‘Happiness, therefore, is the best, noblest, and most pleasant thing …’ (Bartlett & Collins, Reference Aristotle, Bartlett and Collins2011, p. 161) For people who also have cerebral palsy (CP) or spina bifida (SB), the pursuit of happiness is just as important as it is for people with no motor disability (Gannotti, Blanchard, Blumberg, & LaRocco, Reference Gannotti, Blanchard, Blumberg and LaRocco2019a).
Peterson et al. (Reference Peterson, Lin, Kamdar, Mahmoudi, Marsack-Topolewski, Haapala and Muraszko2020) provide conclusive evidence that risk for adults with CP or SB of longitudinal psychological morbidity is higher than age-matched controls. Given the importance of psychological well-being for all (Bartlett & Collins, Reference Aristotle, Bartlett and Collins2011), the mental health needs of adults with CP or SB are compelling. Addressing these needs is imperative, as the number of adults with CP or SB will continue to grow and already is larger than the number of children with CP or SB (U.S. Census Bureau, 2012).
The Peterson et al. (Reference Peterson, Lin, Kamdar, Mahmoudi, Marsack-Topolewski, Haapala and Muraszko2020) longitudinal analysis confirms a previous report about higher risk within a cross-sectional sample (Whitney, Warschausky, & Peterson, Reference Whitney, Warschausky and Peterson2019). Adults with CP or SB or severe disability have provided reports of high quality of life, life satisfaction, and happiness (Albrecht & Devlieger, Reference Albrecht and Devlieger1999; Gannotti et al., Reference Gannotti, Blanchard, Blumberg and LaRocco2019a; Hergenroder & Blank, Reference Hergenroder and Blank2009); yet, these reports are not from large population-based samples. Peterson et al. (Reference Peterson, Lin, Kamdar, Mahmoudi, Marsack-Topolewski, Haapala and Muraszko2020) identified hazard ratios ranging from 1.32 to 4.12 for impulse control, delirium/dementia/amnestic/other cognitive disorders, personality disorders, central pain, mood disorders, post-traumatic stress syndrome (PTSD), and insomnia for adults with CP or SB as compared to those without. This is very strong evidence that disparities in psychological outcomes exist.
To what degree is the increased risk for psychological comorbidities a result of the original brain injury or central nervous system malformation? How much of these psychoses/dementias could have been precipitated by the environment? How much is linked to genetic or epigenetic etiologies? Why is there an increased risk of dementia? Who in particular with CP or SB is at most risk? Similarly, the hazards ratio for central pain was 1.88; central pain by definition is a result of central nervous system damage (National Institutes of Health, 2020). What are the biological characteristics of adults with CP or SB who have central pain v. those who do not? Mood disorders, PTSD, and insomnia have reported hazard ratios of 1.72–1.5 (Peterson et al., Reference Peterson, Lin, Kamdar, Mahmoudi, Marsack-Topolewski, Haapala and Muraszko2020). Why is the risk of PTSD so high? Are there common experiences that can be identified? What are some preventive measures that can be taken to improve the mood and prevent insomnia? These are questions that have not yet been explored. The work by Peterson et al. (Reference Peterson, Lin, Kamdar, Mahmoudi, Marsack-Topolewski, Haapala and Muraszko2020) also brings to light the need for knowledge and solutions.
Adults with CP often speak of how they felt care during childhood was ‘dehumanizing’ and the goal was to make them ‘normal’ (Gannotti et al., Reference Gannotti, Blanchard, Blumberg and LaRocco2019a; Gannotti, Wilson, Bagley, & Oeffinger, Reference Gannotti, Wilson, Bagley and Oeffinger2019b). Adults with CP or SB may feel they ‘failed’ in the eyes of health care professionals because they are not ‘normal’ or ‘cured’ (Gannotti et al., Reference Gannotti, Blanchard, Blumberg and LaRocco2019a, Reference Gannotti, Wilson, Bagley and Oeffingerb). Is this internalized sense of failure a contributing factor to the higher risk of anxiety, mood disorders, insomnia, central pain, and PTSD? Self-efficacy is something all individuals should develop during childhood and young adulthood (Werner & Smith, Reference Werner and Smith1989), and perhaps building self-efficacy and sustaining self-efficacy in adulthood is a treatment pathway.
