Struggling in the Dark to Help My Child: Parents' Experience in Caring for a Young Child with Juvenile Idiopathic Arthritis.

PURPOSE: The purpose of this study is to describe parents' experiences in caring for 2-5-year-old children with juvenile idiopathic arthritis (JIA). DESIGN AND METHODS: A qualitative study using single-occasion in-depth interviews was conducted. Nine parents (eight mothers and one father) were interviewed in-person or via telephone. Data were analyzed using inductive content analysis. Methods used to protect the trustworthiness of study results included maintenance of an audit trail, peer debriefing, and member checks. RESULTS: The core construct Struggling in the Dark to Help My Child explained parents' experience in six domains: not knowing, trying to reach out in the dark, feeling my child's pain, working out the kinks to stay on top to manage, feeling drained by the whole process, and being hard on the entire household. Parents struggled with the unknown, searched for resources, witnessed their child's suffering without knowing how to help, and tried every possible way to stay on top of the child's illness and treatment, even when they felt drained physically and emotionally. JIA not only consumed their lives, but also affected the entire family, including the siblings and spouse, and the relationships among family members. CONCLUSION AND IMPLICATIONS: Findings highlight the day-to-day lived challenges parents face when caring for a young child with JIA. Healthcare providers including nurses need to assess the particular needs of an ill child and parents as well as the impact of the illness on the physical and psychosocial health of the entire family so that proper resources can be provided.

The adolescent's experience when a parent has advanced cancer: A qualitative inquiry.

BACKGROUND: Parental cancer is a stressful experience for young people, constituting a potential threat to physical and mental health and normative development. Currently, there is insufficient information describing the sources and nature of this distress during advanced parental cancer, especially concerning families with adolescent children. AIM: To address the significant gap in the literature by providing the adolescent's perspective on the impact of their parent's advanced cancer on their lives. DESIGN: This qualitative study involved single-occasion, semi-structured elicitation interviews with adolescents whose parents were diagnosed with advanced stage cancer. SETTING/PARTICIPANTS: The study sample consisted of seven adolescents from six families, five females and two males ranging in age from 11 to 15 years (mean = 13.6 years, standard deviation = 1.4 years). The ill parents consisted of four females and two males diagnosed with Stage IV cancer. RESULTS: The core construct that organized study results was Weaving a Normal Life with Cancer which involved five major domains: feeling the weight of the world on my shoulders; cancer changes everything; confronting or getting away from the cancer; talking about it; and cancer was a positive for me … it taught me. CONCLUSION: Study findings shed light on how adolescents self-manage their parent's advanced cancer and work to delimit the illness even as they are aware of its constant presence. Future research and intervention studies are needed to support and add to the adolescents' self-management strategies to weave a normal life for themselves while in the throes of the cancer's uncertainty and challenges with family communication.

My family medical history and me: feasibility results of a cardiovascular risk reduction intervention.

OBJECTIVE: Evaluate the feasibility and acceptability of a behaviorally focused intervention designed to increase perceived cardiovascular disease (CVD) and coronary heart disease (CHD) risk in young adults with a family history (FH) of CVD/CHD. DESIGN AND SAMPLE: Single group, pre-post-test design. Fifteen, mostly female (n = 13, 86.7%), White, young adults (mean age 20.8 years) with a minimum of a high school education with a FH of CVD/CHD. MEASURES: Feasibility examined the recruitment strategy, study procedures, appropriateness and quality of the study instruments, and problems that occurred during delivery of the intervention. Acceptability examined participants' engagement in the in person sessions and at home exercises and their feedback about the intervention. INTERVENTION: Two, in person sessions provided personalized, tailored messages about 10-year and lifetime CHD risk based on risk factors, FH from a three-generation pedigree, lipid levels, blood pressure, and smoking status, and brief counseling about how to engage in a healthy lifestyle to decrease CVD/CHD risk. RESULTS: The intervention was feasible and acceptable. Participants requested more information on healthy food choices, including which foods to avoid and which exercises most improve cardiovascular health. CONCLUSIONS: Although requiring refinement, the intervention has potential public health implications and deserves further testing.

Cancer and the family: Variations by sex and race/ethnicity.

