Where are the family caregivers? Finding family caregiver-related content in foundational nursing documents

2020 ◽  
Vol 36 (1) ◽  
pp. 76-84
Author(s):  
Kristin G. Cloyes ◽  
Sara E. Hart ◽  
Ann Kuglin Jones ◽  
Lee Ellington
2020 ◽  
pp. bmjspcare-2020-002608
Author(s):  
Joaquín T Limonero ◽  
Jorge Maté-Méndez ◽  
María José Gómez-Romero ◽  
Dolors Mateo-Ortega ◽  
Jesús González-Barboteo ◽  
...  

BackgroundFamily caregivers of patients with advanced illness at end of life often report high levels of emotional distress. To address this emotional distress is necessary to have adequate and reliable screening tools.AimThis study analyses the psychometric properties and clinical utility of the Family Caregiver Emotional Detection Scale for caregivers of patients with end-stage cancer (DME-C, Spanish acronym) who are receiving palliative care (PC).DesignMulticentre, cross-sectional study.Settings/participantsFamily caregivers of patients with advanced cancer at end of life receiving palliative treatment were interviewed to explore their emotional distress through the DME-C scale and other instruments measuring anxiety and depression (Hospital Anxiety and Depression Scale (HADS)), distress thermometer (DT) and overload (B), as well as a clinical psychological assessment (CPA).Results138 family caregivers, 85 (61.6%) female and 53 (38.4%) male, with an average age of 59.69±13.3 participated in the study. The reliability of the scale, as measured by Cronbach’s alpha, was 0.76, and its stability over time was 0.734. Positive, significant correlations were found between the DME-C and the scores for anxiety and depression registered on the HADS scale, as well as with the total result of this latter scale and the results for B, the DT and the CPA. A statistical analysis of the receiver-operating characteristic curves showed that the scale has a sensitivity and specificity of 75%, and that the cut-off point for the detection of emotional distress was a score ≥11. Fifty-four per cent of the caregivers displayed emotional distress according to this scale.ConclusionsThe DME-C displays good psychometric properties. It is simple, short, reliable and easy to administer. We believe that the instrument is useful for the detection of emotional distress in the family caregivers of hospitalised patients suffering from end-stage illnesses and receiving PC.


Author(s):  
Robert Holda

One of the most misunderstood and unappreciated segments of society in relation to medical tourism is the family caregiver; those caring for a loved one who sacrifice their own employment schedule, their personal time for relaxing and recreation, and often and importantly their own health. The purpose of this chapter is to raise awareness of the plight of family caregivers as an issue for medical tourism, the effects of stress and burnout, and the essential need for respite of body, mind, and spirit for these central assistants in the matter of healthcare for patients. Though healthcare and its subset, medical tourism, are frequently perceived as focused on a “patient”, they also encompass many other individuals and organizations. As addressed here, the focus is on the family member caring for a loved one. The intent is to link the concept of medical tourism as an avenue for relaxation and respite to enhance the wellness of this specific target market.


2003 ◽  
Vol 1 (4) ◽  
pp. 353-365 ◽  
Author(s):  
PETER HUDSON

According to the World Health Organization, the patient and family should be viewed as the “unit of care” when palliative care is required. Therefore family caregivers should receive optimal supportive care from health professionals. However, the impact of supporting a dying relative is frequently described as having negative physical and psychosocial sequalae. Furthermore, family caregivers consistently report unmet needs and there has been a dearth of rigorous supportive interventions published. In addition, comprehensive conceptual frameworks to navigate the family caregiver experience and guide intervention development are lacking. This article draws on Lazarus and Folkman's seminal work on the transactional stress and coping framework to present a conceptual model specific to family caregivers of patients receiving palliative care. A comprehensive account of key variables to aid understanding of the family caregiver experience and intervention design is provided.


