Patient and carer experience of nutrition care throughout and beyond treatment for head and neck cancer: a qualitative longitudinal study

Nutrition care plays a critical role in optimising outcomes for patients receiving treatment for head and neck cancer (HNC), with carers playing an important role in supporting patients to maintain nutrition intake. This study explores patient and carer experience of nutrition care from diagnosis of HNC to 1 year post treatment completion to identify areas for improvement of service delivery. A longitudinal qualitative study design was used with a heterogeneous sample of 20 patients and 15 carers of patients undergoing curative intent treatment for HNC. Interviews conducted at four time points provided a total of 117 interview datasets that were analysed using reflexive thematic analysis based on Gadamerian hermeneutic inquiry. Patient and carer experiences were reflected in two primary themes: (1) the battle to maintain control and (2) navigating the road ahead. This research identifies the need to co-design strategies to improve nutrition care that is inclusive of patients and carers.


Background
Head and neck cancer (HNC) represents 5% of all cancers and cancer deaths worldwide [1]. Alcohol and tobacco use are established risk factors for HNC [2], with human papillomavirus (HPV) infection a cause of increasing incidence in younger adults [3]. The main treatment methods for HNC are surgery, radiotherapy and chemotherapy, with many patients undergoing multimodal treatment [4]. Patients with HNC may experience difficulty with nutrition intake prior to treatment due to the psychological impact of their diagnosis, tumour location and lifestyle factors [5,6]. Treatment toxicities often cause severe physical and psychosocial side effects further impacting nutrition intake [7]. Consequently, many patients with HNC are at high risk of malnutrition prior to, throughout and beyond their treatment period.
Despite the provision of evidence-based nutrition support, malnutrition rates remain high, increasing patient risk of unplanned hospital admissions and mortality and decreasing quality of life and treatment [8,9]. While a multidisciplinary approach is critical in the provision of best practice nutrition care to patients with HNC, studies have highlighted the importance of the carer in the provision of nutrition care [10]. In addition to other caregiving tasks, many carers take on the role of food purchasing, meal and snack preparation and encouraging intake. In some cases, they assist the patient they are providing care for with tube feeding [11]. Exploring patient and carer experiences may provide greater insight into ways to optimise nutrition care and support. A systematic review of qualitative studies investigating patient and carer experiences highlighted the paucity of data exploring the carer experience of nutrition care and the need for further research exploring patient and carer experience of nutrition care across different treatment modalities, before, during and beyond the treatment period [12].
The aim of this study was to explore and understand patient and carer experiences of nutrition care from diagnosis of HNC to one year post treatment completion, with the purpose of identifying areas for improving service delivery.

Study design
This study focused on nutrition care with preunderstanding rooted in our previously published systematic review, which highlighted the need for further research to understand patient and carer experiences of accessing information and support at different stages of the treatment and survivorship period [12].Therefore, a prospective longitudinal qualitative study was undertaken by conducting interviews with patients and carers of patients with HNC prior to treatment commencing, and 2 weeks, 3 months and 12 months post treatment completion. Interviews and analysis were undertaken by the principal investigator (JH), a dietitian working in HNC but not providing direct care of participants. A narrative interview method, with prompting by the interviewer, was used to allow patients and carers to tell their story about their experiences of nutrition care [13]. This was chosen instead of semi-structured interviews to ensure patients and carers shared their story in their own words rather than guided by a series of specific questions. Reflexive thematic analysis based on Gadamerian hermeneutic inquiry was used in the steps of data collection, interpretation and analysis [14][15][16]. Gadamerian hermeneutic inquiry was chosen as a research methodology as it focuses on the understanding the meaning of text as influenced by the pre-understanding of the researcher [17]. This provided the opportunity for the principal investigator to acknowledge their personal experiences working as a clinical dietitian with patients and carers of patients with HNC when analysing and interpreting the text.