BACKGROUND: Cancer affects patients and their families, but few data are available on factors associated with diversity of family structures among patients with cancer. Family is a source of both support and responsibility that must be understood to support patients and their families. METHODS: Pooled data (2004-2015) from the National Health Interview Study were used to compare characteristics of cancer survivors with and without minor children and differences by sex and race/ethnicity among survivors with minor children. RESULTS: 13.9% of cancer survivors have minor children in the household, and this experience is more likely for women and people who identify as other than non-Hispanic White. CONCLUSION: There are considerable differences by sex and race/ethnicity in the characteristics of cancer survivors with minor children. Clinicians should make consideration of family circumstances a routine part of their history. Doing so will help to identify potential sources of support and responsibility that may affect adherence.

Content Validity of Parental Stressor Scale: Pediatric Intensive Care Unit (PSS:PICU).

Around 10% to 42% of parents suffer from post-traumatic stress disorder following child's Pediatric Intensive Care Unit (PICU) admission. What is needed is an understanding of factors associated with parental stress at the beginning of the PICU admission to guide strategies to prevent the development of stress-related morbidity. Only one measure exists to assess sources of PICU-related parental stress, the Parental Stressor Scale: Pediatric Intensive Care Unit (PSS:PICU). However, this scale has not been modified in over 30 years. The purpose of this study is to examine the content validity and descriptive statistics of the PSS:PICU, propose initial refinements of the scale based on interviews and quantitative analyses, and identify threats to validity in this measure using a convergent parallel mixed methods design. Three validity threats were identified: construct underrepresentation, construct-irrelevant variance, and item redundancy. Suggested scale refinements were to delete 17, revise 7, retain 15, and add 16 items for future testing.

Coming to grips with breast cancer: the spouse's experience with his wife's first six months.

This study examines the experiences of 48 spouses of wives newly diagnosed with local or regional breast cancer. Their reported experiences were organized into the core construct of coming to grips reflected by four domains: (1) feeling nailed by the breast cancer, (2) changing us, (3) taking care of me, and (4) making things work. Prior studies have underestimated the extent to which the assumptive world and day-to-day lives of spouses are shattered by the diagnosis of breast cancer and the work they do to guess how to be supportive to their wives. Interventions are needed that directly assist spouses add to their ways of managing the intrusion of their wife's breast cancer in their lives.

Walking on Eggshells: Parents' First Year After Their Adolescent Completes Their Cancer Treatment [Formula: see text].

Background: Despite an awareness that parents experience distress and heightened uncertainty at the end of their adolescent's treatment for cancer, little is known about the specific challenges and concerns parents hold for their adolescent survivors or how they manage these challenges. This study described challenges parents experience in the first year after their adolescent's cancer treatment and what parents did to manage those challenges. Method: Single occasion semistructured interviews were conducted with parents and were transcribed verbatim. Data were coded using inductive content analysis methods adapted from grounded theory. Results: Participants were 30 parents of adolescent survivors (13-18 years) who were in the first year following treatment completion. The core construct, "Walking on Eggshells," explained the processes and experiences parents faced once treatment was complete. Two additional domains captured how parents managed posttreatment challenges ("Doing What We Can") and the ways parents helped their adolescents adjust ("Balancing"). Conclusion: Study results suggest that services and materials are needed to help parents know common struggles that arise after treatment and ways to mitigate the severity of distress parents experience.

Trying to Feel Normal Again: Early Survivorship for Adolescent Cancer Survivors.

BACKGROUND: Despite knowing the potential medical consequences of cancer treatment, little is known about how adolescents cognitively and emotionally frame, process, and manage in the early survivorship period. OBJECTIVE: The specific aims were to describe the worries, perceived challenges, and ways of dealing with these issues for adolescent cancer survivors in the early period of survivorship. METHODS: Twenty-nine adolescent survivors (12-18 years) completed a semistructured interview. Inductive coding methods adapted from grounded theory were used to analyze the data. RESULTS: Seven domains and 18 categories organized the adolescent's experience with early posttreatment survivorship. The domains included getting back to school; relationships with parents, siblings, friends; feeling changed by the experience; and concerns about relapse. CONCLUSIONS: This study contributes to our understanding of survivors' relationships with parents, siblings, and friends and survivors' models of the illness. Future studies are needed to understand how parents can help adolescents assume greater responsibility for their care, to understand what it is like for friends to have a peer with cancer and what behaviors by healthcare providers contribute to feelings of abandonment later in survivorship, and to better understand adolescent survivors' models of the illness and survivorship. IMPLICATIONS FOR PRACTICE: Study results suggest that nurses are in an ideal position to begin and to continue discussions with adolescent survivors about the adolescent's view of medical follow- up, its purpose and importance, and ways in which the adolescent can begin, early on, to engage in planning their own health during survivorship.

