Head and neck cancer patient experience of a new dietitian-delivered health behaviour intervention: ‘you know you have to eat to survive’

Head and neck cancer patient experience of a new dietitian-delivered health behaviour... Purpose The aim of this study was to explore head and neck cancer (HNC) patient experiences of a novel dietitian delivered health behaviour intervention. Methods This study is a qualitative study which employed semi-structured individual interviews using open and axial coding and then final selective coding to organise the data. Patients with HNC who had participated in a dietitian delivered health behaviour intervention to reduce malnutrition were invited to discuss their experience of this intervention. Individual interviews were conducted, transcribed and analysed using grounded theory. Results Nine patients participated in the interviews. Four dimensions were identified in the initial coding process: ‘information’, which described patients’ desire for tailored advice during their treatment; ‘challenges of treatment experience’, which described the difficulties related to treatment side effects; ‘key messages: importance of eating and maintaining weight’, which covered perceived integral messages delivered to patients by dietitians; and ‘dietitian’s approach’ describing patient experiences of empathic and compassionate dietitians. Two overarching themes resulted from examining the connections and relationships between these dimensions: ‘survival’, a connection between eating and living; and ‘support’, describing the valued working partnership between dietitian and patient. Conclusions Dimensions and themes overlapped with the qualitative literature on HNC patient experience of treatment. However, some themes, such as the empowerment of a message linking eating to survival, appeared unique to this study. Patients found this message to be delivered in a supportive manner that motivated change. . . . . Keywords Head and neck cancer Qualitative Intervention Malnutrition Behaviour change Background Electronic supplementary material The online version of this article (https://doi.org/10.1007/s00520-017-4029-5) contains supplementary Patients with head and neck cancer (HNC) experience unique material, which is available to authorized users. difficulties due to the malignancy, such as difficulty in eating, fatigue, loss of appetite and weight loss, and the treatment * Kristen McCarter Kristen.McCarter@newcastle.edu.au process can compound these problems [1]. The reported prev- alence of malnutrition across all patients with cancer in Australia lies between 40 and 80% and patients with HNC School of Medicine and Public Health, University of Newcastle, Callaghan, NSW 2308, Australia are over-represented in this figure [2]. In addition to adverse treatment outcomes such as reduced resistance to the disease School of Psychology, University of Newcastle, Callaghan, NSW 2308, Australia [3], poor nutritional status during treatment has been shown to be a strong predictor of mortality in HNC [4, 5]. Department of Radiation Oncology, Calvary Mater Newcastle Hospital, Waratah, NSW 2298, Australia Multidisciplinary collaboration is important to the care of patients with diverse and complex needs such as the HNC Centre for Dietetics Research, University of Queensland, St. Lucia, QLD 4067, Australia population [6]. Oncology dietitians are considered a core 2168 Support Care Cancer (2018) 26:2167–2175 member of this multidisciplinary team [7]. However, patients in the larger investigation. Participant knowledge of the inter- with HNC are often non-adherent with dietary advice [8]. viewer was that she was a member of the EAT research team; Whilst there exists some qualitative literature exploring no other interviewer characteristics were revealed, e.g. reasons HNC patients’ eating problems during treatment [3, 9], no and interests in the research topic. The authors of the current qualitative studies exist that explore HNC patients’ experience paper were involved in the overarching trial. The second coder of dietetic consultations whilst undergoing treatment. (KM) was not known to the participants. As researchers, the Most research focuses on the outcome of dietetic interven- coders made conscious efforts not to accept previous assump- tions rather than the patient experience of the working rela- tions based on knowledge of the intervention content. tionship with their dietitian, which may be crucial to under- standing an intervention’s effectiveness. In a recent Study design randomised controlled trial, Britton et al. [8, 10]demonstrated that psychological strategies delivered by dietitians were suc- Methodological orientation and theory cessful in improving malnutrition and nutritional status in HNC patients. Given the efficacy of this intervention, under- Grounded theory [12] was the methodological orientation standing patients’ experience of the intervention is a valuable used to underpin the study. Due to the novel intervention addition to the literature. If dietitians are to be facilitators of employed in the original study, grounded theory was chosen nutritional behaviour change in the HNC population, then to investigate the actualities in the real world [12]rather than information regarding patient perceptions of the most effec- other methodologies that may require pre-existing ideas or tive components of intervention would be invaluable. hypotheses. As explained by Strauss and Corbin [13], using The present study explored experiences of HNC patients grounded theory, researchers analyse and gather data simulta- receiving a novel dietitian-delivered health behaviour inter- neously, allowing for formulation and exploration of provi- vention based on motivational interviewing (MI) and cogni- sional ideas regarding the participants’ experiences as tive behavioural therapy (CBT) as part of a larger investiga- interviewing continues. tion examining the effect of this intervention on malnutrition in HNC patients undergoing radiotherapy (RT). Our overall Participants aim was to provide patients the opportunity to share their experience of the intervention as an important component in Sampling considering its suitability for broader dissemination. As the intervention was newly developed, specifically, we wanted An initial purposive sampling strategy was used and partici- to explore the patient’s working relationship with the dietitian, pants were drawn from a pool of cancer patients who had specific components of the EAT Intervention and suggestions consented to take part in a larger investigation that evaluated for improving the intervention. the effectiveness of a dietitian-delivered health behaviour in- tervention to reduce malnutrition in patients with HNC under- going RT: eating as treatment (EAT) [8, 10]. Method Participants were selected for the interviews on the basis of their consent to participate in future research (provided at This study is reported consistent with the Consolidated commencement of the EAT study), being an intervention par- Criteria for Reporting Qualitative Research Checklist ticipant and their receipt of key components (described below) (COREQ) [11]. of the intervention (determined via a random sample of die- tetic consultation audio recordings rated for fidelity to the Interviewer characteristics intervention). Patients’ construction of the key messages around the im- Author KB conducted the interviews with participants. KB is portance of eating and maintaining weight, in addition to more a clinical psychologist and research psychologist within the general treatment related topics (e.g. side effects) during inter- research team, experienced in conducting follow-up views, confirmed the decision to continue sampling from assessments. those that had received key components of the intervention. Relationship with participants and reflexivity Method of approach No prior relationship was established with the interviewer Ethical approval was granted by the Hunter New England (KB) and the participants prior to the commencement of the Human Research Ethics Committee (HREC) of Hunter New interviews. However, KB had previously rated audio recorded England Health (HREC/12/HNE/108; HNEHREC: 12/04/18/ dietetic consultations for fidelity to the intervention delivered 4.06). Only the primary researchers had access to the raw data. Support Care Cancer (2018) 26:2167–2175 2169 Information and consent forms were mailed to eligible partic- intervention. Rather, the skills and principles can be flex- ipants asking if they were willing to participate in a tape re- ibly integrated by dietitians into routine consultations. corded telephone interview with a research assistant. An op- A detailed description of the EAT Intervention is provided tion to withdraw from future studies related to the larger in- elsewhere [8]. Briefly, key elements included conducting a vestigation was also included. The information form described validated nutritional assessment (Patient-Generated that the aims of the project were to better understand the ex- Subjective Global Assessment; PG-SGA) [17]: the ‘EAT to perience of patients who participated in the EAT dietetic in- Live’ conversation (whereby the dietitian would use MI to tervention and also to obtain any feedback on how the inter- elicit the fundamental patient motivation of survival and link vention might be improved. A reply paid envelope was in- this to both the role of nutrition in RT and the current nutrition cluded for participants to return their signed consent form if behaviours of the patient) and collaboratively developing (and they wished to participate. A follow-up telephone call was subsequently reviewing) a written nutrition planner. MI prin- made to those who agreed to participate to arrange a conve- ciples and skills were used to guide delivery of all intervention nient time to complete the telephone interview. elements. In the MI interactional style, clinicians are empathic, collaborative and elicit motivation for change from the pa- tients themselves [18]. Dietitians were encouraged to integrate Sample the intervention throughout usual practice from week one of radiotherapy to 12-week post radiotherapy, although it was One hundred and fifty-six participants received the EAT expected that the EAT to Live conversation would occur (at Intervention in the overarching trial. A 20% sample of audio a minimum) during week five of RT (when difficulties main- recorded dietetic sessions was rated for fidelity to the inter- taining nutritional status were expected to peak). vention [14]. Twenty-two participants were identified as eligi- Due to the emotional nature of the conversation raising