Working with people affected by cancer – Phase 1 of a mixed methods exploration of practitioner perspectives in nutritional therapy

Introduction - Nutritional therapy (NT) is a bioscience-based branch of complementary and alternative medicine (CAM) with National Occupational Standards (NOS) and accredited training courses which include compulsory clinical training. Approximately 900 practitioners are registered with the voluntary regulator, the Complementary and Natural Healthcare Council (CNHC), but the number of unregulated practitioners is unknown. Cancer is a leading cause of death worldwide; nutrition and lifestyle factors may affect recurrence and survival rates. Many cancer patients and survivors seek individualised advice on diet and use of supplements and appropriately skilled nutritional therapy practitioners (NTP) may be well-placed to safely provide this advice. Little is known of NTPs’ perspectives on working with people affected by cancer; this study seeks to explore their views on training, use of evidence and other resources, to support the development of safe evidence-based practice in this important clinical area. Methods – An on-line anonymised questionnaire collected data from participants recruited from all UK registered NTPs. Recruitment was facilitated by the British Association for Applied Nutrition and Nutritional Therapy (BANT). Quantitative data on practitioner characteristics, years in practice, other therapies practiced and work with cancer clients were collected. Qualitative data on types of evidence used, barriers to practice and perceived training and support needs when working with clients with cancer, were collected and analysed. SPSS was used to produce descriptive statistics. Preliminary Results – 274/888 (31%) of registered NTPs participated. 61% respondents had accredited NT qualifications of which 46% were at degree or post-graduate level. 73% (202) participants indicated they also had other higher education qualifications, including 153 (56%) at degree or above. When asked to describe their position on cancer work, 17% respondents (40/238) indicated no interest, and 35% (84/238) respondents already work with cancer clients (cancer practitioners - CP). A further 48% (114/238) respondents expressed interest in starting cancer work, and typically requested specialist training and practice guidelines to support this area of clinical practice. Cancer practitioners (CP) rated searches of peer-reviewed literature as most useful for information to support practice, whereas commercial product information was rated least useful. CPs requested engagement with mainstream medicine, more access to research evidence and professional recognition to facilitate and support work with cancer clients. A need for professional networking, mentorship and/or supervision was noted by CP and non-CP respondents, which is of interest since 81% all participants worked as sole practitioners exclusively or as part of their practice, <1% worked within the NHS. Discussion & Conclusions – This is the first detailed documentation of NTP perspectives on cancer work. A number of areas have been identified for further detailed evidence to be collected using focus groups and interviews, including detailed training needs, communication with mainstream cancer professionals, access to research evidence, and professional recognition. This work will inform and support the development of professional practice guidelines for NT and inform the development of specialist training and other resources.

Barriers to working with people affected by cancer: Preliminary qualitative data from a mixed methods exploration of practitioner perspectives in nutritional therapy

Introduction: Cancer is a leading cause of death worldwide. Nutrition may affect occurrence, recurrence and survival rates and many cancer patients and survivors seek individualized nutrition advice. Appropriately skilled nutritional therapy (NT) practitioners may be well-placed to safely provide this advice, but little is known of their perspectives on working with people affected by cancer. This mixed-methods study seeks to explore their views on training, barriers to practice, use of evidence, and other resources, to support the development of safe evidence-based practice. Preliminary data on barriers to practice are reported here. Methods: Two cohorts of NT practitioners were recruited from all UK registered NT practitioners, by an on-line anonymous survey. 84 cancer practitioners (CP) and 165 non-cancer practitioners (NCP) were recruited. Mixed quantitative and qualitative data was collected by the survey. Content analysis was used to analyze qualitative data on the use of evidence, barriers to practice and perceived needs for working with clients with cancer, for further exploration using interviews and focus groups. Preliminary results: For the NCP cohort, exploring themes of perceived barriers to working with people affected by cancer suggested that perceived complexity, risk and need for caution in this area of practice were important barriers. Insufficient specialist knowledge and skills also emerged as barriers. Some NCPs perceived opposition from medical practitioners and other mainstream healthcare professions as an obstacle to starting cancer practice. To overcome these barriers, specialist training emerged as most important. For the CP cohort, in exploring the skills they considered enabled them to undertake cancer work, specialist clinical and technical knowledge emerged strongly. Only 10% CP participants did not want more work with people affected by cancer. 10% CPs reported some NHS referrals, whereas most received clients by self-referral or from other practitioners. When considering barriers that impede their cancer practice, the dominant categories for CPs were hostility or opposition by mainstream oncology professionals, and lack of dialogue and engagement with them. To overcome these barriers, CPs desired engagement with oncology professionals and recognized specialist cancer NT training. For both NCPs and CPs, evidence resources, practice guidelines and practitioner support networks also emerged as potential enablers to cancer practice. Conclusions: This is the first detailed exploration of NT practitioners’ perceived barriers to working with people affected by cancer. Acquiring specialist skills and knowledge appears important to enable NCPs to start cancer work, and for CPs with these skills, the perceived barriers appear foremost in the relationship with mainstream cancer professionals. Further exploration of these themes, and other NT practitioner perspectives on working with people affected by cancer, is underway. This work will inform and support the development of professional practice, training and other resources.

