Anna-leila Williams

Effects of a nursing intervention on quality of life outcomes in post-surgical women with gynecological cancers.

Objective: Women with gynecological cancers have reported poor health‐related quality of life (QOL), with complex physical and psychological needs post‐surgery and during chemotherapy treatment. There are no studies reporting interventions addressing these needs post‐hospital discharge in this population.

Perspectives on spirituality at the end of life: A meta-summary

OBJECTIVE A meta-summary of the qualitative literature on spiritual perspectives of adults who are at the end of life was undertaken to summarily analyze the research to date and identify areas for future research on the relationship of spirituality with physical, functional, and psychosocial outcomes in the health care setting. METHODS Included were all English language reports from 1966 to the present catalogued in PubMed, Medline, PsycInfo, and CINAHL, identifiable as qualitative investigations of the spiritual perspectives of adults at the end of life. The final sample includes 11 articles, collectively representing data from 217 adults. RESULTS The preponderance of participants had a diagnosis of cancer; those with HIV/AIDS, cardiovascular disease, and ALS were also represented. Approximately half the studies were conducted in the United States; others were performed in Australia, Finland, Scotland, and Taiwan. Following a process of theme extraction and abstraction, thematic patterns emerged and effect sizes were calculated. A spectrum of spirituality at the end of life encompassing spiritual despair (alienation, loss of self, dissonance), spiritual work (forgiveness, self-exploration, search for balance), and spiritual well-being (connection, self-actualization, consonance) emerged. SIGNIFICANCE The findings from this meta-summary confirm the fundamental importance of spirituality at the end of life and highlight the shifts in spiritual health that are possible when a terminally ill person is able to do the necessary spiritual work. Existing end-of-life frameworks neglect spiritual work and consequently may be deficient in guiding research. The area of spiritual work is fertile ground for further investigation, especially interventions aimed at improving spiritual health and general quality of life among the dying.

The Caregiving Experience in a Racially Diverse Sample of Cancer Family Caregivers

The literature supports a variety of predictor variables to account for the psychological and stress burden experienced by cancer family caregivers. Missing among the predictor variables are the differences by or influence of race/ethnicity. The purpose of this study was to describe the sample, explore differences in outcomes by patient and family caregiver characteristics, and determine if any of the patient and family characteristics, including race/ethnicity, predicted outcomes. Cross-sectional surveys were used to determine sociodemographics, psychological and physical health, and burdens of caregiving among 54 caregivers. The analysis consisted of descriptive methods, including frequencies and t tests, and regression modeling. The sample was 35% African American or Hispanic. African American and Hispanic caregivers were younger than white caregivers and more often women, were rarely the spouse of the patient, and frequently had other dependents, including children and older parents. African American and Hispanic caregivers reported lower incomes and more burden related to finances and employment than did white caregivers. When controlling for sociodemographic factors, there was no difference by race/ethnicity on the outcome measures. The experience of caregiving may supersede race/ethnicity and may be its own cultural entity. Areas of concern include the interrelationship between socioeconomic status and race/ethnicity, the absence of cultural frameworks to direct caregiver research, and the question of cultural relevance of measurement tools.

Factors associated with depressive symptoms in cancer family caregivers of patients receiving chemotherapy

As cancer in the USA transitions to a disease trajectory similar to other chronic illnesses, care has moved to outpatient settings where patients and their families are responsible for day-to-day management and treatment-related side effects [1]. The family member or friend who assumes the role of caregiver has little opportunity to acclimate to their new responsibilities, personal response to the diagnosis, or the healthcare system [2]. The caregiver’s focus and the primary focus of treatment is the patient [3, 4]. Our understanding of cancer family caregivers’ needs and consequences has grown in recent years as more research has been directed toward this population [5, 6]. The physical and psychological impact of cancer family caregiving is significant with many associated negative outcomes including depression, anxiety, decreased quality of life, fatigue, sleep disturbance, pain, and decline in health status [7–10]. In some studies, cancer family caregivers were found to have worse psychological and quality of life outcomes than the patients for whom they cared [7, 11, 12]. Depression has been widely studied in cancer family caregivers. Several factors have been associated with increased risk of depression related both to the cancer family caregiver and the care recipient. Commonly reported associations include female gender, younger age, spousal relationship to care recipient, high perceived caregiver burden, high impact of caregiving on schedule and finances, familial conflict, poor patient performance status, a longer time since diagnosis, lung cancer diagnosis, and palliative treatment intent [13–20]. Many of these reports were generated from cancer caregiver research samples predominately composed of people of white race, female gender, and those caring for patients with a variety of cancers. As cancer treatment and prognosis have improved, the disease has begun to be reframed within the chronic illness model. The Institute of Medicine’s Cancer Control Continuum includes prevention, early detection, diagnosis, treatment, survivorship, and end of life [21]. These phases are marked by unique experiences for both patients and caregivers, often with distinct stressors and needs. Current caregiver literature does not include longitudinal assessment of the caregiver experience across all phases of the cancer trajectory; most longitudinal studies include few time points or short periods of data collection [7, 8, 13, 17]. Until longitudinal studies across the cancer trajectory exist, it is of value to focus research within distinct phases so as to capture aspects of the caregiver experience unique to particular phases [5]. Phasespecific research informs interventions designed to meet caregiver needs throughout the cancer trajectory and ultimately will help clinicians identify caregivers at high risk for untoward consequences and offer timely psychosocial support [22, 23]. The purpose of our secondary analysis was to describe levels of depressive symptoms among a cohort of cancer family caregivers during a specific phase along the cancer trajectory, namely, curative treatment, and identify how caregiver characteristics relate to caregiver depressive symptoms. Our study adds to the existing literature because of the relatively sizeable number of men represented, participation by those who identify as having Latino ethnicity, as well as restriction to caregivers for patients with lung or colon cancer receiving chemotherapy with curative intent. A. Williams (*) Frank H. Netter MD School of Medicine, Quinnipiac University, 275 Mount Carmel Road, Hamden, CT 06518, USA e-mail: anna-leila.williams@quinnipiac.edu

