Edited by Leena Dev, MD, FAAP CHILD NEGLECT

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1 Edited by Leena Dev, MD, FAAP CHILD NEGLECT

2 Objectives Define child neglect. Know incidence and prevalence of child neglect. Discuss the various types, etiologies, and manifestations of child neglect. Understand failure to thrive, its workup and association with child neglect. Understand medical neglect. Cases.

3 Definitions A condition in which a child s basic needs are not met, regardless of cause (Helfer, Dubowitz). Acts of omissions by those responsible for the child s health or well being. Clear and identifiable harm or injury is the legal context for definition. Potential harm or risk can also play a role in degree of suspicion.

4 Failure to Meet a Child s Need Food Clothing Shelter Health care Education (this varies per state) Supervision, safekeeping, protection Nurturance

5 Incidence and Prevalence 64.1% of 885,245 substantiated cases of child maltreatment were due to neglect (2006). Add 12% more for psychological abuse and medical neglect = 75%. Physical neglect is most common form of child maltreatment. Almost 1/3 of child fatalities caused by child maltreatment are due to neglect. Rate: 7.7 per 1,000 children.

6 2006 Statistics Child Maltreatment United States 885,245 victims 567,787 neglect (64.1%) 142,041 physical abuse (16.0%) 19,180 medical neglect (2.2%) 78,120 sexual abuse (8.8%)

7 Etiology Parental Characteristics Maternal depression Maternal drug use during pregnancy Parental abilities to cope with stressors

8 Etiology Child Characteristics Temperamentally difficult children Requiring a lot of attention Tend to be annoying to parent Real vs parental perception Chronically disabled children Low birth weight or prematurity Multiple medical problems

9 Etiology Family Characteristics Attachment disorders Unrealistic expectations by parents Chaotic families with impulsive mothers Social isolation Stress (eg, illness, unemployment, eviction, arrest)

10 Etiology Community and Social Characteristics Low availability of social service agencies Few support systems available Inadequate educational systems The most pervasive influence: poverty

11 Manifestations of Neglect Physical Neglect 1. Inappropriate nutrition, clothing, hygiene 2. Refusal or delay of health care 3. Abandonment, leaving child alone 4. Inadequate supervision

12 Manifestations Inadequate supervision may lead to Drowning Poisoning House fires Accidents (eg, absent seat belts, smoke alarms, safe equipment, stair gates) Exposure to guns, Exposure to domestic violence

13 Types of Neglect Physical environment Environmental hazards Inadequate standards of care Developmental neglect

14 Physical Environment Inadequate shelter Inadequate sleeping arrangements Unsanitary conditions Structural hazards Housekeeping problems

15 Physical Environment Inadequate shelter Overcrowded with People Furnishings Trash Garbage

16 Physical Environment Inadequate sleeping arrangements Child does not get adequate sleep. Child appears fatigued. Need for sleep is not met. Excess people Excess noise Children sleeping with adults. Inadequate bedding. Soiled Not warm enough

17 Physical Environment Unsanitary conditions Accumulation of garbage/trash Unusable toilets Human/animal feces on floor Uncontrolled vermin Food preparation unhealthy

18 Physical Environment Structural hazards House partially collapsed Stairs/railings broken Windows/doors poor conditions Floors/ceiling w/holes Floors w/splinters

19 Physical Environment Housekeeping problems Dirt/filth Clutter/trash Over long period

20 Environmental Hazards Fire hazards Substance accessibility and use Leaving child in car unattended Excessive hot water temperature

21 Environmental Hazards Fire hazards Exposed/frayed wiring Fuel containers Beds too close to heat sources Impede evacuations w/metal bars on windows

22 Environmental Hazards Substance abuse Chemicals or drugs within reach or easily accessible Hot water Greater than 120 F

23 Inadequate Care Standards Nutrition Clothing Personal hygiene Health care Supervision

24 Inadequate Care Standards Nutrition Poor quality food. Lacking in nutritional value. Diet w/o 4 basic food groups. No variety. Lack of meal planning. Haphazard meal planning. Often no adult caregiver planning meals consistently. Food may be inappropriate for child s age or developmental level. Spoiled food. No food available. Inappropriately young child must prepare own food. Mealtime w/chaos.

