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Journal articles on the topic 'Caregivers Families'
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1
Everhart, Robin S., Sarah Miller, Gillian G. Leibach, Alexandra L. Dahl, and Daphne Koinis-Mitchell. "Caregiver Asthma in Urban Families." Journal of School Nursing 34, no. 2 (January 17, 2017): 108–13. http://dx.doi.org/10.1177/1059840516689326.
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Asthma is a significant contributor to missed school days, especially for children living in urban settings. This preliminary study examined the impact of caregiver asthma on school absenteeism in a sample of 102 urban children with asthma from African American, Latino, and non-Latino White backgrounds. Caregivers and children participated in a single research session; 32 caregivers had asthma. Children of caregivers with asthma missed more days of school than children whose caregivers did not have asthma (3.97 vs. 2.43 days, p < .05, Cohen’s d = .40). Other indicators of child asthma morbidity (e.g., hospitalizations) did not differ across caregiver asthma status. Findings highlight that caregiver asthma may be an added risk factor for school absenteeism among children with asthma. For children with a high frequency of asthma-related school absenteeism, school nurses may find it useful to provide educational resources and referrals for caregivers with asthma.
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Strang, Susann, Josefin Fährn, Peter Strang, Agneta Ronstad, and Louise Danielsson. "Support to informal caregivers of patients with severe chronic obstructive pulmonary disease: a qualitative study of caregivers’ and professionals’ experiences in Swedish hospitals." BMJ Open 9, no. 8 (August 2019): e028720. http://dx.doi.org/10.1136/bmjopen-2018-028720.
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ObjectivesInformal caregivers of patients with chronic obstructive pulmonary disease (COPD) experience a heavy caregiver burden, but few studies have explored what support they need. The aim of this study was to describe perceptions of healthcare support to informal caregivers, both from the family caregiver’s and the staff’s perspective.DesignA qualitative interview study involving semi-structured interviews and analysed with content analysis.ParticipantsIn total, 54 participated: 36 informal caregivers of patients with severe (stage 3–4) COPD and 17 healthcare staff.ResultsTwo main themes emerged from the analysis: (1) Ambiguity impedes provision of support. Both caregivers and staff experienced ambiguity. The informal caregivers needed emotional, practical and informational support but talked about unclear expectations, while the staff described an uncertainty about their duties regarding the families. There were no routines to unburden the families. Moreover, language and cultural barriers hampered their efforts. (2) Knowledgeable and perceptive communication is key to support. Both caregivers and staff described positive experiences of dialogue. The dialogue may facilitate means to caregiver support and was a support in itself.ConclusionsOur findings suggest that strategies and routines for caregiver support, including communication skills among the staff, should be developed, to move toward the family perspective advocated in palliative- and nursing family care.
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Woerpel, Allison J., Willie Winston, and Sonya S. Brady. "Stressful Life Circumstances, Resources for Support, and African American Children’s Psychological Symptoms." Journal of Black Psychology 43, no. 4 (April 26, 2016): 327–44. http://dx.doi.org/10.1177/0095798416645717.
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This brief report examines African American children’s and caregivers’ exposure to stressors and perceived support in relation to children’s internalizing and externalizing symptoms. Forty-six children aged 8 to 12 years and their primary caregivers were recruited from an urban school in the Midwestern United States and interviewed separately. Adjusting for child’s age and gender, caregiver’s gender, and number of caregivers in the family, child-reported stressful life events were associated with child-reported internalizing and externalizing symptoms. When children reported greater support from caregivers, children reported fewer externalizing symptoms and caregivers reported fewer oppositional behaviors and ADHD symptoms on the part of their child. Caregivers’ health- and relationship-related stressors were associated with child-reported externalizing symptoms, as well as caregiver-reported ADHD symptoms. Family-based mental health services within schools and communities may improve caregiver and child support systems, reduce caregiver-child conflict, and promote resilience to stress among urban, low-income African American families.
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Wojtaszczyk, Ann, Myra Glajchen, Russell K. Portenoy, Maria Berdella, Patricia Walker, Malcolm Barrett, Jack Chen, et al. "Trajectories of caregiver burden in families of adult cystic fibrosis patients." Palliative and Supportive Care 16, no. 6 (October 17, 2017): 732–40. http://dx.doi.org/10.1017/s1478951517000918.
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ABSTRACTObjectives:Little is known about the experience of family caregivers of adults with cystic fibrosis (CF). This information is important for the identification of caregivers at risk for burden.Methods:This was a longitudinal analysis of survey data obtained from caregivers of adult CF patients participating in an early intervention palliative care trial. Caregivers completed the validated Brief Assessment Scale for Caregivers (BASC) repeatedly over a 28-month period. Mixed-effects modeling evaluated multivariate associations with positive and negative caregiver perceptions over time.Results:Of the 54 caregivers, 47.9% were spouses. The mean age was 50.9 years (SD = 13.2); 72.2% were women; 75.9% were married; and 63.0% were employed. At baseline, the BASC revealed large variations in positive and negative perceptions of caregiving. Although average scores over time were unchanging, variation was greater across caregivers than within caregivers (0.49 vs. 0.27, respectively). At baseline, the positive impact of caregiving in the sample was higher than the negative impact. Multivariate analysis revealed that patients' baseline pulmonary function and their full-time employment status predicted caregiver burden over time.Significance of results:Caregivers of CF patients varied in their positive and negative caregiving experiences, although burden levels in individual caregivers were stable over time. When the disease was advanced, caregivers of CF patients experienced more overall burden but also more positive impact. This suggests that the role of caregivers may become more meaningful as disease severity worsens. In addition, full-time patient employment was associated with lower caregiver burden regardless of disease severity. This suggests that burden in CF caregivers may be predicted by financial strain or benefits conferred by patient employment. These associations require further investigation to determine whether highly burdened caregivers can be identified and assisted using tailored interventions.
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Roberto, Karen, Jyoti Savla, and Steven Zarit. "When the Day Goes Awry: Families Caring for Persons With Dementia." Innovation in Aging 4, Supplement_1 (December 1, 2020): 638–39. http://dx.doi.org/10.1093/geroni/igaa057.2190.
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Abstract The daily lives of family caregivers of persons with dementia (PwD) often require that they manage multiple competing demands in a context of unpredictability. Memory and behavior changes associated with dementia can cause PwD to act in random and irrational ways that create stress and influence all aspects of caregivers’ everyday life. Supportive others, including informal helpers and formal service professionals, should provide relief to primary caregivers; however, help may not alleviate caregiver stress and can sometimes compound the burden of care. This symposium draws on daily diary surveys and face-to-face interviews to focus on four aspects of managing everyday care of PwD among family caregivers in rural areas. Brandy Renee McCann explores how caregivers’ vigilance on behalf of PwD care quality interacts with service use. Karen Roberto examines the ways in which caregivers manage PwD resistance to help, including their use of forceful care strategies. Rosemary Blieszner focuses on competing caregiver roles and demands that may contribute to or alleviate caregiver stress. Tina Savla addresses the unexpected, and often hidden, challenges involved in using formal services. Collectively, the four presentations provide in-depth insight into the complicated daily lives of families coping with dementia and the ways in which they meet the demands of full-time caregiving under often difficult and challenging circumstances. Discussant Steve Zarit considers the efficacy of these management strategies for various aspects of everyday care and offers suggestions for future research and person-centered programs and interventions to reduce health disparities among caregivers in rural areas.
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Su, Jian-An, and Chih-Cheng Chang. "Association Between Family Caregiver Burden and Affiliate Stigma in the Families of People with Dementia." International Journal of Environmental Research and Public Health 17, no. 8 (April 17, 2020): 2772. http://dx.doi.org/10.3390/ijerph17082772.
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Family caregivers of people with dementia (PWD) have a heavy care burden. Affiliate stigma is the stigma internalized by individuals associated with PWD. Limited research has addressed the affiliate stigma among caregivers of PWD and its influence on caregiver burden. Thus, our study investigated the burden of caregivers of PWD and its relationship with affiliate stigma. In addition, we examined the factors related to affiliate stigma. This cross-sectional study was conducted in a general hospital in Taiwan. We recruited 270 PWD and their family caregivers from the outpatient department. Relevant demographic and clinical assessment data of the patients and caregivers were evaluated. Regression analysis was performed to examine the factors associated with affiliate stigma. In total, 23.7% of the family caregivers had depression and 37.4% had anxiety. Male caregivers had higher levels of anxiety and heavier care burdens related to affiliate stigma compared with female caregivers. Moreover, characteristics such as younger age and low levels of dependence in daily activities among PWD were associated with increased affiliate stigma. A higher family caregiver burden was related to more severe affiliate stigma. Interventions for decreasing the family caregiver burden might reduce the effect of affiliate stigma.
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Wang, Tianqian, and Jeffrey Alvin Anderson. "Predicting Caregiver Strain to Improve Supports for the Caregivers of Children With Emotional and Behavioral Disorders." Journal of Family Issues 39, no. 4 (December 26, 2016): 896–916. http://dx.doi.org/10.1177/0192513x16683986.
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Caregivers of children/youth with emotional and behavioral disorders often can experience significant strain associated with the day-to-day care of their children, and reducing strain can bring tremendous advantages to children, caregivers, and families. This study examines several predictors of caregiver strain hypothesized to be related to caring for children with emotional and behavioral disorders. Specifically, children’s symptoms, child and caregiver demographics, caregiver mental health, and caregiver relationship to child were examined to better understand both objective and subjective strain among a sample of families participating in a system of care in southeast Indiana. Regression analyses demonstrated that children’s externalizing symptoms are the strongest predictor for both objective strain and subjective strain. Moreover, caregivers who had experienced mental health issues reported higher levels of subjective externalized strain; biological parents tend to experience higher subjective internalized strain than other relative caregivers do. Implications for practitioners, caregivers, and future research are also discussed.
