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Table 3 Caregivers experiences: strategies and resources that facilitate resilience

From: The voices of family caregivers of seniors with chronic conditions: a window into their experience using a qualitative design

Theme Findings
1. Personal attributes Caregivers identified personal attributes, including motivations for caregiving, sense of purpose and validation, spirituality, emotional experiences, and coping strategies that fostered resilience. “I wasn’t sure either what I needed, you know, at the beginning of the process because this isn’t just about caregiving and my parents, it’s also about me and my personal journey”
1.1 Personal motivations for caregiving Family members may provide support for a variety of reasons, with several motivators being intrinsic factors, reciprocity, commitment, and behaviour modeling
 Caregivers noted being motivated to provide support out of love. “I think I sort of learned a different dimension of love. I don’t know quite how to say that, but sometimes the greatest joy in my life is seeing my mom”
 Caregivers of parents are strongly motivated to repay their parent’s love and dedication. Many spoke of a sense of duty, role of protector, or chance to care for their parents as their parents did for them in the past. “My parents were awesome, they’ve been very, very supportive… were always there for me so it’s just natural that I would absolutely reciprocate, absolutely”
  Spouses provide care out of an enduring commitment to their partner. “I know my husband would go to the ends of the earth if it was me …” and “I just think this is my wife. I couldn’t abandon her”
 Some caregivers noted the opportunity to model behaviours of compassion and commitment to their children, perhaps to encourage them to take care for them when they are older. “I’m hoping that you know someone is going to be compassionate towards me, there’s a little bit of that, but it’s something they need to learn, so learning compassion”
 Others hope that the experience is “a time of growth” for their children. “It was a time of growth for my children, a terrible journey, but a real growth”
1.2 The strength of the human-spirit Caregivers spoke of the inner strength they draw on while providing support. “Just knowing that I have found the inner strength to dig deep and find that compassion and whatever it takes to look after my parents…You know you’re doing the best for them and by them”
In times of struggle and loneliness, caregivers noted finding comfort in their spirituality. “Internal resource…they’re my spirituality. They remind me that there’s a bright side of the deterioration and the dying and the grieving”
Some found strength in that which gives them meaning, purpose, or connection, or draw strength from prayer, their faith and relationship with God “I do say prayers a couple of times a week. That got to be a habit that I was asking for help a couple of times a week for a long time”
For caregivers whose relationship with care partners are complicated by past abuse or estrangement, spirituality enabled them to forgive and heal. “Part of my journey has been dealing with my parents who have been abusive - to now be advocating for them. I have been blessed that I have a sister who is a counsellor; I’m part of a pastoral team and it’s been very healing”
1.3 Coping strategies Caregivers employ a variety of coping strategies to regain control of what they can in their lives and accept that which they can’t (e.g. the care partner’s gradual deterioration). Such strategies help caregivers gain confidence and devise effective strategies to manage stress. Managing high expectations of themselves helps to decrease guilt and self-criticism. The recognition of their own limits leads to better self care, preventing caregiver burnout
 Self-acceptance: “I’m doing the best I can and you know to me that helped get me through a lot because I knew I was doing the best I could and who can ask for more really”
 Attitude of gratitude: “I started to say thank you instead of help me and that has made a huge, tremendous difference to me”
 Maintaining a sense of humour, attributing problematic behaviour to the illness, and focusing on the joys of caregiving helped them be resilient
1.4 Emotional experience Caregivers can experience a range of positive emotions that can facilitate resilience. Caregivers described feeling strengthened when their care partner and others were appreciative of them, showed love, reassured them and recognized their efforts and commitment:
 Appreciated: “My husband was always saying how much he loved me and how much he appreciated what I did and “without you I don’t know where I would be” and those kinds of things on a very regular basis. I felt very, very appreciated I really did”
 Loved: “Love, I mean in all kinds of ways and any sources including staff - they hug her and she smiles. Smiles are big and a generosity of spirit” and “When I’ve said, “I love you,” I have heard him mumble, “I love you too”
 Reassured: “I just feel good inside when I see that my dad is happy and well taken care of” and “I see a lot of kindness, I’ve seen a lot of good people… going through the system you know I’ve seen people maybe not skilled enough to do the job but kind enough to give a kiss and hug and I think that’s the one thing, I definitely …believe in people because I see what they do”
2. Relationship with the care partner Simple, yet profound, experiences with the care partner, gestures or words of gratitude, or a glimpse of the care partner’s momentary return to their former self, are enough to make the realities of caregiving worthwhile. “But my reward is the times that I go there and I walk in the door, I see him walking down the hall and I’ll go up to him and I’ll just call him and I say “How are you today?” and he’ll turn around to me and look at me like I know who you are and he comes over and gives me a hug and a kiss. That does it for me”