25 Inadequate Care Standards Clothing Inadequate Inappropriate Dirty/filthy Ill fitting Tattered/torn Footwear inadequate Too large/small

26 Inadequate Care Standards Personal hygiene Not bathed for lengthy period Smelling of urine/feces/sweat Covered/crusted w/dirt Hair unkempt Poor dental hygiene (caries) Mouth odor Persistent presence of lice or pyoderma

27 Inadequate Care Standards Supervision Lack of supervision can lead to injuries that could have been avoided.

28 Inadequate Care Standards Health care Basic health care not obtained Lacks immunization Overuse of ED services Or no use of MD at all even w/severe illness Prescription unfilled Caries untreated Chronic illness recommendations not followed Poor compliance with recommendations Prescribed psychiatric help not obtained Failure to allow medication for serious illness

29 Emotional Neglect Inadequate or inconsistent nurturance or affection Witness to chronic spousal abuse Permitted substance abuse Permitted maladaptive behaviors (eg, school absence, delinquency) Refusal or delay of mental health care Isolation/imprisonment

30 Educational Neglect Failure to provide education as prescribed by law Note: In some states in the United States educational neglect/truancy is not covered under children s protective services.

31 Other Considerations Is there actual or potential harm? What is the severity of harm or risk? What is the frequency or chronicity of the neglect? Is there a pattern of omission of care?

32 Making the Diagnosis Inappropriate Nutrition Obesity Extreme obesity can produce Cardiovascular morbidity Hypertension Diabetes Psychosocial problems Teasing/bullying Ostracism Premature mortality

33 Failure to Thrive (FTT) Definition A condition in which a child s growth deviates from the norms for the child s age and sex. Proximate cause is malnutrition. Primary malnutrition Secondary malnutrition

34 FTT Familial Factors Consanguinity rare genetic disorders Developmental delay Familial diseases Cystic fibrosis Lactose deficiency Parental short stature Psychosocial factors Mental illness Substance abuse Eating disorders Developmental impairment

35 FTT Perinatal Factors Prematurity or low birth weight Intrauterine growth retardation Prenatal exposure to drugs Sexually transmitted infections Exposure to maternal infections in utero TORCH

36 FTT Postnatal Medical Factors Childhood illnesses Infections Gastrointestinal diseases Malabsorptive states Parasitic infections Renal Renal tubular acidosis Urinary tract infections Cardiac malformations

37 FTT Childhood illnesses (continued) Dental neglect Caries Gum diseases Enlarged tonsils Recurring infections Otitis Sinusitis HIV Lead poisoning

38 Medical Management of FTT Longitudinal, ongoing care Nutritional evaluation and treatment Anthropometric assessment Social assessment Psychologic assessment Appropriate referrals to specialists

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47 FTT Measurements Weight for age measurement. Powerful tool for predicting mortality reflecting both current and past insults. Reduced height for age. Reflects cumulative effects. Reduced weight for height. Reflects acute deprivation. Combination of height for age and weight for height reflects highest risk.

48 FTT Psychological Assessment Intellectual assessment cognitive Social and affective responsiveness Home Observation for Measurement of the Environment (HOME) Inventory

49 Disposition Multidisciplinary team. Family must be willing and able. Monitoring and compliance essential. If placement is necessary Foster parents must be engaged fully in treatment regimen.

