key: cord-0941346-jqo7cnju
authors: Kudjawu, Senam; Agyeman‐Yeboah, Joana
title: Experiences of women with breast cancer undergoing chemotherapy: A study at Ho Teaching Hospital, Ghana
date: 2021-08-17
journal: Nurs Open
DOI: 10.1002/nop2.1029
sha: 0dc3041aa3bb407760e63f1b57b217529f4bcdcf
doc_id: 941346
cord_uid: jqo7cnju

AIM: The study explored the experiences of women with breast cancer undergoing chemotherapy at Ho Teaching Hospital. DESIGN: A qualitative design which was exploratory and descriptive in nature was employed. METHODS: Purposive sampling was used to recruit participants. Data were collected using a semi‐structured interview guide. Saturation of data was reached after the eighth participant was interviewed. The interviews were audio‐recorded and lasted between 30–70 min, and the data were analysed concurrently with data collection using content analysis. Three major themes emerged. RESULTS: Participants experienced hair loss, changes in skin and nail pigmentation and social isolation. The study further revealed that inadequate access to information from healthcare providers and lack of resources coupled with financial constraints were among the major challenges participants faced. However, varied supports from significant others were of much help which enabled participants to go through their chemotherapy successfully.

Breast cancer is the most often diagnosed cancer and the primary cause of cancer deaths among females worldwide. Breast cancer has become a major public health concern globally and especially in lowand middle-income countries (LMICs) (Coughlin et al., 2017) . Breast cancer is also the second most frequently diagnosed cancer globally and the leading cause of cancer deaths associated with women in over 100 countries (Bray et al., 2018; World Health Organization, 2019) . Researchers have documented an increase in the incidence of breast cancer cases globally which is projected to double by 2030 particularly in LMICs. Breast cancer diagnosis coupled with its treatment experiences has a direct impact on women in all spheres of their lives, be it physical, psychological and social, leading to the deterioration of psychosocial adaptation which affects their family life and social relationships negatively (Dempster et al., 2015) . The distress faced with breast cancer diagnosis and treatment is numerous.

Patients diagnosed with breast cancer have psychological or emotional concerns about altered body image, self-esteem, issues with fertility and sexuality. Diagnosis is also associated with shock, unknown outcomes of disease, death, creating a sense of sadness, anxiety and depression (Chua et al., 2015; Ruggeri et al., 2019) .

Various treatment modalities are used in the management of breast cancer. These include surgery, chemotherapy, radiotherapy, hormonal, targeted or biological therapies (American Cancer Society, 2019) . Chemotherapy is one of the treatment modalities for treating breast cancer with or without other modalities and is recommended as soon as possible after the diagnosis has been made. Chemotherapy can be given as an adjuvant or neo-adjuvant treatment to either cure or palliate the disease (American Cancer Society, 2019; World Health Organization, 2015) . Timely initiation of chemotherapy reduces the risk of spread and increases the chances for survival. But sometimes, treatment is delayed for some reasons including severe unpleasant side effects experiences which affect the general health status of the patient, cost and schedule. Studies have revealed side effects from chemotherapy seriously affect patients' physical and psychosocial well-being such as sexual life, inability to work or carry out normal daily activities, thereby having a strong negative impact on their quality of life (Dempster et al., 2015; Lorusso et al., 2016) .

Some chemotherapy drugs can damage cells in the gastrointestinal tract, bladder, lungs, kidney, among others. Some of the common physical and physiological side effects include insomnia, fatigue, anaemia, skin and nail changes, nausea or vomiting (Ruggeri et al., 2019; Chua et al., 2015) . Psychological or emotional reactions to treatment include altered body image, self-esteem, issues with fertility and sexuality, sadness, anxiety or depression. Also, the financial burden of care or cost and lack of support among others are worrying situations women find themselves in (Dempster et al., 2015) .

Poor access to information on breast cancer and its related management is a major impediment to cancer care in Sub-Saharan Africa (Akuoko et al., 2017; Cazap et al., 2016) . Additional obstacles to cancer care include the cost of cancer management, poor medical infrastructure, and access to care, and scarcity of medical personnel in the field of oncology (Cazap et al., 2016) . All these can eventually delay or halt treatment, making the disease progress to an advanced stage and ultimately affecting the survival rate.

