Many individuals, including dementia caregivers, use blogs to share their experiences. These blogs contain rich narratives representing an untapped resource for understanding the psychosocial impact of caring for a person with dementia at the family level. The present study used blogs written by caregivers of persons with dementia to explore how these individuals leveraged this medium as part of the caregiving experience. Blogs written by self-identified informal caregivers of persons with dementia were identified using a systematic search method, and data were analyzed using a qualitative thematic analysis. Four themes emerged from the narratives: social support through communication and engagement, information gathering and seeking, reminiscing and legacy building, and altruism. By understanding the ways in which individuals providing care for persons with dementia use social media as part of the caregiving experience, family nurses can develop interventions and services aimed at improving caregiver burden and quality of life.
Housing instability threatens the health and well-being of millions of families across the United States, yet little is known about the characteristics or housing trajectories of at-risk families. To address this gap in our understanding of family risk for housing instability and homelessness, we undertook a qualitative descriptive study utilizing a convenience sample of 16 mothers recruited from a housing service agency living in Detroit and receiving emergency services to avoid homelessness. Participants completed the Brief Patient Health Questionnaire (PHQ), then narrated their life events and reasons for housing instability and disclosed desired interventions for homelessness prevention. Data analysis reveals that women experienced high rates of previously undisclosed trauma, broken family relationships, early parenting responsibilities, social isolation, and system failures that contributed to recurrent episodes of housing instability. We argue that housing instability is a symptom of multiple chronic underlying issues that need more than a temporary financial patch.
Palliative and end-of-life care (PEOLC) in Mexican American (MA) caregiving families remains unexplored. Its onset was uncovered in our mixed methods, multisite, interdisciplinary, qualitative descriptive study of 116 caregivers, most of whom had provided long-term informal home care for chronically ill, disabled older family members. This subanalysis used Life Course Perspective to examine the "point of reckoning" in these families, where an older person is taken in for care, or care escalates until one recognizes oneself as the primary caregiver. Ninety-three of 116 caregivers recognized and spontaneously reported a "reckoning point" that initiated the caregiving trajectory, while eight cited "gradual decline" into caregiving for elders in their homes. This "reckoning point," which marks the assumption of this role, may afford a fertile opportunity for referral to community resources or initiation of formal PEOLC, thereby improving the quality of life for these older individuals and their families.
There has been a 2% to 3% increase in Type 1 diabetes (T1D) in children below 11 years old. Preteens (9-12 years old) with T1D are often overlooked regarding future diabetes self-management (DSM) expectations because parents are still in the "driver’s seat." The study purpose was to explore feasibility/ability to recruit and conduct a two-arm trial on reeducation, collaboration, and social support. One component of DSM was reviewed (hypoglycemia) with preteens (n = 22) and parents (n = 22). The experimental preteens discussed hypoglycemia management with a teen mentor and nurse educator using a human patient simulator for practice, and working collaboratively with parents. Concurrently, mothers met with a parent mentor and psychologist to discuss growth and development, and collaborative shared management. Comparison dyads discussed hypoglycemia management with a nurse. Preteens slightly improved in diabetes knowledge; the experimental arm had higher problem-solving scores. Parents in the experimental arm had higher self-efficacy scores. Findings will inform future research.
Parenting stress increases in the presence of serious-acute or chronic pediatric health conditions, potentially triggering negative outcomes for families. Parenting stress reduction interventions have been widely disseminated. The current review describes the types, components, and outcomes of these interventions in diverse pediatric populations. A systematic literature search yielded 26 experimental and quasi-experimental studies describing such interventions. Quality assessment was conducted by two doctorally prepared nursing researchers using the Downs and Black’s checklist for randomized and nonrandomized studies of health care interventions. Interventions were categorized as follows: interventions with supporting and cognitive components (n = 3), interventions with empowerment and skill development components (n = 18), interventions targeted to children’s condition (n = 9), and interventions focusing on the parent–child relationship (n = 5). Most interventions reduced immediate parenting stress levels (n = 23), but failed to demonstrate long-term gains. Future family interventions should target long-term parenting stress, while focusing on specific family needs across pediatric conditions.
Given the high symptom burden and low survivability of lung cancer, patients and their spouses have been found to experience poor mental health. The current study examined the roles of dyadic appraisal and dyadic coping on the mental health of 78 couples living with non-small cell lung cancer. Multilevel modeling revealed that spouses, on average, reported significantly worse mental health than patients. Dyadic appraisal and dyadic coping played important roles in predicting mental health, controlling for known developmental and contextual covariates. Dyadic appraisal of the patient’s pain and fatigue was significantly associated with spouse mental health, albeit in opposite directions. Dyadic coping significantly predicted patient mental health. The study underlines the need to incorporate routine screening of both patient and spouse mental health, and highlights the complex role of appraisal within the couple in a life-threatening context. Viewing the couple as a unit, rather than separate individuals, raises important awareness about the role of disparate illness appraisals and coping strategies within the dyad on the health of both members. Nurses are particularly well situated to engage in a collaborative family-focused approach to the couple with cancer that promotes communication and health.
