Impact Of Family Caregiving Research Articles

Perceived benefit or burden? How positive and negative spiritual/religious coping impacts family caregivers of people with dementia

ABSTRACT Spiritual/religious coping can be a significant resource for individuals and families who are caring for a loved one with dementia. Little is known, however, about how different forms of spiritual/religious coping impact caregivers’ experiences of burden and benefit. This study examines the relationship between positive and negative spiritual/religious coping and caregiver burden and benefit among a sample of caregivers of people with dementia. Findings highlight the complex and multidimensional relationship that exists between spiritual/religious coping and caregivers’ perceptions of their experiences as burdensome or beneficial. Implications for research and practice are discussed.

Impacts of Caregiving for Individuals with Autism in Low-Resource Settings, a Report from the Kurdistan Region of Iraq.

Caring for children with different developmental trajectories brings various challenges, which are often exacerbated in low-resource settings. International research has shown that raising a child with autism strongly impacts family caregivers, particularly mothers. There is a dearth of information regarding caregiving for individuals with autism in the Kurdistan Region of Iraq (KRI) and for fathers as well as mothers. This study examined the similarities and differences in caregiving for mothers and fathers of a child with autism in KRI using validated rating scales to measure various aspects of their general well-being.Over two years, a sample of 118 parents of individuals with autism (81 mothers and 37 fathers) self-completed the rating scales, which were further discussed through individual interviews with service personnel mainly known to them.The findings indicated that mothers and fathers were similarly impacted. Although there were no statistically significant differences in the ratings of their general health, sources of stress, family functioning, and satisfaction with caregiving, the majority of parents had elevated ratings on all the measures. In addition, parents who rated their children higher on the Aberrant Behavior Checklist had significantly higher scores on their general health issues and were less satisfied with their caregiving role. Parents of female individuals with autism were also significantly more stressed compared to the male individuals with autism and parents of children who received a diagnosis before three years of age, reported fewer behavioral problems with their child compared to the parents who received a diagnosis when the child was older.In this sample, mothers and fathers seem to be similarly impacted by caring for a child with autism, which is contrary to findings from other countries. However, in this region, family bonds between couples and the wider family may have had an influence which further cross-cultural research in low-resource settings could help elucidate, notwithstanding the challenges this poses. The findings have policy implications for health authorities in the KRI to improve the support provided to both mothers and fathers who care for children with autism, which presently is rarely available to them.

Parenting style in childhood and depressive symptoms among family caregivers in middle and later adulthood in the United States: The role of perceived control

BackgroundChildhood experiences with parents can impact family caregivers’ attitudes and well-being in middle and later adulthood. This study aims to examine the association between remembered parenting style of parents in childhood and depressive symptoms among family caregivers in middle and later adulthood. MethodData were from the Midlife in the United States (MIDUS) study, a longitudinal national survey that included 7108 adult participants at baseline (1993). Conditional process modeling was conducted using data from 629 participants who had given personal care to their family members for one month or more in the second (2003) wave. ResultThe results showed the direct path between parental affection and depressive symptoms (direct effect: -0.105, 95% CI: -0.008, -0.116) and the direct path between parental discipline and depressive symptoms (direct effect: 0.027, 95% CI: 0.014, 0.037) were significant. Perceived control (indirect effect: 0.002, 95% CI: 0.001, 0.005, κ2= 0.001) significantly mediated the relationship between parental affection and depressive symptoms. The indirect effect between parental discipline and depressive symptoms through perceived control (indirect effect: 0.005, 95% CI: 0.003, 0.007, κ2= 0.011) was also significant. ConclusionThe findings supported the mediation effects of perceived control on the association between parenting styles and depressive symptoms among family caregivers in their middle and later life. Knowledge about the impact of parenting styles on family caregivers may help in developing and targeting support interventions.

