Investigation of patients' understanding of fibromyalgia: Results from an online qualitative survey.

OBJECTIVE: An important component to effective fibromyalgia treatment is patient education about the condition. While previous educational interventions have been developed, these have not incorporated the lived experiences of patients and may not address common misunderstandings among those who may benefit from these interventions. This study aimed to explore understanding, confusion, and gaps in knowledge about fibromyalgia among those who report a fibromyalgia diagnosis. METHODS: Participants were recruited via clinic flyers and the social media page of a chronic pain research laboratory. Participants completed an online survey that assessed their knowledge of fibromyalgia via open-ended questions. Responses were analyzed via thematic analysis to identify, analyze, and report themes. RESULTS: Thirty-eight participants completed the survey (63% female, ages 18-68). Common themes that arose from patients included being unsure of the cause of their fibromyalgia, frustration and confusion about the random/variable nature of symptoms and flares, feeling that their condition was invisible, and desiring more information on available treatments. CONCLUSION: Participants in this study expressed confusion about many aspects of fibromyalgia and a desire for more understanding from others in their life about this condition. PRACTICE IMPLICATIONS: Future interventions would benefit from tailoring fibromyalgia education to the specific knowledge and lived experiences of patients.

Psychosocial Functioning of Parents of Youth Receiving Intensive Interdisciplinary Pain Treatment.

OBJECTIVE: Parents of youth with chronic pain report psychosocial difficulties, yet treatment often focuses on improving their child's functioning and pain. This study evaluated changes in parents' social and emotional functioning and explored predictors of change, as they completed a parent-focused intervention while their child was enrolled in an intensive interdisciplinary pain treatment (IIPT) program. METHODS: Parents (n = 69) completed questionnaires at baseline and weekly (average duration of 4 weeks) during their child's participation in IIPT. Parents engaged in 3 groups per week providing education, therapeutic art, and psychotherapy (3 hr/week total). RESULTS: At baseline, 38% of parents reported scores in the clinically elevated range for at least 1 psychosocial variable. Linear mixed modeling for the full sample indicated reduced parent anxiety (t = -2.72, p <.01) and depression (t = -3.59, p <.001), but not increased emotional support (t = 1.86, p >. 05) or reduced social isolation (t = -1.20, p >.05). For parents with at least moderately elevated psychosocial concerns, statistically significant improvements were observed for all 4 outcomes (all p's<.01). Psychological flexibility, cognitive reappraisal, and emotional suppression were found to be related to changes in parent outcomes (anxiety, depression, isolation, and support). CONCLUSIONS: Findings support the benefit of parent-focused interventions in addition to child-focused interventions. Many parents of youth participating in IIPT had elevated scores for at least 1 psychosocial concern at baseline. Brief, parent-focused intervention including psychoeducation, therapeutic art, and psychotherapy targeting mindfulness, acceptance, and values had a significant impact on these parents, particularly those with greater struggles at baseline.

A Psychosocial Care Model for Families Affected by Congenital Heart Disease.

OBJECTIVES: To develop a model of family-based psychosocial care for congenital heart disease (CHD). DESIGN: Qualitative study using crowdsourced data collected from parents of young children with CHD who received care across 42 hospitals. SETTING: Yammer, a social networking platform used to facilitate online crowdsourcing and qualitative data collection. SUBJECTS: Geographically diverse sample of 100 parents (72 mothers and 28 fathers) of young children with CHD. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Parents joined a private group on Yammer and responded to 37 open-ended study questions over a 6-month period. Qualitative data were coded and analyzed using an iterative process. Three broad themes corresponding to pillars of family-based psychosocial care were identified: pillar 1) parent partnership in family-integrated medical care, pillar 2) supportive interactions focused on parent and family wellbeing, and pillar 3) integrated psychosocial care and peer support for parents and families. Each pillar was supported by subthemes corresponding to specific intervention strategies. Most parents described the need for intervention strategies across multiple pillars, with almost half reporting needs across all three pillars of psychosocial care. Parents' preferences for psychosocial support changed over time with changes to their child's medical status and across care settings (e.g., hospital, outpatient clinic). CONCLUSIONS: Results support a model of family-based psychosocial care that is multidimensional and flexible to meet the needs of families affected by CHD. All members of the healthcare team play an important role in providing psychosocial support. Future research incorporating components of implementation science is needed to promote uptake of these findings, with the goal of optimizing family-based psychosocial support in the hospital setting and beyond.