The available literature, however, suggested preponderance of studies on experiences of patients undergoing chemotherapy in high-income countries with very few such studies in sub-Saharan Africa. In Ghana, for instance, the studies tilt towards experiences with a breast cancer diagnosis, psychosocial reactions to diagnosis and experiences with general treatment options for breast cancer. In light of the paucity of information on previous studies in Ghana and specifically in the Volta region, there is the need to focus on improved chemotherapy outcome for breast cancer patients in the country. The question that this research sort to answer was as follows: "what are the physiological, psychological and social experiences of women with breast cancer undergoing chemotherapy?". This qualitative study therefore explored experiences of women with breast cancer undergoing chemotherapy at Ho Teaching Hospital.

The study employed a qualitative design that was exploratory and descriptive in nature. This choice was appropriate as it enabled the researcher to intentionally select the population that had the characteristics required for the study.

Participants who met the inclusion criteria were women diagnosed with breast cancer either have had surgery or have had radiotherapy and are receiving or had completed chemotherapy at least about 1-12 months' duration (3 out of the 8 participants have had both surgery and radiotherapy), more than 18 years and are able to speak either English or Ewe. Six participants at the time of interview had completed six cycles of chemotherapy, and the remaining two had completed their second and fifth cycles, respectively, which were barely 1-12 months apart. Participants who fell within the inclusion criteria of the study were approached with the assistance of a gatekeeper who in this case was the head of the surgical department. She was contacted, and her permission was sought to assist the first author to get in touch with prospective participants after the purpose of the study was explained to her at the setting. Those who were interested in the study were informed about the purpose of the study, and they were assured of their voluntary participation and the right to withdraw at any stage of the study without any effect or consequences on them.

Participants were assured of confidentiality and anonymity of their responses. The date, time and venue for the interviews were decided per the participant's preference. A consent form detailing the objectives of the study and other relevant information was read and explained to the study participants. Written informed consent was obtained voluntarily from participants by either signing or thumb printing a consent form. The interviews were done according to the participant's language preference (either English or Ewe).

A semi-structured interview guide containing twelve openended question with probes based on the study aim was used to collect the data from the participants. The interview method permitted the researcher to divert from the interview guide to seek further clarification by the use of probes and facilitating queries to extract in-depth information. This interview guide was pilot tested using two women who fell within the inclusion criteria at the Ho Teaching Hospital. This helped in finding vague and confusing questions that were revised in order for the data collecting tool to measure what it intends to measure. Interviews were conducted by the first author and audio-recorded with permission from participants, and saturation of data was attained after the eighth participant was interviewed as the eighth interview yielded no new information. The interviews lasted approximately 30-70 min. A total of eight participants with ages ranging from 42-61 years participated in the study. Six of the participants were in their forties while the remaining two were in their early fifties and sixties, respectively.

The audio-recorded interviews were transcribed verbatim after each interview converting all voice data into written words to facilitate analysis. Five interviews, which were conducted in the local dialect (Ewe), were first transcribed in Ewe and then translated to English by the first author, and the remaining three were conducted in English. Translated versions of the interviews were discussed with the help of a professional teacher who is fluent in both the Ewe and English languages and teaches English, to ensure accuracy of the transcribed data translation while maintaining confidentiality and anonymity of participants.

Data collection was done concurrently with data analysis.

Thus, each interview was analysed by both authors independently before the next data were collected and were analysed using content analysis. In content analysis, the researcher seeks the meaning of specific passages within the context of all of the data (Mayan, 2009 ). The transcribed data were read severally, coded, categorized and sorted into major and subthemes. In cases where a participant responded to a question in a way that fell beyond the scope of the developed coding system, a new code was added.

