Supporting patients with low health literacy: what role do radiation therapists play?

Purpose: Health literacy plays a key role in a patient’s ability to use health information and services, and can affect health outcomes. This study aimed to explore radiation therapists’ perspectives on how they support people with lower health literacy who are undergoing radiotherapy. Methods: Semi-structured interviews were conducted with 25 radiation therapists working in radiation oncology departments in New South Wales, Australia. Results: The four key themes were (1) the process of identifying a patient with low health literacy, (2) the perceived consequences of low health literacy, (3) managing and responding to the needs of different health literacy groups and (4) recommendations to address low health literacy in radiotherapy. Radiation therapists appeared to make an informal, intuitive judgment about a patient’s health literacy, using a variety of verbal and non-verbal cues as well as impromptu conversations with the multi-disciplinary team. Patients perceived to have lower health literacy were described as having greater difficulties assimilating knowledge and engaging in self-care. Although participants reported communicating to patients at a basic level initially, they subsequently tailored their communication to match a patient’s health literacy. Strategies reported to communicate to low health literacy groups ranged from using lay language with minimal medical terminology, using visual aids (photos), using analogies, reiterating information and asking family members with higher literacy to attend consultations. Conclusion: A more structured approach to supporting patients with low health literacy and integrating health literacy training in radiation oncology departments may help to minimise the adverse outcomes typically experienced by this population

Evaluating telehealth cancer genetic counselling: impact on genetic counselling outcomes, patient satisfaction and acceptability

Telegenetics is increasingly being used to deliver familial cancer services for hereditary breast/ovarian cancer (HBOC) to outreach areas; however, there has been little research evaluating this method of service delivery. This thesis reports on a multi-method evaluation of the effectiveness and acceptability of genetic counseling through videoconferencing. In Study One, practitioners delivering telegenetics services undertook semi-structured interviews, exploring their experiences and attitudes towards telegenetics. They reported feeling highly satisfied with telegenetics, as it was found to be convenient, efficient, cost effective, and minimized travel, whilst increasing access to rural areas. Disadvantages included being not being able to detect non-verbal cues, build rapport and having less time for emotional exploration. Study Two qualitatively explored the experiences and satisfaction of women who had received telegenetics services for HBOC genetic counselling. Women expressed high levels of satisfaction with telegenetics, most rating it eight out of ten, or higher. The majority of women described feeling a high degree of rapport with the off-site genetic clinician. One case, involving a recent cancer diagnosis, highlighted the need for practitioners to be mindful of the potentially complex psychosocial needs of women with a recent diagnosis. Study Three adopted a prospective, non-inferiority design to evaluate whether telegenetics was at least as effective as face-to-face genetic counselling across widely accepted measures of genetic counselling outcomes. It demonstrated that telegenetics was as effective as face-to-face counselling with regard to overall patient satisfaction with the genetic counselling service, and addressing generalised anxiety and depression. The videoconferencing connection did not affect the patient’s perception of empathy in relation to either the genetic clinician or genetic counsellor. Telegenetics performed better than face-to-face counselling in the areas of meeting patient expectations, promoting perceived personal control, and addressing cancer-specific anxiety. By contrast, face-to-face counselling was more effective than telegenetics in terms of increasing knowledge about HBOC. Overall, practitioners and patients were satisfied with telegenetics and perceived the advantages as outweighing the disadvantages. Telegenetics was found to be at least as effective, if not more so, than face-to-face genetic counselling across most outcome measures. Overall, this study has shown that telegenetics is an effective and efficient method of service delivery, and offers a viable alternative to face-to-face genetic counselling for HBOC

