Children with Physical Disability, Down Syndrome and Autism: Comparison of Family Characteristics in the Maternal Perspective in Brazilian Reality

SPINAZOLA, Cariza de Cássia; CIA, Fabiana; AZEVEDO, Tássia Lopes de; GUALDA, Danielli Silva

doi:10.1590/S1413-65382418000200004

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Research Report • Rev. bras. educ. espec. 24 (2) • Apr-Jun 2018 • https://doi.org/10.1590/S1413-65382418000200004 copy

Children with Physical Disability, Down Syndrome and Autism: Comparison of Family Characteristics in the Maternal Perspective in Brazilian Reality² 2 Financial support: National Council for Scientific and Technological Development (CNPq).

Authorship SCIMAGO INSTITUTIONS RANKINGS

ABSTRACT:

This study aimed to identify and compare the family needs and social support of families of children with physical disability, Down Syndrome and Autism from the perspective of the mothers. A total of 60 mothers of children with disability ranging from 7 months to 6 years of age participated and were divided into three groups: G1 (PD) consisting of 20 mothers of children with physical disability, G2 (DS) consisting of 20 mothers of children with Down Syndrome and G3 (A) made up of 20 mothers of children with Autism. Data collection took place in the mothers’ homes and/or on the premises of a university. The instruments used for evaluative measures were: the Family Needs Questionnaire (FNQ) and the Social Support Questionnaire (SSQ). Data analysis was performed by the mean and standard deviation. A t-test was performed to compare the groups. As for results, related to the needs, significant statistical differences were identified, as follows: G1 presented significant differences in relation to G2 and G3 with regard to financial needs. G2 in relation to the needs of support and functioning of family life and G3 with regard to explaining the situation of the child and child development. Regarding social support, G2 presented a greater number of supportive people, followed by G3 and G1, but G1 was more satisfied with the type of support received. It was concluded that the study may contribute to the knowledge of the main needs and support that families of children with different disabilities have.

KEYWORDS:
Special education; Disability; Family; Mothers

Scale of information needs	Mean	SD	Mean	SD	Mean	SD
Scale of information needs	G1 (PD)		G2 (DS)		G3 (A)
I need more information about the services and supports my child may benefit from in the future.	2.80	0.52	2.65	0.74	2.95	0.22
I need more information about the services and supports that are currently more suitable for my child.	2.70	0.66	2.60	0.82	2.65	0.74
I need more information about how the child grows and develops.	2.40	0.94	2.65	0.74	2.90	0.30
I need more information on how to teach my child.	2.30	0.92	2.70	0.66	2.60	0.68
I need more information on how to deal with my child.	2.25	0.91	2.50	0.76	2.50	0.89
I need more information about my child's disability and specific needs.	2.15	0.99	1.65	0.74	2.40	0.94
I need more information on how to talk to my child.	1.80	0.95	2.30	0.80	2.35	0.93
Subscale total	2.04	0.53	2.25	0.48	2.26	0.48

Scale of support needs	Mean	SD	Mean	SD	Mean	SD
Scale of support needs	G1 (PD)		G2 (DS)		G3 (A)
I need more opportunities to meet and talk to the parents of other children with disabilities.	2.45	0.89	2.60	0.82	2.20	0.89
I need more time for myself.	2.40	0.94	2.65	0.74	2.40	0.88
I would like to meet regularly with a counselor (doctor, psychologist, social worker) with whom I could talk about the problems that my child's disability poses.	2.30	0.92	2.25	0.85	2.10	0.97
I need written information about the parents of the children who have the same problems as my child.	2.05	1.00	2.25	0.85	1.95	1.00
I need more time to talk to my child's teachers and therapists.	1.90	1.02	2.10	0.97	1.90	0.97
I need to have more friends to talk to.	1.85	0.99	2.20	0.95	1.65	0.87
I need to have someone from my family with whom I can talk more about the problems that my child's disability poses.	1.70	0.98	2.35	0.87	1.80	0.89
Subscale total	1.79	0.59	2.01	0.48	1.70	0.61

Scale of needs to explain to others	Mean	SD	Mean	SD	Mean	SD
Scale of needs to explain to others	G1 (PD)		G2 (DS)		G3 (A)
Factor 3 - To explain to others
I need help to know how to respond when friends, neighbors or strangers ask me questions about my child's situation.	1.90	1.02	1.25	0.64	1.75	0.97
I need help explaining my child's situation to other children.	1.80	1.00	2.00	0.97	2,05	1.00
I need more help on how to explain my child's situation to friends.	1.65	0.93	1.60	0.8	2.15	0.93
My husband needs help to better understand and accept our child's situation.	1.40	0.68	1.70	0.98	1.60	0.82
Subscale total	1.35	0.57	1.26	0.48	1.50	0.55

Scale of family community service needs	Mean	SD	Mean	SD	Mean	SD
Scale of family community service needs	G1 (PD)		G2 (DS)		G3 (A)
I need help finding a social and educational support service for my child.	2.20	1.00	2.40	0.82	2.05	0.94
I need help finding a service in case I need (rest, go to the movies, a party, etc.) someone to stay with my child for short periods, and to be able to take on that responsibility.	2.10	1.02	2.00	0.97	2.25	0.97
I need help finding a doctor who understands me and understands my child's needs.	2.10	1.02	1.70	0.98	2.20	0.95
Subscale total	1.64	0.55	1.50	0.58	1.71	0.59

