Caregivers Of Survivors Research Articles

Behavioral Health Support Group Preferences for Caregivers of Survivors of Traumatic Brain Injury

To determine topic and format preferences for a behavioral health support group targeting caregivers of community-dwelling traumatic brain injury (TBI) survivors.

Survivor and Caregiver Expectations and Preferences Regarding Lung Cancer Treatment.

Treatment success in lung cancer is no longer restricted to objective measures of disease-specific outcomes and overall survival alone but now incorporates treatment morbidity and subjective quality of life (QoL). This study reports how lung cancer patients, survivors, and caregivers define treatment success and prioritize treatment decisions. An online survey with both ranking and free-response questions was administered among lung cancer survivors and caregivers. Responses were used to evaluate treatment priorities, perceptions of treatment success based on Eastern Cooperative Oncology Group (ECOG) Performance Status, and troublesomeness of treatment-related toxicities. Among 61 respondents (29 lung cancer survivors, 28 caregivers of survivors, and 4 who were both survivors and caregivers), cancer cure was the highest priority when making treatment decisions for 74.5% of respondents, with QoL during and after treatment ranking second and third. Seventy percent of respondents felt that treatment morbidity resulting in complete dependence on others and spending the entire day confined to bed or chair would represent unsuccessful treatment. Requiring oxygen use was ranked as a very or extremely troublesome treatment toxicity by 64%, followed by shortness of breath (62%), fatigue (49%), chronic cough (34%), and appetite loss (30%). Even with remission, a 3- to 7-day hospital admission for pneumonia during treatment was deemed an unsuccessful outcome by 30%. This study highlights the importance of physicians discussing in detail with their lung cancer patients their desires and goals. Accounting for factors like expected performance status following treatment, troublesomeness of treatment toxicities, and hospitalization rates may help guide treatment decisions.

Effectiveness and cost-effectiveness of a virtual multidisciplinary stroke care clinic for community-dwelling stroke survivors and caregivers: a randomised controlled trial protocol

IntroductionThe virtual multidisciplinary stroke care clinic (VMSCC) is the first nurse-led clinic developed to offer support to community-dwelling stroke survivors and caregivers, and to promote poststroke recovery. This two-arm randomised...

Cognitively-Based Compassion Training versus cancer health education to improve health-related quality of life in survivors of solid tumor cancers and their informal caregivers: study protocol for a randomized controlled pilot trial

BackgroundCancer survivors and their informal caregivers (family members, close friends) often experience significant impairments in health-related quality of life (HRQOL), including disruptions in psychological, physical, social, and spiritual well-being both during and after primary cancer treatment. The purpose of this in-progress pilot trial is to determine acceptability and preliminary efficacy (as reflected by effect sizes) of CBCT® (Cognitively-Based Compassion Training) compared with a cancer health education (CHE) attention control to improve the primary outcome of depressive symptoms and secondary outcomes of other HRQOL domains (e.g., anxiety, fatigue), biomarkers of inflammation and diurnal cortisol rhythm, and healthcare utilization-related outcomes in both cancer survivors and informal caregivers.MethodsForty dyads consisting of solid tumor survivors who have completed primary treatments (chemotherapy, radiation, surgery) and their informal caregivers, with at least one dyad member with ≥ mild depressive symptoms or anxiety, will be recruited from Tucson, Arizona, USA. Survivor-caregiver dyads will be randomized together to complete either CBCT or CHE. CBCT is a manualized, 8-week, group meditation-based intervention that starts with attention and mindfulness and builds to contemplative practices aimed at cultivating compassion to the self and others. The goal of CBCT is to challenge unexamined assumptions about feelings and behaviors, with a focus on generating spontaneous self-compassion and increased empathic responsiveness and compassion for others. CHE is an 8-week, manualized group intervention that provides cancer-specific education on various topics (e.g., cancer advocacy, survivorship wellness). Patient-reported HRQOL outcomes will be assessed before, immediately after (week 9), and 1 month after CBCT or CHE (week 13). At the same time points, stress-related biomarkers of inflammation (e.g., plasma interleukin-6) and saliva cortisol relevant for survivor and informal caregiver wellness and healthcare utilization will be measured.DiscussionIf CBCT shows acceptability, a larger trial will be warranted and appropriately powered to formally test the efficacy of this dyadic intervention. Interventions such as CBCT directed toward both survivors and caregivers may eventually fill a gap in supportive oncology care programs to improve HRQOL and healthcare utilization in both dyad members.Trial registrationClinicaltrials.gov, NCT03459781. Prospectively registered on 9 March 2018.

