Copyright Carmel Martin and Meherun Nisa, 1996. One copy of this paper can be made for the purpose of personal, non-commercial use, subject to proper attribution to the authors.

Meeting the needs of children and families in chronic illness and disease. The context of general practice

Carmel Martin, Academic General Practitioner
Meherun Nisa, Research Assistant

National Centre for Epidemiology and Population Health,
Australian National University
Tel 06 249 0715 Fax 06 249 0740


Background: Children with chronic disease and illnessis are a significant group of the population. They also comprise a considerable component of the work of general practice dealing children. Concern is raised that while the emphasis has been on the intercurrent illnesses or specific medical diagnoses, the management of other dimensions of illness including the impact on the family may need greater attention. The trialling of coordinated care with the GP as care coordinators is a stimulus to reviewing the role and responsibilities of the primary care physician in chronic childhood illness.

Objective: To describe common features of different chronic diseases in childhood and generic interventions that are not diagnosis based and their impact on the child and family involved. To explore needs for care and the role of the general practitioner in providing this care in relationship to other providers.

Method: A literature review based on a search of the Medline electronic database. Both quantitative and qualitative articles on the topic of chronic childhood illness and its management in primary medical care settings were selected on the basis of their quality and relevance to the Australian health care system.

Results: The impact of chronic disease on children and families is related less to a specific diagnosis such as diabetes, than to the illness and disability profile and family functioning. Prognosis, predictability, the threat to life or cognitive, social and physical development, the need for medical and surgical interventions, and the functional limitations have a major impact. Chronic illness disturbs the lives of children limiting their roles in schools, recreation, and vocational pursuit. Parents and siblings often experience social, economic and personal disadvantage. 'Mothering' can be highly stressful. Care that is oriented to the 'whole child' and facilitates 'family control' in the various stages of illness and disease promotes better outcomes.

Medical 'case-management' is optimised by continuity of both setting and provider, with a provider who co-ordinates care with specialists and other agencies such as school or day care or social care providers, gives information and explanation about illness, prognosis, behaviour, development and family risk, responds to concerns and day-to-day problems; treats intercurrent illness, and provides health maintainance such as monitoring height, weight and immunisation.

Discussion: The literature indicates that more intensive emphasis on non-disease dimensions of chronic illness and case management approaches should improve outcomes. A paradigm shift is needed with the development of 'best practice' approaches for 'non-categorical' or non-disease based management. This should complement disease-based activities. More evidence is needed about current levels of unmet need in children and their families and how best to meet this need in Australia. Proposed case management reforms are a stimulus to reappraise the input of general practitioners and other providers in childhood chronic illness and disease care.


Children with chronic disease represent a significant proportion of the Australian population.(1) The prevalence of long term conditions (self or parent reported) in the Australian population in 1989-90 was 25 per cent for the under 5 age group and 41 per cent in the 5-14 age group. Chronic conditions were more prevalent for boys across both age groups. The commonest systems involved were respiratory system followed by skin. Almost 16 per cent of childhood encounters in Australian general practice deal with chronic health problems.(2) Chronic illness in childhood presents special challenges.(3) It has biological, behavioural, and social manifestations that have implications for the mental health and social and personality development of the child, and family coping.(4) Elements of care such as psychosocial management, may be overlooked in the pressures to treat and control disease processes in busy clinical practice, if their importance is not stressed by appropriate definition and classification.(5)

Objectives and methods

This paper will review the current literature on 'generic' or non-disease specific chronic conditions in childhood that is relevant to general practice. It aims to summarise a set of broad principles for the care of all children with chronic illness. Principles concerning the effects of chronic illness on children and their families and types of care needed will be detailed. It will discuss the roles and responsibilities of general practitioners in the current health care system.

A search of the Medline electronic database from 1966-95 was conducted. Clinically orientated articles using both quantitative and qualitative methodologies on the topic of non-categorical or generic approaches to childhood chronic disease relevant to primary medical care are included. They were selected on the basis of relevance to Australian general practice and their quality. Publications cited in the selected articles were also explored. Keywords used were chronic disease, chronic illness, chronic conditions, paediatric and child, primary care and general practice. This is a developing field with relatively few publications, mainly located in North America and Scandinavia.