ble for the interviews based on these fidelity ratings. Two discrepancy between a patient’s current behaviour and the potential participants declined to participate by returning with- ‘ideal’ nutritional behaviour and the link made to survival, drawal forms. Ten potential participants did not return either we were particularly interested in the EAT to Live conversa- consent or withdrawal forms. Ten potential participants initial- tion when interviewing patients. ly agreed to be interviewed (one was subsequently unable to be contacted). A total of nine participants (all male) ranging in Setting age from 53 to 75 years were interviewed (Table 1). The participants were drawn from each of the intervention sites. The interviews were conducted via telephone and audio re- In accordance with grounded theory’sconstant comparative corded. Only the interviewer and participant were present and method [12], we interviewed participants and analysed and recorded during the interview. interpreted the data in an ongoing approach. We continued interviewing participants until we reached ‘theoretical satura- Procedure tion’. This is what Glaser and Strauss (1967) referred to as the stage at which participant interviews no longer seem to be Our telephone interviews, conducted over 7 weeks, were open generating new information. ended and lasted an average of 16 min (range, 9–30 min). The interviews took place during August and September 2016, The EAT Intervention between 7 and 26 months after patients had completed the EAT Intervention (which ended 12 weeks post RT). Within the larger investigation, funded by Australia’s National Health and Medical Research Council, four Data collection Australian radiotherapy (RT) departments that provide treatment for patients with HNC were recruited. The interviewer began the interviews by asking for gen- Dietitians were trained, supervised and coached in the eral feedback about being part of the EAT study. The provision of the intervention known as EAT. The EAT interviewer also asked about the patient’s working rela- Intervention incorporates MI and cognitive behavioural tionship with the dietitian, specific components of the strategies [8, 10, 15] and was designed to increase the EAT Intervention and suggestions for improving the inter- engagement of HNC patients with dietetic intervention, vention. In general, the interviewer’s approach was to use despite a range of barriers commonly encountered by this broad questions and reflection of content and feeling to patient group; including local tumour effects, RT side ef- encourage participants to elaborate. A semi-structured in- fects (e.g. mucositis, dysgeusia, xerostomia, fatigue [1] terview guide was used to guide initial interviews (sup- and mental health problems [16]. Although the training plementary file 1) to ensure that questions were asked in was standardised, EAT is not a linearly structured an open non-directive manner, allowing participants to 2170 Support Care Cancer (2018) 26:2167–2175 Table 1 Participant Demographics Mean SD Number demographics (N =9) (%) Age (years) 61.3 6.5 Male 9(100) Tumour site Nasopharynx 1(10) Oropharynx 7(80) Oral cavity 1(10) Time since radiotherapy completion (months) 17.9 7.7 Tumour stage I 1(10) II III 1(10) IV 7(80) Radiotherapy 9(100) Surgery prior to radiotherapy 2 (20) Concurrent chemotherapy 7 (80) Prophylactic PEG 2(20) Prophylactic NGT – Percentage weight loss (at 3 months post radiotherapy as a percentage of first week 9.0 4.8 of radiotherapy weight) speakfreelyabout theirexperiences. Following initial Results open coding, the interviewer moved back and forth be- tween data collection and analysis with questions guided Initial analysis by our developing coding. Audio recordings of the telephone interviews were sent to Open coding revealed the categories ‘dietitian helpful’, ‘trou- an online professional service for transcription. The transcrip- ble eating’ and ‘feeling comfortable’. Using axial coding we tions were checked by the data coders (KB and KM). developed these categories by identifying properties and di- mensions along which participants described their experience of the EAT Intervention. In these, participants highlighted the Data analysis following: (1) information, (2) challenges of treatment expe- rience, (3) key messages and (4) dietitian’s approach. These The data was analysed using grounded theory [12, 13]. As four dimensions are presented below. such, our themes were not identified in advance but de- rived from the data. Consequently, we employed a process Information of open and axial coding and then final selective coding to organise the data. In conducting the coding, two re- The information that patients received was an important part searchers (KB and KM) were given copies of all tran- of their overall experience. Some participants described that scripts for analysis. Each level of coding generated a dis- the dietitians not only offered them ‘options’ in what they cussion until consensus was reached. could eat, but also went further to explain why particular foods Open coding is a preliminary process of generating cat- were needed, for example ‘explaining the different food egories from the data in order to group it into larger concep- groups which gave me the proteins or whichever I needed’, tual categories. Axial coding involves greater interpretation which made things ‘clearer’. However, other patients felt that and the various open coding categories are incorporated to the information regarding food options was either lacking, form broader categories, whereby themes begin to emerge. such as not being informed about nutritional supplement op- Selective coding involves searching for the meaning, con- tions ‘until I was just about to go on to the nasal feed’ or ‘very nection or richer themes among the axial codes. general’, and would have appreciated advice that was tailored Data was managed and analysis conducted using QSR to take into consideration their individual side effects or med- NVivo version 11. ical or economic circumstances. ‘There was no real recipes. Support Care Cancer (2018) 26:2167–2175 2171 You know, there was no try doing this, or this sort of food’.In about that the whole time’. ‘…the key message about main- terms of information related to side effects, patients felt that taining weight, for me, was an important barometer, and there they were well informed as to what they could expect and how is [a] focus on weighing you when you come in for your ‘they went just that bit further with explaining’. weekly, weekly I think it was, you know, monitoring that. But just knowing that’s a guide for how you’re going, it was Challenges of treatment experience an obvious one, but nonetheless you could self-monitor that at home and you could adjust your intake accordingly’. Side effects All patients interviewed described the side effects associated with HNC and RT. This included descriptions such Dietitian’sapproach as sore throat, ulcers, taste and smell changes, lack of saliva and swallowing problems. Many of the patients described Patients identified factors in the overall approach or style of having more than one issue that affected their ability to eat. the dietitian which affected their experience. The patients noted the length of time the side effects continued was ‘much longer than I’d initially expected’,particularly the Empathy The majority of participants reported that their ses- fact that side effects often get worse and persist after treatment. sions with the dietitian were not only ‘helpful’ but that they ‘I thought, you know, two weeks from now I’ll be up and felt ‘comfortable’ with the dietitians, as they were ‘under- about doing what I always used to do. But in fact at eight standing’; ‘we’re all in the same boat there somehow’. weeks I still had a very sore throat and I think it was ten or Conversely, some doubted that dietitians would know ‘what 12 weeks before I had definitely turned the corner and I could it’slike from a patients’ point of view’ because ‘nobody really see that I was getting better’. knows what it’slike unless you’ve been through it’.This sug- gested that patients felt that it was important that the dietitians Finding food to eat A number of patients described that the empathised with them and that this was element that contrib- biggest hurdle was finding recipes and foods to eat. They uted to the ‘good relationship’ and between the two described found it ‘frustrating’ that ‘there’s not a lot of options out by those who found their dietitians empathic; ‘…engagement there’. was strong’. Additional support pre- or post treatment Many of the pa- Compassion Compassion was valued by patients in addition to tients identified that linking with a dietitian earlier in their practical information. Participants felt that an important part of treatment trajectory would have been helpful, particularly in the dietitians’ role was to be ‘positive’ and ‘reassuring, you regard to receiving the key message of the importance of know like, BYou’ll make it through this, and you’ll get through maintaining or even gaining weight prior to treatment. it all^’, ‘But without being too abrupt they were quite gentle in Several of the participants described that they would have the way they were saying it’. liked more follow-up support from either the hospital or die- In our final coding process, we examined the four dimen- tetics department after their treatment finished. One rural par- sions identified during axial coding and looked for relation- ticipant described the challenges in accessing support follow- ships or connections among the categories identified in open ing treatment in regards to dental care ‘I think that’s the only coding as well as in participants’ transcripts that might serve to part, that there should be a complete follow up all the time on generate a more meaningful reflection of how they experi- cancer patients that have had to take their teeth out’.In addi- enced the intervention and their dietitians. This selective cod- tion to practical support with maintaining oral health, some ing resulted in the identification of two encompassing themes participants desired more information for the survivorship pe- that reflected what participants were telling us about their riod, ‘you know, a years’ time expect this, in two years’ time experience of the intervention. Firstly, participants appeared expect this’. to be saying that the challenges of the treatment experience resulted in changes to the meaning of food and subsequently a Key messages: importance of eating and maintaining weight focus on survival as a key coping strategy. Secondly, it was important to receive proper and sufficient information from a The participants indicated that they were aware of the impor- caring and empathic dietitian to feel adequately supported. tance of food intake and nutrition, ‘…your body actually lets you know that it’strue. You’re in no doubt about whether it’s Survival Being aware of the necessity to eat to manage the true or not because of the demands from your body are just so treatment gave rise to a connection between eating and living. great’. ‘I had to keep the nutrition in me to keep my strength Survival became a focus for the patients, ‘you know you have up, to help with, you know, like fighting the fight against the to eat to survive’, ‘…you’ve got no tastebuds, or nothing fight if you know what I mean?’ The participants also identi- tastes of anything, so and you just know that you’ve got to fied the significance of maintaining weight; ‘I kept thinking put something in your mouth to stay alive’. Patients described 2172 Support Care Cancer (2018) 26:2167–2175 their perseverance, ‘Like I say, I was still eating well behaviours. These current behaviours may not be consistent despite the sore throat, the soreness of it, which in- with the likelihood of meeting the core goal of living. The creased… But I kept eating’. It seemed that dietitians dietitian endeavours to convert the motivation elicited into hada keyroletoplayin elevatingeatingtoastrategy concrete dietary behavioural changes. that could mean the difference between life and death; Prior qualitative research exploring eating problems for ‘…the dietitians make you extremely aware of it and patients with HNC during RT has found that patients are leave no doubt’, ‘that link was very clear’, ‘Yeah, well aware of the necessity of eating to manage the treatment and see I wasn’t conscious of that until they did bring that up illness, but this leads to frustration and feelings of uncertainty and say, BLook, you know, if you haven’t maintained about whether the treatment was worth it [19]. Additionally, some weight, and when you finish the treatment, it can patients with HNC havepreviouslybeenreportedtobenon- cause you to... you can die, you know, post treatment.^ compliant with dietetic advice [8]. In the current study, the And I thought, oh OK’. Interestingly, whilst the connec- importance of eating and maintaining weight to ensure surviv- tion drawn between nutrition and survival was associated al despite the challenges of treatment was shown to be a cen- with a level of discomfort, ‘a bit of fear and anxiety’,the tral message delivered by dietitians. Further, patients de- link also empowered them; ‘I think that was reassuring, scribed not just receiving this message but implementing you know, keep an eye on that, keep on top of it’, ‘know- and even feeling empowered by it. ing that you could maintain the weight was also a bonus, The other key themes of the current study are the descrip- aplus, it’s good to know that you had control over some- tion and appreciation of empathic, compassionate and ulti- thing, that was a positive feeling’. mately supportive dietitians. That the patients perceived dieti- tians as supportive indicates that the dietitians were able to Support Inherent in the participants’ interviews about their ‘deploy discrepancy’ [18] (between not eating and wanting experience of the intervention was the notion that they wanted to survive) in the EAT Intervention in a motivating and com- information delivered by a supportive professional. passionate manner. Deploying variance requires a good rap- Participants valued a competent professional with expertise, port and genuineness for it not to seem accusatory and con- ‘I felt as though they knew precisely what they were supposed frontational [8]. This finding supports existing research that to do and what you needed to know about it’. Whilst receiving indicates greater empathy in dietetic consultations results in helpful information and advice was appreciated, a supportive improved patient satisfaction and treatment adherence [20, partnership was no doubt an important part of valued working 21]. The first principle of the EAT Intervention refers to the relationships between the patient and their dietitian. ‘Yeah, MI interactional style in which clinicians are empathic, col- they sort of help you mentally through it’, ‘You know like laborative and elicit motivation for change from the patients themselves [8, 18]. The extent to which dietitians employed they become nearly your friends’. ‘So it was like the whole program is actually just to try to help you get along and sort of the principles of the intervention is reported elsewhere [14]. get going again. So my experience with the dietitians, I find The findings of the current study indicate that this interaction- them very useful, they’re an important part of the program’. al style was valued by the participants and should be incorpo- rated into dietetic consultations. Whilst the four dimensions originally identified in the cod- Discussion ing process are represented in the two themes described above, there are a number of noteworthy points to discuss Analysis of conducted interviews identified key messages and from the original categories. The participants’ comments in common factors that affected patients’ experience and resulted regard to information suggest that it is important for the dieti- in four dimensions and two overall themes. A major finding of tian to understand the patient’s needs and wants and to tailor the present study was the theme that patients linked eating information and support based on this. This finding aligns with survival. The EAT Intervention emphasises that main- with previous qualitative research of patient experiences of taining adequate nutrition during RT is an integral part of dietetic consultations in other health settings that has found cancer treatment and not merely an adjunct to survival [8]. patients value explanation of information and advice and ad- The EAT to Live conversation employed by the dietitians aptation of advice to individual circumstances [20]. For those elicits patients’ reasons for having RT. Ultimately, a core rea- participants who felt the information given to them by their son for undergoing the rigours and sometimes severe side dietitians was lacking or too generic, it may be that there was a effects of RT includes some elements of wanting to live. In tension between what the patient identified as important and offering an invitation to explain the correlation between mal- the dietitian’s agenda. This divergence has been previously nutrition during RT and poorer outcomes, the dietitian is then identified by MacLellan and Berenbaum [22] in their study able to deploy variance by inviting the patient to reflect on that describes the difficulty in balancing client-centred ap- proaches and dietitian determination of patients’ needs. their continued RT attendance and their concurrent nutritional Support Care Cancer (2018) 26:2167–2175 2173 The eating problems and side effects of treatment described and perceived dietitians as supportive, this intervention should by participants support previous research and knowledge of be considered for use in radiotherapy departments in which the unique challenges faced by those with HNC [1]. The de- malnutrition in HNC patients is a problem. Future implemen- sire expressed by patients for earlier intervention, greater tation of the intervention should include efforts for earlier follow-up support and specifically further information on the intervention, more extensive follow-up support and greater impact of their treatment, for example the length of time side information provision on the potential impacts of treatment. effects of treatment persist, is also consistent with previous In regard to treatment outside of future implementation of research. In a study aimed at determining how satisfied the EAT intervention, our findings add to the evidence for com- HNC patients are with the information they receive pre-treat- plex needs of this patient population [1–5], specifically prior to ment, Llewellyn et al. [23] reported key areas of improvement and following radiotherapy treatment. This is also consistent identified by patients. These included long-term effects of with evidence that patients continue to report unmet supportive treatment on ability to work, physical functioning and quality care needs years after their cancer diagnosis [26] and highlight of life. the need for greater multidisciplinary team care [27–29]. Further, a qualitative study by McQuestion et al. [9]explor- ing physical, social and emotional loss for patients having Limitations received radiation treatment for HNC found that patients need to be better prepared for the post treatment phase and the slow The findings are representative of the experience of patients recovery. This was particularly relevant to realistic expecta- according to their recall. These recollections may be different tions about the pace and timeframe of recovery. Patients’ in- from what might have been the experience of participants at formation needs differ, and when adequate information is not the time they experienced the EAT Intervention, especially provided, they may be ill prepared for certain aspects of treat- when discussing the impact of an intervention they received ment and recovery. Unmet informational needs and low satis- between 7 to 26 months prior. The accounts of nine patients faction with information provision has been associated with working with six dietitians are representative of our interven- adverse patient outcomes including poorer health-related tion sample but may not reflect the variety of possible experi- quality of life [24, 25]. Consequently, it is important to address ences that patients with head and neck cancer may have during patients’ informational needs prior to treatment. treatment and therefore restricts generalizability of the find- This finding might also be explained by dietetic patients’ ings. In regard to trustworthiness, the modality of the inter- desire for dietitians to understand the individuality of the pa- views, i.e. telephone interviews, may have contributed to their tient and to identify the outcome they want from the consul- relatively short length. Telephone interviews were used due to tation and base information on this [20]. One specific compo- the participants being located across Australia. Despite the de- nent of the EAT Intervention included training dietitians in cision to cease interviews based on data saturation, it may be collaborative agenda setting. However, analyses revealed that that further information could be gathered in face to face inter- training did