2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S979-S979
Author(s):  
Patricia Egan

Abstract Dementia family caregivers are routinely enlisted as proxy assessors of care recipients’ quality of life (QOL). This study explored whether prompts to change perspective during QOL assessment could elicit an intra-proxy gap. The intra-proxy gap was hypothesized to be any difference between those assessments made from the caregiver’s own perspective and those made from the adopted perspective of the care recipient, as the care giver imagined it to be (Pickard and Knight, 2005). Thirty-six dementia family caregivers were recruited from senior service agencies. Subjects completed the Quality of Life-Alzheimer Disease (QOL-AD), Caregiver Version under two conditions: First, from an unprompted perspective and second, from the adopted perspective of the care recipient, as the family caregiver imagined it to be. T-testing indicated intra-proxy gaps emerged for eleven of the QOL-AD’s thirteen domains. For these domains, QOL scores were higher when assessed from the care recipient’s perspective, as the family caregiver imagined it to be. The sample was then repeatedly bisected using caregivers’ personal, relational, and health factors. T-testing indicated that family caregivers’ personal factors were associated with intra-proxy gaps across more QOL-AD domains than their relational or health factors were. Three personal factors, being of older age, having more empathetic concern, and having more empathetic distress, were associated with intra-proxy gaps more frequently than other personal factors were. Findings suggest that clinicians should be alert for perspective employed by proxy assessors and for the possibility of intra-proxy gaps. Recognition of these gaps could help improve interpretation of QOL scores.


2020 ◽  
Vol 29 ◽  
Author(s):  
Larissa de Carli Coppetti ◽  
Nara Marilene Oliveira Girardon-Perlini ◽  
Rafaela Andolhe ◽  
Angélica Dalmolin ◽  
Steffani Nikoli Dapper ◽  
...  

ABSTRACT Objective: to analyze the relationship between the characteristics of patients in cancer treatment, their family caregivers, the care provided with the overload, as well as between overload and the care skills. Method: a cross-sectional study conducted at the chemotherapy and radiotherapy services of a university hospital in Rio Grande do Sul (Brazil) from March to August 2017, with 132 family caregivers of patients in cancer treatment. Data was collected by an instrument that characterizes patients, caregivers and care (the Brazilian version of the Caring Ability Inventory) and the Zarit Overload Scale. The following coefficients were used: Spearman correlation, Mann-Whitney or Kruskal-Wallis. Results: there was a significant relationship between the total overload and the patient’s level of dependence (p=0.021) and help from others (p=0.009). The “care impact” factor was significantly related with the patient’s level of dependence (p=0.006), the caregiver’s gender (p=0.035) and the care help (p=0.043). Regarding the “perception of self-efficacy” factor, there was a significant relationship involving the caregiver’s age (p=0.036) and, in the “caregiver expectation” factor, a significant relationship was observed with the care help (p=0.002). There was a significant and negative correlation between the total care skill and the overload factor related to interpersonal relationship (p=0.035); and between the “courage” dimension and the “perception of self-efficacy” (p=0.032) and “interpersonal relationship” (p=0.008) factors. Conclusion: the characteristics of the patient, the caregiver and the care provided influence the overload of the family caregiver, and this overload, in turn, interferes with the care skills. These results should be considered when planning interventions that aim to guide and prepare family caregivers for home care.


2020 ◽  
pp. 107484072097718
Author(s):  
Dena Schulman-Green ◽  
Shelli L. Feder ◽  
J. Nicholas Dionne-Odom ◽  
Janene Batten ◽  
Victoria Jane En Long ◽  
...  

Family caregivers play an integral role in supporting patient self-management, yet how they perform this role is unclear. We conducted a qualitative metasynthesis of family caregivers’ processes to support patient self-management of chronic, life-limiting illness and factors affecting their support. Methods included a systematic literature search, quality appraisal of articles, data abstraction, and data synthesis to produce novel themes. Thirty articles met inclusion criteria, representing 935 international family caregivers aged 18 to 89 years caring for patients with various health conditions. Three themes characterized family caregivers’ processes to support patient self-management: “Focusing on the Patient’s Illness Needs,” “Activating Resources to Support Oneself as the Family Caregiver,” and “Supporting a Patient Living with a Chronic, Life-Limiting Illness.” Factors affecting family caregivers’ support included Personal Characteristics, Health Status, Resources, Environmental Characteristics, and the Health Care System. The family caregiver role in supporting patient self-management is multidimensional, encompassing three processes of care and influenced by multiple factors.


