Parent and adolescent perceptions of cystic fibrosis management responsibility: A mixed-methods study.

BACKGROUND: Adolescents with cystic fibrosis (CF) and their parents must navigate changing roles and responsibilities within the family including transfer of disease management responsibilities. AIM/OBJECTIVE: The aim of this qualitative study was to explore how families share and transfer CF management responsibility from the perspectives of adolescents with CF and their parents. METHODS: Guided by qualitative descriptive methodology, we purposively sampled adolescent/parent dyads. Participants completed two surveys measuring family responsibility (Family Responsibility Questionnaire [FRQ]) and transition readiness (Transition Readiness Assessment Questionnaire [TRAQ]) We conducted semistructured video or phone interviews, used a codebook to guide team coding and analyzed qualitative data using both content analysis and dyadic interview analysis. RESULTS: Thirty participants (15 dyads) enrolled (7% Black; 33% Latina/o; 40% female; adolescent age 14.4 ± 2 years; 66% prescribed highly effective modulator therapy; 80% of parents were mothers). Parent FRQ and TRAQ scores were significantly higher than their adolescent indicating differing perceptions of responsibility and transition readiness. We inductively identified four themes: (1) CF management is a delicate balance (CF management is a routine which is easily disrupted), (2) Growing up and parenting under extraordinary circumstances (the burden of CF weighs on families as they navigate adolescence), (3) Differing Perceptions of risk and responsibility (adolescent and parent perceptions of treatment responsibility and the risks of nonadherence do not always align), and (4) Balancing independence and protection (families must weigh the benefits and risks of allowing adolescents increased independence). CONCLUSIONS: Adolescents and parents demonstrated differing perceptions of CF management responsibility, which may be related to a lack of communication between family members about this topic. To help facilitate alignment of parent and adolescent expectations, discussion of family roles and responsibility for CF management should begin early during the transition process and be discussed regularly during clinic visits.

Women's Experiences of Symptoms of Suspected or Confirmed COVID-19 Illness During the Pandemic.

OBJECTIVE: To explore experiences of symptoms of suspected or confirmed COVID-19 illness among women using the CovidWatcher mobile citizen science app. DESIGN: Convergent parallel mixed-methods design. PARTICIPANTS: Twenty-eight self-identified women consented for follow-up after using CovidWatcher. Participants' ages ranged from 18 to 83 years old. METHODS: We collected data via semistructured, virtual interviews and surveys: the COVID-19 Exposure and Family Impact Survey and Patient-Reported Outcomes Measurement Information System measures. We used directed content analysis to develop codes, categories, themes, and subthemes from the qualitative data and summarized survey data with descriptive statistics. RESULTS: We derived five themes related to symptom experiences: (a) Physical Symptoms, (b) Mental Health Symptoms, (c) Symptom Intensity, (d) Symptom Burden, and (e) Symptom Trajectories. Subthemes reflected more nuanced experiences of suspected or confirmed COVID-19 disease. For those without COVID-19, anxiety and mental health symptoms were still present. Of those who attested to one of the PROMIS-measured symptoms, all but one had at least mild severity in one of their reported symptoms. CONCLUSION: This study demonstrates the cross-cutting impact of the COVID-19 pandemic on individuals who identify as women. Future research and clinical practice guidelines should focus on alleviating physical and mental health symptoms related to the ongoing pandemic, regardless of COVID-19 diagnosis. Furthermore, clinicians should consider how patients can use symptom reconciliation apps and tracking systems.

Do Interventions Improve Symptoms Among ICU Surrogates Facing End-of-Life Decisions? A Prognostically-Enriched Systematic Review and Meta-Analysis.