"I Am a Good Example": Suggestions From HIV-Infected Cambodians for Preventing HIV Infection in Marital Relationships.

Developing effective and influential messages for HIV prevention in marriage has been difficult. We explored couple-based HIV prevention measures that would be socially and culturally suitable for Cambodia. Thirty in-depth qualitative interviews were conducted with people living with HIV in the local Khmer language. Using thematic analysis, codes and themes were generated to get to the meanings of participant data. Male and female suggestions were analyzed together, and four themes emerged: (a) Safer practices, (b) Trustworthy relationships, (c) Sexual variety, and (d) Exemplar. Premarital HIV testing, grooming oneself, sexual variety within a married relationship, monogamy, and sex education for teenagers were significant suggestions derived from participant input about protecting spouses from HIV infection. The explained strategies illustrated the importance of gender-based prevention programs in Cambodia and provided insight about needed and possible interventions to prevent HIV transmission within marriage.

Being Fully Present: Gains Patients Attribute to a Telephone-Delivered Parenting Program for Child-Rearing Mothers With Cancer.

BACKGROUND: Oncology nurses can assist patients in gaining skills and confidence in multiple areas of illness self-management, including parenting skills. Child-rearing parents with cancer are a unique population because they must self-manage their illness and also help their child manage the intrusion of cancer on everyday life. The telephone offers an inexpensive channel for nurses to assist mothers in developing competencies to parent their child. The acceptability and attributed gains from such telephone services are unknown. OBJECTIVE: The aims of this study were to (1) describe the gains child-rearing mothers attribute to participation in a nurse-delivered telephone cancer parenting program and (2) assess mothers' evaluation of the telephone as a channel for delivering the program. METHODS: Study participants were child-rearing mothers diagnosed with cancer (N = 31) who had completed a manualized telephone-delivered cancer parenting program by a nurse. Mothers were interviewed 1 month after exiting the program by a specially trained interviewer masked on the content of the program. RESULTS: Most mothers were white (74%), highly educated, and had breast cancer (93.5%). Mothers attributed gains from the program in 3 areas: (1) being fully present for my child, (2) communicating in new ways, and (3) putting away my assumptions. CONCLUSIONS: Communication skills learned from nurses can assist mothers to self-manage the impact of the cancer on their own well-being and add to their parenting skills and competencies to help their children. IMPLICATIONS FOR PRACTICE: The telephone is an effective and indeed preferred channel for delivering services to child-rearing parents impacted by cancer.

Pilot test of a home-based program to prevent perceived insufficient milk.

PROBLEM: Although the World Health Organization and American Academy of Pediatrics recommend exclusive breastfeeding for the first six months, only 22% of U.S. mothers do so. Mothers' perceived insufficient milk (PIM) is the primary reason for breastfeeding discontinuation globally. There are two changeable causes of PIM: (1) mothers' misinterpretation of their infant's behavior, and (2) mothers' lack of confidence in their ability to breastfeed. AIM: The purpose of this study was to evaluate the short-term effect of a home-based intervention designed to prevent and/or reduce PIM. METHODS: A mixed-methods, single-group, pretest-midtest-posttest design was used for evaluating a home-based breastfeeding program. The program was implemented during three 1.0- to 1.5-h home intervention sessions at 6, 13, and 27 days postpartum, delivered to 14 dyads of breastfeeding mothers and their full-term singleton infants. FINDINGS: We found significant increases over time in mothers' sensitivity to infant behavior and breastfeeding self-efficacy as well as significant decreased attribution of infant crying to PIM. Exit interviews indicated that the program was accepted by participating mothers. DISCUSSION: This is the first intervention study that has directly targeted the causes of PIM. The home-based intervention has the potential to add to maternal competencies both in correctly assessing their infants' behavior, thereby preventing erroneous attribution of infant behavior to PIM, as well as simultaneously bolstering maternal confidence in breastfeeding skills. CONCLUSION: By building maternal competencies, the home-based intervention has a longer-range potential to prevent breastfeeding discontinuation. Further evaluation is warranted.