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Hwang, Boyoung, Kirsten E. Fleischmann, Jill Howie-Esquivel, Nancy A. Stotts, and Kathleen Dracup. "Caregiving for Patients With Heart Failure: Impact on Patients’ Families." American Journal of Critical Care 20, no. 6 (November 1, 2011): 431–42. http://dx.doi.org/10.4037/ajcc2011472.
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Background Factors that affect the impact of caregiving on patients’ family members who provide care to patients with heart failure have not been adequately addressed. In addition, social support and positive aspects of caregiving have received little attention. Objective To identify factors associated with the impact of caregiving. Methods Self-report data were collected from 76 dyads of patients with heart failure and their family caregivers. Clinical data were obtained from medical records. Results A sense of less family support for caregiving was associated with a higher New York Heart Association class of heart failure, being a nonspousal caregiver, lower caregivers’ perceived control, and less social support. More disruption of caregivers’ schedules was associated with higher class of heart failure, more care tasks, and less social support. Greater impact of caregiving on caregivers’ health was related to more recent patient hospitalization, lower caregivers’ perceived control, and less social support. Nonwhite caregivers and caregivers whose family member had fewer emergency department visits felt more positive about caregiving than did other caregivers. Social support had a moderating effect on the relationship between patients’ comorbid conditions and positive aspects of caregiving. Conclusions Caregiving has both positive and negative effects on family caregivers of patients with heart failure. The findings suggest the need for interventions to increase caregivers’ sense of control and social support. Family caregivers may need additional support immediately after patient hospitalizations to minimize the negative impact of caregiving.
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McKee, Grace B., Laiene Olabarrieta-Landa, Paula K. Pérez-Delgadillo, Ricardo Valdivia-Tangarife, Teresita Villaseñor-Cabrera, Daniela Ramos-Usuga, Paul B. Perrin, and Juan Carlos Arango-Lasprilla. "Longitudinal Growth Curve Trajectories of Family Dynamics after Pediatric Traumatic Brain Injury in Mexico." International Journal of Environmental Research and Public Health 17, no. 22 (November 17, 2020): 8508. http://dx.doi.org/10.3390/ijerph17228508.
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Pediatric traumatic brain injury (TBI) represents a serious public health concern. Family members are often caregivers for children with TBI, which can result in a significant strain on familial relationships. Research is needed to examine aspects of family functioning in the context of recovery post-TBI, especially in Latin America, where cultural norms may reinforce caregiving by family members, but where resources for these caregivers may be scarce. This study examined caregiver-reported family satisfaction, communication, cohesion, and flexibility at three time points in the year post-injury for 46 families of a child with TBI in comparison to healthy control families. Families experiencing pediatric TBI were recruited from a large hospital in Guadalajara, Mexico, while healthy controls were recruited from a local educational center. Results from multilevel growth curve models demonstrated that caregivers of children with a TBI reported significantly worse family functioning than controls at each assessment. Families experiencing pediatric TBI were unable to attain the level of functioning of controls during the time span studied, suggesting that these families are likely to experience long-term disruptions in family functioning. The current study highlights the need for family-level intervention programs to target functioning for families affected by pediatric TBI who are at risk for difficulties within a rehabilitation context.
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Verma, Rahul, Yasna Mehdian, Neel Sheth, Kathy Netten, Jean Vinette, Ashley Edwards, Joanna Polyviou, Julia Orkin, and Reshma Amin. "101 Screening for Psychosocial Risk in Families of Children with Medical Complexity (CMC)." Paediatrics & Child Health 25, Supplement_2 (August 2020): e42-e42. http://dx.doi.org/10.1093/pch/pxaa068.100.
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Abstract Background Children with medical complexity (CMC) are defined by their medical fragility, dependence on assistive technology and substantial care needs. Family caregivers of CMC have unique challenges, such as prolonged hospitalizations and poor care coordination, which result in extensive caregiver stress. There is a great need to quantify the level of psychosocial stress and resilience in these caregivers to allow for appropriate allocation of health care resources. The Psychosocial Assessment Tool (PAT) is a brief parent-reported screening tool for measuring psychosocial risk in caregivers of pediatric populations. This is the first study to use the PAT in children with medical complexity. Objectives To quantify psychosocial risk in family caregivers of children diagnosed with medical complexity. To identify predictors of caregiver distress based on their sociodemographic factors. It was hypothesized that the extensive health demands of CMC will result in high amounts of chronic, ongoing caregiver distress relative to the previously studied pediatric populations. Design/Methods This cross-sectional study was conducted at The Hospital for Sick Children, Toronto, Canada. Family caregivers of children with medical complexity completed the PAT questionnaires during regularly scheduled Long-Term Ventilation and Complex Care clinic visits. Based on the overall PAT scores, caregivers were stratified as “Universal” low risk (<1.0), “Targeted” intermediate risk (1.0 to 1.9), or “Clinical” high risk (≥2.0). Multiple linear regression analysis was performed to examine the effect of sociodemographic variables and illness severity on total PAT scores. Comparisons with previous pediatric studies were made using T-test statistics. Results 136 [103 females (76%)] family caregivers completed the study. Mean PAT score was 1.17 (SD = 0.740). 61 (44.85%) caregivers were classified as Universal risk, 60 (44.12%) as Targeted risk, and 15 (11.03%) as Clinical risk. Compared to previously studied pediatric populations, our CMC have the second-highest overall PAT scores, which are also substantially weighted towards the higher risk categories (Table 1). Multiple linear regression analysis demonstrated that subjective report of financial hardship by caregivers is a significant predictor of total PAT scores (p < 0.05). Conclusion Family caregivers of children with medical complexity report PAT scores amongst the highest of all pediatric populations. These caregivers experience significant psychosocial distress, demonstrated by larger proportions of caregivers in the Targeted and Clinical risk categories. Therefore, psychosocial interventions including financial assistance are urgently needed in this population.
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Conway, Kristin M., Katy Eichinger, Christina Trout, Paul A. Romitti, Katherine D. Mathews, and Shree K. Pandya. "Needs management in families affected by childhood-onset dystrophinopathies." SAGE Open Medicine 7 (January 2019): 205031211983447. http://dx.doi.org/10.1177/2050312119834470.
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Purpose: To collect information about the needs of families affected by childhood-onset dystrophinopathies residing in the United States. Methods: Individuals with an eligible dystrophinopathy were identified by the Muscular Dystrophy Surveillance, Tracking, and Research network. Between September 2008 and December 2012, 272 caregivers completed a 48-item survey about needs related to information, healthcare services, psychosocial issues, finances, caregiver demographics, and the individual’s functioning. Results: Overall, at least 80% of the survey items were identified as needs for more than one-half of caregivers. Among the needs identified, physical health and access to information were currently managed for most caregivers. Items identified as needed but managed less consistently were funding for needs not covered by insurance and psychosocial support. Conclusions: Healthcare providers, public health practitioners, and policymakers should be aware of the many needs reported by caregivers, and focus on addressing gaps in provision of needed financial and psychosocial services.
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Kartika, Annisa Wuri, Muladefi Choiriyah, Niko Dima Kristianingrum, Linda Wieke Noviyanti, and Endah Panca Lidya Fatma. "Pelatihan Tugas Perawatan Kesehatan Keluarga Caregiver Lansia dalam Pogram RURAL (Rumah Ramah Lansia)." Jurnal Pengabdian kepada Masyarakat (Indonesian Journal of Community Engagement) 5, no. 3 (December 1, 2019): 448. http://dx.doi.org/10.22146/jpkm.45139.
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The decline in function due to aging accompanied by health problems in the elderly has an impact on the ability of the elderly in activity daily living (ADL) and health care. The role of the family is very important in health care assistance to the elderly. Caregiver skills accompanied by environmental aspect are important factors for elderly with chronic illness at home. This community service aims to improve the caregiver's ability to provide care to the elderly with chronic illness. RURAL (Rumah Ramah Lansia) is activity to create a suitable environment for the elderly in terms of physical and psychosocial environment. The families trained as a caregivers which are carried out in RW 4, Jatimulyo, Malang City in January - March 2018. The activities of the program is health education and skill training about caring for elderly. The results are 70 percent of families have good ability in carrying out family health care tasks; knowledge about elderly care at home is good with an average knowledge value of 8.6. From these results it can be concluded that training for caregivers is useful to improve the ability of caregivers and health status of the elderly.Keywords: caregiver care ability; chronic disease; elderly care at home.
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Meadan, Hedda, Moon Y. Chung, Michelle M. Sands, and Melinda R. Snodgrass. "The Cascading Coaching Model for Supporting Service Providers, Caregivers, and Children." Journal of Special Education 54, no. 2 (November 9, 2019): 113–25. http://dx.doi.org/10.1177/0022466919884070.
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Teaching caregivers to support their young children’s language development is recommended as an effective early language intervention, and caregiver-implemented interventions are recognized as evidence-based. However, as the natural change agents for training and coaching caregivers, early intervention (EI) service providers are in need of professional development to effectively coach caregivers to use interventions with their child. The purpose of this study was to examine the Coaching Caregivers Professional Development program (CoCare PD) in which researchers train and coach EI service providers via telepractice in caregiver coaching, a set of skills useful in nurturing partnerships with families to support caregivers’ use of evidence-based practices with their young children with disabilities. A single-case research study across four EI service providers was conducted and findings support a functional relation between training and coaching EI service providers via telepractice and providers’ use of coaching practices with families on their caseload.
