Methods

The study was conducted in two medical centers: 1) the Oncology Department at Beit Jala Government Hospital in Bethlehem Governorate, as it is a significant government hospital in the occupied Palestinian territory (OPT) which provides a large part of diagnostic and therapeutic services for oncology patients, and 2) Dunya Women’s Cancer Center in Ramallah Governorate since it is the only non-profit center that provides early diagnostic services for breast cancer and gynaecological services in the occupied Palestinian territory.

The study was ethically approved by the Palestinian Ministry of Health. Contact with participants was mediated by the two medical centers. All participants were approached at the centers, informed of the aims of the study and requested to sign a consent form. Participants were also fully assured of the anonymity and confidentiality of all the information collected for the purpose of the study. The data collection started on 18 January 2015 and ended on 15 April 2015 due to the increased tension in the area and the consequent restrictions to mobility enforced by the Israeli occupation.

The participants recruited for the study were 36 women selected according to the following inclusion criteria: 1) living in the occupied Palestinian territory; 2) been diagnosed with breast cancer between one month-three years prior to the interview; 3) having no previous history of other forms of cancer, since we were interested in how women cope with a “first time” cancer diagnosis and treatment; 4) providing verbal consent and signing an informed consent form.

In the current study, semi-structured interviews were conducted as a way to obtain “thick descriptions” of the women’s experiences and perspectives [37, 38]. Narrative interviews with patients were selected as the main data gathering tool as “Telling stories about illness is [a means] to give a voice to the body” [39, p. 18].

The interview guide had three sections. The first section explored how the illness was discovered, the second section focused on the communication with doctors and the treatment decision-making process and the third section explored the coping resources used by the study participants, specifically the resources of support in facing cancer.

This article focuses on the answers given to questions within the third section (What was most helpful in coping with the disease? Who supported you in this experience? How did the others—family, relatives, friends—react to your illness?).

The interview also covered socio-demographic characteristics (age, place of residence, education, marital status, employment status, how many children, religion) and medical information (date of diagnosis, stage, type of treatment).

The interviews were conducted in a private room (in the hospital or at the center) by one of the authors (M.A.I.), who was an Arab-Palestinian woman, which facilitated communication with the interviewees and their involvement in the research (there was no refusal to participate). She presented herself as a researcher and a doctoral student in social psychology. The participants were informed about the aims of the study and signed a consent form. All interviews were conducted in the Palestinian dialect of Arabic. They were audio recorded, transcribed in Arabic and later translated into English.

The analytical procedures used on the data corpus included: 1) a verbatim transcription of all the interviews and 2) a qualitative content analysis of the interview transcripts. We used an inductive process for the construction of coding categories [40–42]. In a first phase, two researchers read the transcripts of the interviews identifying the categories of content to be used for coding. In a second phase, these categories were compared and subsequently used to carry out the coding of the transcripts. The analyzes were carried out independently by the two researchers. Doubtful cases were discussed with a third researcher until an agreement was reached. The "saturation" level of the data was a matter of discussion and the data collected were considered sufficient for a qualitative exploratory analysis of sources and types of social support. In the article the extracts selected: 1) were representative of the identified categories; 2) showed the variety of ways in which social support is realized within the identified categories.

Participants’ characteristics

The study participants included 36 Arab-Palestinian women diagnosed with breast cancer. Eight of the participants had a history of cancer in the family. The participants were residents of the OPT, and half of them were village residents. The participants’ age ranged between 22–67 years. The educational level of participants ranged from total illiteracy to university level education. The majority of the participants were married (N = 31); of the other participants, one was abandoned by her husband after she was diagnosed with cancer, one was widowed, one was divorced and three were single. Most of the interviewees were housewives (N = 24). The number of children for thirty participants ranged from 1 to 9 children, while only six participants had no children. Almost half the participants (N = 17) said that they did not know at which stage of the disease they were when they were diagnosed with cancer; five reported that they were diagnosed at stage I, nine participants in stage II, three in stage III, and three at stage IV. Regarding treatment, fourteen participants reported that they had completed treatment (i.e. chemotherapy), though they still had to undergo follow up tests and diagnostic images regularly according to post treatment follow up guidelines.

