User-Centered Development of HEARTPrep, a Digital Health Psychosocial Intervention for Prenatally Diagnosed Congenital Heart Disease.
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ABSTRACT:
SUBMITTER: Sood E
PROVIDER: S-EPMC10898312 | biostudies-literature | 2024
REPOSITORIES: biostudies-literature
Publications
User-Centered Development of HEARTPrep, a Digital Health Psychosocial Intervention for Prenatally Diagnosed Congenital Heart Disease.
Sood Erica E Canter Kimberly S KS Battisti Steven S Nees Shannon N SN Srivastava Shubhika S Munoz Osorio Angel A Feinson Judith J Gallo Adrienne A Jung Sean S Riegel Erin E Ng Stephanie S Kazak Anne E AE
Journal of patient experience 20240226
User-centered models for the development of digital health interventions are not consistently applied in healthcare settings. This study used a five-phase, user-centered approach to develop HEARTPrep<sup>©</sup>, a psychosocial intervention delivered via mobile app and telehealth to mothers expecting a baby with congenital heart disease (CHD) to promote maternal, family, and child well-being. Phases of intervention development were: (I) establishing partnerships; (II) creating content; (III) dev ...[more]
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Project description:Prenatal diagnosis of congenital heart disease (CHD) often leads to anxiety, depression, and traumatic stress in expectant mothers, with long-term implications for the child and family. However, psychosocial intervention is rarely incorporated into prenatal care. HEARTPrep is a virtually delivered psychosocial intervention aimed at reducing distress and social isolation and increasing parenting self-efficacy and hope for mothers expecting a baby with CHD to promote long-term child/family well-being. This study evaluated the feasibility and acceptability of HEARTPrep. Participants were mothers receiving cardiology care for a fetal CHD diagnosis. Partners could participate with the mother. HEARTPrep was delivered through a mobile app and telehealth. Feasibility was assessed through enrollment/retention rates. Acceptability was assessed through 20 Likert-scale and five open-ended questions. Of 39 recruited mothers, 35 (90%) enrolled. Half of partners (48%) also participated. Twenty-seven of 35 enrolled mothers (77%) completed HEARTPrep. On a scale from 0 (Not at All) to 4 (Very), mean item acceptability scores ranged from 3.5 to 3.9. Mothers reported HEARTPrep helped them feel less distressed (mean: 3.74), less alone (3.84), more prepared (3.89), and more hopeful (3.84). Opportunities to process emotions, develop coping skills, learn with their partner, navigate relationships, understand they are not alone, connect with peer support, access resources, and prepare for stressors were described as helpful. HEARTPrep is feasible and acceptable for mothers expecting a baby with CHD. Future research will evaluate its efficacy in preventing/reducing maternal mental health problems and improving postnatal clinical outcomes.
| S-EPMC10758983 | biostudies-literature
Project description:Input from diverse stakeholders is critical to the process of designing healthcare interventions. This study applied a novel mixed-methods, stakeholder-engaged approach to co-design a psychosocial intervention for mothers expecting a baby with congenital heart disease (CHD) and their partners to promote family wellbeing. The research team included parents and clinicians from 8 health systems. Participants were 41 diverse parents of children with prenatally diagnosed CHD across the 8 health systems. Qualitative data were collected through online crowdsourcing and quantitative data were collected through electronic surveys to inform intervention co-design. Phases of intervention co-design were: (I) Engage stakeholders in selection of intervention goals/outcomes; (II) Engage stakeholders in selection of intervention elements; (III) Obtain stakeholder input to increase intervention uptake/utility; (IV) Obtain stakeholder input on aspects of intervention design; and (V) Obtain stakeholder input on selection of outcome measures. Parent participants anticipated the resulting intervention, HEARTPrep, would be acceptable, useful, and feasible for parents expecting a baby with CHD. This model of intervention co-design could be used for the development of healthcare interventions across chronic diseases.