Graded Exercise Therapy Guided Self-Help Trial for Patients with Chronic Fatigue Syndrome (GETSET): Protocol for a Randomized Controlled Trial and Interview Study

Background: Chronic fatigue syndrome, also known as myalgic encephalomyelitis (CFS/ME), is characterized by chronic disabling fatigue and other symptoms, which are not explained by an alternative diagnosis. Previous trials have suggested that graded exercise therapy (GET) is an effective and safe treatment. GET itself is therapist-intensive with limited availability. Objective: While guided self-help based on cognitive behavior therapy appears helpful to patients, Guided graded Exercise Self-help (GES) is yet to be tested. Methods: This pragmatic randomized controlled trial is set within 2 specialist CFS/ME services in the South of England. Adults attending secondary care clinics with National Institute for Health and Clinical Excellence (NICE)-defined CFS/ME (N=218) will be randomly allocated to specialist medical care (SMC) or SMC plus GES while on a waiting list for therapist-delivered rehabilitation. GES will consist of a structured booklet describing a 6-step graded exercise program, supported by up to 4 face-to-face/telephone/Skype™ consultations with a GES-trained physiotherapist (no more than 90 minutes in total) over 8 weeks. The primary outcomes at 12-weeks after randomization will be physical function (SF-36 physical functioning subscale) and fatigue (Chalder Fatigue Questionnaire). Secondary outcomes will include healthcare costs, adverse outcomes, and self-rated global impression change scores. We will follow up all participants until 1 year after randomization. We will also undertake qualitative interviews of a sample of participants who received GES, looking at perceptions and experiences of those who improved and worsened. Results: The project was funded in 2011 and enrolment was completed in December 2014, with follow-up completed in March 2016. Data analysis is currently underway and the first results are expected to be submitted soon. Conclusions: This study will indicate whether adding GES to SMC will benefit patients who often spend many months waiting for rehabilitative therapy with little or no improvement being made during that time. The study will indicate whether this type of guided self-management is cost-effective and safe. If this trial shows GES to be acceptable, safe, and comparatively effective, the GES booklet could be made available on the Internet as a practitioner and therapist resource for clinics to recommend, with the caveat that patients also be supported with guidance from a trained physiotherapist. The pragmatic approach in this trial means that GES findings will be generalizable to usual National Health Service (NHS) practice.

The design studio as liminal space

The context of this research focuses on the efficacy of design studio as a form of teaching and learning. The established model of project-based teaching makes simple parallels between studio and professional practice. However, through comparison of the discourses it is clear that they are of different character. The protocols of the tutorial tradition can act to position the tutor as a defender of the knowledge community rather than a discourse guide for the student. The question arises as to what constitutes the core knowledge that would enable better self-directed study. Rather than focus on key knowledge, there has been an attempt in other fields to agree and share ‘threshold concepts’ within disciplinary knowledge. Meyer and Land describe threshold concepts as representing “a transformed way of understanding, or interpreting or viewing something without which the learner cannot progress [1]. The tutor’s role should be to assist in transforming student’s understanding through the mastery of the ‘troublesome knowledge’ that threshold concepts may embody. Teaching and learning environments under such approaches have been described as ‘liminal’: holding the learner in an ‘in-between’ state new understanding may be difficult and involve identity shifts. Research on the consequence of pressures on facilities and studio space concur, and indicate that studio spaces can be much better used in assisting the path of learning [2]. Through an overview map of threshold concepts, the opportunities for blended learning in supporting student learning in the liminal space of the design studio become much clearer [3] Design studio needs to be recontextualised within the discourse of higher education scholarship, based on a clarified curriculum built from an understanding of what constitutes its threshold concepts. The studio needs to be reconsidered as a space quite unlike that of the practitioner, a liminal space. 1. Meyer, J.H.F. and R. Land, Threshold concepts and troublesome knowledge. Overcoming Barriers to Student Learning: Threshold concepts and troublesome knowledge., 2006: p. 19. 2. Cai, H. and S. Khan, The Common First Year Studio in a Hot-desking Age: An Explorative Study on the Studio Environment and Learning. Journal for Education in the Built Environment 2010. 5(2): p. 39-64. 3. Pektas, S.T., The Blended Design Studio: An Appraisal of New Delivery Modes in Design Education. Procedia - Social and Behavioral Sciences, 2012. 51(0): p. 692-697.

“Considering there’s supposedly nothing wrong with me, it’s not a life”: Women’s Narratives of Distress, Visiting Herbalists, and Being Well in the 21st Century

Distress can have a profoundly negative impact on the well-being of women (who are the main receivers of treatment for distress). Distress also poses a huge financial problem for the United Kingdom, the cost of which is predicted to reach over £26bn by 2026. A growing body of research has shown that various medicinal plants have potential to treat different aspects of distress. However, there is little research investigating the patient experience of western herbal practice (WHP), and none investigating women’s experiences of WHP for distress. In response, this longitudinal study utilised interviews with twenty-six women who were visiting herbalists for distress across the south-east of The United Kingdom to elicit their stories of distress, as well as their experiences of WHP. The narratives were analysed from a constructionist standpoint, using inductive thematic analysis. The participants’ narratives highlighted the profound impact of everyday distress, whilst feelings associated with distress (anxiety, low mood, isolation, shame and guilt) were frequently communicated via the use of metaphors. These negative feelings, often combined with unsuccessful biomedical encounters, frequently led to the women feeling desperate when first visiting a herbalist. The participants’ experiences of WHP showed that an accessible practitioner and good therapeutic relationship combined with flexible herbal treatment, allowed women with diverse stories of distress to overcome feelings of desperation. Ongoing support allowed the women to feel like they had a safety net as they journeyed from a place of distress, back into the wider world. These findings were supported by more unusual negative accounts, which showed how the herbal therapeutic process could be unsuccessful if elements were missing. This research is of significance as it helps to deepen our understanding of women’s experiences of distress – particularly perceptions of stigma which surround feelings of shame (linked to an inability to cope) and guilt (linked to the perceived impact of distress on others). The research also has relevance for WHP, as it highlights which positive aspects of WHP are of particular importance to women patients who are living with distress.