A total of 29 NHB and Hispanic people affected by cancer were enrolled in the study. The average age of the participants was 55.3 ± 11.03 (years). Most participants had stage 1 (48.2%, n = 14) breast cancer (82.8%, n = 24). Duration since a cancer diagnosis was 2.5 ± 1.68 (years). Saturation of themes emerged around the sixteenth interview; however, data collection continued to include all consented participants. Characteristics of the participants are given in Table 2. Themes and categories with representative quotes are shown in Table 3.
Table 2
Characteristics of participants
n = 29 | Mean SD | Minimum-Maximum |
Age (years) | 55.3 ± 11.03 | 37–73 |
| n | % |
Sex | | |
Female | 27 | 93.1 |
Male | 2 | 6.9 |
Race and Ethnicity | | |
African American, Black | 16 | 55.2 |
American Indian or Alaska Native | 2 | 6.9 |
Hispanic, Latino or Spanish Origin including Puerto Rican | 11 | 37.9 |
Cancer Type* | | |
Breast cancer | 24 | 82.8 |
Colorectal Cancer | 3 | 10.2 |
Gastrointestinal cancers | 2 | 6.8 |
* More than one cancer diagnosis | 4 | 13.8 |
Cancer stage at the diagnosis | | |
Stage 1 | 14 | 48.2 |
Stage 2 | 8 | 27.6 |
Stage 3 | 5 | 17.2 |
Not reported | 2 | 6.9 |
Time since cancer diagnosis (years) | 2.5 ± 1.68 | 0–6 |
Marital status | | |
Single/ Divorce | 13 | 44.8 |
Married | 15 | 51.7 |
Not reported | 1 | 3.4 |
Educational level | | |
Some High school | 4 | 13.8 |
High School | 4 | 13.8 |
University and above | 21 | 72.4 |
Employment status | | |
Employed | 15 | 51.7 |
Not employed / Homemaker | 11 | 37.9 |
Retired | 3 | 10.3 |
Health insurance | | |
State health insurance | 13 | 44.8 |
Private insurance (with or without state insurance) | 15 | 51.7 |
Other (i.e., senior plan) | 1 | 3.4 |
Table 3
Themes, Categories, And Codes With Exemplar Quates
Subthemes | Categories and Codes | Exemplar quates |
Theme 1. Impact of cancer diagnosis on oneself |
General effect of cancer diagnosis | Disruptive impact - Constant effort to look normal, healthy, or strong - Constant reminders of cancer diagnosis (i.e., symptoms, scars, limitations) - Anger for the losses and changes due to cancer (i.e., loss of a job, financial stability, body strength, body image, emotions) - Fear of recurrence (specifically around hospital visits) | “And I'm like saying, I'm not strong, I'm not okay, but I have to wear this personality that doesn't let people know that I'm screaming for help that I'm not okay, because that's...so that's where I'm at.” (ID#22) “At the age of 34, which has been troublesome for me for the most part, and it's been a rough road since then, just from in terms of I've gained a lot of weight since I had that last surgery, I think I've gained probably like 160 pounds in that timeframe. And my lungs are still not good from the pulmonary embolisms because they had those two. And then, while I was recovering from one of my surgeries, I had another one. I struggle doing simple things that you know that I could do” (ID#25) “The doctor keeps saying oh the chances of reoccurrence for you is very low. And they keep saying that, but it's like it's not really sticking in my head. You know? Yeah. Every ache and pain, you go to a dark place you like Yeah. Yeah, you know, they see you at your yearly appointment. And they have this list of questions they ask you and you check it off. And then they like poke you around. And then they say, Okay, see you back in six months? And it's like, what? So my life is on hold.” (ID#16) |
| Enlightening (Growth) impact - Living life with more gratitude - Being closer to God (or spiritual maturation) - Having more time for self-care and things to enjoy - Finding new ways for a healthy life | ' The only thing that um that cancer has changed is that I look forward to life. You know what I'm, saying I take advantage of my grandkids, I take advantage of seeing my kid. I take advantage of stuff like that.” (ID#19) “And it's like, you're constantly reminded, and, yes, I'm thankful that I'm alive. But there's always that thought in my back of my head of reoccurrence. And I find myself like, spoiling my kids in this. And think about the consequences later, which I should not. And now it's even harder because of the economy, I can't really do much. But it's like, you know, hugging them or telling them I love them more praying to God, I see them graduate, you know.” (ID#16) “Well, I find myself in the years since this cancer now of eating more better by this, it feels better, food tastes better. So the challenges would be to just know that you're special, your body is good. You know, it's something that you have to take care. So those are the challenges you really have to know. Especially if you're age, if you're age, you have to realize that now's the time to really take care of yourself. And so that's the challenge. I didn't realize that and they're out there, the resources are out there. The community resources are out there.” (ID#21) |
| Feeling of indifference Living life without thinking of cancer Feeling of being cancer free | “I mean, now it feels largely like it's, it's resolved, it's in the rearview mirror. I still feel myself having stress when I have an appointment with an oncologist coming up as a checkup or kind of around the time of diagnosis in the year, that sort of anniversary of it, but other than that, I don't notice it too much. The one sort of, well, the two the two large reminders that our that our sources of stress are one that I'm taking, I'm taking Anastrozole.” (ID#19) “You don't really think about your cancer diagnosis during a day. And so, no,, I don't even think about it. I feel like I live a normal life. And I'm very happy and thankful that it was discovered like so early, and I'm still here.” (ID#27) |
Theme 2. Facilitators and Barriers for health and health behaviors |
Factors surrounding access to care | Facilitators - Health insurance - High socioeconomic status (i.e., income, education, job) - Self-advocacy - Good relationship with healthcare providers - Social or familial support (i.e., religious leaders, family members, support groups) | “I've kind of two minds about it. I feel like I am receiving adequate care (for lymphedema) and I feel like I'm receiving good care. I feel like my occupational therapist that is sort of following me now is actively checking in with me about how I'm doing. Are there different garments that she would suggest? He recently suggested since my insurance will cover it, to get tailored garments and said that was likely to make things better? But I mean, I just have a lot of stress and anxiety about what if it continues to get worse? And there's nothing anyone can do about it.” (ID#20) “I definitely wanted to make sure that I was getting what I need, I’m getting the most - maximizing the resources available and making sure that the doctors are doing their absolute best to make sure that I am okay. And so I held them, I still hold them accountable for that, but luckily again they were very responsive, it was like I had to advocate, you know, and what if I wasn't a person who was comfortable doing that?” (ID#2) “As a black woman to just to Just be more educated and understand the resources that are out there. But you won't know unless you talk with people and really put yourself in those situations. And sometimes fear can get in the way, because you're either ashamed or you know, you think something is, and initially, that's how I felt like, but got over it.” (ID#12) |
