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Informal caregiving

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https://www.readbyqxmd.com/read/28430396/patient-and-caregiver-perspectives-on-decision-support-for-symptom-and-quality-of-life-management-during-cancer-treatment-implications-for-ehealth
#1
Mary E Cooley, Manan M Nayak, Janet L Abrahm, Ilana M Braun, Michael S Rabin, Jane Brzozowski, Christopher Lathan, Donna L Berry
OBJECTIVES: Adequate symptom and quality-of-life (SQL) management is a priority during cancer treatment. eHealth is a timely way to enhance patient-engagement, facilitate communication and improve health outcomes. The objectives of this study were to describe patient and caregivers' perspectives for providing, processing and managing SQL data to enhance communication and identify desired components for decision support. METHODS: Data were collected from 64 participants through questionnaires and focus groups...
April 21, 2017: Psycho-oncology
https://www.readbyqxmd.com/read/28430021/family-perspectives-on-telemedicine-for-pediatric-subspecialty-care
#2
Kristin N Ray, Laura Ellen Ashcraft, Ateev Mehrotra, Elizabeth Miller, Jeremy M Kahn
BACKGROUND: Children often have difficulty accessing subspecialty care, and telemedicine may improve access to subspecialty care, but information is lacking on how best to implement telemedicine programs to maximize acceptance and, ultimately, maximize impact for patients and their families. METHODS AND MATERIALS: To understand how subspecialty telemedicine is perceived and to identify design elements with the potential to improve telemedicine uptake and impact, we conducted and analyzed semi-structured interviews with 21 informants, including parents and caregivers of children with subspecialty care needs and adolescent and young adult patients with subspecialty care needs...
April 21, 2017: Telemedicine Journal and E-health: the Official Journal of the American Telemedicine Association
https://www.readbyqxmd.com/read/28428878/immunization-dropout-rate-and-data-quality-among-children-12-23-months-of-age-in-ghana
#3
Benjamin Baguune, Joyce Aputere Ndago, Martin Nyaaba Adokiya
BACKGROUND: Immunization against diseases is one of the most important public health interventions with cost effective means to preventing childhood morbidity, mortality and disability. However, a proportion of children particularly in Africa are not fully immunized with the recommended vaccines. Thus, many children are still susceptible to the Expanded Program on Immunization (EPI) targeted diseases. The objective of this study was to determine the immunization dropout rate and data quality among children aged 12-23 months in Techiman Municipality, Ghana...
2017: Archives of Public Health, Archives Belges de Santé Publique
https://www.readbyqxmd.com/read/28428815/service-user-and-care-giver-involvement-in-mental-health-system-strengthening-in-nepal-a-qualitative-study-on-barriers-and-facilitating-factors
#4
Dristy Gurung, Nawaraj Upadhyaya, Jananee Magar, Nir Prakash Giri, Charlotte Hanlon, Mark J D Jordans
BACKGROUND: Service user and caregiver involvement has become an increasingly common strategy to enhance mental health outcomes, and has been incorporated in the mental healthpolicies of many developed nations. However, this practice is non-existent or fragmented in low and middle income countries (LMICs). Instances of service user and caregiver involvement have been rising slowly in a few LMICs, but are rarely described in the literature. Very little is known about the context of user and caregiver participation in mental health system strengthening processes in a low-income, disaster- and conflict-affected state such as Nepal...
2017: International Journal of Mental Health Systems
https://www.readbyqxmd.com/read/28428158/mobile-application-to-promote-adherence-to-oral-chemotherapy-and-symptom-management-a-protocol-for-design-and-development
#5
Joel Nathan Fishbein, Lauren Ellen Nisotel, James John MacDonald, Nicole Amoyal Pensak, Jamie Michele Jacobs, Clare Flanagan, Kamal Jethwani, Joseph Andrew Greer
BACKGROUND: Oral chemotherapy is increasingly used in place of traditional intravenous chemotherapy to treat patients with cancer. While oral chemotherapy includes benefits such as ease of administration, convenience, and minimization of invasive infusions, patients receive less oversight, support, and symptom monitoring from clinicians. Additionally, adherence is a well-documented challenge for patients with cancer prescribed oral chemotherapy regimens. With the ever-growing presence of smartphones and potential for efficacious behavioral intervention technology, we created a mobile health intervention for medication and symptom management...
