What Does the Informal Caregiver of a Terminally Ill Cancer Patient Need? A Study from a Cancer Centre

Aims:

To assess the needs of informal caregivers of terminally ill cancer patients.

Materials and Methods:

Fifty four informal caregivers of patients registered in our palliative care service were interviewed 3–6 months after the death of the patient with the help of a semistructured questionnaire covering the physical, medical, psychological, social, and information domains.

Results:

Most of the caregivers were middle aged and had no prior experience of care giving. The caregivers were satisfied by the information and medical support provided to them by their treatment team. Most had an “emergency plan”. Caregivers had unmet needs including homecare, psychological support, and financial help.

Conclusions:

informal caregivers provide most of the nursing and psychological support to the patient. However, palliative care services need to recognize that the caregiver too may need psychological and technical support.     

Older adults with chronic illness – Caregiver burden in the Asian context: A systematic review

IntroductionUpsurge in life expectancy, filial responsibility of caring, and healthcare advances have increased the older adult population in Asia. The last decade has witnessed nuclear families' proliferation in Asia, leaving family caregivers with more accountability and responsibility. This review explores the pattern of caregiver burden among caregivers of older adults with chronic illness in Asia.MethodsPRISMA guidelines serves as the framework for this systematic review. Studies from selected databases assessed caregivers' physical state, psychological dysfunction, and or burden as an outcome measure. The Newcastle - Ottawa Quality Assessment Scale appraised the quality of the selected studies.ResultsThe review included 12 research articles. Caregivers consistently report mild to a moderate burden. Care recipient with functional dependency, comorbidities, memory, and sleep impairments, escalate caregiver burden. Caregiver variables intensifying burden were advancing age, male gender, spouse as a care recipient, longer care provision duration, and no assistance.ConclusionOptimal levels of emotional well-being, significant family/social support, and self-preparedness among caregivers are grounds for their empowerment.Practical ImplicationsA paradigm shift from 'caregiver burden' to 'caregiver resilience' is advocated. Routine screening, preventive measures (skill-building and psychosocial empowerment), and restorative services (respite care and problem-based home visiting) for caregivers are forecasted.     

Living with mesothelioma: A systematic review of patient and caregiver psychosocial support needs

ObjectivePractice guidelines emphasize the importance of investigating psychosocial distress in mesothelioma patients and family caregivers. We aimed to synthesize research on the psychosocial support needs of mesothelioma patients and their family caregivers.MethodsWe conducted a systematic review with a narrative synthesis and quality assessment. The review process adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines.ResultsMEDLINE, EMBASE, Scopus, PsychArticles, and PsycINFO were searched until December 2020 and 37 studies in English met inclusion criteria. Most (n = 24) included mesothelioma patients as a very small proportion of their cancer samples. A narrative synthesis was conducted on the 13 studies including only mesothelioma patients (n = 297) and/or caregivers (n = 82). Patients and caregivers want improvements in the diagnosis delivery and access to palliative care. Patients want emotional support, patient-centered treatment, improved information about illness progression and death, and to meet others with mesothelioma. Caregivers want one-on-one practical and emotional support. Study quality varied.ConclusionsFew studies focus on the psychosocial support needs relevant to mesothelioma. Mesothelioma patients and family caregivers highlight targeted psychosocial care as an unmet need.Practice ImplicationsEfforts are required to design and test psychosocial interventions for this vulnerable and overlooked group.Protocol RegistrationPROSPERO (registration number CRD42020167852).     

What are we doing to support informal caregivers? A scoping review of caregiver education programs in cancer care

ObjectivesThe cancer system is experiencing a rise in cancer prevalence, a workforce shortage, and is resource-stretched. In this environment, informal caregivers (unpaid family caregivers of cancer patients) are required to take on expanded care roles and experience the debilitating effects of caregiver burden. Education programs are increasingly being developed to support caregivers. The aim of this review is to summarize what is known about these programs.MethodsA scoping review was conducted from May 2019 to January 2020. The literature search yielded 34,906 articles.Results119 articles were included, and ninety-two (77%) were focused on in-person psychoeducational programs.ConclusionMost caregiver programs have a unidimensional focus on psychoeducational training, demonstrating a need for more comprehensive programming to address the full spectrum of caregiver needs.Practice implicationsClinicians and educators must collaborate to create accessible, equitable education programs that comprehensibly address the needs of unpaid family caregivers beyond addressing psychological aspects of cancer care. This will ensure that a broader range of patients and caregivers are equipped with the knowledge and skills needed to cope with a cancer diagnosis, navigate the health system and to maintain their quality of life.     