| Barriers - Limited health insurance coverage - Low socioeconomic status (i.e., income, transportation) - Neighborhood, its composition, and available sources - Other health problems (i.e., mental health problems, physical problems) - Lack of contact, constant change of healthcare providers and long waiting list - Feeling left out from healthcare services - Lack of knowledge about sources - Personality (i.e., being introvert) - Personal preference for not using medications (and medicine focused approaches) -Fear of racism, stigma and fear of having their symptoms being dismissed in healthcare settings (i.e., due to neighborhood, race, weight, body image) - Thoughts of being a burden to providers to seek help (they are already busy) | “There are things that I don't do, because the out-of-pocket cost is going to be a problem. Yeah. There have been times where I didn't fill a prescription (blood thinner) because the prescription is $40 a month, there have been times where I you know, I skipped a prescription and kind of stretched my medication a little longer.” (ID#25) “I um not sure about a question because I don't really know of anything (support sources) I tried one time for financially, cause you know every time you go to the doctor you gotta pay and all those bills and I traveled I didn't get to because they say that. They use both our income and they do gross not net. So after they don't, after all those taxes that they don't do the net they do gross. So you can get no help so sometimes I will look for help but within myself I said maybe they're not gonna give it to me because they're gonna say I'm working, my husband working.” (ID#7) “I'm able to still do it with the help of my son. But it's a hassle because when I used to go to CVS, not to mention that it was a, you know a little journey because it's-it's not close. The only pharmacy that is close to here is Walgreens and it's a walk. Um getting there and finding out that they don't have the medicine is kind of overwhelming.” (ID#10) “Well, this neighborhood is more, the ethnicity is more of one culture, than my culture. So I just I don't want to stick out like a sore thumb. And I, I don't want to do that and then if I go seeking for for help in an area where the ethnicity, ethnicity is more my ethnicity then I'm going to probably be viewed as needy.” (ID#22) “I don't know of any sources. I really don't like go out and beyond and try to, like, I'm not a daring person to seek for help. And I don't think that, I don't want to waste other people's time with me, because it's not there, they have other patients that are important, so I don't like to bother other people or trying to seek help….. It's just hard for me to go and look for resources. And yeah, I just don't know, you know?” (ID#22) “It's hard to me to get to appointments and stuff like that. I know there's a program from MassHealth, but I haven't spoken to them. It's a program. They transfer you to your appointments and bring you back home, which will be a good thing for me because since I have anxiety and panic attacks, you know, when my daughter can't be there all the time.” (ID#19) “For the side effects some time is greater than what you're taking it for. So if I honestly, but I said okay, so they gave me pills. But I take it but I'm not gonna live taking those pills live taking them. Because I feel sometimes the side effect just says, I lost so many pounds in a couple of months from May until now. Instead of taking those many pharmaceutical medications, they more do herbs. We do herbs. We grew up on that. So, and here, you're not gonna get some of them. You gotta get it from the home from Jamaica.” (ID#7) “I will be honest with you I was in such a bad shape that I decided to go to Mexico to get treatment .... I don't know the name of it, but he did two things... and I haven't told my doctor, yet I have to tell him. This was advice to me from another cancer patient that's older than me. He took my blood, my own blood and he created um, he spined it and he put it back in my body, in my body. It helped everything, I walked out of the office with no pain. So, it worked for six months.” (ID#6) “You know, it was very, I think I got tired of the stereotype. But it's definitely every time I went to, like, my appointments. It's very common in African American women, you always keep hearing that type of like cancer in general, very heavy in African American women.” (ID#12) “Every time I see a new doctor, I have a fear over whether the doctor will believe my symptoms and figure out how ways to, you know, to do what they can or to suggest, I'm really sorry, rather than just dismissing them. That concern is really grounded in my race, as well as my gender and I just yeah, every time I go see a new doctor, the question is, like, are they gonna believe me? Are they gonna dismiss me? If I feel like I am getting dismissed, am I just going to stick with it? Or like, do the work to try and find another doctor? What am I going to do?” (ID#20) “Right now, I can't. i just, I just I don't know enough, I guess I just don't know enough to, to know what to want exactly. I don't, I don't want to I don't know enough to say this, this is important. I need to do this. Because I don't see it that way.’ (ID#22) |
Factors surrounding desired physical activity and exercise | Facilitators - Having established active life and available sources before cancer diagnosis - High socioeconomic status (i.e. income, education, job) to choose safe place to exercise - Neighborhood (and workplace) with available and accessible sources - Having a support group (i.e.. MOCHA, church) or family member encouraging | “I have to exercise almost every day and some days I exercise twice a day. There are some exercise things that I do, that I can't stand, but I know they're good for me and there were some things that I absolutely love so i've been doing it for 15 years and Now, for the past five or six years I’ve been doing fencing.” (ID#4) “It felt really challenging to just walk into a gym because I felt like I would be judged for being black, for being fat, for being weak, having cancer and for being weak because of that. And luckily, the places that I chose to stay and work out were, you know, those fears were alleviated, but that's always, as a black woman that's always in the back of my mind, is, is someone going to say something that immediately makes me feel like not part of the group is, is you know, so that's in that feels particularly tough, we’re in like a gym, where there's typically an ideal body type that I could not fit, no matter what I did. So yeah.” (ID#20) “It's because we have a big parking lot at work. So on my lunchtime, I have an hour. So if the weather is not humid, I'll walk for a half an hour, 20 minutes after I eat and then I'll walk. Our office is actually big enough too that if the weather is not good. I can actually do a couple of loops in the, in the hallway.” (ID#8) “Like MOCHA is called men of color health awareness. I'm a member of MOCHA. It's good that you can get together and talk with individuals who have may have gone through some things like what I've went through, so we do that as much as possible or when, when we come together, we always speaking on uplifting. So we have that and then we have the facilities such as the Y, where you can just physically work out. And then on your personal time, you can get one of your friends, or girlfriend or just go..” (ID#21) “All of them really relate to community programs that, I have through my church. So I have an outlet, and my friends. So like, we will join up and go for a hike in New Hampshire or go somewhere. So those kinds of things, and I know I am the lucky ones, because I know there are some other people who will not be able to afford to do that.” (ID#30) |
