In total, 64 participants were interviewed; 35 participants were from Australia and 29 from Hong Kong. Data were obtained from 20 patients (Australia n = 13; Hong Kong n = 7), 15 family members (Australia n = 4; Hong Kong n = 11) and 29 health care professionals (Australia n = 18; Hong Kong n = 11) (Table 2). There was a 1:1 ratio of patients consenting and declining consent, owing to being too unwell to participate.
Participant characteristics can be seen in Table 3. Patients had a mean age of 63–72.4 years, and 57.1–62.9% were female. The most frequently reported cancer diagnosis in Australia was breast cancer, and in Hong Kong was lung cancer. The most frequent malnutrition screening score in Australia was 0 or 1, while in Hong Kong it was 2. For family participants, all Australian participants were female spouses/de facto partners. In Hong Kong, most participants were female, and had a range of relationships to the patients. For health care professionals, 70–94.4% of participants were female, and were most frequently nurses across both sites. Australian health care professionals had a range of clinical experience, where most Hong Kong participants had more than 15 years of clinical experience. In Australian similar numbers of participants had been involved with a patient or family in the PIcNIC intervention; this was not the case for most Hong Kong health care professionals.
Participants expressed their perceptions of, and experiences with, participating in the PIcNIC intervention, in their capacity as a patient or family member receiving the intervention, or as a staff member delivering the intervention, caring for a patient who had received it, or providing opinions although not directly exposed to the intervention. Their responses formed two categories, which are described below. The redundant concepts for category 1 were: the intervention works in outpatient settings, the food diary is easy but needs to be tailored, the information booklet is a good resource, and the intervention should be delivered by a dietitian, but could be delivered by a nurse. The redundant concepts for category 2 were: a personalised nutrition plan is required, patient and family involvement in the intervention is valued and the intervention has benefits for patients and families. Converging and diverging perceptions of each redundant concept are presented below.
Category 1: context and intervention feasibility and acceptability
Our analysis shows that the intervention is most feasible and acceptable when delivered in the outpatient setting, by a dietitian, using the current information booklet and a modified version of the food diary (Table 4). Descriptions of the redundant concepts follow.
The intervention works in outpatient settings
The context in which the intervention was delivered influenced perceptions of intervention feasibility. For example, patients, families and health care professionals all noted that delivering the intervention in the inpatient setting was challenging for three key reasons. The first was that while in hospital, patients either felt too unwell to be able to participate in a meaningful way or, in some cases, patients were admitted for a short period of time (1–2 days) which made intervention delivery challenging:
‘It (education session) was good but I think I was a little bit tired, which I still am, and I just want it over and done with, so I could go to sleep. Sweetheart, I’m an old lady, I’m 72 years of age, maybe for younger people yes, but for me as I said, since I’ve been diagnosed all I want to do is sleep.’ Inpatient 1, Australia.
Conversely in the outpatient and home setting, patients may be in better condition to receive the intervention: ‘In outpatient or in home-setting I find … patient’s condition is quite better … [they] have energy to take this information.’ (Home Care Nurse, Focus Group 1, Hong Kong).
The second was that family engagement in the inpatient context was likewise challenging as, unlike outpatient- or community-based intervention delivery, dietitians could not set a specific time for intervention delivery because of competing work demands. Family members sometimes did not visit or tended to visit later in the afternoon or evening, after the dietitian had left for the day, which limited their involvement: “… it’s sixty-forty, sixty percent of families will have lots of family support and be very involved and forty percent you mightn’t even see anybody on the ward so it really just depends …” (Senior Nurse 1, Australia). Conversely in the outpatient department (Australia) or community setting (Hong Kong) it was easier to engage family or home carers in the intervention because specific times were set for consultation with the dietitian:
“… at the end of the day the majority of cancer patients are treated in the outpatient setting and we have thirty inpatients out of thousands on the ward at any one time … I think we get the biggest bang for out buck when we target interventions in the out-patient setting; the inpatient stays aren’t a part of everyone’s journey … we really need to be looking at the most appropriate setting for engaging family members and I believe that’s the out-patient setting.” Dietitian 1, Australia.