April 20, 2017: JMIR Research Protocols
https://www.readbyqxmd.com/read/28427372/protocol-for-evaluation-of-the-continuum-of-primary-care-in-the-case-of-a-miscarriage-in-the-emergency-room-a-mixed-method-study
#6
Francine de Montigny, Chantal Verdon, Diane Dubeau, Annie Devault, Martin St-André, Éric Tchouaket Nguemeleu, Carl Lacharité
BACKGROUND: In Quebec (Canada), nearly 20,000 pregnancies end in miscarriage, and the majority of the miscarriages are dealt with in an emergency unit. Although there are studies documenting the effects of this type of grief on mental health, men's experiences are much less discussed than those of women. Similarly, no study has evaluated best practices in terms of service continuity, from emergency care to community resources. The aim of this study is to better understand the relationships that exist between the organization of emergency room and primary care health services for women presenting with miscarriage, on the one hand, and the positions and experiences of women and men within these services, on the other...
April 20, 2017: BMC Pregnancy and Childbirth
https://www.readbyqxmd.com/read/28426678/nutrition-education-improves-dietary-diversity-of-children-6-23-months-at-community-level-results-from-a-cluster-randomized-controlled-trial-in-malawi
#7
Judith Kuchenbecker, Anika Reinbott, Beatrice Mtimuni, Michael B Krawinkel, Irmgard Jordan
BACKGROUND: Low dietary quality and quantity and inappropriate feeding practices can cause undernutrition. Poor nutritional status in early childhood is associated with growth faltering. The objective of the study was to assess the potential of community-based nutrition education to improve height-for-age z-scores in children 6-23 months of age. METHODS AND FINDINGS: We carried out a cluster-randomized-controlled trial to assess the effectiveness of nutrition education...
2017: PloS One
https://www.readbyqxmd.com/read/28426438/perceptions-and-attitudes-of-romanian-people-toward-autopsy-procedures-according-to-the-level-of-knowledge
#8
Daniela Marinescu, Gellért Attila Gyurka, Roxana Miclăuş, Codruţa Nemet, Liliana Rogozea
In the last decade, Romanian hospitals have been facing a decline in autopsy rates. This has had a negative impact on medical education and the training of young doctors. Quite a number of caregivers strongly oppose the carrying out of autopsies on their deceased loved ones who have died in hospital. Hence, this study was designed to evaluate how autopsies are perceived by an average person and whether improved knowledge about autopsies would help reduce people's reluctance toward them. The study involved 216 willing participants who had either never had a loved one die in hospital or had never had the power to make a decision about their dead loved ones' body...
April 20, 2017: American Journal of Forensic Medicine and Pathology
https://www.readbyqxmd.com/read/28426235/expressive-social-support-buffers-the-impact-of-care-related-work-interruptions-on-caregivers-depressive-symptoms
#9
Shannon Ang, Rahul Malhotra
OBJECTIVE: To assess if expressive and instrumental social support from family and friends moderate the association of care-related work interruptions (e.g. leaving work for the older adult's doctor appointment) with depressive symptoms among working family caregivers of older adults. METHODS: Data were from the Singapore Survey on Informal Caregiving (SSIC). A subsample of 662 dyads, each comprising an older care-recipient [home-dwelling Singaporean aged 75 and older receiving human assistance for at least one activity of daily living (ADL)] and his/her working family caregiver, was analysed...
April 20, 2017: Aging & Mental Health
https://www.readbyqxmd.com/read/28425120/unravelling-swedish-informal-caregivers-generalised-resistance-deficits
#10
Mia M T Wennerberg, Monica Eriksson, Solveig M Lundgren, Ella Danielson
In salutogenic theory, individual/contextual, immaterial/material characteristics enabling movements towards health are labelled Specific and Generalised Resistance Resources, SRRs/GRRs, and characteristics counteracting such movements Specific and Generalised Resistance Deficits, SRDs/GRDs. The aim of this paper was to present SRDs and GRDs described by caregivers as stemming from themselves and their care recipient. Guided by salutogenic theory, an explorative design was used to collect data through interviews with 32 Swedish informal caregivers...