Barriers and facilitators to discussing parent mental health within child health care: Perspectives of parents raising a child with congenital heart disease.

This study aimed to identify barriers and facilitators to discussing parent mental health within child health care for parents of children with congenital heart disease (CHD). Seventy-nine parents of young children with CHD who received care across 40 hospitals in the United States responded to questions about barriers and facilitators to discussing their mental health with their child's health care providers. Responses were analyzed using qualitative research methods. Parents described multiple barriers: (1) belief that parent mental health support was outside the care team's scope of practice, (2) perceived expectation to "stay strong," (3) fear of negative judgment or repercussion, (4) individual preferences for communication/support, (5) desire to maintain care resources on their child, (6) perceived need to compartmentalize emotions, and (7) negative reactions to past emotional disclosure. Parents also described several facilitators: (1) confidence in the care team's ability to provide support, (2) intentional efforts by the care team to provide support, (3) naturally extroverted tendencies, and (4) developing personal connections with health care providers. It is important that health care providers normalize the impact of child illness on the family and create an environment in which parents feel comfortable discussing mental health challenges.

Meeting Parents' Needs for Education and Preparation following Congenital Heart Disease Diagnosis: Recommendations from a Crowdsourced Study.

OBJECTIVE: This article characterizes the educational needs of parents following fetal or neonatal congenital heart disease (CHD) diagnosis and generates recommendations for meeting these needs. STUDY DESIGN: Online crowdsourcing methods were used to collect qualitative data from 95 parents of children with CHD regarding their needs for education and preparation following fetal or neonatal diagnosis. Data were analyzed using qualitative methods and themes were organized around the substructure of met and unmet needs. RESULTS: Two themes represented consistently met needs, whereas 10 themes represented needs that were either inconsistently met or consistently unmet. Parents reported needing more information about social, emotional, and financial supports, preparation for long-term care, and guidance toward reputable online resources. Parents also provided recommendations for meeting these needs. CONCLUSION: Parents' needs for education and preparation following CHD diagnosis are much broader in scope than what they currently receive. Addressing these may support parental coping and active participation in medical decision-making. KEY POINTS: · CHD counseling after diagnosis may provide opportunities to promote parents' mental health.. · Guidelines recommend that this counseling should include emotional and decision-making support, however, it is unclear what parents actually receive.. · This study found that parents' needs for education and preparation following CHD diagnosis are much broader in scope than what they currently receive..

Parental post-traumatic stress, overprotective parenting, and emotional and behavioural problems for children with critical congenital heart disease.

OBJECTIVE: To examine relationships amongst parental post-traumatic stress symptoms, parental post-traumatic growth, overprotective parenting, and child emotional/behavioural problems in families of children with critical CHD. METHOD: Sixty parents (15 fathers) of children aged 1-6 completed online questionnaires assessing parental post-traumatic stress symptoms and post-traumatic growth, overprotective parenting, and child emotional/behavioural problems. Bivariate correlations and mediational analyses were conducted to evaluate overprotective parenting as a mediator of the association between parental post-traumatic stress symptoms and child emotional/behavioural problems. RESULTS: Parents reported significant post-traumatic stress symptoms, with over 18% meeting criteria for post-traumatic stress disorder and 70% meeting criteria in one or more clusters. Parental post-traumatic growth was positively correlated with intrusion (r = .32, p = .01) but it was not associated with other post-traumatic stress symptom clusters. Parental post-traumatic stress symptoms were positively associated with overprotective parenting (r = .37, p = .008) and total child emotional/behavioural problems (r = .29, p = .037). Overprotective parenting was positively associated with total child emotional/behavioural problems (r = .45, p = .001) and fully mediated the relationship between parental post-traumatic stress symptoms and child emotional/behavioural problems. CONCLUSION: Overprotective parenting mediates the relationship between parental post-traumatic stress symptoms and child emotional and behavioural problems in families of children with CHD. Both parental post-traumatic stress symptoms and overprotective parenting may be modifiable risk factors for poor child outcomes. This study highlights the need for interventions to prevent or reduce parental post-traumatic stress symptoms and to promote effective parenting following a diagnosis of CHD.

Development and initial evaluation of a multidimensional digital stress scale.

