By:      Brenda SengerSpring 2013
RN 28 yearsNurse EducatorMother of 4 childrenMay 23, 20034 y/o daughterProbable Mitochondrial Disease
PhD program  Goal: identify stress and coping in parents of  children with Mito  Educate health care professionals  Provid...
Describe what is known about stress and copingwhen caring for a child with chronic illnessDescribe what is known about the...
Increased prevalenceLarger population of children with special needsMedical assistance is helping these childrengrow into ...
ComplexUnpredictable trajectory   Neurodegenerative disease can deteriorate either   within a short period of time or over...
Chronic Illness is a stressor for parents andchildrenRelationship between parent stress and childdistressThe higher the pa...
Parents of children with multiple and severechronic illness have more unmet needs thanchildren with a single chronic illne...
Medical care                 Financial burdensFinding a skilled provider   Insurance coverageFragmentation of care        ...
Visible Demands               Invisible Demands Medical care                   Worry Treatments                     Fear M...
NormalcyCertaintyInformationControl over stressorsPartnerships with health care providers
It is stressful to care for a child with a chronicillnessIt is a family affairIt is cross-culturalSuccessful management of...
Successful management of the childs illnessdepends on the ability of parent to copeDisease rareness, age of onset, loss of...
RareChildhood DiseaseInheritedChronic neurodegenerativeLife LimitingNo cureNo biological markerNo TreatmentVariety of clin...
Not a single chronic diseaseSpectrum of inherited disordersUnknown disease trajectoryUnknown prognosisNeurodegenerative di...
Uncertainty of diagnosis, prognosis or diseaseprogression in a complex health care settingPhysically, emotionally, financi...
Medical care   Office visits   Hospitalizations   Special medical equipment at home/school   Wheelchairs, developmental de...
WorryFearUncertainty of illness trajectoryVariability of symptomsDiagnosis or not?Public reaction to child’s disabilityHea...
Medical Science is taking lead roleFirst documented case in 1962Diagnosis is difficult   No biological marker   Muscle bio...
Gap in the number of studies done tounderstand needs of Mito parentsParents want information about:   symptoms, prognosis,...
Usually primary care giverMothers experience greater psychological strainMothers of children with Mito and PKU   Need of m...
Personality profiles of Mito mothersElevates scores in   Hypochondria,   Hysteria   Paranoia   Depression   AnxietyRelated...
Study from KoreaCompare moms of children with epilepsy &Mito  Higher caregiver burden  Lower quality of life  Greater depr...
Caring for a child with Mito is stressfulParents want information aboutdiagnosis, treatment, progression and genetictransm...
Risk for emotional distress and familydysfunctionUncertainty associated with MitoStress with uncertaintyMore research need...
Please take and complete this survey and  contribute to the growing body of knowledge  around the needs of parents caring ...
Brenda Senger RN, MA, PhD(c)Brenda.senger4@gmail.com
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Parent Experience of Stress and Coping When Caring for a Child With Mitochondrial Disease

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* Describe what is known about stress and coping when caring for a child with chronic illness
* Describe what is known about the needs of parents caring for a child with Mito
* Discuss the importance of identifying the specific needs of stress and coping for parents of children with Mito

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  • Parent Experience of Stress and Coping When Caring for a Child With Mitochondrial Disease