This article is the third part of a hermeneutic research study examining the impact of childhood cancer experiences on the parental relationship. In Part 1, we offered an exploration of the phenomenon with background literature; a description of the research question, method, and design; and finally a discussion of relationships that survived, thrived, or demised, with an emphasis on the notions of difference and trading. In Part 2, we furthered the interpretations to look at the complexities of issues such as teams, roles, focus, protection, intimacy, grieving, putting relationships on hold, and reclaiming them. In this article, we discuss the advice that the participants offered us and how that advice might have implications for other parents in similar situations and health care professionals working with families experiencing childhood cancer.
In this Part 2 of a three-part research paper, we further our interpretations from our hermeneutic study examining how having a child who has experienced cancer had an impact on the relationship between the parents. In Part 1, we identified the focus of the study and provided background to the topic. We also described the research question, method, and design before offering an interpretive analysis of couples whose relationships survived, thrived, or demised. In this article, we extend the interpretations under an overarching theme of "taking one for the team." Here, we discuss issues of changes in focus and roles, and the notions of tag teaming, protection, intimacy, and grieving. We examine the phenomenon of putting relationships on hold, then finding reclamation later. In Part 3, we offer implications of these findings for other parents in similar situations and for health care professionals working with these families.
This article is the first of a three-part report of a research study that used hermeneutic inquiry to examine the effects of childhood cancer on the relationship between the parents of the child. In Part 1, we identity the topic of investigation and the relevant literature; describe the research question, method, and design; and begin our interpretations of the data with a focus on the couples who remained together and those who experienced relationship demise. In this analysis, we discovered that issues of difference and trading played a strong role in how the couples fared in their relationships. In Part 2 of this series, we focus on further interpretations, and in Part 3, we discuss the implications of the study for other parents and for health care professionals.
Much has been written about the global implementation of the Calgary Family Assessment and Intervention Models (CFAM/CFIM) and the application of these practice models in various clinical settings. The purpose of this article is to provide a brief update on the background of CFAM/CFIM, and the current applications of the models as evidenced in the English-language literature. Little has been written about the use of CFAM/CFIM in a personal context, however. As originators of the models, we offer our own narratives and reflections about the reciprocity between the personal and professional applications of our models and the ways that our personal experiences have extended our understanding about the utility of the models for clinical practice with families.
This article reports the development and preliminary testing of a new scale named "Partnership Scale for Primary Family Caregivers Caring for Patients With Dementia" that measures the ability of primary family caregivers to establish partnerships while providing care for patients with dementia in Japan. The first draft of the scale was developed using qualitative data from interviews with five primary family caregivers; a pool of 39 items was created through a review process with dementia care experts and researchers. An exploratory factor analysis and confirmatory factor analysis were conducted with data from 261 primary family caregivers who completed the instrument. This resulted in a multidimensional scale that consists of three factors with 13 items. The suitability of the model and intraclass correlation coefficient (ICC) values (1, 1) obtained by the test–retest method satisfied statistical standards. The criterion-related validity of the scale was significantly correlated to an external reference, which was the desired outcome. However, some subscales exhibited low internal consistency, demonstrating the need for further research.
There is a need for a suitable instrument for the Swedish context that could measure family members’ perceptions of cognitive and emotional support received from nurses. The purpose of this study was to translate and test the psychometric properties of the Swedish version of the Iceland-Family Perceived Support Questionnaire (ICE-FPSQ) and, further, to report perceptions of support from nurses by family members of children with congenital heart defects (CHDs). A sample of 97 parents of children with CHD, living in Sweden, completed the Swedish translation of ICE-FPSQ. The Swedish version of ICE-FPSQ was found to be reliable and valid in this context. Parents scored perceived family support provided by nurses working in pediatric outpatient clinics as low, which suggests that nurses in these outpatient contexts in Sweden offered family nursing only sparingly.
Individual behavior affects and is affected by other people. The aim of this study was to examine if emotional distress in patients with atrial fibrillation (AF) and their spouses was associated with their own and their partner’s perceived health. Participants included 91 dyads of patients and their spouses. Emotional distress was measured using the Hospital Anxiety and Depression Scale and perceived health was measured with the Short Form 36 Health Survey. The Actor–Partner Interdependence Model was used for dyad-level analyses of associations, using structural equation modeling. Higher levels of anxiety and depression were associated with lower levels of perceived health in patients and spouses. Higher levels of depression in patients were associated with lower levels of vitality in spouses and vice versa. As AF patients and their spouses influence each other, health-care interventions should consider the dyad to address dyadic dynamics. This may benefit the health of the individual patient and of the couple.