Barriers to Meditation by Gender and Age Among Cancer Family Caregivers

Background:Despite solid basic science research supporting meditation’s physiologic benefits, meditation remains a marginalized practice for many Westerners; observational and descriptive studies indicate a spectrum of barriers to meditation practice. Objective:The aim of this study was to determine differences in barriers to meditation by gender and age. Methods:A cross-sectional survey study of 150 family caregivers to adults with cancer visiting an outpatient chemotherapy center in Connecticut was conducted. The primary outcome was the Determinants of Meditation Practice Inventory. Explanatory variables included demographic characteristics, Center for Epidemiologic Studies-Depression Scale, Big Five Inventory, and Caregiver Reaction Assessment. Results:Participants included 98 women and 52 men. Age range was 18–84 years (M = 52.3 years). The highest frequency of barriers for both genders related to misconceptions about meditation. The total number of barriers to meditation did not significantly vary by gender (p = .10) nor age (p = .27). After adjusting for personality trait, reactions to caregiving, and emotional distress, gender (adjusted &bgr; = 0.81, SE = 1.70, p = .63) and age (adjusted &bgr; = 0.02, SE = 0.05, p = .67) still did not predict the number of barriers to meditation. Backward elimination in model building showed that personality trait and reactions to caregiving account for 32% of the variability in barriers. Discussion:The total number of barriers to meditation was examined, and a difference was not found by age or gender. It is possible that differences by age and gender exist at the item level of evaluation but were not evident when evaluating total scores. Further study is needed with samples large enough to have statistical power for item-level analysis.

Psychosocial Burden of Family Caregivers to Adults with Cancer

A person living with cancer will potentially have some degree of physical, cognitive, and/or psychological impairment, periods of unemployment, financial concerns, social isolation, and existential questions, any or all of which can impact the family and friends who surround them. In our current era of healthcare, patients with cancer receive invasive diagnostic studies and aggressive treatment as outpatients, and then convalesce at home. As such, cancer family caregivers are essential partners with the healthcare team. The intricacies of the cancer family caregiver role and responsibilities are demanding and may lead to increased morbidity and mortality-in effect, the cancer family caregiver can become a second patient in need of care. This chapter discusses the psychosocial burden of family caregivers to adults with cancer, and includes information on caregiver mood disturbance and psychological impairment and some of the mutable factors that contribute to these states (i.e., sleep disturbance, decline in physical health, and restriction of activities), uncertainty, spiritual concerns, and caregiver witnessing. There is a discussion of the factors that influence the caregiving experience (caregiver characteristics, patient characteristics, and social supports). The chapter concludes with comments on the state of caregiver research.

Cancer family caregiver depression: are religion‐related variables important?

Prevalence estimates for clinical depression among cancer family caregivers (CFC) range upwards to 39%. Research inconsistently reports risk for CFC depressive symptoms when evaluating age, gender, ethnicity, or length of time as caregiver. The discrepant findings, coupled with emerging literature indicating religiosity may mitigate depression in some populations, led us to investigate religion‐related variables to help predict CFC depressive symptoms.

Caring for a Loved One with Cancer: Professional and Family Issues

The evolution of the healthcare system over the past few decades has resulted in shorter hospital stays and greater numbers of invasive, out-patient procedures for most patients. This change in healthcare delivery has resulted in more family members being thrust into the role of caregiver.

Teaching evidence-based integrative medicine: description of a model programme

Complementary and alternative medicine is of great importance to the American public, yet often resisted by a conventional medical community unschooled in its methods. To provide the public with safe and unprejudiced access to all modes of health care, the integration of conventional and complementary care is needed. The Integrative Medicine Center at Griffin Hospital (Derby, Connecticut, USA) has implemented a unique model of integrative care in which allopathic and naturopathic providers base treatment recommendations on consensus. The centre is used as a training site for allopathic students and naturopathic residents; and, in conjunction with Yale’s Prevention Research Center, also provides training in research methods. Since its inception in 2000, three naturopathic residents have graduated and high patient satisfaction has been consistently achieved. The model described has the potential to advance the delivery of integrative care, train naturopathic practitioners in evidence-based methods, and create collaboration between allopathic and alternative providers.

Family Caregivers to Adults with Cancer: The Consequences of Caring

A person living with cancer will potentially have some degree of physical, cognitive, and/or psychological impairment, periods of unemployment, financial concerns, social isolation, and existential questions, any or all of which can impact the family and friends who surround them. In our current era of health care, patients with cancer receive invasive diagnostic studies and aggressive treatment as outpatients, and then convalesce at home. As such, cancer family caregivers are de facto partners with the healthcare team. The cancer family caregiver role is demanding and may lead to increased morbidity and mortality-in effect, the cancer family caregiver can become a second patient in need of care. This chapter discusses the consequences cancer family caregivers may accrue. The topics covered include caregiver mood disturbance and psychological impairment and some of the mutable factors that contribute to these states (i.e., sleep disturbance, decline in physical health, restriction of activities, and financial concerns), uncertainty, spiritual concerns, and caregiver witnessing. There is a discussion of the factors that influence the caregiving experience (caregiver characteristics, patient characteristics, and social supports). The chapter concludes with comments on intervention studies that have been conducted to ameliorate the burden of caregiving, and the state of caregiver research.