ABSTRACT
Individuals with Alzheimer's disease and other forms of dementia (referred to as AD) deteriorate over time, and there will likely be a corresponding increase in levels of burden and stress for caregivers. Despite the significant contributions made by informal caregivers, there are no widely available mechanisms that meet the information needs of informal caregivers. Using a qualitative approach, the current study focuses on AD caregiver information seeking. The study involved conducting interviews to answer the following research questions: (1) What motivating factors lead informal caregivers of people with AD to seek out information?; (2) Is there a relationship between information seeking and resulting perceived stress levels?; and (3) Why do informal caregivers choose to utilize certain resources more than others during their information seeking process? Findings revealed that caregivers' largest motivation for seeking information is to learn how to better care for their loved one. Caregivers tend to rely on mediated resources that they find credible, and interpersonal resources such as people with similar experiences to their own. Many participants were satisfied with information available, but others felt that their interactions with healthcare professionals created more stress and emotional anguish than anticipated. This study offers an initial step in finding ways to meet the needs of those who seek to mitigate their stress through information seeking. By studying the information needs of the caregiving population, healthcare workers and communicators will be more knowledgeable about the relationship between information seeking and stress and coping.
Subject(s)
Alzheimer Disease , Caregivers , Adaptation, Psychological , Anxiety , Humans , Information Seeking BehaviorABSTRACT
OBJECTIVE: Family caregivers play a significant role in the diagnosis, treatment, and recovery of individuals with cancer. This position paper reviews and links the research on family caregiving and health information with the importance of cancer literacy. METHOD: Review of literature obtained through searching in Academic Search Premier, EBSCO, Communication and Mass Media Complete, PsychArticles, PsycInfo, and Health Source: Nursing/Academic Edition library databases. RESULTS: Family members are important sources of health information, informal caregivers who learn and enact medical procedures, and influential aspects of patients' healthcare and treatment decision-making, but are not seriously considered by healthcare practitioners or researchers in terms of assessing and improving health literacy. Further, very few studies have directly examined or acknowledged the potential importance of family caregiver health literacy. CONCLUSION: The extent to which family caregivers can comprehend the health information they receive along with the patient is crucial for the patient to achieve the most successful health outcome. PRACTICE IMPLICATIONS: To acknowledge the impact that family caregiver health literacy could have on patient health outcomes, targeted practical recommendations for understanding family caregiver health literacy in the cancer context are proposed: (1) family member health literacy should be assessed; (2) close relational partners should be trained as peer health educators; (3) written cancer information should be provided directly to family caregivers; (4) health interactions between family caregivers and patients should be improved; (5) theoretical perspectives into the understanding of family caregiver health literacy should be integrated into practice; and (6) patient and family caregiver health literacy should be improved.
Subject(s)
Caregivers/education , Family , Health Services Needs and Demand , Neoplasms/prevention & control , Patient Education as Topic/organization & administration , Caregivers/psychology , Communication , Decision Making , Educational Status , Family/psychology , Health Planning Guidelines , Health Status , Humans , Neoplasms/psychology , Nursing Assessment , Outcome Assessment, Health Care , Patient Acceptance of Health Care/psychology , Professional-Family Relations , RoleABSTRACT
The purpose of this study was to understand health information sources of individuals and families impacted by a cancer diagnosis. Overall, the findings support the Freimuth, Stein, and Kean (1989) model of health information acquisition. The cancer patients and family members who participated reported having significantly more health information along the continuum of cancer care, from causes to prevention, after a cancer diagnosis. Although a wide variety of interpersonal and mediated information sources are available, participants reported that the only consistently (88.1%) used source of information was doctors. The most important information sources were, in descending order, doctors, family members, nurses, friends, the Internet, other medical personnel, and other patients. Individuals, however, were most satisfied with family and friends as sources of information, followed by nurses, other patients, and doctors. Patients and family members rated the importance of and their satisfaction with various information sources differently. Patients rated nurses, other medical personnel, and support groups as more important than did family members, and patients were significantly more satisfied with doctors and nurses, whereas family members were significantly more satisfied with the Internet.