Caring culture is a concept embodying the perceptions and caring practices of caregivers, acknowledging the unique role of cultural beliefs in shaping behavior. A qualitative descriptive study with 13 caregivers of adult family members with a cancer diagnosis in Japan was conducted to gain insight into perceptions and experiences surrounding caregiving. Several major categories were identified, representing rarely reported cultural constructs of high cultural value for the Japanese: On—repayment for what the patient has given, Caregiving as performing a socially expected role, Enryo/meiwaku—restraint in asking for help, Family decision making reflecting strong bonds, Omoiyari—empathizing with the patient’s feelings, and Inori—praying to myriad gods and ancestors. The Japanese cultural construct of ie (the strong relationship to family lineage and spiritual connection to past and future generations) is helpful in understanding these categories. Invisible yet powerful cultural constructs permeated caregiving practices. Insights from Japanese cultural concepts and beliefs may foster sensitivity and individualized care in diverse settings, cultures, and societies.
Females currently make up 15% of U.S. military service members. Minimal attention has been paid to families of female National Guard members who have been deployed and their subsequent reintegration challenges. This cross-sectional Internet-based survey of female members of four National Guard units compared those who were and were not deployed. Instruments, guided by the variables of the Family Resilience Model, measured individual, family, and deployment-related factors. Bivariate analysis and ordinal logistic regression were done to assess differences between the groups. Of the 239 National Guard members surveyed, deployed women (n = 164) had significantly higher levels of posttraumatic stress disorder (PTSD; p < .001) and lower coping skills (p = .003) than non-deployed women (n = 75). Perceptions of overall family functioning were higher among deployed when compared with never deployed women. Results indicate community interventions that focus on strengthening coping skills of female Guard members would be useful for this population.
The purpose of this secondary analysis was to develop an enhanced understanding of the experiences of parents who have children in treatment for cancer. Data collected from 16 parents (12 mothers and 4 fathers) were analyzed using Frank’s dialogical narrative analysis. Findings demonstrated that parents’ experiences were represented in chaos, restitution, and quest narratives. Each of these narratives was only one instance of a very complex and changing parental experience that cannot be understood in isolation from the others. The holistic understanding provided by these findings contributes to a more comprehensive understanding of parental experiences of their child’s illness and highlights the need for health professionals to invite conversations about parents’ illness experience and attend to the specific narrative type parents are presenting to support them adequately. Additional research is required to develop supportive approaches for each narrative which takes into account the complexities of parents’ experiences.
This study described and contrasted family caregivers and explored the effect of gender and family relationship on the caregiver’s role perception, workload, burden, and family help. Home care agencies and community organizations assisted with the recruitment of 533 multicultural, predominantly Latino caregivers who were interviewed at home. The Caregiver Identity Theory guided the study. Survey instruments were standardized tools or were constructed and pretested for this study. Descriptive statistics and t-test analyses assisted in describing the sample, and multivariate analyses were used to contrast the caregiver groups. Findings suggested a gendered approach to self-appraisal and coping. Men in this predominantly Latino and Caribbean sample felt less burden and depression than women who believed caregiving is a female duty. Family nurses should pay attention to the most vulnerable groups—older spouses resistant to using family and community resources and hard-working female adult children—and assess each family situation individually.
The delivery of family centered care (FCC) occurs within varied pediatric care settings with a belief that this model of care meets the psychosocial, emotional, and physical needs of the hospitalized child and family. The aim of this review was to explore the attitudes, experiences, and implementation of FCC from many studies and to facilitate a wider and more thorough understanding of this practice from a diverse sample of parents, hospitalized children, and their health care providers within a pediatric critical care setting. A metasynthesis is an integration of qualitative research findings based on a systematic review of the literature. Thirty original research articles focusing on family-centered care experiences from the hospitalized child’s, parents’, and health care providers’ perception published between 1998 and 2011 met the criteria for the review. Nine syntheses from 17 themes emerged from the synthesis of the literature: Prehospital, Entry into the Hospital, Journeying Through Unknown Waters, Information, Relationships, The Hospital Environment, The Possibility of Death, Religion and Spirituality, and The Journey Home. The individual cultures of the critical care units helped create and reinforce the context of parental needs where satisfaction with communication, information, and relationships were interconnecting factors that helped maintain the positive or negative experiences for the parent, hospitalized child, and/or health care providers.
As a patient who has also been a family caregiver, I would like to offer my reflections on the concept of "patient and family centered care." How is it defined from a patient perspective? Why is it important? In what circumstances is it evident? And where is it lacking? I would like to leave the reader with a list of relatively small but, in my experience, powerful things that health care workers can do today to improve the patient and family experience.