Non-verbal expressions from participants were also analysed from field notes (which served as an audit trail for an objective assessment and confirmation of documented information) taken on the context and behaviours of participants during data collection, with the exception of two interviews that were conducted via the mobile phone due to restricted movement and social distance measure due to the COVID-19 pandemic. However, the network quality during the interview was clear throughout the interview session though on few occasions one participant's interview session, the voice becomes faint and that aspect of the interview has to be repeated. Also, two other interviews were conducted in the various homes of the participants while the remaining four were conducted in the hospital's premises. Saturation of data was attained after the 8th participants. There was no new information from the data analysis after the 6th participant but the data collection continued until the 8th participant.

Research Ethics Committee approval was obtained from the Ethical and Protocol Research Review Committee Board of the University of Health and Allied Sciences (UHAS). Written informed consent was obtained voluntarily from participants who met the inclusion criteria by either signing or thumb printing a consent form.

Three major themes emerged from the data analysis. These were as follows: physiological experiences with undergoing chemotherapy, psychosocial experiences with chemotherapy and experiences with social support systems. Two of the major themes had their respective subthemes. These are described below:

This theme explored participants' physiological experiences with chemotherapy. Most participants experienced the most common physiological side effects due to chemotherapy. Some of these side effects experienced were hair loss, changes in skin and nail pigmentation, pain/numbness of the hands and feet as well as feeling of weakness/fatigue. Participants also narrated experiencing gastrointestinal problems after receiving chemotherapy such as nausea and vomiting. Some stated these ordeals made them felt weak and they become scared when the time for the next cycle was approaching.

These were how some of the participants narrated their experiences:

The first chemo I vomited a lot, I thought I was dying.

The vomiting was too much for me (laughs), it made me very weak… It was something that I felt, so whenever I'm about to do the chemo I fear (laughs).

(P4, 46 years) Mmm they were in various stages oooh. The nausea is one, weakness two, nail colour changes. Then stomach upset serious one, diarrhoea followed by heavy flatulence and then sometimes spell of dizziness immediately after receiving the chemo. … (P7, 61 years) Participants narrated feeling of weakness/fatigue was the most worrisome side effects ever experienced and this prevented them from performing their normal activities/roles as they used to. Some participants narrated their experiences as follows:

The most worrisome side effect was the body weak- 

This theme explored participants' psychological experiences with undergoing chemotherapy. Two subthemes emerged as follows: (a) participants had varied experiences during preparation for chemotherapy commencement and (b) participants experienced social isolation.

3.2.1 | Subtheme 1: Participants' had varied experiences during preparation for chemotherapy commencement This subtheme explored how participants were prepared towards chemotherapy. Participants received some basic information from the healthcare providers during the preparation phase.

According to the participants, before the commencement of chemotherapy, they were educated on the mechanism of action of chemotherapy and the possible side effects of the drugs on the body. They also acquired information on duration of treatment, recommended dietary requirement to stay healthy, the importance of avoidance of crowd and the expected financial obligations required. This acquired information was shared by some participants as follows:

The doctor made me aware that the chemotherapy will kill any cancer cells if there is still some that might remain in my body …. He made me aware that there will be distortion in my whole system from the way I used to previously. It will make my whole body becomes darker especially my hands, feet and face, wherever hair is found at on my body I will lose all. …. I won't also be able to eat, vomiting, ….

(P5, 48 years) … The doctor made me aware that, it will make me weak, I will lose my hair, changes in my skin colour and sometimes can make my menses cease. And also, I should make sure I'm eating well so that I can go through the side effects easily.

(P3, 46 years) Though participants indicated they were given a lot of information on the unpleasant possible side effects that were likely to be experienced, they were not informed on how to manage some of these side effects when it arises. These were some narratives from participants:

Oh, I wasn't given any information on how to manage any side effect should it occur….

(P3, 46 years) I wasn't given any information on how to manage myself at home… And for the hair loss and skin/nail changes, I was only told not to worry that after treatment is over everything will resolve. Findings indicated participants had minimal information on the management of common side effects that results from chemotherapy. Participants were also given information on the number of times and how often they will be receiving the treatment.

Educating patients on foods and things to do while undergoing treatment is paramount to a successful treatment. Some participants indicated they were not educated on things to eat or to avoid and some upon personal enquiry before they were told to limit consumption of certain foods. Some of the participants shared their experiences as follows:

I wasn't told anything like to eat this or don't eat that.

