Fielding, R

Lam, WWT

Hong Kong Medical Journal

HKU Scholars Hub

TitlePhysical and psychosocial adjustment of Chinese women andtheir significant others to the impact of breast cancer andtreatmentsAuthor(s) Fielding, R; Lam, WWTCitation Hong Kong Medical Journal, 2006, v. 12 n. 2 Supp 1, p. 4-7Issued Date 2006URL http://hdl.handle.net/10722/45479Rights Creative Commons: Attribution 3.0 Hong Kong License4      Hong Kong Med J Vol 12 No 2 Supplement 1 April 2006RESEARCH DISSEMINATION REPORT—CANCERHong Kong Med J 2006;12 (Suppl 1):S4-7Physical and psychosocial adjustment ofChinese women and their significantothers to the impact of breast cancerand treatments○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○Department of Community Medicine andUnit for Behavioural Sciences, TheUniversity of Hong KongR FieldingWWT LamHSRF project number: 832016Principal applicant and corresponding author:R FieldingDept of Community Medicine & Unit forBehavioural Sciences5/F William MW Mong BlockFaculty of MedicineThe University of Hong Kong21 Sassoon RoadHong Kong SAR, ChinaTel: (852) 2819 9288Fax: (852) 2855 9528E-mail: fielding@hkusua.hku.hkR Fielding  WWT Lam  IntroductionBreast cancer (BC) is the most common cancer and the second leading causeof cancer death among Hong Kong women, with an estimated 1787 new casesreported annually—equivalent to 17.5% of all newly diagnosed female cancers.1Diagnosis and treatment for BC have significant implications, are highlystressful, and often cause a range of physical and psychosocial sequelae.During diagnosis and treatment, 31-51% of women experience moderately highlevels of depression and anxiety,2 compared with well women.3 In addition,psychological morbidity among women with BC is significantly greater thanthat seen in women with benign breast disease.4Identifying important influences on psychosocial function that affectadaptation to cancer and its treatment is essential if we are to efficiently allocateservices to women at risk for poor adjustment. Most information onbiopsychosocial adjustment in BC is from western countries. Little is knownabout Chinese women’s responses to BC. Culture is an important considerationin any attempt to understand behaviour. Illness meanings affect adjustment.Attitudes, culture, and personal meanings ascribed to a disease influence howan illness is embodied, lived, and coped with, thereby ultimately dictatingadjustment. These cultural and social contexts within which we live convergewith our Life Contexts (developmental stage, personal and family past experiences,knowledge, and beliefs).5 It is unknown whether BC holds the same meaningsfor Chinese women as for western women, or if they experience the samephysical and psychosocial difficulties in response to the impact of BC and itstreatments.No studies have examined the impact of BC and its treatment on Chinesefamily members. Western studies of BC patients and their significant othersreport significantly higher distress than found in the normal population,6 butfamily members perceived significantly less support from friends and healthprofessionals than did patients.7Reductions in length of acute care stay and out-patient treatment protocolshave shifted responsibilities for the physical and emotional care of patients tofamily members. Family availability, willingness, and ability dictate capacity tomeet patient needs and provide for their care. Therefore, a clear understandingof the impact of BC and its treatment from Chinese women’s and their signifi-cant others’ perspectives is essential to provide direction for future interventionsto manage the identified physical and psychosocial difficulties associated withBC.Aims and objectivesTo explore illness meanings held by Hong Kong Chinese women recoveringfrom BC, and those of their significant others, thereby understanding their physicaland psychosocial adjustment to the impact of BC and its treatments.Key Messages1. Changes in the meaning ofbreast cancer and the demandsof adaptation to breast cancercan present significant difficul-ties to women.2. Spouses also experience signifi-cant demands in supporting theirwife but may not have as muchsupport available to them.Hong Kong Med J Vol 12 No 2 Supplement 1 April 2006      5Physical and psychosocial adjustment to breast cancerMethodsThis study was conducted from April 1999 to March 2000.A qualitative study using a phenomenological analyticapproach derived from interviews with female participantsselected on a broad range of disease