Identification of the Needs and Preferences of Patients With Cancer for the Development of a Clinic App: Qualitative Study.

BACKGROUND: Mobile health (mHealth) tools were developed during the past decades and are increasingly used by patients in cancer care too. Scientific research in the development of mHealth services is required in order to meet the various needs of patients and test usability. OBJECTIVE: The aim of this study is to assess patients' needs, preferences, and usability of an app (My University Clinic [MUC] app) developed by the Comprehensive Cancer Center Freiburg (CCCF) Germany. METHODS: Based on a qualitative cross-sectional approach, we conducted semistructured interviews with patients with cancer, addressing their needs, preferences, and usability of the designed MUC app. Patients treated by the CCCF were recruited based on a purposive sampling technique focusing on age, sex, cancer diagnoses, and treatment setting (inpatient, outpatient). Data analysis followed the qualitative content analysis according to Kuckartz and was performed using computer-assisted software (MAXQDA). RESULTS: For the interviews, 17 patients with cancer were selected, covering a broad range of sampling parameters. The results showed that patients expect benefits in terms of improved information about the disease and communication with the clinic staff. Demands for additional features were identified (eg, a list of contact persons and medication management). The most important concerns referred to data security and the potential restriction of personal contacts with health care professionals of the clinical departments of the CCCF. In addition, some features for improving the design of the MUC app with respect to usability or for inclusion of interacting tools were suggested by the patients. CONCLUSIONS: The results of this qualitative study were discussed within the multidisciplinary team and the MUC app providers. Patients' perspectives and needs will be included in further development of the MUC app. There will be a second study phase in which patients will receive a test version of the MUC app and will be asked about their experiences with it. TRIAL REGISTRATION: Deutsches Register Klinischer Studien DRKS00022162; https://drks.de/search/de/trial/DRKS00022162.

Intentional and actional components of engaged participation in public health research studies: qualitative synthesis of a recruitment and retention process into the theory-informed INTACT-RS framework.

BACKGROUND: Ensuring motivated and successful study participation is a key challenge in the design and conduct of health research studies. Previously, recruitment barriers and facilitators have been identified mainly from experience, and rarely based on theoretical approaches. We developed a framework of intentional and actional components of engaged participation in public health research studies (INTACT-RS), informed by psychological behavioral models. We aimed a) to identify precise indicators for each framework component and b) to better understand which components and decision processes are essential for study participants. METHODS: Within a multicenter research network, we applied various approaches to recruit parents of newborns, pediatricians, and midwives. All recruitment processes were documented from the perspective of both participants and researchers. We used different qualitative and quantitative data material, which we applied in a multistage process according to the basic principles of qualitative content analysis. RESULTS: INTACT-RS encompasses pre-intentional, intentional and actional phases with a total of n = 15 components covering all aspects of an individual's involvement with a research study. During intention formation, an understanding of efforts and benefits, why participation is valuable beyond contributing to research, and how others perceive the study, were particularly important to (potential) participants. Subsequently (intentional phase), participants consider how and when participation is compatible with their own resources, ability and availability, and hence seek for close communication with, and flexibility and support from the research team. During and after (initial) participation (actional phase), participants' assessment of whether expectations and interests have been met impact crucial further steps, especially the willingness to continue and to recommend participation to others. A strong topic-wise and or supportive participation interest as well as active, continuous exchange with the researchers appeared to be central determinants of study completion and data validity. CONCLUSIONS: A theoretical framework is now available to plan and conduct recruitment of different target groups, which accounts for essential motivational and volitional decision-making processes. Based on empirically specified constructs, possible barriers can be addressed even before the initial recruitment process. Therefore, recommendations for scientific practice have been formulated.

Pathways linking parental health literacy with health behaviours directed at the child: a scoping review.

Health literacy (HL) is thought to be crucial for the management of the manifold demands relating to child health which parents are faced with. Albeit many studies have investigated parental HL and health behaviours (HBs) directed at the child, knowledge about the pathways which link parental HL with HB is scarce. The aim of this scoping review was to identify and comprehensively describe the variety of pathways linking parental HL with HBs directed at the child which were empirically analysed in previous studies. Following established scoping review methods database searches were conducted in MEDLINE, EMBASE, PsycINFO and WebofScience on 5 March 2020. Eligibility criteria included primary, empirical studies assessing parental HL and HB directed at the child in the general parent population. Titles and abstracts were screened independently by six reviewers for potentially relevant publications and data were extracted using standardized data extraction forms. The search identified 6916 articles for title and abstract screening. After full-text review, 50 studies were included in this review. Most studies (N = 24) assumed a direct association between HL and HBs and only few studies (N = 4) used more complex models investigating different pathways or mediation and/or moderation models. Overall, the evidence on the underlying pathways linking parental HL and HBs directed at the child is mixed and fairly limited. Therefore, hypothesis-driven research and integration of results into theoretical frameworks is needed for advancing both the research on HL and public health practice.

This systematic overview of existing literature aimed at comprehensively describing the association between parental health literacy (HL) and health behaviours (HBs) directed at the child and how this linkage was analysed in previous studies. HL can be defined as the capacity an individual has to access and effectively use health-related information, in order to promote and maintain good health. A particularly relevant group is the parent population as prior to and during parenthood they are confronted with manifold information regarding child health care. Many studies investigated parental HL and HBs directed at the child but knowledge about how they are connected with each other is scarce. The 50 studies included in this review varied widely in how they measured HL and HBs and how data were analysed. Overall, most studies (24 studies) assumed a direct association between HL and HBs and only few studies (4 studies) used more complex models looking at other important variables. More research is needed to understand the underlying relation between HL and HBs and how this can be integrated into theoretical frameworks.

