Understanding Women Veterans' Family Planning Counseling Experiences and Preferences to Inform Patient-Centered Care.

BACKGROUND: Women veterans' unique experiences in the military and burden of health comorbidities increase their risk of adverse pregnancy outcomes and may influence their counseling needs related to planning or preventing pregnancy. We investigated women veterans' experiences of family planning counseling in the military and Veterans Affairs (VA) health care systems as well as their counseling preferences. METHODS: We conducted 32 qualitative interviews among women veterans ages 18-44 years receiving primary care at the VA Puget Sound or VA Pittsburgh health care systems between March and June 2016 to explore their experiences and preferences related to counseling about pregnancy goals and planning and contraception. Transcripts were analyzed using inductive and deductive content analysis, and key themes were identified. RESULTS: Nearly all participants described negative experiences in family planning counseling encounters in the military and/or VA, including perceptions of gender-based discrimination and pressure to choose certain contraceptive methods, perceived judgment of their reproductive choices, and a lack of continuity with providers. Some women also reported positive experiences in family planning encounters in the VA, including feeling respected, receiving comprehensive information about options, and having their perspectives and concerns elicited. Counseling preferences that emerged included that providers initiate and validate family planning discussions, establish trust and avoid judgment, elicit women's individual preferences, and engage them as equal partners in decision making. CONCLUSIONS: Women veterans reported a spectrum of negative and positive experiences in family planning encounters in the military and VA that, in conjunction with their preferences, provide key insights for patient-centered reproductive health care in VA.

Emotional Impact of Illness and Care on Patients with Advanced Kidney Disease.

BACKGROUND AND OBJECTIVES: The highly specialized and technologically focused approach to care inherent to many health systems can adversely affect patients' emotional experiences of illness, while also obscuring these effects from the clinician's view. We describe what we learned from patients with advanced kidney disease about the emotional impact of illness and care. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: As part of an ongoing study on advance care planning, we conducted semistructured interviews at the VA Puget Sound Healthcare System in Seattle, Washington, with 27 patients with advanced kidney disease between April of 2014 and May of 2016. Of these, ten (37%) were receiving center hemodialysis, five (19%) were receiving peritoneal dialysis, and 12 (44%) had an eGFR≤20 ml/min per 1.73 m2 and had not started dialysis. Interviews were audiotaped, transcribed, and analyzed inductively using grounded theory methods. RESULTS: We here describe three emergent themes related to patients' emotional experiences of care and illness: (1) emotional impact of interactions with individual providers: when providers seemed to lack insight into the patient's experience of illness and treatment, this could engender a sense of mistrust, abandonment, isolation, and/or alienation; (2) emotional impact of encounters with the health care system: just as they could be affected emotionally by interactions with individual providers, patients could also be affected by how care was organized, which could similarly lead to feelings of mistrust, abandonment, isolation, and/or alienation; and (3) emotional impact of meaning-making: patients struggled to make sense of their illness experience, worked to apportion blame, and were often quick to blame themselves and to assume that their illness could have been prevented. CONCLUSIONS: Interactions with individual providers and with the wider health system coupled with patients' own struggles to make meaning of their illness can take a large emotional toll. A deeper appreciation of patients' emotional experiences may offer important opportunities to improve care.

"Maybe They Don't Even Know That I Exist": Challenges Faced by Family Members and Friends of Patients with Advanced Kidney Disease.

BACKGROUND AND OBJECTIVES: Family members and friends of patients with advanced chronic illness are increasingly called on to assist with ever more complex medical care and treatment decisions arising late in the course of illness. Our goal was to learn about the experiences of family members and friends of patients with advanced kidney disease. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: As part of a study intended to identify opportunities to enhance advance care planning, we conducted semistructured interviews at the Veterans Affairs Puget Sound Health Care System with 17 family members and friends of patients with advanced kidney disease. Interviews were conducted between April of 2014 and May of 2016 and were audiotaped, transcribed, and analyzed inductively using grounded theory to identify emergent themes. RESULTS: The following three themes emerged from interviews with patients' family members and friends: (1) their roles in care and planning were fluid over the course of the patient's illness, shaped by the patients' changing needs and their readiness to involve those close to them; (2) their involvement in patients' care was strongly shaped by health care system needs. Family and friends described filling gaps left by the health care system and how their involvement in care and decision-making was at times constrained and at other times expected by providers, depending on system needs; and (3) they described multiple sources of tension and conflict in their interactions with patients and the health care system, including instances of being pitted against the patient. CONCLUSIONS: Interviews with family members and friends of patients with advanced kidney disease provide a window on the complex dynamics shaping their engagement in patients' care, and highlight the potential value of offering opportunities for engagement throughout the course of illness.