Setting
In current practice, patients diagnosed with HNC attend a multidisciplinary HNC clinic where they are screened for malnutrition by a dietitian. High-risk patients are referred for dietetic intervention and prophylactic gastrostomy placement prior to treatment aligning with local hospital protocol [18]. As per evidence-based guidelines, patients undergoing radiotherapy are referred for weekly appointments with the dietitian and ongoing follow up fortnightly for a minimum of 6 weeks post treatment completion [19]. Patients undergoing surgery requiring enteral feeding are seen by the ward dietitian to review commencement of enteral nutrition support and transition to oral intake with follow-up appointments scheduled fortnightly or as needed. Follow-up care for patients is dependent on their local health service district location.

Participants
Patients and carers were recruited from a multidisciplinary HNC clinic at a tertiary/quaternary hospital in Brisbane, Australia. Patients and carers were approached to participate if they could speak English, aged over 18 years, and presenting with their first diagnosis of HNC and suitable for curative intent treatment. Purposive sampling was used to select patients and carers from a range of treatment modalities, tumour size, geographical location, gender and age.

Consent
Participants were provided with verbal and written information on the study on presentation to the multidisciplinary HNC clinic at the time of their diagnosis. Consent to participate was obtained 1 week later.

Procedures
Interviews were completed by the principal investigator between June 2018 and April 2020 and were conducted prospectively over the first year from diagnosis (prior to treatment commencing and 2 weeks, 3 months and 12 months post treatment completion). Each interview began with a broad definition of nutrition care, and participants were asked to describe their experiences in accessing support with their nutrition intake at each separate time point. Themes emerging from earlier interviews were incorporated into the interview guide in subsequent interviews. Interviews were held face to face or via telephone as per participant preference. Interviews lasted between 10 and 60 min and were audio recorded and transcribed verbatim by the principal investigator.

Data analysis
The understanding of the interview text within a total of 117 interview transcripts was carried out through a back and forth process between the parts and the whole as outlined in the six-phase process for thematic analysis by Braun and Clarke [14]. This included (1) familiarisation with the data, (2) coding, (3) generating initial themes, (4) reviewing themes, (5) defining and naming themes and (6) writing up [14].
The 'text' was fused with the experiences of the principal investigator to facilitate interpretation and a complete understanding of the dataset by taking into consideration the researchers own experiences working with patients and carers of patients undergoing treatment for HNC and through the survivorship period and how this may enhance interpretation of the data. To support a reflexive approach, weekly meetings were conducted with the second researcher (AY; dietitian not working in HNC), to discuss individual influences on the process and outcomes. The consolidated criteria for reporting qualitative research (COREQ) checklist was used to ensure comprehensive reporting [20].

Ethics approval
Ethics approval was obtained by the Royal Brisbane and Women's Hospital Human Research & Ethics Committee, Brisbane, and the Ethics Committee of the University of Queensland, Brisbane, Australia (HREC/17/QRBW/681), with Site Specific Approval for the study to be conducted at the Royal Brisbane and Women's Hospital.

Participant demographics
Thirty-five participants (20 patients and 15 carers) were enrolled in the study. Diagram 1 outlines participant recruitment and retention in the study, with demographics outlined in Table 1. There was a relatively even spread of patient participants across different treatment modalities. However, there were fewer carer participants of patients undergoing surgery alone. Three patient-carer dyads participated in the study. Eleven patient participants and 12 patients being cared for by carer participants had a feeding tube placed over the duration of their care. The mean age of participants was 59 years for patients and 55 years for carers.

