Psychosocial Impact of Chronic Illness & Fostering Adaptive Coping

Transcription

1 Psychosocial Impact of Chronic Illness & Fostering Adaptive Coping Eleanor Mackey, Ph.D. Assistant Professor of Psychology and Behavioral Health Children s Na?onal Health System

2 Objectives Understand the psychosocial context of childhood chronic illness Identify styles of coping of chronic illness in childhood Identify specific strategies for coping with chronic illness in childhood

3 Overview Discuss models of psychosocial context of and adaptation to chronic illness Discuss impact of chronic illness on children and families Discuss styles of coping and strategies for improving coping in children with chronic illness

4 Chronic Illness in Children Chronic illness is a health problem that lasts 3 months or more, affects a child s normal activities, and requires extensive medical care. 1 Phases 2 Acute = diagnosis phase with fear, stress, adjustment Prolonged stress = extended treatment, recovery, survivorship Chronic conditions may be associated with chronic stress 1 Mokkink et al. (2008), 2 Compas et al. (2012)

5 Child in Context

6 Development in the Context of Chronic Illness

7 Wallander and Varni Model

8 What Does This Mean? Keep these models in mind when evaluating a child with a chronic illness and their functioning Outcomes and difficulties will vary widely from child to child and family to family Consider where family identifies difficulties in order to best target intervention/prevention efforts Consider where strengths are to promote coping

9 Psychological difficulties in youth with Celiac Disease Recent literature suggests: May have higher rates of anxiety, depressive, and somatic symptoms as compared to healthy controls 1, but findings mixed. 2 Social situations challenging as youth grow older 3 Isolation, social anxiety, embarrassment, avoidance of social situations that involve food Sense of unfairness Overall impact on quality of life 1 Mazzone et al. (2011), 2 Esenyel et al. (2014), 3Arnone & Fitzsimons (2012)

10 Impact on Families Siblings 1 Indirectly and directly affected by chronic illness Depression and anxiety, peer activities, and cognitive development potentially affected by having sibling with chronic illness. Family system 2 Large impact on family meals and sociocultural customs related to food. Disruption to family activities 1 Sharpe & Rossiter (2002), 2 Bacigalupe & Plocha (2015)

11 Adherence in Celiac Disease Family Systems 1 Social isolation and misunderstanding of CD and related diet significant barriers to adherence Support from broader systems and planning ahead significant facilitators of adherence Adolescence 2 Particularly challenging due to desire to fit in with peers, independence from parents, rebellion 1 Bacigalupe & Plocha (2015), 2 Arnone & Fitzsimons (2012)

12 Coping Type of Coping Coping Primary Control Coping Secondary Control Coping Disengagement Coping Defini.on Conscious and voli?onal efforts to regulate oneself and/or the environment in response to stress. Efforts to change a stressor (e.g., problem solving) or one s emo?onal reac?ons to a stressor (e.g., emo?onal expression) Efforts to adapt oneself to a stressor, by strategies such as cogni?ve reappraisal, posi?ve thinking, acceptance, and distrac?on Efforts to orient away from a stressor or one s reac?ons to a stressor (e.g., avoidance, denial) Compas, Jaser, Dunn, & Rodriguez (2012)

13 Adaptive Coping Research suggests that acceptance based types of coping may be the most effective for childhood chronic illnesses which are uncontrollable Modifications of Cognitive Behavioral Therapy to include Acceptance- based and Mindfulness treatment approaches may be particularly useful

14 Adaptive Coping with Celiac Disease Iden?fying and Expressing Feelings Talk with others, journal or write a lezer Younger children may use play drawing or ac?ng to express feelings Encourage families to communicate and remind parents that they set example for how to express feelings Use role play, e.g., how to speak with others about having celiac disease and gluten- free diet

15 Adaptive Coping with Celiac Disease Cogni?ve Strategies Use self- talk for difficult situa?ons and feelings Maintain balanced thinking Change channels distract yourself by switching to a new topic or ac?vity Learn problem solving skills set appropriate expecta?ons and goals, evaluate pros and cons of op?ons, consider consequences/results

16 Adaptive Coping with Celiac Disease Engaging in Enjoyable Ac?vi?es Create a list in advance, so you are prepared Have as varied a list as possible Consider both ac?ve and passive tasks Relaxing and Managing Stress Deep breathing, visual imagery, progressive muscle relaxa?on Physical ac?vity Coun?ng, listening to music, etc.

17 Adaptive Coping with Celiac Disease U?lize the Resources Around You Connect with others with celiac disease via support groups, camps, etc. Engage with the larger community through cooking classes and gluten- free expos

18 Conclusion Chronic illness in children presents challenges to normal development, family functioning, and mental and physical health outcomes Outcomes vary widely among individuals and families Identifying strengths and challenges, promoting adaptive coping, and applying empirically supported techniques for intervention/prevention of problems is an important role of health care providers