Family reactions and coping strategies in response to the physically ill or handicapped child: A review

doi:10.1016/0277-9536(83)90218-6

Social Science & Medicine

Volume 17, Issue 14, 1983, Pages 913-931

https://doi.org/10.1016/0277-9536(83)90218-6 Get rights and content

Abstract

This article reviews a broad range of clinical and research material investigating the coping processes of individuals and families, particularly in response to a serious illness or handicapping condition in a child family member. The interactive effects of family and illness are established; then several theoretical, descriptive and empirical theories of coping are presented. Coping responses of family members and the family unit as a whole to minor illness, to chronic illness and handicapping conditions, to childhood cancer, and to death in childhood are all discussed. The article concludes with a discussion of the implications and benefits for the physician and other health care professionals in adopting a family-oriented treatment approach.

References (219)

I.B. Pless et al.
A measure of family functioning and its application
Soc. Sci. Med.
(1973)
E.J. Chen et al.
Family structure in relation to health and disease: A review of the literature
J. chron. Dis.
(1960)
E.G. Nahigian
Minor procedure becomes major for child, mother
AORN J.
(1979)
D.D. Jackson
Family practice: A comprehensive medical approach
Compreh. Psychia.
(1966)
J.A. Chapman et al.
Helping a child to live whilst dying
The Lancet
(5 April, 1980)
B.M. Korsch et al.
Experiences with children and their families during extended hemodialysis and kidney transplantation
Peds Clin. N. Am.
(1971)
R.A. Gardner
Psychogenic problems of brain-injured children and their parents
J. Am. Acad. Child Psychiat.
(1968)
T.R. Hadley et al.
The relationship between family developmental crisis and the appearance of symptoms in a family member
Fam. Process
(1974)
C.M. Worby
The family life cycle: an orienting concept for the family practice specialist
J. med. Educ.
(1971)
T.J. Litman
The family as a basic unit in health and medical care: a social behavioral overview
Soc. Sci. Med.
(1974)

J.J. Alpert et al.

A month of illness and health care among low-income families

Publ. Hlth Rep.

(1967)

H.B. Curry

The family as our patient

J. Fam. Pract.

(1974)

E.M. Pattison et al.

Family health care with special emphasis on the U.S.A.

J. Geyman

Family Practice: Foundation of Changing Health Care

(1980)

L.P. Carmichael

The family in medicine, process or entity?

J. Fam. Pract.

(1976)

I. Courant

The patient does not come alone. A systems-oriented approach by the general practitioner

Huisarts en Wetenschap

(1981)

R.S. Illingsworth

Paediatrics: some related psychological trends of the last thirty years

Acta paedopsychiat

(1978)

W.W. Grant

What parents of a chronically ill or dysfunctioning child always want to know but may be afraid to ask

Clin. Pediat.

(1978)

J.M. Lewis et al.

No Single Thread: Psychological Health in Family Systems

(1976)

J.P. Geyman

The family as the object of care in family practice

J. Fam. Pract.

(1977)

M. Rutter

Protective factors in children's response to stress and disadvantage

Annl. Acad. Med.

(1979)

M. Rutter

Stress, coping and development: Some issues and some questions

J. Child Psychol. Psychiat.

(1981)

J.G. Miller et al.

The family as a system

N.W. Ackerman

Treating the Troubled Family

(1966)

D.D. Jackson

Communication, Family, and Marriage

(1974)

M.E. Kerr

Family systems theory and therapy

D. Kanton et al.

Inside the Family

(1977)

M. Andolfi

Family Therapy: An International Approach

(1979)

S.L. Jones

Family Therapy: A Comparison of Approaches

(1980)

I. Goldenberg et al.

Family Therapy: An Overview

(1980)

I.R. McWhinney

An Introduction to Family Medicine

(1981)

K. Okane

Behavior characteristics of children in extended hospitalization

Jap. J. Nurs. Art.

(1978)

F. Henningsen

Psychotherapeutic care of dying and critically ill children and their relatives

Munchener medsch. Wschr.

(1981)

F. Henningsen

Psychotherapeutic support for critically ill children

Munchener medsch. Wschr.

(1981)

G. Van der Schyff

The role of parents during their child's hospitalization

Aust. Nurs. J.