Qualitative themes
Two main themes were identified. These included (1) the battle to maintain control and (2) navigating the road ahead. Within each theme, subthemes were identified as outlined in Tables 2 and 3. Theme 1: The battle to maintain control Subtheme 1.1: Health and nutrition beliefs At each interview time point, patients and carers described having a focus on healthy eating. For some this translated to eliminating foods they believed to be linked to cancer and disease, particularly when they had heard stories from others claiming to have beaten cancer through diet alone ( Table 2, quote 1).
Some participants described a lack of acknowledgement of their own views on nutrition and health by the dietitian. Consequently, some patients withdrew from nutrition care provided to them throughout treatment when nutrition recommendations provided did not align with their nutrition beliefs ( Table 2, quote 2).
Despite participants expressing strong views on nutrition and health, nutrition support provided to them throughout their treatment from the dietitian and multidisciplinary team was highly valued ( Table 2, quote 3). At the end of the treatment period, the overall sense was that patients and carers wanted to step away from high protein, high energy food and fluid recommendations, as their focus shifted to making lifestyle and dietary changes to prevent cancer recurrence ( Table 2, quote 4).
One year post treatment, some patients reflected on wanting more open discussions with healthcare professionals about the use of vitamin and mineral supplementation and complementary alternative medicine to support them through their treatment and recovery (Table 2, quote 5).

Subtheme 1.2: Weight loss rollercoaster
Prior to treatment, patients and carers expressed their views on weight loss as a positive outcome (Table 2, quote 6). As the acuity of treatment side effects worsened, impacting on nutrition intake, weight loss for some became uncontrolled. This had a negative effect on the psychological wellbeing of patients and carers as it also included a loss of strength and muscle mass (Table 2, quote 7,8).
Some carers feared that weight loss was a sign that the patient was not getting better, while others felt helpless despite their efforts in providing care (Table 2, quote 9).
As weight loss became controlled again after treatment completion, patients and carers reflected positively on the experience, as it aligned with their goals of leading a healthy lifestyle. This included wanting to maintain a lower body weight while restoring muscle mass lost through the treatment period (Table 2, quote 10,11). Subtheme 1.3: Acceptance of feeding tube Patients undergoing chemoradiotherapy were accepting of recommendations to have a prophylactic gastrostomy tube placed when it was presented as a necessary part of treatment (Table 2, quote 12). Some patients made the decision to decline gastrostomy placement and described how this provided them with the motivation to maintain oral intake to avoid nasogastric tube placement ( Table 2, quote 13).
One patient expressed resentment after having a nasogastric tube placed after declining prophylactic gastrostomy tube placement when it was presented as an optional part of treatment ( Table 2, quote 14). Despite being described as an unpleasant experience, surgical patients were accepting of nasogastric tube placement in theatre as they understood it was the only way they could be provided nutrition support when they were unable to eat and drink orally as they recovered from surgery ( Table 2,  quote 15).
Overall, carers highly valued the gastrostomy tube and viewed it as a necessary part of treatment, as it provided a solution to support the patient with nutrition intake when eating and drinking became too difficult ( Table 2, quote 16). Subtheme 1.4: Gatekeeper role of the patient Some patients limited the amount of information they shared and support they accepted from friends and family in an effort to avoid being a burden to them. One patient described how the enormity of his diagnosis and treatment plan had left seeking solidarity to process the information himself first before accepting the support of loved ones ( Table 2, quote 17). While this was done by patients in a way to protect those trying to provide care, some carers expressed their frustration in being excluded from the provision of care. One carer described how nutrition care provided by healthcare professionals was not passed onto her by her partner and therefore not of value to the patient when the information provided did not take into account the practical aspects of nutrition support, including acknowledgement of the fact that she was the one responsible for grocery shopping and meal preparation ( Table 2, quote 18).
After the end of the treatment period, some carers found it difficult when they still wanted to maintain contact with healthcare professionals for nutrition support but felt this was not an option available to them if the patient was not accepting of follow-up care ( Table 2, quote 19). Subtheme 1.5: Invisible load of carer Prior to treatment commencing, carers described the importance of maintaining their strength and having a positive outlook to support the patient. However, after supporting the patient through the  treatment and recovery period, the psychological impact of taking on this role was emphasised. Carers described the stress they experienced in trying to maintain their physical health to ensure they had enough strength to continue to support the patient (Table 2, quote 20). The biggest challenge carers described was the lack of support available to them in their carer role from healthcare professionals and the negative impact this had on their psychological wellbeing. One carer described the severity of the psychological impact of providing care for her father without having any support for herself and consequently found it difficult to return to the hospital with her father for his followup appointments ( Table 2, quote 21). Theme 2: Navigating the road ahead Subtheme 2.1: Challenges comprehending information provided Patients described feeling unprepared for the impact that treatment side effects had on their ability to eat and drink despite being provided with nutrition care from healthcare professionals. One year after treatment completion, patients reflected on how difficult it was to absorb information provided to them due to the enormity of their diagnosis and treatment. Some felt no amount of information would have helped them prepare for what lay ahead of them (Table 3, quote 1).