The impact of the mySupport advance care planning intervention on family caregivers' perceptions of decision-making and care for nursing home residents with dementia: pretest-posttest study in six countries.

the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative's future care. to investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers' uncertainty in decision-making and their satisfaction with care across six countries. Second, to investigate whether mySupport affects residents' hospitalisations and documented advance decisions. a pretest-posttest design. in Canada, the Czech Republic, Ireland, Italy, the Netherlands and the UK, two nursing homes participated. in total, 88 family caregivers completed baseline, intervention and follow-up assessments. family caregivers' scores on the Decisional Conflict Scale and Family Perceptions of Care Scale before and after the intervention were compared with linear mixed models. The number of documented advance decisions and residents' hospitalisations was obtained via chart review or reported by nursing home staff and compared between baseline and follow-up with McNemar tests. family caregivers reported less decision-making uncertainty (-9.6, 95% confidence interval: -13.3, -6.0, P < 0.001) and more positive perceptions of care (+11.4, 95% confidence interval: 7.8, 15.0; P < 0.001) after the intervention. The number of advance decisions to refuse treatment was significantly higher after the intervention (21 vs 16); the number of other advance decisions or hospitalisations was unchanged. the mySupport intervention may be impactful in countries beyond the original setting.

Impact of diagnosed (vs undiagnosed) dementia on family caregiving experiences.

Most older adults with Alzheimer's disease and related dementias (ADRD) do not receive a timely formal diagnosis, although formal diagnosis is linked to improved outcomes. Little is known about how a recognized formal diagnosis impacts family caregivers, who provide crucial support for older adults experiencing ADRD. We analyzed 2017 National Health and Aging Trends Study and linked National Study of Caregiving data for a nationally representative sample of 724 (weighted n=5,431,551) caregivers who assisted an older adult with probable dementia. Probable dementia was determined via previously validated composite measure. We modeled caregiver experiences as a function of recognized formal ADRD diagnosis using weighted, logistic regression and adjusting for the relevant older adult and caregiver characteristics. Among caregivers who assisted an older adult with probable dementia, those assisting an individual with recognized formal ADRD diagnosis were significantly more likely to report emotional difficulty (aOR: 1.77; p=0.03) and family disagreement over the older adult's care (aOR: 5.53; p=0.03). They were also more likely to assist with communication during doctors' visits (aOR: 9.71; p < 0.001) and to receive caregiving-related training (aOR: 2.59; p=0.01). While a timely ADRD diagnosis may help ensure access to needed supports for older adult and caregiver alike, diagnosis must be linked to support as they navigate resultant complex emotions. Formal diagnosis is linked to caregiver integration with, and support from, the older adult's team of health care providers; therefore, reducing existing disparities in timely diagnosis is necessary to ensure all caregivers have equal access to support.

Caught between competing emotions and tensions while adjusting to a new everyday life: a focus group study with family caregivers of out-of-hospital cardiac arrest survivors.

Caring for an out-of-hospital cardiac arrest (OHCA) survivor may impact family caregivers' lives due to the sudden onset of the illness and possible secondary cognitive, emotional, and physical challenges. However, experiences of caring for an OHCA survivor are sparsely described. Thus, this study aimed to explore how family caregivers of OHCA survivors experience the potential burden. Using an explorative qualitative approach, six focus group interviews were conducted with a sample of 25 family caregivers of OHCA survivors and analysed using a phenomenological hermeneutic approach inspired by the philosophy of Ricoeur. The OHCA survivors attended a rehabilitation course, and the family caregivers were interviewed as part of the course.Based on the analysis, three themes emerged: (i) feeling unexpectedly alone and invisible; the family caregivers experienced an emotional burden that could not be shared-leading to caregiving being a lonely experience, (ii) fear of loss; the fear of losing a loved one was a constant companion contributing to the burden, and (iii) adjusting to a new everyday life; the family caregivers had difficulties adjusting to living their lives on the premise of the survivors' needs. The findings of this study emphasize the burden experienced by family caregivers and how they can be trapped in competing emotions and tensions. The possible caregiver burden following OHCA should be acknowledged. Interventions to reduce the burden should be tested and implemented as part of the clinical care of OHCA survivors and their families.

