affect the selfhood and identity of afflicted individuals, causing distress to both people with Alzheimer's disease and their caregivers. Recently, a number of case studies and clinical trials have been conducted to determine the potential of deep brain stimulation as a therapeutic modality for people with Alzheimer's disease. Some of these studies have shown that deep brain stimulation could induce flashbacks and stabilize or even improve memory...
January 1, 2018: Dementia
Margaret R Bauer, Emma E Bright, James J MacDonald, Elizabeth H Cleary, O Joe Hines, Annette L Stanton
Little is known about quality of life (QOL) of patients with pancreatic cancer and their caregivers compared with adults with other cancers. This systematic review summarizes the available evidence base, identifies its limitations, and recommends directions for research and clinical application. A systematic review was conducted of research on QOL in adults with pancreatic cancer and their caregivers. Quality of life was examined in the following specific domains: psychological, physical, social, sexual, spiritual, and general...
April 2018: Pancreas
Francesca Palandri, Giulia Benevolo, Alessandra Iurlo, Elisabetta Abruzzese, Angelo M Carella, Chiara Paoli, Giuseppe A Palumbo, Massimiliano Bonifacio, Daniela Cilloni, Alessandro Andriani, Attilio Guarini, Diamante Turri, Elena Maria Elli, Antonietta Falcone, Barbara Anaclerico, Pellegrino Musto, Nicola Di Renzo, Mario Tiribelli, Renato Zambello, Caterina Spinosa, Alessandra Ricco, Letizia Raucci, Bruno Martino, Mario Annunziata, Silvia Pascale, Anna Marina Liberati, Giorgio La Nasa, Margherita Maffioli, Massimo Breccia, Novella Pugliese, Silvia Betti, Gianfranco Giglio, Antonietta Cappuccio, Luigi Reale
PURPOSE: Myelofibrosis (MF) is a chronic myeloproliferative neoplasm characterised by an aggressive clinical course, with disabling symptoms and reduced survival. Patients experience a severely impaired quality of life and their families face the upheaval of daily routines and high disease-related financial costs. The aim of this study was to investigate the perceptions of Italian patients and their caregivers about living with MF and the burden of illness associated with MF. METHODS: A quali-quantitative questionnaire and a prompted written narrative survey were administered to patients affected by primary or post-essential thrombocythemia/post-polycythaemia vera MF and their primary caregiver in 35 Italian haematological centres...
March 8, 2018: Quality of Life Research
Katherine Bain, Carla Durbach
Much research details the psychological risks to individuals exposed as children to intimate partner violence (IPV). However, resilience has been a neglected area of study within this population. This article details adaptive responses in six participants exposed to IPV in childhood. Adult attachment interviews (AAI) and follow-up semi-structured interviews analyzed using an interpretive thematic analysis revealed common themes relating to psychological defenses and adaptive strategies. Despite exposure to IPV in childhood, these six women were found to have secure attachment states of mind...
March 1, 2018: Journal of Interpersonal Violence
Janine V Olthuis, Patrick J McGrath, Charles E Cunningham, Michael H Boyle, Patricia Lingley-Pottie, Graham J Reid, Alexa Bagnell, Ellen L Lipman, Karen Turner, Penny Corkum, Sherry H Stewart, Patrick Berrigan, Kathy Sdao-Jarvie
Disruptive behavior disorders are prevalent in youth, yet most children with disruptive behavior do not have access to timely, effective treatment. Distance-delivered service (e.g., via telephone, Internet) can overcome several barriers to care. This study tested the effectiveness of a 12-week parent training program, Strongest Families™ Parenting the Active Child, delivered via written material, skill-based videos, and telephone coaching sessions, as compared to usual care in reducing child externalizing behavior...
March 8, 2018: Journal of Abnormal Child Psychology
Alessandro Tessitore, Pietro Marano, Nicola Modugno, Francesco E Pontieri, Nicola Tambasco, Margherita Canesi, Anna Latorre, Leonardo Lopiano, Mariachiara Sensi, Rocco Quatrale, Paolo Solla, Giovanni Defazio, Gabriella Melzi, Anna Maria Costanzo, Giuliana Gualberti, Umberto di Luzio Paparatti, Angelo Antonini
INTRODUCTION: Caring for a person with Parkinson's disease (PD) is associated with an increased risk of psychiatric morbidity and persistent distress. The objective of this study was to describe the burden and the related factors of caregivers of advanced PD (APD) patients either treated with continuous dopaminergic delivery systems or standard therapy. METHODS: This cross-sectional, epidemiologic study conducted in 13 Italian sites enrolled PD patients treated with continuous dopaminergic delivering systems [either levodopa/carbidopa intestinal gel (LCIG) infusion or continuous subcutaneous apomorphine infusion (CSAI)] or continuation of standard of care (SOC) with a caregiver...
March 7, 2018: Journal of Neurology
Mark Hofmeister, Ally Memedovich, Laura E Dowsett, Laura Sevick, Tamara McCarron, Eldon Spackman, Tania Stafinski, Devidas Menon, Tom Noseworthy, Fiona Clement
BACKGROUND: The aim of palliative care is to improve the quality of life of patients and families through the prevention and relief of suffering. Frequently, patients may choose to receive palliative care in the home. The objective of this paper is to summarize the quality and primary outcomes measured within the palliative care in the home literature. This will synthesize the current state of the literature and inform future work. METHODS: A scoping review was completed using PRISMA guidelines...
