Interventions to help the family cope

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1 Family issues and sexual problems in cardiovascular disease Interventions to help the family cope Anna Strömberg, RN, PhD, NFESC, FAAN Professor and head of Division of Nursing, Department of Medical and Health Sciences, Linköping University Research co-ordinator, Heart failure nurse specialist, Department of Cardiology, Linköping University Hospital, Sweden

2 Declaration of interest Consultant for Novartis on disease specific instrument development for caregiverburden 2

3 How do we define a family? A unit that consists of individual family members Family members have: close connections to each other (not always voluntary) a common history and a beliefs system Different definition of families: Individuals bond together with one another by blood ties, marriage or adoptions and belong to the same household Individuals bound together by strong emotional ties. The families are self defined

4 Family issues in cardiac illness Families have an important role in supporting patients with both practical and emotional support Luttik et al. Eur J Cardiovasc Nurs 2008;7:3-9 partner Patient Children and grandchildren Other relatives

5 Family issues in cardiac illness Patients can change regarding: Roles, both emotional and physical Temper, personality Physical capacity and vitality Decreased social interactions Sexual problems Being included in care Emotional reactions in family members Mental well-being, depressive symptoms Economical aspects Pihl et al. Can J Cardiovasc Nurs 2010;20(3):9-17, Mårtensson J et al. Heart Lung. 2001;30(5):341-50, Ågren S et al. J Cardiovasc Nurs 2011;26:65-73, Luttik ML et al.j Adv Nurs Jul;65(7):

6 Societal perspective Aging population with increasing prevalence of heart disease and longer survival after diagnosis Shorter inhospital stay The care system in transition, moving from a hospital based care to a home/community based system Expectations from the health care that the family provides support and care The health care focus on improving patient outcomes, but the awareness of partners and families situation is increasing with more initiative to support caregivers and families

7 Health-related quality of life in partners Ågren S et al. J Cardiovasc Nurs 2011;26:65-73 Comparisons between patients, partners and reference group in the 8 dimensions of SF Patients Partners References 20 0 PF RP BP GH VT SF RE MH

8 Symptoms of depression The distribution of the categorisation of Beck depression inventory-ii for patients with chronic heart failure and their partners. Partners had significantly less symptoms of depression p< Ågren et al. J Cardiac Fail 2012 (epub ahead of print) Patients (n=111) Partners (n=118) n (%) n (%) No depressive symptom (score 0-13) 72 (65) 103 (87) Minor depressive symptom (score 14-19) 18 (16) 12 (10) Moderate depressive symptom (score 20-28) 15 (14) 2 (2) Major depressive symptom (score 29-63) 6 (5) 1 (1)

9 Caregiver burden Caregiving has both positive and negative effects on families Almost one third of the partners experienced a moderate caregiver burden Ågren S et al. Eur J Cardiovasc Nurs 2010;9: , Hwang B et al. Am J Crit Care 2011:20(6):431-4

10 More disruption of caregivers' schedules + Low social support + Poor mental and physical health of the partner + Caregiver burden Poor patients health and functional status +&0 Low perceived control + Young or Advanced age + Luttik et al. Eur J Heart Fail 2007, Saunders MM. West J Nurs Res 2008,Ågren S et al. Eur J Cardiovasc Nurs 2010, Hwang et al. J Card Fail 2010, Hwang et al. Am J Crit Care

11 Caregiver burden Lack of personal freedom followed by isolation, limited social interaction and private time were found to be most burdensome areas. Ågren S et al. Eur J Cardiovasc Nurs 2010;9:

12 Highlight caregivers situation Long term caregivers also need to think of their own needs and their own health first put the oxygen mask over your own face, then help others 12

13 Resources for family support Caregiving organisations Web sites Heart failure matters Support groups internet-based face-to-face Respite care Psychoeducational and skills-training Therapeutic counseling 13

15 Interventional studies in cardiac care targeting families 15

16 Areas for interventions Need for interventions to increase caregivers' sense of control and social support Family caregivers may need additional support at deterioration and immediately after patient hospitalisations Hwang B et al. Am J Crit Care 2011:20(6):431-4 High marital quality with sufficient emotional support influenced long-term survival in patients with cardiac disease Rohbaugh et al. Am J Cardiol 2006:98: Families want more support from health care Molloy et al. Eur J Heart Fail 2005;7: , Dinesen et al. Eur J Cardiovasc Nurs 2008;7:239-46

17 Two types of family interventions Family-related Family is the context individual level Family-centered Family in focus family level

18 Telehealth Chiang LC et al. Int J Nurs Stud May 24. [Epub ahead of print] Quasi-experimental study design with 63 families included Experimental group: 30 families who chose telehealth care after discharge from the hospital in addition to discharge planning Control groups: 33 families received discharge planning Telenursing/family nursing specialist provided 24-h remote monitoring of patients' health condition and counselling by telephone. Data on caregiver burden, stress mastery and family function were collected before discharge from the hospital and one month later at home.

19 Telehealth Chiang LC et al. Int J Nurs Stud May 24. [Epub ahead of print Effects of group, time, and group time interaction were analysed using Mixed Model in SPSS (17.0) Telehealth care combined with discharge planning could reduce family caregiver burden, improve stress mastery, and improve family function during the first 30 days after discharge from the hospital The concepts of providing transitional care through telenursing seem to be successful

20 Group-based multi-professional education programme for families Löfwenmark C et al. Patien Educ Couns. 2011;85(2):e162-8 Family members (n=128) were randomly assigned to intervention who received group education or control-group who received information according to hospital routines Programme effects were evaluated with CHF knowledge questionnaire, patient readmissions and number of days hospitalised during 18 months The intervention increased family members' knowledge about CHF No effect on patient's health care utilization 20

21 Psychoeducational dyad intervention Ågren et al. J Cardiac Fail 2012, Liljeroos et al. abstract ESC congress 2012 A randomised, controlled design with follow up assessment after 3, 12 and 24 months Control group received care as usual including traditional education and support The intervention group received integrated care delivered in three modules by heart failure nurses End-points Primary: time to first event in patients with chronic HF Secondary: quality of life and emotional well-being, perceived control, selfcare, caregiverburden and perceived knowledge in dyads of patients with chronic HF and their partners During short term follow up the intervention significantly improved the patients level of perceived control

22 Methodological issues lessons learnt Ågren et al. J Cardiac Fail 2012, Liljeroos et al. abstract ESC congress 2012 A total of 40% of eligible dyads were not willing to paticipate, 10% drop outs during data collection Problems with generalisability to the most frail dyads Difficult to control for contamination of the usual care group Outcome variables? Time, content and intensity of the intervention 22

23 How to assess and analyze quantitative data on a family level? No consensus among family nursing researchers Most common solution: Assessments on individual-level Creating a family/dyad score representing the family-level Scoring alternatives: Average score the mean score among the family members Highest score - the highest score among the family members Lowest score - the lowest score among the family members Difference score the difference between the highest and lowest score among family members

24 Take home message Families have an important role in providing cardiac patients with practical and emotional support Families experience caregiverburden and mental strain and want more support from health care There are few randomised studies evaluating interventions to families affected by cardiac disease Methods for conducting and evaluating family interventions need to be further developed 24

25 Thank you for the attention!

The FOCUS Program: Helping Cancer Patients and Family Their Caregivers. Laurel Northouse PhD, RN, FAAN Professor of Nursing University of Michigan

The FOCUS Program: Helping Cancer Patients and Family Their Caregivers Laurel Northouse PhD, RN, FAAN Professor of Nursing University of Michigan Co-director, Socio-behavioral Program U of M Comprehensive