Caring for the Family Caregiver

2020 ◽  
pp. 200-214
Author(s):  
Elaine Wittenberg ◽  
Joy V. Goldsmith ◽  
Sandra L. Ragan ◽  
Terri Ann Parnell
Keyword(s):  
Health Literacy ◽  
Family Caregiver ◽  
Contextual Factors ◽  
Healthcare Providers ◽  
Self Care ◽  
Future Research ◽  
Disease Information ◽  
The Family ◽  
Caregiver Needs ◽  
Literacy Framework

There is little evidence for caregiver assessment and interventions based on unique social and contextual factors of caregiving. Current approaches to caring for the family caregiver involve a “one size fits all” approach where caregiver assessment may or may not occur, and there is no link between identification of caregiver needs and recommended resources. When caregiver assessment does occur, it does not involve unique caregiving characteristics that positively impact communication and health literacy. Caring for the Family Caregiver, a communication and health literacy framework, is introduced and consists of teaching healthcare providers to address caregiving types by finding disease information, assessing and integrating information, partnering with the caregiver, finding support, talking with the caregiver, and planning for caregiver self-care. Directions for future research are also summarized.

The Family Caregiver Communication Typology

2020 ◽  
pp. 77-102
Author(s):  
Elaine Wittenberg ◽  
Joy V. Goldsmith ◽  
Sandra L. Ragan ◽  
Terri Ann Parnell
Keyword(s):  
Chronic Illness ◽  
Health Literacy ◽  
Family Caregiver ◽  
Family System ◽  
Healthcare Providers ◽  
Family Expectations ◽  
The Family ◽  
Tailored Communication ◽  
Tailored Approach ◽  
Communication Needs

Chronic illness in the family can force patterns to change or a create a struggle to maintain existing patterns. When healthcare providers seek to learn what exists before illness for the patient and family caregiver, they are endowed with the knowledge to provide tailored communication to better meet their health literacy needs. This chapter details how the family system influences a caregiver’s communication and caregiving experience, demonstrating the need for an integrated and tailored approach to care for the family caregiver. Family expectations, decisions, roles, and uncertainty figure prominently in setting the stage for the caregiver communication burden incurred in the process of caregiving. The authors present the program and process of research that resulted in the creation of the family caregiver communication typology and detail four family caregiver communication types, which aid in understanding a caregiver’s communication needs and preferences.

scholarly journals Electronic, mobile and telehealth tools for vulnerable patients with chronic disease: a systematic review and realist synthesis

BMJ Open ◽  
2018 ◽  
Vol 8 (8) ◽  
pp. e019192 ◽  
Author(s):  
Sharon Parker ◽  
Amy Prince ◽  
Louise Thomas ◽  
Hyun Song ◽  
Diana Milosevic ◽  
...  
Keyword(s):  
Chronic Disease ◽  
Health Literacy ◽  
Healthcare Providers ◽  
Chronic Health Condition ◽  
Vulnerable Groups ◽  
Self Management ◽  
Future Research ◽  
Ehealth Literacy ◽  
Health Technologies ◽  
Vulnerable Patients

ObjectivesThe objective of this review was to assess the benefit of using electronic, mobile and telehealth tools for vulnerable patients with chronic disease and explore the mechanisms by which these impact patient self-efficacy and self-management.DesignWe searched MEDLINE, all evidence-based medicine, CINAHL, Embase and PsychINFO covering the period 2009 to 2018 for electronic, mobile or telehealth interventions. Quality was assessed according to rigour and relevance. Those studies providing a richer description (‘thick’) were synthesised using a realist matrix.Setting and participantsStudies of any design conducted in community-based primary care involving adults with one or more diagnosed chronic health condition and vulnerability due to demographic, geographic, economic and/or cultural characteristics.ResultsEighteen trials were identified targeting a range of chronic conditions and vulnerabilities. The data provided limited insight into the mechanisms underpinning these interventions, most of which sought to persuade vulnerable patients into believing they could self-manage their conditions through improved symptom monitoring, education and support and goal setting. Patients were relatively passive in the interaction, and the level of patient response attributed to their intrinsic level of motivation. Health literacy, which may be confounded with motivation, was only measured in one study, and eHealth literacy was not assessed.ConclusionsResearch incorporating these tools with vulnerable groups is not comprehensive. Apart from intrinsic motivation, health literacy may also influence the reaction of vulnerable groups to technology. Social persuasion was the main way interventions sought to achieve better self-management. Efforts to engage patients by healthcare providers were lower than expected. Use of social networks or other eHealth mechanisms to link patients and provide opportunities for vicarious experience could be further explored in relation to vulnerable groups. Future research could also assess health and eHealth literacy and differentiate the specific needs for vulnerable groups when implementing health technologies.