Women’s experience of telehealth cancer genetic counseling

Telegenetics offers an alternative model of delivering genetic counseling to rural and outreach areas; however there is a dearth of qualitative research into the patient’s experience. Twelve women who had received telemedicine genetic counseling for hereditary breast and/or ovarian cancer (HBOC) within the previous 12 months participated in a semi-structured telephone interview. The interview explored women’s experience with telegenetics, satisfaction, perceived advantages and disadvantages and quality of the interaction with their genetic professionals. Overall women were highly satisfied with telegenetics. Telegenetics offered them convenience and reduced travel and associated costs. The majority of women described feeling a high degree of social presence, or rapport, with the off-site genetic clinician. One woman with a recent cancer diagnosis, reported that telemedicine was unable to meet her needs for psychosocial support. This finding highlights the need to be mindful of the psychosocial support needs of women with a recent diagnosis being seen via telegenetics. Patients attending for HBOC genetic counseling are generally highly satisfied with the technology and the interaction. Care should be taken, however, with patients with more complex psychosocial needs

A balancing act—Telehealth cancer genetics and practitioners’ experiences of a triadic consultation

Telehealth is increasingly used for outreach service in cancer genetic counseling; however what occurs during the consultation and the roles practitioners adopt is largely unknown. Fifteen practitioners participated in semi-structured interviews that explored their roles within telehealth, compared to face-to-face consultations, and the relationship between practitioners during telehealth. As they were not physically present with the patient, most participants felt that telehealth altered the genetic clinician’s role to one of a ‘visiting specialist’. Genetic counselors described undertaking multiple roles during the telehealth process. Two models of interaction were observed. The medical model reduced the interaction to a dyadic consultation by having the genetic counselor off-screen and included minimal clinician meetings and supervision. The triadic co-facilitation model incorporated a high level of information exchange, counselor autonomy and included the counselor onscreen. The co-facilitation model offers a useful framework for telehealth genetic counselling, offering complementary roles between practitioners and efficient service delivery

The virtual consultation: practitioners' experiences of genetic counseling by videoconferencing in Australia

Objective: Videoconferencing for clinical genetics services, or telegenetics, is becoming an increasingly utilized method of delivering genetic counseling to rural areas; however, there has been little qualitative exploration of the practitioner's experience, particularly for hereditary breast/ovarian cancer counseling. Methods: Semistructured interviews were conducted with genetic practitioners (n=15) delivering telegenetics services in New South Wales, Australia. Interviews explored experiences, perceived aims of the service, satisfaction, and the advantages and disadvantages of the technology. Interviews were audiotaped, transcribed, and thematically analyzed. Results: All practitioners were highly satisfied with telegenetics. They perceived the advantages of videoconferencing as primarily increased efficiency and convenience for genetic clinicians, minimized travel for the patient, reduced costs, and increased access to rural areas. Disadvantages included the inhibition of rapport building between genetic clinician and patient and the difficulty in detecting nonverbal cues. Telegenetics was seen as a structured interaction that allowed less time for emotional exploration than a traditional face-to-face consultation. Technical disadvantages involved visual resolution, connection speed, and interruptions to voice transmission. Conclusion: Practitioners were satisfied with telegenetics and perceived the advantages as outweighing the disadvantages

Perceptions of melanoma risk among Australian adolescents: barriers to sun protection and recommendations for improvement

Abstract Objectives: To explore adolescents’ perceptions of melanoma risk, sun protection intervention preferences and perceived barriers to sun protection recommendations. Methods: Semi‐structured focus groups were held in school classes, stratified by location (coastal, inland) and sector (public, private); discussions were transcribed verbatim and data were analysed using NVivo8 software. Results: 100 students (mean age=14.4 years, SD=0.5; range=14–16 years) from six high schools participated. Students demonstrated a high level of sun protection knowledge and understanding of sun exposure as a primary risk factor for the development of melanoma. There was, however, an under‐estimation of melanoma prevalence and mortality rates among youth, and poor understanding of the increased risk associated with sunburn during childhood/adolescence. Adolescents’ preferences for intervention focused on first‐person accounts of receiving a melanoma diagnosis, communicated by young melanoma survivors. Interventions modelled on youth marketing campaigns or utilising social media were rated poorly. Conclusions: Despite young Australians’ adequate knowledge of melanoma and related health recommendations, poor adherence continues to place young people at risk. Study findings suggest that social media interventions developed to influence behaviour change, are not necessarily preferred by adolescents