Third, nutritional goal setting, which was a feature of the intervention, was difficult for patients and families to enact in an inpatient setting where food choice was limited, and food options offered were inconsistent with patient preferences and/or symptoms: “If you have a lot of nausea … they don’t have any plain mineral water. They don’t have any ginger beer and all those things help people with nausea.” (Inpatient 2, Australia). Hospital systems, such as scheduled mealtimes, and rules which prevented re-heating food or bringing food in from home limited how patients could enact aspects of the intervention. These restrictions also made nurses ‘feel helpless’ (Nurse, Focus Group 1, Australia) as they wanted to encourage interventional elements but were unable to provide patients with flexible food options for their needs.
The food diary is easy but needs to be tailored
With reference to specific intervention components, namely the food diary, perspectives of patients and families differed from that of health professionals. Patients and families found the food diary easy to complete, described as “It’s not difficult to record.” (Outpatient 1, Hong Kong) and most were confident in their ability to assess intake and record this in the food diary.
However, these participants did request modifications. In Australia, participants requested more space for additional items: “I actually had water or a cordial extra … and even though that’s minor, it’s in my day … probably more area for fluid intake because I don’t just have water. I have cordial or tea and coffee.” (Inpatient 3, Australia). In Hong Kong some participants had preferred to write out foods on a blank form, because the pre-selected items did not accommodate their range of food choices: “… it all depended on the patient’s family diet habit. If the family did Chinese cooking, it [food diary] would be useful.” (Family member 1, Hong Kong).
Conversely, health professionals perceived the food diary to be too complex, lengthy, difficult and burdensome for families, leading them to believe completion rates would be low. They also questioned the value of information provided in the food diaries given that it was not able to accommodate a full range of food choices and lacked portion size estimates:
“this record sheet seems to be a bit lengthy … actually quite difficult for them to go through. For usual patients or some usual caregivers in our district. Most of them might not have that kind of intelligence in filling [the form] … it really depends on the educational level … There may be some potential difficulties because in this written record usually is very difficult to quantify the amount he is taking.” (Doctor 1, Focus Group 1, Hong Kong).
The information booklet is a good resource
Dissimilar perspectives were observed in relation to the nutrition booklet, another specific intervention component. Patients and families described the nutrition booklet as having ‘aspects of nutrition information [that] were useful’ (Family member 2, Hong Kong), and ‘ … something you can always read back on if you need to get some more information later on.’ (Inpatient 4, Australia):
“It was very informative actually. Yes. I understand a little bit better how to eat. I was eating proper I thought, but no. It’s helped me a lot.” (Inpatient 3, Australia).
Overall, health care professionals were neutral about the value of the education resource and provided more specific printed material to the patient to supplement information provided in the nutrition booklet. Some dietitians placed more value on their verbal interaction with the patient and family.
The intervention should be delivered by a dietitian, but could be delivered by a nurse
In the context of this study, the intervention was able to be delivered as planned. There was general agreement amongst health professionals that the intervention would be best delivered by a dietitian. However, in the Hong Kong setting, home care nurses were best positioned to deliver the intervention as they already visited patients in their home regularly, had the knowledge and skills to talk to patients and families about nutrition, were consistent across the continuum of care, and had existing relationships with patients and families:
“If it is outpatient, I think the home care nurse will be the best person, if they are equipped with enough background knowledge … they will go there every time, many times during the whole trajectory of the patient … I think talking about eating, talking about diet, is one thing that can engage patient and family in it.” (Doctor 2, Hong Kong).
Participants recognised that nurses may require additional nutrition-related training from dietitians to ensure delivery of consistent messages and needed to be able to refer more complex cases to an outpatient dietitian:
“I think that a dietitian can teach us some simple assessment tools and education to give the patients and caregivers. For the complex cases, we can refer the patients to the dietitian for further intervention or advice.” DOM Nurse, Focus Group 2, Hong Kong.
Conversely, in Australia, dietetic care was available for both inpatients and outpatients, and it was suggested that “… it could be the dietitian or the nutrition or allied health assistants that deliver that initial intervention.” (Dietitian 2, Australia). Although in the inpatient setting, dietetic resources were scarcer and delivery of the intervention in partnership with a nurse was considered potentially beneficial.