April 20, 2017: Scandinavian Journal of Caring Sciences
https://www.readbyqxmd.com/read/28424226/objective-measurement-of-adherence-to-out-patient-airway-clearance-therapy-by-high-frequency-chest-wall-compression-in-cystic-fibrosis
#11
Christina L Mikesell, Robert R Kempainen, Theresa A Laguna, Jeremiah S Menk, Andrew R Wey, Philippe R Gaillard, Warren E Regelmann
BACKGROUND: Objective measures of adherence to high-frequency chest wall compression (HFCWC, also known as high frequency chest wall oscillation, HFCWO), a form of airway clearance therapy for patients with cystic fibrosis, are lacking. We used a novel electronic monitoring device integrated into an HFCWC vest to measure adherence compared with self-reported adherence. We determined factors that influenced adherence and how adherence correlated with baseline pulmonary function and pulmonary exacerbations...
April 19, 2017: Respiratory Care
https://www.readbyqxmd.com/read/28424076/caregiver-s-quality-of-life-and-its-positive-impact-on-symptomatology-and-quality-of-life-of-patients-with-schizophrenia
#12
Alejandra Caqueo-Urízar, Marine Alessandrini, Alfonso Urzúa, Xavier Zendjidjian, Laurent Boyer, David R Williams
BACKGROUND: Although the quality of life (QoL) experienced by patients with schizophrenia has been recognized, few studies have assessed the relationship between the caregivers' QoL and patients' QoL. METHODS: The study included 253 stabilized outpatients with schizophrenia and their caregivers from 3 Mental Health Services in Bolivia (N = 83), Chile (N = 85) and Peru (N = 85). Caregivers' and patients' QoL were respectively assessed using two specific QoL questionnaires (S-CGQoL and S-QoL 18)...
April 19, 2017: Health and Quality of Life Outcomes
https://www.readbyqxmd.com/read/28423918/expanding-the-palliative-care-domains-to-meet-the-needs-of-a-community-based-supportive-care-model
#13
Eric W Anderson, Monica S Frazer, Sandra E Schellinger
BACKGROUND: Whole person care is appropriate for seriously ill persons. The current framework of palliative care domains in the National Consensus Project (NCP) Guidelines for Quality Palliative Care offers an opportunity to reassess the domains of care delivered at home, earlier in the course of illness. OBJECTIVE: This qualitative study was used to test the applicability of a proposed, expanded set of domains. The results were used to inform a home-based, upstream model of supportive care for serious illness...
January 1, 2017: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/28423817/persona-development-and-educational-needs-to-support-informal-caregivers
#14
Zeina Al Awar, Craig Kuziemsky
Informal caregivers are playing an increasing role in community based care delivery. Research is needed that looks at the educational needs of informal caregivers as a precursor to HIT design to support community care delivery. A challenge is informal caregivers have very diverse educational needs. Personas are an approach to describe user characteristics as part of systems design and this approach could be used to understand and categorize the various educational needs of informal caregivers. This paper addresses this research need and provides a method for persona development and the identification of educational needs for informal caregivers...
2017: Studies in Health Technology and Informatics
https://www.readbyqxmd.com/read/28423767/querying-ehrs-with-a-semantic-and-entity-oriented-query-language
#15
Romain Lelong, Lina Soualmia, Badisse Dahamna, Nicolas Griffon, Stéfan J Darmoni
While the digitization of medical documents has greatly expanded during the past decade, health information retrieval has become a great challenge to address many issues in medical research. Information retrieval in electronic health records (EHR) should also reduce the difficult tasks of manual information retrieval from records in paper format or computer. The aim of this article was to present the features of a semantic search engine implemented in EHRs. A flexible, scalable and entity-oriented query language tool is proposed...