Subtheme 2.2: Information accessibility and inclusivity
Patients and carers of patients having radiation treatment felt well supported by healthcare professionals with nutrition care, as regular appointments with the dietitian were scheduled over their treatment period. In contrast, carers of surgical patients found it challenging to access nutrition support from healthcare professionals on the ward (Table 3, quote 2). Some patients and carers looked up nutrition information and support on the internet. Carers valued the ease of access to information that the internet provided; however, some struggled to filter out appropriate from non-appropriate sources of nutrition support, especially without the guidance of healthcare professionals (Table 3, quote 3).
Written information that was easy to understand was valued by patients and carers as they could refer back to it at any time. However, several participants described a desire to have more visual aids to refer to and to be provided with hands on practical sessions to increase self-efficacy to support nutrition intake. One patient felt that practical sessions including cooking classes would give them the confidence to action nutrition recommendations provided to them (Table 3, quote 4).

Subtheme 2.3:
Moving away from the hospital environment Prior to treatment commencing, patients and carers described how much they valued having access to a multidisciplinary team of healthcare professionals to support them through their HNC journey (Table 3, quote 5).
Having access to a multidisciplinary team of healthcare professionals working in the same environment provided patients and carers with a feeling of security around their overall care. Consequently, some patients and carers from regional and rural locations found it difficult when the same level of support was not accessible or available to them when they returned home (Table 3, quote 6).
Patients remaining in the hospital district location who still had access to support from the multidisciplinary team after treatment completion described a degree of self-disengagement from the hospital environment and healthcare professionals. Patients were happy to prioritise hospital appointments with surgeons or oncologists but otherwise felt their nutrition care was something that could be managed independently at home. Some patients described that their focus now was on returning to work and 'getting back to normal' (Table 3, quote 7).
Carers found it challenging where they no longer had frequent contact and support from healthcare professionals after treatment completion ( Table 3, quote 8). However, as the acuity of the side effects of treatment eased, carers felt some reprieve from the intensity of their caring role and described an appreciation of being back in their home environment (Table 3, quote 9).

Subtheme 2.4: Peer support
Patients and carers valued having access to information and support from other patients and carers that had been through treatment for HNC. This included being able to read their experiences either in the form of booklets, magazines or blogs online (Table 3, quote  10).
Others found it useful be able to talk to patients and carers they met throughout treatment or support groups as it provided the opportunity to talk through different strategies to support nutrition intake (Table 3, quote 11).
Some carers felt that attendance at support groups was dependent on the patient's willingness to engage rather than a support option for themselves (Table 3, quote 12).