Defining chronic disease and illness in childhood

Different researchers use terminology variously.(6) In this paper, illness refers an individual's perception of the presence of unpleasant bodily sensations, that interfere with their ability to function in a manner acceptable to themselves and the group of which they are a part. Diagnosis defines disease, based on a biomedical classificatory system.(5,7) Chronic (or long-term) refers to a health problem or an episode of care lasting anywhere from 12 months or longer8 to three months actual or expected duration.(9)

All current terminology is problematic and either potentially stigmatising or non-specific. In this paper, chronic disease, refers to the diagnosable pathophysiologic entity that may or may not be symptomatic, while chronic illness refers to the subjective nature of bodily disturbance and how people live and cope with the disruption it can bring. Chronic condition is used to describe disease, illness or both that is or expected to be long term.

The child and family at the centre of care

Increasingly, there has been an emphasis on the commonalities that exist in the experiences of children and their families, adults and the elderly with chronic disease in the medical literature. 'Generic' or 'non categorical' approaches focus on the person or child involved rather than on a condition or pathological diagnosis. Families of children with chronic disease and illness face remarkably similar problems, despite a wide range of diagnoses and biomedical problems in affected children. (4,6)

Pless and Pinkerton, as early as 1975, proposed that issues in dealing with chronic illness, such as prognosis, visibility, nature and time of onset, severity, disability and the routines required in care are most important for the child and family and therefore should all be considered carefully by the health care provider.(10) Stein and Jessop (1989) added that the precise clinical diagnosis of body system and disease category was not particularly helpful in predicting social, psychological and health service use outcomes. Greater diversity existed within diagnostic groups than across them.(5) Factors that seemed to lead to worse family adjustment were: interferences with the daily functioning of a child, normality of appearance, needs for surgical procedures and uncertain outlook. Ambiguous and uncertain conditions in a superficially normal-appearing child posed particular problems in adaptation.(6)

Physical and Psychosocial Resources and Adjustment

The 'whole' child

Chronic illnesses affect the lives of children through the limitations they impose on schooling, recreation, and vocational choice. The resources to support their adjustments to these activities are often lacking in our society that is orientated particularly to the well and able.(11,12,13) These children are at risk of mental health problems, which can often be alleviated with appropriate management.(4,11,14,15)

Chronic illness presents different challenges at different life stages. Illness with its onset in early childhood is interpreted differently by the child from the one that appears during adolescence. In the former, the concerns are fantasies of abandonment, separation and fears about the various procedures that the child cannot understand or does not have explained. To the adolescent, the impairment, mild though it be, is much more likely to evoke concern about the future, perceptions of family life, body image, and the dependency and inadequacy of childhood from which they are trying to escape.(13) The personality of the child prior to illness and pre-existing family dynamics have a significant impact upon adjustment. The child with separation problems is likely to experience difficulties in coping with hospitalisation. A child previously phobic is likely to develop excessive fears of minor procedures. The adolescent or child who fights or resents authority may see chronic illness as an opportunity to fight and contest what is being imposed by the outside world of adults.(13)

School presents particular challenges physically and socially.(12,16) The physical environment may be dusty, mouldy and polluted; contributing to exacerbations of chronic conditions. For example, Pilotto found that children exposed to unflued gas heaters in classrooms, had significantly more respiratory tract problems than those who were unexposed.(17) A social environment that includes verbal abuse and less peer support for ill children may also be a problem. Teachers' insufficient knowledge about illness and inability to spend adequate time with chronically ill children, present barriers to the integration of the chronically ill child into the classroom situation.(12,16) Irregular attendance in class, because of frequent illness, often required more time and personal care from teachers. Lower academic achievement is reported in such children. Bloch concluded that families, teachers and family doctors should have a 'working understanding' of the interaction between the disease and educational attainment in order to facilitate better academic achievement and a more conducive school environment.(12)

Mental health problems

Behavioural problems such as neurosis, attention deficit, hyperactivity, misconduct and school and adjustment problems are twice as common in children with chronic disease as in healthy children of the same age. Weiland and Cadman in two North American studies, found that emotional problems were related to severity of illness and central nervous system (CNS) involvement. Excess mental disorder in those with CNS problems was a direct effect of the disease, while the elevated frequency in those with conditions not involving the CNS represented psychological maladaption.(15,18)

