Young People’s Response to Parental Neurological Disorder: A Structured Review

Figures & data

Figure 1 Data extraction form used for review process. Data from Razaz et al.²⁹

Table 1 Numbers of Records Retrieved, Excluded and Included Across All Conditions

Condition	Number of Records Retrieved from Initial Search	Number of Records Excluded Post Title-Screening Stage	Number of Full-Text Articles Assessed for Eligibility	Number of Articles Excluded	Number of Articles Retained
Dementia	473	436	37	25	12
Epilepsy	2313	2278	35	24	11
Headache	683	653	30	22	8
Neurological disorders associated with malnutrition	26	26	0	0	0
Multiple sclerosis	69	54	15	2	13
Neuroinfections	1585	1580	5	3	2
Pain associated with neurological disorders	104	100	4	4	0
Parkinson’s disease	67	54	13	10	3
Stroke	415	388	27	17	10
Traumatic brain injury	512	495	17	11	6
Total	6247	6064	183	118	65

Table 2 Articles Excluded at Full-Text Screening Stage

Condition	Number of Studies Excluded	Reasons for Exclusion (Number Excluded)
Dementia	25	Focus on caregivers (6)
		Children >24 years old (10)
		Focus on other family members’ responses (2)
		Focus on support service delivery (2)
		Many illnesses included (2)
		Could not access (not fully published) (2)
		No ages of children given (1)
Epilepsy	24	Focus on epileptic parent response, not children (2)
		Focus on AED effects only (8)
		More conditions investigated (1)
		Article unavailable due to age/not fully published (2)
		Review article of already included studies (1)
		Focus on childhood epilepsy (1)
Headache	22	Focus on child headache (12)
		Validation of questionnaire outcome measure (1)
		Focus on inheritance (6)
		Impact on spouse (1)
		Focus on child medication use (1)
		Focus on affected parent’s headache (1)
Neurological disorders associated with malnutrition	0
Multiple sclerosis	2	Study focus on child caregiving (2)
Neuroinfections	3	Not published in English (1)
		Focus on sponsorship, not child response (1)
		Responses of other family members (1)
Pain associated with neurological disorders	4	Focus on other conditions than those specified (3)
		Child pain (1)
Parkinson’s disease	10	Focus on caregivers (4)
		Validation of questionnaire outcome measure (1)
		Grey literature (conference abstracts) (3)
		Not published in English (1)
		Focus on inheritance (1)
Stroke	17	Child stroke (5)
		Focus on child caregiving (5)
		Validation of questionnaire outcome measure (1)
		Other conditions investigated (2)
		Focus on parenting (2)
		Focus on inheritance/risk factors (2)
Traumatic Brain Injury	11	Child TBI (1)
		Focus on parent response (3)
		Focus on stroke (included in stroke section) (1)
		Review of already included data (1)
		Response of other family members (4)
		Article not fully published (1)