2017: Studies in Health Technology and Informatics
https://www.readbyqxmd.com/read/28422561/development-and-feasibility-of-a-structured-goals-of-care-communication-guide
#16
David B Bekelman, Rachel Johnson-Koenke, Sangeeta C Ahluwalia, Anne M Walling, Jamie Peterson, Rebecca L Sudore
BACKGROUND: Discussing goals of care and advance care planning is beneficial, yet how to best integrate goals of care communication into clinical care remains unclear. OBJECTIVE: To develop and determine the feasibility of a structured goals of care communication guide for nurses and social workers. DESIGN/SETTING/SUBJECTS: Developmental study with providers in an academic and Veterans Affairs (VA) health system (n = 42) and subsequent pilot testing with patients with chronic obstructive pulmonary disease or heart failure (n = 15) and informal caregivers (n = 4) in a VA health system...
April 19, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28421012/moderated-online-social-therapy-a-model-for-reducing-stress-in-carers-of-young-people-diagnosed-with-mental-health-disorders
#17
John Gleeson, Reeva Lederman, Peter Koval, Greg Wadley, Sarah Bendall, Sue Cotton, Helen Herrman, Kingsley Crisp, Mario Alvarez-Jimenez
Family members caring for a young person diagnosed with the onset of mental health problems face heightened stress, depression, and social isolation. Despite evidence for the effectiveness of family based interventions, sustaining access to specialist family interventions is a major challenge. The availability of the Internet provides possibilities to expand and sustain access to evidence-based psychoeducation and personal support for family members. In this paper we describe the therapeutic model and the components of our purpose-built moderated online social therapy (MOST) program for families...
2017: Frontiers in Psychology
https://www.readbyqxmd.com/read/28420287/associations-between-early-caregiving-and-rural-low-ses-african-american-children-s-representations-of-attachment-relationships
#18
Geoffrey L Brown, Hanna C Gustafsson, W Roger Mills-Koonce, Martha J Cox
Little research has examined the legacy of early maternal care for later attachment representations among low-income and ethnic minority school-aged children. Using data from a sample of 276 rural, low-income, African-American families, this study examined associations between maternal care in infancy and children's representations of attachment figures in middle childhood. Maternal care was coded from 10-min home-based observations at 6, 15, and 24 months of age. Representations of attachment figures were assessed using the Manchester Child Attachment Story Task at 6 years of age...
April 18, 2017: Attachment & Human Development
https://www.readbyqxmd.com/read/28420191/designing-effective-interactions-for-concordance-around-end-of-life-care-decisions-lessons-from-hospice-admission-nurses
#19
Carey Candrian, Channing Tate, Kirsten Broadfoot, Alexandra Tsantes, Daniel Matlock, Jean Kutner
Near the end of life, hospice care reduces symptom-related distress and hospitalizations while improving caregiving outcomes. However, it takes time for a person to gain a sufficient understanding of hospice and decide to enroll. This decision is influenced by knowledge of hospice and its services, emotion and fear, cultural and religious beliefs, and an individual's acceptance of diagnosis. Hospice admission interactions, a key influence in shaping decisions regarding hospice care, happen particularly late in the illness trajectory and are often complex, unpredictable, and highly variable...
April 18, 2017: Behavioral Sciences
https://www.readbyqxmd.com/read/28417550/burden-emotional-distress-and-quality-of-life-among-informal-caregivers-of-lung-cancer-patients-an-exploratory-study
#20
J-Y Tan, A Molassiotis, M Lloyd-Williams, J Yorke
This study was conducted to explore the interrelationships among caregiver burden, emotional status and quality of life (QoL) in caregivers of lung cancer patients, and to identify whether caregiver burden and health status are associated with patient emotional status and QoL. Forty-three dyads of lung cancer patients and their caregivers were included for analysis. Caregiver-reported outcomes were measured by Caregiver Burden Scale (CBS), Caregivers Quality of Life Index-Cancer (CQOLC) and Hospital Anxiety and Depression Scale (HADS), while patient-reported outcomes were collected by HADS and Lung Cancer Symptom Scale (LCSS)...
April 18, 2017: European Journal of Cancer Care
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