Predictors of uncertainty in parents of children living with chronic conditions.

BACKGROUND Uncertainty in illness implies no meaning has been attributed to an illness event. Although many studies focus on this issue in adults, there is limited research into children with chronic illnesses. Parental uncertainty has been associated with increased risk of post-traumatic stress, which can in turn adversely affect child and parent coping strategies. AIM To identify the characteristics of parents who are at greater risk of uncertainty and the associated characteristics of their children's chronic illnesses. METHOD An exploratory, cross-sectional study design was adopted across three different sites in the United Arab Emirates. Data were collected from parents who accompanied their children, who were receiving treatment, using a validated, culturally adapted Parent Perception of Uncertainty Scale. RESULTS Scores for illness uncertainty ranged from 86.5 to 92.6, on a scale of 31-155, with higher scores indicating greater uncertainty. The highest scores were found in parents of children being cared for in ward settings who had previously been hospitalised, parents of children up to two years of age or those approaching adolescence, fathers, and parents whose first language was Arabic. CONCLUSION The groups of parents with the highest illness uncertainty may benefit most from interventions to improve communication and psychological support.

[1]  Alaa-Aldin A. Ahmad,et al.  The quality of information received by parents of children with chronic ill health attending hospitals as indicated by measures of illness uncertainty , 2017, Scandinavian journal of caring sciences.

[2]  R. Gilbert,et al.  Chronic conditions in children and young people: learning from administrative data , 2016, Archives of Disease in Childhood.

[3]  P. Larkin,et al.  The Role of Care Coordinator for Children with Complex Care Needs: A Systematic Review , 2016, International journal of integrated care.

[4]  N. Al-Yateem,et al.  Determinants of Quality of Care for Adolescents and Young Adults With Chronic Illnesses: A Mixed Methods Study. , 2016, Journal of pediatric nursing.

[5]  Jing Zheng,et al.  Uncertainty and Personal Growth Through Positive Coping Strategies Among Chinese Parents of Children With Acute Leukemia , 2016, Cancer nursing.

[6]  N. Al-Yateem,et al.  Play distraction versus pharmacological treatment to reduce anxiety levels in children undergoing day surgery: a randomized controlled non-inferiority trial. , 2016, Child: care, health and development.

[7]  Amanda N Baraldi,et al.  Parent Perceptions of Illness Uncertainty and Child Depressive Symptoms in Juvenile Rheumatic Diseases: Examining Caregiver Demand and Parent Distress as Mediators. , 2016, Journal of pediatric psychology.

[8]  T. Aas,et al.  Illness uncertainty in breast cancer patients: validation of the 5-item short form of the Mishel Uncertainty in Illness Scale. , 2015, European journal of oncology nursing : the official journal of European Oncology Nursing Society.

[9]  C. Strange,et al.  The Social Environment and Illness Uncertainty in Chronic Obstructive Pulmonary Disease , 2015, International Journal of Behavioral Medicine.

[10]  C. Feudtner,et al.  Children with medical complexity and Medicaid: spending and cost savings. , 2014, Health affairs.

[11]  M. Gardner,et al.  "It was an overwhelming thing": parents' needs after infant diagnosis with congenital adrenal hyperplasia. , 2014, Journal of pediatric nursing.

[12]  S. Haas,et al.  Parental uncertainty in illness: managing uncertainty surrounding an "orphan" illness. , 2014, Journal of pediatric nursing.

[13]  H. Komatsu,et al.  The power of nursing: guiding patients through a journey of uncertainty. , 2014, European journal of oncology nursing : the official journal of European Oncology Nursing Society.

[14]  A. Abbaszadeh,et al.  Psychometric properties of the Persian version of the Mishel's Uncertainty in Illness Scale in patients with cancer. , 2014, European journal of oncology nursing : the official journal of European Oncology Nursing Society.

[15]  R. Annunziato,et al.  Strangers headed to a strange land? A pilot study of using a transition coordinator to improve transfer from pediatric to adult services. , 2013, The Journal of pediatrics.

[16]  V. Anderson,et al.  Infant cardiac surgery and the father-infant relationship: feelings of strength, strain, and caution. , 2013, Early human development.

[17]  E. Jonasch,et al.  Illness uncertainty and quality of life of patients with small renal tumors undergoing watchful waiting: a 2-year prospective study. , 2013, European urology.

[18]  N. Al-Yateem Guidelines for the transition from child to adult cystic fibrosis care. , 2013, Nursing children and young people.

[19]  M. C. Canavarro,et al.  Clinical determinants of parents' emotional reactions to the disclosure of a diagnosis of congenital anomaly. , 2013, Journal of obstetric, gynecologic, and neonatal nursing : JOGNN.

[20]  Janet L. Stewart,et al.  Making the Right Decision for My Child With Cancer: The Parental Imperative , 2012, Cancer nursing.

[21]  B. Compas,et al.  Coping with chronic illness in childhood and adolescence. , 2012, Annual review of clinical psychology.

