Table 3 Summary of FGD and IDI findings
Topic | Emerging themes |
|---|---|
Experiences Related to Diagnosis | a) Long journey to final diagnosis Many caregivers shared how difficult it was to get their child diagnosed. For example, LL faced a delayed in reaching a diagnosis of SMA and a long arduous journey filled with confusion and uncertainty, often met by dismissive or even insensitive health professionals “I think about for one year plus we were searching for treatments, for one whole year! To our disappointment we can't find anyone, nobody seemed to know. Many doctors do not know actually. Very sad to say.” (Mrs LL to 20-year-old daughter, SMA Type 2) b) Dismissive healthcare professionals “Doctors lack empathy and did not offer much help. The doctor said ‘eh, you know or not your child ah, can’t live long. I can only give you a period of a maximum of 2 years.” (Mr BB, father to 2 deceased SMA Type 1 children) c) Acceptance and coping with the diagnosis Caregivers expressed various emotional responses knowing the outcome and diagnosis of the condition. This was stressed by Mrs XX on her poor preparation and guilt “There is a feeling of guilt, like there is something with my pregnancy, because I could not comprehend at that time. Actually, at that time, we do not understand the seriousness of the diagnosis… in one to two years I [still] cannot accept [the diagnosis].” (Mrs XX, mother of 2 SMA Type 2 children) “We have come to accept it, a lot of people see the way we provide for my child and asks if I am tired? I said yes, it is definitely tiring, then they ask if I am angry, I say I am not angry at all.” (Mr AA, father of 21-year-old, SMA Type 3) PWSMAs, on the other hand, grew up knowing they are different from other children and understood the information at a much older age. Most of them echoed similar experiences of the caregivers for being misdiagnosed after many hospital visits. Additionally, various factors such as type of upbringing and religious faith play key roles for PWSMA in accepting and coping with the diagnosis “I think growing up, it was, kind of complicated because I always wondered why am I weaker than others, I thought there is something wrong, I didn’t really understand, like for example why can’t I run like the other boys? Why they are faster than me? Why do I get tired so fast?” (Mr G, 22 years old, SMA Type 2) “Whenever I recovered from a febrile illness, I somehow seemed to lose something within me. I could no longer able to lift my hands up. Previously I was able to hold my books, remove them from my school bag; but when i got older, those similar sized books were much heavier; I needed my classmates’ assistance to put my books from my bag to the table, and eventually I could no longer do it by myself.” (Ms D, 42 years old, SMA Type 2) “I didn’t know about SMA, until my 15-year-old sister had her 1st hospitalisation (and her last) [younger sister succumbed to the illness], then I googled about SMA… but nothing really changes. Everything is still the same (after knowing I have SMA) because my parents taught us to be positive.” (Ms B, 23 years old, SMA Type 3 who only ‘found out’ about SMA when she turned 18) “Because my parents had neglected my medical condition for too long… the pain was no longer bearable… I was brought up with the belief that I was lazy… because they always tell me that you are lazy that’s why you can’t lift your arms, can’t walk, can’t balance, and if you fall down, they think, I was doing it on purpose… feeling negative the whole time. So, after I knew about the diagnosis, I started researching, learning and teaching myself about SMA. I was diagnosed with depression when I was 20 years old and was suicidal; and needed to be on medication (Ms. A, 23 years old, SMA Type 3, who grew up with a single mother who suffered from depression and schizophrenia) “I grow up with strong faith, religion, so, yeah, I rely on that a lot.” (Mr G, 22 years old, SMA Type 2) |
Psychosocial impact of SMA | Among the PWSMA, the key themes that emerged were juxtaposed between some feeling self-doubt, loneliness and depression where else some say SMA brought their family closer together a) Self-doubt & inner turmoil “I grew up always questioning ‘Why am I weaker than others?’, ‘Why can’t I run like the other boys?’, ‘why do I always fall down? What am I? Am I special? I realised I am just different from the rest.” (Mr G, 22 years old, SMA Type 2) b) Depression “I have a lot of things to worry about, because I don’t have support from my family, most of the time I am alone, especially in dealing with problems, just by myself, no one to turn to, so it can be quite difficult, sometimes I feel really tired, and the suicidal thoughts would come again, and repeat itself.” (Ms A, 23- year old, SMA Type 3) c) Unsupportive schooling environment & bullying “In primary school, I think that was the hardest time of my life because I faced many challenges in primary school like for instance my class room was on the first floor and the teachers weren’t very, I would say supportive, like my parents talked to them but still they didn’t put class downstairs.” (Mr G, 22 years old, SMA Type 2) “There was an incident of bullying because of my condition, I couldn't lift my head up. One of my classmates pushed my head down and left me there until another classmate called my helper in to help me and lift my head up.” (Mr E, 29 years old, SMA Type 2) d) Fostered meaningful relationships “This condition makes me actually closer to my family, because I rely on them for help, and by relying on them for help I actually form a good bond, a good relationship, whether I like it or not, ha-ha, I think if without this I will probably be on my own, you know, probably will not be spending much time with them.” (Mr G, 22 years old, SMA Type 2) “Hang out every other day. Ah…amazing people. They are all either extremely creative or extremely intelligent. We do the whole