Differences from peers among individuals with CP and SB become more apparent during adolescence, a time of prefrontal lobe growth and high risk for psychological disorders. Enter into adulthood, comprehensive educational and medical/rehabilitation services are no longer available, paid caregiving is expensive and unreliable, and finding employment is competitive. Adults with CP or SB, regardless of the level of physical disability, face significant challenges in negotiating daily life in terms of self-care, social stigma, and environmental barriers. Even adults with the mildest form of CP or SB may experience issues with incontinence, which can be socially devastating. Adults with CP or SB who ambulate may feel worse about their body than those who are more physically disabled, as they are trying to ‘pass’ (Gannotti et al., Reference Gannotti, Blanchard, Blumberg and LaRocco2019a; Gannotti, Minter, Chambers, Smith, & Tylkowski, Reference Gannotti, Minter, Chambers, Smith and Tylkowski2011). Adults with CP or SB often do not have the buffer of family members or dedicated caregivers for emotional or physical support that children do. Constant frustration, anxiety, and fear around medical issues need for caregiver support, and inability to obtain the necessary equipment is difficult for any individual. Small daily issues may trigger negative emotions, anxiety, insomnia, bad moods, or PTSD, given past struggles. Again, Peterson et al. (Reference Peterson, Lin, Kamdar, Mahmoudi, Marsack-Topolewski, Haapala and Muraszko2020) confirmed the hypothesis that adults with CP and SB do have increased risk for psychological morbidity.
The field of psychological medicine needs to be aware of the compelling psychological needs of adults living with CP or SB. Research efforts need to include biological studies to provide more information on how early brain injury or malformation can increase the risk of specific psychological disorders. Biologic agents and treatments should be explored for targeting brain structures for mood and self-regulation. Studies that investigate individual–environment interaction are also of the utmost importance. Understanding how specific environmental features may trigger individuals with specific brain lesions or patterns of mood regulation would be of use. Interventional research that evaluates different types of treatments to assist adults with CP or SB to cope, manage, and alleviate the different symptoms is needed.
Clinicians, stakeholders, scientists, and consumers should be alarmed by the findings of this report to strongly advocate for the psychological needs of adults with CP or SB. In the ‘nature v. nurture’ debate, the environment for adults with CP and SB could provide more nurturing structures and opportunities for social participation. Reduced social stigma, improved architectural barriers, and access to regular physical activity are ways we can promote a more nurturing environment to promote well-being. Psychologists are urged to be sensitive and aware of the needs of adults with CP or SB. The Peterson et al. (Reference Peterson, Lin, Kamdar, Mahmoudi, Marsack-Topolewski, Haapala and Muraszko2020) findings have conclusively identified the issue, and now we look towards new ideas and programs to assist adults with CP or SB.
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‘Happiness, therefore, is the best, noblest, and most pleasant thing …’ (Bartlett & Collins, Reference Aristotle, Bartlett and Collins2011, p. 161) For people who also have cerebral palsy (CP) or spina bifida (SB), the pursuit of happiness is just as important as it is for people with no motor disability (Gannotti, Blanchard, Blumberg, & LaRocco, Reference Gannotti, Blanchard, Blumberg and LaRocco2019a).
Peterson et al. (Reference Peterson, Lin, Kamdar, Mahmoudi, Marsack-Topolewski, Haapala and Muraszko2020) provide conclusive evidence that risk for adults with CP or SB of longitudinal psychological morbidity is higher than age-matched controls. Given the importance of psychological well-being for all (Bartlett & Collins, Reference Aristotle, Bartlett and Collins2011), the mental health needs of adults with CP or SB are compelling. Addressing these needs is imperative, as the number of adults with CP or SB will continue to grow and already is larger than the number of children with CP or SB (U.S. Census Bureau, 2012).
The Peterson et al. (Reference Peterson, Lin, Kamdar, Mahmoudi, Marsack-Topolewski, Haapala and Muraszko2020) longitudinal analysis confirms a previous report about higher risk within a cross-sectional sample (Whitney, Warschausky, & Peterson, Reference Whitney, Warschausky and Peterson2019). Adults with CP or SB or severe disability have provided reports of high quality of life, life satisfaction, and happiness (Albrecht & Devlieger, Reference Albrecht and Devlieger1999; Gannotti et al., Reference Gannotti, Blanchard, Blumberg and LaRocco2019a; Hergenroder & Blank, Reference Hergenroder and Blank2009); yet, these reports are not from large population-based samples. Peterson et al. (Reference Peterson, Lin, Kamdar, Mahmoudi, Marsack-Topolewski, Haapala and Muraszko2020) identified hazard ratios ranging from 1.32 to 4.12 for impulse control, delirium/dementia/amnestic/other cognitive disorders, personality disorders, central pain, mood disorders, post-traumatic stress syndrome (PTSD), and insomnia for adults with CP or SB as compared to those without. This is very strong evidence that disparities in psychological outcomes exist.