Scale of financial needs	Mean	SD	Mean	SD	Mean	SD
Scale of financial needs	G1 (PD)		G2 (DS)		G3 (A)
I need more help in the payment of expenses such as: food, medical care, transport, technical aids (wheelchair, hearing aid, Braille machine, etc.).	2.50	0.89	2.00	1.02	2.05	0.94
I need more help to obtain the material or special equipment that my child needs.	2.40	0.94	1.40	0.82	1.30	0.73
I need more help to pay for temporary placement services.¹ 1 Services mentioned in the second item of Table 4.	2.00	1.02	1.95	1.00	2.00	1.02
I need more help to pay for expenses such as: therapists, special education institutions or other services my child needs.	1.90	1.02	1.85	0.99	2.20	0.95
Subscale total	1.82	0.57	1.43	0.58	1.51	0.56

Scale of family life functioning needs	Mean	SD	Mean	SD	Mean	SD
Scale of family life functioning needs	G1 (PD)		G2 (DS)		G3 (A)
Our family needs help to discuss problems and find solutions.	1.45	0.82	1.85	0.99	1.80	0.95
Our family needs help to find ways, in difficult times, to support each other.	1.45	0.75	1.95	1.00	1.70	0.92
Our family needs help to decide who will do the housework, who will look after the children, and other family tasks.	1.15	0.49	1.45	0.82	1.25	0.64
Subscale total	1.09	0.50	1.42	0.67	1.30	0.59
Scale total	1.99	0.49	2.07	0.40	2.05	0.47

Social Support Questionnaire	Total of supportive people	Mean	Total of supportive people	Mean	Total of supportive people	Mean
	G1 (PD)		G2 (DS)		G3 (A)
To whom you think you are an important part of their life	46	2.30	55	2.75	62	3.10
Who you feel that truly and deeply likes you	43	2.15	56	2.80	56	2.80
Who you really can count on to listen to you when you need to talk	39	1.95	39	1.95	35	1.75
Who you think really appreciates you as a person	37	1.85	43	2.15	43	2.15
Who you can really count on when you need help	36	1.80	36	1.80	34	1,.70
Who accepts you fully, including the best and the worst of you	33	1.65	35	1.75	33	1.65
Who you can count on to worry about you regardless of what is happening to you	32	1.60	34	1.70	32	1.60
Who you can count on to give helpful suggestions that help you not to make mistakes	31	1.55	32	1.60	32	1.60
With whom you can be totally yourself	30	1.50	40	2.00	26	1.30
Who you think could help if a close relative died	29	1.45	43	2.15	33	1.65
Who you really can count on to listen to you when you're really mad at someone	28	1.40	27	1.35	29	1.45
Who you could really count on to help in case you lost your job	27	1.35	27	1.35	29	1,.45
With whom you can really count on to distract you from your worries when you feel stressed	27	1.35	24	1.20	26	1.30
Who helps you feel that you truly have something positive that can help others	27	1.35	35	1.75	31	1.55
Who you think would help you if a good friend of yours had suffered a car accident and was hospitalized in critical condition	27	1.35	27	1.35	33	1.65
Who you can really count on to help you feel better when you are depressed	26	1.30	29	1.45	28	1.40
Who you think could help if you were married and had just split up	25	1.25	26	1.30	32	1.60
With whom you can talk frankly without having to worry about what you say	25	1.25	27	1.35	28	1.40
Who you can really count on to give you support in important decisions you make	22	1.10	34	1.70	25	1.25
With whom you can really count on to help you if a person you thought was a good friend insulted you and said that he/she did not want to see you again	22	1.10	25	1.25	27	1.35
Who will comfort and hold you when you need it	21	1.05	38	1.90	34	1.70
Who you can count on to tell you gently that you need to improve on something	21	1.05	25	1.25	27	1.35
Who could you really count on to help you get out of a crisis even if that person had to leave her own chores to help you	20	1.00	28	1.40	27	1.35
With whom you can really count on to help you become more relaxed when you are under pressure or tense	20	1.00	22	1.10	26	1.30
Who you can really count on to comfort you when you are very upset	20	1.00	20	1.00	27	1.35
With whom you can count on to listen to your innermost feelings openly and without criticizing you	19	0.95	25	1.25	24	1.20
With whom you can really count on to help you feel better when you are very angry or about to be angry at anything	18	0.90	18	0.90	25	1.25
Scale total	751	37.5	870	43.5	864	43.2

Social Support Questionnaire	Mean	SD	Mean	SD	Mean	SD
Social Support Questionnaire	G1 (PD)		G2 (DS)		G3 (A)
With whom you can be totally yourself	6.00	0.00	5.75	1.12	5.40	1.31
With whom you can really count on to help you feel better when you are very angry or about to be angry at anything	5.90	0.31	5.05	1.60	5.65	1.14
Who you could really count on to help in case you lost your job	5.75	1.12	4.85	2.08	5.40	1.27
With whom you can count on to listen to your innermost feelings openly and without criticizing you	5.50	1.39	4.35	1.81	5.40	1.53
Who you think would help you if a good friend of yours had suffered a car accident and was hospitalized in critical condition.	5.15	1.78	5.95	0.22	5.50	1.28
Scale total	5.63	0.70	5.36	0.95	5.54	0.83

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Children with Physical Disability, Down Syndrome and Autism: Comparison of Family Characteristics in the Maternal Perspective in Brazilian Reality2 2 Financial support: National Council for Scientific and Technological Development (CNPq).

ABSTRACT:

Children with Physical Disability, Down Syndrome and Autism: Comparison of Family Characteristics in the Maternal Perspective in Brazilian Reality² 2 Financial support: National Council for Scientific and Technological Development (CNPq).