Sources of social support for Arab-Palestinian breast cancer patients

Social relations were described by the interviewees as the main source of support in facing the illness, together with faith and religion [see also 43]. To be more specific, slightly less than half of the study participants (N = 17) asserted that their husbands were most supportive of them during their experience with the disease. Eleven participants said that their family, in the broad sense, stood beside them at all the stages of the disease. However, seven participants indicated that some of their family members were completely unaware of their disease. These participants were all women with children who wanted to keep their condition from their children in order to avoid causing them any pain or distress or anxiety about their illness, or to make sure that their school-age children remain focused on their study. Based on these results, it seems that certain members of the close family (husband, mother, siblings) may be selected to be involved in the care and support of a breast cancer patient, while other family members may not be involved or even informed about the disease (children, old parents) with the intent of protecting them from feelings of anxiety or distress. It is worth mentioning that several study participants reported receiving little or no social support from healthcare providers, social workers or friends.

Drawing both on the qualitative content analysis and on a review of the previous literature [7, 28], we identified three types of social support: emotional, functional and informational support. These results are presented in the following sections.

Emotional support

Emotional support includes the provision of care, trust, reassurance, and companionship. The participants in this study described the powerful emotional support they had received from their husbands and from some other members of their close family at different stages of the illness (e.g. from their mothers or siblings). The support of these family members helped them keep their fears under control and continue taking care of other family members such as children.

During the interviews, some participants recalled the moment they talked with their husband, as reported by S. and G., or informed their parents, as reported by H., and received immediate emotional support (See Extracts 1,2 and 3).

Extract 1. S. (32 years old): “My husband was always trying to be strong and supportive of me, and he never let me feel that I had cancer.”

Extract 2. G. (42 years old): My husband has become closer to me and supported me a lot during my treatment period.”

Extract 3. H. (33 years old): “When I got the diagnosis result, I directly went to my parents’ house even though my specialist doctor had asked me not to tell my family about my condition so that it wouldn’t affect me negatively, I couldn’t avoid telling them. I feel comfortable when I see my parents and I forget that I am ill, but when I am at home, I feel that I will die there and then! I feel much safer when I am with people!”

This extract clearly shows the emotional conflict faced by women regarding hiding the cancer diagnosis from family members or communicating it to them. This conflict is present in the Palestinian society (and here voiced by the doctor) and related to fear of the social stigma associated with the cultural beliefs about cancer [13].

Another example of emotional support provided by a family member is illustrated by R., who was 20 years old when she was diagnosed with cancer and was helped by her brother (See Extract 4).

Extract 4. R. (22 years old): “[My brother] was always with me during all the treatment stages. I used to share all my thoughts and feelings with him; he always made me stronger and supported me all the way through. I always had certain fears regarding the treatment and about the things that I used to hear, but he always advised me not to listen to anyone.”

In the case of T. (42 years old), her mother was very supportive of her emotionally, because she had lived the same experience (See Extract 5).

Extract 5. T. (42 years old): “My mother talks with me a lot to support me; as 12 years ago, she had cancer and survived.”

In a different case, Sa., a 56-year old nurse, initially refused chemotherapy because she was concerned about the side effects, but later changed her mind thanks to the support and insistence of her husband to follow the treatment (See Extract 6).

Extract 6. Sa. (56 years old): “In the beginning, I refused chemotherapy, but with the assistance of my husband, he convinced me.”

Other interviews show the role played by family members in limiting loneliness and isolation for the participants. The majority of the participants reported that they were more inclined to “isolate” themselves from others mainly because they were afraid of the pity that some people may feel towards them and also of the many questions about their illness; this bothered them very much, especially after surgery and the start of chemotherapy. Husbands or friends helped them to leave such isolation, by encouraging them to get out of the house and communicate with people (See Extract 7 & 8).

Extract 7. M. (38 years old): “My husband was very kind with me and tried to make me go out, especially when he noticed that I had started to sit alone and think about my situation.”