| S-EPMC9039438 | biostudies-literature
Project description:Importance:Parents who receive a prenatal diagnosis of congenital heart disease may experience more short- and long-term stress than those who receive a postnatal diagnosis. To identify potential interventions to ameliorate that stress, the longitudinal emotional experience of parents must first be understood. Objective:To better understand parents' accounts of their own prenatal experience, particularly aspects they found to be stressful or challenging, and to identify strategies to improve support. Design, Setting, and Participants:This qualitative study included analysis of transcripts of audio recorded telephone interviews with pregnant mothers and their support persons, as applicable, who were referred to and seen at the Fetal Cardiology Clinic at Vanderbilt Children's Hospital from May 2019 to August 2019 with an initial likely diagnosis of complex congenital heart disease at any gestational age. Data analysis was conducted from August 2019 to November 2019. Main Outcomes and Measures:An applied thematic analysis approach was used to code and analyze professionally transcribed interviews. Coding and codebook revisions occurred iteratively; intercoder reliability was assessed and confirmed routinely. One author coded all transcripts; a second author independently reviewed one-fifth of the transcripts at fixed intervals to ensure that interrater reliability remained greater than 80%. Results:Twenty-seven individuals from 17 families participated in 42 phone interviews during pregnancy, 27 conducted at the first time point after the initial prenatal cardiology consultation and 15 at the second time point after a follow-up prenatal cardiology visit. Most interviewees were mothers (16 interviewees [59%]; median [interquartile range] age, 30.0 [27.3-34.8] years) or fathers (8 interviewees [30%)], with a few support individuals (3 interviewees [11%]) (median [interquartile range] age of family member or support individual, 30.0 [26.0-42.0] years). Initial fetal diagnoses included a range of severe congenital heart disease. Uncertainty was identified as a pervasive central theme and was related both to concrete questions on scheduling, logistics, or next steps, and long-term unknown variables concerning the definitiveness of the diagnosis or overall prognosis. Practitioners helped families through their framing of uncertainty at various time points including before, during, and after the clinic visit. Conclusions and Relevance:Families walk an uncertain path following a fetal diagnosis of severe congenital heart disease. The challenges faced by the cardiologists caring for them overlap in many ways with those experienced by pediatric palliative care practitioners. Potential future interventions to improve parental support were identified in the areas of expectation setting before the referral visit, communication in clinic, and identity formation after the new diagnosis.
| S-EPMC7201310 | biostudies-literature
Project description:ObjectiveTo investigate the prevalence of extracardiac anomalies (ECA) in prenatally diagnosed congenital heart diseases (CHD), and to provide more information for counseling of women with prenatally diagnosed fetal CHD.MethodsThis was a retrospective cohort study of 791 cases of fetal CHD diagnosed by prenatal ultrasound from January 2005 to April 2018. Associated ECAs included extracardiac structural malformation (ECM), chromosomal anomaly, and 22q11.2 microdeletion. CHD was classified into 10 groups according to a modified anatomic and clinical classification of congenital heart defects.ResultsThe overall prevalence of ECA in our CHD cohort was 28.6% (226/791): ECM, 25.3%; chromosomal anomaly, 11.7%; and 22q11.2 microdeletion, 5.5%. For those with ECM, ventricular septal defect (VSD) had the highest prevalence (34.5%), followed by anomalies of atrioventricular junctions and valves (28.8%) and heterotaxy (26.9%). For those with chromosomal anomaly, anomalies of atrioventricular junctions and valves had the highest prevalence (37.5%), followed by anomalies of atria and interatrial communications (25.0%) and VSD (22.9%). 22q11.2 microdeletion was detected only in those with anomalies of extrapericardial arterial trunks (14.3%) or ventricular outflow tracts (6.4%).ConclusionECM, chromosomal anomaly, and 22q11.2 microdeletion have different prevalence according to the type of CHD.