Caught between competing emotions and tensions - a focus group study exploring experiences of family caregivers of out-of-hospital cardiac arrest survivors

Abstract Funding Acknowledgements Type of funding sources: None. Background/Introduction Being a family member caring for an out-of-hospital cardiac arrest (OHCA) survivor may impact family caregivers’ lives due to the sudden onset of the illness and possible secondary cognitive, emotional and physical challenges. However, experiences of caring for an OHCA survivor are sparsely described. Purpose This purpose of this study was to explore the subjective experiences of family caregivers of OHCA survivors as a means of understanding the potential burden they face. Methods Using an explorative qualitative approach, six focus group interviews were conducted with a sample of 25 family caregivers of OHCA survivors and analysed using a phenomenological hermeneutic approach inspired by the philosophy of Ricoeur. OHCA survivors and their family caregivers were attenting at a residential rehabilitation course, where the caregivers were interviewed as part of the course. Results Three themes emerged: i) Feeling unexpectedly alone and invisible; the family caregivers felt an emotional burden that could not be shared – leading to caregiving being a lonely and anxious experience. The family caregiver felt alone with the responsibility of the shared life, ii) Fear of loss; the fear of losing a loved one was a constant companion contributing to the burden of caregiving, and iii) Adjusting to a new everyday life; the family caregivers had difficulties adjusting to living their lives on the basis of the survivors’ needs. This often resulted in an existential crisis trying to adapt (Figure 1). Conclusion The findings of this study illuminate and emphasise the burden experienced by family caregivers and how they can be caught between competing emotions and tensions. The possible caregiver burden following OHCA should be acknowledged. Systematic screening is needed to identify those at risk of high caregiver burden. Further, collaboration with family care givers should be an essential part of post-cardiac arrest care, and interventions to reduce the burden should be tested and implemented as part of the clinical care of OHCA survivors and their families.

Employment and family caregiving in palliative care: An international qualitative study

Background: Family caregivers provide the majority of palliative care. The impact of family caregiving on employment and finances has received little research attention in the field of palliative care. Aim: The aim of this study was to explore perspectives and experiences of combining paid employment with palliative care family caregiving, and to assess the availability and suitability of employment support across three countries – the United Kingdom (UK), Aotearoa New Zealand and Canada. Design: A qualitative descriptive study design was used. Semi-structured interviews were held with 30 key informants with professional or personal experience in palliative care from the UK (n = 15), Aotearoa New Zealand (n = 6) and Canada (n = 9). Interviews were recorded, transcribed and analysed using the principles of thematic analysis. Results: Four main themes were identified: (1) significant changes to working practices are required to enable end of life family carers to remain in work; (2) the negative consequences of combining caregiving and employment are significant, for both patient and carer; (3) employer support for working end of life caregivers is crucial but variable and; (4) national, federal and government benefits for working end of life family carers are necessary. Conclusion: Supporting carers to retain employment whilst providing care has potential benefits for the patient at end of life, the caregiver, and the wider economy and labour market. Employers, policymakers and governments have a role to play in developing and implementing policies to support working carers to remain in employment.

Understanding the Implications of Peer Support for Families of Children With Neurodevelopmental and Intellectual Disabilities: A Scoping Review.

Background: Families are integrally involved in day-to-day caregiving of children with neurodevelopmental and intellectual disabilities (NDID). Given the widespread and increasing prevalence of children with NDID and the impact of family caregiving on psychological, social, and economic implications for both the child and family, understanding and supporting these families is an important public health concern.Objective: We conducted a scoping review on peer support networks to understand their implications on families. Considering increasing prevalence of NDID's, understanding the implications of existing networks is critical to improve and nurture future support networks that can complement and reduce the burden on existing formal support systems.Design: A comprehensive search of multiple databases was conducted. Articles were screened by two reviewers and any disagreements were resolved by a third reviewer. We explored existing research on parent-to-parent peer support networks, which included networks that developed informally as well as those that involved a formal facilitator for the group interpersonal processes. There were no limits on the study design, date and setting of the articles. We included all research studies in English that included an identifier for (i) “peer support networks,” (ii) “children with neurodevelopmental and intellectual disabilities” and (iii) “family caregiver outcomes.”Results: We identified 36 articles. Majority of the studies were conducted in North America, and were face to face networks. They included families of children with a wide range of NDIDs. Relevant information extracted from different studies highlighted peer support network characteristics and development process, needs of family caregivers attending these networks, factors affecting caregiver participation and the impact of peer support networks on family caregivers. These networks represent a way to strengthen family caregivers, developing resilience and social interactions. Family caregivers sharing similar experiences support one another and provide critical information to each other. Although results are encouraging, future studies incorporating improved study designs are needed to better evaluate the effectiveness of peer support networks. Furthermore, studies where peer support networks develop organically while the child is supported are warranted.Conclusion: Although results obtained are encouraging, our findings support the need for further research studies of peer support networks with better designs and more detailed description of the factors involved in the development.