Digital stress is believed to play a role in the association between social media use and psychosocial outcomes. However, the literature is limited by a lack of measures that conform to published theoretical models of the construct. The present investigation details the development of a new multidimensional measure of digital stress. Based on an earlier conceptualization of Digital Stress (Steele et al., 2020), Study 1 identified items from extant measures of digital stress, conducted a qualitative review of the literature to compose new items, and conducted focus groups with young adults and adolescents (N = 23) to improve item wording and interpretation. Study 2 conducted an exploratory factor analysis (EFA) of items with a young adult sample (N = 247) collected online, yielding support for four hypothesized factors (i.e., availability stress, approval anxiety, fear of missing out [FoMO], and connection overload) plus one unanticipated factor (i.e., online vigilance). In Study 3, college students (N = 174) completed paper-and-pencil surveys, and EFA results showed a similar structure as detected in Study 2. In Study 4, confirmatory factor analysis examining the five-factor model was conducted on data from adolescents (N = 163) and college students (N = 152). These procedures yielded 24 items measuring 5 components of digital stress: availability stress, approval anxiety, FoMO, connection overload, and online vigilance. Associations between digital stress and psychosocial distress and functioning are reported to demonstrate convergent and divergent validity. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Topical Review: Crowdsourcing as a Novel Approach to Qualitative Research.

OBJECTIVE: To describe a novel, five-phase approach to collecting qualitative data from hard-to-reach populations using crowdsourcing methods. METHODS: Drawing from experiences across recent studies with type 1 diabetes and congenital heart disease stakeholders, we describe five phases of crowdsourcing methodology, an innovative approach to conducting qualitative research within an online environment, and discuss relevant practical and ethical issues. RESULTS: Phases of crowdsourcing methodology are: (I) Preparing; (II) Forming Crowds; (III) Collecting Crowdsourced Data; (IV) Coding and Analyzing Crowdsourced Data; and (V) Generating and Disseminating Findings. Iterative feedback from stakeholders is obtained in all five phases. Practical and ethical issues include accessing diverse stakeholders, emotional engagement of crowd participants, responsiveness and transparency of crowdsourcing methodology, and limited personal contact with crowd participants. CONCLUSIONS: Crowdsourcing is an innovative, efficient, feasible, and timely approach to engaging hard-to-reach populations in qualitative research.

Supporting parenting during infant hospitalisation for CHD.

OBJECTIVE: To characterise the parenting priorities of mothers and fathers of infants hospitalised with CHD and generate recommendations to support parenting during infant hospitalisation. STUDY DESIGN: Through online crowdsourcing, an innovative research methodology to create an online community to serve as a research sample, 79 parents of young children with CHD responded to questions about parenting during hospitalisation via private social networking site. Responses were analysed using qualitative research methods. RESULTS: Three broad themes were identified: (1) establishing a bond with my baby, (2) asserting the parental role, and (3) coping with fear and uncertainty. Parents value provider support in restoring normalcy to the parenting experience during infant hospitalisation. CONCLUSIONS: Care teams can support parenting during infant hospitalisation by promoting parents' roles as primary caretakers and decision-makers and attending to the emotional impact of infant hospitalisation on the family.

Fathers of Children With Congenital Heart Disease: Sources of Stress and Opportunities for Intervention.

OBJECTIVES: To examine sources of stress for fathers of children with congenital heart disease and opportunities for intervention to prevent or reduce paternal mental health problems. DESIGN: Qualitative study using online crowdsourcing, an innovative research methodology to create an online community to serve as a research sample. SETTING: Yammer, an online social networking site. SUBJECTS: Geographically diverse sample of 70 parents (25 fathers and 45 mothers) of young children with congenital heart disease. INTERVENTIONS: Participants joined a private group on Yammer and responded to 37 open-ended study questions over a 6-month period. Qualitative data were coded and analyzed using an iterative process, and themes regarding sources of stress for fathers of children with congenital heart disease and opportunities for intervention were identified. MEASUREMENTS AND MAIN RESULTS: Four broad themes regarding sources of stress for fathers of children with congenital heart disease emerged from the qualitative data from both mothers and fathers: societal expectations for fatherhood and standards of masculinity, balancing work and family responsibilities, feeling overlooked as a partner in care, and lack of father supports. To begin to address these sources of stress, participants recommended that care teams acknowledge and normalize the impact of congenital heart disease on fathers, provide support for balancing work and family responsibilities, recognize and promote father knowledge and engagement, and provide formal and informal supports for fathers of children with congential heart disease. CONCLUSIONS: Fathers of children with congenital heart disease experience unique sources of stress in the absence of targeted interventions to meet their needs. Care teams play an important role in acknowledging the experiences of fathers and including and engaging fathers in care.

