INNOVATIVE TOOLS TO SUPPORT FAMILY CAREGIVERS

Transcription

1 INNOVATIVE TOOLS TO SUPPORT FAMILY CAREGIVERS Fostering Resilience in Family Caregivers of Seniors in Care August 30, 2017 Wendy Duggleby, PhD, RN, AOCN Research Chair in Aging and Quality of Life Director of Innovations in Seniors Care Research Unit Faculty of Nursing University of Alberta

2 Definition of Family Caregivers A caregiver is an individual who provides ongoing care and assistance, for family members and friends in need of support due to physical, cognitive or mental health conditions (CHPCA, 2012) Carers are broadly defined as lay people, (who may or may not be related by blood), in a close supportive role who share in the illness experience of the patient and who undertake vital care work (financial, physical, emotional, etc.) (Payne, 2013)

3 Why is it important to support Family Carers of Persons In Care? Families/friends (carers) continue to provide significant care even after their relative is admitted to long term care (LTC) Evidence indicates that their mental health might actually worsen after the institutionalization of their family member Carers of older persons residing in LTC experience multiple, complex transitions, such as changes in roles/relationships, physical and mental health, and loss of hope and grief.

4 Redefining Normal Conceptual Framework Crucial Events Changes in condition Conflicting demands Family role conflict Financial Strain Disruptions Environment Roles/Relationships Priorities Physical and mental health Hope for the future Outcomes Anxiety Depression Guilt/shame Isolation Anger Fear Uncertainty Duggleby et al., (2017). A metasynthesis study of informal caregivers transition experiences caring for community dwelling persons with advanced cancer at the end of life. Palliative Medicine, 31(7), doi: /

5 Redefining Normal Conceptual Framework Carers of Person In Care Crucial Events Changes in condition Conflicting demands Family role conflict Financial Strain Disruptions Environment Roles/Relationships Priorities Physical and mental health Hope for the future Responsibility for advocating and negotiating care Communication Patterns Outcomes Anxiety Depression Guilt/shame Loss and Grief Isolation Anger Fear Uncertainty

6 Redefining Normal Conceptual Framework Crucial Events Changes in condition Conflicting demands Family role conflict Financial Strain Disruptions Environment Roles/Relationships Priorities Physical and mental health Hope for the future Coming to Terms Redefining Normal Connecting With Outcomes Anxiety Depression Guilt/shame Isolation Anger Fear Uncertainty Influencing Factors Communication/Information Attitudes towards caregiving Support networks Caregiver/Recipient Relationship Duggleby et al., (2017). A metasynthesis study of informal caregivers transition experiences caring for community dwelling persons with advanced cancer at the end of life. Palliative Medicine, 31(7), doi: /

7 Redefining Normal Conceptual Framework Carers of Person In Care Crucial Events Changes in condition Conflicting demands Family role conflict Financial Strain Disruptions Environment Roles/Relationships Priorities Physical and mental health Hope for the future Responsibility for advocating and negotiating care Communication Patterns Outcomes Anxiety Depression Guilt/shame Loss and Grief Isolation Anger Fear Uncertainty Coming to Terms Acknowledging changes Renewing Everyday Hope Dealing with Guilt Dealing with Loss Redefining Normal Connecting With Information Options Trusted Experts Person in Care Advance Care Planning Influencing Factors Communication/Information Attitudes towards caregiving Support networks Caregiver/Recipient Relationship Environment Staff/Carer Relationship

8 Redefining Normal Conceptual Framework Carers of Person In Care Crucial Events Changes in condition Conflicting demands Family role conflict Financial Strain Disruptions Environment Roles/Relationships Priorities Physical and mental health Hope for the future Responsibility for advocating and negotiating care Communication Patterns Outcomes Anxiety Depression Guilt/shame Loss and Grief Isolation Anger Fear Uncertainty Coming to Terms Acknowledging changes Renewing Everyday Hope Dealing with Guilt Dealing with Loss Redefining Normal Connecting With Information Options Trusted Experts Person in Care Advance Care Planning Influencing Factors Communication/Information Attitudes towards caregiving Support networks Caregiver/Recipient Relationship Environment Staff/Carer Relationship Outcomes Sense of personhood Reframing Hope Self efficacy Finding meaning Preparing for death

9 Web based Interventions for Carers 88.5% of Canadians use the internet and 80% of these use the internet to obtain health information Carers use the internet to connect with other caregivers and for information and support Online interventions may offer efficient, less costly, and more accessible education and support for carers Ploeg et al., (2017). Web Based Interventions to Improve Mental Health, General Caregiving Outcomes, and General Health for Informal Caregivers of Adults with Chronic Conditions Living in the Community: Rapid Evidence Review. Journal of Medical Internet Research, 19(7): e263. doi: /jmir.7564