The perceived burden of care among caregivers of survivors of cerebrovascular accident following discharge from a private rehabilitation unit

INTRODUCTION: The transition between inpatient rehabilitation and discharge of survivors of stroke from private rehabilitation services in South Africa is often challenging. After the stroke survivor is discharged, caregivers have an important role as an extension of rehabilitation, although the occupation of caregiving is often unplanned. This study investigated the factors associated with the burden of care experienced by patients' caregivers. METHODS: A quantitative descriptive study was conducted with 63 patients and 63 caregivers, using a consecutive, non-randomised sampling method. Patients' Functional Independence Measure (FIM) scores upon discharge were obtained. Telephonic interviews were conducted with the caregivers two months after the patients' discharge, using the Modified Caregiver Strain Index (MCSI) and a demographic data questionnaire to obtain their perceived burden of care. RESULTS: Patients' median FIM score at discharge was 86, indicating that they needed minimal assistance. After discharge, caregivers experienced minimal to moderate strain (burden of care) according to the MCSI score. The associated factors that were identified included financial, physical, psychological and social aspects, of which financial strain was encountered most regularly. Caregivers also seemed to have unbalanced occupational profiles. CONCLUSIONS: Better caregiver training and support should be provided by private rehabilitation services for better integration of stroke survivors into the community. Key words: Cerebrovascular accident; stroke; caregivers; burden of care; private inpatient rehabilitation

A dyadic analysis of loneliness and health-related quality of life in Latinas with breast cancer and their informal caregivers

Objective: The primary aim of this investigation is to provide a novel dyadic test of a model of loneliness and health-related quality of life (HRQoL) in a sample of Latinas with breast cancer and their informal caregivers.Design: At baseline, dyads completed measures of loneliness and HRQoL. At a 3-month follow-up, they returned to complete the HRQoL measure. Associations were tested with the Actor–Partner Interdependence Model.Sample: About 234 Latinas with breast cancer diagnosed within the past year and their informal caregivers participated in the investigation.Findings: Loneliness was concurrently and negatively associated with HRQoL at baseline for both survivors and caregivers. Survivors’ baseline loneliness, controlling for their baseline HRQoL, negatively predicted their HRQoL at 3 months. Survivors’ HRQoL at baseline also predicted caregivers’ HRQoL at 3 months.Conclusion: Loneliness is a risk factor for declines in HRQoL among cancer survivors. Their caregivers are also at risk for degraded HRQoL when the survivor experiences compromised HRQoL. Loneliness complicates the HRQoL of the cancer survivor–caregiver dyad.

Information Needs Regarding Cognitive Late Effects of Caregivers of Central Nervous System Tumor Survivors.

Pediatric central nervous system (CNS) tumor survivors are at risk for experiencing cognitive late effects (CLEs). Caregivers of survivors may be unaware of these changes or receive untimely information regarding CLEs. Conversely, health care providers (HCPs) may face barriers to providing education. This study aims to (a) understand the knowledge and resource gap for caregivers regarding CLEs and (b) explore how HCPs currently provide education. Caregivers and HCPs were both interviewed. Qualitative analysis was performed using emergent coding. Fifteen caregivers and eight HCPs participated. Caregivers generally felt confident in assisting their survivor but experienced "information overload" during initial diagnosis and treatment. HCPs reported difficulties in determining appropriate timing for education and perceived that caregivers typically lack understanding of CLEs. Caregivers should be aware of and understand a survivor's risk for CLEs to help survivors manage changes. With increasing survival rates of pediatric CNS tumor patients, HCPs must be prepared to provide appropriate education and referrals regarding CLEs for long-term care.