Table 3 Overview of Results for All Included Studies

Condition^ref	Negative Child Responses	Positive/Neutral Child Responses	Other Responses
Dementia^Citation30^–^Citation41	- Significant general stress and emotional burden - Grief and loss very prominent as parents are ‘sliding away’ - Parent-child role reversal, including household responsibilities - 1/3 children experience mood disorders - Feelings of marginalisation - Significant life events/times of change most overwhelming, particularly moving out often leading to breakdown of family relationships - Feeling uncertain for the future	- Often employ positive coping mechanisms, such as detachment, by leaving home - Accessing support services perceived as self-empowering - Label of ‘dementia’ helpful in child disclosing the condition to others - Some families closer than before - Minority of young people exhibit high levels of resilience	- Social support services vitally important but often inadequate - Education about condition vital - Children often play large role in diagnosis such as noticing signs - Unhelpful to state parent is ‘still the same person’ as gives expectations children should feel the same way towards parent
Epilepsy^Citation42^–^Citation52	- Lower child IQ predicted by parental education, maternal IQ, anti-epileptic drug exposure - Low child IQ predicted by family/social risk factors (lack of discipline, stimulation or maternal involvement; low socioeconomic status) when child was also exposed to prenatal AED or parental seizures - Social risk factors increase long term cognitive adverse effects, including psycholinguistic abilities - High seizure rate associated with poor quality of upbringing - Increased child psychopathology risk where marital discord or disturbed parental behaviour occurs - Discord often causes neurotic disturbances, eg, tics/sleep problems - Problems with social functioning including at school - Fears include parental loss, developing epilepsy themselves - Poor development at 1 year continues at 6 years	- Acceptable levels of communication regarding epilepsy, satisfied with information received - Majority of children sufficiently socially adapted - Older children often develop independence from parent to cope	- Most children know about parental epilepsy before parent’s first seizure - Most poorly adjusted children have epilepsy concealed until they had witnessed first seizure - Children find communication easier than parents - Learning about epilepsy best when involving a medical professional, taking an individual approach to child concern
Headache^Citation53^–^Citation60	- Affected parents spend less time with their children and let them down - Children report reduced parental involvement in their education - Most negative experiences occur in children deprived of parental care - Poorer school attendance - Higher rates of abnormal internalising disorders, sadness, maladjustment, behavioural problems and delinquency - Younger children experience school difficulties - Older children experience adverse social relationships - Parent-child role reversal (eg, meal preparation), with higher rates of parental disability increasing this reversal - Maternal psychopathology negatively correlates with child self-esteem and quality of life - Greater burden seen in chronic migraine (vs. episodic)	- No significant effect on child psychological and family functioning - Majority (66%) of younger children react positively and 83% of older children are understanding, with only minority being hostile	- Family cohesion important; greater family cohesion associated with lower impact of headache on daily activities
Multiple Sclerosis^Citation61^–^Citation73	- Higher rates of mood/anxiety disorders - When co-exisiting parental psychopathology exists, there is increased risk of child mental health disorder, language and cognitive development vulnerability and child externalising disorders - Lower rate of child employment at age 30	- Little difference in educational outcomes, early childhood development and social adjustment outcomes compared to controls - Low risk of social vulnerability and peer relationship problems	- Family functioning essential for child adjustment - Children must be well-informed - Coping strategies involve maintaining control which increases life satisfaction - Children strive for a balance between parental care and realising their own goals
Neuroinfections (leprosy only)^Citation74,Citation75	- Higher rates of depression, lower self-esteem, inferior quality of life	- Experience of friends and school similar to controls - No significant behavioural changes
Parkinson’s Disease^Citation76^–^Citation78	- Parent-child role reversal - Inferior adjustment seen in children with no siblings - Increased rates of depression in affected children - Female children have lower self-esteem than male	- Providing sufficient information about Parkinson’s would improve child adjustment	- Impact of Parkinson’s increases with disease duration - Similar degree of well-being seen between children affected by parental PD and MS
Stroke^Citation79^–^Citation84	- Children may hide feelings of grief to protect the ill parent and parents may underestimate the child’s emotional stress - Increased behavioural problems, predicted by younger age - Negative reactions occur in minority; 16and 13% show externalising and internalising disorders respectively - 46% of children have post-traumatic stress symptoms - Female gender predictive of behaviour problems and increased stress - Depressive symptoms and cognitive disorder level of healthy parent increase child stress - Depression, living limitations and life satisfaction of ill parent also increase child stress - Aphasia in parent the ‘most dramatic loss’ - Child stress related to quality of parental relationship	- Most children experience little harm, good care, and do well - Children feel more needed and mature, have more responsibility - Improvement seen from 2–12 months post-stroke in internalising disorders, depression, and child health - Externalising disorders do not change over time - Healthy parent depressive symptoms improve over time	- Lack of communication endangers parent-child relationship - Increased levels of communication seen in larger, supportive families, families in which parent spends little time at home and families with low levels of healthy parent psychopathology - No correlation between parental disability and child adjustment - Marital relationship not related to child stress - Young age unrelated to child stress
Traumatic Brain Injury^Citation85^–^Citation94	- Increased risk of psychiatric disorders, particularly depression, and increased use of child psychiatric services - Males have increased risk of externalising disorders, females have increased risk of developmental psychiatric disorders - Increased behavioural problems - Children employ unhelpful coping strategies such as avoidance and suppression - Healthy parent stress associated with higher levels of post-traumatic stress and emotional and behavioural problems in child - Depression of healthy parent and affected parent’s gender associated with poor child behaviour	- Some children employ helpful coping strategies, eg, talking to peers - No significant behavioural differences when compared to peers	- Require more information/advice - No association between affected parent’s disability level and child well-being - Less parental emphasis on discipline - Affected parent lacks involvement in parenting - Reduced parenting performance correlates with poor behavioural outcomes

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