| Barriers - Low socioeconomic status (i.e., income, transportation) - Fear of being stigmatized (i.e., due to ostomy bag, mastectomy, race and weight) - Mental health problems (i.e., depressive mood, anxiety, PTSD) - Cancer related symptoms preventing physical activity (i.e., pain, neuropathy, lack of energy) - Other chronic health problems, not related to cancer (e.g. knee disease, back pain) - Neighborhood composition and available sources (i.e., unsafe, limited place to walk or exercise) - Feeling of being a burden to others (due to limited functioning) - Lack of motivation (due to personality, lack of friends or accountability partner) - Workplace environment (e.g. sedentary job) | “I don't have free ones (gym) I have to pay so I know that that's usually a challenge and especially more now than never before. Yeah, so that's yeah, so that's one of the things that I know otherwise, they (a community program) have a lot of physical activities that you can do but again the fee is you know the membership fee and all that is a lot actually I'm in the process of of canceling mine because I am like I can't afford to continue paying for that.” (ID#30) “I-um, there are a lot of things I cannot do because of the neuropathy. And I-I feel like a less than person, you know, it's like, oh, I can't do that. Or um, I can't walk as far as you want to walk. And as far as I would like to walk, but it's just, it's so painful. Also, several times I've been mistaken for a man. You know, my hair is growing out, as you can tell. But it's short still. And I don't have breasts. So I would have like a T shirt or shirt. So people, I don't know, I guess people, I guess it turns out that people the first thing they when they're assessing you. It seems that some people look at your chest first. So that's something. But it's not, it's, I don't care.” (ID#13) “I mean, obviously there are the mental blocks that come along with just the insecurity of of being like this. And then, you know, I mean, other than that, the physical limitation of you down struggling to breathe and that sort of thing. Those are really the only limitations, you know, and like I said, the insecurity that comes along with being seen by other people. If I didn't struggle with that, and then if I didn't struggle with the ability to breathe, I would, I would just do it.” (ID#25) “So I leave the house like lunchtime to go for a walk, and then I start to get paranoid watching the news, hearing things in the neighborhood, and don't want to go anywhere I see. And so I stay inside, Whereas at work, I would have walked around the building a few times. And do things like that with a coworker, or by myself. And when I'm home, in my neighborhood I wonder if something happens who would help me, because of the things I'm hearing on the news, and it just worries me.” (ID#16) “That's why I um dispute everything. Because they say that I'm doing much better, that I'm doing good, but I don't feel good. Um who likes to be dizzy all the time? Who likes to be fatigue? I mean, I sit here and I can watch one, two, sometimes three movies. And I'm thinking about getting up and go lay down but my body doesn't want to lay down. But I'm fatigued” (ID#10) “It's a struggle. It's a struggle. I'm a receptionist. So I sit all the time. And I don't, I can't leave my station unless I go to the bathroom, or I have to go deliver a package or something like that, which is rare. So I sit there and I try to do my chair exercises while I'm there. But I don't know, I can't. I can't, I don't know how to get my body to do something.” (ID#11) |
Factors surrounding desired eating habits | Facilitators - SNAP program giving access to fruit and vegetables - Cultural and familial influence on cooking and eating - Support from neighbors and friends - Neighborhoods with available gardens and a source of healthy cooking | “I can get on vegetables and all that stuff and even the SNAP program, you buy fruits, certain fruits, so many times a month, they even pay you, they even give you a stipend, to get more fruits and stuff.” (ID#19) “I'd “Because I understand the value of a fresh meal. I grew up with a fresh meal every day, not store brought frozen. That's no... and growing up I'm going to give that to my kids, and I did. Very seldom, very seldom only on a need basis did we ever eat from the fridge... from the freezer. So, I think that that's good. You might have patients that rather than look forward to cooking. I just want to learn how to do it differently.” (ID#6) say so the culture is like this I have a like the grocery stores five minutes away there's no excuse but it's just I don't like I don't like going to the grocery store. Now like the other day I saw like a fruit stand and veggie stand so I stopped by and I bought some fresh corn and things. I saw a fruit stand so see I don't mind stopping by, but it's just a grocery store.” (ID#24) “Here's no, there's no, there's no food access limitations, if we want to, you know, go to the farmers market or whatever. The It's nearby, it's the food there is not expensive. There is a grocery there to grocery stores very close to our home. My husband works right next to a Trader Joe's as well. So you know, the access to decent and quality food is not a hardship for us, thankfully. And we are able to afford food without difficulty But because we prioritize paying for the home, paying for food, paying for the vehicles, and those sorts of things, to disposable income to pay for the extras, gym memberships, and that's where that's where our financial limitations come in.” (ID#25) “Because we have a farmers market here. I think it's supposed to end this month, I believe it is. Yeah. And I have to check to see if they have anything during the wintertime. Yeah Well I don't know, if anyone lives in like a facility like I am, like, the housing complex. Sometimes they have things on-site that you can get access to, because they have a billboard, and you go there. When I go pick up my meal, I look at the billboard. Yes, and see what's going on in the community, stuff like that.” (ID#15) “So my good neighbor downstairs is a VJ. And we go and she talks to me all the time about this, she's even supplying me with certain things (from her garden) just so that I care. Yeah. So and I try to support her in her lifestyle too. So it's not like I don't encourage it or try to do it.” (ID#12) |
| Barriers - Socioeconomic status (i.e., income, transportation) - Cultural and familial influence on cooking and eating - Household composition (absence of anyone or having others with different eating preferences) - Health problems requiring a strict diet (ostomy, gluten-free diet, food allergies, diabetes, Crohn’s disease) - Lack of appetite (e.g., mental health issues) - Lack of restaurants, markets with healthy options in the neighborhood (i.e., culturally desired food) -Lack of knowledge on eating and cooking healthy | “It's expensive to eat healthy. I mean, it's-it's very expensive, you know, and so even when I go to the grocery store, I buy the bad foods, because it's quick and easy. And you know, I'm not a big vegetable eater. I-I'll do a salad. I like a salad. But I'm not. And I like the bad vegetables, corn. It has no value, but it tastes delicious, and I eat it all the time. And so, I have frozen vegetables in my freezer right now. And I-I make an attempt, I'm failing to make an attempt to do the right thing.” (ID#11) “To tell you the truth? The income part sometime can affect it? Because sometimes you may need stuff you don't have the money at the time to buy because as soon as you get paid if its not a bill or a doctor bill, yeah. So sometimes that that will affect that the effect of adding stuff. Because there's okay, if I buy this spinach? No, maybe this week, I'm out of spinach. As for now, I don't have any spinach, or kale, and I don't buy afterwards until I get paid again, before I go and buy stuff.” (ID#7) “That's a hard, that's a hard one only because when I was younger my mom would give me you know my brother's vegetables. I, my taste buds just did not like them. We try very different vegetables. I just never never liked them. So when I was younger, even into my teens in my 20s there were, I was not a vegetable eater. The only thing I eat is salad and that's lettuce, scallions, and if you put maybe some peppers or fruit in it, but I am not a vegetable eater and that's a downfall, but I don't know how to change it.” (ID#8) “Well, I'm 53 years old. But um, the only thing that I will say is the area everything is far from here. And transportation is a big key. Which um I'm trying to buy a car but it's hard to save with these