not significantly improve the application of this views or using focus group methodologies. However, the re- skill [14]. It may be that the desire expressed by some patients sults of this study represent a depth of understanding that adds in the current study for tailored information is a result of this to the main findings of the EAT trial that may not have other- lack of improvement. It may be useful to place greater empha- wise been uncovered with alternative methods. Given the sis on strengthening this skill during training in future unique difficulties associated with treatment for head and neck implementations of the intervention. cancer, understanding patient experience and perspectives is The EAT Intervention sought to address the inherent diffi- vital to informing the development of successful interventions. culties in intervening with the HNC population by providing dietitians with training, skills and knowledge to deal with this difficult and often overlooked group [8, 14]. The trial demon- Conclusions strated significant and clinically meaningful benefits of psy- chological strategies, delivered by dietitians, to improve mal- Dietitians can be trained to deliver a health behaviour change nutrition in HNC patients [10, 14, 15]. This qualitative inves- intervention, EAT, to help prevent malnutrition during RT for tigation further strengthens the findings of the EAT study by HNC. This intervention appears to assist patients to link eating demonstrating that dietitians are well placed to play a key role with survival and was perceived as being empathically deliv- in HNC patients’ perceptions of the role of nutrition in surviv- ered in a supportive context. Furthermore, this approach even ing treatment, and this message can be delivered to empower facilitates a feeling of control and motivation in the difficult and motivate patients to action. Given the success of the EAT HNC treatment journey. intervention in improving nutrition in HNC patients receiving radiotherapy [10], coupled with the findings of the current Acknowledgements The authors would like to thank the study partici- study that intervention patients linked eating with survival pants for their invaluable contribution. 2174 Support Care Cancer (2018) 26:2167–2175 Funding information This work was supported by a Calvary Mater 8. Britton B, McCarter K, Baker A, Wolfenden L, Wratten C, Bauer J, Newcastle James Lawrie Research Fund grant. The EAT trial was sup- Beck A, McElduff P, Halpin S, Carter G (2015) Eating as treatment ported by the National Health and Medical Research Council (EAT) study protocol: a stepped-wedge, randomised controlled trial (APP1021018; 2011/3654). of a health behaviour change intervention provided by dietitians to improve nutrition in patients with head and neck cancer undergoing radiotherapy. BMJ Open 5(7):e008921. https://doi.org/10.1136/ Compliance with ethical standards Ethical approval was granted by the bmjopen-2015-008921 Hunter New England Human Research Ethics Committee (HREC) of 9. McQuestion M, Fitch M, Howell D (2011) The changed meaning of Hunter New England Health (HREC/12/HNE/108; HNEHREC: 12/04/ food: physical, social and emotional loss for patients having received 18/4.06). radiation treatment for head and neck cancer. Eur J Oncol Nurs 15(2): 145–151. https://doi.org/10.1016/j.ejon.2010.07.006 Conflict of interest The authors declare that they have no conflict of 10. Britton B, Baker AL, Wolfenden L, Wratten C, Bauer J, Beck AK et al interest. (2017) Eating As Treatment (EAT): a stepped-wedge, randomised controlled trial of a health behaviour change intervention provided Research involving human participants and/or animals All procedures by dietitians to improve nutrition in patients with head and neck cancer performed in studies involving human participants were in accordance undergoing radiotherapy. Manuscript submitted for publication with the ethical standards of the institutional and/or national research 11. Tong A, Sainsbury P, Craig J (2007) Consolidated criteria for committee and with the 1964 Helsinki Declaration and its later amend- reporting qualitative research (COREQ): a 32-item checklist for ments or comparable ethical standards. interviews and focus groups. Int J Qual Health Care 19(6):349– 357. https://doi.org/10.1093/intqhc/mzm042 Informed consent Informed consent was obtained from all individual 12. Glaser ВSA (1967) The discovery of grounded theory. Aldine participants included in the study. Publishing, Chicago, IL 13. Strauss A, Corbin J (1990) Basics of qualitative research. Sage, Newbury Park Open Access This article is distributed under the terms of the Creative 14. Beck AK, Britton B, Baker AL, Wratten C, Bauer J, Wolfenden L Commons Attribution-NonCommercial 4.0 International License (http:// et al (2017) ‘EAT’: eating as treatment: training head and neck creativecommons.org/licenses/by-nc/4.0/), which permits any cancer dietitians in a health behaviour change intervention. noncommercial use, distribution, and reproduction in any medium, Manuscript submitted for publication. provided you give appropriate credit to the original author(s) and the 15. McCarter K, Baker AL, Britton B, Beck AK, Carter G, Bauer J et al source, provide a link to the Creative Commons license, and indicate if Effectiveness of clinical practice change strategies in improving die- changes were made. titian care for head and neck cancer patients according to evidence based clinical guidelines: a stepped wedge randomised controlled trial. 2017. Transl Behav Med. https://doi.org/10.1093/tbm/ibx016 16. Linden W, Vodermaier A, MacKenzie R, Greig D Anxiety and depression after cancer diagnosis: prevalence rates by cancer type, References gender, and age. J Affect Disord 141(2):343–351. https://doi.org/ 10.1016/j.jad.2012.03.025 1. Lees J (1999) Incidence of weight loss in head and neck cancer 17. Bauer J, Capra S, Ferguson M (2002) Use of the scored patient- patients on commencing radiotherapy treatment at a regional oncol- generated subjective global assessment (PG-SGA) as a nutrition ogy centre. Eur J Cancer Care 8(3):133–136. https://doi.org/10. assessment tool in patients with cancer. Eur J Clin Nutr 56(8): 1046/j.1365-2354.1999.00156.x 779–785. https://doi.org/10.1038/sj.ejcn.1601412 2. Kruizenga HM, Wierdsma NJ, van Bokhorst MA, Hollander H, 18. Miller WR, Rollnick S (2012) Motivational interviewing: helping Jonkers-Schuitema C, Van Der Heijden E et al (2003) Screening people change. Guilford Press of nutritional status in The Netherlands. Clin Nutr 22(2):147–152. 19. Larsson M, Hedelin B, Athlin E (2003) Lived experiences of eating https://doi.org/10.1054/clnu.2002.0611 problems for patients with head and neck cancer during radiother- 3. Larsson M, Hedelin B, Johansson I, Athlin E (2005) Eating problems apy. J Clin Nurs 12(4):562–570. https://doi.org/10.1046/j.1365- and weight loss for patients with head and neck cancer: a chart review 2702.2003.00751.x from diagnosis until one year after treatment. Cancer Nurs 28(6): 20. Hancock RE, Bonner G, Hollingdale R, Madden AM (2012) ‘If you 425–435. https://doi.org/10.1097/00002820-200511000-00004 listen to me properly, I feel good’: a qualitative examination of 4. van Leeuwen PA, Kuik DJ, Klop WMC, Sauerwein HP, Snow GB, patient experiences of dietetic consultations. J Hum Nutr Diet Quak JJ (1999) The impact of nutritional status on the prognoses of 25(3):275–284. https://doi.org/10.1111/j.1365-277X.2012.01244.x patients with advanced head and neck cancer. Cancer 86(3):519–527 21. Goodchild CE, Skinner TC, Parkin T (2005) The value of empathy 5. Britton B, Baker A, Clover K, McElduff P, Wratten C, Carter G in dietetic consultations. A pilot study to investigate its effect on (2016) Heads up: a pilot trial of a psychological intervention to im- satisfaction, autonomy and agreement. J Hum Nutr Diet 18(3):181– prove nutrition in head and neck cancer patients undergoing radio- 185. https://doi.org/10.1111/j.1365-277X.2005.00606.x therapy. Eur J Cancer Care 26(4). https://doi.org/10.1111/ecc.12502 22. MacLellan D, Berenbaum S (2007) Canadian dietitians’ under- 6. Harris JR, Lau H, Surgeoner BV, Chua N, Dobrovolsky W, Dort JC, standing of the client-centered approach to nutrition counseling. J Kalaydjian E, Nesbitt M, Scrimger RA, Seikaly H, Skarsgard D, Am Diet Assoc 107(8):1414–1417. https://doi.org/10.1016/j.jada. Webster MA, Members of the Alberta Provincial Head and Neck 2007.05.018 Tumour Team (2014) Health care delivery for head-and-neck can- 23. Llewellyn CD, McGurk M, Weinman J (2006) How satisfied are cer patients in Alberta: a practice guideline. Curr Oncol 21(5): head and neck cancer (HNC) patients with the information they e704–ee14. https://doi.org/10.3747/co.21.1980. receive pre-treatment? Results from the satisfaction with cancer 7. National Institute for Health and Clinical Excellence (NICE) (2004) information profile (SCIP). Oral Oncol 42(7):726–734. https://doi. Guidance on cancer services: improving outcomes in head and neck org/10.1016/j.oraloncology.2005.11.013. cancers—the manual. NICE, London Support Care Cancer (2018) 26:2167–2175 2175 24. Edwards D (1998) Head and neck cancer services: views of pa- coordination and case management. Int J Radiat Oncol Biol Phys 69(2, Supplement):S88–S91 tients, their families and professionals. Br J Oral Maxillofac Surg 36(2):99–102. https://doi.org/10.1016/S0266-4356(98)90175-9 28. Larsson M, Hedelin B, Athlin EA (2007) Supportive nursing care 25. Mesters I, Van den Borne B, De Boer M, Pruyn J (2001) Measuring clinic: conceptions of patients with head and neck cancer. Eur J information needs among cancer patients. Patient Educ Couns Oncol Nurs 11(1):49–59. https://doi.org/10.1016/j.ejon.2006.04.033 43(3):255–264. https://doi.org/10.1016/S0738-3991(00)00166-X 29. Wells M, Donnan PT, Sharp L, Ackland C, Fletcher J, Dewar JA 26. McDowell ME, Occhipinti S, Ferguson M, Dunn J, Chambers SK (2008) A study to evaluate nurse-led on-treatment review for pa- (2010) Predictors of change in unmet supportive care needs in cancer. tients undergoing radiotherapy for head and neck cancer. J Clin Psycho-Oncology 19(5):508–516. https://doi.org/10.1002/pon.1604 Nurs 17(11):1428–1439 27. Wiederholt PA, Connor NP, Hartig GK, Harari PM (2007) Bridging gaps in multidisciplinary head and neck cancer care: nursing http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Supportive Care in Cancer Springer Journals

Head and neck cancer patient experience of a new dietitian-delivered health behaviour intervention: ‘you know you have to eat to survive’

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Springer Berlin Heidelberg