The family

The diagnosis of a chronic condition of any child in a family places at risk, the physical health and emotional well-being of all the members of that family.(11) The daily burden of care on families makes them vulnerable to major psychological and social disturbances. It can also limit parents social life and career opportunities leading to overall life dissatisfaction.(18) The prevalence of parental symptoms is independent of the type of condition, but related to the subjective impact of caring for the child.(18) Siblings often report a sense of being neglected. A review of the literature on sibling impact by Drotar and Crawford in 1985, found that chronic illness was a stressor which interacting with other factors, might contribute to psychological problems in some siblings. Family functioning can promote or hinder sibling adaptation.(20)

Stages of adaptation

The shock of the diagnosis of a significant chronic disease initially precipitates acute stress in most families. Later, except in cases of conditions that are prone to life-threatening episodes such as severe asthma, stress is determined by the family's previous problem-solving abilities and crisis-coping capacities. Rearrangements of family living style, new economic limitations, altered attention to certain members, or additional marital stresses, may strain family coping ability.(13,19)

The special role of mothers

In most parts of the Western world, homecare for the chronically ill child is the responsibility of female relatives, mainly the mother. Despite the fact that it is now the statistical norm for women to work outside the home, cultural beliefs compound the unequal division of labour of mothers and fathers in such care. Three imperatives dominate the work of mothering: to preserve their children's lives; to foster their development; and to ensure that they are acceptable socially.(20) Contemporary social concepts of maternal competence structure the ways in which women make sense of their children's chronic illness. Most mothers enjoy a sense of wellbeing when their children are thriving and experience distress when they are ill or unhappy. 'Constant failure' in these traditional areas of the work of motherhood and constant exposure of the 'failure' threaten maternal competence.(20)

In her review, McKeever highlighted the awesome tasks confronted by mothers with very ill children.(22) These mothers faced worry about the child's prognosis, and stress in dealing with complex, sometimes life-threatening problems, without training, as well as dealing with disjointed medical and social services and living with the uncertainty. A child's failure to achieve normal milestones is another potential source of maternal distress. The privacy of the mother-child relationship is accessible to professional scrutiny. Professionals frequently judge mothers' 'acceptance' of the situation to be an important reason behind the success or failure of treatment. Such motherhood is generally stressful and demanding.(22)


Child neglect is the most prevalent form of maltreatment; more children die of neglect than abuse.(23) Neglect is more prevalent than physical abuse among the population of children with chronic disease and illness; namely medical care neglect, educational neglect, abandonment, emotional neglect and physical neglect. It can result from the great demands on families to assume responsibilities for the child at home, the financial burden, worry about prognosis, feelings of grief and guilt, frustration with the system of care and ultimately lack of support for the family. Neglect can be a significant (and even fatal) factor. It can cause and compound short and possible long-term morbidity. Neglect is a particular barrier to interventions aimed at secondary and tertiary prevention. Non-compliance with medical prescription was a frequent form of neglect for children with a variety of diagnoses including asthma, epilepsy and diabetes. Other neglect can include the failure to administer home therapies (such as exercises, speech therapy). Social, emotional, educational and physical neglect tend to co-exist. They are likely to be linked to poverty and diminished resources, in common with childhood chronic disease and illness.(23,24)

Social Disadvantage

Boys and girls in low-income families suffer 42 percent and 24 percent more serious chronic illness respectively than children from other families.(24) Asthma, bronchitis and other chronic illnesses are significantly more common in children if there is maternal smoking, which is more common in socially disadvantaged households. Children from residential areas which are designated as relatively disadvantaged have lower immunisation rates and higher death rates.(24)

Health Care Needs in Biopsychosocial Domains

Because of the broad domains of life affected by chronic illness, many children require complex treatments from multiple health care providers. This places their care at risk of fragmentation, duplication and overlap.(25) Personal continuity of care is an important feature of health care provision, together with proximity and accessibility to a primary provider. 'Trust' needs to develop through a longstanding acquaintance with the main health care provider. Parental satisfaction is chiefly derived from sufficient consultation time to discuss concerns. On the other hand, inadequate communication between primary care physicians, specialists and other members of the health care team is a major source of dissatisfaction.(3,11)

The role of the general practitioner as physician of primary health care

There is little published literature and one Australian paper on the role of the general practitioner in managing 'generic' or non-categorical chronic disease in childhood. However, these children have high rates of attendance at general practice or primary care physician offices.(3,25) A Canadian study found that in a six month period, 80 per cent of children with a chronic illness or condition associated with a functional limitation saw a primary care physician.(17) The GP may spend much of the time providing episodic treatment for acute respiratory problems, prescriptions and specialist referrals.(3,11,15,17,25) Discussion of psychosocial and other non-medical 'generic' concerns is highly important as unfulfilled expectations of psychosocial management are associated with greater dissatisfaction and may impact upon coping ability.(26)