Category 2: benefits of patient- and family-centred nutrition care
Our analysis demonstrates that the intervention enhanced patient-and family-centred care by enabling individualised nutrition planning and patient and family involvement in care; and provided benefits to patients and families (Table 5).
A personalised nutrition plan is required
Tailoring of nutrition care by the person delivering the intervention was valued by all groups across all settings. Patient and family participants believed that nutrition education and goals should be tailored to the patient and liked the fact that the intervention allowed for adaptation to patients’ dietary preferences and habits, consistent with their background or culture. Intervention acceptability was exemplified in a comment from one patient who expressed feeling more ‘comfortable’ because the intervention was ‘made just for me’ (Outpatient 4, Australia). Others appreciated the follow-up after the initial education session, describing this as an opportunity to discuss any ‘problems with meals’ (Outpatient 2, Hong Kong) and to ask any clarifying questions. This view was supported by health care professionals who believed nutrition education and interventions should be tailored to patients’ and families’ needs, values, disease stage, dietary habits and preferences.
‘We really need to assess them [the patient] individually, based on what is the [disease] stage and what their current eating habits [are] … .before you can implement and make [a] suggestion … there’s no formula that fits everyone … .’ (Doctor 2, Hong Kong).
In Hong Kong, it was suggested that tailoring of the intervention should incorporate beliefs about foods. They explained that in Chinese culture, people may have ‘strange’ (Doctor 2, Hong Kong) beliefs about food and link eating with prognosis and survival; and the taste of food may be more important than nutritional value.
Patient and family involvement in the intervention is valued
Patients reported increased feelings of support, encouragement and assistance with family/ caregiver involvement. As one patient commented, “It’s just support and, you know, not feeling as if you’re on your own and that you’ve got a big job to do – that you can share it with somebody.” (Outpatient 10, Australia). Families helped with remembering information during the dietitian consultation and implementing positive nutrition practice at home. Several patients said they relied heavily on their family members for nutrition, as the family had been ‘cooking food and bringing (me) snacks’ and that they ‘wouldn’t eat’ without the family member’s assistance. Families were also able to support the patient during the education sessions by re-wording difficult phrases or extracting more detailed food recalls from patients to provide more comprehensive nutrition intake information. “… I was asking a lot of questions, because my husband really couldn’t remember from one minute to the next. … I know he wasn’t eating because the ladies who bring the trays in would say he hadn’t touched it.” (Family member 1, Australia).
Health care professionals also valued family participation, acknowledging the important insights family members brought to the nutrition consultation, emphasising that families ‘know the patient much more than health care professionals, or even dietitians. So, it’s easy for them to choose the kinds of foods the patient would like … according to their culture, or according to patient preference … ’ (Nurse Consultant 1, Focus Group 1, Hong Kong). Including patients and family members as active participants in discussions about specific foods and nutrition goals was viewed as important by dietitians, as they thought personalised nutrition care would ‘help the patient longer term’ by allowing them to understand the reasoning behind food suggestions, and that this would lead to more sustainable health practices (Dietitians 1 & 2, Australia). Further, involvement of family caregivers was seen to increase provision of accurate information (such as the diet history) in sessions where family were present, and nutrition information delivered to family was seen to increase the likelihood of recommendations being implemented at home.
‘We need the input about the set goal for that family. Because they know the preference about the patient. They know the tolerance of diet. They take care [of] the patient daily, they know everything about the patient. Maybe they [can be] involved in the setting of goal. Not … calories and protein, but. … to choose what kind of food, the meal pattern, and the whole planning.’ (Dietitian 1, Focus Group 1, Hong Kong).