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Copyright © 2018 by The Author(s)
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Medicine & Public Health; Oncology; Nursing; Nursing Research; Pain Medicine; Rehabilitation Medicine
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0941-4355
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10.1007/s00520-017-4029-5
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Abstract

Purpose The aim of this study was to explore head and neck cancer (HNC) patient experiences of a novel dietitian delivered health behaviour intervention. Methods This study is a qualitative study which employed semi-structured individual interviews using open and axial coding and then final selective coding to organise the data. Patients with HNC who had participated in a dietitian delivered health behaviour intervention to reduce malnutrition were invited to discuss their experience of this intervention. Individual interviews were conducted, transcribed and analysed using grounded theory. Results Nine patients participated in the interviews. Four dimensions were identified in the initial coding process: ‘information’, which described patients’ desire for tailored advice during their treatment; ‘challenges of treatment experience’, which described the difficulties related to treatment side effects; ‘key messages: importance of eating and maintaining weight’, which covered perceived integral messages delivered to patients by dietitians; and ‘dietitian’s approach’ describing patient experiences of empathic and compassionate dietitians. Two overarching themes resulted from examining the connections and relationships between these dimensions: ‘survival’, a connection between eating and living; and ‘support’, describing the valued working partnership between dietitian and patient. Conclusions Dimensions and themes overlapped with the qualitative literature on HNC patient experience of treatment. However, some themes, such as the empowerment of a message linking eating to survival, appeared unique to this study. Patients found this message to be delivered in a supportive manner that motivated change. . . . . Keywords Head and neck cancer Qualitative Intervention Malnutrition Behaviour change Background Electronic supplementary material The online version of this article (https://doi.org/10.1007/s00520-017-4029-5) contains supplementary Patients with head and neck cancer (HNC) experience unique material, which is available to authorized users. difficulties due to the malignancy, such as difficulty in eating, fatigue, loss of appetite and weight loss, and the treatment * Kristen McCarter Kristen.McCarter@newcastle.edu.au process can compound these problems [1]. The reported prev- alence of malnutrition across all patients with cancer in Australia lies between 40 and 80% and patients with HNC School of Medicine and Public Health, University of Newcastle, Callaghan, NSW 2308, Australia are over-represented in this figure [2]. In addition to adverse treatment outcomes such as reduced resistance to the disease School of Psychology, University of Newcastle, Callaghan, NSW 2308, Australia [3], poor nutritional status during treatment has been shown to be a strong predictor of mortality in HNC [4, 5]. Department of Radiation Oncology, Calvary Mater Newcastle Hospital, Waratah, NSW 2298, Australia Multidisciplinary collaboration is important to the care of patients with diverse and complex needs such as the HNC Centre for Dietetics Research, University of Queensland, St. Lucia, QLD 4067, Australia population [6]. Oncology dietitians are considered a core 2168 Support Care Cancer (2018) 26:2167–2175 member of this multidisciplinary team [7]. However, patients in the larger investigation. Participant knowledge of the inter- with HNC are often non-adherent with dietary advice [8]. viewer was that she was a member of the EAT research team; Whilst there exists some qualitative literature exploring no other interviewer characteristics were revealed, e.g. reasons HNC patients’ eating problems during treatment [3, 9], no and interests in the research topic. The authors of the current qualitative studies exist that explore HNC patients’ experience paper were involved in the overarching trial. The second coder of dietetic consultations whilst undergoing treatment. (KM) was not known to the participants. As researchers, the Most research focuses on the outcome of dietetic interven- coders made conscious efforts not to accept previous assump- tions rather than the patient experience of the working rela- tions based on knowledge of the intervention content. tionship with their dietitian, which may be crucial to under- standing an intervention’s effectiveness. In a recent Study design randomised controlled trial, Britton et al. [8, 10]demonstrated that psychological strategies delivered by dietitians were suc- Methodological orientation and theory cessful in improving malnutrition and nutritional status in HNC patients. Given the efficacy of this intervention, under- Grounded theory [12] was the methodological orientation standing patients’ experience of the intervention is a valuable used to underpin the study. Due to the novel intervention addition to the literature. If dietitians are to be facilitators of employed in the original study, grounded theory was chosen nutritional behaviour change in the HNC population, then to investigate the actualities in the real world [12]rather than information regarding patient perceptions of the most effec- other methodologies that may require pre-existing ideas or tive components of intervention would be invaluable. hypotheses. As explained by Strauss and Corbin [13], using The present study explored experiences of HNC patients grounded theory, researchers analyse and gather data simulta- receiving a novel dietitian-delivered health behaviour inter- neously, allowing for formulation and exploration of provi- vention based on motivational interviewing (MI) and cogni- sional ideas regarding the participants’ experiences as tive behavioural therapy (CBT) as part of a larger investiga- interviewing continues. tion examining the effect of this intervention on malnutrition in HNC patients undergoing radiotherapy (RT). Our overall Participants aim was to provide patients the opportunity to share their experience of the intervention as an important component in Sampling considering its suitability for broader dissemination. As the intervention was newly developed, specifically, we wanted An initial purposive sampling strategy was used and partici- to explore the patient’s working relationship with the dietitian, pants were drawn from a pool of cancer patients who had specific components of the EAT Intervention and suggestions consented to take part in a larger investigation that evaluated for improving the intervention. the effectiveness of a dietitian-delivered health behaviour in- tervention to reduce malnutrition in patients with HNC under- going RT: eating as treatment (EAT) [8, 10]. Method Participants were selected for the interviews on the basis of their consent to participate in future research (provided at This study is reported consistent with the Consolidated commencement of the EAT study), being an intervention par- Criteria for Reporting Qualitative Research Checklist ticipant and their receipt of key components (described below) (COREQ) [11]. of the intervention (determined via a random sample of die- tetic consultation audio recordings rated for fidelity to the Interviewer characteristics intervention). Patients’ construction of the key messages around the im- Author KB conducted the interviews with participants. KB is portance of eating and maintaining weight, in addition to more a clinical psychologist and research psychologist within the general treatment related topics (e.g. side effects) during inter- research team, experienced in conducting follow-up views, confirmed the decision to continue sampling from assessments. those that had received key components of the intervention. Relationship with participants and reflexivity Method of approach No prior relationship was established with the interviewer Ethical approval was granted by the Hunter New England (KB) and the participants prior to the commencement of the Human Research Ethics Committee (HREC) of Hunter New interviews. However, KB had previously rated audio recorded England Health (HREC/12/HNE/108; HNEHREC: 12/04/18/ dietetic consultations for fidelity to the intervention delivered 4.06). Only the primary researchers had access to the raw data. Support Care Cancer (2018) 26:2167–2175 2169 Information and consent forms were mailed to eligible partic- intervention. Rather, the skills and principles can be flex- ipants asking if they were willing to participate in a tape re- ibly integrated by dietitians into routine consultations. corded telephone interview with a research assistant. An op- A detailed description of the EAT Intervention is provided tion to withdraw from future studies related to the larger in- elsewhere [8]. Briefly, key elements included conducting a vestigation was also included. The information form described validated nutritional assessment (Patient-Generated that the aims of the project were to better understand the ex- Subjective Global Assessment; PG-SGA) [17]: the ‘EAT to perience of patients who participated in the EAT dietetic in- Live’ conversation (whereby the dietitian would use MI to tervention and also to obtain any feedback on how the inter- elicit the fundamental patient motivation of survival and link vention might be improved. A reply paid envelope was in- this to both the role of nutrition in RT and the current nutrition cluded for participants to return their signed consent form if behaviours of the patient) and collaboratively developing (and they wished to participate. A follow-up telephone call was subsequently reviewing) a written nutrition planner. MI prin- made to those who agreed to participate to arrange a conve- ciples and skills were used to guide delivery of all intervention nient time to complete the telephone interview. elements. In the MI interactional style, clinicians are empathic, collaborative and elicit motivation for change from the pa- tients themselves [18]. Dietitians were encouraged to integrate Sample the intervention throughout usual practice from week one of radiotherapy to 12-week post radiotherapy, although it was One hundred and fifty-six participants received the EAT expected that the EAT to Live conversation would occur (at Intervention in the overarching trial. A 20% sample of audio a minimum) during week five of RT (when difficulties main- recorded dietetic sessions was rated for fidelity to