| S-EPMC7971844 | biostudies-literature
Project description:Congenital structural heart disease (CHD) is the leading cause of infant death from birth defects. Postnatal survival primarily depends on the type and severity of the defect. In addition, worse cardiac prognosis is observed when extra-cardiac anomalies (ECA) are associated. This retrospective chart review was aimed at finding markers for short-term outcome prediction of prenatally-diagnosed complex CHD, focusing in particular on the impact of CHD category, of CHD severity score and of prenatal or postnatal diagnosis of ECA or chromosomal anomalies on 4 primary outcomes: termination of pregnancy (TOP), intrauterine fetal demise, neonatal mortality and 1-year-survival rate. We reviewed medical files from 381 fetuses, presenting at our center between 2018 and 2021 with CHD for which prenatal advice by a pediatric cardiologist was sought. 341 fetuses met the inclusion criteria for the study. Twin pregnancies (7.62%; OR 4.76 (p < 0.001)) and pregnancies resulting from assisted reproductive technology (7.33%; OR 2.44 (p < 0.001)) were more prevalent compared to the general population. CHD categories and CHD severity scores, ranging from A (extremely high risk based on CHD or ECA type) to D (low risk), were assigned to each fetus. Prenatal or postnatal chromosomal microarray results were available for 232 fetuses (68%) and were abnormal in 30 (12.9%). Logistic regression analysis was used to determine significant predictors for the primary outcomes 'TOP', 'postnatal demise before the age of 1 month' and 'survival at the age of 1 year'. TOP was carried out significantly more with: prenatal genetic diagnosis, severity score A and severity score B. Interestingly, a prenatal genetic diagnosis was negatively correlated with pregnancy continuation, but it was not a significant predictor for postnatal mortality, while a postnatal diagnosis of a genetic disorder impacted early but not late postnatal mortality. In addition, postnatal mortality both before the age of 1 month or before the age of 1 year was significantly associated with lower postmenstrual age at birth, CHD severity score B and major ECA at birth. These results underscore the importance of genotyping and of accurate cardiac and extracardiac phenotyping for prognostication in fetuses with CHD.
| S-EPMC11785992 | biostudies-literature
Project description:BackgroundThe exact onset of brain injury in infants with congenital heart disease (CHD) is unknown. Our aim was, therefore, to assess the association between prenatal Doppler flow patterns, postnatal cerebral oxygenation and short-term neurological outcome.MethodsPrenatally, we measured pulsatility indices of the middle cerebral (MCA-PI) and umbilical artery (UA-PI) and calculated cerebroplacental ratio (CPR). After birth, cerebral oxygen saturation (rcSO2) and fractional tissue oxygen extraction (FTOE) were assessed during the first 3 days after birth, and during and for 24 hours after every surgical procedure within the first 3 months after birth. Neurological outcome was determined preoperatively and at 3 months of age by assessing general movements and calculating the Motor Optimality Score (MOS).ResultsThirty-six infants were included. MOS at 3 months was associated with MCA-PI (rho 0.41, P = 0.04), UA-PI (rho -0.39, P = 0.047, and CPR (rho 0.50, P = 0.01). Infants with abnormal MOS had lower MCA-PI (P = 0.02) and CPR (P = 0.01) and higher UA-PI at the last measurement (P = 0.03) before birth. In infants with abnormal MOS, rcSO2 tended to be lower during the first 3 days after birth, and FTOE was significantly higher on the second day after birth (P = 0.04). Intraoperative and postoperative rcSO2 and FTOE were not associated with short-term neurological outcome.ConclusionIn infants with prenatally diagnosed CHD, the prenatal period may play an important role in developmental outcome. Additional research is needed to clarify the relationship between preoperative, intra-operative and postoperative cerebral oxygenation and developmental outcome in infants with prenatally diagnosed CHD.
