Talking numbers: how women and providers use risk scores during and after risk counseling - a qualitative investigation from the NRG Oncology/NSABP DMP-1 study.

OBJECTIVES: Little research exists on how risk scores are used in counselling. We examined (a) how Breast Cancer Risk Assessment Tool (BCRAT) scores are presented during counselling; (b) how women react and (c) discuss them afterwards. DESIGN: Consultations were video-recorded and participants were interviewed after the consultation as part of the NRG Oncology/National Surgical Adjuvant Breast and Bowel Project Decision-Making Project 1 (NSABP DMP-1). SETTING: Two NSABP DMP-1 breast cancer care centres in the USA: one large comprehensive cancer centre serving a high-risk population and an academic safety-net medical centre in an urban setting. PARTICIPANTS: Thirty women evaluated for breast cancer risk and their counselling providers were included. METHODS: Participants who were identified as at increased risk of breast cancer were recruited to participate in qualitative study with a video-recorded consultation and subsequent semi-structured interview that included giving feedback and input after viewing their own consultation. Consultation videos were summarised jointly and inductively as a team.tThe interview material was searched deductively for text segments that contained the inductively derived themes related to risk assessment. Subgroup analysis according to demographic variables such as age and Gail score were conducted, investigating reactions to risk scores and contrasting and comparing them with the pertinent video analysis data. From this, four descriptive categories of reactions to risk scores emerged. The descriptive categories were clearly defined after 19 interviews; all 30 interviews fit principally into one of the four descriptive categories. RESULTS: Risk scores were individualised and given meaning by providers through: (a) presenting thresholds, (b) making comparisons and (c) emphasising or minimising the calculated risk. The risk score information elicited little reaction from participants during consultations, though some added to, agreed with or qualified the provider's information. During interviews, participants reacted to the numbers in four primary ways: (a) engaging easily with numbers; (b) expressing greater anxiety after discussing the risk score; (c) accepting the risk score and (d) not talking about the risk score. CONCLUSIONS: Our study highlights the necessity that patients' experiences must be understood and put into relation to risk assessment information to become a meaningful treatment decision-making tool, for instance by categorising patients' information engagement into types. TRIAL REGISTRATION NUMBER: NCT01399359.

Perceptions of Health Professionals on the Implementation of Integrative and Complementary Practices at a University Pediatric Hospital in Brazil: A Qualitative Interview Study.

BACKGROUND: Despite an increase in use of pediatric complementary and integrative health (PCIH), many healthcare professionals still have an inadequate understanding of such practices and consider their use inappropriate, which might thwart implementation processes. In a qualitative interview study we examined the feedback of conventional healthcare professionals about the integrative practices provided to pediatric patients by an integrative team in a pediatric oncological hospital. METHODS: Fifteen semi-structured interviews were carried out with various conventional healthcare professionals in an university pediatric hospital in São Paulo, Brazil. The interviews were audio-recorded, transcribed and pseudonymized. DSCsoft® and MAXQDA® software assisted in a profound qualitative analysis using the collective subject discourse and thematic analysis method in order to display participants' perspectives on PCIH and the project in their hospital. RESULTS: Interviewees acknowledged their lack of knowledge about PCIH practices and reflected on the limits of their care as well as on new possibilities PCIH could offer. PCIH was perceived by interviewees as an effective supportive tool of care to promote patients' wellbeing, assist overall compliance, strengthen cooperation between professionals, children and their relatives and hence facilitated general patient care. Since PCIH was implemented in their clinic, perceptions led interviewees to wish for increased PCIH offering and a more profound integration of its therapists into the standard of care. DISCUSSION: The coexistence of integrative and conventional practices in the conventional healthcare setting is important to give visibility to the possibilities offered by the integrative pediatrics field. Regular and constant encounters with integrative practices, as well as information access seem crucial to reach a wider openness for PCIH and subsequently a broader application and dissemination of it.

Planting Seeds for the Future: Scoping Review of Child Health Promotion Apps for Parents.