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BeLue, R., K. Ndiaye, PY Miranda, F. Ndao, and P. Canagarajah. "Diabetes management in Senegalese families: A dyadic-narrative illustration." Chronic Illness 14, no. 3 (August 1, 2017): 182–93. http://dx.doi.org/10.1177/1742395317719141.
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Objectives In many Sub-Saharan African cultures, diabetes self-management behaviors such as dietary adherence do not occur in isolation but are carried out in the context of local culture, a significant factor in shaping those health behaviors. Methods Using a family-based narrative approach, we explore how Senegalese families manage diabetes. We interviewed twenty people living with diabetes and selected family caregivers from MBour, Senegal. Results We found that people living with diabetes experienced physical, emotional, and financial stressors as a result of managing their condition. In addition, family caregivers play an important role in managing their family member's diabetes. Discussion The act of caregiving affects caregiver diabetes prevention behaviors. In some cases, this caregiving role leads to an increase of healthy behaviors such as reducing dietary sugar; however, in some cases, caregivers do not see the need to engage in healthy behaviors. Diabetes prevention and management interventions that support both Senegalese people living with diabetes and their family caregivers are warranted.
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Fong, Hiu-fai, Colleen E. Bennett, Valerie Mondestin, Philip V. Scribano, Cynthia Mollen, and Joanne N. Wood. "The Impact of Child Sexual Abuse Discovery on Caregivers and Families: A Qualitative Study." Journal of Interpersonal Violence 35, no. 21-22 (June 14, 2017): 4189–215. http://dx.doi.org/10.1177/0886260517714437.
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In this qualitative study with nonoffending caregivers of suspected child sexual abuse victims, we aimed to explore the perceived impact of sexual abuse discovery on caregivers and their families, and caregivers’ attitudes about mental health services for themselves. We conducted semistructured, in-person interviews with 22 nonoffending caregivers of suspected sexual abuse victims <13 years old seen at a child advocacy center in Philadelphia. Interviews were audio-recorded, transcribed, coded, and analyzed using modified grounded theory. Recruitment continued until thematic saturation was reached. We found that caregivers experienced significant emotional and psychological distress, characterized by anger, depressed mood, and guilt, after learning that their child may have been sexually abused. We identified four specific sources of caregiver distress: concerns about their child, negative beliefs about their parenting abilities, family members’ actions and behaviors, and memories of their own past maltreatment experiences. Some caregivers described worsening family relationships after discovery of their child’s sexual abuse, while others reported increased family cohesion. Finally, we found that most caregivers in this study believed that mental health services for themselves were necessary or beneficial to help them cope with the impact of their child’s sexual abuse. These results highlight the need for professionals working with families affected by sexual abuse to assess the emotional and psychological needs of nonoffending caregivers and offer mental health services. Helping caregivers link to mental health services, tailored to their unique needs after sexual abuse discovery, may be an acceptable strategy to improve caregiver and child outcomes after sexual abuse.
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Aung, Thin Nyein Nyein, Myo Nyein Aung, Saiyud Moolphate, Yuka Koyanagi, Siripen Supakankunti, and Motoyuki Yuasa. "Caregiver Burden and Associated Factors for the Respite Care Needs among the Family Caregivers of Community Dwelling Senior Citizens in Chiang Mai, Northern Thailand." International Journal of Environmental Research and Public Health 18, no. 11 (May 30, 2021): 5873. http://dx.doi.org/10.3390/ijerph18115873.
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Background: Families are the backbone of caregiving for older adults living in communities. This is a tradition common to Thailand and many low- and middle-income countries where formal long-term care services are not so available or accessible. Therefore, population aging demands more and more young people engaging as family caregivers. Informal caregiving can become an unexpected duty for anyone anytime. However, studies measuring the burden of informal caregivers are limited. We aimed to determine the caregiver burden, both from the perspective of the caregivers as well as that of their care recipients. Method: We used the baseline survey data from a cluster randomized controlled trial providing a community integrated intermediary care (CIIC) service for seniors in Chiang Mai, Thailand, TCTR20190412004. Study participants were 867 pairs of older adults and their primary family caregivers. Descriptive analysis explored the characteristics of the caregivers and binary logistic regression identified factors influencing the caregivers’ burden. Results: The mean age of family caregivers was 55.27 ± 13.7 years and 5.5% indicated the need for respite care with Caregiver Burden Inventory (CBI) scores ≥24. The highest burden was noted in the time-dependence burden domain (25.7%). The significant associated factors affecting CBI ≥24 were as follows: caregivers older than 60 years, being female, current smokers, having diabetes, and caring for seniors with probable depression and moderate to severe dependency. Conclusions: A quarter of caregivers can have their careers disturbed because of the time consumed with caregiving. Policies to assist families and interventions, such as respite service, care capacity building, official leave for caregiving, etc., may reduce the burden of families struggling with informal care chores. Furthermore, caregiver burden measurements can be applied as a screening tool to assess long-term care needs, complementing the dependency assessment. Finally, implementation research is required to determine the effectiveness of respite care services for older people in Thailand.
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Holland, Diane E., Catherine E. Vanderboom, Joan M. Griffin, Ann Marie Dose, Ellen M. Wild, Cory J. Ingram, and Jorge Loyo Lopez. "Supporting family caregivers: Needs beyond direct caregiving." Journal of Clinical Oncology 37, no. 31_suppl (November 1, 2019): 16. http://dx.doi.org/10.1200/jco.2019.37.31_suppl.16.
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16 Background: Family caregivers have been shown to have their own unique challenges when caring for someone with advanced cancer. These challenges may be more pronounced among rural caregivers. We present early lessons regarding caregiver needs from an intervention study that provides teaching, guidance, and counseling to rural family caregivers of individuals who received palliative care in the hospital and transitioned home. Methods: A randomized clinical trial is underway to test the efficacy of a care model that focuses on supporting rural family caregivers’ medical needs, self-care, and direct caregiving needs. We have developed a nurse-led, technology-enhanced intervention for family caregivers delivered over 8 weeks after hospital discharge of those receiving palliative care consults. The intervention includes video and phone visits between a palliative care nurse and caregiver. Caregiver needs and nurse strategies are documented using a standardized terminology in an electronic datafile. Results: Preliminary data from 21 family caregivers of individuals with advanced cancer who completed the intervention to date indicate caregivers personally had an average of 2.2 chronic conditions (up to 10) and were taking an average of 3.14 (up to 11) medications. In addition to challenges providing direct care, caregivers reported difficulty managing stress or depression (7/21; 33.3%); issues related to grief (6/21; 28.5%); inadequate sleep and rest (6/21; 28.5%), low or no income or uninsured medical expenses (5/21; 23.8%); and interpersonal challenges within families and with friends (5/21, 23.8%). Conclusions: Preliminary data from our study suggest that assessing the caregiver’s individual needs related to well being and self-care as well as direct caregiving is imperative to delivering caregiver support services that can improve the ability of family caregivers to provide care for their loved ones with advanced cancer. Clinical trial information: NCT03339271.
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Mai, Katherine, Renee K. Davis, Sue Hamilton, Candace Robertson-James, Sharon Calaman, and Renee M. Turchi. "Identifying Caregiver Needs for Children With a Tracheostomy Living at Home." Clinical Pediatrics 59, no. 13 (July 16, 2020): 1169–81. http://dx.doi.org/10.1177/0009922820941209.
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This study sought to understand caregiver needs of children with tracheostomies (CWT) living at home and inform development of standardized tracheostomy simulation training curricula. Long-term goals are decreasing hospital readmissions following tracheostomy placement and improving family experiences while implementing a medical home model. We recruited caregivers of CWT and conducted semistructured interviews, subsequently recorded, transcribed, and analyzed for emerging themes using NVivo. Demographic data were collected via quantitative surveys. Twenty-seven caregivers participated. Emerging themes included the following: (1) caregivers felt overwhelmed, sad, frightened when learning need for tracheostomy; (2) training described as adequate, but individualized training desired; (3) families felt prepared to go home, but transition was difficult; (4) home nursing care fraught with difficulty and yet essential for families of CWT. Families of CWT have specific needs related to discharge training, resources, support, and home nursing. Provider understanding of caregiver needs is essential for child well-being, patient-/family-centered care, and may improve health outcomes.
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Jamali, Alireza, Maryam Karimpour, Seyed Hassan Saneii, Ata Farajzadeh, and Malek Amini. "Factors Affecting the Caregiver Difficulties in Caring of Children With Cerebral Palsy." Function and Disability Journal 3, no. 1 (October 28, 2020): 1–10. http://dx.doi.org/10.32598/fdj.3.66.1.
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Background and Objectives: Cerebral Palsy (CP) can trouble caregivers in the families of children with cerebral palsy. This study aimed to investigate the factors affecting caregiver troubles of the families of children with CP. Methods: In this cross-sectional study, 121 children with CP and their parents participated. Factors such as gross motor function, manual ability, communication function, eating and drinking abilities, seizure, IQ, age, gender, auditory and visual problems were evaluated in children, and their predictive power to the caregiver difficulties was measured. Results: The Mean±SD of age of the children in the study was 9.7±4.6 years. The linear regression results showed that none of the evaluated factors were predictors of caregiver difficulties. Conclusion: The present study showed that none of the factors mentioned could predict caregivers’ troubles. Future studies on the factors affecting the caregiver difficulty should be conducted to provide additional information or to draw more complex models to describe caregivers’ difficulties in parents of children with CP in Iran.
