|Themes that emerged||Extracted quotes|
|Support group as providing knowledge and a safe space for self-expression||
Providing information and third person view of situation, and triggering realisation of personal involvement in building a knowledge community:|
It has helped me to have a better realization. Other people are going through the same things, the caregivers, and maybe this is making me more aware of things that have been happening in my own situation, and it has broaden up and help me to realize, make me more aware of it, whereas I might have just sort of say “well this is going on but I am not sure what I am going to do but I will just file it away.” It helps to bring our things like that; we talk about that and we share that . . . it helps me to share and help me to realize that it is beneficial for me to share these personal things of my own because other people may be going through them and maybe afraid to talk about or share them.
As a safe space:
You see her [referring to another caregiver], outside she won’t talk. She only chat about everyday thing. Inside, she will talk so much.
It’s a healthy talk. At least somebody listens to me. Normally people won’t listen to you, but in this group you can talk and people will give you feedback, advice.
|Normalization of experiences||
Learning about illness-related, caregiving and lifestyle norms through the group.|
. . . if everyone in the group is same, then I’ll know if it’s a norm, or if people say, “no it’s not a norm, [the patient] shouldn’t be complaining of this”, then I would know.
In observing how others handled the caregiving role and reappraising their situation:
[Another caregiver] is like, how to say, I learnt a lot from her. It really made me see. The first time you see me I was really frustrated, “whether I am just going here, or am I just wasting my time?” Like there is no purpose. But after seeing like [the caregiver], she was feeding her husband, through the tube . . . She take [it] all [in] stride, even though she was tired, she really looked after him. She maybe, I don’t know how to say, [she is] sincere. [These caregivers] are taking it like [it’s] nothing. . . . Right now I know, after all these sessions, what I want to do. It gave me a clearer view on how to manage my mum’s actions and my son’s too.
I feel that I don’t really 100% love him. Maybe I only do 70%, not enough, the love that I give is not strong enough, not like those people [in the support group] who are sharing. . . . [Now I am] not so harsh lah, when my husband tells me, then I just keep quiet. Last time I used to answer back but now I [just say] ‘hm’.
As a form of reassurance:
it helps reassure the caregiver that he/she is doing the max. . . . I was afraid that my caregiving role wasn’t so well done, but the support group shows that I’m coping so it makes me a bit relieved. It gives me a checklist of the things I should be doing, so I can make sure that I’m not deviating too much.
|Experiential learning of coping skills||
. . . you can gather these [visualization skills] from books. With this support group I think the difference is that I experience [it] myself, so I think it makes a difference. I learn what she had shared. I personally experience the technique and they are helpful for me.|
I think on the third session onwards I start to talk to this Malay lady [other caregiver’s name] and today it is like we can share freely. I feel that it will be good if we can share freely. It is like [the psychologist] is being a trainer to us, but between us we are able to share our experiences and interact in that way.
|Challenging negative cognitions||
Reframing cognitions of caregiving situation:|
In the past it used to be “not happy”, when I ask her questions she will keep quiet until I press on, like “eh I’m talking to you”. And she’ll answer reluctantly and negatively. Like the “don’t ask me, leave me alone” kind of attitude, which I can sense. . . . I didn’t realize that she might also be feeling depressed about the situation. I was too concerned about the care that I’m giving her, “Don’t do this. Don’t do that!” etc.
Appraising their own caregiving and noting improvements in the way they coped and provided care:
I think there is an improvement. Before that I am always “why they think this way? Why my mother-in-law think poor of me this way” but now I will stop. Because I did share [in the group], but someone told me that I can have these feelings, but I must always move one step back and look at the whole situation. Don’t always think that you are right.
Shift in worldview e.g. acceptance of uncertainty:
I think the challenge, this uncertainty as part of our new life. Because if you see it as a problem, it will always be a problem and it will always be difficult; this is reality. At this point I am still how to incorporate this factor into my life. I keep thinking that my father’s life is going to be uncertain, then how am I going to live my life—it is not like you are waiting for something to happen and then you can be free; it doesn’t work like that.
Challenging cognitions as a way of problem-solving:
Like I mentioned, I think from the start I was looking at answers. And then when I went through the first session, and the looking at the body language of everyone and the facilitator . . . then I know the gist of the support group is not trying to find the answers. It’s more about providing the listening ear, giving the opportunity, the window to actually speak out things that you don’t speak to anyone else. . . . I think if I were to look for answers instead of trying to understand, or if I not given the opportunity to be given the listening ear, I think things are still the same.
|Feedback included content and structure||
More homogeneity of cancer types, stages and relationship status within the group preferable:|
I’d like to see caregivers who’re caregiving for the same person, sessions just for themselves. Like people who are looking after their spouses. I don’t want to be in a group with 5 other people looking after their spouses in palliative care. Because their emotions and reactions to things will be completely different from mine.
Importance of the physical venue:
If there are too many people there will be too much talk in an hour. The environment was also very good. But it can be better if it were less bright. The space is just enough for the group because I want us to be closer to each other.
I think you all try to kept it to one hour so you all make it available to everybody and also that it is not so taxing for caregivers. But sometimes I find that 1 hour is a bit too short. Like sometimes I find that even if I have things it may not be nice to share for too long or too much because there might not have enough time, I may jump into other people’s time, a bit cautious.
More contextualised examples, and more time for caregivers to share with one another:
‘Cos [psychologist] is maybe theory, don’t really involve, real life experiences or real feelings you see. Unlike those caretakers [sic] right, they really feel it, is a real experience, they are taking care of the patient.