the inter- taining nutritional status were expected to peak). vention [14]. Twenty-two participants were identified as eligi- Due to the emotional nature of the conversation raising ble for the interviews based on these fidelity ratings. Two discrepancy between a patient’s current behaviour and the potential participants declined to participate by returning with- ‘ideal’ nutritional behaviour and the link made to survival, drawal forms. Ten potential participants did not return either we were particularly interested in the EAT to Live conversa- consent or withdrawal forms. Ten potential participants initial- tion when interviewing patients. ly agreed to be interviewed (one was subsequently unable to be contacted). A total of nine participants (all male) ranging in Setting age from 53 to 75 years were interviewed (Table 1). The participants were drawn from each of the intervention sites. The interviews were conducted via telephone and audio re- In accordance with grounded theory’sconstant comparative corded. Only the interviewer and participant were present and method [12], we interviewed participants and analysed and recorded during the interview. interpreted the data in an ongoing approach. We continued interviewing participants until we reached ‘theoretical satura- Procedure tion’. This is what Glaser and Strauss (1967) referred to as the stage at which participant interviews no longer seem to be Our telephone interviews, conducted over 7 weeks, were open generating new information. ended and lasted an average of 16 min (range, 9–30 min). The interviews took place during August and September 2016, The EAT Intervention between 7 and 26 months after patients had completed the EAT Intervention (which ended 12 weeks post RT). Within the larger investigation, funded by Australia’s National Health and Medical Research Council, four Data collection Australian radiotherapy (RT) departments that provide treatment for patients with HNC were recruited. The interviewer began the interviews by asking for gen- Dietitians were trained, supervised and coached in the eral feedback about being part of the EAT study. The provision of the intervention known as EAT. The EAT interviewer also asked about the patient’s working rela- Intervention incorporates MI and cognitive behavioural tionship with the dietitian, specific components of the strategies [8, 10, 15] and was designed to increase the EAT Intervention and suggestions for improving the inter- engagement of HNC patients with dietetic intervention, vention. In general, the interviewer’s approach was to use despite a range of barriers commonly encountered by this broad questions and reflection of content and feeling to patient group; including local tumour effects, RT side ef- encourage participants to elaborate. A semi-structured in- fects (e.g. mucositis, dysgeusia, xerostomia, fatigue [1] terview guide was used to guide initial interviews (sup- and mental health problems [16]. Although the training plementary file 1) to ensure that questions were asked in was standardised, EAT is not a linearly structured an open non-directive manner, allowing participants to 2170 Support Care Cancer (2018) 26:2167–2175 Table 1 Participant Demographics Mean SD Number demographics (N =9) (%) Age (years) 61.3 6.5 Male 9(100) Tumour site Nasopharynx 1(10) Oropharynx 7(80) Oral cavity 1(10) Time since radiotherapy completion (months) 17.9 7.7 Tumour stage I 1(10) II III 1(10) IV 7(80) Radiotherapy 9(100) Surgery prior to radiotherapy 2 (20) Concurrent chemotherapy 7 (80) Prophylactic PEG 2(20) Prophylactic NGT – Percentage weight loss (at 3 months post radiotherapy as a percentage of first week 9.0 4.8 of radiotherapy weight) speakfreelyabout theirexperiences. Following initial Results open coding, the interviewer moved back and forth be- tween data collection and analysis with questions guided Initial analysis by our developing coding. Audio recordings of the telephone interviews were sent to Open coding revealed the categories ‘dietitian helpful’, ‘trou- an online professional service for transcription. The transcrip- ble eating’ and ‘feeling comfortable’. Using axial coding we tions were checked by the data coders (KB and KM). developed these categories by identifying properties and di- mensions along which participants described their experience of the EAT Intervention. In these, participants highlighted the Data analysis following: (1) information, (2) challenges of treatment expe- rience, (3) key messages and (4) dietitian’s approach. These The data was analysed using grounded theory [12, 13]. As four dimensions are presented below. such, our themes were not identified in advance but de- rived from the data. Consequently, we employed a process Information of open and axial coding and then final selective coding to organise the data. In conducting the coding, two re- The information that patients received was an important part searchers (KB and KM) were given copies of all tran- of their overall experience. Some participants described that scripts for analysis. Each level of coding generated a dis- the dietitians not only offered them ‘options’ in what they cussion until consensus was reached. could eat, but also went further to explain why particular foods Open coding is a preliminary process of generating cat- were needed, for example ‘explaining the different food egories from the data in order to group it into larger concep- groups which gave me the proteins or whichever I needed’, tual categories. Axial coding involves greater interpretation which made things ‘clearer’. However, other patients felt that and the various open coding categories are incorporated to the information regarding food options was either lacking, form broader categories, whereby themes begin to emerge. such as not being informed about nutritional supplement op- Selective coding involves searching for the meaning, con- tions ‘until I was just about to go on to the nasal feed’ or ‘very nection or richer themes among the axial codes. general’, and would have appreciated advice that was tailored Data was managed and analysis conducted using QSR to take into consideration their individual side effects or med- NVivo version 11. ical or economic circumstances. ‘There was no real recipes. Support Care Cancer (2018) 26:2167–2175 2171 You know, there was no try doing this, or this sort of food’.In about that the whole time’. ‘…the key message about main- terms of information related to side effects, patients felt that taining weight, for me, was an important barometer, and there they were well informed as to what they could expect and how is [a] focus on weighing you when you come in for your ‘they went just that bit further with explaining’. weekly, weekly I think it was, you know, monitoring that. But just knowing that’s a guide for how you’re going, it was Challenges of treatment experience an obvious one, but nonetheless you could self-monitor that at home and you could adjust your intake accordingly’. Side effects All patients interviewed described the side effects associated with HNC and RT. This included descriptions such Dietitian’sapproach as sore throat, ulcers, taste and smell changes, lack of saliva and swallowing problems. Many of the patients described Patients identified factors in the overall approach or style of having more than one issue that affected their ability to eat. the dietitian which affected their experience. The patients noted the length of time the side effects continued was ‘much longer than I’d initially expected’,particularly the Empathy The majority of participants reported that their ses- fact that side effects often get worse and persist after treatment. sions with the dietitian were not only ‘helpful’ but that they ‘I thought, you know, two weeks from now I’ll be up and felt ‘comfortable’ with the dietitians, as they were ‘under- about doing what I always used to do. But in fact at eight standing’; ‘we’re all in the same boat there somehow’. weeks I still had a very sore throat and I think it was ten or Conversely, some doubted that dietitians would know ‘what 12 weeks before I had definitely turned the corner and I could it’slike from a patients’ point of view’ because ‘nobody really see that I was getting better’. knows what it’slike unless you’ve been through it’.This sug- gested that patients felt that it was important that the dietitians Finding food to eat A number of patients described that the empathised with them and that this was element that contrib- biggest hurdle was finding recipes and foods to eat. They uted to the ‘good relationship’ and between the two described found it ‘frustrating’ that ‘there’s not a lot of options out by those who found their dietitians empathic; ‘…engagement there’. was strong’. Additional support pre- or post treatment Many of the pa- Compassion Compassion was valued by patients in addition to tients identified that linking with a dietitian earlier in their practical information. Participants felt that an important part of treatment trajectory would have been helpful, particularly in the dietitians’ role was to be ‘positive’ and ‘reassuring, you regard to receiving the key message of the importance of know like, BYou’ll make it through this, and you’ll get through maintaining or even gaining weight prior to treatment. it all^’, ‘But without being too abrupt they were quite gentle in Several of the participants described that they would have the way they were saying it’. liked more follow-up support from either the hospital or die- In our final coding process, we examined the four dimen- tetics department after their treatment finished. One rural par- sions identified during axial coding and looked for relation- ticipant described the challenges in accessing support follow- ships or connections among the categories identified in open ing treatment in regards to dental care ‘I think that’s the only coding as well as in participants’ transcripts that might serve to part, that there should be a complete follow up all the time on generate a more meaningful reflection of how they experi- cancer patients that have had to take their teeth out’.In addi- enced the intervention and their dietitians. This selective cod- tion to practical support with maintaining oral health, some ing resulted in the identification of two encompassing themes participants desired more information for the survivorship pe- that reflected what participants were telling us about their riod, ‘you know, a years’ time expect this, in two years’ time experience of the intervention. Firstly, participants appeared expect this’. to be saying that the challenges of the treatment experience resulted in changes to the meaning of food and subsequently a Key messages: importance of eating and maintaining weight focus on survival as a key coping strategy. Secondly, it was important to receive proper and sufficient information from a The participants indicated that they were aware of the impor- caring and empathic dietitian to feel adequately supported. tance of food intake and nutrition, ‘…your body actually lets you know that it’strue. You’re in no doubt about whether it’s Survival Being aware of the necessity to eat to manage the true or not because of the demands from your body are just so treatment gave rise to a connection between eating and living. great’. ‘I had to keep the nutrition in me to keep my strength Survival became a focus for the patients, ‘you know you have up, to help with, you know, like fighting the fight against the to eat to survive’, ‘…you’ve got no tastebuds, or nothing fight if you know what I mean?’ The participants also identi- tastes of anything, so and you just know that you’ve got to fied the significance of maintaining weight; ‘I kept thinking put something in your mouth to stay alive’. Patients described 2172 Support Care Cancer (2018) 26:2167–2175 their perseverance, ‘Like I say, I was still eating well behaviours. These current behaviours may not be consistent despite the sore throat, the soreness of it, which in- with the likelihood of meeting the core goal of living. The creased… But I kept eating’. It seemed that dietitians dietitian endeavours to convert the motivation elicited into hada keyroletoplayin elevatingeatingtoastrategy concrete dietary behavioural changes. that could mean the difference between life and death; Prior qualitative research exploring eating problems for ‘…the dietitians make you extremely aware of it and patients with HNC during RT has found that patients are leave no doubt’, ‘that link was very clear’, ‘Yeah, well aware of the necessity of eating to manage the treatment and see I wasn’t conscious of that until they did bring that up illness, but this leads to frustration and feelings of uncertainty and say, BLook, you know, if you haven’t maintained about whether the treatment was worth it [19]. Additionally, some weight, and when you finish the treatment, it can patients with HNC havepreviouslybeenreportedtobenon- cause you to... you can die, you know, post treatment.^ compliant with dietetic advice [8]. In the current study, the And I thought, oh OK’. Interestingly, whilst the connec- importance of eating and maintaining weight to ensure surviv- tion drawn between nutrition and survival was associated al despite the challenges of treatment was shown to be a cen- with a level of discomfort, ‘a bit of fear and anxiety’,the tral message delivered by dietitians. Further, patients de- link also empowered them; ‘I think that was reassuring, scribed not just receiving this message but implementing you know, keep an eye on that, keep on top of it’, ‘know- and even feeling empowered by it. ing that you could maintain the weight was also a bonus, The other key themes of the current study are the descrip- aplus, it’s good to know that you had control over some- tion and appreciation of empathic, compassionate and ulti- thing, that was a positive feeling’. mately supportive dietitians. That the patients perceived dieti- tians as supportive indicates that the dietitians were able to Support Inherent in the participants’ interviews about their ‘deploy discrepancy’ [18] (between not eating and wanting experience of the intervention was the notion that they wanted to survive) in the EAT Intervention in a motivating and com- information delivered by a supportive professional. passionate manner. Deploying variance requires a good rap- Participants valued a competent professional with expertise, port and genuineness for it not to seem accusatory and con- ‘I felt as though they knew precisely what they were supposed frontational [8]. This finding supports existing research that to do and what you needed to know about it’. Whilst receiving indicates greater empathy in dietetic consultations results in helpful information and advice was appreciated, a supportive improved patient satisfaction and treatment adherence [20, partnership was no doubt an important part of valued working 21]. The first principle of the EAT Intervention refers to the relationships between the patient and their dietitian. ‘Yeah, MI interactional style in which clinicians are empathic, col- they sort of help you mentally through it’, ‘You know like laborative and elicit motivation for change from the patients themselves [8, 18]. The extent to which dietitians employed they become nearly your friends’. ‘So it was like the whole program is actually just to try to help you get along and sort of the principles of the intervention is reported elsewhere [14]. get going again. So my experience with the dietitians, I find The findings of the current study indicate that this interaction- them very useful, they’re an important part of the program’. al style was valued by the participants and should be incorpo- rated into dietetic consultations. Whilst the four dimensions originally identified in the cod- Discussion ing process are represented in the two themes described above, there are a number of noteworthy points to discuss Analysis of conducted interviews identified key messages and from the original categories. The participants’ comments in common factors that affected patients’ experience and resulted regard to information suggest that it is important for the dieti- in four dimensions and two overall themes. A major finding of tian to understand the patient’s needs and wants and to tailor the present study was the theme that patients linked eating information and support based on this. This finding aligns with survival. The EAT Intervention emphasises that main- with previous qualitative research of patient experiences of taining adequate nutrition during RT is an integral part of dietetic consultations in other health settings that has found cancer treatment and not merely an adjunct to survival [8]. patients value explanation of information and advice and ad- The EAT to Live conversation employed by the dietitians aptation of advice to individual circumstances [20]. For those elicits patients’ reasons for having RT. Ultimately, a core rea- participants who felt the information given to them by their son for undergoing the rigours and sometimes severe side dietitians was lacking or too generic, it may be that there was a effects of RT includes some elements of wanting to live. In tension between what the patient identified as important and offering an invitation to explain the correlation between mal- the dietitian’s agenda. This divergence has been previously nutrition during RT and poorer outcomes, the dietitian is then identified by MacLellan and Berenbaum [22] in their study able to deploy variance by inviting the patient to reflect on that describes the difficulty in balancing client-centred ap- proaches and dietitian determination of patients’ needs. their continued RT attendance and their concurrent nutritional Support Care Cancer (2018) 26:2167–2175 2173 The eating problems and side effects of treatment described and perceived dietitians as supportive, this intervention should by participants support previous research and knowledge of be considered for use in radiotherapy departments in which the unique challenges faced by those with HNC [1]. The de- malnutrition in HNC patients is a problem. Future implemen- sire expressed by patients for earlier intervention, greater tation of the intervention should include efforts for earlier follow-up support and specifically further information on the intervention, more extensive follow-up support and greater impact of their treatment, for example the length of time side information provision on the potential impacts of treatment. effects of treatment persist, is also consistent with previous In regard to treatment outside of future implementation of research. In a study aimed at determining how satisfied the EAT intervention, our findings add to the evidence for com- HNC patients are with the information they receive pre-treat- plex needs of this patient population [1–5], specifically prior to ment, Llewellyn et al. [23] reported key areas of improvement and following radiotherapy treatment. This is also consistent identified by patients. These included long-term effects of with evidence that patients continue to report unmet supportive treatment on ability to work, physical functioning and quality care needs years after their cancer diagnosis [26] and highlight of life. the need for greater multidisciplinary team care [27–29]. Further, a qualitative study by McQuestion et al. [9]explor- ing physical, social and emotional loss for patients having Limitations received radiation treatment for HNC found that patients need to be better prepared for the post treatment phase and the slow The findings are representative of the experience of patients recovery. This was particularly relevant to realistic expecta- according to their recall. These recollections may be different tions about the pace and timeframe of recovery. Patients’ in- from what might have been the experience of participants at formation needs differ, and when adequate information is not the time they experienced the EAT Intervention, especially provided, they may be ill prepared for certain aspects of treat- when discussing the impact of an intervention they received ment and recovery. Unmet informational needs and low satis- between 7 to 26 months prior. The accounts of nine patients faction with information provision has been associated with working with six dietitians are representative of our interven- adverse patient outcomes including poorer health-related tion sample but may not reflect the variety of possible experi- quality of life [24, 25]. Consequently, it is important to address ences that patients with head and neck cancer may have during patients’ informational needs prior to treatment. treatment and therefore restricts generalizability of the find- This finding might also be explained by dietetic patients’ ings. In regard to trustworthiness, the modality of the inter- desire for dietitians to understand the individuality of the pa- views, i.e. telephone interviews, may have contributed to their tient and to identify the outcome they want from the consul- relatively short length. Telephone interviews were used due to tation and base information on this [20]. One specific compo- the participants being located across Australia. Despite the de- nent of the EAT Intervention included training dietitians in cision to cease interviews