Correlates of the positive psychological byproducts of cancer: Role of family caregivers and informational support

2017 ◽  
Vol 15 (6) ◽  
pp. 693-703 ◽  
Author(s):  
Kristin Litzelman ◽  
Danielle Blanch-Hartigan ◽  
Chun Cheih Lin ◽  
Xuesong Han
Keyword(s):  
Cancer Survivors ◽  
Family Caregiver ◽  
Healthcare Providers ◽  
Well Being ◽  
Cross Sectional Study ◽  
Future Research ◽  
Informational Support ◽  
Cross Sectional ◽  
Life Threatening Illness ◽  
Independent Association

ABSTRACTObjective:Experiencing a life-threatening illness such as cancer can elicit both negative (e.g., distress) and positive (e.g., growth) psychological responses. The present study sought to determine the correlates of four positive psychological byproducts in cancer survivors: becoming a stronger person, coping better with life's challenges, making positive changes in life, and adopting healthier habits.Method:Data for this cross-sectional study were taken from the Medical Expenditures Panel Survey (MEPS) Experiences with Cancer Survivorship Supplement (Yabroff et al., 2012). Cancer survivors (N = 785) reported their sociodemographic and cancer-related characteristics. Descriptive statistics were utilized to summarize cancer survivor characteristics, including demographic factors, cancer factors, and stressors and resources related to cancer. Multivariable logistic regressions were employed to assess the independent association of the stressors and resources with each psychological response, controlling for covariates. All analyses were weighted to account for the complex sampling design of the MEPS.Results:In multivariable analyses, those with a family caregiver were 50% more likely to report better coping with challenges, and around 70% were more likely to report making positive changes in life or adopting healthier habits because of their cancer. Receiving informational support from healthcare providers was also consistently associated with positive byproducts (odds ratios ranging from 1.6 to 2.0). Few of the stressors were associated with positive byproducts: having insurance problems due to cancer was positively associated with becoming a stronger person, and work limitations were associated with making positive changes in life; those who reported high perceived chances of recurrence were less likely to report becoming a stronger person.Significance of Results:Having a family caregiver and receiving detailed informational support from healthcare providers were associated with reporting positive experiences with cancer. The hypotheses and future research stimulated by these findings may improve our understanding of the process by which positive byproducts develop and may ultimately help improve psychological well-being among cancer survivors.

scholarly journals EDUCAÇÃO EM SAÚDE AO FAMILIAR CUIDADOR DE ADOECIDOS EM CUIDADOS PALIATIVOS ONCOLÓGICOS DOMICILIARES

2019 ◽  
Vol 10 (2) ◽  
Author(s):  
Jamil Michel Miranda Do Vale ◽  
Antônio Corrêa Marques Neto ◽  
Lucialba Maria Silva Dos Santos ◽  
Mary Elizabeth De Santana
Keyword(s):  
Health Education ◽  
Cancer Patients ◽  
Family Caregiver ◽  
Care Service ◽  
Care Home ◽  
Self Care ◽  
Descriptive Research ◽  
Basic Care ◽  
Patient Teaching ◽  
The Family