OBJECTIVES: Evaluate the efficacy of interventions to improve symptoms for ICU surrogates at highest risk of developing psychologic distress: those facing end-of-life care decisions. DATA SOURCES: MEDLINE, CINAHL, PsycInfo, Embase, Cochrane Central Register of Controlled Trials, and ClinicalTrials.gov were searched through April 16, 2022. STUDY SELECTION: Following an a priori protocol, randomized trials of interventions delivered to surrogates of adult ICU patients who died or had high likelihood of mortality evaluating surrogate symptoms were identified. DATA EXTRACTION: Two reviewers performed screening and data extraction and assessed risk of bias (Cochrane Risk of Bias [RoB] 2 tool). Trials were eligible for meta-analysis if group mean symptom scores were provided at 3 or 6 months. Pooled effects were estimated using a random effects model. Heterogeneity was assessed (Cochrane Q, I2 ). Certainty of evidence was assessed (Grading of Recommendations Assessment, Development and Evaluation). DATA SYNTHESIS: Of 1,660 records, 10 trials met inclusion criteria representing 3,824 surrogates; eight were included in the meta-analysis. Overall RoB was rated Some Concerns. Most ( n = 8) interventions focused on improving communication and enhancing psychologic support in the ICU. All trials measured anxiety, depression, and posttraumatic stress. Significant improvement was seen at 3 months (depression, mean difference [MD], -0.68; 95% CI, -1.14 to -0.22, moderate certainty; posttraumatic stress, standardized MD, -0.25; 95% CI, -0.49 to -0.01, very low certainty) and 6 months (anxiety, MD, -0.70; 95% CI, -1.18 to -0.22, moderate certainty). Sensitivity analyses suggest significant findings may be unstable. Subgroup analyses demonstrated differences in effect by trial location, interventionist, and intervention dose. CONCLUSIONS: Communication and psychological support interventions in the ICU yielded small but significant improvement in psychological symptoms with moderate to very low certainty evidence in a prognostically-enriched sample of ICU surrogates facing end-of-life care decisions. A new approach to interventions that extend beyond the ICU may be needed.

Gaps in transition readiness measurement: a comparison of instruments to a conceptual model.

Objectives: Measuring transition readiness is important when preparing young people with chronic illness for successful transition to adult care. The Expanded Socioecological Model of Adolescent and Young Adult Readiness to Transition (Expanded SMART) offers a holistic view of factors that influence transition readiness and outcomes. The aim of this study was to examine conceptual congruency of transition readiness instruments with the Expanded SMART to determine the breadth and frequency of constructs measured. Methods: PubMed was searched to identify observational and experimental studies that measured transition readiness across chronic illnesses. Selected instruments were first evaluated on their development and psychometric properties. Next, reviewers independently mapped each instrument item to Expanded SMART constructs: knowledge, skills/self-efficacy, relationships/communication, psychosocial/emotions, developmental maturity, beliefs/expectations, goals/motivation. If items did not map to a construct, a new construct was named inductively through group discussion. Results: Three instruments (TRAQ [20 items], STARx [18 items] and TRxANSITION Index [32 items]), reported in 74 studies, were identified. Across instruments, most items mapped to three constructs: skills/self-efficacy, developmental maturity, and knowledge. The psychosocial constructs of goals/motivation and psychosocial/emotions were underrepresented in the instruments. No instrument mapped to every model construct. Two new constructs: independent living and organization were identified. Conclusions: Constructs representing transition readiness in three frequently used transition readiness instruments vary considerably from Expanded SMART, a holistic conceptual model of transition readiness, suggesting that conceptualization and operationalization of transition readiness is not standardized. No instrument reflected all conceptual constructs of transition readiness and psychosocial constructs were underrepresented, suggesting that current instruments may provide an incomplete measurement of transition readiness.

Moving up: Healthcare transition experiences of adolescents and young adults with cystic fibrosis.

PURPOSE: The experience of healthcare transition from pediatric to adult care in cystic fibrosis (CF) remains poorly understood, particularly among racially and ethnically diverse adolescents and young adults (AYAs) with CF. The objective of this qualitative study was to explore the perspectives of a diverse sample of AYAs with CF at one urban academic medical center regarding healthcare transition. DESIGN AND METHODS: Guided by qualitative descriptive methodology, we purposively selected AYAs who represented the pre and post transition experience: some AYAs had experienced the transition preparation program CF R.I.S.E. Demographic information and responsibility for self-management behaviors were collected using an online survey. Semi-structured video interviews were conducted following an iterative interview guide. A codebook directed inductive coding. QSR NVivo Version 12 software was used to organize the data. RESULTS: 12 AYAs with CF were enrolled (25% female, 25% Black AYA, 33% Hispanic/Latina/o AYA, 50% White AYA; mean age 20.8 years). Three themes were identified: independent care of the whole self, preparing for change and the unknown and transition experiences vary. CONCLUSIONS: Not all participants experienced a smooth transition. Participants identified suggestions for the development of transition preparation interventions, specifically around involving AYAs in transition decisions and beginning transition preparation early in adolescence. PRACTICE IMPLICATIONS: Participants expressed uncertainty about transition when they felt little control over the process or lacked sufficient information about adult care. Therefore, comprehensive early transition preparation for all AYAs with CF with a focus on involving AYAs in transition decisions is recommended.