Metaphors of Aging with HIV: Shadows and Sunshine Rosanne Beuthin, RN, PhD(c); Laurene Sheilds, RN, PhD; Anne Bruce, RN, PhD University of Victoria, School of Nursing
Aim To explore a new area of concern Aging with HIV: what nurses might learn from metaphors embedded in stories of older adults living with HIV.
Findings Metaphors impact how we perceive the world and ourselves in it, in the present moment and into the next. Metaphors may inspire and generate or hurt and mislead.
Methods Narrative inquiry case centred approach (Riessman, 2008) Purposeful convenience sample Five semi structured, in-depth interviews/participant over 3 ½ years Audio recorded and transcribed verbatim for a total of 23 transcripts Narrative analysis, coding metaphors (individual and across the whole)
Participants 5 Caucasian, urban participants, age 50 or older, living HIV+ > 10 years At final interview, participants’ age range 55 - 62 years (average 58 years) and time since diagnosis range 13 - 24 years (average 17.6 years)
metaphor An analogy between 2 things Small personal stories Social constructions with powerful influence: ability to shape, constrain, expose, liberate or illuminate how one experiences HIV and their own person
Knowledge Translation • • •
CGNA conference May 2013 Manuscript for publication Inspire Net poster Sept 2013
INDIVIDUAL METAPHORS: Candle flame dancing to life’s music Yo-yo of life lessons Rainbow, confetti and tea cakes Roller coaster ride, face to the wind Lab mouse on a running wheel OVERALL METAPHOR: The experience of aging with HIV is SHADOWS and SUNSHINE: to live in between dark places and times infused with light. SHADOWS: Loss of innocence. Tightness. A backpack I cannot put down. Fear and panic, to face pity, ignorance. Stigma: walls go up, make everything bigger than the earth. Pain buried in a deep dark place. Humiliation. The naughty disease, the dirty disease. Secrets, little pieces of information that own me. A lonely place. Cut off from sexual relationships. Threat of being called a criminal. Fatigue. A bug in my blood trying to kill me. A numbers game, up and down, on edge. To strike a bargain, you take harsh chemicals. To play the hand you are dealt. A new level of poverty. Dancing as fast as I can. A black wall of depression; a horrible dark place that makes me a leper on the precipice.
SUNSHINE: Survivor energy and love. Abundant life lessons, global compassion. A phoenix rising from the ashes. A cocktail of hope, the pills are a life raft. The smaller part of my life. Lucky. A blessing, a gift. A sense of purpose. To find a place where I belong, am safe and needed. To tell my story, like cleaning out a closet. To be the face of HIV. To take the mask off. No more secrets. To volunteer, to give back. To come out of the closet to everyone. Freedom to be honest. To be a mentor, a substitute father figure, an uncle, a sage, a societal elder, a gay grandpa. A third act. To age gracefully, to be eccentric. To feel a part of the mix, to feel settled, to be a long time survivor. On a life journey, reinventing myself. Bonus years. A time of beauty; years of experience and knowledge take me forward.
Conclusions Persons aging with HIV use metaphors when storying their experience. The metaphors reveal a complex reality and support sense making in the moment and over time. This sense making helps persons with HIV to cope and adapt as best they can. Nurses need intention and to act by: -Creating space for stories -Listening and engaging -Having shared conversations -Making a relational connection