Behavioral and Educational Interventions to Support Family Caregivers in End-of-Life Care: A Systematic Review.

The demand for family caregivers steadily increases as the number of people receiving hospice and palliative care rises. Family caregivers play a significant role in supporting their loved ones in end-of-life care. However, there is limited evidence about the effectiveness of the interventions for supporting family caregivers. This article synthesizes behavioral and educational interventions that support family caregivers in end-of-life care. A systematic review was conducted and searched interventional studies published between 2004 and 2014 in PubMed, CINAHL, Embase, and The Cochrane Library electronic databases. Fourteen studies were identified and analyzed: 4 educational studies, 6 cognitive behavioral therapy studies, and 4 psychoeducational studies. All educational and behavioral interventions had developed structures and treatment manuals and improved family caregivers' outcomes. The cognitive behavioral therapy resulted in more positive outcomes than the other 2 interventions. More rigorous randomized controlled trials are needed to replicate current effective interventions with larger and diverse sample. Future studies need to develop tools for assessing family caregivers' needs, create consistent and specific tools to effectively measure family caregivers' outcomes, incorporate a cost-effectiveness analysis, and find the most efficient intervention format and method.

Making the most of the moment: when a child's mother has breast cancer.

The demands and uncertainties associated with adjustments to chronic illness present challenges to maintaining a stable family life. Little has been reported about mother-child relationships within the cancer experience and even less about interventions that may be useful to help these dyads maintain stability. The focus of this article is a pilot study of an intervention addressing the mother-child relationship of women with breast cancer and their school-aged children. A part of the data collection comprised interviews of mothers and fathers to assess their perceptions of the influence of the intervention on the quality of the mother-child relationships after the program. Using inductive content analysis, the fathers' and mothers' data were organized into categories, domains, and an explanatory construct, called making the most of the moment. The processes by which the intervention affected the mother-child relationships and implications for professionals who work with families are reported.

Recruiting patients with breast cancer and their families to behavioral research in the post-HIPAA period.

PURPOSE/OBJECTIVES: To describe a process for, response rates of, and indicated interest in recruiting patients with breast cancer and their spouses and family members from a clinical setting into behavioral and psychiatric research studies since the Health Insurance Portability and Accountability Act (HIPAA) regulations have taken effect. DATA SOURCES: Published articles, books and book chapters, MEDLINE, government agency information and HIPAA regulatory Web sites, and survey data. DATA SYNTHESIS: Response rates among the three target groups--patients, spouses and partners, and female first-degree relatives--were 77%, 95%, and 88%, respectively. Interest was high in the three target groups, with 77%, 87%, and 65% of responding patients, spouses and partners, and female first-degree relatives, respectively. CONCLUSIONS: Taken together, these data indicate that high participation rates can be expected from patients with breast cancer and their families in clinical settings. IMPLICATIONS FOR NURSING: Regulations pose barriers to patient and family recruitment, but thoughtful systems actually can improve rates of recruitment.

Using the World Wide Web in health-related intervention research. A review of controlled trials.

A review of published controlled trials was conducted to evaluate components, utility, and efficacy of Web-based healthcare interventions. Nine studies met the established review criteria. Knowledge gains were the most commonly reported significant changes; rarely were there measures or significant changes on behavioral outcomes. Studies varied in format of personal contact with participants, in the structure or sequence of intervention content, and in design features. Dosage was inconsistently measured and process evaluation was relatively absent. Despite limitations, several studies reported significant effects. Based on best evidence-to-date, elements of technologically mediated interventions important to future research are summarized. Taken together, research suggests that Web-based interventions may be an efficacious delivery system, especially for those with chronic conditions amenable to self-management and to those with various limitations to accessing healthcare.

Effects of individual and family functioning on interest in genetic testing.

OBJECTIVE: The present study reports on the important issue of how family communication and support regarding breast cancer risk affects interest in genetic testing and mental health. METHODS: Participants (n = 221) were women aged 18-74 who had at least one relative of Ashkenazi Jewish descent, no personal history of breast or ovarian cancer, and lived within 60 miles of Seattle, Wash. RESULTS: Communication about breast cancer risk was reported with very low frequency across all types of relatives. Women talked with their mothers and sisters more often than their fathers, brothers, or children. The only significant predictor of interest in genetic testing was the individual level variable of seeking social support. CONCLUSION: Social support needs might be a part of the genetic testing process.