Socio-economic impact of heart failure in Russia

Heart failure (HF) significantly worsens the patient quality of life and leads to the disability of their significant part, as well as increases the risk of death, which in turn causes economic damage.Aim. To assess the annual socio-economic impact of HF in Russia.Material and methods. To assess the socio-economic impact of HF, a model was developed, which assessed the number of HF patients seeking medical care (data from the epidemiological studies), the number of those with disabilities and the mortality rate among them. We also evaluated the costs of drug therapy (data from the government procurement reports) and hospitalization (data from the compulsory health insurance tariffs), social benefits due to disability, and death impact on the gross domestic product. Data on the prescription rate, hospitalizations and mortality was obtained from Russian registries of patients with cardiovascular diseases. Using the foreign study, the costs of family caregiving were also calculated.Results. According to modeling data, there are 7,1 million people with HF seeking medical care in Russia. In this case, the annual economic impact of HF in the context of government spending, is RUB 81,86 billion, including medical costs of RUB 18,6 billion, direct nonmedical costs of RUB 47,1 billion, and indirect costs of RUB 16,2 billion. The impact of family caregiving is RUB 72,4 billion. In the structure of medical expenses, 73,6% is hospitalization costs, while the main costs of drug therapy are borne by patients, since only a part of them (19,6%) receive the necessary medications within assistance programs. In patients with HF with reduced ejection fraction, medical costs are 56% higher than in patients with HF with preserved ejection fraction.Conclusion. HF causes significant economic burden to the state. Improving the healthcare system for this category of patients, including preferential drug provision, will reduce HF-related mortality, the healthcare system costs and, accordingly, reduce the economic impact on the state and society.

The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

This article provides a narrative review on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) through a psychosocial lens and examines how this impairment affects its sufferers during adolescence and adulthood, as well as how it impacts family caregivers and healthcare professionals’ mental health. Since there has been a lack of investigation in the literature, the primary psychosocial stressor that this review focuses on is loneliness. As such, and in an attempt to help establish a theoretical framework regarding how loneliness may impact ME/CFS, loneliness is comprehensively reviewed, and its relation to chronic illness is described. We conclude by discussing a variety of coping strategies that may be employed by ME/CFS individuals to address their loneliness. Future directions and ways with which the literature may investigate loneliness and ME/CFS are discussed.

Blessings or burdens: an Interpretative Phenomenological Analysis (IPA) study on the motivations and their impact on end-of-life caregiving among Asian family caregivers