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Prudencio, Gabriela, and Laura Gitlin. "Family Caregiver Assessments: What Have We Learned From Assessments Across Populations and Health Conditions?" Innovation in Aging 4, Supplement_1 (December 1, 2020): 689–90. http://dx.doi.org/10.1093/geroni/igaa057.2410.
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Abstract This symposium will bring together research on assessments of family caregivers for older individuals with different health conditions and discuss the components of effective assessments. Comprehensive characterizations of caregivers are essential due to an increase in the demand on caregivers, and how intense care contexts contribute to the caregiver’s decline in health and diminished capacity to provide quality care. According to Caregiving in the U.S. 2020 (n=1,400), only 13% of caregivers were asked by healthcare professionals what they needed to take care of themselves. Peer-reviewed studies have reported that caregivers are often reluctant to self-identify and to ask for the help that they need for themselves and those in their care. Since supports to caregivers have historically relied on this self-identification, the first presentation (Grace Whiting) will focus on the work NAC has done to build pathways between caregivers and supportive services to increase availability, accessibility, and patient-centeredness. The second presentation (Esther Friedman) will identify and discuss the barriers to fully incorporating family caregivers into the health care team, as well as the solutions for removing barriers. The next two presentations, respectively, will focus on characterizing the prevalence, burden, and unmet needs of caregivers of cancer patients (Erin Kent), and the unmet needs of families of adults with intellectual and development disabilities (Tamar Heller). The final presentation will explore caregiver readiness in dementia care using the Tailored Activity Program (TAP) and how TAP interventionists can use readiness scores to determine caregiver’s capacity (Katherine Marx).
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Purwaningsih, Purwaningsih, Elida Ulfiana, and Trias Isrichawati. "ANALISIS FAKTOR YANG MEMPENGARUHI KEMAMPUAN ADAPTASI FAMILY CAREGIVER DALAM MERAWAT KELUARGA DENGAN KANKER STADIUM AKHIR DI POLI ONKOLOGI RSUD DR. SOETOMO SURABAYA." Critical Medical and Surgical Nursing Journal 9, no. 1 (June 30, 2020): 17. http://dx.doi.org/10.20473/cmsnj.v9i1.18456.
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Introduction: Caring for family members with cancer takes a long time. Various problems that arise during treatment will have an impact on the physical condition and psychological care giver so that this will have an impact on family adaptation. The purpose of this study was to analyze the factors that influence the adaptation ability of family caregivers who care for families with terminal condition cancer in the Oncology Poly RSUD Dr. Soetomo Surabaya. Methods: A cross-sectional study design. The population in this study are families who care for family members with terminal condition cancer in the Oncology Polyclinic Dr. Soetomo as many as 138 respondents were obtained by purposive sampling. The independent variables are attitude, trust, family support, coping mechanisms, and role functions while the dependent variable is the adaptability of family caregiver who care for families with terminal condition cancer. The research instrument used questionnaire attitudes, beliefs, family support, coping mechanisms, role functions and adaptability. Data analysis using Spearman Rho with significance level p ≤ 0.05. Results: Attitudes, family support, coping mechanisms, role functions are related to family caregiver's adaptability, while trust is not related to family caregiver's adaptability. Conclusion: Adaptability is needed for family caregivers in caring for families with terminal condition cancer. Future researchers are expected to intervene further to improve family support and adaptive coping mechanisms to help overcome problems that arise during the treatment of patients with cancer. Keywords: Attitude, Trust, Family Support, Coping Mechanisms, Role Function, Terminal Condition Cancer
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Kunwar, D., S. Lamichhane, N. Pradhan, B. Shrestha, S. Khadka, K. Gautam, and A. Risal. "The Study of Burden of Family Caregivers of Patients Living with Psychiatric Disorders in Remote Area of Nepal." Kathmandu University Medical Journal 18, no. 2 (December 4, 2020): 41–45. http://dx.doi.org/10.3126/kumj.v18i2.33224.
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Background Family caregivers of psychiatric disorders likely to face burden. There is a paucity of data regarding the caregiver burden in psychiatric disorders in context of Nepal.
Objective To study the caregiver burden in families with psychiatric illness and to find association between socio-demographic variables and caregiver burden in families with psychiatric illness.
Method This is an analytical cross-sectional study. The participants (n=96) were caregiver of patients visiting outpatient department of two government of Nepal primary health care centers namely, Panchkhal Primary Health Care Center (PHC) Kavre District and Barhabise Health Care Center Sindhupalchowk district. The sample size has been determined by using statistical formula. Family burden assessment schedule (FBIS) was used for the study.
Result The majority of the caregivers were females 56.3%. Most of the caregivers were aged below 45 years 54.2%. The large number of participants were single or separated 74%. The mean score of family burden assessment schedule was 27 ± 9.8 (range 0 to 48) with positive rate of 59.4%.Among the objective burden domains disruption of family leisure 61.5% was the most frequently reported burden. The subjective burden was reported in 95%. There were significant differential demographic associations with different domains of caregivers’ burden.
Conclusion Caregivers of Psychiatric patients experience different kind of burden of care. Our findings highlight the support to the family members to reduce their burden.
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Ritchwood, Tiarney D., Isha W. Metzger, Terrinieka W. Powell, Giselle Corbie-Smith, Mysha Wynn, Feng-Chang Lin, and Aletha Y. Akers. "How Does Pubertal Development Impact Caregiver-Adolescent Communication About Sex in Rural, African American Families? An Examination of Mediation Effects." Journal of Early Adolescence 39, no. 8 (October 29, 2018): 1129–53. http://dx.doi.org/10.1177/0272431618806054.
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This study examined the relationship between pubertal development and type of caregiver-adolescent communication about sex (CACS) among 441 African American caregivers participating in an intervention trial in rural North Carolina. We assessed CACS about general sexual health topics and positive aspects of sexuality. Caregivers’ attitudes and self-efficacy for CACS, and open communication style were examined as potential mediators. Caregivers engaged in low levels of communication about sex regardless of type. Among caregivers of males, pubertal development was associated with greater communication about general sexual health, which was mediated by self-efficacy for CACS. Among caregivers of females, pubertal development was associated with less communication about general and positive sexual health topics; however, there were no mediating factors. These findings highlight the predictors of CACS among young men and women after pubertal onset. Age appropriate, practical guidance for initiating CACS may be critical for ensuring caregiver talk about sex.
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Nakayama, Gen, Shoichi Masumoto, Junji Haruta, and Tetsuhiro Maeno. "Measuring family caregivers’ experience of interprofessional care for patients and families: development of the Japanese version of the Caregivers’ Experience Instrument." Family Practice 37, no. 6 (June 26, 2020): 854–61. http://dx.doi.org/10.1093/fampra/cmaa059.
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Abstract Background Improving individuals’ experience of care is now a critical goal of health care systems. Although a number of instruments have been developed to measure experience of care, few instruments measure family caregivers’ experience of interprofessional care for patients and families. Objective To develop the Japanese version of the Caregivers’ Experience Instrument (J-IEXPAC CAREGIVERS) and to investigate its validity in assessing quality of integrated care for both patients with chronic conditions and their family caregivers, from the caregivers’ perspective, in Japan. Methods We used a cross-sectional questionnaire survey to test the validity and internal consistency of J-IEXPAC CAREGIVERS. Four hundred family caregivers were recruited in three municipalities. We evaluated the feasibility, structural validity, internal consistency and hypothesis testing for construct validity of the scale. Results A total of 274 (68.5%) questionnaires were analysed. Confirmatory factor analysis showed acceptable model fit for the hypothesized two-factor model according to fit indices, as identified for the original version: attention for the patient and attention for the caregiver. Cronbach’s alpha for score in J-IEXPAC CAREGIVERS with 12 items was high (0.92). Spearman’s rank correlation coefficient between overall caregiver satisfaction and J-IEXPAC CAREGIVERS score was 0.71. Family caregivers who experienced home-visit services had significantly (P = 0.001) higher total scores than those who did not. Conclusions This pilot study showed that the J-IEXPAC CAREGIVERS is valid and reliable. This scale can be useful for evaluating quality of integrated care, with focus on family caregivers and patients with chronic conditions in Japan.
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Park, Silvia, Juhee Cho, Jun Ho Jang, Chul Won Jung, and Mi Hwa Heo. "Measurement of Quality of Life and Depression of Spouse Caregivers for Survivors after Hematopoietic Stem Cell Transplantation." Blood 128, no. 22 (December 2, 2016): 4775. http://dx.doi.org/10.1182/blood.v128.22.4775.4775.