Extract 8. G. (56 years old): “I got away from people for two years and became isolated. Only a group of friends supported me through recreation programs and holding awareness workshops on the disease and treatment.”

Some participants reported that interacting with people helped them to have a positive and optimistic view on life (See Extract 9).

Extract 9. Sn. (46 years old): “I felt people’s love for me and everybody was asking about me to make sure I was fine.”

Some participants, as in S.’s case (32 years old), reported that their families had tried to support them by advising them to “ignore the disease” and live as normally as possible, in accordance with a personal belief that this could help them overcome the difficulties that might occur in the course of the disease. Thus these families hid their feelings of anxiety and fear, and avoided talking about negative thoughts, to avoid any outpouring of sympathy and give them “strength”—especially during the treatment period. At the same time, some participants were able to hide their fears, anxieties, and despair from their family and tried to live as normally as possible (See Extract 10).

Extract 10. M. (38 years old): “My family did not show any reaction in front of me; and always told me: “We hope that God will make you recover” and tried to support me all the time. And my children tried to deal with me in a normal way as if I was not sick.”

This section provided evidence of the emotional support provided by husbands, close family members and friends in their attempt to provide the participants with emotional balance, reassurance, and assistance to avoid isolation and loneliness.

Functional support

Functional support includes the practical assistance that the cancer patients receive in terms of financial support, attendance during treatment or help with domestic chores and childcare. The participants in this study reported that they had informed their families about having breast cancer, particularly since they needed someone to be with their children and take care of them.

An example of functional support is provided by A., a 37 year old working woman with a Master’s degree and a mother of five with an advanced stage of the disease, who has been helped by her husband in domestic and family care (See Extract 11).

Extract 11. A. (37 years old):“My family was very supportive of me in fighting this disease especially my husband, who took full responsibility of the house.”

S. (36 years old) decided to inform her sister, who was living in Jordan, about her condition, so that she could come to the OPT to take care of her children while she was receiving treatment (See Extract 12).

Extract 12. S. (36 years old): “I told my sister who is living in Jordan to come here at the time of the surgery to sit with my children.”

In the present study, all the participants were usually accompanied by family members to treatment sessions or to medical visits (See Extract 13).

Extract 13. Sh. (32 years old): “My husband was very cooperative and supportive of me and accompanied me to all tests and treatment sessions…he didn’t leave me alone.”

In the occupied Palestinian territory it is a routine practice for at least one family member to accompany a patient during chemotherapy sessions, particularly because of the side effects which the patient may experience after each session, such as vomiting and fatigue.

Most participants reported receiving financial support from their families. In the majority of cases however, husbands in particular assumed all financial responsibilities. The participants, most of whom were housewives, were economically dependent either on their husband or a close family member.

In this study, one participant (B., 53 years old) described her husband’s exceptionally extreme reaction to her condition. According to B., her husband abandoned her after he found out that she had been diagnosed with breast cancer. However, she was extremely grateful to her brother for supporting her financially and emotionally (See Extract 14).

Extract 14. B. (53 years old): “My husband does not know anything about me, or where I get treatment and who is following-up my case closely until now. Since I found out I had cancer he has been telling me: “I don’t believe you are ill”… this has been his reaction since the beginning… our marriage is over! He left me… he wants me to be just as I was before in the same image he still keeps in his mind. I see him only once a month and there is no communication between us! (…) My brother supported me financially and emotionally.”

Only one case of marriage breakdown due to cancer has been reported in the present study; however, similar cases have been documented in Arab countries [44].

Returning to the question of financial support, Ba., a 48 year-old single woman who lives with her family and is responsible for supporting her family financially, has been facing a difficult financial problem since the beginning of her cancer treatment, when she was regularly absent from her work, and her employer stopped paying her salary (See Extracts 15 & 16).

Extract 15. Ba. (48 years old): “My colleagues at work supported me a lot. During my treatment period, the company where I work stopped my salary because I was absent from work.”

Extract 16. N. (49 years old): “Friends supported me psychologically more than my family.”