dinner table conversations with like usually six to a lot of people.” (Ms C, 32 years old, SMA Type 2) Among caregivers, many struggled with their changing lifestyles, stress, anxiety, burnout and financial burdens a) Changing lifestyles “For family occasion, kenduri(ceremony), weddings, I would reject invitations from all my relatives. I never went.” (Mrs PP, mother of deceased SMA Type 2) “I tend to cut down on all my social activities. So family is everything. We take him as much as possible for family outings. Furthermore, going out as a couple has become a rare occasion as at least one parent has to stay at home in the evening.” (Mr CC, father to 23-year-old SMA Type 2) b) Stress, anxiety and burn out “At times we become angry. Then we calmed down. The test from God is great.” (Mr HH, father to 2 surviving SMA children) “Sometimes we can’t take care of our daughter, because we are paying more attention to our son and we do feel bad.” (Mr CC, father to 23-year-old SMA Type 2) c) Financial burdens “Because I work as a lorry driver with a daily-paid salary (and my wife is not working), whenever my son gets admitted into hospital, I have to take leave; if I don’t work, then I have no income.” (Mr NN, father of two deceased SMA Type 1) “From the aspect of cost because oxygen machine, suction machine all that we bought on our own. We did not receive any help from anywhere.” (Mrs NN, mother of two deceased SMA Type 1) |
Worries and concerns | When discussing worries and concern, independence is a recurring theme of all the interviews. Participants also discussed social discomfiture and the lack of infrastructure for the differently abled in Malaysia a) Functionally independent “I worry the most right now would be not being able to live independently in the future, yes, because I know my parents will not always be there for me, so wondering that if I will be able to find a way to live independently you know, when my parents are not there, so that’s what worries me the most.” (Mr G, 22 years old, SMA Type 2) b) Financially independent “His condition and that would affect his independence, and of course, there’s also another thing, affordability, affordability means, what would be his financial situation at that point of time?” (Mr CC, father to 23-year-old SMA Type 2) c) Social discomfiture “Other family members, they just see that my sister and I can’t walk, can’t do things. Even the well-educated ones, a cousin who is a doctor, when we tried to explain about SMA, they don’t want to know.” (Ms B, 22 years old, SMA Type 3) “The infrastructure in Malaysia is really incomplete, because you have these disabilities pathways which suddenly break off in the middle, and you don’t know where that leads to. A huge problem with the lifts, if they break down, if people are trying to get in the lift, even though they see there is a wheelchair there, they don’t wait for me [to get out] so I just drag myself to the side, and I just let them all go in there, and I will just wait for the next one. The facilities are not maintained, the inconsideration of people parking in disabled spots.” (Ms A, 23-year old, SMA Type 3) |
Future hopes and wishes | Future hopes and wishes for the future expressed by the participants can be grouped under several themes: a) Access to treatment In terms of new treatment, all PWSMA welcome anything which will enable them to improve their functional abilities and/or slow down the deterioration of their condition “Anything which enable me to gain back ability to take care of myself or it helps to slow down deterioration rate of my condition.” (Ms D, 42-year-old SMA Type 2) “My suggestion and top priority for the government is bring in Spinraza. And put aside a certain allocation, you know, every year for the SMA patients.” (Mr DD, father to 11-year-old SMA Type 3) b) Government to improve medical care services to ensure holistic care post diagnosis There is a need to provide support and assistance to families such as access to palliative care, mental health and counselling services, equipment rental, respite care services, etc “I think palliative care is very important. The palliative team needs to come in and talk to the parents. Even if I know my child is going to pass on, but during this period, what is the best I can do?” (Mrs SS, mother to 8-year-old SMA Type 1c) “Counselling for grieving parents, I mean if the parents can talk to somebody, you know, a professional counsellor. To talk to a person who is totally impartial, and a professional to listen, you know. I think it’s important.” (Mrs SS, mother to 8-year-old SMA Type 1c) “Machines like cough assist is required. To help them cough. Others are machine [for] monitoring and nebulizer, so parents need information to use the equipment.” (Mrs XX, mother of 2 SMA Type 2 children) “We are very tired! And, if the adults, or the caregivers are not taken care of, it doesn’t only affect the child with SMA but it affects the whole family. The relationship for their children also.” (Mrs SS, mother to 8-year-old SMA Type 1c) c) Government to improve accessibility and be inclusive The hope for improving the life of children and adults with SMA, as well as for their caregivers are passionately voiced in all IDIs and FGDs “I think the number one thing would be to make places more accessible. Some of us on wheelchair, some of us use stretchers, but I think it’s important to make every place accessible, so as to make our life easier. They have no idea how a small thing such as a ramp can make such a big difference.” (Mr G, 22 years old, SMA Type 2) a) Policymakers to ensure a clear and committed policy direction “If you have a system that appreciates you as a human being you won't be driven to the corner by people who don't know what or who you are. There will be no stigma because stigma has been eradicated by simple laws against discrimination. So, law is very important.” (Ms G, 32- year old, SMA Type 2) |