days. Everything went up.The economy ya huh. You know I mean you go to the supermarket we 200 dollars and you walk out. Seriously, you walk out like with three or maybe three and a half bags of food. And um and-and because I get stamps. There go the stamps. Now I gotta dig into the cash.” (ID#10) “Latin Puerto Ricans, we're not used to eating healthy when we're growing up. We're used to eating rice and beans and chicken and pork and all kinds of stuff, you know. So I don't know, what is a healthy meal to me. Because I wasn't brought up like that. I'm brought up to eat rice and beans and meat. You know, and you could drink soda all you want. And you could do this, then you can eat ice cream. And you can, I don't know what it is to have a health, I don't even know what it is because I didn't grow up like that. And my kids are not like that either they eat everything that I eat, because I raised them the same way.” (ID#19) “Prior to breast cancer, I ate a decent meal. Like I eat more home cooked meals. But with the Caribbean dishes tends to be starch, like rice, and, you know, things like that. And I started watching how I'm eating afterwards, you know, I was told the Mediterranean diet, but that diet can tend to be expensive. In some cases, and I think for a while now, I just I think I gave up and I just started eating whatever. And I don't know what it is. I just got tired of thinking about an inmate eat whatever is there. “ (ID#16) “…..It has been difficult, and I want to lose weight. But it's a challenge. Okay, so I also have some food allergies. So most people, you know, like I never said, eat salad and vinegar allergy. So most people have salad dressing. I don't, I just don't eat. So I don't eat a lot of lettuce or, you know, carrots, or my favorite one of my favorite vegetable. You know, I just don't. So having a dietary plan or some support around that would probably help.” (ID#17) “But I didn't realize there are 29 grams of carb in a small container of yogurt. So I, and a small containers not the filling. So I do have a problem in the morning having a breakfast that is suitable for the diabetes and the Crohn's, that still makes me feel full. So, that's kind of a challenge. And usually for lunch I, I guess I don't really have the best nutrition management going on, because I don't have, I really should have lunch at a regular time. And I don't. Sometimes I'll wait till like two o'clock.’ (ID#9) “No I think, you know, my daughter is now is back home because of the pandemic. And she's been with us. So anyways, sometimes it's hard if you want to make a change, and the other two don't want to Oh, yes. And it goes other ways, too. If they want to make a change, and I don't want to. So it's like that. I think that's probably preventing.” (ID#24) |
Theme 3. Utilization of available sources for health |
Needs and Desired sources and services for health | - Better symptom management - Continues care beyond a cancer diagnosis - Individualized education, educational sources and coaching specifically for the post-treatment process - External motivations (e.g., accountability partners) - Having more diverse providers, sources with their background (i.e. same race/ethnicity) - Tailored sources, care, and services (i.e., realistic eating/diet education) - Environmental arrangement (e.g., park to exercise, restaurants for healthy eating) - More accessible sources (e.g., telehealth, culturally tailored) | “It shouldn't just be the suburban communities or the rural communities. Every community should essentially be, in some ways, offer the same resources, especially if the whole goal is to create healthy people period, whether they're a person of color or not. And that's certainly missing. I mean, though I live in Springfield, I'm a homeowner, I have a car, so I can drive to other communities and get what I need or feel like “ (ID#2) “Supporting and reinforcing various things (food) that don't help, you know, because you think about organic food, but what is really organic, and how do these things affect? Cancer? What can you avoid? And how can you replace some of the things that you enjoy? steak or whatever the case is? How can you? What can you replace that with?’ (ID#17) “No, I would like for somebody to walk me through it. I'd like to physically talk to somebody, either on the phone or on the computer, listen, let's do a weekly meal plan, buy this, buy that buy that, I buy it, and then I'll eat it. But if they told me one time, and they're not on top of me. I'm gonna do it my way. I don't care how many flyers you give me, I need a physical person to speak with me.” (ID#19) “In fact, if I can get someone to teach me like a dietitian number one, the right things to eat to control whatever. I would say like simple physical activities, because even though my doctor said to do not do too much strenuous exercise and stuff like that, where you know you need somebody to say okay, I can do such and such a thin.” (ID#7) “I mean, I feel pretty, pretty motivated and empowered to make changes for health. What I would really like is, and I don't think this thing exists except for like paying a life coach or something but for someone to examine my day, and say, okay, here's what you want to do like, here's when you do it, here's how you make it happen, like, it took me a really long time to figure out how I could reconfigure my life to get to the gym more than once a week. Like, what were the other things that I was doing that I could move around or like how do I actually make this happen? And I feel like there's not a lot of support for that because it needs to be tailored to each person.” (ID#20) “I mean, honestly, if there was some sort of resource available that was low cost, that a person could work privately with someone else that understood a person's limitations and allowed them and guided them towards those small benchmark goals, that would that would be ideal to have some, like one on one low cost partnership, would more than likely be something that was it would be would be something that that would, that would realistically, work for me. But I know that even having a one to one is obviously going to always be expensive. There's so unfortunately, that doesn't seem reasonable or likely.” (ID#25) “Wouldn't it be great for each cancer patient that if you get cancer, don't worry, it's gonna be a tough journey. But we as a country, we have a cancer package for you. We have the meal plan for you. We definitely have the transportation; we have exercise close by your neighborhood to help you be healthier. And I I think other European countries, they may have these things that we don't have, who knows I've never researched it, but that would be something so nice and so less worrisome for cancer patients.” (ID#16) “What I'm thinking of, that I wish I can get some information to how to go about is being able to go to a place every day. So I can mingle with other people. And um if they got a big yard or car game, or so. To participate in some kind of activity Every day, for maybe five hours or whatever” (ID#10) “If I could find sources that gave me motivation, then my motivation will be to change and change will do what it has to do and then I have a normal life. If I get physical source, that, you know, because I got a computer, I mean, I could speak to people online and if I could find sources, I think my life will be better. I think it will give me some motivation to change. Well, you don't get no sources, you aren’t gonna do nothing. I think you just you just you sit there and your life just go, just like wasted. Sometimes I feel like I'm a waste of space, which I shouldn't feel like that but I do.’ (ID#19) |
Theme 1. Impact Of A Cancer Diagnosis On Oneself
This theme includes participants’ most dominant feelings, perceptions, and thoughts about the general impact of a cancer diagnosis on their lives and view of living. This theme focuses on the continued impact of a cancer diagnosis.
