A qualitative study about quality of life in Brazilian families with children who have severe or profound intellectual disability

Abstract

Background This study investigated the psychocultural perspectives concerning family quality of life among Brazilian families with children who have severe or profound intellectual disability. Methods Individual in‐depth semi‐structured interviews conducted with 15 mothers, selected by convenience, were analysed using a categorical thematic analysis technique. The themes were examined to allow for an interpretative approach of the results. Results Mothers revealed that their children with disabilities had insufficient access to services and support related to health care, transportation and recreation. Family quality of life was negatively affected by financial restrictions and social interaction difficulties. Caring for a child with disabilities seemed to be centred on the mother and religious coping appeared as a common psychological adjustment strategy. Conclusions Improving emotional and psychological cares, as well as social and practical measures comprising income support and access to appropriate health care, were inferred to be the mothers’ priorities to improve their families’ quality of life.

State of the Art of Family Quality of Life in Early Care and Disability: A Systematic Review

“…The breakdown of the results found in the studies included in Table 6 is as follows: Ten articles explicitly focus on describing the FQoL in the population of their respective countries. Spain [ 6 , 44 , 62 ] has three studies; Israel [ 32 , 60 ] has two, and Australia [ 36 ], Brasil [ 63 ], Colombia [ 59 ] and Malaysia [ 61 ] have one each. Two articles [ 64 , 65 ] relate FQoL to parental stress in families with children with autism.…”

“…Ten articles explicitly focus on describing the FQoL in the population of their respective countries. Spain [ 6 , 44 , 62 ] has three studies; Israel [ 32 , 60 ] has two, and Australia [ 36 ], Brasil [ 63 ], Colombia [ 59 ] and Malaysia [ 61 ] have one each.…”

“…A wider agreement is reached among the studies that show that the greater the severity of the child’s disability, the lower the degree of QoL in families [ 6 , 79 , 86 , 87 ]. We noticed that although quantitative studies predominate, there is an increase in others that incorporate qualitative [ 42 , 63 , 72 ] or mixed methodology [ 35 , 66 , 67 , 82 ]. We also identified the need of match the methods used with the ethical dimensions of the research.…”

Qualidade de vida de famílias de filhos com deficiência intelectual moderada

“…Curiosamente, os resultados da nossa pesquisa mostraram que o domínio de maior pontuação foi "apoio ao deficiente". O fato de a pontuação nesse domínio ser alta, teoricamente, indica satisfação com os serviços recebidos, em contraposição com resultados de pesquisas brasileiras anteriores, realizadas com metodologia qualitativa, nas quais as famílias demonstraram estar insatisfeitas com os serviços de saúde e educação oferecidos aos seus filhos com DI 7,39 . Porém, é interessante observar que esse também é o domínio que apresentou correlação mais fraca com a QVF total, além de um alfa de Cronbach insatisfatório.…”

Study of the relationships between the health condition, caring in terms of health practice behavior on quality of life of parents of children with developmental disabilities

“…The role of parents is very important in their children's health care, including their health status, continuous and regular participation in exercise, and nutrition management (Boehm and Carter, 2019). Such parental care for their children's health will contribute accordingly to the betterment of the physical ability and improvement of children's health (Yoong and Koritsas, 2012), and it is assumed that the children's health improvement will contribute to the mental health of their parents, but prior studies mostly focus on the level of stress and QoL, rather than identifying the child's health care management as a variable moderating the improvement of the QoL of parents of children with developmental disabilities (Boehm and Carter, 2019;Burke and Hodapp, 2014;Cramm and Nieboer, 2012;Rodrigues et al, 2019;Yoong and Koritsas, 2012). Therefore, this study aimed to learn about how parental health management for children with developmental disabilities affects the QoL of the parents and contributes to the development of a healthy life for the parents.…”