INNOVATIVE TOOLS TO SUPPORT FAMILY...

INNOVATIVETOOLSTOSUPPORTFAMILY

CAREGIVERS

Wendy Duggleby, PhD, RN, AOCNResearch Chair in Aging and Quality of Life

Director of Innovations in Seniors’ Care Research Unit Faculty of Nursing University of Alberta

Fostering Resilience in Family Caregivers of Seniors in Care

August 30, 2017

DefinitionofFamilyCaregivers

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)

WhyisitimportanttosupportFamilyCarersofPersonsInCare?

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.

Redefining Normal Conceptual Framework

Crucial Events• Changes in condition• Conflicting demands• Family role conflict• Financial Strain

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), 602‐616. doi:10.1177/0269216316673548

Disruptions • Environment• Roles/Relationships• Priorities• Physical and mental health

• Hope for the future



• Hope for the future• Responsibility for advocating and negotiating care

• Communication Patterns

Redefining Normal Conceptual FrameworkCarers of Person In Care

Outcomes• Anxiety• Depression• Guilt/shame• Loss and Grief• Isolation• Anger • Fear • Uncertainty

Redefining Normal Conceptual Framework


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), 602‐616. doi:10.1177/0269216316673548

Influencing Factors• Communication/Information• Attitudes towards caregiving• Support networks• Caregiver/Recipient Relationship

Coming to Terms Connecting With

Redefining NormalDisruptions • Environment• Roles/Relationships• Priorities• Physical and mental health

• Hope for the future





Influencing Factors• Communication/Information• Attitudes towards caregiving• Support networks• Caregiver/Recipient Relationship• Environment• Staff/Carer Relationship

Coming to Terms• Acknowledging

changes• Renewing

Everyday Hope• Dealing with

Guilt• Dealing with

Loss

Connecting With• Information • Options• Trusted Experts• Person in Care• Advance Care

Planning


Redefining Normal






Influencing Factors• Communication/Information• Attitudes towards caregiving• Support networks• Caregiver/Recipient Relationship• Environment• Staff/Carer Relationship

Coming to Terms• Acknowledging

changes• Renewing

Everyday Hope• Dealing with

Guilt• Dealing with

Loss

Connecting With• Information • Options• Trusted Experts• Person in Care• Advance Care

Planning

Outcomes• Sense of personhood• Reframing Hope• Self‐efficacy• Finding meaning• Preparing for death


Redefining Normal


Web‐basedInterventionsforCarers

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

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:10.2196/jmir.7564

Online interventions may offer efficient, less costly, and more accessible education and support for carers

OnlineInterventionsforCarers

1. Educational 2. Informational3. Resources4. Improving Caregiving Skills5. Monitoring6. Psychosocial Support

WhatOnlineInterventionsareAvailableforCarersofPersonsInCare?

Found 12 studiesMost 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)

Literature review of articles published 2003‐2017

Rosenetal2003Objectives:

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 carer3. 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

OnlineInterventionsRecommendations

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)

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

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

AdvisoryCom

mitteeMem

bers

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)

Thankyouto: Jillian Parragg

Laura Cottrell

Marina Ricco

Kathya Jovel‐Ruiz

Jenny Swindle

Joanne Ward

ContributingPartners:

Alzheimer Society of Alberta/NWT

Atmist

Canadian Frailty Network

Covenant Health

Innovations in Seniors’ Care Research Unit

University of Alberta Faculty of Nursing

MyTools4Care‐InCare

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TransitionToolkitChecklistEaseofUse– Month2

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TransitionToolkitChecklistFeasibility– Month2

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TransitionToolkitChecklistAcceptability– Month2

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*Significant at p ≤ 0.05

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InsightsFeasibility StudyNo comparison groupSmall Sample size No Changes in Physical or Mental Health on the SF12v2

MT4C‐ In Care Is easy to use, feasible and acceptablePotential to Increase Hope, Decrease Loss and Grief

Potential to Help Deal with Transitions

www.changestoolkit.ca

www.malespousetoolkit.ca

www.mytools4care.ca

Why? Reduce the amount of caregiving?

Continue caregiving? (i.e. improving caregiving skills, coping and problem solving)

Improve well‐being?

Enrich their experience?

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

Why?

FrameworktoGuideDecisions

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.

Thank You!

INNOVATIVE TOOLS TO SUPPORT FAMILY...

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