Psychological Psychological Considerations Considerations

ininNutrition and GrowthNutrition and Growth

Medical conditions increase the Medical conditions increase the risk of feeding problems…risk of feeding problems…

Interruption of normal feeding Interruption of normal feeding History of physical discomfort during and History of physical discomfort during and

following eating (Mathisen et al., 1999)following eating (Mathisen et al., 1999) Effects development of self-efficacy, Effects development of self-efficacy,

tolerance for texture, oro-motor controltolerance for texture, oro-motor control Removes opportunities to develop Removes opportunities to develop

autonomy and negotiate dependence in autonomy and negotiate dependence in relation to caregiverrelation to caregiver

Fear Through Aversive Fear Through Aversive ExperiencesExperiences

Choking due to limited tongue and Choking due to limited tongue and jaw mobility, oesophageal stricturesjaw mobility, oesophageal strictures

Regurgitation and pain via refluxRegurgitation and pain via reflux Pain from trauma to skinPain from trauma to skin Bone and tooth painBone and tooth pain Unfamiliarity with texturesUnfamiliarity with textures

Iatrogenic ResistanceIatrogenic Resistance

Supplements/medicines taste badSupplements/medicines taste bad Unpleasant treatments eg n-g tubesUnpleasant treatments eg n-g tubes Complicated regimesComplicated regimes Appetite loss through treatment side-Appetite loss through treatment side-

effectseffects Hopelessness through repeated failuresHopelessness through repeated failures Reclaiming controlReclaiming control

Parental Disagreement with Parental Disagreement with Professional AdviceProfessional Advice

Different priorities Different priorities

(adaptive non-adherence)(adaptive non-adherence)

Trying but not believedTrying but not believed

Desire to maintain “normal” feedingDesire to maintain “normal” feeding

Consequences of Ongoing Consequences of Ongoing Feeding DifficultiesFeeding Difficulties

Chewing and swallowing difficultiesChewing and swallowing difficulties Loss of family routineLoss of family routine Unfavourable comparisons with Unfavourable comparisons with

siblings and other childrensiblings and other children Relationship between professionals Relationship between professionals

and familyand family Different rules and boundariesDifferent rules and boundaries

Consequences for parentsConsequences for parents

Parental guilt/failureParental guilt/failure Parental stressParental stress Parenting difficultiesParenting difficulties Loss of parenting confidenceLoss of parenting confidence

Consequences for patientConsequences for patient

Sense of differenceSense of difference Delays in growth and motor developmentDelays in growth and motor development MoodMood Appearance; small, thin, pre-pubertalAppearance; small, thin, pre-pubertal Physical ability; weak, lack of endurance, Physical ability; weak, lack of endurance,

sleepiness at schoolsleepiness at school

-> Low self esteem, low self-efficacy, poor -> Low self esteem, low self-efficacy, poor social integrationsocial integration Long term consequencesLong term consequences

Psychosocial Effect of Gastrostomy Psychosocial Effect of Gastrostomy Feeding in EBFeeding in EB

No studies in EBNo studies in EB Studies looking at other conditions :Studies looking at other conditions :

- carers’ feelings of inadequacy- carers’ feelings of inadequacy

- insufficient attention to carers’ - insufficient attention to carers’ psychosocial needspsychosocial needs

- and consequent poor compliance with the - and consequent poor compliance with the feeding regimenfeeding regimen

Pederson et al (2004), Enrione et al (2005)Pederson et al (2004), Enrione et al (2005)

Child Protection IssuesChild Protection Issues

Consent: Is child capable for making an Consent: Is child capable for making an informed decision?informed decision?

Neglect: “Failure of child to grow within normal Neglect: “Failure of child to grow within normal limits”limits”

Abuse: “Force feeding”Abuse: “Force feeding” “ “Deliberate failure to follow medically Deliberate failure to follow medically

recommended regimes”recommended regimes” “ “Misapplication of programmes/regimes”Misapplication of programmes/regimes”

Where does/should nutrition lie in the Where does/should nutrition lie in the list of priorities for care of severely-list of priorities for care of severely-affected children?affected children?

How hard should we push severely-How hard should we push severely-affected children (or adults) who don’t affected children (or adults) who don’t want to eat when life expectancy is want to eat when life expectancy is short regardless of what we do?short regardless of what we do?