[22]  E. Alpern,et al.  A Qualitative Assessment of Reasons for Nonurgent Visits to the Emergency Department: Parent and Health Professional Opinions , 2012, Pediatric emergency care.

[23]  F. Moola “This is the Best Fatal Illness That You Can Have” , 2012, Qualitative health research.

[24]  P. Carroll,et al.  Measuring illness uncertainty in men undergoing active surveillance for prostate cancer. , 2011, Applied nursing research : ANR.

[25]  J. Ryan,et al.  The Relationship of Father Parenting Capacity Variables to Perceived Uncertainty in Youth With a Chronic Illness , 2011 .

[26]  M. C. Canavarro,et al.  Patterns of parental emotional reactions after a pre- or postnatal diagnosis of a congenital anomaly , 2011 .

[27]  J. Jarvis,et al.  The Association of Illness Uncertainty to Parent and Youth Adjustment in Juvenile Rheumatic Diseases: Effect of Youth Age , 2011, Journal of developmental and behavioral pediatrics : JDBP.

[28]  Eun Joo Kim,et al.  Anxiety and uncertainty in Korean mothers of children with febrile convulsion: cross-sectional survey. , 2011, Journal of clinical nursing.

[29]  S. Bell,et al.  Transition of adolescents with cystic fibrosis from paediatric to adult care , 2011, The clinical respiratory journal.

[30]  C. Yeh,et al.  Evaluation of a conceptual model based on Mishel's theories of uncertainty in illness in a sample of Taiwanese parents of children with cancer: a cross-sectional questionnaire survey. , 2010, International journal of nursing studies.

[31]  J. Barroso,et al.  Patients with chronic hepatitis C undergoing watchful waiting: Exploring trajectories of illness uncertainty and fatigue. , 2010, Research in nursing & health.

[32]  A. M. Mauro Long-term follow-up study of uncertainty and psychosocial adjustment among implantable cardioverter defibrillator recipients. , 2010, International journal of nursing studies.

[33]  H. Arthur,et al.  A comparative study of uncertainty, optimism and anxiety in patients receiving their first implantable defibrillator for primary or secondary prevention of sudden cardiac death. , 2010, International journal of nursing studies.

[34]  J. Hegarty,et al.  Men's experiences of radical prostatectomy as treatment for prostate cancer. , 2010, European journal of oncology nursing : the official journal of European Oncology Nursing Society.

[35]  G. Sawicki,et al.  Cystic Fibrosis and Transition to Adult Medical Care , 2010, Pediatrics.

[36]  K. Guadalupe Understanding a meningioma diagnosis using Mishel's theory of uncertainty in illness , 2010 .

[37]  E. Wallen,et al.  Managing uncertainty about treatment decision making in early stage prostate cancer: a randomized clinical trial. , 2009, Patient education and counseling.

[38]  A. Sands,et al.  Predictors of psychological functioning in mothers and fathers of infants born with severe congenital heart disease , 2009 .

[39]  E. Clipp,et al.  Uncertainty, symptoms, and quality of life in persons with chronic hepatitis C. , 2009, Psychosomatics.

[40]  K. Steinbeck,et al.  Transition in chronic illness: Who is going where? , 2008, Journal of paediatrics and child health.

[41]  C. Wolfe‐Christensen,et al.  Objective Versus Subjective Ratings of Asthma Severity: Differential Predictors of Illness Uncertainty and Psychological Distress in College Students With Asthma , 2008 .

[42]  C. Wolfe‐Christensen,et al.  Brief report: illness uncertainty and dispositional self-focus in adolescents and young adults with childhood-onset asthma. , 2006, Journal of pediatric psychology.

[43]  L. Mullins,et al.  The Relationship of Illness Uncertainty and Attributional Style to Long-Term Psychological Distress in Parents of Children With Type 1 Diabetes Mellitus , 2006 .

[44]  M. Mishel,et al.  Uncertainty in Acute Illness , 1997, Annual Review of Nursing Research.

[45]  M. Mishel Uncertainty in illness. , 1988, Image--the journal of nursing scholarship.

[46]  M. Mishel Parents' Perception of Uncertainty Concerning Their Hospitalized Child , 1983, Nursing research.

[47]  M. Mishel Adjusting the Fit: Development of Uncertainty Scales for Specific Clinical Populations , 1983, Western journal of nursing research.

[48]  M. Mishel,et al.  The Measurement of Uncertainty in Illness , 1981, Nursing research.

[49]  C. Gay,et al.  Predictors of parent post-traumatic stress symptoms after child hospitalization on general pediatric wards: a prospective cohort study. , 2015, International journal of nursing studies.

[50]  N. Al-Yateem,et al.  Child to adult: transitional care for young adults with cystic fibrosis. , 2012, British journal of nursing.

[51]  M. Page,et al.  The relationship of maternal and child illness uncertainty to child depressive symptomotology: a mediational model. , 2012, Journal of pediatric psychology.