Academic journal article Journal of Psychosocial Research

Burden of Care and Parent-Child Relationship of Parents of Autistic Children

Academic journal article Journal of Psychosocial Research

Burden of Care and Parent-Child Relationship of Parents of Autistic Children

Article excerpt

INTRODUCTION

All parents wish for a healthy baby, but some parents though not by their choice are gifted with a special child, like a child with Autistic Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder, Mentally Retarded (MR), Down Syndrome and so on. Some Parents are able to cope up with such a situation whereas, other experience psychological problems (Peshwaria, R. A. and Ganguti, R. et al., 1995). Many parents experience periods of disbelief, deep sadness and depression and self-blame and guilt whereas others experience helplessness, feelings of inadequacy, anger, shock and guilt (Gupta and Singhal 2005).

According to the DSM-IV, child autism is defined as a pervasive developmental disorder having the following main characteristics: (a) qualitative impairment in social interaction; (b) qualitative impairment in communication; (c) restricted repetitive and stereotyped patterns of behaviour, interests, and activities; (d) delays in at least one of the following three areas: social interaction, language as used in social communication, symbolic or imaginative play. The Key building blocks for social relationships (i.e., communication, social understanding, and emotional responsiveness) are impaired in individuals with autism (Travis and Sigman, 1998).

The birth of an autistic child adds situational crisis, one that results from an unanticipated, traumatic event beyond parental control. When parents become aware of their child's disorder they are inevitably shocked and painfully surprised that they must suddenly adjust to the new role as the parents of an exceptional child and they must adjust their self-image to cope with new responsibilities and functions (Gregory, 1991). The presence of a child with developmental disability in the family calls for a lot of adjustment on the parents and other family members (Peshawaria R, Venkatesan S. 1992)

Review of literature revealed that the presence of a child with a disability or illness is stressful for parents especially mothers but most of the studies are done outside India. Studies pertaining to burden of care and parent child relationship of parents of autistic and normal children are almost nil. In view of this, the present study is taken up with the main objective of doing a comparative study between the parents having an autistic child and those with a normal child, evaluating their quality of life, burden of care and the parent-child relationship.

Hypotheses

Proposed hypotheses of the study are

Ha1. The parents of *autistic children and parents of **normal children differ significantly on Burden of care.

Ha2. The parents of *autistic children and parents of **normal children differ significantly with respect to parent - child relationship.

METHOD

Participants

The sample for the present study includes 107 parents of autistic children (57 mothers and 50 fathers) and 118 parents of normal children (67 mothers and 51 fathers). The age group of the sample is between 30 - 45 years. The sample for this study was delimited to accessible, biological mothers and fathers of children from Pune and Mumbai city of Maharashtra, diagnosed with ASD four and above years of age or under by a qualified health care provider. The mother/father of the diagnosed child had to live with, provide care for and raise the child. To reduce measurement error, the sample was delimited to mothers who read as well as understand English/Marathi or both. The diagnosis of the child was within two year of this study and done by a valid and reliable screening tool or multi-professional team during the preschool-age years.

MATERIALS AND PROCEDURE

1. Burden Assessment Schedule (Thara et al., 1998). BAS is a most frequently used tool to asses the burden of care of psychiatric patients in India. It measures burden in nine areas: (a) Spouse related (b) Physical and mental health (c) External support (d) Care-giver's routine (e) Support of patient (f) Taking responsibility (g) Other relations (h) Patients' behaviour (i) care-givers' strategy. …

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