The Effects of Cancer on the Family: Research Findings and Intervention Strategies

Transcription

1 The Effects of Cancer on the Family: Research Findings and Intervention Strategies Laurel Northouse PhD, RN, FAAN Mary Lou Willard French Professor of Nursing University of Michigan

2 Overview Importance of Caregivers Key Concept: Interdependence How Caregivers are Affected Our Research with Families Lessons Learned and Challenges

3 Overview Importance of Caregivers Importance of Caregivers Key Concept: Interdependence How Caregivers are Affected Our Research with Families Lessons Learned and Challenges

4 Caregivers Face Multiple Demands Demands have increased dramatically in recent years Toxic treatments in out-patient settings Fewer health care resources Caregivers provide clinical tasks previously performed by nurses In-home infusions

5 Caregivers Lack Information 70% want more information Many feel unprepared and think the care they provide is less than optimal. Over 50% lack confidence on how to deal with patients emotional concerns Van Ryn et al. 2011

6 Caregivers Lack Support Caregivers are co-sufferers Perceive little support Distressed caregiver hinders patient s adjustment Northouse et al., 2001

7 Benefits of a Well-prepared Family Caregiver Better symptom management Less time in bed Higher quality of care Make fewer medication errors Report less fatigue and caregiver strain Have less depression Kurtz et al., 2004; Lau et al., 2010

8 Overview Importance of Caregivers Key Concept: Interdependence How Caregivers are Affected Our Research with Families Lessons Learned and Challenges

9 Recognize Interdependence: Treat Patient-Caregiver Dyad as the Unit of Care

10 Reciprocal Relationship Exists: Each Person Affects the Other Patient r.29 to.35 = Spouse They react to cancer as an emotional system Hagedoorn et al., 2008; Hodges et al., 2005

11 Patients Symptoms Affect Spouses As prostate cancer patients symptoms increase, spouses report a decrease in quality of life Patient Symptoms Urinary incontinence Erectile dysfunction Fatigue Effects on Spouses Social quality of life Sexual satisfaction Quality of life Kornblith et al.,1994

12 Caregivers Anxiety Affects Patients Unrecognized Pathway Longitudinal studies on anxiety Strongest effect Caregiver Patient Decreasing caregivers anxiety is likely to have a calming effect on the patient Northouse et al., 2000; Segrin et al., 2007

13 Recognize Interdependence: Treat Patient-Caregiver Dyad as the Unit of Care The more we help caregivers, the more we will help patients Treating them together creates a synergistic effect that is stronger than treating each person alone Many interventions require a dyadic approach i.e., pain management

14 Overview Importance of Caregivers Key Concept: Interdependence How Caregivers are Affected Our Research with Families Lessons Learned and Challenges

15 The Multiple Effects of Illness on Caregivers Quality of Life Four Effects Emotional Physical Social Spiritual

16 Emotional Effects Couples with cancer report more distress than those without cancer Distress levels of patients and caregivers are similar Some caregivers have more distress than patients Hagedoorn et al.,2008; Hodges et al., 2005; Bishop et al.,2007

17 Duration of Adjustment Problems During First Year Following Breast Cancer Dx Northouse et al., 1998

18 Emotional Toll of Advanced Cancer on Spouse Caregivers Emotional Spouses report more depression than patients in advanced phase of illness Clinical Depression Patients 23% Spouses 39% p value <.0001 Braun et al., 2007; Northouse et al., 2002

19 Dyads at Risk Characteristics 20-30% of dyads at risk of high emotional distress or depression Low support Pre-existing relationship problems High symptom distress Advanced disease High caregiver burden Female gender Edwards & Clarke, 2004, Kurtz et al., 2004; Lewis et al. 2008; Northouse et al., 2000

20 Physical Effects 53% report sleep problems Fatigue: both physical and mental Cardiovascular effects Stress and watching patient suffer: Cardiovascular reactivity BP and heart rate Jensen & Given, 1993; Monin, et al., 2010

21 Changes in Caregivers Immune Function Due to Stress Physical More infections Exacerbates chronic diseases Flare-ups in previously stable autoimmune illnesses such as arthritis Rohleder et al., 2009

22 Physical Increase in Inflammation: Caregivers Versus Controls C-reactive protein mg/l Rohleder et al., 2009

23 Physical Change in Healthy Behaviors Among Caregivers 42% decrease in physical activity 35% gain weight 12% increase alcohol use 56% negative change in their health Caregivers are more likely to forget to take own medications Beesley et al., 2010

24 Social Effects Relationship strain Limits social life Communication problems

25 Social Communication Problems Among Patients and Caregivers Many families have communication problems Partners may have different preferences for communication Some families hide feelings from one another, over-protective Long-standing family problems reemerge Avoid sensitive or serious topics