Studi Deskriptif Beban Caregiver Insan Pasca Stroke Di Rumah Sakit Panti Wilasa dr. Cipto Semarang

Recovery of patients will be greatly assisted if the family provides encouragement, showing confidence in the improvement of the patient and allows the patient to perform a lot of things to do and live as independent as possible. Stroke is a syndrome neurologists who pose the greatest threat and can cause disability in human life, the handling is the acute stage and the rehabilitation, the experience of caregiving associated with response multidimensional to the pressures of physical, psychological, emotional, social and financial so that the rehabilitation process at home will give the burden on the caregiver. This study aimed to knowing descriptive study on caregiver burden of stroke survivor in Semarang. The research methodology using descriptive correlation with cross sectional approach. Research sample is 30 stroke survivor caregiver who healthy control on hospitalization and was hospitalized. Research analysis using chi square test (5% significance). The results showed that dominant caregiver are feel burden (63%) with the position. Perceived caregiver burden is multidimensional stress are evident in a caregiver. Keywords: Load, caregiver, post-stroke human

Relationships between supportive care needs and perceived burden in breast cancer survivor-caregiver dyads.

While burden in cancer caregivers is high and associated with poor outcomes, little is known about significance of specific supportive care needs' domains in determining survivors' or caregivers' perceived caregiver burden. This cross-sectional study explored which domains of survivor- and caregiver-reported supportive care needs were most associated with survivor- and caregiver-reported caregiver burden, in breast cancer survivor-caregiver dyads. Cancer survivors (N=55) and their caregivers (N=44) completed measures of supportive care needs, anxiety, depression, functional well-being and perceived caregiver burden. Correlation and linear regression analyses were used to determine relative significance of survivor and caregiver supportive care needs in accounting for variance in survivor and caregiver perceptions of burden. Higher survivor-perceived caregiver burden and higher caregiver-perceived difficulty of caregiving were associated with higher levels of survivor and caregiver supportive care needs. Survivors' psychological needs uniquely contributed to survivors' self-perceived burden, and survivors' sexual needs and caregivers' work and social needs uniquely contributed to caregivers' perceived difficulty of caregiving. Caregiver's perceived time spent caregiving was associated with access to services needs but not other needs. Survivor and caregiver supportive care needs and burden appear interdependent. Longitudinal research with larger samples is warranted to examine these relationships.

Survivor Caregivers and Child Survivors: Rebuilding Lives and the Home in the Postwar Period

Survivor Caregivers and Child Survivors: Rebuilding Lives and the Home in the Postwar Period

Long-term quality of life of caregivers of cardiac arrest survivors and the impact of witnessing a cardiac event of a close relative

BackgroundThe incidence of cardiac arrest is high, with a poor survival rate of 8–14%. Currently, only limited evidence is available about long-term consequences of cardiac arrest on quality of life of caregivers. AimsFirst, to determine the level of daily functioning and quality of life in caregivers of cardiac arrest survivors two years after the cardiac arrest. Second, to study the long-term impact of witnessing the event of a cardiac arrest. MethodsA longitudinal cohort study including caregivers of cardiac arrest survivors. Participants received a questionnaire at home. Outcome variables were instrumental daily activities(FAI), emotional functioning(HADS), fatigue(FSS), caregiver strain(CSI), impact of event(IES), and quality of life(SF36). Results57 caregivers (89% female, age 56,9 ± 12 years) participated. Two years after the cardiac arrest, quality of life of caregivers equals that of the general population, although almost 30% still scored high on the Impact of Events Scale. Mean IES-, FSS-, CSI and FAI-scores were increased as compared to the general population (P < 0.001). Two years after the cardiac arrest, caregivers that witnessed the resuscitation (IES = 23.6 ± 14.9) still experienced significantly more trauma related stress than caregivers that did not witness the resuscitation (11.9 ± 12.5; p < 0.01). ConclusionsTwo years after the cardiac arrest, quality of life of caregivers is quite good, but almost one third of the caregivers still experience a high level of trauma-related stress, especially in those that witnessed the resuscitation. Future research will have to focus on the effectiveness of support programs for caregivers of survivors of cardiac arrest.