Objetivo: analisar de que forma é desenvolvida pelo enfermeiro a educação em saúde ao familiar cuidador de adoecidos em cuidados paliativos oncológicos domiciliares. Método: pesquisa descritiva com abordagem qualitativa realizada com 10 familiares cuidadores de adoecidos pelo câncer cadastrados no Serviço de Assistência Domiciliar do Hospital Ophir Loyola. Resultados: emergiram duas categorias denominadas: Experiência da educação em saúde para o familiar cuidador e Educação em saúde no domicílio: atuação do enfermeiro no ensino do cuidado ao adoecido e autocuidado para o familiar cuidador. Conclusão: o presente estudo constatou uma fragilidade na assistência de enfermagem acerca da realização da educação em saúde voltada para o autocuidado do referido cuidador. Identificamos que o mesmo tem procurado executar assistência necessária ao enfermo, ensinando ao familiar cuidador os cuidados básicos a serem dispensados ao adoecido, porém, não orientam o autocuidado ao cuidador.Descritores: Educação em saúde; Cuidados Paliativos; Assistência Domiciliar.HEALTH EDUCATION TO THE FAMILY CAREGIVER OF DISEASED CANCER PATIENTS IN PALLIATIVE HOME CAREObjective: analyze how the nurse develops the health education to the familiar caregiver of patients with palliative oncological domiciliary care. Method: descriptive research with a qualitative approach performed with 10 family caregivers of cancer patients registered in the Ophir Loyola Hospital Home Care Service. Results: two categories emerged called: Experience of health education for the family caregiver and Health education at home: nurse’s role in teaching care for the sick and self-care for the family caregiver. Conclusion: the present study found a fragility in nursing care about the accomplishment of health education aimed at self-care of the referred caregiver. We have identified that the latter has sought to perform the necessary assistance to the patient, teaching the family caregiver the basic care to be given to the sick person, but they do not guide the self-care of the caregiver.Descriptors: Health Education; Palliative Care; Home Nursing.EDUCACIÓN EN SALUD AL CUIDADOR FAMILIAR DE LOS ENFERMOS EN CUIDADOS PALIATIVOS ONCOLOGICOS DOMICILIARIOSObjectivo: analizar cómo se desarrolla por el enfermero la educación en salud a los cuidadores familiares de los enfermos en cuidados paliativos domiciliarios. Método: investigación descriptiva con enfoque cualitativo realizada con 10 cuidadores familiares de enfermos por lo cáncer registrados en el Servicio de Atención Domiciliaria del Hospital Ophir Loyola. Resultados: Dos categorias surgieron, denominadas: Experiencia de la educación en salud para el cuidador familiar y Educación en salud en el domicilio: la actuación del enfermero en la enseñanza del cuidado al enfermo y autocuidado de los cuidadores familiares. Conclusión: El presente estudio encontró una debilidad en la asistencia de enfermería en cuanto la realización de la educación en salud orientada al autocuidado del cuidador. Identificamos que los mismos han tratado de realizar la asistencia necesaria a los enfermos enseñando al cuidador familiar la atención básica que debe darse al enfermo, pero no enseñan el autocuidado a los cuidadores.Descriptores: Educación en salud; Cuidados paliativos; Asistencia Domiciliaria.

Abstract 13773: Applied Behavior Change Techniques in Self-care Interventions for Patients With a Chronic Condition

Circulation ◽  
2020 ◽  
Vol 142 (Suppl_3) ◽  
Author(s):  
Barbara Riegel ◽  
Heleen Westland ◽  
Paolo Iovino ◽  
Ingrid Barelds ◽  
Joyce Bruins Slot ◽  
...  
Keyword(s):  
Behavior Change ◽  
Chronic Condition ◽  
Healthcare Providers ◽  
Self Care ◽  
Action Planning ◽  
Future Research ◽  
Behavior Change Techniques ◽  
Care Intervention ◽  
Intervention Trials ◽  
Behavior Change Technique

Introduction: Self-care requires behavior change in patients and healthcare providers play a pivotal role in supporting those changes. Examination of the behavior change techniques used by providers in self-care interventions can provide insights into how self-care behavior is enhanced in patients with a chronic condition. Objective: To quantify the behavior change techniques used to enhance healthy behavior in self-care interventions for patients with a chronic condition. Methods: Studies from a scoping review (n=233) were reviewed to identify behavior change techniques used in studies testing self-care interventions in adults with nine chronic conditions, most of which were CVDs. All studies were published between January 2008 and January 2019. Nine techniques from the Behavior Change Technique Taxonomy V1 (with 93 consensually agreed, distinct techniques) were selected for review because they are commonly used by a broad range of disciplines and have previously been shown to influence behavior change. Results: The 233 studies represent 59,950 patients, mean age 59.5 (±8.3) years, 44% female. Study sample sizes ranged from 24 to 2,445 patients. Most studies focused on DM2 (n=85; 36%), HTN (n=32; 14%) or HF (n=27; 12%). Most interventions targeted only patients (n=207; 89%). Goal setting (n=113; 48%) and problem solving (n=92; 40%) were the behavior change techniques used predominantly. Action planning, feedback and review of behavioral goals were used in 46-60 (20%-26%) studies and most commonly in patients with DM2 or CAD and rarely in patients with HTN or HF. Information about health consequences was used in 46 (20%) studies. Social support (n=17; 7%) and reminders (n=13; 6%) were rarely used. Conclusions: Few behavior change techniques were specified in the published self-care intervention trials. In future research, behavior change techniques and the associated mechanisms of actions need to be specified to support self-care intervention research.