There were some negative perceptions to family participation in Hong Kong. Families reported inability to achieve their nutrition goals, most commonly due to patient fullness, and in turn patients reported declining food and/or being forced to eat, which could result in conflict: “The nutritional plan was to have small frequent meals; sometimes it was possible to follow the plan but not when my mum was full.” (Family member 3, Hong Kong). Similarly, Hong Kong health providers commented that families could become very distressed when the patient was not eating well, which could result in them not listening to patients’ wishes (e.g. force-feeding patients), causing unwanted conflict between patient and family: “… sometimes conflict with the patient. They want to push the patient to eat more, get more nutrition, get better, but the patient says, “no I have lost appetite, I don’t want to take this.” (Ward nurse 1, focus group 1, Hong Kong). Finally, some patients in Hong Kong had domestic carers and health care professionals questioned their ability to provide the same benefits as family engagement in the intervention.
The intervention has benefits for patients and families
Learning was the main outcome perceived from patients and families in this study. At both sites, patients and families learned about the importance of protein for cancer patients: “… it pointed me in the right direction as far as high proteins … it was really good to refresh my memory as to what was important nutrition wise.” (Inpatient 5, Australia). Australian patients/families reported broad outcomes like new perspectives and heightened awareness around nutrition. In Hong Kong patients/families spoke about more specific learning around food choices, the importance of small frequent meals, portion sizes and food preparation for symptom management: “Before meeting with the dietitian, I misunderstood I could eat 4 tael [Chinese weight system] of meat per meal; I therefore ate a total of 12 tael of meat for 3 meals until the dietitian explained, I should separate the 4 tael of meat into 3 meals instead.” (Outpatient 3, Hong Kong). Many Hong Kong families stated after learning, they changed their food practices and choices to encourage dietary intake, and this was perceived to increase patients’ intakes and weight as a result.
In addition, myths about foods perceived to either be beneficial or harmful for patients with cancer were dispelled. Family members/caregivers reported an increase in nutrition knowledge and confidence in selecting foods following the dietitian consultation. In turn, relationships were also strengthened when patients and families addressed nutrition care as a team, with the wife of one patient stating they were ‘agreeing a lot more [on nutrition]’ (Outpatient 14, Australia). Several participants said they had been including a larger variety of foods in their diet since being involved in the intervention and had introduced ‘all kinds of foods’ (Outpatient 8, Australia) that were previously perceived to be off-limits: “one relative commented that that’s very good … because she knows how to make some different food for the patient. And she was surprised that the dietitian taught her to give … Horlick and sandwiches to the patient, she’s surprised that she can try to give this, not just only rice, or congee.” (Nurse 1, Focus Group 2, Hong Kong). Patients described the added support family members could provide when they were challenged by well-meaning people to adhere to a diet that aligned with cancer food myths such as, believing certain diets such as Gerson, alkaline or ketogenic diets cure cancer, because their family member had similar nutrition knowledge from attending the intervention. However, in Hong Kong, some families still reported diet-induced conflict and continued to hold their preconceived ideas about what foods were off-limits for patients with cancer.
Staff perceived many benefits for families participating in the intervention. Families were seen by health professionals to be ‘more informed’ as it “brings to the forefront that dietary requirements are important” and in turn, families made nutrition decisions based on the ‘right information’ after attending the sessions (Nurse, Focus Group 2, Australia). Staff thought ‘giving family members something to do’ (Doctor 2, Hong Kong) around nutrition served to manage distress experienced by family members of a patient diagnosed with cancer: “… eating” also not only for the food, also for the whole family, not only for the physical symptoms and also [to] treat the psychological. Because the family thinks that if [the patient] cannot eat, maybe the survival time is decreased.” (Nurse 2, Focus Group 2, Hong Kong). For many, this was seen as the most important outcome – even more than actually increasing nutrition intakes:
‘Our goal is not [to] emphasize too much about calories and protein, but we realized … many family members are quite stressful [sic] about preparing food … . So, I think nutritional advice can help them to choose foods that are tolerated by the patient that … so they can enjoy the food … that can help to release the tension … relieve the pressure of the both family and patients.’ (Dietitian 1, Focus Group 1, Hong Kong).
Likewise, family members highly valued the dietitian teaching them how to prepare different foods for patients to tolerate and enjoy, which helped manage symptoms and enabled them to meet their needs and preferences. This learning provided a role for family members which reduced stress for both the family and the patient: “In fact, your study, your support is kind of psychological support more than physical support to the patient … this is how I would describe our present family situation” (Family Member 4, Hong Kong).