Interventions for stroke survivor caregivers: a systematic reviewIntervenciones para los cuidadores de los sobrevivientes de un accidente cerebrovascular: revisión sistemática

RESUMOObjetivoSintetizar e criticar a produção científica sobre as intervenções desenvolvidas para reverter a sobrecarga de cuidado e os fatores associados em cuidadores de sobreviventes de acidente vascular cerebral (AVC).MétodoRevisão sistemática desenvolvida nas bases de dados PubMed e SciELO, Portal CAPES e Biblioteca Virtual em Saúde, utilizando as palavras-chave Stroke AND Caregivers AND Intervention e Stroke AND Caregivers AND Clinical trial. Foram selecionados para a revisão oito artigos de ensaios clínicos randomizados (ECR) e controlados publicados no período de 2008 a 2017 nos idiomas inglês, português e espanhol.ResultadosOs estudos foram desenvolvidos na Suécia, Taiwan, Alemanha, China, Índia e Estados Unidos. Intervenções psicoeducativas, apoio e aquisição de habilidades tiveram implicações positivas para cuidadores – nos âmbitos psicológico, físico e social, na qualidade dos cuidados e na aquisição dos conhecimentos dos cuidadores – e para sobreviventes – por exemplo, redução da utilização dos serviços de saúde e maior capacidade de autocuidado. A avaliação crítica dos artigos mostrou que nenhum atendeu todas as recomendações metodológicas para ECR. As principais limitações foram a incompletude dos dados e a heterogeneidade das intervenções.ConclusãoAs intervenções tiveram resultados positivos para cuidadores e sobreviventes. Contudo, estudos futuros devem considerar uma avaliação de longo prazo dos desfechos analisados, com descrição detalhada sobre o levantamento prévio das necessidades de cuidado que guiaram o estudo e disponibilização do material de apoio utilizado nas intervenções para permitir a reprodução da intervenção.

Roles of Changing Physical Function and Caregiver Burden on Quality of Life in Stroke: A Longitudinal Dyadic Analysis.

The purpose of this study was to examine changes in stroke survivor and caregiver quality of life (QOL) and to determine whether changes in survivor physical functioning and caregiver burden (ie, the impact of the physical, psychological, and social demands of caregiving) influence changes in QOL. Longitudinal design with 226 stroke survivor-caregiver dyads enrolled at survivor discharge from rehabilitation hospitals. Data collection was performed over 12 months. We measured survivor physical functioning, caregiver burden, and QOL (physical, psychological, social, and environmental) in both survivor and caregiver. Multilevel modeling was used to control for the interdependence of the data. Survivors (50% male sex) and caregivers (66% female sex) were 70.8 (SD=11.9) and 52.4 (SD=13.1) years old, respectively. Over the 12 months, stroke survivor's physical (γ=1.59; P<0.001) and psychological (γ=0.86; P<0.05) QOL significantly improved; social and environmental QOL did not P>0.05. Caregiver QOL, on average, did not significantly change over time P>0.05. Improvements in survivor physical functioning were associated with increases in survivor and caregiver physical and psychological QOL and survivor environmental QOL. Decreases in caregiver burden were significantly associated with improvements in caregiver physical, psychological, and environmental QOL but not with survivor QOL. QOL of stroke survivors and caregivers covaries and is greatly impacted by the physical function changes of the survivor. Dyadic approaches to stroke rehabilitation that acknowledge the interdependence of dyads are needed.

A mixed-methods study of smoking attitudes and behaviors among dual-smoker stroke survivor-caregiver dyads.

Although cigarette smoking is a major contributor to continued health problems after stroke, the majority of stroke survivors do not quit smoking. This may be due in part to the high rate of smoking among committed partners of stroke survivors. This study investigated the experiences of 11 dual-smoker stroke survivor-caregiver dyads, identifying themes which may be useful for understanding this entrenched population: managing the addiction as a dyad; conflicting feelings about whether smoking is an individual versus mutual concern; and dyad-level barriers and facilitators of quitting. We also present specific cessation strategies that dual-smoker dyads participating in the study described.