As caregiving becomes routine, some find themselves enjoying the change in relationship with the care partner. The additional time spent deepens bonds, allowing caregivers to better know their partner, particularly when smiles were offered, laughter ensued, and memories were created. “If I can get her to smile, my day is made” and “It’s just getting closer to my mom than I have been more so lately than the past 20, 30 years” and “I’m getting to know my mom better than I have in that respect and, you know, I think it’ll just be quality time with her now”
3. Relational supports: Family and friends Friends and family are important sources of practical and emotional support. Family members alleviate burden by taking on responsibilities of caregiving (managing finances, housework tasks and transportation) for the benefit of the care partner and primary caregiver. “My immediate family’s my biggest support. And they don’t get it like I do but they get me and they’re my normal, you know. If they can talk to me just about the good things, then it gives me the strength to carry on with all of this”
Spending time with friends and family can provide a sense of relief and normalcy. They offer companionship and support. Engaging with them in conversations and activities unrelated to caregiving provides an escape from caregiving responsibilities. “They remind me that there’s bright outside of the deterioration and the dying and the grieving. You know, I’ve lost my mom. In fact, she’s not the mom she was. So they’re … they remind me of the way our lives used to be before all this happened”
4. System supports/resources Caregivers need to take time for themselves and be alleviated from some of the responsibilities
4.1 Respite care, day program or long-term facilities Available respite services offer much needed help and are invaluable in providing momentary relief but caregivers are still responsible for the patients for the remainder of the day. “I have lots of help and everybody thinks I have a piece of cake, but my shift runs from three in the afternoon till eight in the morning and on Saturdays from 11:30 to eight the next morning. So even though you get all the support, it’s still not a piece of cake”
The role of a caregiver continues when the care partner is placed into a facility. Caregivers regularly visit to provide companionship, bringing home cooked meals, bathing the person, or helping with exercise. In some cases, staff shortages and HCP stigmatism of certain diseases may lead to caregivers performing the roles of facility staff for the safety and benefit of the person. “He’s now in the long term facility, but I still go and sort out … see what he needs and do a little bit of stuff for him because there are things that he needs that is not being addressed”
4.2 Healthcare and community-based programs Healthcare and community-based programs offer resources regarding education, yet system resources tend to focus on medical management of illnesses, and community resources on provision of supplementary services. The libraries and seminars organized by the health care system and community services disseminate valuable, user friendly information on the illness, its managements and coping strategies help patients and caregivers gain a better awareness and acceptance of the symptoms. “It was nice to hear some of the language of caregiving and what it means to people and how important it is to look after yourself and keep yourself on track”
The sessions can offer caregivers with a safe space to express fears, loneliness, and frustrations. The ability to finally verbalize the emotional, physical and cognitive toll of caregiving can release tension and facilitate the healing process. “The support groups have been the biggest help because you don’t feel alone and you feel like people actually care”
4.3 Medical supports Medical supports are irreplaceable regarding concerns from the person in care or caregiver. For many, a visit to a physician often marks the beginning of the caregiving journey. Physicians and allied healthcare professions can help by establishing a diagnosis, managing chronic conditions and advocating on behalf of the client and caregiver. Respite services, such as home care and day programs, give caregivers time to recharge, spend time with their family, and maintain employment. As the client’s condition deteriorates, however, caregivers may struggle to maintain the patient’s safety and quality of life. In these cases, long-term placements in facilities serve as last resort solutions that provide immense relief to caregivers
4.4 Distress Lines Distress lines available 24 h a day are helpful in supporting and providing referrals to those who are acutely overwhelmed with the responsibilities of caregiving
4.5 Non-profit associations Not for profit associations were noted by caregivers for:
 Reinforcing and supplementing healthcare services and offering personalized solutions, resource referrals and emotional support. They can offer more in depth discussion of the illness, the implications and the care options available, and tend to spend more time with patients, offering more personalized solutions. “I realized that the things that my wife was doing was not unusual. That I learned that other people were experiencing the same thing”
 Connecting caregivers with community and system resources offering invaluable support groups, which provide a safe space for caregivers to talk about their experiences with others who share similar experiences. During these meetings caregivers have the opportunity to verbalize their struggles, hopes and fears. “It is nice to know that when you are in these groups you are dealing with like-minded people who have the same problems”
 In addition, members of the group can offer emotional support, solutions and coping strategies. “I found the support groups just absolutely wonderful” and “I feel supported just by being able to have this community with other people and being able to share”
  1. HCPs health care professionals