I rather asked him (doctor) what are the things that we needed to eat and not to eat and the response was I can eat anything that I prefer but I should limit intake of sugar.

(P6, 51 years)

In terms of food, I was never given any information on it. But I just decided to be eating some particular foods that's all. I was never informed that this food I can eat it and that I shouldn't eat it, I was never told.

(P3, 46 years) Information acquisition forms an integral component during cancer treatment. Having the required information helps prepares the patients psychologically to cope better with adverse effects during the therapy.

Chemotherapy in its nature reduces the immunity of patients undergoing this type of treatment. Participants were made aware that during the treatment the drugs will lower their immunity by killing those cells that help the body to fight against any infection. So, there was a need to avoid crowded places to prevent getting an infection during the treatment. These were shared by participants as follows:

The doctor made me aware that, now that I have Participants narrated been given information on the cost of the treatment and the need to prepare towards raising funds in readiness for each treatment cycle. Most participants were aware of the cost for the treatment, so they tried to look for funds in readiness for the subsequent doses. Others too had financial assistance from support systems enabling them to prepare towards treatment at each point in time. These were some narratives:

…at times I will just be thinking eeei could I, especially when it came to the chemo when I got to know the cost involvement of it. I said will I be able to go through it, will I not die because if I cannot afford it, it means I won't have it….

(P7, 61 years)

The cost I was told that every 21 days I will take another dose so I had to prepare to buy the medicine myself so that I can continue the treatment. Clients who are unable to meet these financial obligations are more likely to default treatment.

Most of the participants avoided going out into the midst of people to prevent questioning on the changes happening on their body. The physical changes on their body prevented them from attention social gathering. They therefore felt isolated from the society due to the chemotherapy side effects that they were experiencing. They had this to say:

When my hands and nails started becoming darker, I don't go out to the midst of people for them to be asking plenty of questions.

(P1, 44 years) … I felt when I go out people will be looking at me and be questioning me… so it makes me not to feel comfortable….

Chemotherapy treatment mostly has significant impact on appearance which is often experienced by almost every patient. Therefore, patients undergoing chemotherapy treatment need to know much about these negative changes and how to cope with them and psychosocial counselling in order to live a normal life within the society.

Participants shared various experiences on the morale and social support they had received from healthcare providers. They also stated their experiences concerning staff attitude and their information needs during and after treatment. There was other social support from significant others which assisted participants in their treatment trajectory. Financial challenge was what most participants' complaint about.

Participants shared experiences they had on supports received from staff, their relationship and the care rendered to them. On the one hand, participants were satisfied and impressed with the care they received from the healthcare providers. On the other hand, some of the participants felt they were not properly prepared and hence lacked knowledge on the process of the therapy and what they were expected to do to minimize the effect. These were some of the experiences shared by participants: …the staff were never harsh towards me. They have done their best. The support that they could offer, they do their best and give it out. 

from healthcare providers on their condition and treatment.

Participants received varied forms of supports from different sources which enabled them to undergoing chemotherapy successfully. Support from spouse and children was very common among most of the participants in the study. Responses given by participants indicated a form of relieve, thus the provision of psychological, financial and spiritual supports from spouse and children during their diagnosis and treatment. Participants also received supports from their extended family members. These supports were received in some cases because they disclosed their diagnosis to them which gained sympathy and concern from the family members. Responses from participants on support from family members brought a form of belongingness to them. Being connected with friends/colleagues was an essential component of going through breast cancer diagnosis and treatment. Friends provided strong psychological and financial supports to most of the participants in the study. Some of the participants received financial support from friends, and others received psychological support during their treatment phases.

The participants in this study also indicated varied forms of supports they received from their workplaces and colleagues at the workplace. Some received financial support and were allowed to stay home till completion of treatment. Most participants received some forms of support from members of their church.

They did not only receive spiritual support but also financial support from their churches. The following are narration from participants:

My church…they knew I was sick and they visited and supported me financially during that time. My concern is if they can seek the assistance of some NGOs for us so that those people who will be unable to afford, they can help so that the patient pays 50% of the total cost….