To what degree is the increased risk for psychological comorbidities a result of the original brain injury or central nervous system malformation? How much of these psychoses/dementias could have been precipitated by the environment? How much is linked to genetic or epigenetic etiologies? Why is there an increased risk of dementia? Who in particular with CP or SB is at most risk? Similarly, the hazards ratio for central pain was 1.88; central pain by definition is a result of central nervous system damage (National Institutes of Health, 2020). What are the biological characteristics of adults with CP or SB who have central pain v. those who do not? Mood disorders, PTSD, and insomnia have reported hazard ratios of 1.72–1.5 (Peterson et al., Reference Peterson, Lin, Kamdar, Mahmoudi, Marsack-Topolewski, Haapala and Muraszko2020). Why is the risk of PTSD so high? Are there common experiences that can be identified? What are some preventive measures that can be taken to improve the mood and prevent insomnia? These are questions that have not yet been explored. The work by Peterson et al. (Reference Peterson, Lin, Kamdar, Mahmoudi, Marsack-Topolewski, Haapala and Muraszko2020) also brings to light the need for knowledge and solutions.
Adults with CP often speak of how they felt care during childhood was ‘dehumanizing’ and the goal was to make them ‘normal’ (Gannotti et al., Reference Gannotti, Blanchard, Blumberg and LaRocco2019a; Gannotti, Wilson, Bagley, & Oeffinger, Reference Gannotti, Wilson, Bagley and Oeffinger2019b). Adults with CP or SB may feel they ‘failed’ in the eyes of health care professionals because they are not ‘normal’ or ‘cured’ (Gannotti et al., Reference Gannotti, Blanchard, Blumberg and LaRocco2019a, Reference Gannotti, Wilson, Bagley and Oeffingerb). Is this internalized sense of failure a contributing factor to the higher risk of anxiety, mood disorders, insomnia, central pain, and PTSD? Self-efficacy is something all individuals should develop during childhood and young adulthood (Werner & Smith, Reference Werner and Smith1989), and perhaps building self-efficacy and sustaining self-efficacy in adulthood is a treatment pathway.
Differences from peers among individuals with CP and SB become more apparent during adolescence, a time of prefrontal lobe growth and high risk for psychological disorders. Enter into adulthood, comprehensive educational and medical/rehabilitation services are no longer available, paid caregiving is expensive and unreliable, and finding employment is competitive. Adults with CP or SB, regardless of the level of physical disability, face significant challenges in negotiating daily life in terms of self-care, social stigma, and environmental barriers. Even adults with the mildest form of CP or SB may experience issues with incontinence, which can be socially devastating. Adults with CP or SB who ambulate may feel worse about their body than those who are more physically disabled, as they are trying to ‘pass’ (Gannotti et al., Reference Gannotti, Blanchard, Blumberg and LaRocco2019a; Gannotti, Minter, Chambers, Smith, & Tylkowski, Reference Gannotti, Minter, Chambers, Smith and Tylkowski2011). Adults with CP or SB often do not have the buffer of family members or dedicated caregivers for emotional or physical support that children do. Constant frustration, anxiety, and fear around medical issues need for caregiver support, and inability to obtain the necessary equipment is difficult for any individual. Small daily issues may trigger negative emotions, anxiety, insomnia, bad moods, or PTSD, given past struggles. Again, Peterson et al. (Reference Peterson, Lin, Kamdar, Mahmoudi, Marsack-Topolewski, Haapala and Muraszko2020) confirmed the hypothesis that adults with CP and SB do have increased risk for psychological morbidity.
The field of psychological medicine needs to be aware of the compelling psychological needs of adults living with CP or SB. Research efforts need to include biological studies to provide more information on how early brain injury or malformation can increase the risk of specific psychological disorders. Biologic agents and treatments should be explored for targeting brain structures for mood and self-regulation. Studies that investigate individual–environment interaction are also of the utmost importance. Understanding how specific environmental features may trigger individuals with specific brain lesions or patterns of mood regulation would be of use. Interventional research that evaluates different types of treatments to assist adults with CP or SB to cope, manage, and alleviate the different symptoms is needed.
Clinicians, stakeholders, scientists, and consumers should be alarmed by the findings of this report to strongly advocate for the psychological needs of adults with CP or SB. In the ‘nature v. nurture’ debate, the environment for adults with CP and SB could provide more nurturing structures and opportunities for social participation. Reduced social stigma, improved architectural barriers, and access to regular physical activity are ways we can promote a more nurturing environment to promote well-being. Psychologists are urged to be sensitive and aware of the needs of adults with CP or SB. The Peterson et al. (Reference Peterson, Lin, Kamdar, Mahmoudi, Marsack-Topolewski, Haapala and Muraszko2020) findings have conclusively identified the issue, and now we look towards new ideas and programs to assist adults with CP or SB.
Conflict of interest
None.