50 Medical Neglect Non adherence to medical recommendations Delay or failure in seeking medical care Refusal to allow health care Mistrust of medical care system Religious or cultural attitudes

51 Etiology of Medical Neglect No single cause Multiple and interacting factors at many levels Individual (parent and child) Mental illness/substance abuse Side effects Prophylaxis Familial Financial Community/neighborhood Societal Educational (parents understanding of illness)

52 Etiology of Medical Neglect Factors Contributing to Medical Neglect Stress Time Education Expense Emotional turmoil Guilt, shame, fear, resentment. Emotional abuse by caregivers can cause children to neglect their self care regimens or indulge in self destructive behavior. Parental indifference child neglects own care in an effort to win attention and love.

53 Manifestations of Medical Neglect Noncompliance (non adherence) with health care recommendations Delay or failure in getting health care Acute Chronic Missed appointments Refusal of medical treatment

54 Medical Neglect: Delay or Failure in Getting Health Care Child s health care needs are not met, resulting in actual or probable significant harm. Caregiver s responsible for recognizing health problems and seeking necessary health care in a timely manner. A problem that a parent or average layperson can reasonably be expected to recognize Was the delay in care significant?

55 Delay/Failure in Getting Health Care Multiple and interacting reasons why care is not sought or received. Maternal factors Family factors Community factors Despite these reasons, this still constitutes medical neglect. Identifying contributory factors crucial for planning intervention

56 Refusal of Medical Treatment Based on caregivers belief that an alternative treatment is preferable. Grey zone where side effects become greater than the likely gain of treatment. Prescribed approach is prohibited by their religion. Wide spectrum.

57 Medical Neglect Neglected children often have poor health. Repeated lung, skin, GI infections. Infestations with Lice Scabies Medical neglect may make it difficult to treat common problems. Asthma

58 Medical Neglect Children with chronic conditions require more careful management and are at greater risk for medical neglect. Diabetes/endocrine disorders Cancers Cystic fibrosis/pulmonary conditions Transplant/transplant candidates Cardiac conditions GI conditions Premature infants with disabilities Behavioral problems

59 Challenges in Medical Neglect Cases Parents refusing medical care on the basis of religious beliefs Parents argue that state enforced medical care violates religious freedom. Judges often have to intervene if parental religious beliefs stand as barrier to essential medical care. Sometimes questions arise such as When is the child competent to refuse care?

60 Religious Preference or Medical Neglect? A 16 year old diabetic adolescent died as a result of complications of untreated diabetes. The child developed gangrene and the parents chose to use herbal medications. The child s parents religious sect relies on faith healing, thus the parents refused to seek medical care for their daughter.

61 Religious Exemptions Forty six states have religious exemptions from their child abuse statutes. Based largely on the arguments of various religious groups that the US Constitution guarantees the protection of religious practice.

62 AAP View The opportunity to grow and develop safe from physical harm with the protection of our society is a fundamental right of every child. The basic moral principles of justice and of protection of children as vulnerable citizens require that all parents and caregivers must be treated equally by the laws and regulations that have been enacted by state and federal governments to protect children.

63 Challenges in Medical Neglect Cases Medical treatment needed to save a child s life Judges have ordered lifesaving medical care over a parental objection. Treatment not essential to save a child s life Judges reach different results.

64 Challenges in Medical Neglect Cases Considerations Problem: condition progressive vs stable Treatment: well accepted vs experimental Likelihood of success Risk vs benefit Will treatment provide a meaningful life Child s wishes (if age appropriate)

65 Case Example 6 year old was diagnosed with a spinal cord tumor. This could be treated by radiation and intra thecal chemotherapy. Child needed to be sedated for an MRI to see exact location of the tumor. Mother and grandmother refused the sedation. Both mother and grandmother are very religious. They said God would take care of her and if she was meant to be paralyzed that was God s will. Mother wanted to allow child to make her own decision.

66 Case Example Child was thus unable to get the chemo or radiation as complete evaluation was not possible. Neurosurgeons and neurology needed to have MRI. MRI needed to be performed ASAP as child could be paralyzed any moment. Mother and grandmother met with oncologists, neurologists, neurosurgeons, with child protection team on standby to call PS and hospital attorneys. Mother finally agreed to treatment.