characteristics, BCtreatments, experiences, age, marital and employmentstatus, and their spouses or partners. Sample size, determinedby theoretical saturation, was 17 women. Only seven of the17 women agreed to their significant others participating.All were interviewed immediately on completion oftreatment (6 to 8 months after diagnosis). Data wereanalysed by parallel independent interpretive reading ofinterview transcripts using a phenomenological approachwith repeated discussion and reiterative reviews of contentto identify repetitive elements and combine these intothematic units.ResultsEleven had stage III and the rest stage I or II disease. Allwomen had surgery: 14 modified radical mastectomy (onewith TRAM-flap breast reconstruction), and threelumpectomy. Eleven women had chemotherapy (CT) only,one radiation therapy (RT) only and five both CT and RT.One woman with recurrent BC in the remaining breast hadundergone her second mastectomy. The women were aged30 to 65 years, two had a family history of BC, 15 weremarried, one was single, and one divorced. All marriedwomen had children (aged from 5 to 39 years). Four womenwere housewives, 10 were currently employed, two wereforced to stop working after the cancer and one took earlyretirement. Of the seven participating husbands (aged 42 to66 years), one was unemployed, and the others weresalesmen, technicians, taxi drivers, businessmen, or civilservants.Women’s illness experience—a number of core themeswere identified from the transcripts:(i) Meaning: BC meaning began evolving and prolif-erating as soon as women discovered their breastabnormality:“a mosquito bite” (Mrs. I)“a scratch” (Mrs. A, Mrs. O)“re qi” (an excess of Yin energy) (Mrs. P) or“too small to signify a problem” (Mrs. D)(ii) Detection of a breast lump:“While checking my breast, I found a lump. It arousedmy suspicion, but I was unsure. So I asked my husbandto take a look and then we decided to seek help fromour general practitioner immediately.” (Mrs. C)(iii) Facing the threat of diagnosis was followed in quicksuccession by (iv) Denial and fear“When I heard the word ‘cancer’, I felt frightened. Alot of people say that cancer is incurable. I was filledwith fear of death.” (Mrs. B) and, rapidly,(v) Searching for meaning to explain why cancer hasoccurred:“I was wondering whether I’m going to die. I thought,‘Oh god! How come I would have this kind of disease?’”(Mrs. C)(vi) Uncertainty: Locked into the diagnostic process the levelof uncertainty rises rapidly until the diagnosis is confirmed.“The surgeon told me that the report should be readyin two weeks. But it wasn’t the case. I thought this isnot a good sign as other patients had receivedtheir reports within two weeks. There must be someproblems with my results. At that time, I was worriedand frightened. I was not sure whether the cancer cellshave spread to the lymph nodes or not.” (Mrs. D)“I went into the room and the doctor was trying toexplain to me. I couldn’t remember what they haddiscussed with me. I only remembered that I had tohave the surgery. My mind was totally blank. I reallydidn’t know what to do. I didn’t want to think aboutthis. I let the doctor decide for me.” (Mrs. G)Once treatment began a further set of thematic meaningsemerged, including (i) the struggle to decide betweencosmesis and the pragmatics of survival, which was mostlydriven by fear:“The surgery (mastectomy) set me free. I feel that Ihave taken out the bomb. This was what I must do andI did it.” (Mrs. C)“I had no choice. I was afraid that keeping the breastwould lead to cancer recurrence.” (Mrs. E)(ii) disturbances to the sense of identity (I don’t know whoI am anymore),“I feel that I’m different from others. I’m different fromthose who are normal. That is, those women whoseappearance or bodies are perfect. For myself, I’mimperfect. I had the surgery and lost one side (of thebreast).” (Mrs. A)(iii) “Doing chemo”, having chemotherapy:“I hardly had any outings. I feel that I had changedinto another person. I used to be quite slim. I didn’tbelong to the group of fat people. Everything changed.I have changed into another person. I feel like I am notin the shape of mankind. I am very fat. I feel that I’mvery ugly. Now when I look at myself from the mirror,I want to throw up.” (Mrs. B)and, when it became apparent that death was not imminentand cure seemed possible, (iv) the question of how patientscould regain a normal life became a key issue.