Conceptualizing Digital Stress in Adolescents and Young Adults: Toward the Development of an Empirically Based Model.

Existing literature provides a complicated picture of the relationship between digital media use and psychological outcomes. Both correlational and some experimental studies suggest that social media use specifically can be associated with diminished psychological functioning in adolescents and young adults. However, these effect sizes are not large, and must be considered in light of studies that suggest some positive outcomes associated with some uses of digital media, and a range of moderators of the identified associations. Although a growing body of evidence suggests that digital stress may be an important intervening factor between digital media use and psychosocial outcomes, this literature is complicated by multiple nomenclatures for similar or identical constructs. Our review of the literature suggests four potentially related components of digital stress, including availability stress, approval anxiety, fear of missing out, and communication overload. This conceptualization is consistent with recent published frameworks for understanding digital media's influence on peer relationships. Clinicians working with adolescents and young adults are encouraged to assess digital media use in the context of clients' overall psychological and social functioning, and in consideration of clients' specific uses of media. Future research is needed to examine the associations among components of digital stress and clinical outcomes, and to provide valid measures to assess digital stress in research and clinical settings.

Family consequences of potentially traumatic pediatric medical events: Implications for trauma-informed care.

Extensive research demonstrates that pediatric medical events can be traumatic for patients, caregivers, and siblings, but the aftereffects of these potentially traumatic events for the family and its members are not well documented. Through focus groups with patients, caregivers, and siblings, this qualitative study examined the perceived consequences of potentially traumatic medical events for individual family members and the family as a whole. Sixteen focus groups (6 caregiver, 5 patient, 5 sibling) were conducted. Participants included 44 caregivers, 24 patients, and 14 siblings from 28 families with children treated in cardiology, endocrinology, oncology, orthopedics, or pulmonology. Constant-comparison and directed-content analysis were used to analyze the resulting data. Six themes regarding the family consequences of potentially traumatic medical events emerged: (a) family members experience strong emotional reactions and distressing thoughts, (b) family members experience trauma-related reactions and behaviors, (c) family patterns and routines change, (d) family conflict arises, (e) family members feel different from their peers and strive for normalcy, and (f) family members construct positive narratives about these events and experience positive consequences and emotions. These findings reveal the consequences of potentially traumatic medical events that extend beyond traumatic stress symptoms. Moreover, the impact of these consequences is seen within both individual family member responses and responses within the family system as a whole. Understanding both individual- and family-level consequences of medical events is important in order to provide family-centered, trauma-informed care for children with illness or injury and their family members. (PsycINFO Database Record (c) 2020 APA, all rights reserved).

Technology-Focused Family Interventions in Pediatric Chronic Illness: A Systematic Review.

This systematic review provides a synthesis of randomized-controlled trials of technology-focused family interventions for children with chronic illnesses and their families, focused on describing the current state of the literature and generating recommendations for future family systems work in the field of eHealth/mHealth. Twenty-three studies met inclusion criteria and were included in the systematic review. No identified studies featured an mHealth delivery modality. Relevant data were extracted and studies were assessed for quality. There was great variability with regard to intervention factors (e.g., format) and family-centered intervention targets. There is some evidence that eHealth interventions may lead to improvements in particular domains of family functioning (e.g., family conflict) for some groups of participants. However, mixed results and selection of numerous different intervention targets by investigators make it challenging to draw summative conclusions about the overall effectiveness of family systems eHealth interventions. Future research should move beyond feasibility/acceptability studies and examine family-centered processes as primary outcomes. Future research should also consider novel intervention formats to determine whether intervention effects are more robust for certain groups (e.g., individuals who prefer electronic intervention delivery to in-person intervention).

Integrating play in trauma-informed care: Multidisciplinary pediatric healthcare provider perspectives.