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Abstract Introduction: Hematopoietic stem cell transplantation (HSCT) is a quite exhausting process, which encompasses multitude of chemotherapy before HSCT and long term care and surveillance in post transplant period. Caregivers are also exposed to this whole process, and are often the sole provider of physical and emotional support for the patients. Methods: This was a cross-sectional, HSCT survivor-spouse caregiver matching study to determine the caregiver's quality of life (QoL) and depression. From September 2013 to March 2015, a total of 103 HSCT survivor-partner pairs were answered to a set of questionnaire for the assessment of QOL and depression, which were measured by the World Health Organization Quality of Life (WHOQOL)- BREF 26 and Patient Health Questionnaire-9 (PHQ9), respectively. Results: Among a total of 103 pairs, the data from 97 married couples were finally used for the analysis. Mean age of the caregiver participants was 49.7 years (range 30-73) and majority of caregivers were female (n=65, 67%). More than 70% of pairs were assessed with a monthly income of $2,000-4,000 or more, and 55.2% of caregivers responded to have co-morbidities. Mean duration since transplant was 3.2 years, and allogeneic HSCT comprised 68.7% of cases. As a result, overall QoL, psychological health, social relationships and environmental health were not significantly different between survivors and caregivers (p=0.345, 0.424, 0.415, and 0.253) whereas physical QoL was reported to be better in caregivers compared to survivors (p=0.011). Mean depression scale of depression was comparable between survivors and caregivers with mean score of 5.3 and 5.1 (p=0.812) and there was no difference in the proportion of severe depression between the two groups (15.6% in survivors, 13.7% in caregivers) (p=0.270). It was revealed that family income had significantly correlation with caregiver's overall QoL and environmental health (p=0.013, and 0.023), and female gender, co-morbidites and family income were the important factors associated with caregiver's depression (p=0.007, 0.017 and 0.049). Conclusion: The present study identified that there was no significant difference in QoL and the level of depression between HSCT survivors and spouse caregivers. Family income, gender and co-morbidites showed significant association with caregiver's distress. We suggest that psychosocial intervention starting from a clinical attention to both survivors and caregivers is needed, and that social support to families who are financially challenged has to be considered. Disclosures Jang: Kyowa Hakko Kirin Co., Ltd.: Research Funding.
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Smithgall, Cheryl, Sally Mason, Lisa Michels, Christina LiCalsi, and Robert Goerge. "Intergenerational and Interconnected: Mental Health and Weil-Being in Grandparent Caregiver Families." Families in Society: The Journal of Contemporary Social Services 90, no. 2 (April 2009): 167–75. http://dx.doi.org/10.1606/1044-3894.3869.
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Research shows that a substantial number of grandparent caregivers are caring for children with developmental delays or emotional or behavioral problems, and that many caregivers have clinical levels of depression. This study explores grandparent-caregiver families’ mental health needs as well as use of and barriers to accessing mental health services. Interviews with families revealed unmet mental health needs and an interconnectedness between grandchildren's and their grandparent caregivers’ well-being. In the survey component, service providers described problems highly consistent with those reported by grandmothers, including school-related or attention-related concerns among children and depression, stress, and frustration among grandparents. Findings suggest implications for practitioners and policymakers regarding service access, expectations about services, and the fit between clients’ needs and the services available.
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Pereira, M. Graça, Margarida Vilaça, Marta Pereira, Rosário Bacalhau, Sara Monteiro, Bruna Fernandes, Sara Faria, and Gabriela Ferreira. "Validation of the caregiver oncology quality of life questionnaire in Portuguese caregivers of myeloma patients." Palliative and Supportive Care 18, no. 2 (July 18, 2019): 178–85. http://dx.doi.org/10.1017/s1478951519000476.
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AbstractObjectiveCancer diagnosis affects patients, their families, and their caregivers in particular. This study focused on the validation of the CareGiver Oncology Quality of Life (CarGOQoL) questionnaire in Portuguese caregivers of patients with multiple myeloma, from the caregiver's point of view.MethodThis was a cross-sectional study with 146 caregivers of patients with multiple myeloma from outpatient medical oncology and clinical hematology consultations from five hospitals in north and central Portugal. Participants were assessed on quality of life (QoL), psychological morbidity and social support.ResultThe Portuguese version maintains 17 of the original 29 items version, maintaining general coherence and a dimensional structure that is clinically interpretable. Reliability findings indicated good internal consistency for the total scale (0.86) and respective subscales (0.75 to 0.88), which is in agreement with the alpha values from the previous CarGOQoL validation study for the corresponding subscales (0.74 to 0.89) and total scale (0.90).Significance of resultsThe CarGOQoL is a reliable and valid tool for clinical trials and intervention programs to assess QoL in caregivers of myeloma patients. Future studies should validate the adapted version in caregivers of other types of cancer patients including other chronic diseases.
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Fillit, Howard M., Elane M. Gutterman, and Rachelle L. Brooks. "Impact of Donepezil on Caregiving Burden for Patients With Alzheimer's Disease." International Psychogeriatrics 12, no. 3 (September 2000): 389–401. http://dx.doi.org/10.1017/s1041610200006499.
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Comprehensive Alzheimer's disease (AD) treatment should address caregiver well-being. We predicted that caregiver burden would be lower among caregivers of AD patients who received donepezil relative to caregivers of patients not treated with donepezil. A self-administered, nationwide survey of AD caregivers was used to match caregivers of patients treated with donepezil (n = 274) to caregivers of patients not treated with donepezil (n = 274). The Caregiver Burden Scale measured time demands and distress linked to commonly performed caregiving tasks. Respondents were three-quarters female, with an average age of 60 years. Results demonstrated that donepezil caregivers reported significantly lower scores on difficulty of caregiving. This difference remained when statistical controls for multiple patient and caregiver variables were imposed. However, selection factors must be recognized as a possible explanation for differences. The groups reported no difference on the time-demand subscale. In conclusion, better management of AD symptoms through donepezil treatment may reduce the burden of caregiving, providing physicians with a pharmacologic approach to improving quality of life for AD patients and their families.
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Leung, Lai Ching, Kam Wah Chan, and Kin Yuen Tam. "Reconstruction of Masculine Identities Through Caring Practices: The Experiences of Male Caregivers in Hong Kong." Journal of Family Issues 40, no. 6 (January 7, 2019): 764–84. http://dx.doi.org/10.1177/0192513x18823820.
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The purpose of this study was to explore from a gender perspective how masculinities might be reworked into identities of care through men taking on the role of family caregiver. A qualitative method was adopted for this research. Twenty Chinese men in Hong Kong who were the main caregivers in their families were invited for in-depth interviews to understand their views on caring and their experiences as caregivers. We identified four types of male caregiver: (a) conforming caregivers, (b) traditional caregivers, (c) transitional caregivers, and (d) transforming caregivers. Based on our findings, we argue that when men engage in caring, changes can occur in their perceptions of the value of care, their relationships with family members, and their male identities. The involvement of men in caring may lead to social change for men and transform gender relations.
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Gopalan, Geetha, Lindsay A. Bornheimer, Mary Acri, Andrew Winters, Kyle H. O’Brien, and Anil Chacko. "Multiple Family Group Service Delivery Model for Children With Disruptive Behavior Disorders: Impact on Caregiver Stress and Depressive Symptoms." Journal of Emotional and Behavioral Disorders 26, no. 3 (July 10, 2017): 182–92. http://dx.doi.org/10.1177/1063426617717721.
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Disproportionately high rates of caregiver stress and depression are found among poverty-impacted communities, with high levels of caregiver stress and depression putting youth at heightened risk for the onset and perpetuation of disruptive behavior disorders. The purpose of this study was to examine the effects of a behavioral parent training program called the 4Rs and 2Ss for Strengthening Families Program (4R2S) on caregiver stress and depressive symptoms among 320 youth aged 7 to 11 and their families assigned to either the 4R2S or services as usual (SAU) condition. Among caregivers with clinically significant (CS) scores at baseline, 4R2S participants manifested significantly reduced scores on the stress and depressive symptom scores to SAU participants at 6-month follow-up. Findings suggest that 4R2S may reduce caregiver stress and depressive symptoms among those caregivers initially manifesting CS levels of stress or depressive symptoms.
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Singletary, Brandon, Nisha Patel, Andrew Mims, Andrew Smedley, Jacob Swords, Ronan O'Bierne, Melanie S. Morris, Monika Safford, and Martin Heslin. "Gaps in the Postoperative Conversation: A Comprehensive Review of Current Practices and the Unmet Needs of Surgeons, Families, and Waiting Room Personnel." American Surgeon 83, no. 7 (July 2017): 812–20. http://dx.doi.org/10.1177/000313481708300743.
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Perioperative communication between surgeons and caregivers is an important aspect of patient care, with postoperative conversations (POCs) being critical. Literature suggests current communication practices may be suboptimal. Identifying barriers and opportunities could improve patient and caregiver satisfaction and increase surgeon efficiency. This mixed method study included 1) prospective study of all patients undergoing a surgery at an academic medical center between September 2014 and March 2016 and 2) nominal groups of physicians, caregivers, and waiting room personnel (WRP). Nominal groups ranked standard of care themes needing intervention. Multivariate logistic regression estimated the association of surgeon and procedure characteristics with POC practices considering both location and contact method. Data on 15,820 operations showed that surgical specialty (P ≤ 0.0001), inpatient status (P ≤ 0.0001), planned discharge destination (P = 0.0003), patient race (P = 0.02), and caregiver relationship (P ≤ 0.0001) were all significantly associated with receiving a private POC. Nominal group results provided opportunities for improvement: regular updates (caregivers), locating the caregivers postoperation (surgeons), clear communication between caregivers and surgeons (WRP). This study examines the perioperative communication. Surgeons, caregivers, and WRP identified effective communication as a top intervention priority. Managing caregiver expectations, addressing concerns of WRP, and creating an efficient environment for surgeons appear to be critical components to communication.
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Hellerud, Jane Margrete Askeland, and Trine Lise Bakken. "Family and caregivers’ experience of mental illness in migrants with intellectual disability – reflections on practice." Advances in Mental Health and Intellectual Disabilities 13, no. 2 (March 4, 2019): 76–88. http://dx.doi.org/10.1108/amhid-06-2018-0029.