Author(s):  
Kelli I. Stajduhar ◽  
J. Nicholas Dionne-Odom

This chapter investigates best practices for nurses who are involved in supporting families and family caregivers in palliative care. It views the family as a specialized unit of care which contributes to the healthcare system in a substantive way. There are significant implications for families and family caregivers in taking on these responsibilities, and nurses play a vital part in maintaining the integrity and health of the family and family caregiver. With a focus on palliative care, specific suggestions are made for nurses’ assessments in identifying needs and providing subsequent interventions. Particular sites of care (home, acute, etc.) and implications arising from a range of disease categories are discussed. The chapter concludes with recommendations for identifying community resources.


2010 ◽  
Vol 15 (6) ◽  
pp. 2973-2981 ◽  
Author(s):  
Silvia Cristina Mangini Bocchi ◽  
Karen Cristina Urtado Cano ◽  
Lilian Baltieri ◽  
Daniele Cristina Godoy ◽  
Wilza Carla Spiri ◽  
...  

This study aimed at understanding the interactional experience between family caregivers and disabled elderly persons supported in a Day Care Center according to the caregiver's perspective. It also aimed at developing a representative theoretical model for the events experienced by such caregiver. The Grounded Theory was used as methodological framework whereas Interactional Symbolism served as the theoretical framework. Observation and interviews were used for data collection. The following phenomenon arose from the results: feeling of support by the Day Care Center, by the strength of the bond with the elderly and by spirituality in order to continue playing the challenging role of a family caregiver for a disabled elderly person. The study made possible to understand that, among these three supporting cornerstones for coping with the burden generated by the family caregiver role, the care model promoted by the Day Care Center was the intervenient variable in the process of improving the quality of life of the family caregiver-disabled elderly person binomial. This allowed the identification of the main category - moving from reclusion to partial freedom: the experience of family caregivers for disabled elderly persons assisted in a Day Care Center.


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 154-154
Author(s):  
Ayumi Igarashi ◽  
Madoka Katayama ◽  
Mariko Sakka ◽  
Maiko Noguchi-Watanabe ◽  
Chie Fukui ◽  
...  

Abstract Having a sense of security for living at home is essential to continue living at home and it is important to develop a community care system that enables high sense of security. Because frail to dependent older adults often accompany various conditions that require medical attention, receiving homecare nursing might allow the family caregiver to feel safe in living at home. Therefore we examined whether receiving homecare nursing service contributes to a higher family caregiver sense of security. We conducted a questionnaire survey regarding older adults who were 75 years and older with at least some sort of community care services, and their family caregivers (n=776). Family sense of security was measured using 5 items (e.g., “I feel secure about my relative living at home with help of available services”), rated on 5-point Likert scales. Characteristics of older adults were obtained from their nurses or care managers. The mean age of the older adults was 85.8 years, 58% female, and 8 % living alone. The mean total family sense of security was 20.6 (standard deviation = 3.7) out of 25. In multiple regression analysis, the family sense of security was positively associated with the use of homecare nursing (β= 0.09, p=0.020), adjusting for participants’ age, stability of their medical conditions, level of activities of daily living, use of medical procedures, living arrangements, and house call physician services. Homecare provided by nurses could contribute to longer staying at home among older adults by way of the higher family sense of security.


2020 ◽  
Vol 9 (2) ◽  
pp. 56
Author(s):  
A Fahmil Haq Aplizuddin ◽  
Harmayetty Harmayetty ◽  
Elida Ulfiana

Introduction: Hemodialysis is a life-long treatment for end-stage renal disease (ESRD). ESRD has physical and psychosocial challenges to experience stress which not only affects but patients but also family members who care for them or also called family caregivers. Analyzing the relationship of social support and resilience to the level of stress in the family caregiver of hemodialysis patients at Haji Hospital Surabaya.Methods: A cross-sectional study with a population of family caregiver members of hemodialysis patients at RSU Haji Surabaya. The sample size was 92 respondents with criteria, namely families who treat hemodialysis patients at RSU Haji Surabaya, live in one house with patients, aged > 18 years, and can read and write. The variables of this study are social support, resilience, and stress levels. Data collection was performed using a questionnaire and analyzed using Spearman’s Rho test. Results : There was a significant negative relationship between social support and stress levels (p = 0.004 and r = -0.296) and resiliency with stress levels (p = 0.003 and r = -0.311).Discussion: The level of stress in a family caregiver hemodialysis patient can be influenced by the social support received and the level of resilience they have. The social support has an important role for family caregivers obtained from the family and significant other.


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