BACKGROUND: Increasingly, parents use child health promotion apps to find health information. An overview of child health promotion apps for parents currently does not exist. The scope of child health topics addressed by parent apps is thus needed, including how they are evaluated. OBJECTIVE: This scoping review aims to describe existing reported mobile health (mHealth) parent apps of middle- to high-income countries that promote child health. The focus centers on apps developed in the last 5 years, showing how the reported apps are evaluated, and listing reported outcomes found. METHODS: A scoping review was conducted according to PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses for Scoping Reviews) guidelines to identify parent apps or web-based programs on child health promotion published between January 2016 and June 2021 in 5 databases: PubMed, ERIC, IEEE Xplore, Web of Science, and Google Scholar. Separate sources were sought through an expert network. Included studies were summarized and analyzed through a systematic and descriptive content analysis, including keywords, year of publication, country of origin, aims/purpose, study population/sample size, intervention type, methodology/method(s), broad topic(s), evaluation, and study outcomes. RESULTS: In total, 39 studies met the inclusion criteria from 1040 database and 60 expert-identified studies. Keywords reflected the health topics and app foci. About 64% (25/39) of included studies were published after 2019 and most stemmed from the United States, Australian, and European-based research. Studies aimed to review or evaluate apps or conducted app-based study interventions. The number of participants ranged from 7 to 1200. Quantitative and qualitative methods were used. Interventions included 28 primary studies, 6 app feasibility studies, and 5 app or literature reviews. Eight separate topics were found: parental feeding and nutrition, physical activity, maternal-child health, parent-child health, healthy environment, dental health, mental health, and sleep. Study intervention evaluations cited behavior change theories in 26 studies and evaluations were carried out with a variety of topic-specific, adapted, self-developed, or validated questionnaires and evaluation tools. To evaluate apps, user input and qualitative evaluations were often combined with surveys and frequently rated with the Mobile App Rating Scale. Outcomes reported some positive effects, while several intervention studies saw no effect at all. Effectively evaluating changes in behavior through apps, recruiting target groups, and retaining app engagement were challenges cited. CONCLUSIONS: New parents are a key target group for child health apps, but evaluating child health promotion apps remains a challenge. Whether tailored to parent needs or adapted to the specific topic, apps should be rooted in a transparent theoretical groundwork. Applicable lessons for parent apps from existing research are to tailor app content, include intuitive and adaptive features, and embed well-founded parameters for long-term effect evaluation on child health promotion.

"Like one part of a puzzle" - individualized aromatherapy for women with gynecological cancers in aftercare: results from a qualitative-focused mixed-methods study.

BACKGROUND: Gynecological cancer(s), including breast cancer patients in aftercare and survivors, need supportive strategies to cope with symptoms that are adapted to their individual needs and circumstances. Aromatherapy has potential to be such strategy, but (qualitative) empirical research taking users' own views into consideration about the potential and challenge of aromatherapy is lacking. PURPOSE: The purpose of the study is to gain insights from individualized aromatherapy as a supportive care treatment, regarding their use and evaluation by women with gynecological cancers in aftercare. METHODS: We conducted a study with a mixed-methods design, focused on qualitative research. Five essential oil products were given to 18 participants to apply individually over a 4-week period. After the intervention, qualitative semi-structured interviews were conducted. Further, we documented and assessed symptomatic burdens of the women (MYMOP2) before and after intervention quantitatively. RESULTS: Aromatherapy was customized by the participants according to their needs. It showed potential for relief of symptomatic burdens - especially nausea, peripheral neuropathy, pain, and sleep. Additionally, opportunities emerged to indirectly affect symptomatic burdens. These developed out of new coping strategies (e.g., sleep routines) or by combining with existing strategies (e.g., meditation). Furthermore, aromatherapy was successfully used to promote well-being and encourage mindfulness. CONCLUSION: Our findings demonstrated the potential of aromatherapy as a supportive treatment modality that can be used as a kind of toolbox. Challenges, such as individual odor aversions and intolerances, and limitations due to medication or illness should be considered in future aromatherapy research.

The Effect of Cold-Water Hydrotherapy According to Sebastian Kneipp for Immune Stimulation: A Nonrandomized, Controlled, Explorative, Mixed-Methods Clinical Study.