The psychological impact of child sexual abuse on primary caregivers

Research on child sexual abuse (CSA) suggests that support and protection from the caregiver provide the child an effective platform for quick recovery and improvement in mental health and social functioning. Nonetheless, not all caregivers are supportive of survivors; recent research findings, instead, show that incidents of CSA have debilitating psychological impact on survivors' caregivers which impair their functioning. This study explored whether a systematic link exists between an incident ofCSAand psychological changes in caregivers, thereby justifying their psychological care. The objectives of the study were to 1) explore if a relationship exists between an incident of CSA and changes in mental health of primary caregivers of abused children and 2) identify symptoms of the psychological impact ofCSA on primary caregivers of abused children. Participants in the study were 34 caregivers of CSA survivors from at Victim Support Unit (VSU), Young Women's Christians Association (YWCA) and/or University Teaching Hospital (UTH), Lusaka. Perceived Stress Scale (PSS) and a semi-structured interview schedule were used for data collection. Overall PSS scores indicated that an incident of CSA results in a debilitating psychological impact on caregivers of the survivors, there were. significant difference in the levels of perceived stress experienced by maternal caregivers (Mean rank= 19.38, n = 29) and paternal ones (Mean rank =6.60,n=5):z= 2.66,p .01).&#x0D; Symptoms of psychological distress experienced by caregivers after an incident of CSA included anxiety, fear, depression, anger, insomnia, and functional impairment. About half the care givers in the study (n= 19, 55.88%) showed support and protection for their children; others (n = 15, 44.12%) were hostile toward and blamed their children for the abuse. The caregivers therefore may need psychological services to improve their mental health and provide support to their children.

“As long as you need me I’m yours.” Caregiving for a pediatric cancer survivor

A pediatric cancer diagnosis is devastating – to children, as well as their families. Children experience a variety of negative effects, whether physical, cognitive, and/or emotional, and often face continued or newly developed effects l past remission termed late effects. However, it is imperative to note that support persons, or caregivers of survivors of pediatric cancer, are also affected by their caregiver roles as they help their survivors cope with their late effects. This study aimed to understand how caring for pediatric cancer survivors influences facets of caregivers lives. Nine primary support persons of pediatric cancer survivors (as chosen by the survivors they care for) participated in one-on-one, semi-structured interviews, in which they discussed their roles in caring for a pediatric cancer survivor, and how being a support person has affected their lives. A total of four themes emerged from the research, but for the purposes of this paper only the theme “As long as you need me I’m yours” will be discussed. From this theme, two subthemes emerged: (1) “Do their effects affect me?” and (2) “You realize what’s important and it sticks with you.” Support persons experienced negative emotional and cognitive effects, such as worrying or feelings of anxiety for their survivors, but also admitted to finding silver linings in their experiences. As well, caregivers expressed that they have developed stronger relationships with their survivors and family, in addition to developing newly optimistic outlooks on life. This work provides valuable information for policy makers and health care professionals to ensure that adequate supports and resources are available to caregivers for the multifaceted needs they may have in supporting pediatric cancer survivors.

Benefit Finding in Maternal Caregivers of Pediatric Cancer Survivors: A Mixed Methods Approach.

Benefit finding has been described as the identification of positive effects resulting from otherwise stressful experiences. In this mixed methods study, we examined the relations between qualitative themes related to benefit finding and quantitative measures of psychosocial adjustment and coping as reported by maternal caregivers of survivors of pediatric cancer. Female caregivers of survivors of pediatric cancer (n = 40) completed a qualitative questionnaire about their experiences caring for their child, along with several quantitative measures. Qualitative questionnaires were coded for salient themes, including social support and personal growth. Correlation matrices evaluated associations between qualitative themes and quantitative measures of stress and coping. Identified benefits included social support and personal growth, as well as child-specific benefits. Total benefits reported were significantly positively correlated with availability of emotional resources. Coping methods were also associated, with accepting responsibility associated with fewer identified benefits. Despite the stress of their child's illness, many female caregivers of survivors of pediatric cancer reported finding benefits associated with their experience. Benefit finding in this sample was associated with better adjustment.

Therapy Online: A Web-Based Video Support Group for Family Caregivers of Survivors With Traumatic Brain Injury.

