FEA TURES /Ch R o niq UES BRIEF COMMUNICATION
Contrasting patient and family member
perspectives about cognitive changes following cancer therapy
by Margaret I. Fitch, RN, PhD
INTRODUCTION AND BACKGROUND
U
nderstanding about survivorship experiences is growing, as the number of cancer survivors increases.In Canada, it is projected that the over- all number of new cancer cases in 2030 will be almost 80% higher than in 2005 (Canadian Cancer Society, 2018a).
The overall five-year survival rate has increased from 53% in early 1990s to approximately 60% in recent years (Canadian Cancer Society, 2018b). An estimated 2.2 million Canadians will be living after a cancer diagnosis and treat- ment in 2031 compared to 810,045 in 2009 (Mattison et al., 2018).
Cancer survivors commonly deal with ongoing physical symptoms related to treatment such as pain, fatigue and decreased mobility, as well as emo- tional distress due to fear of recurrence and adjustments to changes in family relationships. While many experience a renewed appreciation of life, many also feel uncertainty about the future and require help in coping when cancer treatment ends (CancerNet).
One of the challenges cancer survi- vors have reported is coping with cog- nitive changes that may occur during treatment and persist after treatment has finished. Between 10% and 40% of cancer survivors report struggling with cognitive changes to a greater or lesser extent (Selamat et al., 2014). For some, the cognitive changes are short-term while others continue to experience
the impact of changes on a long-term basis (Von Ah, 2015). Regardless, when the changes are present, they have an impact on day-to-day living and require constant struggle (Selamat et al., 2014).
Oncology nurses are in an ideal posi- tion to identify when patients and survi- vors are experiencing cognitive changes and to assist them in learning how to cope with their situation. However, to be most helpful, oncology nurses need to fully appreciate what survivors are expe- riencing, the impact of cognitive changes in their lives and the lives of their fam- ily members, and what individuals find useful in coping with the impact. Hence, this exploratory study was conducted to understand and document the experi- ences of cancer patient/survivors and their family members with cognitive change following cancer treatment.
METHODS
The study utilized an exploratory qualitative design. Following ethi- cal approval, in-depth interviews were completed with cancer patients/survi- vors and one family member selected by each patient. Patients had to be 18 years or older; English speaking; have no history of mental illness or medi- cation use (e.g., antidepressants, nar- cotics) in the past six months; started chemotherapy at least six months previ- ously; and reported experiencing mental
‘fogginess’, difficulty recalling informa- tion, or difficulty concentrating since starting chemotherapy. Family mem- bers also had to be 18 years or older and English-speaking.
Interviews were conducted sepa- rately and audio-recorded. They lasted between 30 and 60 minutes. Questions were open-ended, but focused on the experience of having cognitive changes,
the impact of the changes, and strate- gies the individuals used to cope with the impact.
The interviews were transcribed verbatim and subjected to a qualitative descriptive analysis. After reading sev- eral interviews, a coding framework was designed. All interviews were then coded using the framework. The con- tent in each category was reviewed to understand the content shared by the interviewees and summarize the key messages. Perspective from the patient/
survivors were then compared with those of the family members to identify similarities and differences. These per- spectives are highlighted below.
RESULTS
Demographic information
The sample for this work includes 10 patient/survivor and family member pairs (see Table 1). The patient/survivor group included one male and ranged in age from 38 to 72 years. The family member group included four daugh- ters, one friend and five partners rang- ing in age from 16 to 70. A range of cancer types were included.
Perspectives on existence of cognitive changes
All patients reported experienc- ing cognitive changes and nine family members reported they had observed changes (see Table 1). For the most part, the viewpoints were congruent between the patient and the family member, although two daughters had noticed more change than the patients described and one family member indi- cated they had not observed changes.
