Multiple Birth Families With Children With Special Needs: A Qualitative Investigation of Mothers’ Experiences

Abstract

<jats:p>Multiple birth remains prevalent, with prematurity and subsequent disability being common complications. However, little is known of the experiences of mothers living with the combined circumstances of multiple birth, prematurity, and special needs. This paper reports an exploratory study using the qualitative technique of thematic analysis, to describe and interpret the experiences of 10 mothers of prematurely born multiple birth children with diverse special needs. Mothers were shocked to learn they were carrying multiple fetuses, including those who underwent in vitro fertilization with dual embryo transfer. Most experienced protracted concern over one or more babies’ survival during pregnancy, and prescribed bed rest was frequently associated with increased anxiety and other adverse psychological effects. Some experienced disenfranchised grief, such as those grieving the opportunity to bear a single child. The contrast with experiences of mothers of healthy, term singletons caused considerable distress. Feelings of detachment and unreality were common in the immediate postpartum period, possibly due to transient depersonalization. Having more than one newborn created practical and psychological problems during the neonatal period, particularly when infants were separated due to differences in medical status. The extent to which hospitals accommodated the multiple birth relationship varied and significantly affected mothers’ postnatal experiences. Mothers often felt guilty, particularly regarding inequality of care and attention they were able to provide to each child. This was especially problematic for multiples discordant for special needs status. The presence of one normally developing child complicated adjustment to the other's difficulties, and several experienced chronic sorrow. Serious maternal mental health difficulties were common but not universal. Available formal supports were generally perceived as inadequate, addressing some, but not all, of the mothers’ needs. Further work is needed to advance understanding of the relationships between mothers and their multiples, and to explore the implications of special needs within multiple birth families.</jats:p>

Families with twins - a systematic review

“…Bolch, Davis, Umstad, Fisher (2012) Australia. 39 Objective: to investigate the experiences of mothers with twin children with special needs. Participants: mothers with twins between 12 months and 6 years old with a history of admissions to the Neonatal Intensive Care Unit (NICU) (n=10).…”

Identificação dos efeitos dos filhos nas relações familiares

“…The value obtained was 0.82, which allowed to conduct factor analysis. According to the author's recommendations, first the value of items whose response were negative was inverted, i.e., items 4,6,7,8,9,10,12,16,17,18,19,21,22, 24 and 26.…”

“…(5) The demands of the parent role is even greater with twin children, and in this sense, research indicates that mothers of twins report difficult experiences more frequently, and present higher levels of stress and symptoms of depression. (6)(7)(8) In families with twins, role renegotiation and work reorganization take on particular relevance for the couple, for taking care of two or more children of the same age and with the same needs becomes a taxing job that is almost impossible for one person to accomplish alone. The demands of twin children can bring multiple vulnerabilities and difficulties to the families, on the level of daily management, as well as increasing the family's financial needs and making it challenging to have a social life.…”

Social- and Health-Care Professionals’ Meetings with Multiple-Birth Families—Challenges and the Need for More Training and Education

“…The main concepts in phenomenological research are the development of an understanding of meaning, the study of some human concern, lived experience, the lifeworld, and reduction [10]. The researchers' goal is to understand the meaning of multiple-birth family studies have concentrated on the transition into parenthood [34], pregnancy and mothering multiples [4][5][6]18], parenthood [4,5,12,20,22,26], care giving [4,5,20,22], twins' sleeping [2,3,29], and the interactions and relationship between mother and twins and between twins themselves [41,44,51].…”

“…The preterm infants' parents await advice, guidance, and support from professionals [18]. If multiple-birth children are born prematurely, born through a cesarean section or are taken into hospital care there are more challenges for the parents [6,40]. If there is a situation where the infants have to be separated due to differences in medical status it could create practical and psychological problem during the neonatal period [6].…”