BackgroundLongitudinal qualitative research methods can add depth and understanding to health care research, especially on topics such as chronic conditions, adherence and changing health policies. In this manuscript we describe when and how to undertake two different applied approaches to analyzing longitudinal qualitative data: a recurrent cross-sectional approach and a trajectory approach.ResultsA recurrent cross-sectional approach is most appropriate when the primary interest is comparing two time points, such as before and after a policy change, or when a cohort cannot be maintained, such as a study in which some participants are expected to die. In contrast, a trajectory approach is most appropriate when the purpose of the research is to understand individuals’ experiences over time or to understand longitudinal healthcare processes.ConclusionsLongitudinal qualitative research has the potential to be a powerful approach to understanding the complexities of health care: from relationships between providers and patients, to the experience of chronic disease, to the impact of health policy. Such research will be strengthened by careful consideration of the research question at hand, followed by application of the appropriate analytic approach.

Background With the increasing complexity of decisions in pediatric medicine, there is a growing need to understand the pediatric decision-making process. Objective To conduct a narrative review of the current research on parent decision making about pediatric treatments and identify areas in need of further investigation. Methods Articles presenting original research on parent decision making were identified from MEDLINE (1966–6/2011), using the terms “decision making,” “parent,” and “child.” We included papers focused on treatment decisions but excluded those focused on information disclosure to children, vaccination, and research participation decisions. Results We found 55 papers describing 52 distinct studies, the majority being descriptive, qualitative studies of the decision-making process, with very limited assessment of decision outcomes. Although parents’ preferences for degree of participation in pediatric decision making vary, most are interested in sharing the decision with the provider. In addition to the provider, parents are influenced in their decision making by changes in their child’s health status, other community members, prior knowledge, and personal factors, such as emotions and faith. Parents struggle to balance these influences as well as to know when to include their child in decision making. Conclusions Current research demonstrates a diversity of influences on parent decision making and parent decision preferences; however, little is known about decision outcomes or interventions to improve outcomes. Further investigation, using prospective methods, is needed in order to understand how to support parents through the difficult treatment decisions.

Objective Shared Decision-Making (SDM), an integrative patient-provider communication process emphasizing discussion of scientific evidence and patient/family values, may improve quality care delivery, promote evidence-based practice, and reduce overuse of surgical care. Little is known however regarding SDM in elective surgical practice. The purpose of this systematic review is to synthesize findings of studies evaluating use and outcomes of SDM in elective surgery. Data Sources Pubmed, CochraneCENTRAL, EMBASE, CINAHL, and SCOPUS electronic databases Review Methods We searched for English-language studies (1/1/1990 to 8/9/2015) evaluating use of SDM in elective surgical care. Identified studies were independently screened by two reviewers in stages of title/abstract and full-text review. We abstracted data related to population, study design, clinical dilemma, use of SDM, outcomes, treatment choice, and bias. Results Of 10,929 identified articles, 24 met inclusion criteria. The most common area studied was spine (7/24) followed by joint (5/24) and gynecological surgery (4/24). Twenty studies used decision aids/support tools, including modalities that were multimedia/video (13/20), written (3/20), or personal coaching (4/20). Effect of SDM on preference for surgery were mixed across studies, showing a decrease in surgery (9/24), no difference (8/24), or increase (1/24). SDM tended to improve decision quality (3/3) as well as knowledge/preparation (4/6), while decreasing decision conflict (4/6). Conclusion SDM reduces decision conflict and improves decision quality for patients making choices about elective surgery. While net findings show that SDM may influence patients to choose surgery less often, the impact of SDM on surgical utilization cannot be clearly ascertained.

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The decision-making experience, and associated information seeking, leaves some parents with long-lasting concerns and worry about TNFαi treatment. Providing parents with structured decision-making support may lead to more effective and efficient decision making, decreased psychosocial distress, and, ultimately, improved outcomes for their children.

Objective To use observation to understand how decisions about higher-risk treatments, such as biologics, are made in pediatric chronic conditions. Methods Gastroenterology and rheumatology providers who prescribe biologics were recruited. Families were recruited when they had an outpatient appointment in which treatment with biologics was likely to be discussed. Consent/assent was obtained to video the visit. Audio of the visits in which a discussion of biologics took place were transcribed and analyzed. Our coding structure was based on prior research, shared decision-making concepts, and the initial recorded visits. Coded data were analyzed using content analysis and comparison with an existing model of shared decision making. Results We recorded 21 visits that included discussions of biologics. In most visits, providers initiated the decision making discussion. Detailed information was typically given about the provider’s preferred option with less information about other options. There was minimal elicitation of preferences, treatment goals or prior knowledge. Few parents or patients spontaneously stated their preferences or concerns. An implicit or explicit treatment recommendation was given in nearly all visits, although rarely requested. In approximately 1/3 of visits the treatment decision was never made explicit, yet steps were taken to implement the provider’s preferred treatment. Conclusion We observed limited use of shared decision making, despite previous research indicating that parents wish to collaborate in decision making. To better achieve shared decision making in chronic conditions, providers and families need to strive for bidirectional sharing of information and an explicit family role in decision making.

Evidence indicates the benefits of early treatment of SCID and the possibility of population-based newborn screening. Better information on optimal treatment and the costs of treatment and screening would benefit policy makers deciding among competing health care priorities.

Objective To compare factors considered by parents to those considered by adolescents making decisions about chronic disease treatments.Methods We conducted individual interviews with 15 parent-adolescent dyads in which the adolescent had either juvenile idiopathic arthritis or Crohn's disease. Questions focused on treatment decisions, with an emphasis on the factors that influenced each individual's preferences related to biologic therapies. A multidisciplinary team developed a coding structure. All interviews were coded by two people with disagreements resolved through discussion. We used content analysis and coding matrices to examine decision factors within and between parent-adolescent dyads.Results Parents and adolescents both participated in decisions about treatment with biologic therapies but considered decision factors differently. In only half of cases did parents and adolescents agree on the factor that most influenced their decision. Although their decision factors often fell into similar categories (e.g. treatment risks, quality of life), in many cases the specifics varied between adolescents and their parents. Adolescents were more likely to focus on immediate treatment effects and quality of life while parents took a longer term view of the decision. Agreement within dyads was most consistent when a special circumstance influenced the treatment decision.Conclusions Differences regarding influential decision factors exist within parent-adolescent dyads. Continued research is needed to determine the extent to which such differences are due to individual preferences or to variations in the information available to each person. Future decision support interventions will need to address parents' and adolescents' potentially disparate views and information needs.