    1. 1. By: Brenda SengerSpring 2013
    2. 2. RN 28 yearsNurse EducatorMother of 4 childrenMay 23, 20034 y/o daughterProbable Mitochondrial Disease
    3. 3. PhD program Goal: identify stress and coping in parents of children with Mito Educate health care professionals Provide support to parents of children with MitoTake this surveyhttps://wsunursing.qualtrics.com/SE/?SID=SV_cOnqRUyfTTHO5a5
    4. 4. Describe what is known about stress and copingwhen caring for a child with chronic illnessDescribe what is known about the needs ofparents caring for a child with MitoDiscuss the importance of identifying thespecific needs of stress and coping for parentsof children with Mito
    5. 5. Increased prevalenceLarger population of children with special needsMedical assistance is helping these childrengrow into adulthood with increased functioningand better quality of life
    6. 6. ComplexUnpredictable trajectory Neurodegenerative disease can deteriorate either within a short period of time or over many years.Challenges can be overwhelming: Physical, emotional, financial, social, spiritual Anxiety, stress, and uncertainty
    7. 7. Chronic Illness is a stressor for parents andchildrenRelationship between parent stress and childdistressThe higher the parental stress the greater thelevel of distress in the childParental maladjustment depends on length ofillness, functional impairment, severity of illness
    8. 8. Parents of children with multiple and severechronic illness have more unmet needs thanchildren with a single chronic illnessUnmet needs are proportionate to the severityand complexity of the child’s illness.Mito is complex affecting many body systems
    9. 9. Medical care Financial burdensFinding a skilled provider Insurance coverageFragmentation of care Activities of Daily LivingGetting referrals Coordinating with schoolsTravel for medical and other organizationsappointmentsOrganizing home healthcare
    10. 10. Visible Demands Invisible Demands Medical care Worry Treatments Fear Monitoring symptoms Uncertainty Physical demands Future for their child Activities of daily living Public reaction to disability Developmental delay Tolerance Impaired social skills Stigmatization School needs
    11. 11. NormalcyCertaintyInformationControl over stressorsPartnerships with health care providers
    12. 12. It is stressful to care for a child with a chronicillnessIt is a family affairIt is cross-culturalSuccessful management of illness is dependenton ability of parent to copeCoping is influenced by ability to resolveuncertainty in illness
    13. 13. Successful management of the childs illnessdepends on the ability of parent to copeDisease rareness, age of onset, loss offunction, impact on mobility, course ofillness, cognitive function, ability tocommunicate, visibility of illnessEmotional support and positive copinginfluenced psychosocial adjustment of parents
    14. 14. RareChildhood DiseaseInheritedChronic neurodegenerativeLife LimitingNo cureNo biological markerNo TreatmentVariety of clinical symptoms
    15. 15. Not a single chronic diseaseSpectrum of inherited disordersUnknown disease trajectoryUnknown prognosisNeurodegenerative disease may look well atdiagnosis, but deteriorate slowly or within ashort period of time.
    16. 16. Uncertainty of diagnosis, prognosis or diseaseprogression in a complex health care settingPhysically, emotionally, financially, socially andspirituallyExpansion of Parent role Medical experts Care coordinators Advocates Teachers
    17. 17. Medical care Office visits Hospitalizations Special medical equipment at home/school Wheelchairs, developmental delays, g-tubes, vision problemsPhysical care of the childCoordinating care with social services and theeducational system
    18. 18. WorryFearUncertainty of illness trajectoryVariability of symptomsDiagnosis or not?Public reaction to child’s disabilityHealth care providers understanding needsDevelopmental lags of the child
    19. 19. Medical Science is taking lead roleFirst documented case in 1962Diagnosis is difficult No biological marker Muscle biopsy Genetic sequencing Definite, Probable, Possible or UnlikelyTreatment depends on symptoms Mito cocktail
    20. 20. Gap in the number of studies done tounderstand needs of Mito parentsParents want information about: symptoms, prognosis, life expectancy, genetics, coping, and support. Health professionals lack information to give to parents
    21. 21. Usually primary care giverMothers experience greater psychological strainMothers of children with Mito and PKU Need of more health care services More specialists More hospitalizations More financial burden Out pocket expenses Number of work days missed More stress, strain and worry,
    22. 22. Personality profiles of Mito mothersElevates scores in Hypochondria, Hysteria Paranoia Depression AnxietyRelated to stress of uncertainty, and caregivingdemands
    23. 23. Study from KoreaCompare moms of children with epilepsy &Mito Higher caregiver burden Lower quality of life Greater depression and anxiety Guilt with maternal inheritance
    24. 24. Caring for a child with Mito is stressfulParents want information aboutdiagnosis, treatment, progression and genetictransmissionControl over childs health careSupport from family and friends predict qualityof lifeReliance on health care providers
    25. 25. Risk for emotional distress and familydysfunctionUncertainty associated with MitoStress with uncertaintyMore research neededParents want information, coaching, validationand competent health care providers
    26. 26. Please take and complete this survey and contribute to the growing body of knowledge around the needs of parents caring for a child with Mitochondrial disease. Mitochondrial Disease Parent Surveyhttps://wsunursing.qualtrics.com/SE/?SID=SV_cOnqRUyfTTHO5a5
    27. 27. Brenda Senger RN, MA, PhD(c)Brenda.senger4@gmail.com

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