Barriers to utilisation of cancer rehabilitation from the expert's view: A cross-sectional survey.

OBJECTIVE: The goal of this study was to investigate barriers to utilisation of cancer rehabilitation by querying a large sample of various professionals in health care with a comprehensive set of barriers. METHODS: We developed a questionnaire comprising 55 barriers to utilisation of cancer rehabilitation and administered it to four different types of medical, care and social work experts involved in the referral to cancer rehabilitation. An exploratory factor analysis was conducted and the extracted factors were ranked by mean values. Additionally, ANOVAs were calculated to test for group differences. RESULTS: Our sample (N = 606) consisted of 249 physicians, 194 social workers, 105 nurses and 55 psychologists in Germany. We identified seven barrier-dimensions: low appreciation of rehabilitation by professionals, insufficient coordination, insufficient application procedure, rehabilitation requirements not met, patients' unfulfilled demands, patients' social responsibilities and patients' coping style, with the latter being rated as the most obstructive thereof. Furthermore, we found statistically significant group differences for six of these factors with small- to medium-sized effects. CONCLUSION: Our results support previous publications implicating the patients' coping style as a barrier. We furthermore found evidence for barriers relating to processes and organisational issues, thereby expanding on the scope of patient-oriented publications. Suggestions for improving patients' health services accessibility are made.

[Barriers in the Application Process for Oncological Rehabilitation: A Nationwide Expert Study]. / Barrieren der Antragstellung in der Onkologischen Rehabilitation: Eine bundesweite Expertenstudie.

PURPOSE: From the perspective of various expert groups involved in the care of oncological patients, barriers to the application process of oncological rehabilitation programs will be identified. The study was funded by the German Pension Insurance Association (DRV). METHODS: Based on an interview study (N=61), a questionnaire instrument with 55 items describing possible barriers in the application process was designed and implemented online. Participants with more than 33% missing values were excluded from the analyses. Mean value analyses were used to identify the most significant relevance. To identify overall dimensions an explorative factor analysis was conducted . RESULTS: A total of 606 experts from the oncological field were included in the analyses. Among them were 249 doctors, 194 social workers, 105 nurses / medical assistants, 55 psychologists / psycho-oncologists and three other professional groups. The queried experts were on average 51 years old (SD=10.4) and had been working in the oncological field for 17 years (SD=9.8). The barriers could be assigned to the following seven factor-analytically determined content sections: coping style, application procedure, rehabilitation requirements, coordination, social responsibilities, desires of patient and the priority of rehabilitation. According to the experts statements the main obstacles to an application were the patient's desire for normality, the rigid deadline for the application and the application procedure which is difficult for patients with a migration background to understand. It was also pointed out that it is difficult to place multimorbid patients in rehabilitation facilities. CONCLUSION: The following recommendations for action to facilitate access to rehabilitation can be derived from the expert study: optimization of the coordination between different expert groups, institutions and the cost units, flexibilisation of the deadline for follow-up, simplifying the application process, providing applications/information material in additional languages, orienting rehabilitation clinics towards specific patient groups.

[Barriers in the Application Process for Oncological Rehabilitation: Results of a Qualitative Expert Survey]. / Barrieren bei der Antragstellung zur onkologischen Rehabilitation: Ergebnisse einer qualitativen Expertenbefragung.

PURPOSE: In this study, which was funded by the German Federal Pension Fund (DRV), barriers in the application process for oncological rehabilitation services were examined from the perspective of various expert groups. METHODS: In an exploratory multicentre qualitative cross-sectional study 61 semi-structured interviews with experts working in oncological care were conducted: Physicians (n=26), social workers (n=22), psychologists/psycho-oncologists (n=6), nurses/medical assistants (n=5), administrative staff of the DRV (n=2). In guided interviews the participants were asked about their experiences with rehabilitation applications as well as their estimations and evaluations regarding possible reasons for non-utilisation. The evaluation of the interviews was computerized and based on the qualitative content analysis by Mayring. RESULTS: The respondents had an average age of 52.51 years (SD=10.06; min=25, max=71) and were working in the consultation or treatment of oncological patients for an average of 19.26 years (SD=10.15; min=1, max=42). In total, 854 statements were coded and assigned to the following three main categories: expert-related, system-related and patient-related barriers. In the first main category, scepticism about the benefits of rehabilitation services and an insufficiently met need for information on the part of experts became the focus of attention. In the main category of system-related barriers, aspects were mentioned that addressed the application procedure, the low availability of, for example, outpatient rehabilitation services and the absence of a functioning referral system. The main category of patient-related barriers included psychosocial factors such as subcategories on the topic of coping with the disease which include the patient's desire to come home, experience everyday life again and the fear of being confronted with the disease. CONCLUSION: The exploratory study revealed potential barriers in the application process for oncological rehabilitation services from an expert perspective. In particular, the findings form the basis for a multi-dimensional assessment instrument that can be used to analyze the barriers in a standardised way and to derive individual recommendations for action.