This innovative descriptive study explores the benefits of a traumatic brain injury (TBI) caregiver support group intervention provided using videoconferencing within a password protected Web-based platform. Ten caregivers of family members with TBI were registered to a password-protected Web site (Caring for Others) that provided information about caring for a person with TBI and access to a videoconferencing support group intervention program. Where needed, caregivers were provided with computer equipment, Internet access, and training to negotiate the Web site links. Two groups of 5 caregivers of survivors of TBI participated (average age of survivor-20 years, average time since injury-4.6 years) and met online with a trained clinician weekly for 10 sessions. Using directed content analysis, transcripts of each session were coded with NVivo software. The content analysis reported group process themes, therapeutic interventions used, caregiver outcomes, and the challenges for clinicians delivering a therapeutic intervention online. Traumatic brain injury caregivers shared similar concerns and problem-solving strategies for managing caregiving tasks. Overall, participants found the sessions helpful for managing the emotional impact of caring for a family member with TBI.

Burden and Cognitive Appraisal of Stroke Survivors' Informal Caregivers: An Assessment of Depression Model With Mediating and Moderating Effects

This study proposes and evaluates a model of depression that concerns the role of burden and cognitive appraisal as mediators or moderators of outcomes among stroke survivor caregivers. A total of 105 informal caregivers of stroke survivor completed the self-report measures of Caregiver Burden Inventory, Center for Epidemiologic Studies Depression Scale, and Cognitive Impact of Appraisal Scale. The Glasgow Coma Scale and Barthel Index were used by the researcher to examine the physical functional status of the survivor. Partial least squares (PLS) path modeling was used to estimate the parameters of a depression model that included mediating or moderating effects. The model shows that burden and impact of cognitive appraisal have a significant direct and indirect impact on depression, while survivor physical functional status does not have a direct impact. The model also demonstrates that burden and impact of cognitive appraisal separately play a mediating role between survivor physical functional status and caregiver depression. In addition, cognitive appraisal has a moderating influence on the relationship between burden and depression. Overall, survivor physical functional status, burden, and cognitive appraisal were the predictors of caregiver depression, explaining 47.1% of the variance. This study has shown that burden and cognitive appraisal are mediators that more fully explain the relationship between patient severity and caregiver depression.

Distress themes encoded in narratives of the “last day”: A study among surviving caregivers.

23 Background: Survey studies have determined the prevalence of dissatisfaction among survivor caregivers related to end of life care. Toward improvement in care at EOL, we hypothesized that novel themes of distress would be identified in narratives of the “last day” from the recently bereaved. Methods: Extended narrative accounts of patients’ last day of life were collected from adult, English-speaking, caregivers (n=5) present at the death of a cancer patient. Interviews (45-120 minutes) featured open-ended questions prompting the subject to share an account of the last day, their care and coping experience. Interviews were conducted and transcribed by the author and analyzed thematically. Results: A theme of distressed communication with health care providers [HCP] could be identified in narrative segments in all 5 interviews, linked to transitions such as changes in treatment or clinical status. Narrative fragments exemplary of distress arising from communication are presented. I. A pain crisis so severe “she asked God to take her.” “I am ready to call the nurse practitioner…and she wouldn’t allow it... She doesn’t want to be a burden.” II. “I said, I don’t want you telling him directly anything. I want you to tell me first so we can go in together and tell him…the right way” including an option to “spend time together.” Soon after, the physician “came rushing into the room and as if we’d never had the conversation…, OK, we’re going to take you to the ICU.” III. “I had asked the nurse…to make sure that she had her clothes on when the funeral parlor came.” It was “important to me for her dignity.” The nurse responded: “they just cut the clothes off anyhow.” IV. “Now you’re going to pull chemo out of your hat? Look at him!...He doesn’t want to leave us but he’s ready to go.” “After we said no to chemo, [his doctor] never came near S again.” Conclusions: This pilot study of last day narratives obtained from surviving caregivers points toward a high prevalence of distress content relating to impaired communication with HCP with consequences including uncontrolled pain, conflict, perceived loss of dignity and abandonment. These data indicate the need for larger-scale studies focused on the content and style of bidirectional communication at the EOL.