26 Spiritual Spiritual Effects on Families Cancer can be a transformational experience

27 Spiritual Effects on Families Spiritual Cancer can be a transformational experience Changes priorities Provides meaning and purpose in life Being able to find meaning is related to less anxiety and depression, and better adjustment Germino et al., 1995; Mellon et al., 2002; Harden et al., 2002

28 Importance of Caregivers Key Concept: Interdependence How Caregivers are Affected Our Research with Families Lessons Learned and Challenges

29 Family-based Program of Research Conducted with Patient-Caregiver Dyads Our Research Provides Information and Support

30 FOCUS Program Content F O C Family Optimism Coping Communication, support, strengths Positive outlook, realistic goals Active coping, healthy lifestyle U Uncertainty Information, living with uncertainty S Symptoms Management of symptoms

31 Our Research Delivery of Nursing Intervention FOCUS Program 5 contacts Home Visit Phone Call Home Visit Phone Call Home Visit Delivered over three-month period

32 RCT 1 Amer. Cancer Society Recurrent Breast Cancer N = 200 Dyads Intervention Testing: 15 years RCT 2 National Cancer Inst. Prostate Cancer New, Recurrent, and Advanced N = 263 Couples RCT 3 National Cancer Inst. Advanced Cancer Lung, Colorectal, Breast, and Prostate N =484 Dyads Risk Status Randomized Randomized Randomized Focus 5 sessions Control Focus 5 sessions Control Focus 3 sessions Focus 6 sessions Control Compared Doses Outcomes Outcomes Outcomes

33 Effects for Patients Our Research Across Three Efficacy Trials Breast Cancer 200 dyads Prostate Cancer 263 dyads Less negative appraisal of illness Less hopelessness Less uncertainty Better dyadic communication Advanced Cancer 484 dyads Better coping More healthy behaviors Higher self-efficacy Higher social QOL Northouse et al., 2005, 2007, 2012

34 Effects for Caregivers Our Research Across Three Efficacy Trials Breast Cancer Less negative view of caregiving Prostate Cancer Advanced Cancer Less negative view of caregiving Less hopelessness Less uncertainty More active coping More self-efficacy Better dyadic communication Higher quality of life Better coping More healthy behaviors Higher self-efficacy Higher social quality of life Higher emotional quality of life

35 Importance of Caregivers Key Concept: Interdependence How Caregivers are Affected Our Research with Families Lessons Learned and Challenges

36 Lessons Learned: Applying Research to Practice Nurse Patient Family Member Northouse et al. 2002; Northouse et al., Seminars in Oncology Nursing, in press

37 Lessons Learned Assess Both Caregivers and Patients What are the key questions to ask caregivers? How is this affecting you? What information or help do you need? What helps you manage stress? Listen to their Story. What are you doing to take care of yourself?

38 Use 3-Way Communication Lessons Learned Meet jointly with patient and family caregiver Obtain each person s point of view Three-way Communication Nurse Encourage them to share feelings to eliminate guesswork and misunderstandings Patient Family Member

39 Lessons Learned Encourage Family Teamwork Since the illness affects both of you Look for ways to support each other Work together to solve problems Express appreciation Take one another s concerns seriously Be aware of each other s strengths and make the most of them

40 Identify Strengths Lessons Learned You both do a good job of supporting one another during these difficult times. You make a good team It sounds like humor is one of your family strengths It was great you drove your wife for her chemo appointment. Your help is important

41 Lessons Learned Provide Information and Support Provide information to both patient and caregiver Invite caregiver to be present Provide information tailored to their needs Teach them what to expect to reduce uncertainty

42 Refer to Agencies and Websites Lessons Learned

43 Lessons Learned Encourage Ongoing Family Communication Plan a Kitchen Table talk, turn off cell phones and TV Share your concerns; it makes them less overwhelming Be patient with one another, even if you see things differently Try not to interrupt, argue or criticize Find common ground if your communication styles differ

44 Lessons Learned Promote Active Coping Active Coping - Problem-solving - Planning - Seeking Support Avoidant Coping - Denial - Detachment - Substance Abuse Avoidant coping leads to more problems

45 Lessons Learned Offer Ways to Cope Engage in enjoyable activities together Try to not let cancer consume you Maintain supportive relationships Consider the meaning and purpose of the illness Use acceptance it is a powerful coping strategy

46 Encourage Caregivers to Take Care of Themselves Lessons Learned Use exercise to relieve stress Try to eat nutritious food Get adequate sleep Keep regular health check ups

47 Lessons Learned Promote Restoration Spend time in nature, it can reduce mental fatigue Other restorative activities: Go for a walk outdoors Spend time in the garden Enjoy a view of nature Nature helps to restore cognitive function Cimprich, 1993; Cimprich & Ronis, 2003

48 Final take away message Treat the patient and family caregiver as the unit of care