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Purpose The purpose of this paper is to investigate the families’ and professional caregivers’ experience of mental health services for patients in the migrant population with intellectual disability (ID). Design/methodology/approach To highlight this rarely studied topic, the authors chose a qualitative approach, using a semi-structured interview guide. The authors performed a search for relevant articles. Three families of former patients of a specialized psychiatric inpatient unit and 12 professional caregivers were interviewed. The interviews were taped, transcribed and analyzed using a thematic analysis. Findings In total, 17 themes from the families’ answers and 14 themes from the caregivers’ answers were grouped into four main themes each. Two main themes were identical for both groups: perspectives on mental illness and “the Norwegian system.” Additionally, the families were concerned about the impact on the patient and family and coping strategies. The caregivers highlighted patient–caregiver interaction and family–caregiver interaction. Research limitations/implications Further research should include the patients’ opinions based on the findings of this study. Also, studies including larger samples from both specialist services and community services are needed to develop evidence-based services for these patients. Practical implications Proposed adaptations to enable assessment and treatment of mental illness in migrants with ID should be adapted to cultural preferences. The following adaptations are proposed: inclusion of the entire family, awareness of cultural dimensions, information about the health care system, education in mental illness, the use of interpreters and adequate time spent with the families. Originality/value Mental health services for this group are an understudied topic. Clinical experience indicates that professionals struggle when providing services for such patients.
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Gaugler, Joseph E., Bonnie L. Westra, and Robert L. Kane. "Professional discipline and support recommendations for family caregivers of persons with dementia." International Psychogeriatrics 28, no. 6 (January 7, 2016): 1029–40. http://dx.doi.org/10.1017/s1041610215002318.
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ABSTRACTBackground:Family caregivers of persons with dementia often require support services to help ease the challenges of providing care. Although the efficacy of some dementia caregiver interventions seems apparent, evidence indicating which types of protocols can best meet the diverse needs of individual families is not yet available. Because of this gap, families must often turn to professionals for such guidance, but it remains unknown whether professionals from different disciplines are more inclined to recommend particular types of services than others. This study assessed whether recommendations of supportive interventions to hypothetical dementia family caregivers differed by professional discipline.Methods:In a cross-sectional survey design, a convenience sample of 422 dementia care professionals across the USA viewed up to 24 randomly selected, hypothetical scenarios that systematically varied characteristics of persons with dementia and their caregivers. For each scenario, 7 possible intervention recommendations were rated. A total of 6,890 scenarios were rated and served as the unit of analysis.Results:General linear models revealed that discipline was often a stronger predictor of how likely professionals were to recommend dementia caregiver interventions than caregiver, care recipient, or other professional characteristics. Psychotherapists tended to recommend psychoeducation more than other professionals, while those in medicine were more likely to recommend training of the person with dementia and psychotherapy.Conclusions:The heterogeneity in recommendations suggests that the professional source of information influences the types of support families are directed toward. Empirical evidence should inform these professional judgments to better achieve person-centered care for families.
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Salami, Bukola, and Salima Meherali. "One of the family? Familial and professional relationships between migrant live-in caregivers and their employers." International Journal of Migration, Health and Social Care 14, no. 2 (June 11, 2018): 174–85. http://dx.doi.org/10.1108/ijmhsc-09-2016-0034.
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PurposeMany families in the developed world hire live-in caregivers to meet their childcare and elder care needs. Given the spatial arrangements – i.e., that the caregiver lives with her employer – relationships between employers and live-in caregivers can develop into family-like relationships. The purpose of this paper is to draw on data from two Canadian studies to examine the relationships between migrant live-in caregivers and their employers.Design/methodology/approachThe first study focused on the live-in caregivers in Canada. Semi-structured interviews were conducted with 15 Filipina nurses who migrated to Canada through the Live-in Caregiver Program. The second study was a pilot descriptive study that included interviews of recruiter groups and employers of live-in caregivers. Data were thematically analyzed, aided by NVivo software.FindingsThe studies indicate that some live-in caregivers prefer to be treated as one of the family, while others prefer to have a strictly professional employer/employee relationship. Their employers are similarly divided. The authors identify reciprocity and respect as important ingredients for healthy relationships between live-in caregivers and their employers. Without these key ingredients, relationships between employers and live-in caregivers can be exploitative, especially given the unequal power inherent in the relationship.Research limitations/implicationsFurther studies are needed to better understand how these relationships evolve over time and in space.Practical implicationsThere is a need to create policies to further prevent exploitation of live-in caregivers within an unfavorable employee or familial relationship.Originality/valueThis study provides useful insight into the development of knowledge on relationships between live-in caregivers and employers.
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Fadilah, Nikmatul, and Loetfia Dwi Rahariyani. "The Impact of Independent of Activity Daily Living among Stroke Patients on Caregivers Burden." Jurnal Ners 14, no. 3 (January 1, 2020): 188. http://dx.doi.org/10.20473/jn.v14i3.17047.
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Introduction: Weakness among stroke patients causes obstacles when fulfilling their activities in daily living (ADL). This condition also has an impact on the caregivers who provide daily care at home. The purpose of this study was to analyze the effect of independent ADL among the stroke patients on caregiver burden.Methods: The study used an analytical design through a cross-sectional approach. The variables included independent ADL and caregiver burden. A sample of 120 caregivers was taken from 2 community health centers in Surabaya through simple random sampling. The instruments used were Zarit Burden's Interview Schedule and the Katz Index of Independent for ADL. Regression ordinal was used to analyze the influence of independent ADL among stroke patients on caregiver burden.Results: The results showed that the caregiver who take care of stroke patients with severe functional impairment will feel burdened 3 times more than no burden. Post-stroke care at home through a rehabilitation program plays an important role in improving the condition of patients and their families at home, especially the caregivers.Conclusion: Nurses in a community health center through the family health care pathway provide comprehensive bio-psycho-socio-spiritual care in the rehabilitation period as expected. They are expected to improve and maintain the fulfillment of human needs comprehensively for stroke patients and their caregivers, so the quality of life of stroke patients, caregivers and their families remains optimal.
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Hong, Jenny, Annalijn Conklin, Nick Dragojlovic, Alison Elliott, Jan Friedman, and Larry Lynd. "PP48 Caregiver Perceptions And Experiences Of Diagnostic Genome-Wide Sequencing." International Journal of Technology Assessment in Health Care 34, S1 (2018): 84. http://dx.doi.org/10.1017/s0266462318002106.
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Introduction:The objective of this qualitative analysis was to explore caregiver perceptions and experiences of receiving or not receiving a genetic diagnosis following genome-wide sequencing (GWS) in children with suspected genetic disorders.Methods:One caregiver for each child completed an online survey two weeks after enrolling in the Clinical Assessment of the Utility of Sequencing and Evaluation as a Service (CAUSES) study, beginning in January 2016, and again about six months after receiving the GWS results. The survey covered the caregivers' experiences and quality of life and children's healthcare resource utilization, and provided open-ended questions for comments. The follow-up survey was completed by twenty families who had received a diagnosis with their GWS results and by twenty-two families who had not received a diagnosis. A thematic analysis of the free-text comments from both groups was performed using NVivo 11.4.2.Results:Caregivers from both groups expressed similar experiences of negative socioeconomic effects of caregiving, particularly related to employment and time burden. Caregivers who did not receive a diagnosis with the GWS results were generally hopeful of receiving a diagnosis in the future and reported expectations of a positive benefit from receiving a diagnosis, both in terms of access to additional resources and of positive psychological effects. The absence of a diagnosis was a source of anxiety for many caregivers. By contrast, caregivers who had received a diagnosis reported positive, neutral, and negative psychological effects from the knowledge gained; no participants commented on the consequences for access to additional services or other socioeconomic effects.Conclusions:Our findings suggest that caregivers may have high expectations for what a diagnosis can provide to them and their families, which may not be fully met once a diagnosis is obtained. The study underpins the importance of patient-centered communication of genomic testing results so that families can set realistic expectations of what having a diagnosis will achieve.
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Lin, Wei-Chen, Chia-Fen Tsai, Shuu-Jiun Wang, Jeng-Ping Hwang, and Jong-Ling Fuh. "Comparison of the burdens of family caregivers and foreign paid caregivers of the individuals with dementia." International Psychogeriatrics 24, no. 12 (August 3, 2012): 1953–61. http://dx.doi.org/10.1017/s1041610212001354.
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ABSTRACTBackground: The caregiver burden on foreign paid caregivers (FPCs) is currently not well understood. This study identified predictors and differences in caregiver burden between FPCs and family caregivers who provided care for patients with dementia.Methods: We recruited 489 patients with dementia (diagnosed according to the Diagnostic and Statistical Manual of Mental Disorders, 4th edition) and used the Neuropsychiatric Inventory (NPI) and Clinical Dementia Rating (CDR) Scale to assess their neuropsychiatric behavioral problems and severity of dementia. All caregivers [FPCs (n = 42) and family caregivers with (n = 42) and without (n = 447) FPCs] completed three questionnaires: the Zarit Burden Interview (ZBI), the Center for Epidemiological Studies–Depression Scale (CES-D), and caregivers’ knowledge of dementia (KD). To understand caregiver burden, we analyzed the correlations between ZBI and other variables and investigated the differences between family caregivers and FPCs.Results: NPI and CDR scores were higher among patients assisted by FPCs than among those whose families did not employ FPCs. Burdens were greater among family caregivers assisted by FPCs than among FPCs and family caregivers who were not assisted by FPCs. Family caregivers had greater knowledge of dementia than did FPCs. For family caregivers, CES-D scores (Spearman's r = 0.650; p < 0.01) and patients’ NPI scores (Spearman's r = 0.471; p < 0.01) were correlated with caregiver burden. For FPCs, only CES-D scores (Spearman's r = 0.511; p < 0.01) were correlated with caregiver burden. A linear regression model showed that CES-D scores contributed most to caregiver burden in all groups [β = 0.560 (family caregivers without FPCs), 0.546 (family caregivers with FPCs), and 0.583 (FPCs); p < 0.005].Conclusion: Both family caregivers and FPCs need emotional support. Adequate treatment to reduce the neuropsychiatric symptoms of patients with dementia might reduce the burden on family caregivers.
