Dear Editor:
While some research shows satisfaction with the family caregiving experience, caregiving demands have also been found to leave family caregivers anxious, exhausted, and burdened. Despite the current support for family caregivers from the hospice team, one third report moderate or severe anxiety1 and 26% to 57% report being depressed.2 While traditional support groups are often suggested to caregivers, isolated home hospice caregivers have barriers preventing participation, as caregiving needs often prevent them feeling comfortable leaving their loved ones.
Social media platforms offer an opportunity to support those who have common experiences. While evidence for social media use in the hospice setting is limited, two small studies have explored the feasibility and usefulness of social media interventions in this environment, although caregivers in neither study were in the midst of caregiving.3,4 Given the demands faced by caregivers, as well as the stress of the caregiving experience, we wanted to know if caregivers would be able and willing to participate in a social network community while providing care.
The Facebook platform allows the creation of groups, which the group administrator designates as open, closed, or secret. Secret groups are not searchable, and only members authorized by the administrator can see posts. After receiving approval from the institutional review board, social workers from a hospice program were asked to refer individuals they felt would be interested in participating in a secret Facebook group. We contacted five individuals and three agreed to enroll in a six-week feasibility study. Posts, likes, and comments were archived for data analysis.
Participants, ages 52 to 56, were female. Two participants were caring for their husbands and one for her mother. The group was very active and we were asked to extend the group to nine weeks at which time two of the hospice patients had died. Members actively shared thoughts and caregiving experiences in 120 posts, 330 comments, and 132 likes. All members participated; however, one was the more active, originating posts daily. Posts and comments included reports on the conditions of the patients, emotions, words of encouragement, coping strategies, and messages of affection. Examples appear in Table 1.
Table 1.
Examples of Posts/Comments
| Theme | Examples |
|---|---|
| Condition of patient | Some days are better of course but the toughest is when he's gasping for air and having an anxiety attack.…I find myself trying to breath for him. I give him his anxiety pill, start a breathing treatment, then sit with him—hold his hand and start praying out loud. It helps keep him calmed down and whenever he looks at me I try hard to have a big smile on my face no matter how terrified I am. |
| Emotions of the caregivers | People would do more but he only wants me to do things for him, and I get that we have been best friends for 22 years. I am just so emotional and was dealing with this much better until a few days ago. I just can't bear watching him die and there is nothing I can do about it. |
| Encouraging remarks to one another | We know and understand your stress and know we are here for you. You are not alone even though it may feel like it. Take advantage of us because it will help with the stress, we promise. |
| Messages of affection | We're there with you and we feel your pain. Give Mom a little hug and kiss from us and tell her we love her. Thanks for being such a GREAT daughter as well as a GREAT caregiver. |
| Strategies for coping | Sometimes meditation helps especially when you can't get out of the house. I usually light a candle, but can't do that when the oxygen is on. I close my eyes and slowly take deep breaths and count to 4. Breathe in…1 2 3 4 and out…1 2 3 4.…Also, you can journal if you like to write or type. Write all your worries down, then tear the paper into little pieces. |
Facebook offers promise as a way to provide group support to family caregivers who are actively caring for a hospice patient and unable to attend traditional groups. While the frequency of posts declined while their loved one was actively dying, they continued to participate, reading encouraging words posted by the others and posting updates. They accessed the group support at all hours of the day and night as was convenient or necessary for their personal schedule.
While this small group experience can't be generalized, it does indicate the potential for this platform in the hospice setting. Similarly to traditional support groups, these active caregivers formed a community during a very stressful period, gave and received support from one another, and found value in this experience. Hospices may want to explore the use of this option as another tool to manage complicated caseloads on ever limited resources.
References
- 1.Washington K, Pike K, Kruse R, Oliver DP: Anxiety among informal hospice caregivers: An exploratory study. Palliat Support Care 2014. [E-pub ahead of print.] [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2.Parker Oliver D, Albright D, Washington K, et al.: Hospice caregiver depression: The evidence surrounding the greatest pain of all. J Soc Work End Life Palliat Care 2013;9:256–271 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Buis L: Emotional and informational support messages in an online hospice support community. CIN Plus 2008;26:358–367 [DOI] [PubMed] [Google Scholar]
- 4.Oliver DP, Washington K, Gage A, et al. : Lessons learned from a secret Facebook group. Health Soc Work 2014. [E-pub ahead of print.] [DOI] [PubMed] [Google Scholar]