1a. General effect of cancer diagnosis; The most dominant response of participants was not exclusive, but one of the following three ways: disruptive, enlightening (growth), or feeling indifference.
Disruptive impacts of a cancer diagnosis and treatment were expressed as long-term uncontrolled symptoms, fear of recurrence, unwanted changes in employment, appearance, emotions and feelings, sexual life, intimate relationship, perception of support from family, friends, and life enjoyment. Most women who described disruptions expressed concern and anxiety about being obliged to look normal and healthy, frustration with managing cancer-related symptoms, and constant reminders of the cancer diagnosis and treatment.
Some participants expressed disruptions in their ability to tolerate physical activity and maintain the desired eating habit or their energy, joy, and positive feelings about life after a cancer diagnosis. One woman who had to change her job and felt tired and weak all the time expressed her frustration in accepting the person she became after a cancer diagnosis. ‘There is a lot of anger; it’s what it did to me, how it changed my life. You know, I went from having an outstanding job and having a good financial and having this outgoing personality, happy person. I mean, I had issues, but we all have our moments and being outgoing, whether you know, going out to dinner with my husband all the time and enjoying …and now to not wanting to do anything, to losing everything. (ID#22)
The experience of late and long-term side effects of cancer or its treatment was the main reason that participants expressed as a constant reminder of cancer in their life. After four years of a cancer diagnosis, one woman described the daunting effect of a cancer diagnosis on her daily life and how she tries to navigate with the constant concern of cancer recurrence. ‘there's always a reminder when you either you know, take a shower, and you're getting dressed, the reminders, the physical reminders there because you're seeing your scar or then if you do any kind of movement or lifting, you feel the pain and then when you have to do another task, and there's a reminder that the possibility of cancer coming back is still there, so the reminders are always there. It's how you're dealing with it on a daily basis if you choose to ignore it, or if you choose to like think about it and which makes it harder’(ID#22). Some other participants (n = 3) who were going through surgeries related to cancer also reported complications such as infection, bulging, nipple shift, and loss of sensation, affecting their self-esteem.
Similarly, some other participants (n = 8) also talked about how their life turned upside down in many ways, including weight gain, physical limitation, impaired body image, and feelings of insecurity. Some women (n = 5) also talked about disruption in their intimate relationship with their partners; some separated or divorced due to changes in their bodies and sexual desire. A participant, who noted healthy eating patterns as well as a more active life before cancer diagnosis, described her mental struggle to find a balance between eating and tolerable physical activity since her surgery. ‘so my diet has changed, my activity changed - I used to be extremely active - but now I can do a little. you know, an outsider looking wouldn't be able to tell anything different, but inside…. And now I’m, you know, reaping the repercussions of how I am forced to eat now. Um I don't sleep well because you're only as good as what you put in your body, and I'm not really putting the best things in um… This is probably the weakest I've been in my life, mentally. I'm nervous if I'm going to sleep every night (ID#5).
The enlightening impacts of a cancer diagnosis were expressed mostly as more appreciation toward life and being alive to spend time with family and friends, greater closeness to God (or their religious belief), or setting meaningful goals to help others. However, these impacts were not exclusive to some participants who expressed some disruptive impacts of cancer on their psychosocial health.
Participants described increased awareness about health and living healthy such as increasing time spent on self-care and spiritual healing since cancer diagnosis. Some participants (n = 3) focused on living fully with all possible joys and moments spent with their loved ones and things they have never done before or finding a way to look on the bright side of a cancer diagnosis. “This weekend, my daughters and I are going to Foxwoods to do a spa treatment. I wouldn't normally do something like that. But yes, I am bound and determined to live my life and get out and do something. I'm going to be getting my passport this year. I want to do some type of travel. Mind you, I'm scared to death of heights. So the airplane scares the heck out of me, but I want to be able to go and do something” (ID#29).
Most participants described positive changes in healthy eating or continued to eat healthy as they had already incorporated into their life before a cancer diagnosis. Almost all participants described themselves as religious, and some (n = 3) reported cancer diagnosis gave them the strength to live a much more meaningful life and the motivations to help them fulfill their duty in life.
The feeling of indifference was described as having a life similar to before a cancer diagnosis or not remembering the cancer diagnosis except during regular hospital visits. One woman stated, “You don't really think about your cancer diagnosis during a day. And so,, I don't even think about it. I feel like I live a normal life. And I'm very happy and thankful that it was discovered so early and I'm still here” (ID#27).
However, some participants who did not have any other significant impact of cancer in their life shared their fear of cancer recurrence, specifically around the regular hospital visit. One woman even mentioned making changes to prepare herself for another cancer.
“I'm not thinking too much about cancer. Because even though for all I know, I'm cancer free right now. I was told that cancer I did have if it reoccurs can go to my brain, my lungs, or my liver.. So it's like so how do I know? I'm not worrying about cancer. Because when I worry about cancer, I immediately go to, okay, I gotta get my affairs in order. And so I moved to this apartment very recently. I separated from my girlfriend. And I'm really working on getting rid of a lot of stuff. Like less is more. Because if I get cancer again, and this time, it's not treatable. I don't want if a niece of mine who will have everything. I don't want her to come here and say, well, I don't know what to do with all this stuff.. I'm thinking about getting my affairs in order. But at the same time, I'm enjoying, like it's a beautiful day” (ID#13).
Theme 2. Facilitators And Barriers To Health And Health Behaviors
This theme includes codes regarding participants’ biological, behavioral, physical/built and sociocultural environment, and healthcare related circumstances creating barriers or facilitators to live as they desire. Factors affecting general health and health behaviors, including physical activity and healthy eating, were differentiated into two nonexclusive categories: facilitators and barriers.
2a. Factors surrounding general health; These subthemes included facilitators and barriers expressed within the general health and wellbeing or a combination of health behaviors affecting their overall quality of life. The late and long-term effects of cancer and its treatment were referred to as a factor affecting overall health and use of healthcare services. The symptoms included menopausal symptoms such as hot flashes, vaginal dryness, lack of libido, insomnia, and surgery related symptoms such as lymphedema, discomfort underarm, numbness on the breast, and general fatigue and sleep problem. Particularly, sleep problem was common, and some did refer to their mental health issues such as anxiety, depression, or the pain when sleeping on that side of breast scars, and hot flashes as sources of their sleep problems.
Facilitators were factors increasing the perceived likelihood of motivation, possibility, or ease of having a desired life that was considered healthy by the participants. Having health insurance was the most significant facilitator for access to health-related sources. Although most participants had MassHealth (Medicaid program in MA), giving them access to most healthcare services, some reported experiencing problems with their insurance coverage. In addition, having a close relationship with healthcare providers and easy access to them was one of the facilitators for participants to experience a better life. One participant stated, “Any problems I have that’s medical related, I always call my primary care doctors, or a nurse, who will always answer me. And I do call too” (ID#3).