Five of the pairs were uncertain about whether the changes would persist while two indicated they expected it to be temporary. Two had already noted improvements. Three pairs had
AUTHOR NOTES
Margaret I. Fitch, RN, PhD, Professor (Adjunct), Bloomberg Faculty of Nursing, University of Toronto, 207 Chisholm Ave., Toronto, ON M4C 4V9
FEA TURES /Ch R o niq UES
Table 1: Selected Characteristics of patients/survivors and respective family members Patient
Gender/
Age in years
Patient
Diagnosis Family Member/
Friend Gender/Age in years
Observations between patient and other congruent
Impact of cognitive changes described
Perception of permanence
of cognitive changes Cognitive changes observed within family/others
Discussion with health care professional about cognitive changes Female/65 colon Partner
Male/65 yes Functional temporary yes Discussion with
oncologist Female/72 colon Daughter
Female/37 yes Functional and
emotional uncertain No discussion
beyond daughters
One daughter is a nurse Female/72 breast Daughter
Female/47 Daughter describes more details
Functional temporary Only one
daughter Plan to talk with family doctor if things get worse Female/64 breast Partner
Male/70 yes Functional and
emotional uncertain yes No discussion
Female/52 leukemia Friend
Female/53 yes Functional and
emotional uncertain yes No discussion
Female/52 breast Partner
Male/54 yes Functional and
emotional uncertain yes Discussion with
oncologist and nurses Male/61 multiple
myeloma Partner
Female/48 yes no decline
noted No decline noticed No decline
noted No decline
noted Female/38 breast Partner
Male/39 Partner not aware
of any changes Functional uncertain no No discussion
Female/46 breast Daughter
Female/16 yes Functional Some improvement noted yes No discussion
Female/67 breast Daughter
Female/ Daughter describes more details
Functional and
emotional Some improvement noted yes Spoke with
psychologist
discussed the topic of cognitive change with a healthcare professional.
The descriptions shared by the patients and the family members (see Table 2) revealed both functional and emotional impacts from the cognitive changes. The descriptions of the changes most frequently identified memory loss, difficulty focusing or concentrating and taking in new information, struggles to recall details, and feeling ‘in a fog’ (see Table 3 for illustrative quotes). Family members observed that the cognitive changes resulted in struggles to engage in conversations and interactions with others, repeatedly asking questions, and the need for consistent reminders about plans and events.
Strategies to cope with cognitive changes
Both patients and family members identified strategies they had developed to cope with cognitive changes that had emerged. Some of the strategies were concrete (e.g., write everything down, develop a system of reminders, reduce activities, etc.), while others had more to do with emotional coping (e.g., laugh about it, talk with others, be patient).
Family members found they were often working in partnership (e.g., remem- bering words for the patients, keeping track of information, repeating informa- tion, etc.) (see Table 4). Clearly, aware- ness about the reality of the cognitive changes facilitated the development of
strategies that were effective for a par- ticular couple or family situation. For these pairs, most developed their own approaches, as opposed to having been instructed about what they could do to manage their situation.
IMPLICATIONS FOR PRACTICE
During the interviews, both patients and family members shared sugges- tions about improvements that could be made. The fundamental recommen- dation was to inform patients and fam- ilies ahead of time about the potential to experience cognitive changes (see Table 5). Once an individual receives treatment, healthcare professionals
FEA TURES /Ch R o niq UES
ought to check with the patient about whether cognitive changes are devel- oping. If changes do emerge, then teaching patients/survivors and fam- ily members about the strategies they
can use (see Table 6) is important.
Developing support groups or offer- ing community-based education pro- grams at cancer support agencies can also be helpful. Resources for patients/
families to help them deal with cog- nitive changes are available on the Canadian Cancer Society and American Cancer Society websites.
REFERENCES
Canadian Cancer Society: Canadian Cancer Statistics Advisory Committee (2018a).
Canadian Cancer Statistics. Canadian Cancer Society; 2018. http://www.
cancer.ca/~/media/cancer.ca/CW/
cancer%20information/cancer%20 101/Canadian%20cancer%20statistics/
Canadian-Cancer-Statistics-2018-EN.
pdf?la=en
Canadian Cancer Society (2018b). Cancer statistics at a glance. http://www.cancer.
ca/en/cancer-information/cancer-101/
cancer-statistics-at-a-glance/?region=on Cancer.Net. (2020). Life After Cancer. What
Comes After Finishing Treatment. https://
www.cancer.net/survivorship/life-after- cancer/what- comes-after-f inishing- treatment-expert-qa
Mattison, C., Moat, K. A, Wadell, K., & Lavis, J.N. (2018). Evidence brief: Optimizing patient and family transitions from cancer treatment to primary – and community- care supports in Canada. McMaster Health Forum.