(1979)

G.M. Veeneklaas

Child, parents, sickness and hospitalization

Acta paedopsychiat.

(1979)

P. Tonkin

Parent care for the low risk and terminally ill child

Dimens Hlth Serv.

(1979)

C. McCawley

Report on observation visits to pediatric hospitals

Lamp N.S.W. Nurs. Ass.

(1981)

C. McCawley

Family-centered care: A trans-atlantica study

Aust. Nurs. J.

(1981)

P.J. Harris

Children in the hospital: How parents feel

Nurs. Times

(14 October, 1981)

J.H. Medalie

The development and transmission of health and disease with particular emphasis on the family

R.J. Meyer et al.

Streptococcal infections in families: Factors altering individual susceptibility

Pediatrics

(1962)

B. Bursten

Family dynamics and illness behavior

GP

(1964)

J.M. Lewis

How's Your Family?

(1979)

R. Peachy

Family patterns of illness

GP

(1963)

B.R. Kellner

Family Ill Health

(1963)

S. Potash et al.

The family

D. Mechanic

The experience and reporting of common physical complaints

J. Hlth soc. Behav.

(1980)

C.W. Buck et al.

Family patterns of illness: The effect of psychoneurosis in the parent upon illness in the child

Acta Psychol. Neurol. Scand.

(1959)

M.H. Becker et al.

Mother's health beliefs and children's clinic visits: A prospective study

J. Communit. Hlth

(1977)

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Family reactions and coping strategies in response to the physically ill or handicapped child: A review

Abstract

Soc. Sci. Med.

J. chron. Dis.

AORN J.

Compreh. Psychia.

The Lancet

Peds Clin. N. Am.

J. Am. Acad. Child Psychiat.

The relationship between family developmental crisis and the appearance of symptoms in a family member

Fam. Process

The family life cycle: an orienting concept for the family practice specialist

J. med. Educ.

The family as a basic unit in health and medical care: a social behavioral overview

Soc. Sci. Med.

A month of illness and health care among low-income families

Publ. Hlth Rep.

The family as our patient

J. Fam. Pract.

Family health care with special emphasis on the U.S.A.

Family Practice: Foundation of Changing Health Care

The family in medicine, process or entity?

J. Fam. Pract.

The patient does not come alone. A systems-oriented approach by the general practitioner

Huisarts en Wetenschap

Paediatrics: some related psychological trends of the last thirty years

Acta paedopsychiat

What parents of a chronically ill or dysfunctioning child always want to know but may be afraid to ask

Clin. Pediat.

No Single Thread: Psychological Health in Family Systems

The family as the object of care in family practice

J. Fam. Pract.

Protective factors in children's response to stress and disadvantage

Annl. Acad. Med.

Stress, coping and development: Some issues and some questions

J. Child Psychol. Psychiat.

The family as a system

Treating the Troubled Family

Communication, Family, and Marriage

Family systems theory and therapy

Inside the Family

Family Therapy: An International Approach

Family Therapy: A Comparison of Approaches

Family Therapy: An Overview

An Introduction to Family Medicine

Behavior characteristics of children in extended hospitalization

Jap. J. Nurs. Art.

Psychotherapeutic care of dying and critically ill children and their relatives

Munchener medsch. Wschr.

Psychotherapeutic support for critically ill children

Munchener medsch. Wschr.

The role of parents during their child's hospitalization

Aust. Nurs. J.

Child, parents, sickness and hospitalization

Acta paedopsychiat.

Parent care for the low risk and terminally ill child

Dimens Hlth Serv.

Report on observation visits to pediatric hospitals

Lamp N.S.W. Nurs. Ass.

Family-centered care: A trans-atlantica study

Aust. Nurs. J.

Children in the hospital: How parents feel

Nurs. Times

The development and transmission of health and disease with particular emphasis on the family

Streptococcal infections in families: Factors altering individual susceptibility

Pediatrics

Family dynamics and illness behavior

GP

How's Your Family?

Family patterns of illness

GP

Family Ill Health

The family

The experience and reporting of common physical complaints

J. Hlth soc. Behav.

Family patterns of illness: The effect of psychoneurosis in the parent upon illness in the child

Acta Psychol. Neurol. Scand.

Mother's health beliefs and children's clinic visits: A prospective study

J. Communit. Hlth