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Cycyk, Lauren M., Heather W. Moore, Stephanie De Anda, Lidia Huerta, Shaundra Méndez, Christina Patton, and Camille Bourret. "Adaptation of a Caregiver-Implemented Naturalistic Communication Intervention for Spanish-Speaking Families of Mexican Immigrant Descent: A Promising Start." American Journal of Speech-Language Pathology 29, no. 3 (August 4, 2020): 1260–82. http://dx.doi.org/10.1044/2020_ajslp-19-00142.
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Purpose Caregiver-implemented naturalistic communication interventions (CI-NCIs) support the communication abilities of young children with language disorders and enhance the communication behaviors of their caregivers. Yet, few CI-NCIs have been adapted and tested for feasibility with families who speak Spanish at home. This study addresses this gap in the literature by examining the social validity and preliminary outcomes of an adapted CI-NCI program with families who identified as Mexican immigrants and spoke Spanish. Method A multiphase cultural adaptation process enhanced the Language and Play Every Day program for Spanish-speaking Mexican immigrant families in the United States. Six families, including eight caregivers and eight toddlers, participated. Caregivers received coaching on the use of language-facilitating strategies within existing home routines. Multiple measures of the social validity of the intervention's goals, procedures, and outcomes were collected. Changes in caregivers' reported confidence, knowledge, and use of language-facilitating strategies and children's receptive and expressive communication were examined to determine preliminary outcomes. Results Overall, caregivers perceived many of the intervention's goals, procedures, and outcomes as socially valid and specified aspects of the intervention needing improvement. Caregivers and children showed modest but potentially clinically meaningful gains in their communication skills following the intervention despite wide individual variability. Conclusions Given some recommendations to further adapt the intervention, this CI-NCI appears to be feasible for supporting the communication development of children of Spanish-speaking Mexican immigrant descent. Thus, future research on the efficacy of the intervention is warranted. Supplemental Material https://doi.org/10.23641/asha.12269081
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Stern, Anita, Ruta Valaitis, Robin Weir, and Alejandro R. Jadad. "Use of home telehealth in palliative cancer care: a case study." Journal of Telemedicine and Telecare 18, no. 5 (July 2012): 297–300. http://dx.doi.org/10.1258/jtt.2012.111201.
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We conducted a mixed-methods case study to explore the perceptions of family caregivers and palliative cancer patients of home telehealth, and their experience with it. The intervention in the randomized controlled trial from which study participants were selected consisted of specialist nurses available 24 hours per day who communicated with patients and families using videophones, with optional remote monitoring. Qualitative data were collected from interviews with five patient/caregiver dyads and seven bereaved family caregivers, direct observation and nursing documentation. Quantitative data were collected from computerized nursing documentation and analyzed for patterns of use. During the study there were 255 contacts, including videophone, telephone or face-to-face visits, between tele-nurses and families. Overall the patients, family caregivers and tele-nurses felt that home telehealth enabled family caregiving, citing increased access to care, and patient and family caregiver reassurance. Pain management was the most common reason for initiating contact with the nurse, followed by emotional support. Concerns included lack of integration of services, inappropriate timing of the intervention and technical problems. The case study confirmed the importance of timely and accessible care for a group of clinically vulnerable, dying cancer patients and their family caregivers.
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Tadros, Eman, Kerrie Fanning, Sarah Jensen, and Julie Poehlmann-Tynan. "Coparenting and Mental Health in Families with Jailed Parents." International Journal of Environmental Research and Public Health 18, no. 16 (August 18, 2021): 8705. http://dx.doi.org/10.3390/ijerph18168705.
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The number of families affected by parental incarceration in the United States has increased dramatically in the past three decades, with primarily negative implications for adult mental health and child and family well-being. Despite research documenting increased strain on coparenting relationships, less is known regarding the relation between adult mental health and coparenting quality. This study investigated coparenting in families with young children currently experiencing parental incarceration. In a diverse sample of 86 jailed parent–caregiver dyads (n = 172), this analysis of a short-term longitudinal study examined the links among jailed parents’ and children’s at-home caregivers’ externalizing mental health symptoms and perceived coparenting alliance quality using the Actor–Partner Interdependence Model. Analyses using structural equation modeling revealed a medium sized negative partner effect for externalizing behaviors on coparenting alliance for jailed parents, wherein caregivers increased externalizing symptoms related to jailed parents’ lower reported coparenting quality. Caregiver–partner effects and both actor effects resulted in small effects. These findings highlight the roles of mental health and coparenting relationship quality when a parent is incarcerated and contribute to the existing literature on incarcerated coparenting, with implications for theory and practice.
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Uphold, Heatherlun, Amy Peterson, Felicity W. K. Harper, Jennifer Fox, Tanina Foster, Sean Phipps, Jeffrey Warren Taub, Terrance Lynn Albrecht, and Louis Penner. "Basic needs of pediatric oncology patients, families, and their psychosocial adjustment." Journal of Clinical Oncology 31, no. 15_suppl (May 20, 2013): e20646-e20646. http://dx.doi.org/10.1200/jco.2013.31.15_suppl.e20646.
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e20646 Background: Children are surviving cancer at increasing rates, but dealing with pediatric cancer creates substantial need for services among the families of patients. This study examined the fiscal/material/social needs of families with children in treatment, the relationship between the extent of these needs, and the psychosocial adjustment of primary caregivers. Methods: Participants included 105 pediatric cancer patients (ages 3-12), receiving outpatient cancer treatments at two large children’s hospitals, and their adult caregivers. About one year after treatment began, caregivers completed a questionnaire assessing their fiscal/material/social needs and whether the hospital offered assistance. Caregivers also completed several measures of psychosocial adjustment: satisfaction with life (Diener, 1985), perceived stress (Cohen, 1994), psychiatric symptoms (Derogatis, 1983), and post-traumatic stress symptoms (Weiss, 1996). This non-clinical study is still accruing patients, but it has reached a sample size that is large enough (90% of final sample) to justify data analysis. Results: The top 5 identified needs were: social work services, play activities during treatment, help with insurance to cover their child’s medical care, educational activities to help their child cope, and help obtaining cancer-related medical services. An analysis of the demographic correlates of these needs showed the total number of needs was significantly and negatively correlated with income, and Black families reported more needs than White families; there were no other significant demographic correlates. Total number of needs was significantly associated with caregivers’ psychosocial adjustment. Specifically, total number of needs was negatively correlated with life satisfaction, and positively associated with: caregiver perceived stress, depression, and symptoms of post-traumatic stress. Conclusions: Caregivers of pediatric cancer patients have substantial needs for basic services and the extent of these needs is associated with their psychosocial adjustment. Unmet needs may be a risk factor for patients and families. Programs that address these needs may benefit the adult caregivers and their children.
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Toledano-Toledano, Filiberto, David Luna, José Moral de la Rubia, Silvia Martínez Valverde, Carlos Alberto Bermúdez Morón, Marcela Salazar García, and Mario José Vasquez Pauca. "Psychosocial Factors Predicting Resilience in Family Caregivers of Children with Cancer: A Cross-Sectional Study." International Journal of Environmental Research and Public Health 18, no. 2 (January 17, 2021): 748. http://dx.doi.org/10.3390/ijerph18020748.
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Chronic diseases in childhood can affect the physical and mental health of patients and their families. The objective of this study was to identify the sociodemographic and psychosocial factors that predict resilience in family caregivers of children with cancer and to define whether there are differences in the levels of resilience derived from these sociodemographic variables. Three hundred and thirty family caregivers of children with cancer, with an average age of 32.6 years were interviewed. The caregivers responded to a battery of tests that included a questionnaire of sociodemographic variables, the Measuring Scale of Resilience, the Beck Depression Inventory, the Inventory of Quality of Life, the Beck Anxiety Inventory, an interview of caregiver burden and the World Health Organization Well-Being Index. The main findings indicate that family caregivers of children with cancer reported high levels of resilience, which were associated positively with quality of life, psychological well-being and years of study and associated negatively with depression, anxiety and caregiver burden. The variables that predicted resilience in families of children with cancer were quality of life, psychological well-being, depression and number of children. Family caregivers who were married and Catholic showed higher resilience scores. We conclude that being a caregiver in a family with children with cancer is associated with symptoms of anxiety and with depressive episodes. These issues can be overcome through family strength, well-being, quality of life and positive adaptation processes and mobilization of family resources.
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Lee, Li-Ching, Jonathan B. Kotch, and Christine E. Cox. "Child Maltreatment in Families Experiencing Domestic Violence." Violence and Victims 19, no. 5 (October 2004): 573–91. http://dx.doi.org/10.1891/vivi.19.5.573.63682.