Selamat, M.H., Loh, S.M., Mackenzie, L., &
Vardy, J. (2014). Chemobrain experienced by breast cancer survivors: A meta- ethnography study investigating research and care implications. PLoS ONE 9(9), e108002. https://doi.org/10.1371/journal.
pone.010800
Von Ah, D. (2015). Cognitive changes associated with cancer and cancer treatment: State of the science. Clinical Journal of Oncology Nursing, 19(1), 1-10.
Table 2: Changes experienced by participants and described by family members/friends Patient
Participant Cognitive changes experienced by patient Patient cognitive changes described by family member/friend Female/65 Memory worse; forgetting details and words when talking;
not retaining information; concentration poor; moments of
‘being blank’ (fades away and snaps back)
Struggles to remember details and to concentrate; not listening to me; not taking in information; loses track of what she is saying (sentences and words);
Female/72 Forgets details and what she is doing/why she is in a place;
feels ‘foggy’ and ‘cloudy’; forgetting names; say things and forget I said things
Forgetting information; slower at doing things; needs more rest;
have to repeat information for her Female/72 Memory is worse; misses details/spelling when writing;
forgets what she I doing or why she is in a place Asking same questions over again; forgets names and details like appointments; losing items
Female/64 Memory poor; concentration poor; forgetting words,
details, names, numbers; not taking in new information Thought processes are different; hard to interpret what she is saying sometimes; train of thought seems jumbled; difficulty recalling details/names, etc;
Female/52 Memory poor; difficulty recalling details/names, etc;
feels ‘foggy’; concentration poor; difficult taking in new information/reading; thoughts are slower;
Forgetting details/numbers/appointments; gets angry more quickly; finds it difficult to interact in a group setting versus one-to-one;
Female/52 Memory poor; forgetting details; difficult tracking a conversation, especially in a group; concentration/focusing is difficult; repeating stories to people; not taking in information; cannot speak ‘of top of head’ as easily
Seems ‘in a fog’ sometimes; not as sharp as she used to be; has issues processing information (takes longer, especially with new information); see her searching for an idea or a word or the memory; delay in responding during conversations Male/61 Retaining more information and able to focus or
concentrate more; can stay at work longer (read, computer use, business planning)
Good at remembering
Female/38 Concentration poor; feels ‘foggy’ sometimes; hard to focus
on mundane daily things Not aware of any changes; was not aware it was even a possibility Female/46 Memory poor; forgets words; Concentration poor; feels
‘scattered’ when doing a task; sometimes does not say what she wants to say; has difficulty finding words
Difficulty recalling information and events; has to look up things and double check items; repeats information/stories
Female/67 Memory poor; forgetting names, numbers, and words;
thinking is slower; sometimes not able to say what she wants to say; concentration poor (trouble reading a book)
First language is French – trouble now translating quickly;
difficulty retaining information; confused with bigger words;
frustrated more easily; trouble getting across what she wants to say sometimes; difficulty recalling details; seems ‘foggy’
Table 3: Changes identified by participants – Illustrative quotations Nature of Cognitive
Change Quotes from Patient Quotes from family member/friend
Poor memory;
forgetting names, numbers, details, events, words;
repeating stories
I don’t think other people have noticed. I start doing something and then forget…and I just do something else.
Before, I was good at remembering. I was working and my mind was sharp…now, when I go out the door, I’ve got 5 things to remember and sometimes I have to go back 4 times to get what I thought I had in the car!
Well I’ve noticed…and so had my sister. Mom’s forgetting stuff. So you have to repeat it…and we have not really talked about it in the family.
She has a really good mind and you could name a song from the 40’s, the 60’s.or even the 30’s and she can almost sing the words, the whole thing. Movies are the same. She goes to the movie and she can say the lines from the movie after the second or third time. Now, maybe we watch a movie on TV and I’ll be like, ‘oh yes, we watched this’ and she won’t remember it.
Poor concentration/
focusing I noticed with my reading. I’ll be reading a book and all of a sudden I’ll think ‘I read more and I don’t know what I’ve read’ and I have to go back from there. I have to go back and read the whole chapter again.