based on data saturation, it may be collaborative agenda setting. However, analyses revealed that that further information could be gathered in face to face inter- training did not significantly improve the application of this views or using focus group methodologies. However, the re- skill [14]. It may be that the desire expressed by some patients sults of this study represent a depth of understanding that adds in the current study for tailored information is a result of this to the main findings of the EAT trial that may not have other- lack of improvement. It may be useful to place greater empha- wise been uncovered with alternative methods. Given the sis on strengthening this skill during training in future unique difficulties associated with treatment for head and neck implementations of the intervention. cancer, understanding patient experience and perspectives is The EAT Intervention sought to address the inherent diffi- vital to informing the development of successful interventions. culties in intervening with the HNC population by providing dietitians with training, skills and knowledge to deal with this difficult and often overlooked group [8, 14]. The trial demon- Conclusions strated significant and clinically meaningful benefits of psy- chological strategies, delivered by dietitians, to improve mal- Dietitians can be trained to deliver a health behaviour change nutrition in HNC patients [10, 14, 15]. This qualitative inves- intervention, EAT, to help prevent malnutrition during RT for tigation further strengthens the findings of the EAT study by HNC. This intervention appears to assist patients to link eating demonstrating that dietitians are well placed to play a key role with survival and was perceived as being empathically deliv- in HNC patients’ perceptions of the role of nutrition in surviv- ered in a supportive context. Furthermore, this approach even ing treatment, and this message can be delivered to empower facilitates a feeling of control and motivation in the difficult and motivate patients to action. Given the success of the EAT HNC treatment journey. intervention in improving nutrition in HNC patients receiving radiotherapy [10], coupled with the findings of the current Acknowledgements The authors would like to thank the study partici- study that intervention patients linked eating with survival pants for their invaluable contribution. 2174 Support Care Cancer (2018) 26:2167–2175 Funding information This work was supported by a Calvary Mater 8. Britton B, McCarter K, Baker A, Wolfenden L, Wratten C, Bauer J, Newcastle James Lawrie Research Fund grant. The EAT trial was sup- Beck A, McElduff P, Halpin S, Carter G (2015) Eating as treatment ported by the National Health and Medical Research Council (EAT) study protocol: a stepped-wedge, randomised controlled trial (APP1021018; 2011/3654). of a health behaviour change intervention provided by dietitians to improve nutrition in patients with head and neck cancer undergoing radiotherapy. BMJ Open 5(7):e008921. https://doi.org/10.1136/ Compliance with ethical standards Ethical approval was granted by the bmjopen-2015-008921 Hunter New England Human Research Ethics Committee (HREC) of 9. McQuestion M, Fitch M, Howell D (2011) The changed meaning of Hunter New England Health (HREC/12/HNE/108; HNEHREC: 12/04/ food: physical, social and emotional loss for patients having received 18/4.06). radiation treatment for head and neck cancer. Eur J Oncol Nurs 15(2): 145–151. https://doi.org/10.1016/j.ejon.2010.07.006 Conflict of interest The authors declare that they have no conflict of 10. Britton B, Baker AL, Wolfenden L, Wratten C, Bauer J, Beck AK et al interest. (2017) Eating As Treatment (EAT): a stepped-wedge, randomised controlled trial of a health behaviour change intervention provided Research involving human participants and/or animals All procedures by dietitians to improve nutrition in patients with head and neck cancer performed in studies involving human participants were in accordance undergoing radiotherapy. Manuscript submitted for publication with the ethical standards of the institutional and/or national research 11. Tong A, Sainsbury P, Craig J (2007) Consolidated criteria for committee and with the 1964 Helsinki Declaration and its later amend- reporting qualitative research (COREQ): a 32-item checklist for ments or comparable ethical standards. interviews and focus groups. Int J Qual Health Care 19(6):349– 357. https://doi.org/10.1093/intqhc/mzm042 Informed consent Informed consent was obtained from all individual 12. Glaser ВSA (1967) The discovery of grounded theory. Aldine participants included in the study. Publishing, Chicago, IL 13. Strauss A, Corbin J (1990) Basics of qualitative research. Sage, Newbury Park Open Access This article is distributed under the terms of the Creative 14. Beck AK, Britton B, Baker AL, Wratten C, Bauer J, Wolfenden L Commons Attribution-NonCommercial 4.0 International License (http:// et al (2017) ‘EAT’: eating as treatment: training head and neck creativecommons.org/licenses/by-nc/4.0/), which permits any cancer dietitians in a health behaviour change intervention. noncommercial use, distribution, and reproduction in any medium, Manuscript submitted for publication. provided you give appropriate credit to the original author(s) and the 15. McCarter K, Baker AL, Britton B, Beck AK, Carter G, Bauer J et al source, provide a link to the Creative Commons license, and indicate if Effectiveness of clinical practice change strategies in improving die- changes were made. titian care for head and neck cancer patients according to evidence based clinical guidelines: a stepped wedge randomised controlled trial. 2017. Transl Behav Med. https://doi.org/10.1093/tbm/ibx016 16. Linden W, Vodermaier A, MacKenzie R, Greig D Anxiety and depression after cancer diagnosis: prevalence rates by cancer type, References gender, and age. J Affect Disord 141(2):343–351. https://doi.org/ 10.1016/j.jad.2012.03.025 1. Lees J (1999) Incidence of weight loss in head and neck cancer 17. Bauer J, Capra S, Ferguson M (2002) Use of the scored patient- patients on commencing radiotherapy treatment at a regional oncol- generated subjective global assessment (PG-SGA) as a nutrition ogy centre. Eur J Cancer Care 8(3):133–136. https://doi.org/10. assessment tool in patients with cancer. Eur J Clin Nutr 56(8): 1046/j.1365-2354.1999.00156.x 779–785. https://doi.org/10.1038/sj.ejcn.1601412 2. Kruizenga HM, Wierdsma NJ, van Bokhorst MA, Hollander H, 18. Miller WR, Rollnick S (2012) Motivational interviewing: helping Jonkers-Schuitema C, Van Der Heijden E et al (2003) Screening people change. Guilford Press of nutritional status in The Netherlands. Clin Nutr 22(2):147–152. 19. Larsson M, Hedelin B, Athlin E (2003) Lived experiences of eating https://doi.org/10.1054/clnu.2002.0611 problems for patients with head and neck cancer during radiother- 3. Larsson M, Hedelin B, Johansson I, Athlin E (2005) Eating problems apy. J Clin Nurs 12(4):562–570. https://doi.org/10.1046/j.1365- and weight loss for patients with head and neck cancer: a chart review 2702.2003.00751.x from diagnosis until one year after treatment. Cancer Nurs 28(6): 20. Hancock RE, Bonner G, Hollingdale R, Madden AM (2012) ‘If you 425–435. https://doi.org/10.1097/00002820-200511000-00004 listen to me properly, I feel good’: a qualitative examination of 4. van Leeuwen PA, Kuik DJ, Klop WMC, Sauerwein HP, Snow GB, patient experiences of dietetic consultations. J Hum Nutr Diet Quak JJ (1999) The impact of nutritional status on the prognoses of 25(3):275–284. https://doi.org/10.1111/j.1365-277X.2012.01244.x patients with advanced head and neck cancer. Cancer 86(3):519–527 21. Goodchild CE, Skinner TC, Parkin T (2005) The value of empathy 5. Britton B, Baker A, Clover K, McElduff P, Wratten C, Carter G in dietetic consultations. A pilot study to investigate its effect on (2016) Heads up: a pilot trial of a psychological intervention to im- satisfaction, autonomy and agreement. J Hum Nutr Diet 18(3):181– prove nutrition in head and neck cancer patients undergoing radio- 185. https://doi.org/10.1111/j.1365-277X.2005.00606.x therapy. Eur J Cancer Care 26(4). https://doi.org/10.1111/ecc.12502 22. MacLellan D, Berenbaum S (2007) Canadian dietitians’ under- 6. Harris JR, Lau H, Surgeoner BV, Chua N, Dobrovolsky W, Dort JC, standing of the client-centered approach to nutrition counseling. J Kalaydjian E, Nesbitt M, Scrimger RA, Seikaly H, Skarsgard D, Am Diet Assoc 107(8):1414–1417. https://doi.org/10.1016/j.jada. Webster MA, Members of the Alberta Provincial Head and Neck 2007.05.018 Tumour Team (2014) Health care delivery for head-and-neck can- 23. Llewellyn CD, McGurk M, Weinman J (2006) How satisfied are cer patients in Alberta: a practice guideline. Curr Oncol 21(5): head and neck cancer (HNC) patients with the information they e704–ee14. https://doi.org/10.3747/co.21.1980. receive pre-treatment? Results from the satisfaction with cancer 7. National Institute for Health and Clinical Excellence (NICE) (2004) information profile (SCIP). Oral Oncol 42(7):726–734. https://doi. Guidance on cancer services: improving outcomes in head and neck org/10.1016/j.oraloncology.2005.11.013. cancers—the manual. NICE, London Support Care Cancer (2018) 26:2167–2175 2175 24. Edwards D (1998) Head and neck cancer services: views of pa- coordination and case management. Int J Radiat Oncol Biol Phys 69(2, Supplement):S88–S91 tients, their families and professionals. Br J Oral Maxillofac Surg 36(2):99–102. https://doi.org/10.1016/S0266-4356(98)90175-9 28. Larsson M, Hedelin B, Athlin EA (2007) Supportive nursing care 25. Mesters I, Van den Borne B, De Boer M, Pruyn J (2001) Measuring clinic: conceptions of patients with head and neck cancer. Eur J information needs among cancer patients. Patient Educ Couns Oncol Nurs 11(1):49–59. https://doi.org/10.1016/j.ejon.2006.04.033 43(3):255–264. https://doi.org/10.1016/S0738-3991(00)00166-X 29. Wells M, Donnan PT, Sharp L, Ackland C, Fletcher J, Dewar JA 26. McDowell ME, Occhipinti S, Ferguson M, Dunn J, Chambers SK (2008) A study to evaluate nurse-led on-treatment review for pa- (2010) Predictors of change in unmet supportive care needs in cancer. tients undergoing radiotherapy for head and neck cancer. J Clin Psycho-Oncology 19(5):508–516. https://doi.org/10.1002/pon.1604 Nurs 17(11):1428–1439 27. Wiederholt PA, Connor NP, Hartig GK, Harari PM (2007) Bridging gaps in multidisciplinary head and neck cancer care: nursing

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Supportive Care in CancerSpringer Journals

Published: Jan 27, 2018

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