Discussion
Our findings reveal two main themes describing patient and carer experience of nutrition care throughout and beyond treatment for HNC. While current evidence-based guidelines support appropriate and quality nutrition care for patients with HNC [19], findings from this study highlight tensions in the care relationships between patients, carers and healthcare professionals, as well as the changing nutritional needs and focus throughout the treatment and recovery journey.
'The battle to maintain control' describes the struggle patients and carers experience in trying to regain a level of control in their life while juggling the psychological impact of their diagnosis and treatment [21]. Dietary changes and use of complementary alternative medicine (CAM) have been previously described by patients as a proactive step towards health improvement [22,23]. We found that patients and carers had difficulty engaging with healthcare professionals when they felt their views on nutrition and health were not acknowledged. Sources of dietary and CAM information can be misleading when they are more commonly provided by family and friends, health food stores and social media platforms [24]. As a step towards preventing disengagement and ensuring patient safety, this study highlights the need for healthcare professionals to provide patients and carers with the opportunity to discuss their nutrition views and beliefs and explore individual barriers and enablers to nutrition recommendations provided.
Weight loss in patients diagnosed with cancer can be distressing for patients and carers, having a negative impact on quality of life and functional status of patients [12,25]. While we found high levels of patient and carer distress when weight loss was uncontrolled, overall weight loss was viewed as a positive outcome. Negative emotion can be experienced when there is feeling of threat to wellbeing [26]. In our study, patients and carers described negative emotion 2 weeks after treatment completion when weight loss had escalated with the increasing acuity of treatment side effects. This demonstrates the need to address the psychological impact of weight loss on the patient and carer to alleviate feelings of distress, especially when carers may take this on as their responsibility. Levels of distress were further exacerbated with loss of muscle mass and strength. Approximately 70% of weight loss in patients with HNC is attributable to muscle loss, resulting in reduced strength and performance and increased risk of recurrence and mortality [27,28]. However, several patients and carers felt that weight loss aligned with their goals to lead a healthier future. This suggests a need for discussion with patients and carers around the impact of skeletal muscle depletion on survival. Recent studies have highlighted the value that body composition and muscle status evaluation measures hold in becoming part of routine clinical practice to facilitate early identification of sarcopenia [29,30].
The literature on patient and carer experiences of enteral feeding highlight the stress and anxiety experienced in making a decision about tube placement [31]. This includes the role healthcare professionals play in influencing their decision, with many basing recommendations on personal experiences and perceptions [32,33]. Findings from our study align with recommendations that healthcare professionals should be provided with education and training about the different types of enteral feeding to ensure patients and carers are able to make a well-informed decision [32,34]. Studies have found that patients with prior experience with enteral feeding are happy to support other patients in the decision-making process [35,36]. This presents an opportunity for peer support and learning through the experience of others when making key decisions about tube placement.
Some patients distance themselves from support provided to them from healthcare professionals, as well as family and friends [21]. We found that patient disengagement from care and support can create emotional distress for the carer, especially where they feel their own access to information and support from healthcare professionals is dependent on patient engagement. As previously described, while this study is focused on nutrition care, this also extends to their overall care, including accessing other sources of support from the multidisciplinary team [30]. Where carers play a key role in seeking out information to support the patient, it is important that healthcare professionals identify ways to overcome these barriers to ensure patients and carers have access to information and support [30].
'Navigating the road ahead' describes the effort made by patients and carers in looking forward to the future. Participants valued having information they could refer to in order to support their nutrition intake. However, studies have shown that health literacy levels impact the understanding and interpretation of nutrition-related information [37]. In this study, some patients expressed frustration in being provided with information when it did not translate to them having the confidence and skills to act on recommendations provided. A culinary intervention program developed for patients with cancer-related fatigue found that access to experiential learning in the form of face to face and online cooking classes improved participants cooking skills, providing them with greater confidence to achieve their nutritional intake [38]. Furthermore, the use of visual aids including illustrations and videos can help patients and carers have a greater understanding of information provided [39]. These findings suggest the need to work with patients and carers to develop resources that are practical and easy to understand to support their nutrition intake.