I notice that she is having difficulty concentrating and sticking with something…we paint together, but it is hard for her to stay with it.
And I have to repeat things two or three times for her to get it…and it’s hard for her to be with more than one person at a time.
Difficulty taking in and processing information; thinking is slower
I listen, but I am not retaining…I am just not retaining it very well. I have to think about it later and recap on it.
Taking in new information…if I am reading something I don’t understand, I have to go and read it again…and sometimes even then I will not remember it.
She’ll ask the same question over again, within say a half an hour of asking the question. And then ten minutes later she’ll ask you the same question again.
Her thought processes are sort of disoriented…she jumps from one topic to another when she is talking…it would be difficult to follow her train of thought.
Feeling
‘foggy’/’cloudy’/’blank’ It’s annoying because you feel stupid.
Things sort of go away. The everyday things are just sort of stripped away. Well, things actually do come back, sometimes, just sort of snap back. But I wonder when I’ll go again…it’s sort of moment of ‘blank’ or ‘a lost moment’. I just sort of disappear for a moment.
Sometime I find that I’ll be talking to her, and I’ll be halfway through a sentence and realize that she’s gone somewhere, and she’s not listening to what I am saying anymore. And then she comes back and I repeat the whole thing over again.
Difficulty engaging in conversations (following topics and saying what individuals wants to say clearly)
At the moment I can laugh about it because I’ve got great support and he knows when I stop [talking] sometimes, he can finish.
When I went back to work I had trouble following conversations, tracking from A to B…trouble thinking things through Sometimes I can’t think of the word I want to use. Or I say one thing and mean another. Or get a person’ name wrong…and I get flustered.
There will be times when she’s talking and she forgets where she was and she can’t finish a sentence. I’ll finish it for her because I know where she was going. Like the word that is elusive for her, I’ll know it.
She struggles, you know, it takes her a little while, there’s sort of a delay. I can see her looking at an idea, or for a word, it’s a bit slow sometimes.
Her thoughts seem to be – well, she’s constantly trying to think. I am getting used to interpreting what she’s trying to day, if not it would be difficult for someone to fully appreciate what she’s saying. But I sort of fully grasp what she’s saying…
Table 4: Strategies used by individual patients and family members/friends in coping with cognitive changes Patient
Participant Strategies for managing the cognitive changes described by
patient Strategies for managing the patients’ cognitive changes described by
family member/friend Female/65 Stop talking for a moment and think about it
Not worry if I forget something – it will come eventually Alarm on computer as a reminder
Write everything down Try to laugh at it
Depend on husband to help Tell others about it
Remember words for her; finish sentences for her Fill in the blanks in her conversations
Keep track of appointments for her Repeat information for her Use lists
Wait until she is ready to pick up or go on with something else Female/72 If I forget just go on with something else
Write all down
Try to tell others any messages right away Keep a calendar of appointments
Repeat information
Put things like appointments in own day planner Create a common place for messages for everyone Write everything down (especially messages) Female/72 Try not to get upset about it
Be very careful Write things down
Stop and think for a moment Purposely focus on details Use sticky notes around house
Remind her to write things down Do not ignore it
Female/64 Learn about it Tell people
Make allowances for it Write things down on paper
Be straightforward and ask people for help
Interpret what she is saying for her if necessary Try to be patient (not hurry her)
Remind her of things
Help her understand what it happening Try to rationalize the situation; tell the family Female/52 Have a little book and write everything done
Use a calendar on the wall and write everything on it Use a calculator
Let friends know about it and that I need help
Explain things number of times Be patient; take things as they come Put up with it and be her friend Talk about it and why it is happening
Check in with her (make use of cell phone to see where she is and that she is not lost)
Remind her about details/events Accompany her to appointments Female/52 Take someone else with me to appointments
Write everything done
Make notes when have to speak at work
Tell people about it (be open); talk with family and friends Laugh it off
Uses the internet; reads books and newspapers each day
Be more patient and wait in conversations; wait for her to catch up Be less demanding and manage own expectations about how quickly things are to be done
Reduce the volume of activities; decreased the pace of our lives Use humor
Talk openly about it Male/61 Stay positive and active
Maintain a healthy diet Write everything down
Acknowledge it; be aware of it Support the patient
Female/38 Change diet Exercise more More positive thinking More spirituality
--
Female/46 Learn to compensate/adjust Get organized/make lists Use a day planner or scheduler Write everything down (all the details) Post notes in same place
Focus on the details in a situation Learn about it
Be more intention about what you are doing – do not just go on autopilot
Family message board at door going out of house Talk about it
Be patient
Have a book – write it all down
Female/67 Really think and relax (wait for words to come) Write things down
Make use of lists
Watch TV more and read less Try to stay positive
Take notes for her
Go to all her appointments with her
Explain to her what is happening; walk through things with her Make suggestions to keep her calm
Remind her – repeat several times if needed
Correct her is she gets things wrong (in a way that is not hurtful) Get more involved with her and not wait for her to ask for help
Table 5: Recommendations for improvement in care related to cognitive changes—Illustrative quotations Suggestion for Improvements at
Cancer Centre Descriptions from Patients Descriptions from Family Members/
Friends Inform patients and family members
about the possibility of cognitive changes (conversations, classes, literature)
No one told me about chemobrain…when I heard about it, then I started to be relieved. I wouldn’t have gotten so upset it I had known about it ahead of time.