Some participants (n = 3) mentioned receiving support and timely assistance from their religious community and faith leaders. However, one woman, who identified as a Jehovah's witness, was reluctant to seek support from her religious community for the fear of being stigmatized.
Barriers were factors that made developing or maintaining a healthy life and accessing healthcare services more difficult or impossible. These barriers included limited health insurance coverage, lack of transportation, difficulty in having appointments, living in a neighborhood with limited resources, or inability to access services, non-Hispanic white dominant neighborhoods in which people of color feel minoritized, fear of being stigmatized or stereotyped to seek help, fear of stigma by healthcare providers and feeling left out from the healthcare system with a limited and no contact with their providers after they completed an intense medical treatment.
“It's the same that most of it revolves around the insurance and the fact that when you are an immigrant you don't understand the system., they have the idea they already have a preconceived being of what you are saying instead of listening to you. So there is always that miscommunication between you and the people you are dealing with. So, which makes it even tougher?” (ID#30).
Neighborhood location and availability of resources such as markets with healthy food options, healthcare centers or pharmacies within walking distance were also significant factors for some participants. Some participants (n = 2) also mentioned the lasting effect of the COVID-19 pandemic on sources such as community centers and gyms that they have used.
“No, and a lot of sources that are out there are far away from me too. Physically, like down here, we don't get nothing, but Taco Bell, McDonalds, there's nothing. All, in all, the doctors that are down there, all the way down Main Street, which I don't take buses, I don't get on transportation. Um, you know, it's just hard. I wish I had someone […] a source of me getting transportation, I get to certain places, and then I will be physically and mentally ready to go out and about and do what I got to do” (ID#19).
Living in a wealthy neighborhood with a non-Hispanic white dominant society was referred to as a barrier to seeking healthcare services. A Hispanic woman who was reluctant to seek help stated, “I know because I live in this area and this neighborhood, they help more people that don't have. So, you know, I look at it, like, well, she lives in this area that's a nicer area; why is she looking for help, when there's less advantage people, there's more less advantaged people than her. So I don't know too many women my age, with my ethnic background, that went through the same thing. You're either all the way, you know, this culture living this life or it's just, hard. It's really hard. I don't like to be viewed that way. So I don't ask, I don't want to be another statistic. There's so much sadness, so much prejudice. I don't want to be a statistic. Regardless of what I'm going through” (ID#22).
Some participants (n = 3) felt excluded from the health care system when they finished an intensive diagnosis and treatment process and not having effective guidance from the oncology care team for sources to be used during post-treatment survivorship for possible problems, including mental health issues.
“You have a really good, medical support team because you're getting, you know, the care that you think you need and then, and then it finishes and then that's it. And then you don't get anything you get left; then you're like another number, another folder put in the filing cabinet. That's it. you don't, you're forgotten. You're truly forgotten about, it's like if you die, you know the beginning, everybody's mourning, crying for you, grieving for you. And then after a year, that's it, you're forgotten, you're a memory if that and that's how it is with cancer, you're just another, ...no importance to what happened. It sucks” (ID#22).
Participants also stated the inability to locate resources, where to seek help, or what type of help they need regarding challenges such as mental health, lack of appetite, and lack of motivation to be physically active. A participant reported a lack of social support from her family to overcome these challenges. “With me that's how I see like I can't talk to my husband about it. Because he's like, you're gonna be okay; it's okay, you're gonna be okay. Can't talk to anybody really” (ID#22). One participant who did not seek help referred to insecurity with her body which made her not seek any help for mental health needs. “I'm not aware of any (sources). But again, unfortunately, what goes along with that Is it's just the insecurity of being seen by other people. You know, it's, unfortunately, it's embarrassing. It feels embarrassing” (ID#25).
Some (n = 3) mentioned receiving educational written materials regarding available services were outdated or lacked someone to walk through these brochures, which they found difficult to understand. One stated, “So I remember, yeah, I remember getting the sheet and being like, oh, this is really helpful. And then I ended up calling a bunch of places and the information, unfortunately, was pretty out of date. So I did end up eventually finding, particularly when I wanted a wig, finding someone that was really great. But it took like, she was like the seventh number on the list and the first six were like, Oh, we don't do that anymore. We don't. We're out of business.. So it was sort of a nice resource. It would have been really nice if it had been up to date.” (ID#20).
Moreover, many participants (n = 7) reported mental health problems (e.g., anxiety, post-traumatic stress disease related to fear of recurrence) as the root cause of many other problems experienced since cancer diagnosis. However, the greatest challenge faced by participants appeared to be finding mental health support in addition to other healthcare needs, such as an endocrinologist, due to a lack of accessible resources, a long waiting list, or locating a professional who they can connect with. Often once they had established a relationship with a mental health professional they felt connected to, these providers changed their practice. Participants, therefore, felt reluctant to start a new provider.
“My primary care – so the cancer center has just said, ‘here’s your primary care.’ Then you saw the nutritionist every two weeks and the therapist every two weeks while you’re currently in therapy. And um I reached back out to her, she gave me a couple of resources within the town. Because when I said I’m having panic attacks and they said ‘oh that’s probably PTSD and kind of left it at that. And she gave me an office that has someone there that is familiar with treating people with cancer. Um the waitlist was more than six months. I found someone on my own that was just a therapist, not necessarily for cancer, and I didn’t really identify with her, and it was really traumatic to kind of tell someone my story and then not connect with them. Um, so I gave up.” (ID#5).
2b. Factors surrounding desired physical activity and exercise; Facilitators were factors increasing the perceived likelihood of motivation, possibility, or ease of having desired active life. Motivational facilitators to maintain a physically active life included access to a neighborhood community gym, support from friends or family members, a physically active life before a cancer diagnosis, or seeing walking as a free physical activity.
“Yes, a matter of fact, they just opened up the community room down at — they got all kinds of new equipment and it’s a gym and they just opened it up because of COVID and everything. So I put my mask on, my gloves. And I go down there, and I work out a little; they got an elliptical machine, a bicycle, you know. Just walk around; they got those little balls and all of that, they got dance classes and stuff.” (ID#3).
Some participants reported that involvement in a community group such as MOCHA, attending the LIVESTRONG program (n = 2), and fitness group provided through their church (n = 1) helped with physical activity motivation and engagement. Some also mentioned their children or family members motivating and encouraging them to stay more active (n = 3).
Barriers were factors making developing or maintaining desired active life and access to sources more difficult or impossible. Most participants (n = 15) reported their desire to improve their physical activity. Participants reported that fear of being stigmatized due to race, weight, or altered body image (mastectomy, weight, and general physical appearance) prevented them from going out to walk or engaging in physical activity.