Over the years, patients and carers have increasingly turned to the internet including social media platforms to document their cancer journey, seek social support and obtain information [40]. The internet provides the opportunity for patients and carers to seek information and support regardless of geographical location and for carers to seek support independently of the patient. While this can be beneficial, there is the potential for harm, conflict and exploitation [41]. Several patients and carers in our current study sought out information and support online independently of advice or guidance from healthcare professionals. This highlights the need for healthcare professionals to guide patients and carers through available online resources to support evidence-based nutrition care and can present the opportunity to work with patients and carers to further develop online sources of information to improve access to nutrition care and support outside of the hospital environment.
For patients undergoing curative intent cancer treatment, there is an expectation to 'return to normality' at the end of the treatment period [42]. Studies have shown that normality can have a range of meanings from returning to life before diagnosis to creating lifestyle changes [21]. Several patients in this study looked forward to returning to work. While returning to work is viewed as a positive sign of moving on with life, it can also cause anxiety where patients still face difficulties eating and drinking, physical changes and fatigue [43]. Despite these challenges, some patients living in urban areas chose to manage their nutrition care independently. In contrast, some patients returning to rural and regional areas felt 'left behind' at the end of their treatment period. Studies have shown that cancer patients returning to rural areas can lack access to information and support [44]. Patients can struggle when moving away from their specialist cancer centre, highlighting the sense of security in being provided continuity of care [45]. Studies exploring psychosocial support needs of patients have identified a lack of information relevant to rural communities, with information and resources provided described as being urban-centric [46]. This emphasises the importance of understanding the unique informational needs of patients and carers and working with them to develop strategies to ensure they feel confident in being provided with continuity of care.
A strength of this study was the longitudinal study design to provide a greater understanding of patient and carer experiences as they changed throughout treatment and recovery. Furthermore, as participants were followed up by the one interviewer, rapport was developed over time which may have resulted in more honest responses in interviews conducted at later time points [47]. To reduce individual bias, reflexive analysis based on Gadamerian hermeneutic inquiry was used to develop understanding of patient and carer experiences. This included recognition of the influences that the principal investigator brought to the study and the impact on results generated.
Interviews conducted 2 weeks after treatment completion meant that patients having surgery and PORT were not interviewed in between the two treatment modalities. While purposive sampling was used to gain a greater understanding of experiences between different treatment modalities, a limitation of this study is that greater focus was inadvertently placed on patient and carer experience throughout radiotherapy. To gain a greater understanding of the experiences of patients and carers of patients having surgery, future studies should explore experiences prior to the commencement of further treatment. The study included a greater male to female ratio (3:1) of patient participants and greater female to male ratio (13:2) of carer participants. This reflects the gender distribution of the HNC patient and carer population but limited the opportunity to explore experiences of both roles from the perspective of the opposite gender. This study aimed to explore the experiences of patients and carers across a broad range of ages; however, in this study, the average age of patient and carer participants was over 50 years. While there is increasing incidence of younger adults presenting with HNC, our recruitment is also reflective of incidence rates increasing from ages 35 to 39, with rates further increasing with age [48] Overall while this study provides a broad overview of patient and carer experience of their nutrition care, further exploration of data collected may provide greater insight into differences in experiences between different modalities and may provide the opportunity to understand the impact of patient-carer relationships on the nutrition care experience.
Experience based co-design (EBCD) is a form of participatory action research that draws on the experiences of patients, carers and healthcare professionals to improve the quality of healthcare provided [49]. Findings from our study highlight the importance of further research using EBCD to facilitate collaborative resource development and service delivery changes to support nutrition care delivery.

Conclusion
This study highlights tensions in the care relationships between patients, carers and healthcare professionals in the provision of nutrition care, as well as the changing nutritional needs and focus of patients throughout their treatment and survivorship journey. There is a need to work with patients, carers and healthcare professionals, to co-design strategies to improve nutrition care delivery for patients and carers both during and after treatment for HNC. Strategies should consider practical and emotional support, offer peer support and be easily accessible outside the hospital environment and inclusive of patients and carers regardless of geographical location, stage of treatment or recovery journey and individual health beliefs.