Children and their family members may experience potentially traumatic events during medical treatment that can result in pediatric medical traumatic stress reactions. Play is a normative part of childhood that may facilitate engagement in medical care and may be incorporated in trauma-informed care. This qualitative study used semistructured interviews to examine the role of play and its potential use in trauma-informed care. The perspectives of 30 multidisciplinary pediatric healthcare providers representing 5 divisions (Cardiology, Endocrinology, Oncology, Orthopedics, Pulmonology) in 2 children's hospitals were gathered. Constant comparison and directed content analysis were used to analyze the data. Themes and subthemes were derived in 3 areas: (a) aspects of pediatric medical care that are potentially traumatic (specific events; and physical, emotional, and family-level consequences), (b) uses of play in pediatric healthcare settings (general [relieve boredom] and trauma-specific [prevention/alleviation]), and (c) potential barriers to the use of play in trauma-informed care (infection control; lack of provider training). The results document aspects of pediatric medical experiences that providers recognize as potentially traumatic, highlighting the importance of trauma-informed care. They also identify ways to use play to engage with children and families in a trauma-informed way. Additional training and development regarding play may increase the viability of using play in trauma-informed pediatric healthcare. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Consideration of Insulin Pumps or Continuous Glucose Monitors by Adolescents With Type 1 Diabetes and Their Parents: Stakeholder Engagement in the Design of Web-Based Decision Aids.

PURPOSE: This article describes the stakeholder-driven design, development, and testing of web-based, multimedia decision aids for youth with type 1 diabetes who are considering the insulin pump or continuous glucose monitoring and their parents. This is the initial phase of work designed to develop and evaluate the efficacy of these decision aids in promoting improved decision-making engagement with use of a selected device. METHODS: Qualitative interviews of 36 parents and adolescents who had previously faced these decisions and 12 health care providers defined the content, format and structure of the decision aids. Experts in children's health media helped the research team to plan, create, and refine multimedia content and its presentation. A web development firm helped organize the content into a user-friendly interface and enabled tracking of decision aid utilization. Throughout, members of the research team, adolescents, parents, and 3 expert consultants offered perspectives about the website content, structure, and function until the design was complete. RESULTS: With the decision aid websites completed, the next phase of the project is a randomized controlled trial of usual clinical practice alone or augmented by use of the decision aid websites. CONCLUSIONS: Stakeholder-driven development of multimedia, web-based decision aids requires meticulous attention to detail but can yield exceptional resources for adolescents and parents contemplating major changes to their diabetes regimens.

Systematic Review: A Reevaluation and Update of the Integrative (Trajectory) Model of Pediatric Medical Traumatic Stress.

OBJECTIVE: The objective of this systematic review is to reevaluate and update the Integrative Model of Pediatric Medical Traumatic Stress (PMTS; Kazak et al., 2006), which provides a conceptual framework for traumatic stress responses across pediatric illnesses and injuries. METHODS: Using established systematic review guidelines, we searched PsycINFO, Cumulative Index to Nursing and Allied Health Literature, and PubMed (producing 216 PMTS papers published since 2005), extracted findings for review, and organized and interpreted findings within the Integrative Model framework. RESULTS: Recent PMTS research has included additional pediatric populations, used advanced longitudinal modeling techniques, clarified relations between parent and child PMTS, and considered effects of PMTS on health outcomes. Results support and extend the model's five assumptions, and suggest a sixth assumption related to health outcomes and PMTS. CONCLUSIONS: Based on new evidence, the renamed Integrative Trajectory Model includes phases corresponding with medical events, adds family-centered trajectories, reaffirms a competency-based framework, and suggests updated assessment and intervention implications.

Psychosocial Assessment as a Standard of Care in Pediatric Cancer.

This paper presents the evidence for a standard of care for psychosocial assessment in pediatric cancer. An interdisciplinary group of investigators utilized EBSCO, PubMed, PsycINFO, Ovid, and Google Scholar search databases, focusing on five areas: youth/family psychosocial adjustment, family resources, family/social support, previous history/premorbid functioning, and family structure/function. Descriptive quantitative studies, systematic reviews, and meta-analyses (n = 149) were reviewed and evaluated using grading of recommendations, assessment development, and evaluation (GRADE) criteria. There is high quality evidence to support a strong recommendation for multifaceted, systematic assessments of psychosocial health care needs of youth with cancer and their families as a standard of care in pediatric oncology.