Caring for the Family Caregiver

2020 ◽  
Author(s):  
Elaine Wittenberg ◽  
Joy Goldsmith ◽  
Sandra L. Ragan ◽  
Terri Ann Parnell
Keyword(s):  
Palliative Care ◽  
Health Literacy ◽  
Family Caregiver ◽  
Communication Theory ◽  
Family System ◽  
Interdisciplinary Approach ◽  
Current Data ◽  
Theory And Practice ◽  
The Family ◽  
The Impact

This remarkable work reveals the plight of the family caregiver in chronic illness through the prism of communication. Examining the high cost and poorly addressed exigencies of the caregiver, including health literacy, palliative care, and health outcomes, Elaine Wittenberg, Joy V. Goldsmith, Sandra L. Ragan, and Terri Ann Parnell use an interdisciplinary approach in an effort to identify the impact of communication and its burdens on the caregiver. This team of scholars present four caregiver profiles, the Manager, Carrier, Partner, and Lone caregiver, each emerging from a family system with different patterns of conversational sharing and expectations of conformity. This volume presents a picture of the costs and losses for caregivers that go unseen and remain invisible for stakeholders in the healthcare experience. By synthesizing current data assessing the experiences of caregivers, as well as integrating the narrative experiences of a range of caregivers living through a variety of illnesses and their specific demands, the writers deliver an unflinching gaze at the journey of the caregiver. With an author team comprised of three health communication researchers and a nurse and health literacy expert, this volume integrates literature addressing caregiver needs and burdens, communication theory and practice, and palliative care and health literacy research to present the groundbreaking concept of the caregiver types and an innovative set of support resources to facilitate improved pathways to better care for the caregiver. Their engaging and rigorous writing style integrates the real stories of caregivers across the scope of the book connecting the reader with the people inside the pages and making the book essential for providers, students, clinicians, policymakers, and family caregivers alike.

scholarly journals Informal and formal care among persons with dementia immediately before nursing home admission

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Arnt Egil Ydstebø ◽  
Jurate Šaltytė Benth ◽  
Sverre Bergh ◽  
Geir Selbæk ◽  
Corinna Vossius
Keyword(s):  
Nursing Home ◽  
Social Network ◽  
Informal Care ◽  
Family Caregiver ◽  
Cross Sectional Study ◽  
Nursing Home Admission ◽  
Future Research ◽  
Formal Care ◽  
Cross Sectional ◽  
The Family

Abstract Background Dementia is a care intensive disease, especially in the later stages, implying in many cases a substantial carer burden. This study assesses the use of formal and informal care resources among persons with dementia during the last month before nursing home admission. It also describes main providers of informal care and assesses the extent of informal care rendered by the extended social network. Methods In this cross-sectional study, we collected data about persons with dementia that were newly admitted to a nursing home in Norway. Information about the amount of formal and informal care during the last 4 weeks preceding nursing home admission was collected from the primary caregivers. Clinical data were collected by examining the patients, while sociodemographic data was collected from the patients’ files. Results A total of 395 persons with dementia were included. The amount of informal care provided by the family caregiver was 141.9 h per month SD = 227.4. Co-resident patients received five times more informal care than non-co-residents. Informal care from the extended social network was provided to 212 patients (53.7%) with a mean of 5.6 (SD = 11.2) hours per month and represented 3.8% of the total informal care rendered to the patients. Formal care was provided to 52.7% of the patients with a mean of 18.0 (SD = 50.1) hours per month. Co-residency was significantly associated with more informal care, and the associations varied with respect to age, relation to the caregiver, and the caregiver’s working situation. Good/excellent general health was associated with less formal care. Conclusion Persons with dementia on the verge of admission to a nursing home are mainly supported by the family caregiver, and the use of informal care is particularly high among co-residents. In order to delay nursing home admission, future research should explore the unrealized care potential in extended social networks, as well as the potential for increasing the number of recipients of formal care services.

Validation of a model of family caregiver communication types and related caregiver outcomes

2016 ◽  
Vol 15 (1) ◽  
pp. 3-11 ◽  
Author(s):  
Elaine Wittenberg ◽  
Kate Kravits ◽  
Joy Goldsmith ◽  
Betty Ferrell ◽  
Rebecca Fujinami
Keyword(s):  
Quality Of Life ◽  
Psychological Distress ◽  
Family Communication ◽  
Family Caregiver ◽  
Family System ◽  
Future Research ◽  
Outcomes Measures ◽  
The Family ◽  
The Impact

