Sadness over being unable to provide tangible support: I cannot do anything for my children

In general, patients expressed sadness over no longer being able to provide tangible support and perceived this as a loss of an important part of their parenting role. As one patient described when asked about the overall experience of having a life-limiting illness, R: What is the most difficult thing for you? P: I cannot do anything for my children…[crying]. (Patient 1, Male, Stage 1 interview)

Often, the experience of multiple losses caused by life-limiting illness was expressed in the context of family life, which for these South Asian patients it was important to maintain actively. Patients struggled to uphold their responsibilities within the immediate and extended family. They particularly grieved at being unable to provide social support for their children.

The most important expressed need for tangible support was transportation. Patients and their carers frequently discussed the importance of availability of transportation, particularly in relation to picking up and dropping off children from school, taking outings and attending doctor's appointments, Sometimes [I] had to make [my] son take a day off school when I needed to go and see him [patient] in the hospital. Even now, when I take him [patient] to see the doctor, my son will need a half day off school. (Carer, Patient 2, Female, Stage 1 interview)

Patients described children's desire to go on outings with their parents. However, ill parents and some carers, particularly female carers, were often unable to drive. Patients reported a longing to be able to take outings with their children, which they perceived to be important elements of a happy, carefree childhood, My eldest son did say to me once those other children's mums take them out and I would like to do that [crying]. Hence I started to drive to the shopping centre and sit in the car. I couldn't go in because I was feeling so tired… (Patient 25, Female, Stage 1 interview)

The need for transportation was most acute when participants had arrived recently in Scotland and did not have resources such as cars, driving licenses or a support network to help in picking up and dropping off children from school or engaging in enjoyable activities.

Desire to provide emotional support: by God's grace I still have that power

Patients desired to provide emotional support for their children, very often because they could only provide limited tangible support. In one parent's words, See if I had, I don't know how to put it so it sounds politically right, if I had suffered any mental problems, then it would be different. Because I would not be able to keep my family together, whereas, through God's grace, I have still got the power. I have still got that ability to step in and help my children when they have a problem. Or if we have a problem, to sit and talk like an ordinary family. Only thing is that I can't do anything for them. (Patient 4, Female, Stage 3 interview)

The same patient added that at one point in time her daughter was offered an opportunity to join a support group for young persons with parents who suffered from life-limiting illness. The daughter refused this offer. The patient explained that she respected her daughter's decisions, stating she wanted her daughter to experience as much normalcy as possible, Yes, at one point, they did offer support for my children, joining a group or something like that. And my daughter said no, ‘I don't want it’. And I said, well, I don't want them to feel any different, I just want them to grow up. Have, as much as possible, a normal up-bringing. The choice was given to her and she refused, so that's fine. (Patient 4, Female, Stage 1 interview)

Some parents were happy to receive tangible and emotional support services, though there were cultural differences which sometimes prevented full access to these services. For example, in regard to emotional support services for patient 5, the healthcare provider reported that children, despite parents’ interest, had never attended the offered group therapy session due to a scheduling conflict. This conflict was due to the children needing to attend the mosque at the same time as the group therapy session. Children's participation in religious activities was perceived by many patients as important both for their children's upbringing and for their present and future emotional well-being. Culture—and more specifically religious—aspects shaped experiences and priorities among patients as exemplified by the emphasis bestowed on religious learning for their children. However, the patient and carer were happy to receive materials such as a children's book to discuss with their children, I first met them and told them a bit about the leaflets and the resources that are around for children to help adults talk to children about cancer […] they were quite happy with it in English…em there's a book I did give to them which was one was called Mummy's ill…and kind of explains about cancer and what that is and what chemotherapy is and what is radiotherapy, all that sort of things. (Healthcare Provider, Patient 5, Stage 1 interview)

Another form of emotional support parents wanted to provide was through teaching their children religious practice since this was considered an important part of parenting. One patient hoped that teaching her daughter religious practice would give her daughter emotional support both now and in the future, The other thing that worries me is that she is 13, she does not know namaz [daily prayer] yet, she is still reading the Qur'an. I was saying to her we really need to get on top of that because that is a big obligation as a parent…I say to her that that is really important because I feel that, you know, sometimes you will get comfort from that as well. (Patient 3, Female, Stage 3 interview)

Parents referred to religion in terms of their own emotional coping, performing an important duty as a parent and also providing emotional support for their children. However, they did not describe themselves as relying on or gaining tangible social support from religious networks.

Patchy informal social support networks: we tried to get my sister over…

The responsibility for tangible support fell largely onto the primary carer, most often the spouse of the patient. One of the carers described taking on the majority of her husband's care, which was even more strenuous because she had a young child, I did it myself, I still do now…Enough, what else can I do, he needs care. I used to go out to work and I had to leave that about 6 months ago. It was difficult having a young child too. (Carer, Patient 2, Female, Stage 1 interview)

Extended family, when available, frequently provided support by taking children for overnight visits or watched children while parents were attending doctor's visits or were admitted to hospital. One patient, in the only family where the husband and wife were both born in Scotland, described the role played by extended family, Sometimes we would need to stay in overnight, and my mum would come up with my brother and take the two of them away. Sometimes her mum and dad would come and take them. So the least you have to worry about… (Patient 13, Male, Stage 3 interview)

However, the availability of extended family members varied and participants cited that family members had their own families to care for.

In some families, extended family members lived in other cities or countries and grandparents often had their own life-limiting illnesses. Some families applied for visas for their family members to come from abroad and help with daily life, as one carer explained, We tried to get my sister over from (country) for about six months. She could come and help with the child by picking him up from school. (Carer, Patient 2, Female, Stage 1 interview)

Visas for healthy family members to come and help with social support needs of those who were ill were sometimes denied, even though healthcare professionals wrote visa support letters.