N., a single woman who lived alone in her own house, could not tell even her father that she had cancer because she was afraid that the news might affect his health. And her mother was dead. N. stated that she had received emotional and social support from her friends and this had helped her in facing the disease.

Informational support

The study participants received supportive information from several sources: doctors, mainly oncologists and surgeons; family or relatives, especially if there was someone working in the medical field; breast cancer survivors and other cancer patients.

In this context, the participants indicated that they often asked for a second opinion before starting a treatment plan proposed by the doctor. They consulted other doctors to get more information about their health condition, and specific details about the therapeutic steps which had to be taken. These medical consultations were made both locally and abroad (e.g. in other Arab countries mainly Jordan, or in Europe or the US), especially if they had relatives or friends living outside the OPT (See Extract 17).

Extract 17. G. (42 years old): “It is true that the doctor told me everything, but honestly it was not enough for me, I travelled to Jordan and consulted doctors at Al-Hussein Cancer; and what they told me was identical to what my doctor in the West Bank had told me.”

It appears that the main reason for participants to seek outside information was their need to obtain clearer and more detailed information about their health condition and to confirm the treatment recommendation. In some cases the reason was to verify the surgeon’s decision to perform a mastectomy.

However, not all the participants wanted to obtain the information by themselves. Some women asked their husbands to communicate with the doctors on their behalf, preferring not to hear anything related to the disease, as reported by S. (36 years old) who asked the doctor to deliver the diagnosis result to her husband as she did not want to receive it herself. Some of the participants asserted that this gave them “strength” as they received the support and assistance of their families (See Extracts 18, 19, 20).

Extract 18. S. (36 years old): “I didn’t want them to tell me over the phone, nor to ask me to go to the center to get the news. It was better for me that they communicate with my husband.”… “So, my husband is trying to know everything regarding my case before I do, and he follows up on my health condition more than I do.”

Extract 19. D. (67 years old): “He (brother-in-law) simply told me that I had cancer and that my breast had to be removed! No other way would have been better to be informed about my condition since my brother-in-law is a brother to me.”

Extract 20. Sa. (56 years old): “I was terrified by the result; my husband followed-up on everything and it was good that he informed me.”

These data suggest that in the occupied Palestinian territory the family plays a key role in medical consultations and negotiates with the doctor regarding the manner in which the patient is informed, or not, about the diagnosis.

Other sources of information include internet searches to learn more about the disease in general or its treatment and side effects, and advice on meeting the nutritional needs of cancer patients, particularly during the chemotherapy period (See Extracts 21 & 22).

Extract 21. Y. (35 years old): “[I read] medical brochures and I also listened to other people’s experiences. I did not know anything about the disease and I needed now to know about its symptoms and treatment.”

Extract 22. Nd. (49 years old): “I use the internet to read about healthy food for cancer patients as well as the stages of treatment.”

In the following extracts we focus on the difficulties that cancer patients face in getting information from internet websites. Some websites, especially those in the Arabic language, contain inaccurate or outdated information. This makes finding accurate and up-to-date online information about cancer a great challenge for many patients and their families. Some participants reported receiving information from books or brochures, or from other patients. However, obtaining information is not always considered a good thing by participants; it might, in some cases, have negative consequences (see Extract 23).

Extract 23. L. (41 years old): “I used to ask a lot of patients about their cases and my condition deteriorated; after that I decided to not ask anyone.”

L. clearly stated that after asking patients about their experience with the disease for some time, she stopped doing so as she found that it had a negative impact on her and increased her fear and anxiety about the disease symptoms and side effects of treatment and accompanying pain and weakness.

In this section we showed that accessing informational support can be quite challenging in the OPT since the information from websites in Arabic language is not always reliable and extra effort is required to double-check medical advice (e.g. by travelling abroad). The family also plays a key role in obtaining informational support, by mediating communication with doctors. Contact with breast cancer patients and survivors is an additional source of supporting information, with however a possible negative impact in terms of emotional coping [17]. Interviewees such as L. deliberately avoided interactions with other patients as a way to protect themselves from making parallels that might harm their hope and psychological well-being.