“you know, weird questions from strangers on the street about anything related to it (having no breast), which, unfortunately, a lot of times if I happen to go out, I’m just sitting there minding my own business, someone will notice me and, you know, they can kind of tell that there’s nothing, you know, they’ll see a scar coming up out of my shirt or something like that. And they want to know, and they ask, and You know what happened to you? Or did you have cancer or, you know, that sort of thing?” (ID#25).
One woman with an ostomy reported that because her insurance covers only a certain amount of ostomy bags and a cheap brand that is not good enough to use safely, she avoids swimming and many outdoor activities to save her ostomy bags and limit out of pocket costs. Another who had to skip filling a prescription for her blood thinner stated, "Um, I mean, short of my health insurance, paying for such things to make them more accessible. But you have to pay for everything else. Right, exactly. So I feel like having my health insurance pay for more and cover more, not just in terms of but, preventative care. It covers the cancer part. But it doesn't cover any of the things that happened as a result of cancer, and a lot of times it is a hardship for many people, including myself so..” (ID#25).
Similarly, some participants stated deteriorating mental and physical health following cancer treatment negatively affected their efforts to be physically active. A few participants felt their introverted personality traits prevented them from going out for a physical activity or seeking resources for their desired weight or activity (n = 3). Few women (n = 2) referred to their hormone treatment, making weight loss harder and discouraging them from exercising. Some (n = 2) described the loss of the body’s strength to carry things and their energy to go out for a walk, and some (n = 4) described cancer related symptoms such as fatigue, dizziness, chronic pain in feet and hands, and impaired body image. One woman with chronic pain and neuropathy stated, “I feel since I feel depressed a lot, It’s hard. It’s like, I need to be called to do something. It’s like I was like, I know that today. I have to go to Livestrong. So I’m gonna do that. If I didn’t have that, my favorite place to be is sitting or lying down. If the, yeah. External motivation helps” (ID#13).
Although some women specifically described (n = 4) pain that affected their exercise habits, some found a way to exercise with the modifications suggested by their healthcare providers. One woman stated, “… if I’m not in pain. I would save for exercise. I exercise a lot and so. The first year after cancer, I would get a little overzealous about exercising and it felt like I was pulling muscles in my chest of scar tissue or something like that and that hurt like hell.” (ID#4).
Although many participants described no financial issue limiting their access or ability to stay physically active, some reported financial and transportation issues to driving places to walk or having an affordable gym in their community (n = 4). Neighborhood that was considered unsafe or unpleasant (n = 5) also prevented some participants from walking in their neighborhood. Some of them also found it challenging to drive to a park for a walk due to a lack of motivation or transportation (n = 3) or after work. Similarly, busy and demanding work life or working remotely after the pandemic prevented some (n = 5) from doing more physical activity than they desired. Some of them stated that prioritizing other essentials in life prevents them from having more tailored and needed services, such as having a personal trainer or a gym membership (n = 3).
2c. Factors surrounding desired eating habits; Facilitators increased the perceived likelihood of motivation, possibility, or ease of having desired eating habits. Many participants (n = 7) mentioned the Supplemental Nutrition Assistance Program (SNAP) providing them access to a variety of fresh fruits and vegetables or having access to fruit and vegetables growing in their own or a neighbor’s garden (n = 3). One participant who was satisfied with the food programs and educational brochures he received on eating healthy stated that. ‘
“Well, the sources are there. When I was at my doctor, I received pamphlets on how to use portion control, like a little plate or a little diagram. As far as receiving that, of course, you have SNAP, you have food banks. So when you go there, you can see something like the fruit that you might want, just like the things like nuts, or a certain type of grain bread. So yeah, there is community resources. Well, you can go and obtain food and get free food throughout the week; plenty of places to get the food.” (ID#21).
Participants (n = 2) with transportation problems were grateful for the SNAP program providing them access to fruit and vegetables delivered to residential buildings; however, one of them was not using SNAP due to a lack of knowledge of what to make with these products and living alone, discouraging her from cooking at home.
“We got – every other Wednesday, they leave fresh fruit and produce in all of the all of the lobbies. Fresh produce, they got nice, big apples, big, sweet potatoes, oh my God yes. I don’t know who they are, but it says the farmer’s market. And they leave it for us,, you go downstairs and help yourself. So all of the lobbies, not just this one, yes. Breads, all of the – homemade bread., it’s all wrapped. You can take one – oh yeah big boxes, they leave it. I’m pretty much satisfied and thankful for crying out loud.” (ID#3).
Some participants (n = 3) specifically referred to their mothers and families as a source of their eating habits; they were raised with homemade fresh food, learned how to cook, and enjoyed fruit and vegetables (F & V) as a child. Access to neighborhood markets or fresh F & V stands motivated some participants to consume healthier amounts of F & V. Although some participants (n = 2) mentioned that they shop at supermarkets due to affordability, some, as opposed to shopping in a grocery store, preferred farmer’s market and food stands in their neighborhood.
Barriers that made the access, development, or maintaining desired healthy eating more difficult or impossible. Most participants (n = 16) reported their desire to improve some aspect of their eating and diet. Regarding eating healthy, most participants reported enough sources to access fruit and vegetables through the SNAP program, through their income, or with support from neighbors. However, even for those with a regular income, the cost of healthy food was referred to by many participants as a barrier to healthy eating. Moreover, some participants described a lack of motivation to have F&V due to those living alone or lacking someone to eat with, described a lack of motivation to use SNAP or to buy F & V due to the expense of wasted food if not timely consumed. Others described challenges (n = 5) to cooking healthy due to preference of another household member (e.g., partners and children) and even (n = 3) ineligibility (n = 2) or insufficient financial support from the SNAP, which prevents them from accessing the food they desire.
“I get food stamps. And for some reason they were only giving me $76 a month. It's monthly. Yeah. So now I get an additional $174 a month, which is still not enough to buy all the food that you really need. I have to make very careful decisions. Like I have to do a list beforehand and try to calculate how much each thing is going to cost me. I can't just go in there and shop, wouldn't get what I need. So that's been a challenge. A big challenge, actually, it’s hard to salvage” (ID#9).
Some participants reported that they do not feel like eating or lack an appetite to maintain healthy eating. Some participants stated that their anxiety and stress (n = 3), prompting emotional eating or not eating at all, or other reasons affecting their appetite. “I don't eat healthy at all. I-I'm just I'm bad, I'm bad. I try to eat healthier and try to eat at work, you know, breakfast. I'm not hungry. You don't feel hungry at all. I live by myself. And I find that if I cook, I waste so much food because I don't eat it. And I don't know how to cook for me.” (ID#11). This woman also mentioned her inability to move around due to her knee disease, making cooking hard for her. A few women (n = 2) also mentioned the use of marijuana to manage sleep problems and chronic pain affecting their eating habits, either making them eat unhealthily or losing their appetite.