Highlights Home-based hydrotherapy leads to fewer missed kindergarten-days in total. In the application group, more fever days could be registered. Hydrotherapy, according to the hormesis principle by Sebastian Kneipp, aims to reduce infections of the lower respiratory tract. Parents participation motivated by increase in applicable health knowledge for their children. Objectives: This study investigates the effect of cold-water hydrotherapy stimulation according to the hormesis principle by Sebastian Kneipp on the number of missing kindergarten-days, fever days, and respiratory tract infections in children aged 3-6 years. Study design: A nonrandomized, controlled, explorative, mixed-methods clinical study. Intervention: The hydrotherapeutic intervention treated children aged 3-6 years with Kneipp arm affusions over 6 weeks. The control group received no intervention. Number of missed kindergarten-days, fever days, and respiratory tract infections were assessed by means of a digital diary. Through a self-developed structured questionnaire, sociodemographic data of both groups were compared and reason for participation in the study was recorded and qualitatively evaluated. Results: Twenty children participants and their parents in the intervention group and 18 in the control group were evaluated. The intervention was conducted at home by the parents. Statistical analysis revealed no significant differences between the groups but still showed intermediate effect sizes (indicating an underpowered study). These effect sizes point to a potentially lower proportion of children in the application group versus the control group with missed kindergarten-days in total (d = 0.67), days missed due to fever (d = 0.29), and infections of the lower respiratory tract (d = 0.60). In a future study, these parameters will thus serve as promising factors for evaluation. Parent's stated reasons for participation interest were to improve health, increase their own health knowledge, and because of their interest in alternative therapies and to support research. Conclusions: Cold-water hydrotherapy stimulation, according to the hormesis principle by Sebastian Kneipp, did reduce the number of days absent in kindergarten in total in the intervention group and lower respiratory tract infections occurred less frequently. Parent' participation interest demonstrated a desire to increase health literacy and implement this with their own children. Due to the small sample size, the results should be interpreted cautiously. Clinical Trial Registration Number: German Register of Clinical Trials (DRKS): ID 00017562.

Integrative medicine during the intensive phase of chemotherapy in pediatric oncology in Germany: a randomized controlled trial with 5-year follow up.

BACKGROUND: Integrative medicine is used frequently alongside chemotherapy treatment in pediatric oncology, but little is known about the influence on toxicity. This German, multi-center, open-label, randomized controlled trial assessed the effects of complementary treatments on toxicity related to intensive-phase chemotherapy treatment in children aged 1-18 with the primary outcome of the toxicity sum score. Secondary outcomes were chemotherapy-related toxicity, overall and event-free survival after 5 years in study patients. METHODS: Intervention and control were given standard chemotherapy according to malignancy & tumor type. The intervention arm was provided with anthroposophic supportive treatment (AST); given as anthroposophic base medication (AMP), as a base medication for all patients and additional on-demand treatment tailored to the intervention malignancy groups. The control was given no AMP. The toxicity sum score (TSS) was assessed using NCI-CTC scales. RESULTS: Data of 288 patients could be analyzed. Analysis did not reveal any statistically significant differences between the AST and the control group for the primary endpoint or the toxicity measures (secondary endpoints). Furthermore, groups did not differ significantly in the five-year overall and event-free survival follow up. DISCUSSION: In this trial findings showed that AST was able to be safely administered in a clinical setting, although no beneficial effects of AST between group toxicity scores, overall or event-free survival were shown.

Mental and Behavioural Responses to Bahá'í Fasting: Looking behind the Scenes of a Religiously Motivated Intermittent Fast Using a Mixed Methods Approach.

BACKGROUND/OBJECTIVE: Historically, fasting has been practiced not only for medical but also for religious reasons. Bahá'ís follow an annual religious intermittent dry fast of 19 days. We inquired into motivation behind and subjective health impacts of Bahá'í fasting. METHODS: A convergent parallel mixed methods design was embedded in a clinical single arm observational study. Semi-structured individual interviews were conducted before (n = 7), during (n = 8), and after fasting (n = 8). Three months after the fasting period, two focus group interviews were conducted (n = 5/n = 3). A total of 146 Bahá'í volunteers answered an online survey at five time points before, during, and after fasting. RESULTS: Fasting was found to play a central role for the religiosity of interviewees, implying changes in daily structures, spending time alone, engaging in religious practices, and experiencing social belonging. Results show an increase in mindfulness and well-being, which were accompanied by behavioural changes and experiences of self-efficacy and inner freedom. Survey scores point to an increase in mindfulness and well-being during fasting, while stress, anxiety, and fatigue decreased. Mindfulness remained elevated even three months after the fast. CONCLUSION: Bahá'í fasting seems to enhance participants' mindfulness and well-being, lowering stress levels and reducing fatigue. Some of these effects lasted more than three months after fasting.