| S-EPMC7094875 | biostudies-literature
Project description:Long-term admissions in psychiatric facilities often result in a gradual erosion of the identity of people diagnosed with severe mental illnesses (SMIs) into merely "patient." Moreover, experiences of loss often reduced people's sense of purpose. Although regaining a multidimensional identity and a sense of purpose are essential for personal recovery, few interventions specifically address this, while at the same time take people's often considerable cognitive and communicative disabilities into consideration. This study describes the development process of a new intervention through user-centered design (UCD). UCD is an iterative process in which a product (in this case, an intervention) is developed in close cooperation with future users, such that the final product matches their needs. The design process included three phases: an analysis, design, and evaluation phase. In the analysis phase, the "problem" was defined, users' needs were identified, and design criteria were established. In the design phase, the collected information served as input to create a testable prototype using a process of design and redesign, in close collaboration with service users and other stakeholders. This resulted in an intervention entitled "This is Me" (TiM) in which service users, together with a self-chosen teammate, actively engage in new experiences on which they are prompted to reflect. Finally, in the evaluation phase, TiM was implemented and evaluated in a real-life setting. In a small feasibility pilot, we found indications that some people indeed demonstrated increased reflection on their identity during the intervention. Furthermore, TiM seemed to benefit the relationship between the service users and the mental health professionals with whom they underwent the experiences. The pilot also revealed some aspects of the (implementation of) TiM that can be improved. Overall, we conclude that UCD is a useful method for the development of a new psychosocial intervention. The method additionally increased our knowledge about necessary factors in targeting personal recovery for people with complex mental health needs. Moreover, we conclude that TiM is a promising tool for supporting people with SMI in redeveloping a multidimensional identity and a renewed sense of purpose.
| S-EPMC8060492 | biostudies-literature
Project description:BackgroundAdolescents diagnosed with persistent asthma commonly take less than 50% of their prescribed inhaled corticosteroids (ICS), placing them at risk for asthma-related morbidity. Adolescents' difficulties with adherence occur in the context of normative developmental changes (eg, increased responsibility for disease management) and rely upon still developing self-regulation and problem-solving skills that are integral for asthma self-management. We developed an adaptive mobile health system, Responsive Asthma Care for Teens (ReACT), that facilitates self-regulation and problem-solving skills during times when adolescents' objectively measured ICS adherence data indicate suboptimal rates of medication use.ObjectiveThe current paper describes our user-centered and evidence-based design process in developing ReACT. We explain how we leveraged a combination of individual interviews, national crowdsourced feedback, and an advisory board comprised of target users to develop the intervention content.MethodsWe developed ReACT over a 15-month period using one-on-one interviews with target ReACT users (n=20), national crowdsourcing (n=257), and an advisory board (n=4) to refine content. Participants included 13-17-year-olds with asthma and their caregivers. A total of 280 adolescents and their caregivers participated in at least one stage of ReACT development.ResultsConsistent with self-regulation theory, adolescents identified a variety of salient intrapersonal (eg, forgetfulness, mood) and external (eg, changes in routine) barriers to ICS use during individual interviews. Adolescents viewed the majority of ReACT intervention content (514/555 messages, 93%) favorably during the crowdsourcing phase, and the advisory board helped to refine the content that did not receive favorable feedback during crowdsourcing. Additionally, the advisory board provided suggestions for improving additional components of ReACT (eg, videos, message flow).ConclusionsReACT involved stakeholders via qualitative approaches and crowdsourcing throughout the creation and refinement of intervention content. The feedback we received from participants largely supported ReACT's emphasis on providing adaptive and personalized intervention content to facilitate self-regulation and problem-solving skills, and the research team successfully completed the recommended refinements to the intervention content during the iterative development process.
