The Voices of Family Caregivers: A Window into their Lived Experience Suzette Brémault-Phillips1, Jasneet Parmar2,3, Melissa Johnson3, Arlene Huhn4, Anna Mann5, Lesley Charles2, Victoria Tian2, Lori‑Ann R. Sacrey2 1University

of Alberta, Faculty of Rehabilitation Medicine, 2University of Alberta, Faculty of Medicine and Dentistry, 3 Covenant Health, Network of Excellence in Seniors Health and Wellness, 4Alberta Caregivers Association, 5Alzheimers Society of Alberta and the Northwest Territories  

BACKGROUND

   

    Family caregivers are the backbone of the healthcare system. In Canada, unpaid caregivers contribute an estimated $25 billion of service to the healthcare system. Caring, however, can take a toll on caregivers and leave them overburdened, particularly if they provide care: •  For more than 21 hrs./wk. •  To care partners with depression, cognitive decline, behavioural changes or terminal conditions

RESULTS

(1) provide more than 21 h per week of care; (2) care for persons with depression, cognitive decline, behavioural change; or

FOCUS GROUPS Three 2-hr. focus groups were held with family caregivers (N=23) on April 2nd and 3rd, 2014 at the Alzheimer Society, and April 4th, 2014 at the Alberta Caregivers Association. CAREGIVER EXPERIENCE: EMERGENT THEMES

Caregivers can experience: •  Deteriorating physical/mental health •  Social isolation, family conflict •  Job loss or financial insecurity •  Loss of energy and time for self-care •  Challenges navigating the healthcare system or accessing resources Caregivers require supports to: •  Foster resilience (adapt well in the face of adversity) •  Ensure that they can continue to provide care while maintaining their own wellbeing.

OBJECTIVES This research study aimed to: 1.  Listen to the voices and lived experience of family caregivers 2.  Identify challenges and strategies that foster their resilience

Barriers to Resilience 1.  Caregiver stress •  Demands on time, energy and resources •  Shifting roles, responsibilities, and relationships •  Emotional, mental, physical and financial strain •  Understanding medical language, information and procedures •  Assuming decision-making responsibilities 2.  The healthcare system and healthcare professionals •  Not overly supportive or inclusive of family caregivers •  Unresponsive to family’s unique challenges and needs •  Hard to find and access resources

enhance their resilience

METHOD As part of a pre-conference activity to a CIHR planning conference, “Supporting Family Caregivers of Seniors” held in Edmonton in April 2014, this research project utilized an ethnographic, qualitative approach. Focus groups with family caregivers residing in the Edmonton area were audio-recorded, transcribed, and thematically analyzed. Patterns and emergent themes were identified.

To foster the resilience of family caregivers, it is important to: •  Better understand their lived experience •  Support them as they: •  Learn about and take on caregiving roles •  Experience physical, social, emotional, spiritual and financial strain •  Navigate the system and access resources and services •  Provide them with education and resources •  Include family caregivers and the care partner in discussions and care planning •  Effectively manage the care partner’s disease process(es) Understanding the lived experiences of family caregivers informs: •  Design of public policies, programs, interventions for care recipients and caregivers •  Research priorities

“Caregiving is a 24/7 job.” “When you dedicate yourself to caregiving, (…) you kind of leave everything behind.” Strategies and Resources that Foster Resilience 1.  Personal attributes •  Motivation to care for the care partner •  Strength of character and spirit •  Coping strategies (acceptance, gratitude, humour, exercise, hobbies, self-care) 2.  Relationship with self, the care partner, family, friends, community 3.  System supports and resources •  Respite care, day programs, care facilities, distress/help lines, support groups •  Healthcare and community-based programs, and non-profit associations •  Medical and legal supports “I have found the inner strength to dig deep and find compassion and whatever it takes to look after my parents…” “Support groups have been the biggest help.” Recommendations and Priority Service and Research Areas

3.  Gather recommendations regarding education, resources, and supports that might

CONCLUSION

•  Community and respite supports and services •  Public service announcements to helps caregivers recognize they are caregiving •  Education for family caregivers and healthcare professionals (e.g. delirium recognition, dementia care, assertiveness training) •  Use of accessible language when speaking with caregivers •  A better resourced and responsive elder-friendly and caregiver-centred system •  System navigators and dementia health link •  Political advocacy •  Financial support (e.g. expanded tax credits) “We need resources, placements, guides to let people know how to find [resources] that meet the needs of the caregiver and individual experiencing the struggles.” “A navigator - you need someone to tell you how to get through the system.” “Medical professionals should get training to communicate to patients and caregivers.” “We have to start [advocating] to our MLAs.”

LIMITATIONS This study reflects results from a small sample of family caregivers (N=23) residing in the Edmonton area who self-selected to engage in the focus groups. As a result, the findings may not be generalized across all family caregivers.

ACKNOWLEDGEMENT This study was funded by Canadian Institutes of Health Research (CIHR; Grant number 316460), the Alberta Seniors Health Strategic Clinical Network, Covenant Health, the Alberta Caregiver Association and the Alzheimer’s Society of Alberta and NWT. The authors sincerely thank the caregivers who shared their lived experiences and insights.