“My friends didn’t know I had cancer. I didn’t want totell them. I don’t want them to pay attention to me. Ifthey don’t know you are sick, they’ll treat you as anormal person. They will ask you out. Otherwise, Iwould be left out as they thought you can’t do anythingsince you are sick.” (Mrs. G)Finally, the meaning of surviving BC must be faced, and isassociated (v) with a process of re-appraising life’s priorities.“I have gone through so many things in the past sixmonths. I used to be very stubborn. I used to worry somuch about what would happen in the future. I wasworried about things such as buying a flat and savingmoney for the future. Then it turns out that no matterFielding and Lam6      Hong Kong Med J Vol 12 No 2 Supplement 1 April 2006how hard you planned for your future, you would neverknow whether you could achieve your goals. Now Ithink that the most important thing to be concernedabout is today’s happiness.” (Mrs. I)Among the spouses, seven men aged 42-66 years saidthat the role of providing support to their wife was the maintheme. The man’s duty was to support his wife:“The husband is the closest person to her. The mostimportant thing is that when the wife is ill, the supportfrom (the) husband cannot be replaced by support fromfriends.” (Mr. E)and this was primarily by the provision of instrumentalsupport around the home:“Back then I wouldn’t care so much about her, such asI would only clean up the table after she went homeand cooked herself dinner. But now I will care muchmore about her. I don’t want her to be too tired.”(Mr. L)By adopting a care-taking role, family was foremost andthe man’s own immediate emotional needs were often putaside, sometimes voluntarily,“When she is ill, I try my best to take care of her. Thechildren have to study, there is not much, for friends,relatives, they can’t help because they have to go towork. We deal with this matter ourselves.” (Mr. F)and sometimes because of prohibitions from spouses:“I don’t have anyone to talk to about my problems.Nobody knows what I have gone through. (Q: Do youtalk to your friends?) No, no, I don’t dare tell them,she told me not to tell anybody.” (Mr. K)Men suppressed their feelings and focused on supportingtheir wife:“She was admitted to a public hospital (so) we felt muchbetter. I started to comfort my wife because my wifewas also very frightened. (laughing) You could not lether know that you were frightened too!” (Mr. E)No one main source of male support was seen, though thehospital teams helped considerably. For some this wasmainly for the wife:“It was my wife who wanted to ask about the treatmentand the procedures of the treatments. I told her to askNurse X or Dr. Y or Nurse Z, because I really don’tunderstand any medical stuff. It would be stupid forme to ask”. (Mr. L)For other men, the limitations of staff support and theimportance of peers were recognised:“The nurses are very friendly. The patients talk witheach other, comfort each other. I think it’s the rightchoice to have surgery here….(But) the gap betweenthe medical staff and the relatives…is so large. Theycannot give much comfort…the medical staff can givethe patients confidence and make them think they haveno big problem because they have professionalknowledge.” (Mr. E)Some men themselves wanted information:“Q. (So you are saying) the important thing thatmakes you satisfied is that they can give you theinformation, so you know your wife’s illnesscondition. You think this is the most important?”Mr. O: “Yes”.Coping with the demands of their wife’s illness challengedthe men. A range of coping patterns was seen, mainlyempathy:“(I get complaints if ) something displeases her. So Ishould be a man and take them without protest. Afterall, she is sick. I wouldn’t be in my sweetest tempereither if I was in her shoes.” (Mr. L)sympathy:“I felt sorry for her when I saw her suffering from theside-effects.” (Mr. F)pragmatism:“Um, worry? I think she is more worried than me…inthis situation she is the one who is going to face thetruth, not me. Frankly, if I am the one who is going tohave to deal with it I would have a different attitude.”(Mr. A)and helplessness:“I told her…with this illness, the husband cannot shareyour (problems) and you are the one who has to dealwith the problems, I often said to her that I don’t knowhow to help her. I can’t help her even if I wanted to. Idon’t know how to help…” (Mr. A)Some men felt that their marital relationship was improved,“Yes, our relationship is even better than before.”