BackgroundWhile the impact of family caregiving has been well-documented, many of such studies center on investigating external factors such as socioeconomic status, accessibility to resources and availability of social support as the primary causation of caregiver wellbeing outcomes. This paper explores the motivations that drive family caregivers in supporting their family members at the end-of-life, and critically examines how internal appraisal processes of such motivations can both positively and negatively impact their wellbeing.MethodsThis study adopted an interpretative phenomenological analysis (IPA) to investigate the motivations and internal appraisal processes of Asian family caregivers in Singapore who were tending to a dying family member. Qualitative dyadic interview data (N = 20) was drawn from a larger Randomized Controlled Trial for a novel Family Dignity Intervention (FDI) for palliative care patients and their families. The sampling population consisted of participants aged 21 and above who were identified to be the primary caregivers of older palliative care patients with a prognosis of less than 12 months. Data collection was conducted in the homes of patients and family caregivers.ResultsFindings revealed six themes that could either nurture or diminish caregiver wellbeing: 1) Honoring Fidelity (caregivers were motivated to commit to their caregiving roles in order to avoid regret), 2) Alleviating Suffering (caregivers were motivated to relieve their family member’s pain), 3) Enduring Attachment (caregivers were motivated to spend time together with their family member), 4) Preserving Gratitude (caregivers were motivated to express their appreciation to their family member by caregiving), 5) Navigating Change (caregivers were motivated to adapt accordingly to changes in the illness trajectory) and 6) Reconciling with Mortality (caregivers were motivated to respond accordingly to their family member’s prognosis). The final theme of the Wellbeing Determinant is posited as an indication of self-determination, and is conjectured to influence how caregiving motivations are appraised by the caregiver.ConclusionFulfilling and enhancing one’s sense of self-determination appears central to infusing one’s caregiving motivations with positive meaning, and consequently nurturing one’s wellbeing in the end-of-life caregiving journey. These findings are discussed with recommendations for healthcare professionals working with family caregivers of palliative care patients.

The Burden and Perceived Stress on Family Caregivers of Patients With Orofacial Cleft Deformities in The Perioperative Period of Cleft Repair.

Different stages along the trajectory of cleft care may present with different and peculiar challenges that may negatively impact family caregivers, leading to considerable stress and burden. This study aims to evaluate the family caregiver burden and perceived stress of caring for patients with cleft deformities. Contributing factors to family caregivers’ burden in the perioperative period of cleft repair was also identified. A cross-sectional design that included 90 adult caregiver–patient pairs was employed. Semi-structured questionnaire was used to collect necessary information. The level of caregiver’s burden was assessed using the Zarit burden interview score. The results demonstrated the levels of caregiver burden as severe (4.4%), moderate to severe (21.1%), mild to moderate (40%), and little or none (34.5%). The only significant and independent predictor of caregiver burden was earning less than US$50/month (odds ratio = 2.30, 95% CI = 0.95-5.61, P = .066). Coping strategy was mainly family support (98.9%), while the greatest need expressed was financial assistance (66.7%). Our findings suggests that efforts geared at reducing direct and indirect cost of cleft care may help in reducing caregivers’ burden.

‘This is your golden time. You enjoy it and you’ve plenty time for crying after’: How dysphagia impacts family caregivers of people with amyotrophic lateral sclerosis – A qualitative study

Background: Dysphagia (swallowing impairments) is a well-recognised symptom of amyotrophic lateral sclerosis. Caring for a person with amyotrophic lateral sclerosis has been recognised as a complex and demanding task. No study to date investigated the impact of dysphagia on the lives of caregivers of people with amyotrophic lateral sclerosis. Aim: To investigate the experiences of dysphagia from the perspective of family caregivers of people diagnosed with amyotrophic lateral sclerosis. Design: Interpretative phenomenological analysis was employed. Individual interviews (n = 15) plus observations of mealtime preparation were conducted, where possible (seven or n). Setting/participants: Participants comprised family caregivers of people with amyotrophic lateral sclerosis and dysphagia living in the South West of Ireland (n = 10). Findings: Dysphagia transformed the mealtime experiences of the caregivers and changed their approaches to food. Frustration related to the inability to stabilise the weight of the person with amyotrophic lateral sclerosis and the fear of choking emerged strongly. The caregivers strived to ensure the safety of people with amyotrophic lateral sclerosis during meals by providing constant supervision. Despite the challenges precipitated by dysphagia and amyotrophic lateral sclerosis, the caregivers wished to maintain normality for as long as they perceived it to be possible. Conclusion: This study provides a unique contribution in advancing our understanding of the impact of dysphagia on the caregivers of people with amyotrophic lateral sclerosis. Professionals must explore and recognise the needs of the caregivers and provide them with appropriate support, especially how to manage choking.

Impact of family caregivers' awareness of the prognosis on their quality of life/depression and those of patients with advanced cancer: a prospective cohort study.