Plant Fragrances Are Like Music for Our Senses: A Scoping Review of Aromatherapy in Gynecologic Cancers and Breast Cancer Care.

Introduction: Essential oil (EO) applications via inhalation and/or absorption through the skin-often referred to as aromatherapy-have particular relevance as complementary to cancer treatment and follow-up care. Aromatherapy is of particular interest for controlling symptoms and enhancing the general well-being of people with cancer. This is indicated by the increasing number of empirical studies on this topic. Although numerous reviews have summarized the extensive primary research about aromatherapy and cancer, no review on aromatherapy use targeting women with gynecologic and breast cancers currently exists. Our scoping review aims at giving an overview of the state of research about aromatherapy in this specific target group. By summarizing and describing study characteristics, based on methodological decisions and content, we intend to offer implications for future research, focused on the use of EO in women with gynecologic and breast cancers. Methods: A systematic scoping review was conducted, based on the literature, and using the extension of the PRISMA statement for scoping reviews (PRISMA-ScR). The databases PubMed and CINHAHL were searched in a multi-stage, iterative process taking the most relevant terms under consideration, given our research interest and Boolean operators. The included studies were analyzed and summarized through (1) a table matrix including categories of interest and (2) qualitative content analysis. Results: One hundred seventy studies were examined, and 10 were included in this review. They show high heterogeneity in how the term aromatherapy is defined, in content, research design, EO used, application, and outcomes. However, all 10 studies exclusively targeted women with breast cancer in different states of cancer treatment. Conclusions: Challenges of research within this field point to the heterogeneous use and classification of the term aromatherapy, the differentiation of the principle of action of EO, the lack of transparency in how EO are reported and described (e.g., botanical names, company, dosage, mixing ratios), and the need to include subjective perceptions. Ten implications for future research based on these challenges are given.

Touching body, soul, and spirit? Understanding external applications from integrative medicine: A mixed methods systematic review.

Introduction: External applications from anthroposophic medicine (EAAM) are touch-based applications such as rhythmical massages, embrocations, and compresses that serve as components of complementary treatment concepts for various diseases. The aim of this review is to gain an understanding of typical indications and outcomes and to systematically assess the effectiveness and safety of EAAM. Materials and methods: Medline/PubMed, CINAHL, the Cochrane Library, Embase, and PsycINFO were searched through May 2021 and supplemented by searches in specialized databases and personal requests to experts in the field. Studies and case reports on EAAM in patients, as well as healthy individuals, were included in the qualitative synthesis. Outcome parameters depending on each study were grouped as effect themes and assigned to study clusters using Thematic Analysis for a thematic overview of effect patterns. Results: Four RCTs, 7 cohort studies, 1 mixed-methods, 1 retrospective, 4 qualitative studies, 3 case series, and 25 case reports on EAAM were identified. The analysis indicated various effects of EAAM on physiological as well as psychological health indicators and patterns of effect development. Study quality was found to be high for only 2 studies, and moderate for 1 study, and all remaining 45 studies showed a moderate or high risk of bias or were not ratable with used rating tools. Conclusion: The included studies present a wide range of potential indications for EAAM, while showing methodological drawbacks. To determine whether EAAM can be considered an effective treatment option, clinical studies exploring the effect of different EAAM modalities on defined patient groups are recommended for the future. Systematic review registration: [https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=214030], identifier [CRD42020214030].

The effect of Kneipp treatment hydrotherapy on secretory IgA in young children: A controlled, non-randomized clinical pilot study.