Some (n = 5) reported changes in their digestive system and taste after cancer treatment, restrictions or food allergies, or chronic health conditions such as diabetes, kidney stones or lack of appetite, referred to shrunk stomach during chemotherapy affecting healthy and desired eating habits. Some participants (n = 5) mentioned significant influences from their upbringing or culture limiting their healthy cooking ability and eating, what to cook with F&V even provided through the SNAP programs.
“I would like to get more vegetables, but I think it's a cultural thing. So I can we Puerto Ricans, we, we tend not to eat too many vegetables. We didn't grow up eating any vegetables. And this wasn't just my family it's a culture thing, it's just me I think it's just though things have to be taught since when you're very young and after some certain age it’s hard to change” (ID#24).
In addition to cost, transportation and where participants live were mentioned as barriers to access to healthy food (n = 3). Some others (n = 3) reported that making time for healthy shopping requiring to drive was also a barrier even with available transportation. Similarly, not finding culturally desired restaurants in the neighborhood also affected eating. One participant talked about all barriers related to neighborhood, being far from farmer markets, difficulty driving and accommodating the eating preference of other households while cooking.
“If the farm was close by here, and, I know a farm share and get my stuff without driving up a horrible hill where you can fall off on the other side. So, it's just, they have a farmers market here and everything, but it's a I don't know, I just have to just rethink my thoughts with everything and just figure out how to make healthier meals. And that's something that I was talking with my husband and my eldest one he's not picky” (ID#16).
Some mentioned a lack of knowledge of eating and healthy foods. Others (n = 2) highlighted that they know what to avoid, but do not know what to eat that is considered healthy. Some others (n = 3) also were tired of trying to incorporate different diet suggestions but had to give up because it was expensive and different from their cultural diets, such as Caribbean or Jamaican. One other stated that “… not to tell me my diet of what I can't, what I can eat. My doctor only told me because there's stuff that you cannot eat, because you can't digest it, which is corn and stuff like that. But to tell me a diet so the bag won't smell, or I won't use the bathroom at a certain time. No, I never got that source. And that's it, it stops me from eating .. even going out for not to bother anyone around me..” (ID#19).
Theme 3. Utilization Of Available Sources For Health
This theme included limitations and barriers to access and utilization of services to improve health and overall well-being, needs and desired sources to increase the likelihood of access and use of services to improve overall health.
3a. Needs and desired sources for healthy living; The needs of participants are narrated based on biological (e.g., better symptom management), physical/built (e.g., available sources, healthcare, and community facilities), sociocultural environment (e.g., tailored education to cultural and personal preferences, social and family support), and healthcare system-related factors (e.g., better insurance coverage, diverse healthcare providers, tailored services, feeling safe and not discriminated in healthcare settings, continuous care after treatment completed).
Many participants felt left out when they finished medical treatment; therefore, most desired continuous care and follow-up beyond a cancer diagnosis to improve overall health. Transportation and income were significant barriers to healthy eating and physical activity for many cancer survivors wishing to have affordable access to healthy food and more active life. Some (n = 3) wished to have all sources in one package, such as food support and exercise opportunities with others, without thinking about where to go.
“They (healthcare providers)) should give support, you know, so because when you get out from the hospital, you can know where you going. It’s like I got out from hospital and started looking at what I'm gonna do now. You're gonna feel tired, you're not gonna do nothing, you know? Mm mm., I don’t know any education or services in the hospital about your eating physical activity on everything would be helpful” (ID#14).
Participants emphasized the need for more tailored and useful instructions or a list of resources from healthcare providers on weight control, healthy eating and physical activity. A lack of information on resources was reported by many participants, including information on exercise groups, appropriate types of exercise, and specific garments for symptom management such as lymphedema. Although support patients’ groups were also mentioned as a source of learning and sharing to some extent, one participant found it so emotionally draining and needed to ‘make a break’ after having someone with metastatic cancer in the group.
“One is that so a lot of health care providers talked about diet and the importance of not gaining weight for recurrence and for general health and I think one I would have really appreciated, like, what sort of level of weight gain am I worried about here? Do I need to be you know, is five pounds a concern? probably yes it concern but if I'm gaining a little bit of weight because I'm not able to get to the gym or I'm not feeling like taking walks and then later I feel comfortable doing things that will help me return to my previous weight, is that okay?” (ID#20).
Some participants reported the need to have access to restaurants and markets with healthy food options or places to exercise in their neighborhood to enhance their motivation. However, having a gym membership (n = 3) in the neighborhood, or a neighbor or a friend to go for a walk to feel safer in the area (n = 3) helps some participants to stay motivated and accountable to exercise. Some women (n = 3) needed personal motivation to change their behaviors. While most described specific motivations such as having an accountability partner or friend, small groups, and following a standard program tailored to their needs, many participants could not articulate what personal motivation was needed. One participant, who had recently completed treatment, described the treatment process as a loss of time and now she needed time to establish healthy physical activity and eating habits.
“I think that there should be more follow-up. Um to see, even just, even if it’s an automated message just checking in like they can they have an app. They can send anything, even if it was just like ‘hey, here's a reminder to gauge – I'm just checking in on you. You know, a simple message that could be automated. Because it would remind me to check or remind me that someone's paying attention um and that they care about the follow-up” (ID#5).
Some participants (n = 2) specifically sought support groups comprised of persons of similar race/ethnicity as a place where they can feel ‘safe’ without judgments or questioning that would impact their body image. A woman who had a double mastectomy and considered herself obese stated that “I mean; honestly, I think that if there was a space that a person like myself (with a double mastectomy and obese) could go to, where it felt like a safe place, it felt like there were other people that were there that were, you know, in the same” (ID#25).
Participants found it ineffective when their providers provided them with a list of food “do not eat or avoid. Some wanted information to learn what to eat and how to make healthy food with a realistic direction or how to replace what they eat with healthier options. Some emphasized that they want to enjoy their eating; therefore, they want to learn realistic but include tasty cooking options. Some participants wanted to have written educational sources, and some (n = 3) needed someone to walk through their current eating to give them feedback on whether it is healthy or which part they need to change.
Specifically, after the Covid-19 pandemic, some described use of telehealth with their oncologist (n = 3), which has been helping them to access their healthcare provider. Even some mentioned that they are more satisfied and still prefer telehealth because of their introverted personality or problems with transportation.