The financial burden associated with chemotherapy has been a cause of worry to most patients. Due to this, some patients start treatment and break along the way as they cannot afford any longer while few others complete their treatment with the help, they receive from love ones. Most patients too are breadwinners for their family making life difficult for them during that period.

Responses from participants indicated various concerns on lack of awareness creation. They believed they needed more education as they seem to know less about the condition especially in the Volta region. Participants shared these concerns: I think education is minimal concerning this condition, I'm telling you…we don't seem to know much. Men too should know about it so that they can help… we need more education.

My only concern is that they should have time and organize programmes for us. They should have some club for us so that they can be educating us more and doing some check-ups for us….

(P2, 46 years) Periodic education and outreach services will assist in the dissemination of information to the populace of the region. Also, the need to have adequately trained healthcare personnel to take up this mantle will be of a great help to the people. Though, there are programmes for awareness creation in this part of the region, a lot of the populace are still in the dark; therefore, there is a need to reach people in the hinterland as well.

During the preparatory stage for chemotherapy, healthcare providers made participants aware of possible side effects that could affect the physical, physiological and psychosocial well-being of participants. Participants in this current study narrated that they did experience hair loss, skin/nail colour changes, loss of appetite, nausea, vomiting and bodily weakness, among others. Bodily weakness was the most worrisome side effects participants narrated as this prevented them from performing their normal daily routines during those periods. These findings support that of similar qualitative studies undertaken by Iddrisu et al. (2020) , Ruggeri et al. (2019) which also highlighted the unpleasant physical and physiological side effects that patients undergoing chemotherapy often experience which include insomnia, fatigue, anaemia, skin and nail changes (dry skin and colour pigmentation), nausea or vomiting which affected their normal life in many ways. A related study by Wils et al. (2019) also revealed that patients undergoing chemotherapy experience an altered body image, felt different, rejected and were socially withdrawn, particularly due to loss of hair.

Finding from this present study revealed participants stated feeling weak was the most worrisome side effects ever experienced as it prevented them from performing their normal activities or roles.

This finding is consistent with a qualitative study by Suwankhong and Liamputtong (2018) which revealed that women undergoing chemotherapy often felt disabled due to the side effects they experienced and are unable to perform their normal roles as they used to.

A related qualitative study finding by Iddrisu et al. (2020) on psychological and physical effects of breast cancer diagnosis and treatment on young Ghanaian women revealed that effects of chemotherapy on the women made them unable to perform normal daily activities such as eating or drinking and performing household chores.

Chemotherapy comes with enormous side effects which affect the well-being of patients be it physical, psychological and social, among others. To minimize the side effects and improve the psychological well-being of patients, participants in this current study were taken through series of preparation during the initial phase such as dietary requirements which included eating of fruits and vegetables and the importance of avoidance of crowd to prevent opportunistic infections to help them cope and adjust with the effects of treatment. This finding agreed with findings by Suwankhong and Liamputtong (2018): Lai et al. (2017) and Wampaalu et al. (2016) which indicated breast cancer patients should necessarily employ medically recommended coping and self-adjustment strategies including diet adjustments such as eating lots of fruits and vegetables, exercise and taking enough rest, and engaging in indoor activities to minimize the side effects of chemotherapy. The study further revealed that others isolated themselves as much as possible since they felt their immune system was compromised and they could contract opportunistic infections. Having relevant information from healthcare providers brought a sense of calmness and belief in the effectiveness of chemotherapy with the hope of a cure.

Further analysis from this present study provided ample proof that participants on chemotherapy felt the information provided throughout the disease and treatment processes was not comprehensive enough. Most of them indicated they had no idea about the first aid management for some common side effects leading to some resorting to other sources for information. This finding presents a vivid picture of the abundant evidence in the studies with that of Hellerstedt-Börjesson et al. (2016) which highlighted that insufficient information given at various care institutions was a source of worry to many patients. Sadly, this finding seems to be in the majority in this present study as participants had limited knowledge. This affirms study findings by Iddrisu et al. (2019) which revealed that participants were inadequately prepared and educated on treatment-related side effects before the commencement of treatment which affected their quality of life. Suwankhong and Liamputtong (2018) further asserted that women on chemotherapy receive very little professional support from healthcare providers about chemotherapy-related side effects; hence, they had to rely on their judgement and or use local resources to deal with the side effects of the treatment to improve their health and well-being.