March 7, 2018: BMC Palliative Care
Marilyn Kendall, Eileen Cowey, Gillian Mead, Mark Barber, Christine McAlpine, David J Stott, Kirsty Boyd, Scott A Murray
BACKGROUND: Case fatality after total anterior circulation stroke is high. Our objective was to describe the experiences and needs of patients and caregivers, and to explore whether, and how, palliative care should be integrated into stroke care. METHODS: From 3 stroke services in Scotland, we recruited a purposive sample of people with total anterior circulation stroke, and conducted serial, qualitative interviews with them and their informal and professional caregivers at 6 weeks, 6 months and 1 year...
March 5, 2018: CMAJ: Canadian Medical Association Journal, Journal de L'Association Medicale Canadienne
Patrick Maggi, Johanna de Almeida Mello, Sam Delye, Sophie Cès, Jean Macq, Christiane Gosset, Anja Declercq
BACKGROUND: Approximately one third of older people over 65 years fall each year. Home modifications may decrease occurrence of falls. PURPOSE: This study aims to determine the risk factors of falls for frail older persons and to evaluate the impact of home modifications by an occupational therapist on the occurrence of falls. METHOD: We conducted a longitudinal study using a quasiexperimental design to examine occurrence of falls. All participants 65 years of age and older and were assessed at baseline and 6 months after the intervention...
February 2018: Canadian Journal of Occupational Therapy. Revue Canadienne D'ergothérapie
Stephanie Petty, Kevin Harvey, Amanda Griffiths, Donna Maria Coleston, Tom Dening
OBJECTIVE: More understanding is needed about the emotional experiences of dementia from the perspective of the individual. This understanding can then inform the provision of health care to meet individual needs. This systematic review aimed to present all available descriptions of emotional distress and explanations for emotional distress experienced by individuals with dementia, articulated personally and by others. METHODS: A systematic mixed-method review identified literature that was screened and quality appraised...
March 2, 2018: International Journal of Geriatric Psychiatry
Sabrina Cipolletta, Giorgia Rosamaria Gammino, Patrizia Francescon, Arianna Palmieri
Family caregivers of people with amyotrophic lateral sclerosis (ALS) live stressful lives in which they spend most of their time caring for their loved ones and managing difficult situations, thereby reducing the time spent in taking care of themselves. This situation may last several years. Previous literature has widely highlighted that this situation reduces caregivers' quality of life and increases their psychological distress and risk of health problems, but there is a lack of studies that focus on psychological interventions for these situations...
February 26, 2018: Health & Social Care in the Community
Neide P Areia, Gabriela Fonseca, Sofia Major, Ana P Relvas
OBJECTIVE: The issues surrounding a patient's terminal phase of cancer and the imminent death of the individual represent a major family crisis affecting all its members. The goal of this study was to assess the prevalence of psychological morbidity in family caregivers of persons with terminal cancer in terms of psychological distress, depression, anxiety, somatization, and complicated anticipatory grief, and to determine which factors may influence these responses. METHOD: One hundred and twelve family caregivers of individuals with terminal cancer completed an assessment protocol comprising the Brief Symptom Inventory (depression, anxiety, somatization, and a computed score for global distress), the Marwit-Meuser Caregiver Grief Inventory - Short Form (anticipatory grief), the Family Inventory of Needs (importance and satisfaction of needs), and the Systemic Clinical Outcome Routine Evaluation -15 (family functioning)...
February 26, 2018: Palliative & Supportive Care
Shin Hye Yoo, Young Ho Yun, Kyoung-Nam Kim, Jung Lim Lee, Jeanno Park, Youn Seon Choi, Yeun Keun Lim, Samyong Kim, Hyun Sik Jeong, Jung Hun Kang, Ho-Suk Oh, Ji Chan Park, Si-Young Kim, Hong Suk Song, Keun Seok Lee, Dae Seog Heo, Young Seon Hong
PURPOSE: The objective of this study was to investigate the impact of caregivers' role preference in decision making on conflicts and psychiatric distresses. METHODS: The responses of 406 caregivers of terminal cancer patients enrolled in a trial determining the efficacy of a decision aid focused on the disclosure of terminal disease status were included in this secondary analysis. The outcomes include the change scores of the Decision Conflict Scale (DCS) and depression and anxiety subscales of the Hospital Anxiety and Depression Scale (HADS) at the 1 and 3 months from baseline...
February 24, 2018: Quality of Life Research
Billy A Caceres, Adriana Perez
The Caregiver Advise, Record, Enable (CARE) Act has the potential to make a positive impact in the lives of Latino older adults and their caregivers. As Latino individuals are the fastest growing older adult population, the number of Latino families and caregivers is also expected to grow, particularly among those providing care for someone with Alzheimer's disease or other dementias. Caregiving has been considered a culturally embedded value among Latino individuals. Although few studies have focused on caregiving in this population, those that exist suggest that Latino caregivers struggle to find bilingual and bicultural support and information and show higher levels of distress and health disparities...
March 1, 2018: Journal of Gerontological Nursing
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