Information seeking behavior and perceived health literacy of family caregivers of persons living with a chronic condition. The case of spinal cord injury in Switzerland

ObjectiveTo examine the information seeking behavior and health literacy of caregivers of individuals living with spinal cord injury in Switzerland and their impact on the caregiving experience.MethodsNationwide survey of family caregivers of people with spinal cord injury (N = 717). Caregivers aged 18+ who assisted with activities of daily living were included. Self-reported information seeking behavior, including topics, preferred sources, and health literacy were assessed and analyzed.ResultsHealth professionals were the most trusted source of information. Among information-seekers, higher health literacy levels were shown to be associated with lower subjective caregiver burden and, in turn, with higher caregivers’ satisfaction with own health.ConclusionCaregivers use information on different topics and coming from different sources. In order for information to improve the caregiving experience, however, caregivers need health literacy skills to make sense of it.Practice implicationsBuilding health literacy is a promising approach to support caregivers in their activities, reduce their subjective burden, and even to improve their health. Interventions should consider involving health professionals, as the most trusted source of information, and address both health-related and more practical issues.     

Caregiver opinions about fragile X population screening

PurposeWe sought to determine caregiver perceptions about population screening for fragile X and to examine factors potentially associated with support for screening.MethodsWe asked 1,099 caregivers of a child with fragile X syndrome or a fragile X carrier to rate whether free, voluntary screening should be offered preconception, prenatally, neonatally, or when problems occur. Caregivers chose a preferred time for screening, reported whether screening would affect parent–child bonding, indicated preferences for carrier detection, and gave reasons for their choices.ResultsCaregivers endorsed all forms of screening, but prenatal screening was less strongly endorsed than preconception or postnatal screening. Most (79%) preferred preconception carrier testing, allowing more options when making reproductive decisions. Most thought that screening should also disclose carrier status and believed a positive screen would not negatively affect parent–child bonding. Maternal education, caregiver depression, family impact, and severity of disability were not associated with screening opinions, but parents who only had carrier children were less likely to endorse prenatal screening.ConclusionCaregivers of children with fragile X widely endorse screening. However, because different parents will make different choices, screening may need to be offered at multiple times with careful consideration of consent and informed decision-making.Genet Med 2012:14(1):115–121.     

Gender impact of caring on the health of caregivers of persons with dementia

BackgroundDementia is a brain syndrome that affects a growing number of persons worldwide and generates a strong and progressive demand for care from a family caregiver, usually females.ObjectiveWe aimed to describe the care provided by family caregivers of persons with dementia as well as the impact on their health and its interrelation with gender.Patient involvementThis study was carried out in collaboration with the 13 associations of family caregivers of persons with dementia that are part of a Regional Federation. This partnership worked towards bettering patient care and proposing improvements to the public health system.MethodsA multi-institutional cross-sectional study. A total of 462 primary family caregivers of persons with dementia from north-west Spain were included. Data were collected between January and April 2019 with an anonymous self-administered validated questionnaire (ICUB-97) based on Virginia Henderson’s nursing care model.ResultsThe most affected needs in family caregivers are those related to “recreational activities”, “communication” and “rest and sleep”. Statistically significant differences between male and female participants’ pattern of care and health-related impacts were found, especially in issues related to work and family reconciliation.DiscussionCare plans should be developed taking gender perspective into account. From a nurse model point of view, more research is necessary to reduce health disparities. This study provides an assessment of gender differences in care and the impact on caregivers’ health.Practical valueRegarding the specific health conditions of female caregivers and from a holistic point of view, these findings could provide novel and interesting data that might help to implement gender perspective in nursing care plans, generally invisible in routine clinical practice.     