A caregiver's prognostic awareness can affect clinical decisions for the patient. The purpose of this study was to examine the impact of family caregivers' prognostic awareness on the quality of life (QOL) and emotional state of both patients with advanced cancer and their caregivers. This prospective cohort study was conducted from December of 2016 to January of 2018. A total of 159 patients with advanced cancer and an equal number of caregivers participated. The investigation tools used include the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C15-Palliative, the McGill Quality of Life Questionnaire, and the Patient Health Questionnaire-9, and evaluation was performed at baseline, 3months, and 6months. Covariance analysis with a general linear modeling was used to compare changes in quality of life scores according to the caregivers' awareness of the prognosis. Mean patient overall QOL score increased in the group of caregivers who were aware of prognosis and decreased in the caregivers who were not aware of the prognosis (p = 0.018). The changes over time in the patients' QOL scores associated with symptoms improved with caregiver awareness (pain, p = 0.017; dyspnea, p = 0.048; appetite loss, p = 0.045). The percentage of depressed patients was smaller after 3months in the group with caregivers aware of the prognosis (baseline to 3months p = 0.028). Caregivers who did not understand their patients' prognosis exhibited better existential well-being (p = 0.036), and the incidence of depression was lower in this group at 3months (p = 0.024). Caregivers' prognostic awareness may improve the quality of life and mood in patients with advanced cancer; however, this awareness may harm the quality of life and mood of the caregivers. These results may aid in developing in-depth interventions regarding prognosis for both patients and their caregivers.

Exploring interface design to support caregivers' needs and feelings of trust in online content.

IntroductionFamily caregivers of people living with dementia require a range of accurate, current, and reliable information throughout the care trajectory. Much of this information is available online, however it can be difficult for caregivers to identify and decide what content is relevant to them. Little is known about how online design cues impact family caregivers’ decision to assess how trustworthy information is and whether to engage with it.MethodsOur exploratory research focused on the interface design of CARE-RATE, an online search tool intended to support more effective information searches for family caregivers seeking dementia care-related resources. Data from focus groups were coupled with design literature to inform the development of three mockups that were evaluated by seven dementia caregiver experts.ResultsParticipants preferred a search bar design because of its simplicity, familiarity, and functionality. Design elements that impact trust included logos from reputable organizations, transparency of content author, and ratings from other caregivers.ConclusionFeelings of trust regarding information, including the ability to ascertain trustworthiness, is a major aspect of caregivers’ willingness to engage with online content. Transparency and familiarity appear to be key elements that impact caregivers’ trust in online information, which agrees with current web design research.

Pilot Test of a Computer-Based System to Help Family Caregivers of Dementia Patients.

Family members absorb much of the care of dementia patients. The burden of care substantially impacts caregivers' health, further straining our healthcare system. By 2050, the incidence of Alzheimer's disease will more than double, increasing the numbers of family caregivers proportionally. Interventions that reduce their burden are needed to preserve their health as well as the viability of the healthcare system. This paper reports on the development and feasibility testing of a computer-based system intended to improve the lives of caregivers. D-CHESS (Dementia-Comprehensive Health Enhancement Support System) allows users to obtain information, communicate with other caregivers, get help with care decisions, and share information with experts. Thirty-one caregivers were randomly assigned to an intervention group receiving D-CHESS for 6 months or to a control group receiving a caregiving book. Surveys at 0, 2, 4, and 6 months evaluated caregiver burden, family conflict, satisfaction with decisions, social support, loneliness, anxiety, depression, and coping competence. Survey findings suggest D-CHESS participants may perform better on measures of social support, anxiety, loneliness, and coping competence; the groups were equivalent on caregiver burden, decision satisfaction, and depression, and the control group reported less family conflict than the intervention. D-CHESS use data suggested enhancements to system design and content to increase awareness and use of various features. This study suggests that D-CHESS has potential to positively impact family caregivers and that the system merits further development and investigation with a full-scale clinical trial.

Improving Coping Styles in Family Caregivers of Psychiatric Inpatients Using Planned Behavior Problem-Solving Training.