Stein and Jessop found strong evidence of better psychosocial outcomes in children when interdisciplinary care was co-ordinated and the primary care physician took a lead role.(14) Children were randomised to normal care or to co-ordinated case management with an interdisciplinary team providing comprehensive primary care, support, co-ordination, advocacy and education to the child and families. Families receiving the intervention showed significantly improved psychological symptoms in the child at six and twelve months and less psychiatric symptoms in the mother. The children in the program for the longest, showed the greatest improvement suggesting a dose-related effect.

'Medical Case management'

Jessop and Stein, conducted a detailed longitudinal study of children with chronic disease with an emphasis on 'non-categorical' approaches.(26) Non-categorical management is most effective with continuity of both setting and provider, with a provider who:
co-ordinates care with specialists and other agencies such as school or day care;
gives information and explanation about illness, prognosis, behaviour, development and family risk;
can listen to concerns and day-to-day problems;
can treat intercurrent illness, and
monitors health status for example monitoring general health such as height and weight.(24)
New methods of health and social care including case management need exploration in Australia. Current approaches may not achieve the desired outcomes if they donot empower the child and their family


Living with chronic conditions can be very difficult for the child involved, their parents and siblings. Psychosocial morbidity is a likely consequence, that can be ameliorated with appropriate interventions. The evidence suggests that doctors are less likely than expected to become involved in illness management and are more focussed on disease.(2,27) A national survey of recent Australian medical graduates, indicates they had little training in assessing psychological adjustment to illness, disability and handicap.(28)

We need to ask, who is currently managing chronic illness in children and their families in Australia? United States, Canadian and Swedish population based studies indicate a particular need for improvement of service co-ordination and psychosocial support. Psychosocial adaptation and access to appropriate medical, welfare, social and economic resources, may need particular attention. Neglect and a viscious cycle of poverty may otherwise occur.

General practitioners have an important contribution to make in chronic disease management in childhood in Australia. A significant proportion of their work is with children with chronic diagnoses, occurring in almost 16 per cent of all childhood encounters.(2) Some disease-specific issues need specialised and bio-medical attention. However, chronic disease commonalities are particularly amenable to management by the GP. Important features of non-categorical general practice care include personal continuity and longitudinal support; accessibility; the ability to provide family support and appropriate information with reassurance and, the ability to deal with every day parental concerns. Specific medical tasks include treating intercurrent health problems and providing overall health monitoring. Health service functions include referral, co-ordination and monitoring of specialist and other services. 26

General practitioners are ideally placed for case management of families, both at time of psychosocial crisis for the family at the initial diagnosis, and during the 'long haul' when endurance and fortitude are often needed. This role may entail reinforcing and supplementing the detailed and precise information from specialists about the consequences of disease and the child's development. At later stages of the trajectory of deteriorating conditions, there are many important inputs, such as palliative care, that ideally suit the family orientation of the general practitioner. There is a paucity of literature about general practice management of chronic illness and non-categorical chronic disease in childhood. General practitioners need to further research and develop their understanding of illness management if they are going to realise their full potential in this area.

The current restructuring of the Australian health care system and chronic disease and illness management, with the introduction of co-ordinated and managed care should act as a potent stimulus to do this.(29) Trials of co-ordination funded by the co-ordinated care branch have placed general practice at the centre of chronic illness and disease management.(30) Major shifts in funding and care organisation are in the process of being evaluated. Pooling of health, social and psychological service costs will happen in phase 2 of the trials and out of the melting pot new models of service provision will emerge. There is considerable uncertainty about many aspects of these innovative approaches. These uncertainties include the role and responsibilities of general practitioners and other providers, such as social workers and community nurses and Home and Community Care professionals from many perspectives. However, it is the contention of this paper that if biopsychosocial care needs are to be comprehensively addressed in a truly integrated manner, there is an urgent need to identify needs in biopsychosocial domains and reappraise the roles and responsibilities of the general practitioners and other providers.


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29. Coordinated Care Branch, Dept of Health and Family Services Commonwealth Guidelines on the role of GPs in Coordinated Care Trials. 1996

30. Agreement between the Commonwealth Government and Coordinated Care Trial Sponsors. National Principles for the Coordinated Care Trials. 1996

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