Caregiver reports of physician risk counseling for adolescents with special health care needs

BackgroundResearch has indicated disagreement between physicians, caregivers, and adolescents with special health care needs regarding appropriate risk counseling.ObjectiveThe study examines caregivers’ perceptions of adolescent risk counseling. We hypothesize caregivers of adolescents with special healthcare needs will perceive a lower rate of risk counseling.MethodsData come from the 2016 National Survey of Children’s Health. The sample included 13,542 adolescents. Analysis completed using logistic regression with odds ratios.ResultsThe results indicate no difference in caregiver perceptions of risk counseling for adolescents with special healthcare needs. Gender, race/ethnicity, and relationship between caregiver and provider influenced perception of receipt of risk counseling, regardless of health status.ConclusionsAlthough adolescents with special healthcare needs perceive their risk behavior counseling to be lacking in quantity/quality, caregivers perceive such counseling does occur. These results highlight the need for comprehensive risk counseling for groups at risk of known health disparities.Practice implicationsPhysicians and providers should be provided with the training and resources needed to be comfortable to engage in risk counseling. Adolescents need the opportunity to see their provider privately, and education to advocate for information risky behaviors. Parents, providers, and adolescents should be included in future risk counseling intervention plans.     

Online resources for family caregivers of cognitively competent patients: A review of user-driven reputable health website content on caregiver communication with health professionals

ObjectiveMost patients want their family involved in consultations and decisions, however some family caregivers report feeling overwhelmed and unsure of their role. As caregivers are increasingly looking to medical websites for guidance, this study aimed to review reputable web-resources available to inform family caregivers on how to be involved in medical consultations and decisions.MethodsGoogle searches were performed using lay search strings, to imitate how a cancer caregiver may locate information. Relevant webpages were included if they were directed at caregivers and from a reputable health organisation. Qualitative content analyses were performed on the included webpages.Results22 webpages were included and 8 were directed at caregivers of cancer patients. Six key categories of information were identified: preparing for consultations, helping during consultations, advocating for the patient, decision-making, communicating in hospital settings, and communicating with family and friends.ConclusionA range of online resources were found to guide family caregivers, particularly cancer caregivers, on involvement in consultations. However, few provided information to caregivers on complex situations such as treatment decision-making, advocating for patient’s needs, and communicating in a hospital setting.Practice implicationsClinicians can actively refer family caregivers to online resources that support caregiver communication in medical settings.     

Development and psychometric testing of the European Heart Failure Self-Care behaviour scale caregiver version (EHFScB-C)

BackgroundThe European Heart Failure Self-Care Behaviour Scale (EHFScBS) is used worldwide to measure heart failure (HF) patient self-care, but a caregiver version does not exist.ObjectiveTo develop and test the European HF Self-Care Behaviour Scale for Caregivers (EHFScBS-C) in a population of informal caregivers of HF patients.MethodsThe EHFScBS-C was derived from the EHFScBS to measure the extent to which caregivers contribute to HF patient self-care. The EHFScBS-C was developed in English and then translated into Italian, Spanish and Dutch, after which it was back-translated. EHFScBS-C data were collected from 193 HF caregivers enrolled in Italy, Spain and the Netherlands.ResultsExploratory factor analysis revealed two factors with supportive fit indices (CFI = 0.990; RMSEA = 0.048): caregivers’ contributions to HF self-care related to medical issues, and caregivers’ contributions related to lifestyle. Internal consistency reliability was supported as well (Cronbach’s alpha 0.90 for the overall scale). Construct validity was demonstrated with significant correlations with the Caregiver Preparedness Scale.Conclusion and Practice ImplicationsThe EHFScBS-C has adequate validity and reliability for its use in clinical practice and research to measure the extent to which caregivers contribute to HF patient self-care. The EHFScBS-C can be used in combination with the EHFScBS to conduct dyadic studies.     

Pre-visit Concerns: What caregivers hope to address at a specialty clinic for Down syndrome

PurposeIndividuals with Down syndrome have an increased prevalence of various medical conditions across the lifespan; multidisciplinary Down syndrome specialty clinics can address these needs. However, the caregiver-perceived purpose of bringing their loved one to a Down syndrome specialty clinic has not been investigated.MethodsRetrospective review of electronic intake forms, completed prior to visits at MGH's Down Syndrome Program, was completed. Caregiver concerns were coded and analyzed by visit type (new patient vs follow-up), age, gender, and race.ResultsInformation from 722 unique patients (53.6% male) across 1,526 visits from 2014 to 2021 were reviewed resulting in 3,762 concerns. Caregivers of children with Down syndrome ages 0–4, and 13–39 reported a top concern of health maintenance which includes establishing patient care and preventative measures. Behavior was the top concern for caregivers of children with Down syndrome ages 5–12. For adults with Down syndrome, ages 40 years or older, neurologic considerations, including regression and dementia, was the top caregiver concern. Across the entire sample, the top three concerns did not vary by gender.ConclusionThe top concerns of caregivers of individuals with Down syndrome fluctuate across the lifespan. Growing multidisciplinary specialty clinics for Down syndrome may use these findings to ensure that caregivers’ concerns are addressed and improve patient experience.     