(Mr. L)Others felt things were not changed by BC:“More or less the same, we are stable in ourrelationship, nothing special (laughs).” (Mr. E)while some felt there were new relationship problems,“Now she only accept things that please her ears andyou have to yield to what she wants, but I could talkback and argue with her back then when she wasn’tsick. Now I give way to her whenever she is beingdifficult. I just leave it and let her say whatever shewants to say. I mean she was obstinate back then, but Icould still argue with her and opposed what she said.But now I will leave it and let her have the upperhand.” (Mr. L)but these were most prominent among couples that hadpre-existing difficulties:“She doesn’t let me see it (the chest), then forget it!Right? Like I want to care for her, I ask her about thecondition, she said there are no problems, she said thereisn’t anything to see! Then forget it!” (Mr. K)DiscussionIllness meanings are exemplified as evolving, dynamicphenomena changing with situational and relational (life)contexts and the experiences generated by the illness andtreatment process. The findings of this study show theprocess of changes in meanings unfolding from experienc-ing BC treated in a biomedical context. The ever-changinginterruptions imposed by BC over-rode their previousHong Kong Med J Vol 12 No 2 Supplement 1 April 2006      7Physical and psychosocial adjustment to breast cancerassumptions about life and ultimately forced the women tore-organise and re-define their personal meanings asfunctions of the changes comprising the illness trajectory.Coming to terms with BC as a life-threatening illnessmeant facing not only the threat of death, but also thethreat of rejection. Many women attributed their BC tomundane life events rather than uncontrolled factors suchas genetics. This may help the women to minimise futurethreat.Breast cancer disrupts the fabric of daily life andprofoundly impacts a person’s sense of identity. Women inHong Kong seem to value the breast much less as a sexualfeminine or as a functional organ than women in awestern culture. Few women expressed concernedabout their sexuality or the loss of the breast on theirmarital relationship. Hair loss, weight gain, and facialchanges were more important to these women as thesecould not be hidden and were a visible stigmata of illness.Social harmony and keeping the body undamaged isstrongly emphasised in Confucianism and daily life.Therefore health and sickness is not merely an individualbut also a societal issue.This study has highlighted the importance of givingwomen not only tailored information and the opportunityfor choice, but also sufficient time and discussion tosupport treatment decisions. Health providers must listen toand utilise patient stories to better assess and intervene tomitigate the impact of BC on women and their significantothers.ConclusionsChanges in the meaning of BC and the demands ofadaptation to BC present significant difficulties to womenand their spouses who also experience significant demandsin supporting their wife. This study provides importantinformation on the experience of BC for Hong Kong womenand their spouses.AcknowledgementsThe study was supported by the Health Services ResearchFund (#832016).References1. Hong Kong Cancer Registry, 2002. Cancer incidence and mortality inHong Kong 1996/7. Hong Kong: Hospital Authority.2. Fallowfield LJ, Hall A, Maguire GP, Baum M. Psychologicaloutcomes of different treatment policies in women with earlybreast cancer outside a clinical trial. BMJ 1990;301:575-80.3. Pistrang N, Barker C. The partner relationship in psychologicalresponse to breast cancer. Soc Sci Med 1995;40:789-97.4. Goldberg JA, Scott RN, Davidson PM, et al. Psychological morbidityin the first year after breast surgery. Eur J Surg Oncol 1992;18:327-31.5. Lipowski ZJ. Physical illness, the individual and the copingprocesses. Psychiatry Med 1970;1:91-102.6. Northouse LL, Swain MA. Adjustment of patients and husbands tothe initial impact of breast cancer. Nurs Res 1987;36:221-5.7. Douglass LG. Reciprocal support in the context of cancer: perspec-tives of the patient and spouse. Oncol Nurs Forum 1997;24:1529-36.

Physical and psychosocial adjustment of Chinese women and their significant others to the impact of breast cancer and treatments

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Physical and psychosocial adjustment of Chinese women and their significant others to the impact of breast cancer and treatments

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