| S-EPMC7240449 | biostudies-literature
Project description:BackgroundOlder migrant patients with cancer face many language- and culture-related barriers to patient participation during medical consultations. To bridge these barriers, an eHealth tool called Health Communicator was developed in the Netherlands. Essentially used as a digital translator that can collect medical history information from patients, the Health Communicator did not include an oncological module so far, despite the fact that the prevalence of Dutch migrant patients with cancer is rising.ObjectiveThis study aims to systematically develop, implement, and conduct a pilot evaluation of an oncological module that can be integrated into the Health Communicator to stimulate patient participation among older Turkish-Dutch and Moroccan-Dutch patients with cancer.MethodsThe Spiral Technology Action Research model, which incorporates 5 cycles that engage key stakeholders in intervention development, was used as a framework. The listen phase consisted of a needs assessment. The plan phase consisted of developing the content of the oncological module, namely the question prompt lists (QPLs) and scripts for patient education videos. On the basis of pretests in the do phase, 6 audiovisual QPLs on patient rights, treatment, psychosocial support, lifestyle and access to health care services, patient preferences, and clinical trials were created. Additionally, 5 patient education videos were created about patient rights, psychosocial support, clinical trials, and patient-professional communication. In the study phase, the oncological module was pilot-tested among 27 older Turkish-Dutch and Moroccan-Dutch patients with cancer during their consultations. In the act phase, the oncological model was disseminated to practice.ResultsThe patient rights QPL was chosen most often during the pilot testing in the study phase. Patients and health care professionals perceived the QPLs as easy to understand and useful. There was a negative correlation between the tool's ease of use and patient age. Patients reported that using the module impacted the consultations positively and thought they were more active compared with previous consultations. Health care professionals also found patients to be more active than usual. Health care professionals asked significantly more questions than patients during consultations. Patients requested to see the patients' rights video most often. Patients rated the videos as easy to understand, useful, and informative. Most of the patients wanted to use the tool in the future.ConclusionsOlder migrant patients with cancer, survivors, and health care professionals found the oncological module to be a useful tool and have shown intentions to incorporate it into future consultation sessions. Both QPLs and videos were evaluated positively, the latter indicating that the use of narratives to inform older, low-literate migrant patients with cancer about health-related topics in their mother tongue is a viable approach to increase the effectiveness of health care communication with this target group.
| S-EPMC7652697 | biostudies-literature
Project description:BackgroundBipolar disorder is a serious mental illness that results in significant morbidity and mortality. Pharmacotherapy is the primary treatment for bipolar disorder; however, adjunctive psychotherapy can help individuals use self-management strategies to improve outcomes. Yet access to this therapy is limited. Smartphones and other technologies have the potential to increase access to therapeutic strategies that enhance self-management while simultaneously providing real-time user feedback and provider alerts to augment care.ObjectiveThis paper describes the user-centered development of LiveWell, a smartphone-based self-management intervention for bipolar disorder, to contribute to and support the ongoing improvement and dissemination of technology-based mental health interventions.MethodsIndividuals with bipolar disorder first participated in a field trial of a simple smartphone app for self-monitoring of behavioral targets. To develop a complete technology-based intervention for bipolar disorder, this field trial was followed by design sessions, usability testing, and a pilot study of a smartphone-based self-management intervention for bipolar disorder. Throughout all phases of development, intervention revisions were made based on user feedback.ResultsThe core of the LiveWell intervention consists of a daily self-monitoring tool, the Daily Check-in. This self-monitoring tool underwent multiple revisions during the user-centered development process. Daily Check-in mood and thought rating scales were collapsed into a single wellness rating scale to accommodate user development of personalized scale anchors. These anchors are meant to assist users in identifying early warning signs and symptoms of impending episodes to take action based on personalized plans. When users identified personal anchors for the wellness scale, the anchors most commonly reflected behavioral signs and symptoms (40%), followed by cognitive (25%), mood (15%), physical (10%), and motivational (7%) signs and symptoms. Changes to the Daily Check-in were also made to help users distinguish between getting adequate sleep and keeping a regular routine. At the end of the pilot study, users reported that the Daily Check-in made them more aware of early warning signs and symptoms and how much they were sleeping. Users also reported that they liked personalizing their anchors and plans and felt this process was useful. Users experienced some difficulties with developing, tracking, and achieving target goals. Users also did not consistently follow up with app recommendations to contact providers when Daily Check-in data suggested they needed additional assistance. As a result, the human support roles for the technology were expanded beyond app use support to include support for self-management and clinical care communication. The development of these human support roles was aided by feedback on the technology's usability from the users and the coaches who provided the human support.ConclusionsUser input guided the development of intervention content, technology, and coaching support for LiveWell. Users valued the provision of monitoring tools and the ability to personalize plans for staying well, supporting the role of monitoring and personalization as important features of digital mental health technologies. Users also valued human support of the technology in the form of a coach, and user difficulties with aspects of self-management and care-provider communication led to an expansion of the coach's support roles. Obtaining feedback from both users and coaches played an important role in the development of both the LiveWell technology and human support. Attention to all stakeholders involved in the use of mental health technologies is essential for optimizing intervention development.
| S-EPMC8076988 | biostudies-literature