Provider Perspectives on Advance Care Planning for Patients with Kidney Disease: Whose Job Is It Anyway?

BACKGROUND AND OBJECTIVES: There is growing interest in efforts to enhance advance care planning for patients with kidney disease. Our goal was to elicit the perspectives on advance care planning of multidisciplinary providers who care for patients with advanced kidney disease. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Between April and December of 2014, we conducted semistructured interviews at the Department of Veterans Affairs Puget Sound Health Care System with 26 providers from a range of disciplines and specialties who care for patients with advanced kidney disease. Participants were asked about their perspectives and experiences related to advance care planning in this population. Interviews were audiotaped, transcribed, and analyzed inductively using grounded theory. RESULTS: The comments of providers interviewed for this study spoke to significant system-level barriers to supporting the process of advance care planning for patients with advanced kidney disease. We identified four overlapping themes: (1) medical care for this population is complex and fragmented across settings and providers and over time; (2) lack of a shared understanding and vision of advance care planning and its relationship with other aspects of care, such as dialysis decision making; (3) unclear locus of responsibility and authority for advance care planning; and (4) lack of active collaboration and communication around advance care planning among different providers caring for the same patients. CONCLUSIONS: The comments of providers who care for patients with advanced kidney disease spotlight both the need for and the challenges to interdisciplinary collaboration around advance care planning for this population. Systematic efforts at a variety of organizational levels will likely be needed to support teamwork around advance care planning among the different providers who care for patients with advanced kidney disease.

Characteristics and well-being of informal caregivers: Results from a nationally-representative US survey.

OBJECTIVES: Given ongoing concerns about high levels of burden reported among some informal caregivers, the goal of this study was to characterize their sociodemographics, health, and well-being. METHODS: Using cross-sectional data from a large nationally representative survey in the United States (N = 438,712) we identified adults who provided informal care to friends or family members with a health problem, long-term illness, or disability. Descriptive statistics and propensity matching were used to characterize caregivers and compare their health and social support to sociodemographically-similar adults who were not caregivers. Logistic regression models examined associations between caregiving and respondents' mental health, general health, perceived social support, and sleep problems. RESULTS: A total of 111,156 (25.3%) participants reported being caregivers, most of whom reported good mental health (90%) good general health (83%), and adequate social support (77%). After adjusting for respondents' gender, caregivers reported worse mental health than non-caregivers (odds ratio (OR) = 1.35, 95% confidence interval (CI) = 1.31-1.39 for >15 days poor mental health in the past month) but better general health (OR = 0.96, 95%CI = 0.94-0.98 for fair or poor health). Men caregivers reported somewhat worse overall health than non-caregivers (OR = 1.09, 95%CI = 1.05-1.13) whereas women reported better overall health. DISCUSSION: Although reporting good overall well-being, caregivers remain vulnerable for worse outcomes than non-caregivers. Caregiving is associated with poor mental health, and may have additional impacts on the physical health of caregiving men.

Recruitment and retention rates in behavioral trials involving patients and a support person: a systematic review.

BACKGROUND: Recruitment and retention challenges impede the study of behavioral interventions among patient-support person dyads. PURPOSE: The aim of the study was to characterize recruitment and retention rates of behavioral interventions involving dyads. METHODS: Using PRISMA guidelines and with the guidance of a medical librarian, we searched Medline, EMBASE, Cochrane Controlled Trials, PsycInfo, and CINAHL from inception until July 2011. Eligible articles involved RCTs of behavioral interventions targeting adult patients with a non-psychiatric illness and a support person. Sample and study characteristics, recruitment and retention strategies, and recruitment and retention rates were abstracted in duplicate. Quality of reporting was determined on a 5-point scale. Due to the heterogeneity in data reporting and missing data, a narrative synthesis was undertaken. RESULTS: 53 unique studies involving 8081 dyads were included. 9 studies were ascertained to have a "high quality" of reporting. A majority of the studies did not report target sample size, time to complete recruitment, and sample sizes at each follow-up time point. Strategies employed to recruit support persons were rarely reported. 16 studies did not report the number of dyads screened. The mean recruitment rate was 51.2% (range: 4.3%-95.4%), and mean retention rate was 77.5% (range: 36%-100%). CONCLUSIONS: Details regarding recruitment and retention methodology were sparse in these interventions. Where available, data suggests that resources need to be devoted towards recruitment of sample but that retention rates are generally adequate.