Insecurity and differing perspectives on social support sources: I've got to leave one healthy parent behind

Patients who received formal support services were quite pleased with the services they received. However, some healthcare providers mentioned that they were sometimes unable to gauge the amount of informal social support patients were receiving from family and community networks which would inform the amount of formal social support services needed. As one healthcare provider mentioned, R: Is there anything else that you want to say that I haven't asked you about? P: Em, how much support do people get from Mosque, I mean is it like here? They have to belong to a Church and then the Church rallies round or is it different with the Mosque? (Healthcare Provider, Patient 1, Stage 1 interview)

The same healthcare provider, in response to a question regarding how to increase social support services for South Asians in Scotland, referred to a breakdown in communication, I was in Glasgow on Friday and was told there's a man, Muslim man whose looking after his mum single-handedly and washing her, bathing her and you know it's really not the kind of thing you'd expect from a man to do for a female, either he's not getting the support or what he's getting not just good enough for his mother, you know there are issues there, there's a breakdown somewhere. (Healthcare Provider, Patient 1, Stage 1 interview)

Other patients referred to on-going discussions with their healthcare provider regarding family availability to provide care when requesting access as to services. One patient described an ongoing conflict between herself, the carer and healthcare providers regarding who in her family was available to provide support, But they [formal social support provider] keep telling me ‘you have family.’ And I say, ‘yes, what do you want me to do? Kill them before their time?’ I'm on my way out; I've got to leave one healthy parent behind. (Patient 4, Female, Stage 1 interview)

The nominated healthcare provider explained how resource constraints influenced the agency's policy towards provision of support, making it more likely that they would ask family members to provide care, …our department, Community Care, has changed from the early days—‘we treat this person as an individual, we don't rely on the family’ and all the rest of it—to the complete opposite. If there's family there, they are expected to help because resources are so tight. So initially it was ‘couldn't the children be involved.’ (Healthcare Provider, Patient 4, Stage 1 interview)

In contrast to the above statement made by a healthcare provider, parents felt very strongly against their children being relied on to provide care.

It is important to note that several healthcare providers mentioned resource constraints in regard to providing culturally sensitive services including translated leaflets and providing a choice of homecare attendants. For example, the carer of patient 5 states, while he was open to services such as homecare and a social worker to take the children for outings, cultural differences, such as the homecare worker refusing to take off her shoes inside the home, made care unacceptable, A worker comes in she hoovers the place washes the dishes irons things like this, I asked her to take her shoes off and put some slippers on that we had, she didn't say a word, had some tea and went off after doing her work…she went back and complained they told me to take the shoes off this that and the other. I got rude phone call from her boss. “Excuse me, did you tell her to take her shoes off”? (Carer, Male, Patient 5, Stage 1 interview)

When the carer requested another homecare attendant, he was told there were a limited number of attendants available. Hence, this interview suggests that at times it was difficult for patients to receive culturally sensitive formal social support services.

In summary, patients were open to receiving formal from social support services; however, cultural differences and constrained resources prevented patients and their family members from fully accessing social support services.

Differing perceptions of social support and the role of gender

In discussing the amount of available informal social support, healthcare providers often referred to the gender of the carer, which by some were perceived to be shaped largely by cultural factors. Specifically, some healthcare providers assumed female family members were more involved in providing social support for the patient and the children in the family compared with male family members. Healthcare providers at times referred to their previous experience with South Asian Muslim patients in palliative care settings in the UK, and a few also described that their perspectives stemmed from experiences working in Muslim countries, It has been my experience with the few other Muslim women I have dealt with as well – they have come on their own without their husbands or their partners have seemed to be very much in the background. Muslim women seem to have a more distant relationship with their husbands…White couples do seem to come as equals – may well be that they are estranged equals – but they are there as equals, it seems that South Asian women are much more submissive. They are more clearly different. Husbands often seem so much more traditional. (Healthcare Provider, Patient 3, Stage 2 interview)

In some cases, healthcare providers had difficulties in assessing the roles of family members in providing care to the patient. Culturally shaped gender roles and the importance of maintaining care within the context of the family emerged in several cases. In one case, the healthcare provider described her perception that the patient's adolescent daughter had taken a major role in providing care and a family preference that social support came from within the family, I think (daughter) had helped her mum so much in the earlier stages – helping her managing her menstruation, showering, and everything was so…it's such a lot. (Healthcare Provider, Patient 4, Stage 1 interview)

However, interviews with the patient showed that she did not think her daughter should take on such responsibilities, My daughter was only 12 and I was told you've got family. I said for God's sake, my daughter is only 12. What you want me to do tell her to drop out of school and stay with me all the time? (Patient 4, Female, Stage 2 interview)

One of the largest sources of missing data in this study was from the perspective of male carers. From the perspectives of the patients and those male carers interviewed, it was often mentioned that male carers faced additional stress in regard to maintaining work. However, reportedly few male carers were offered social support services; only one carer (for Patient 4) had attended a support group for carers.

In one family where the male parent was ill, the healthcare provider expressed concern over what she perceived to be his lack of involvement with his children. The patient, however, described how it was very important for him to spend time with his children before he died, The children love me a lot. I love them a lot too…At night we turn the TV off in the drawing room and they come into my room, (wife) goes upstairs the children are with me and we sit and watch TV together for as long as I will allow them…How involved they are with me, people just can't see, I mean when (wife) goes away for a few hours, they're with me and…But if someone comes, I get busy so how can they tell how involved my children are? (Patient 1, Male, Stage 2 interview)

In summary, some healthcare providers in this study had assumptions that male carers were less likely to provide support than female carers as a result of traditional gender roles and that male patients were distant from their children. Also, some providers assumed that female children were carers, which the families did not agree with.