The consequences and high costs of psychiatric disorders impact family caregivers greatly. Health services should identify and provide accessible support programs to facilitate effective caregiver coping. The aim of this study was to determine the effectiveness of a theory-of-planned-behavior-based problem-solving training program on the coping styles of family caregivers of psychiatric inpatients. In this two-group, randomized control trial, 72 family caregivers were randomly assigned to either a control group receiving standard care or an intervention group receiving a training program (eight sessions over 4 weeks). Demographic information was recorded at baseline, and the Coping Inventory for Stressful Situations was administered to both groups at baseline, immediately postintervention, and 1-month follow-up. Immediately after the intervention, the intervention group earned significantly higher task-oriented coping style scores (mean difference = 5.03, p = .015) than the control group, but no significant difference was detected between the two groups for either emotion- or avoidance-oriented coping style scores. At 1-month follow-up, the intervention group earned significantly higher scores than the control group for task-oriented (mean difference = 8.56, p < .001) and emotion-oriented (mean difference = 7.14, p = .002) coping styles. No improvement in avoidance-oriented coping style at the postintervention or follow-up time points was detected. Implementation by nurses and other health professionals of problem-solving training programs that are based on the theory of planned behavior is recommended to strengthen the use of task- and emotion-oriented approaches that help family caregivers of psychiatric patients better cope with stress.

Family support in late life: A review of the literature on aging, disability, and family caregiving

ABSTRACTFor older adults and people with disabilities in the United States, family caregiving is an important part of remaining at home and in the community. As care recipients and caregivers age, family dynamics change, and the health, social, and financial impacts of this (largely unremunerated) work have implications for individuals, families, and social policy. In this review, the authors map the literature across multiple fields related to disability and aging to understand caregiving in late life, what it means to be an older caregiver and/or to care for older people. The authors summarize the findings of 97 articles to address the care, services, and supports family caregivers provide for older adults; negative and positive impacts for caregivers serving in this role; supports that family members use or need; and societal impact of family caregiving. Much of the literature describes the work family caregivers provide and negative impacts of caregiving. Less attention is devoted to caregiving benefits, supports used by family caregivers, and societal impacts. The authors conclude with an agenda for future research that attends to the need for research that includes: more diverse samples, new types of caregivers, longitudinal data, qualitative data and analysis, and comparative research.

Terminal cancer patients’ and their primary caregivers’ attitudes toward hospice/palliative care and their effects on actual utilization: A prospective cohort study

Background: Previous studies on hospice/palliative care indicated that patients’ socio-demographic factors, disease status, and availability of health-care resources were associated with hospice/palliative care utilization. However, the impact of family caregivers on hospice/palliative care utilization has not been thoroughly investigated. Aim: To evaluate the association between attitudes toward hospice/palliative care of both patients with terminal cancer (defined as progressive, advanced cancer in which the patient will die within months) and their family caregivers and utilization of inpatient hospice/palliative care facilities. Design: A prospective observational cohort study was performed in 12 hospitals in South Korea. Attitude toward hospice/palliative care was assessed immediately after terminal cancer diagnosis. After the patient’s death, caregivers were interviewed whether they utilized hospice/palliative care facilities. Participants: A total of 359 patient–caregiver dyads completed baseline questionnaires. After the patients’ death, 257 caregivers were interviewed. Results: At the baseline questionnaire, 137/359 (38.2%) patients and 185/359 (51.5%) of caregivers preferred hospice/palliative care. Preference for hospice/palliative care was associated with awareness of terminal status among both patients (adjusted odds ratio: 1.87, 95% confidence interval: 1.16–3.03) and caregivers (adjusted odds ratio: 2.14, 95% confidence interval: 1.20–3.81). Religion, metastasis, and poor performance status were also independently associated with patient preference for hospice/palliative care. At the post-bereavement interview, 104/257 (40.5%) caregivers responded that they utilized hospice/palliative care facilities. Caregiver’s preferences for hospice/palliative care were significantly associated with actual utilization (adjusted odds ratio: 2.67, 95% confidence interval: 1.53–4.67). No patient-related factors were associated with hospice/palliative care utilization. Conclusion: Promoting awareness of prognosis and to improve communication between doctors and families is important for facilitating the use of hospice/palliative care.