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This study examined the association between physical domestic violence (PDV) and reported child maltreatment in a cohort of children at risk for maltreatment. Participants were 219 6- to 7-year-old children and their caregivers. PDV was measured by combining caregivers’ self-reports and children’s reports, while child maltreatment was based on state Division of Social Services Central Registry records. Among 219 child-caregiver pairs studied, 42 (19.2%) had at least one maltreatment report in the 2 years following the interviews. PDV consistently predicted child maltreatment, with adjusted odds ratios ranging from 2.96 to 3.46. In addition, we investigated interactions between PDV and other predictors of child maltreatment. Among Aid to Families with Dependent Children (AFDC) participants, PDV was highly associated with child maltreatment. However, this pattern was not observed among subjects who did not have AFDC. There is an increased incidence of child maltreatment reports in families experiencing PDV. AFDC participation intensified the probability of child maltreatment in the presence of PDV. Findings also suggest that in households experiencing PDV, social supports may protect children from maltreatment.
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Brannan, Ana María, Eileen M. Brennan, Claudia Sellmaier, and Julie M. Rosenzweig. "Employed Parents of Children Receiving Mental Health Services: Caregiver Strain and Work–Life Integration." Families in Society: The Journal of Contemporary Social Services 99, no. 1 (January 2018): 29–44. http://dx.doi.org/10.1177/1044389418756375.
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Applying conservation of resources theory, we examined employment engagement (i.e., months of employment, hours worked per week, days of work missed due to the child’s challenges) among caregivers of children and youth entering community-based mental health service systems. The sample included 3,569 caregivers who were employed at some point in the previous 6 months. Variables associated with employment included family interactions, number of children in the household, caregiver age and gender, and caregiver race and ethnicity. The findings suggest that caregivers’ appraisals of their caregiving experiences were stronger predictors of work engagement than was child symptom severity. We concluded that supporting families as they care for children with emotional and behavioral disorders could reduce caregiver strain, thereby improving employment outcomes.
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Smith, Erin R., Paul B. Perrin, Carmen M. Tyler, Sarah K. Lageman, and Teresita Villaseñor. "Parkinson’s Symptoms and Caregiver Burden and Mental Health: A Cross-Cultural Mediational Model." Behavioural Neurology 2019 (December 1, 2019): 1–10. http://dx.doi.org/10.1155/2019/1396572.
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Informal caregivers are critical in the care of individuals with Parkinson’s disease (PD) and spend substantial time providing care, which may be associated with negative caregiver outcomes such as burden and mental health issues. Although research in the United States and Europe has generally supported these relations, there is very limited research on PD caregiving in Latin America. The current study examined the following connections in a sample of PD caregivers from the United States (N=105) and Mexico (N=148): (a) PD-related impairments (motor and nonmotor symptoms) and caregiver burden, (b) caregiver burden and caregiver mental health, and (c) PD-related impairments and mental health through caregiver burden. Study results uncovered significant relations among PD-related impairments, caregiver burden, and caregiver mental health. Further, caregiver burden fully mediated the relation between PD-related impairments and caregiver mental health at both study sites. Findings highlight a number of important intervention targets for caregivers and families, including caregiver burden and mental health.
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Soliman, Hussein H., and Manal M. Abd Almotgly. "Psychosocial Profile of People with AIDS and Their Caregivers in Egypt." Psychological Reports 108, no. 3 (June 2011): 883–92. http://dx.doi.org/10.2466/02.13.17.pr0.108.3.883-892.
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Caring for individuals with AIDS in developing countries represents a major crisis to families and natural caregivers. This study presents the psychosocial profiles of people with AIDS and their caregivers in Egypt to assess the effects of HIV/AIDS on patients, their caregivers, and the factors that influence caregiving and support. Various stressors and challenges for patients as well as hardships the caregiver faces were explored. The literature documents difficulties such as inadequate health care services, lack of resources, and stigma that patients experience in developing countries. Findings indicate an association between the psychosocial effects of AIDS on patients and their caregivers.
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Darlami, Kamala, Reshmi Ponnose, and Pradap Jose. "CAREGIVER'S STRESS OF PSYCHIATRIC PATIENTS." Journal of Universal College of Medical Sciences 3, no. 2 (January 11, 2016): 39–43. http://dx.doi.org/10.3126/jucms.v3i2.14290.
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INTRODUCTION: Psychiatric disorders are as old as human life. The prevalence of psychiatric disorders and their undesired personal, familial and social effects have increased simultaneously with population growth and urbanity. Limited psychiatric health care services coupled with increased psychiatric disorders led their families to play a critical role in taking care of the patients and they have to be considered as a main source of patients' caregivers. Long term care to psychiatric patients' increases caregivers' burden and decreases their mental health status. This may result in increasing psychiatric stress of caregivers and decreased patient care. MATERIAL AND METHODS: A descriptive research design was adopted to assess the caregiver's stress of psychiatric patients and coping mechanisms in this study. Fifty care givers of the psychiatric patients were selected through purposive sampling technique from inpatient and outpatient units of Universal College of Medical Sciences, Teaching Hospital. Modified and combined version of General Health Questionnaire-12 and Kingston caregiver scale, Cope scale and demographic performa were used to interview the samples. Collected data was analysed using descriptive and inferential statistics. Sociodemographic data was analyzed using frequency and percentage. Level of stress and coping was analyzed by computing frequency, percentage, mean, median, and standard deviation. The association between the caregiver's stress with sociodemographic variables was computed using chi-square test. RESULT: Result related to stress level of respondents revealed that majority of the respondents (86%) were at moderate stress, followed by 14% with severe stress. Study findings showed that caregivers were stressed with care giving, family and financial issues. In relation to coping strategies, 68% of respondent used active coping measures whereas 32% adopted passive coping methods. Majority of the respondents used social support, positive reinterpretation and religious coping strategies to overcome the stress. Caregiver's stress compared with sociodemographic variables showed a significant association between religion, ethnicity, education, marital status, onset of illness, type of illness, type of patient and relation with patient. CONCLUSION: The present study revealed that all of the respondents were under stress and most of them used active coping measures to manage their stress. The study has important implications for service delivery and clinical practice. Health care personnel should be observant of psychological problems of caregivers and if subjective complaints or functional impairment are present, evaluation and therapeutic interventions should be suggested. Information regarding support and practical assistance should also be offered to families of psychiatric patients.Journal of Universal College of Medical Sciences (2015) Vol.03 No.02 Issue 10 Page: 39-43
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Burke, Meghan M., Thomas Fish, and Kathy Lawton. "A Comparative Analysis of Adult Siblings' Perceptions Toward Caregiving." Intellectual and Developmental Disabilities 53, no. 2 (April 1, 2015): 143–57. http://dx.doi.org/10.1352/1934-9556-53.2.143.
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Abstract Siblings of individuals with intellectual and developmental disabilities (IDD) are likely to become caregivers for their brothers and sisters. The expectations of and experiences with caregiving, however, may be different. In this study, using focus groups, we compared the perspectives of siblings who were current caregivers (n = 25) to siblings who anticipated being caregivers (n = 17). Responses were compared and contrasted across four areas: caregiving responsibilities, rewards, challenges, and opinions toward being paid as a caregiver. Both caregiver groups were knowledgeable about and invested in their brothers and sisters. Also, they both reported that they enjoyed bonding with their brothers and sisters. Challenges, for current caregivers, related to understanding and navigating the service system. In contrast, anticipated caregivers were concerned about planning for the future. Mixed viewpoints were expressed about receiving pay for providing care although a greater number of current caregivers were receptive to it as a means to supporting their own families.
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Shune, Samantha E., and Ashwini Namasivayam-MacDonald. "Dysphagia-Related Caregiver Burden: Moving Beyond the Physiological Impairment." Perspectives of the ASHA Special Interest Groups 5, no. 5 (October 23, 2020): 1282–89. http://dx.doi.org/10.1044/2020_persp-20-00067.
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Purpose The biopsychosocial ramifications of dysphagia are widespread. However, its influence on informal caregivers and families is often overlooked. Ultimately, the health and well-being of an entire family is central to care provision. This tutorial introduces readers to the current literature on dysphagia-related caregiver burden and third-party disability, illustrates the consequences of such burden on both caregivers and patients, and suggests strategies for better supporting patients' informal caregivers. Conclusions It is essential that speech-language pathologists recognize that the consequences of dysphagia are not limited to the impairment itself and acknowledge dysphagia's substantial impact on the entire family system. More general health care literature suggests that asking caregivers individual questions, modifying the language used to talk with them, providing them with targeted education and resources, and organizing support groups may all be beneficial for increased perceived support and self-efficacy. Ultimately, in order to best meet the needs of our patients with dysphagia, we must also better meet the needs of their families and other informal caregivers.
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Liken, Michelle A. "Caregivers in Crisis: Moving a Relative with Alzheimer's to Assisted Living." Clinical Nursing Research 10, no. 1 (February 1, 2001): 52–68. http://dx.doi.org/10.1177/c10n1r6.
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The experience of moving a relative with Alzheimer's disease (AD) to an assisted living facility (ALF) was examined in this secondary data analysis of 20 interviews with family caregivers. Crisis theory was used as guiding framework for the analysis. Findings indicate that all elements of a crisis were evident among caregivers in the process of moving their relatives to ALFs. Dangerous behaviors resulting from the relative' s cognitive decline led to caregiver fear and anxiety, which served as crisis precipitants. Perceived lack of family support in conjunction with physical and psychological exhaustion were crisis mediators. These factors, along with the caregiver's failed attempts to keep their relative at home, caused the crisis process to move toward the outcome of ALF placement. A better understanding of the crises that surround placement issues will assist nurses in planning interventions for the growing number of families faced with this issue.