67 Another Example 13 year old diabetic female diagnosed at age 6 years. Admitted to multiple hospitals for severely elevated blood sugars resulting in diabetic ketoacidosis over the past year. Admitted to PICU 6 times in the past 5 months. Has had to be intubated all 6 times. Mother says child is old enough to give herself her insulin and will not let mother do it. Physicians feel it is mother s responsibility to give the child the medication and she is noncompliant with medical recommendations.

68 Asthmatic Case Example 4 year old child with severe asthma. Repeated ED and clinic visits for asthma exacerbations. Parents have been repeatedly recommended to remove cat from home and to smoke outside/quit smoking. Cat removed from child s room, but not the house. Child continues to have multiple episodes of asthma exacerbations and 2 recent PICU admissions.

69 Who Is Responsible? Parents/guardians primarily responsible for the care of the child Contributory roles of professionals, the community, and society

70 The Doctor s Fault?? Physicians may unknowingly contribute to medical neglect. Many parents rely on health care providers to explain a child s condition and to plan for treatment. Is it possible the health care provider is not informing the parents to their comprehension?

71 Are These Cases of Neglect? 1. 2 year old missing last 2 sets of shots year old severe asthmatic failed to receive needed medications year old with terminal cancer parents refuse further experimental treatment. 4. Father leaves 1 year old in tub.

72 Are These Cases of Neglect? 5. 8 year old recurrent UTI not receiving prophylactic antibiotics costs. 6. Chiropractor refuses immunizations year old leukemic refused traditional chemotherapy, uses laetrile, child dies. 8. Sequestered children.

73 Are These Cases of Neglect? 9. 6 month old with over diluted formula and FTT. Child doing great according to father year old enuretic mother thought only solution was to withhold liquids after 6:00 pm week old Vietnamese infant with vomiting and fever. Evidence of coining.

74 Are These Cases of Neglect? year old in diabetic coma no insurance year old, 1 week of untreated cellulitis of leg now is infected year old depressed mother refuses psychological counseling doesn t believe in that stuff.

75 Are These Cases of Neglect? Religious beliefs Jehovah s Witnesses don t allow blood transfusions. Christian Scientists: 172 child fatalities because of withholding of standard medical care. Larger morbidity due to religious beliefs.

76 Questions to Ask in Medical Neglect Cases 1. Is there risk resulting from inaction? 2. Is there harm resulting from inaction? 3. Why did parents not seek care or comply? 4. How did system engage parents? 5. Potential benefits of care?

77 Questions to Ask in Medical Neglect Cases 6. Potential risks of care? 7. Expected outcome without care? (Parents) 8. Expected outcome by providers? 9. Parents aware of providers expectations? 10. Outcome related to absent care?

78 Inadequate Supervision Case Example

79 Ingestion of Unknown Substance 21 month old vomiting, dysphagia, drooling. Party previous night; overslept. Awoke to find baby drinking from cup. Child screamed, taken to ED. PE swollen, red lips, mouth, pharynx. Endo burns mouth, throat, larynx, trachea.

80 Ingestion of Unknown Substance Esophageal strictures, gastrostomy done Colonic transplant to replace esophagus Contents of cup strong base Child s urine positive for cocaine Cup contained alkali for freebasing cocaine

81 Principles of Intervention Diagnosis of neglect Immediacy of future harm Understanding of all elements in the neglect Interdisciplinary approach

82 Intervention Maternal health problems addressed. Target contributory factors. Use family s natural and informal supports. Use cultural navigators to understand various cultural beliefs. Least intrusive approach. Enlist child protective services. Identify and seek community services/financial supports. Make clear to all what the goals are. Home health visitors.

83 Intervention INTERVENTION IS LONG TERM. Tracking cases is essential to long term success.

84 In Conclusion Neglect is the most common form of child abuse in the United States. There are a number of maternal, child, social, and environmental factors that can contribute to child neglect. FTT cases can sometimes have components of child neglect. Remember the solution to cases of neglect is long term.

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