AbstractObjective:Caring for the family is included as one of the eight domains of quality palliative care, calling attention to the importance of the family system and family communications about cancer during care and treatment of the disease. Previously, a model of family caregiver communication defined four caregiver communication types—Manager, Carrier, Partner, Lone—each with a unique communication pattern. The purpose of the present study was to extend the model of family caregiver communication in cancer care to further understand the impact of family communication burden on caregiving outcomes.Method:This mixed-method study employed fieldnotes from a family caregiver intervention focused on quality of life and self-reported caregiver communication items to identify a specific family caregiver type. Caregiver types were then analyzed using outcome measures on psychological distress, skills preparedness, family inventory of needs, and quality-of-life domains.Results:Corroboration between fieldnotes and self-reported communication for caregivers (n = 21, 16 women, mean age of 53 years) revealed a definitive classification of the four caregiver types (Manager = 6, Carrier = 5, Partner = 6, Lone = 4). Mean scores on self-reported communication items documented different communication patterns congruent with the theoretical framework of the model. Variation in caregiver outcomes measures confirmed the model of family caregiver communication types. Partner and Lone caregivers reported the lowest psychological distress, with Carrier caregivers feeling least prepared and Manager caregivers reporting the lowest physical quality of life.Significance of results:This study illustrates the impact of family communication on caregiving and increases our knowledge and understanding about the role of communication in caregiver burden. The research provides the first evidence-based validation for a family caregiver communication typology and its relationship to caregiver outcomes. Future research is needed to develop and test interventions that target specific caregiver types.

scholarly journals Kesejahteraan Spiritual Keluarga Pasien Stroke dan Kaitannya dengan Depresi

2016 ◽  
Vol 3 (3) ◽  
pp. 129
Author(s):  
Muhamad Zulfatul A’la ◽  
Komarudin Komarudin ◽  
Defi Efendi
Keyword(s):  
Palliative Care ◽  
Family Caregiver ◽  
Depression Scale ◽  
Well Being ◽  
Future Research ◽  
Cross Sectional ◽  
The Family ◽  
Spiritual Well Being ◽  
Depression Assessment ◽  
Cross Sectional Design

<p>Stroke is a one of major problem in palliative care. Spiritual and depression assessment of the family is an important element in the process of palliative care for stroke survivors. The purpose of this study was to know the description of the spiritual well-being among stroke family caregiver family and its relationship with depression. This study used cross-sectional design. Spiritual well-being scale (SWBS) was used to see the spiritual well-being of the family and the Center for Epidemiologycal Studies Depression Scale (CES-D) to measure depression and was filled in by 44 Stroke families. The results of the study reported that the spiritual well-being of stroke family caregiver was in the high category and depression in the medium category. There was a relationship between the spiritual well-being of the family and depression in stroke patients (p=0.000). This study suggest a comprehensive assessment of the spiritual well-being and depression in stroke family and the need for future research about family interventions to decrease depression and increase spiritual well-being.</p>

scholarly journals Informal and formal care among persons with dementia immediately before nursing home admission.

2019 ◽  
Author(s):  
Arnt Egil Ydstebø ◽  
J. Šaltytė Benth ◽  
Sverre Bergh ◽  
Geir Selbæk ◽  
Corinna Vossius
Keyword(s):  
Nursing Home ◽  
Social Network ◽  
Informal Care ◽  
Family Caregiver ◽  
Nursing Home Admission ◽  
Future Research ◽  
Formal Care ◽  
Cross Sectional ◽  
Living Situation ◽  
The Family

Abstract Background: This study assesses the use of formal and informal care resources among home-dwelling persons with dementia during the last month before nursing home admission. It also describes providers of informal care and assesses clinical and sociodemographic factors associated with the use of care stratified by living situation. Methods: In this cross-sectional study, data were collected from 47 nursing homes in four counties in Norway from January 2012 to August 2014. The subjects were persons with dementia who were newly admitted to a permanent nursing home. The main outcome measures were the use of formal care and informal care by the family caregiver and the extended social network. Results: A total of 395 persons were included. The amount of informal care provided by the family caregiver was 141.9 hours (SD=227.4). Co-resident patients received five times more informal care than non-co-residents. Informal care from the extended social network was provided to 212 patients (53.7%) with a mean of 5.6 (SD=11.2) hours per month. Formal care was provided to 52.7% of the patients with a mean of 18.0 (SD=50.1) hours per month. Co-residency was significantly associated with more informal care, and the associations varied with respect to age, relation to the caregiver, and the caregiver’s working situation. Good/excellent general health was associated with less formal care. Conclusion: Persons with dementia on the verge of admission to a nursing home are mostly supported by the family caregiver, and the use of informal care is particularly high among co-residents. Future research should explore the unrealized care potential in extended social networks, as well as the potential for increasing the number of recipients and utilization of formal care services directed at persons with dementia and their caregivers in order to delay nursing home admission.

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