Table 2. Direct and indirect effects on the families with children with ZIKV-associated microcephaly according to participants.
Area | Sub-area | Highlights and quotes |
---|---|---|
Individual spheres | Motivation | • Change habits (wake up early and do exercise) • Self-motivation to keep going (great spirit of overcoming) • Start studying Nursing at University “My therapy is to get up early and exercise [. . .] because before, I was just crying, I didn’t even wake up from bed [. . .] I said ‘I’m going to wake up early every morning’ and it’s what has helped me the most. Because I go [running] from 4 to 5:30 am” (María, 32 years old) “My family was not expecting that I had such a good score [for enrolling at University] because of the child. But I always had in mind that I had to fight for him, I had to have a good score for him [microcephalic child]. Everything that I have proposed to myself now is for him” (Guadalupe, 18 years old) “Sometimes I feel alone because it’s tough, every day the same routine; one gets bored. But I know that I decided to continue and the main support of [name of his baby] it’s me!” (Carla, undefined age) |
Religiosity | • Stronger religious beliefs • Religion/spirituality was a coping mechanism for families to try to explain to themselves why they delivered a child with microcephaly • Religion/spirituality was mentioned as an explanation to refuse a termination of pregnancy as it was believed to be “God’s will” • Religion/spirituality provided them strength to continue with their lives and take care of the baby • Religion/spirituality makes them believe their children will improve (i.e. walk or talk) “Sometimes they say to you ‘No, no, the girl is not going to walk’. The healthcare professional says one thing and God says another one [because this child can walk]” (María, 32 years old) “For a reason God wanted to send him to us” (Nadia, 21 years old) “God took the decision that she had to live” (Judith, 29 years old) |
|
Social networks | Partner | • More attached now, better relationship • Does not want to take responsibilities on the baby • Abandon them • Started having unhealthy habits (alcohol abuse) • Stopped them from having other children, until the microcephalic child is “self-sufficient” • Stopped them from having other children because nobody assured them that microcephaly was a cause of Zika virus infection, and they are afraid of a congenital disease another child could inherit “I cannot complain, because I had support from my family, especially from his father [of the baby] because… [she starts crying] there are fathers that abandon their children… [crying] There are fathers that left mothers alone with their [microcephalic] babies, I saw it” (Carla, undefined age) |
Relatives | • Lack of contact with relatives who do not accept the child • Biological parents abandoned the child • Support from their relatives “Sometimes there is not enough money, then they [relatives] always cooperate with us” (María, 32 years old) |
|
Other children within the family (siblings) | • Worsening of mental health • Does not feel prioritized • Responsibility to take care of the baby when their mum is not at home or need to accompany them to therapies • Made her change her mind in her future career, to study physical therapies to attend children “My older daughter is still really affected [by having a microcephalic sister]. I am going to look for a psychologist for her because sometimes she is normal, and others, she’s crying, and crying, and crying for [name of microcephalic child], because she cannot walk, is not improving…” (María, 32 years old) “It’s tough for his sister to know that we give him [microcephalic child] lots of love, and not to her [normocephalic sister]” (Adelaida, 27 years old) |
|
Group of mothers with children with microcephaly | • They meet with their children and see their progresses • They talk and give advices to each other • They practice sport together “Just by social media one talk to another, about the child that has something or another thing… but with time everything gets monotony, because they are all the same way, and so, the moment arrives that we don’t talk about the babies, we don’t know what to say [. . .] at least, we support each other, what for? ‘We can do this, or this [to the baby]’ among us… Because there’s no support… governmental support, or from other people to help us, just us. If a child has something ‘You can solve it with this’ or a drug that he takes I say ‘Well, this is happening, you can give this [to the baby]’” (Adelaida, 27 years old) |
|
Socio-economic context | Economic | Already poor families have decreased their incomes by several reasons: • Not able to study or work outside the home and need to take special attention to the baby 24h a day. One interviewee sells refreshments and sweets at home, as that is the only thing she could do while staying home taking care of the child. • Children need to attend several different medical specialists’ different days and on different locations: paediatrics, infectiology, physiatry, among others • Children need to attend neurodevelopmental therapies every day or at least twice a week Hard decisions are taken by some families: ‘to eat’ one day or ‘to go attend therapy’ • Some relatives refused to take care of the microcephalic child. One interviewee declared that her daughter and her son-in-law left their child with her (biological grandmother) and did not provide economic support either. “In therapy, they only give me 5000 pesos [to attend the visit]” [5000 Colombian pesos corresponds to 1.4 USD]” (Nadia, 21 years old) “[The health centre] does not support us. They only support the children that need to come from outside the city” (Carla, undefined age) |
Psycho-social | • Some woman received counselling, they talk to psychosocial workers while the children are in therapy • Others, complain about the lack of psychosocial support available for these families • Mental health of the mothers and other family members worsened during these years “During children’s therapies there are psychologists that take some time for us also. They help us talking to express how we feel, we get relieved” (Georgina, 43 years old) “One feels alone, sincerely, from the government, from society, and from a lot of people that surround us, sometimes even from family members” (Adelaida, 27 years old) |