Participants in this current study were, however, eager to search for information on the therapy in order to improve their situation.

The study also revealed supports from a network of support systems provided by close and extended families. Colleagues and friends also provide an atmosphere of wellness and a sense of belongingness to people in distress. This, participants in this study described as tremendous as it helped to forge a sense of belongingness and were also able to cope with treatment. Chemotherapy side effects are inevitable, and patients should therefore be provided with the needed support, needed information about chemotherapy and self-care strategies that would help patients overcome the challenges that come with these side effects. The mixed experiences on information need from participants' narrations could be attributed to non-availability of pre-chemotherapy education guideline or standard operating protocols for the healthcare providers in the facility. Findings in this present study are an indication that healthcare providers have a huge responsibility to offer concise and relevant information that would help facilitate the care processes. Health literacy is therefore paramount to cancer patients in the management of the possible unpleasant side effects that they might experience.

These study findings revealed the experiences with support participants received from healthcare providers. These participants narrated were in morale and psychological forms. The findings of this study highlight the experiences participants shared concerning the attitude of staff, their relationship and the care rendered to them. Most (six out of eight) participants described the attitude of the staff as positive and satisfactory to the rendered care. This finding is congruent with the study by Law et al. (2018) which revealed that patients and caregivers were satisfied with the care they received from healthcare providers. On the contrary, few (two out of eight) participants in this current study described how dissatisfied they were regarding some negative staff attitudes exhibited towards them in line of their duty. This finding can be related to the study finding by Hajian et al. (2017) which indicated that patients reported displeasure with their interaction with healthcare providers.

Participants from this study felt relief and delighted with the supports received from these support networks; it certainly gave them hope, enabled them to undergo treatment successfully and also kept them alive. They received varied social supports from different support systems. Supports were in a form of financial and emotional supports as well as the provision of information on the condition and its management. This finding supports similar views expressed by Further finding in this present study revealed that there is a lack of awareness creation and support from various support groups and organizations. Participants felt there are limited resources required to assist in the management of their condition. Study's findings that this current finding supported revealed lack of resources and access to affordable treatment at healthcare facilities for breast cancer services, as a major challenge that stalks healthcare delivery (World Health Organization, 2015).

There are a few limitations to the present study. Findings from the study cannot be generalized due to its qualitative nature with small sample size of 8. The study was conducted at only one facility in the Volta Region, and hence, findings may be peculiar to this facility. Due to the COVID-19 pandemic, it was also difficult to get access to participants and this delayed the data collection process. The COVID-19 pandemic restrictions could not permit face-to-face interview of all the participants, and this might have affected their response in the interview although measures were put in place to limit this to the barest minimum.

Based on the study findings, the following recommendations were made.

• Regular in-service training and Continuous Professional Development courses should be organized for healthcare providers especially nurses by the management of health institutions to better prepare healthcare providers to provide appropriate and adequate service required in cancer management especially on chemotherapy and also to promote increase awareness about breast and other cancers among the public.

• Trained healthcare personnel in the field of oncology in partnership with breast cancer survivors should establish a breast cancer survivors' and support groups at the local levels who will support and encourage new breast cancer patients undergoing chemotherapy through sharing of experiences for a better outcome.

• The study recommends that healthcare providers support all cancer patients and their families with the needed information on the condition and psychological support throughout their cancer trajectory.

The need for social support is significant to help cancer patients go through the cancer trajectory successfully. Also, the need for the government to step in to cover cancer treatment under the National Health Insurance Scheme will be a laudable idea that will help these patients immensely.

The author would like to acknowledge all the participants who availed themselves and share their experiences in this study.

No conflict of interest declared by the authors.

SK: Conceptualization of the study, data collection and data analysis. JAY: Assisting with the conceptualization and data analysis and supervision in the writing up of the study. SK: Manuscript drafting. JAY:

Assisting in finalizing the manuscript for publication.

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The data that support the findings of this study are available from the corresponding author upon reasonable request.

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