Unmet needs of children with peanut allergy: Aligning the risks and the evidence

BackgroundPeanut allergy is a potentially severe and lifelong allergy, with few effective treatments or preventive measures.ObjectiveTo convene an expert panel of allergists, pediatricians, and advocates to discuss and highlight unmet needs in the prevention and management of peanut allergies.MethodsLiterature searches of PubMed were performed. The panel evaluated published data on the prevention of peanut allergy, treatment of existing peanut allergy, and management of reactions after unintentional peanut exposures.ResultsThe following key unmet needs in the prevention and management of peanut allergy were identified: (1) enhancing and optimizing implementation of early peanut introduction as a means of preventing the development of peanut allergy, (2) developing knowledge translation strategies regarding the safety and efficacy data for current and emerging immunotherapies for peanut-allergic children to support their use in clinical practice, and (3) promoting understanding of true exposure risk in allergic individuals and ensuring access to epinephrine for unintentional exposures that provoke severe reactions. Practitioners should help educate caregivers about the actual risks associated with peanut allergy and its prevention and management so that treatment decisions can be evidence based rather than fear based. Support tools are needed to help address caregiver goals, expectations, and psychological barriers, as well as identify facilitators for prevention and treatment strategies.ConclusionThere are significant unmet needs in our understanding of peanut allergy; addressing these needs will help to enhance understanding of how to most effectively prevent and treat peanut allergy, as well as educate the food-allergic and nonallergic community regarding current evidence-based practices.     

Essential information and support needs of family caregivers

The purpose of this study was to identify essential information and support needs of family caregivers for individuals with Alzheimer's disease or a related dementia, and to examine the relationship between caregiver characteristics and needs. Caregivers (n=128, response rate=49.4%) returned a survey detailing information needs, support needs, and personal information. The need for information concerning diagnosis/treatment and legal/financial issues was more important than general information about the disease. Specifically, information about health plan coverage was most important. Experienced caregivers also needed legal/financial information, as well as support. Female caregivers rated needs related to support as significantly more important than male caregivers. Practitioners should realize that caregivers may have different information and support needs and these needs may change throughout the caregiving experience.     

Understanding cancer caregiver burden over time: Dyadic assessments of family cohesion,conflict and communication

ObjectivePreviously we identified three distinct cancer communication concordance groups among cancer patient-caregiver dyads. This secondary analysis examined patient and caregiver reports of family functioning (cohesion and conflict) as associated with cancer communication concordance and assessed each as independent predictors of perceived caregiver burden among hematological cancer caregivers.MethodsA case series of hematological cancer patient-caregiver dyads (n = 171) were recruited from oncology clinics in Virginia and Pennsylvania and followed for 2 years. Using the previously identified communication groups this analysis prospectively examines patient and caregiver perceptions of family cohesion and conflict and the association with burden over time.ResultsCaregiver burden decreased over time. Caregiver, but not patient perceptions of family cohesion decreased over time; decreased cohesion and increased conflict was associated with greater cancer communication discordance.ConclusionsThis work lends further support to the use of cancer communication congruence typologies for identifying potentially vulnerable dyads. Discordant cancer communication and declining caregiver perceptions of family cohesion may represent opportunities to intervene using family focused supportive services.Practice implicationsOnly caregiver perceptions of family functioning were associated with burden therefore identifying and supporting those caregivers with worsening communication and family function is important.     

Problems of caregiving spouses of patients with dementia

Twenty-six caregiving spouses of patients with dementia in the Netherlands were interviewed to better understand their problems and needs. Special attention was paid to the information the caregiver received from their general practitioner. Nineteen caregivers indicated that they received little or no information about the disease and its possible consequences. Furthermore, they experienced many problems, because of the disease and the daily care they provided; eleven caregivers indicated a decrease in social contact, which resulted in further problems. Caregivers who sought professional help at an early stage experienced fewer problems in providing daily care. The results of this project suggest that in future health education policy special attention should be paid to the role of the general practitioner and to the importance of a caregiver's social network.