OBJECTIVES: This pilot study analyses the effect and feasibility of hydrotherapeutic Kneipp arm affusions on secretory immunoglobulin A (sIgA) and classic cold symptoms in children 3-6 years of age. STUDY DESIGN: A controlled, non-randomized, clinical pilot study was undertaken. INTERVENTION: This descriptive hydrotherapeutic intervention treated children aged 3-6 with Kneipp arm affusions over four weeks. The control group received no intervention. At baseline and after the intervention, secretory IgA was measured, cold symptoms were assessed by means of the Common Cold Questionnaire (CCQ), and a semi-structured follow-up qualitative interview of the parents in the intervention group was conducted on acceptance and susceptibility to infection of the respiratory tract. RESULTS: Fifteen participants were included in the intervention group and 15 were in the control group. The Kneipp arm affusions intervention was conducted at home and well-accepted by the children. No differences developed between the groups regarding sIgA. Comparing the symptoms by means of CCQ did not show symptoms of respiratory tract infections. In the intervention group, rhinitis occurred less frequently (26.7 % vs. 66.7 %, p = 0.057). In the qualitative analysis, 9/13 parents described an improvement in susceptibility to infections of the respiratory tract. CONCLUSION: Due to the pilot character of this study, home hydrotherapy (Kneipp arm affusions) in healthy children is feasible but did not influence sIgA levels. The influence on infections of the respiratory tract after the intervention phase should be interpreted carefully. In qualitative interviews, parents described less susceptibility to infections of the respiratory tract by their children.

Understanding Decision Making about Breast Cancer Prevention in Action: The Intersection of Perceived Risk, Perceived Control, and Social Context: NRG Oncology/NSABP DMP-1.

BACKGROUND: Literature on decision making about breast cancer prevention focuses on individual perceptions and attitudes that predict chemoprevention use, rather than the process by which women decide whether to take risk-reducing medications. This secondary analysis aimed to understand how women's perceptions of breast cancer risk and locus of control influence their decision making. METHODS: Women were accrued as part of the NRG Oncology/National Surgical Adjuvant Breast and Bowel Project Decision-Making Project 1, a study aimed at understanding contributors to chemoprevention uptake. Thirty women participated in qualitative in-depth interviews after being counseled about chemoprevention. Deductive codes grouped women based on dimensions of risk perception and locus of control. We used a constant comparative method to make connections among inductive themes focused on decision making, deductive codes for perceived risk and perceived locus of control, and the influence of explanatory models within and across participants. RESULTS: Participants were predominantly non-Hispanic white (63%), with an average age of 50.9 years. Decision making varied across groups: the high-perceived risk/high-perceived control group used "social evidence" to model the behaviors of others. High-perceived risk/low-perceived control women made decisions based on beliefs about treatment, rooted in the experiences of social contacts. The low-perceived risk/low-perceived control group interpreted signs of risk as part of the normal continuum of bodily changes in comparison to others. Low-perceived risk/high-perceived control women focused on maintaining a current healthy trajectory. CONCLUSION: "Social evidence" plays an important role in the decision-making process that is distinct from emotional aspects. Attending to patients' perceptions of risk and control in conjunction with social context is key to caring for patients at high risk in a way that is evidence based and sensitive to patient preferences.

Deciding on breast cancer risk reduction: The role of counseling in individual decision-making - A qualitative study.

OBJECTIVES: The presentation of risks and benefits in clinical practice is common particularly in situations in which treatment recommendations involve trade-offs. The treatment of breast cancer risk with selective estrogen receptor modulators (SERMs) is such a decision. We investigated the influence of health care provider (HCP) counseling on women's decision-making. METHODS: Thirty breast cancer risk counseling sessions were recorded from April 2012-August 2013 at a comprehensive cancer center and at a safety-net, community hospital in the US. Participating women and HCPs were interviewed. A cross-case synthesis was used for analysis. RESULTS: Of 30 participants 21 received a SERM-recommendation, 11 decided to take SERMs. Counseling impacted decision-making, but did not determine it. Three categories emerged: 1.) ability to change the decision anytime, 2.) perceptions on medications, and 3.) proximity of cancer. CONCLUSION: Decision-making under conditions of a risk diagnosis such as increased breast cancer risk is a continuous process in which risk information is transformed into practical and experiential considerations. PRACTICE IMPLICATIONS: Individuals' health care decision-making is only marginally dependent on the interactions in the clinic. Accepting patients' experiences and beliefs in their own right and letting them guide the discussion may be important for a satisfying decision-making process.