10 Online Interventions for Carers 1. Educational 2. Informational 3. Resources 4. Improving Caregiving Skills 5. Monitoring 6. Psychosocial Support

11 What Online Interventions are Available for Carers of Persons In Care? Literature review of articles published Found 12 studies Most online were developed for carers of persons living in the community Often did not designate for whom the interventions were focused Only one study focused on carers of persons residing in long term care homes (Rosen et al, 2003)

12 Rosen et al 2003 Objectives: To enhance family participation in nursing homecare through a web based system of interactive video training and interactive communication with the facilities. Curriculum: Focus was to provide educational content 1. Carer Challenges Carer Skills 2. Carer Qualities: What it takes to be a carer 3. Communication Skills: Communicating with your family member with dementia 4. Understanding Agitation and Aggression. What is Agitation and Aggression? 5. Causes of Agitation and Aggression Internal Stimuli: Pain, Delirium, Depression, Paranoia 6. External Stimuli: Environment, Carer Stress, Bewilderment Pilot Study: 18 people Findings: Increase in knowledge of caregiving

13 Online Interventions Recommendations Adapted to specific caregiving groups Tailored to the Individual (Flexible) Accessible and easy to use Protect participants privacy and confidentiality Add a social component as carers benefit from the experiences of others Focus on decreasing loneliness and increasing supports (not symptom management)

14 Developed to support carers of persons with dementia living in 24 hour care deal with their significant changes Based on Transition Theory Was evaluated for ease of use, feasibility, acceptability, and satisfaction

15 Principle Investigator: Wendy Duggleby, University of Alberta Co investigators: Jenny Ploeg, McMaster University Carrie McAiney, McMaster University Jasneet Parmar, University of Alberta Jayna Holroyd Leduc, University of Calgary Shelley Peacock, University of Saskatchewan Kevin Brazil, Queen s University, Belfast Cheryl Nekolaichuk, University of Alberta Sunita Ghosh, University of Alberta Dorothy Forbes, University of Alberta Sharon Kassalainen, McMaster University Knowledge Users: Arlene Huhn, Alzheimer Society of Alberta & NWT Kathy Classen, Covenant Health Sandra Woodhead Lyons, ICCER Sharon Baxter, CHPCA

16 Advisory Committee Members Brenda Bell (Caregiver) Bernie Travis (Caregiver) Brian Wilson (Caregiver) Arlene Huhn (AS of Alberta/NWT) Jasneet Parmar (Covenant Health Seniors Wellness Initiative) Kathy Classen (Covenant Health Seniors Wellness Initiative) Sandra Woodhead Lyons (ICCER) Tim Bowen (Covenant Health) Sheli Murphy (Covenant Health) Tracy Humphry (Covenant Health) Sharon Baxter (CHCPA)

17 Thank you to: Jillian Parragg Laura Cottrell Marina Ricco Kathya Jovel Ruiz Jenny Swindle Joanne Ward

18 Contributing Partners: Atmist Alzheimer Society of Alberta/NWT Canadian Frailty Network Covenant Health Innovations in Seniors Care Research Unit University of Alberta Faculty of Nursing

19 My Tools 4 Care In Care

20

21

22

23

24

25

26

27

28

29

30

31

32

33

34 Transition Toolkit Checklist Ease of Use Month Strongly Disagree Disagree Neutral Agree Strongly Agree 2 0 Q1 Q2 Q8

35 Transition Toolkit Checklist Feasibility Month Strongly Disagree Disagree Neutral Agree Strongly Agree 2 0 Q3 Q4 Q5 Q9

36 Transition Toolkit Checklist Acceptability Month Strongly Disagree Disagree Neutral Agree Strongly Agree Q6 Q7

37 Satisfaction 1 and 2 months Two months Dissatisfied Satisfied Greatly Satisfied

38 HHI and NDRGEI Mean Scores * * Baseline 1 Month 2 Months 10 * * 0 HHI Total HHI Factor 3* NDRGEI Total* * Depression* Tension & Guilt* * *Significant at p 0.05

39 Total Health and Social Service Cost Baseline Total Cost 2 Months

40 Insights Feasibility Study No comparison group Small Sample size No Changes in Physical or Mental Health on the SF12v2 MT4C In Care Is easy to use, feasible and acceptable Potential to Increase Hope, Decrease Loss and Grief Potential to Help Deal with Transitions

41

42 Why? Reduce the amount of caregiving? Continue caregiving? (i.e. improving caregiving skills, coping and problem solving) Improve well being? Enrich their experience?

43 Why? Help Carers Care for Persons In Care? Support Carers Deal with their Experience? Family Centric Approach

44 Framework to Guide Decisions Why? Who is the focus? Interventions complex interventions need to be adapted to the population and feasible and acceptable to carers. Has it been evaluated? Located on trusted website.

45 Thank You!