Abstract
Fluctuations in positive and negative caregiving experiences remain only partially explained as the significant variability over time of potential predictive factors themselves is understudied. The current study aims to gain considerable insight into caregiving experiences and perceptions over time by using photovoice methodology to support semi-structured interviews. A case study, longitudinal design is taken with three female caregivers who provide detailed insight into their caregivers' experiences over a 12 month period. The interview transcripts were analyzed using IPA- Interpretative Phenomenological Analysis. This innovative combination of methods resulted in the emergence of three related themes which included consuming the role, feeling consumed by the role, and letting go of the role. The idiographic approach taken allowed both within case differences to be examined over time, and also between carer differences to be highlighted. Implications of illness type and its characteristics, and of attachment and relationship quality with the care recipient were seen in terms of how and when the caregivers moved between the themes identified. The use of others' support or respite care is examined vis-a vis caregiver's own beliefs, emotions, relationship attachment and motivations to care. Caregivers self-efficacy beliefs also shifted over time and were influential in caregiver experience as the care recipient condition or needs changed. No previous studies have found that negative caregiving consequences are, in part, under volitional control and yet our data on the underlying reasons for consuming caregiving or allowing themselves to consume, would suggest this may in part be true. This is important because it suggests that interventions to support caregivers should address relational and motivational factors more fully.
Highlights
Caregiving experience embraces both positive and negative experiences, (e.g., Rohr and Lang, 2014; Roth et al, 2015)
We have assigned pseudonyms to carers: Dawn aged 33, cared for her husband aged 54 for 3 years who had been diagnosed with frontotemporal dementia (FTD); Betty aged 57, cared for her mother aged 90, for 3 years who was a recovering stroke patient; and Susan, aged 64, supported her mother, aged 95, for 5 years who was diagnosed with dementia
For Betty the photographs highlighted tasks that she had to frequently complete and which consumed her at the first two interviews, such as cleaning the toilet, and of aids that helped her physically when she was unable to help and of means she introduced to her mother so she could keep her belongings tidier
Summary
Caregiving experience embraces both positive and negative experiences, (e.g., Rohr and Lang, 2014; Roth et al, 2015). Carers’ experiences of positive (e.g., satisfaction, fulfillment, purpose, and carer-recipient cohesiveness) or negative (strain, depression, and anxiety) caregiving outcomes can change over time (Silverberg-Koerner and Baete-Kenyon, 2007). Current carers, who advocate determination to provide care, report motivations to adopting and maintaining caregiving out of love, affection, guilt, obligation, and protection (Ribeiro and Paul, 2008; Williams et al, 2014), highlight a range of different emotional states. Few qualitative studies have followed carers’ experiences prospectively, once the caregiving role is adopted, failing to capture whether willingness and motivations to care are dynamic in nature and whether they are related to the experience of gains and losses. Our research aims to explore current caregiving and willingness to continue to provide care using several longitudinal caregiver case studies and using Interpretative Phenomenological Analysis (IPA). Our research will explore whether factors such as illness type, perceptions of stress, coping and self-efficacy determine perceived gains, caregiving ability and willingness to care in the future
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