Put this all in a program where they teach you before you have chemo that you may lose your memory
Ask about how we are doing and if there are cognitive changes during treatment
They should tell up front that it may happen and leave it at that. But then later, you are coming here so often, when they ask ‘how are you feeling?’, they should ask ‘and how is your memory?’
Help them recognize that this is a potential problem so they can appreciate that they are not going crazy.
When talking with us talk more slowly
and write everything down You need to talk about it slower so I understand. She loves to take things home and read them there where it is quiet, there’s no distraction. She can do it at her own pace.
If she doesn’t understand she highlights it and asked me later.
Offer support groups or a chemobrain
buddy You could have sort of a group, to talk about it and
maybe share what to do Maybe the centre could offer something like a group, something available that they could talk to others. Sometimes when they are going through it they don’t realize it or they think they are the only ones.
Offer education about what can be done if there are cognitive changes (conversation, classes, literature, counselling)
I would say to have a social worker or psychologist, just someone available to talk with patients, give them insights, that they are not going crazy, you know?
Let them know what is available for them, books, classes, or maybe a group
Table 6: Strategies for coping with cognitive changes as identified by participants—Illustrative quotations
Strategies identified Quotes from patients Quotes from family members/friends Write everything down; make
use of lists; reminders (sticky notes);
When I go out I will often write down things now…I always went by memory, but now I will make a list and tick them off as I go along.
She writes things on the calendar, appointments and such. And we put it in our daybooks, too. And we leave the book for her. That way, well, we all know what is going on…there is a calendar in the kitchen as well. And we all write down messages there.
Learn about it I talked a lot about it [with the nurses] and what other
patients had noticed…I read a lot about it. We did a lot of reading up on it and check the Internet.
Talk about it with others; let others know that you need help sometimes
I tell everyone, I am having some trouble
remembering, and let them know. People in this situation need to be talking with one another about it, they need to be communicating in a supportive and positive way.
Do activities to stimulate your mind: reading, puzzles, crosswords
I try to do a lot more reading. I do crossword puzzles.
You know, if you don’t use it you lose it. I watch news to keep up with things, and read the newspapers.
I noticed that she always doing puzzles now. She’s reading a lot more. And we talk about what’s she’s reading, so it helps her remember more.
Laugh about it; find the
humor We had fun with it. We laugh a lot in this, in my family
group, and try to find the funny parts. We all do sort of joke about it at times.
Stay positive (do not worry) Don’t give the disease any more power than it’s already taken from you. You are in control of what is between your ears.
We try to find the positive energy in what we do.
Be patient with the situation When it happens, I just take a moment, I slow down
and think. If I wait it comes back. I would say we are more patient as a family, we wait for her to catch up.
Take someone else with you
to appointments I try to take someone with me when I go to the
appointments. I always go to her appointments with her.
Maintain a healthy lifestyle I’ve got to get out there and do some exercise I feel
that it does help. I guess eating right and getting some exercise couldn’t hurt.
