Children with Cerebral Palsy Assess Their Parents’ Influence on the Quality of Their Lives: Implications for Intervention
Article Outline
A planned pregnancy is usually a time of joyous anticipation; parents expect the birth of a healthy, cute, vigorous infant who will give little anxiety while growing up to become an independent, capable adult who will provide grandchildren to cherish and spoil. The premature delivery of their child, or an infant born with an obvious medical problem or an illness that becomes evident later in infancy, provides a brutal awakening from these rosy dreams. Most parents react with anger at this injustice and become depressed and often overwhelmed by this unanticipated and unwelcome blow. How they learn to cope with the challenge will have life-long consequences for them, their affected offspring and other children, and even more distant family members.
See related article, p 56
Cerebral palsy (CP) refers to a static motor deficit of brain origin present since birth or early childhood. It is not a specific disease with a predictable course or cure; rather, it results in a broad range of types and severities of motor handicap, can affect any part of the body, and is often associated with epilepsy or deficits in other skills, notably language and cognition, which may have as much or more to do with quality of life than the motor deficits per se. Most of the time, CP’s full impact is not manifested for several years.
Counterintuitively, this impact on the parents and family may not be all negative, and it may even turn out to have some positive consequences, at least for those with adequate resilience. Yes, parents will have unanticipated time commitments and expenses. To increase their availability, mothers (usually) may have to curtail their personal interests or ambitions, quit their jobs, and give up the family’s second paycheck. Or, if they are in a position to command sufficient income to continue working, they may be forced to import expensive outside help to cope with CP’s multifold demands. Attention to siblings almost inevitably diminishes. The risk of fathers (usually) leaving and family breakup increases.1 In a crunch, grandparents, other relatives, or friends may reluctantly have to be asked for help, which is not necessarily an easy option.
On the positive side, however, rising to the challenge of coping may actually raise some parents’ morale. To their surprise, they discover in themselves unsuspected organizational strengths and parenting skills. They will inevitably meet a number of well-educated professionals and therapists and may discover hitherto unknown community resources and stimulating fields. They may enlarge their circle of friends by bonding with parents of children with CP or other handicaps. To become effective advocates for their children, they may turn themselves into experts by reading or scouring the internet to keep abreast of the latest discoveries and entitlements. A few mothers even return to school to start a new career related to their child’s handicap. Siblings are likely to learn about the realities of life and mutual obligations of family members earlier than their peers. Being called on to help a needy sibling is likely to enhance their maturity, generosity, responsibility, and awareness and tolerance of human differences. In several of my cases, disastrous brain diseases have clearly nudged siblings’ career choices in totally unanticipated directions.
Many studies have considered the impact of chronic illnesses or handicaps like CP on the lives of affected children and their families.2, 3, 4, 5 In a study published in this issue of The Journal,6 a group of child neurologists from Jerusalem point out that not all effects impact just the handicapped child and family unit; some effects are reciprocal as well. This study turned the tables by asking children with CP how their parents’ attitudes and caring styles affected them. It is based on questionnaires completed by 39 school-age children with CP age 6 to 18 years, as well as a sibling and their parents. The children reported that the quality of their lives had more to do with their parents’ management style than with the severity of their motor handicap. This finding differs from previous child reports that focused on the consequences of type and severity of the CP for the child and family.2, 7 The Israeli children’s responses indicated that the 2 factors that correlated most powerfully with a high quality of life for them were their parents’ acceptance of the handicap and willingness to foster autonomy.
According to the parents, the impact on the physical, but not the psychosocial, aspects of their children’s lives was commensurate with the severity of the motor handicaps.8 The siblings’ view was that it was their parents’ mood and acceptance of the handicap, not their socioeconomic level or the degree to which they fostered autonomy, that had the greatest affect on family cohesion and the quality of their lives.
A limitation of the study is the small sample size, given the variability of the manifestations of CP and broad age range of the children. A number of factors contributed to smallness of the sample. One was requiring an IQ of at least 75 in the children with CP, to enable them to respond to the questionnaire. Consequently, the conclusions from this study do not apply to more severely handicapped youngsters, whose care is likely to be much more burdensome. Other restrictions were the need for each child to have at least 1 school-age sibling of normal intelligence and for the family to be Hebrew-speaking, thus excluding recent immigrants to Israel and limiting generalization of the findings to other cultural groups.9
Quality of life of affected subjects and their families is increasingly considered crucial to the evaluation of the multitude of interventions offered for chronic neurologic disorders like CP or epilepsy.3, 10 A number of standardized questionnaires assess the impact of illness (particularly CP) on various aspects of the life of affected individuals, parents, and families,7, 11 but not the impact on the affected subjects of their parents’ coping and affect. Quality of life is a subjective dimension that is more difficult to capture quantitatively. Responses to standardized questionnaires, despite their inherent limitations, yield quite reliable data, especially if averaged over representative groups of subjects.
The novel information from the study by Aran et al6 on the effects of parents’ mood, outlook, and coping strategies on the quality of life of their children with CP needs to be taken seriously and communicated to parents, teachers, and therapists of handicapped children. It indicates that, rather than focusing resources entirely on the needs of the affected child, resources allocated to the emotional support and education of parents, helping them learn to curtail their understandable impulse to be overprotective and overcontrolling of their handicapped child, are likely to pay important dividends in the future. Having a suitable job (fully self-supporting or not) and a social circle of understanding coworkers and friends outside the family are effective safeguards against unwarranted life-long dependence on society and a quality of life that no healthy person would find acceptable. The monetary cost to society over the life span of entirely dependent individuals with CP is considerably higher than the added cost of services to parents to help them cope with their undeserved burden, discover some of its positive consequences, and teach them how to foster self-reliance and independence in their children.
References
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No reprints are available from the author.
PII: S0022-3476(07)00260-0
doi:10.1016/j.jpeds.2007.03.039
© 2007 Mosby, Inc. All rights reserved.
Refers to article:
- Parenting Style Impacts on Quality of Life in Children with Cerebral Palsy
