Please find below details of a recent study which was funded by the NRH Foundation through the NRH Grant Scheme. Alison McCann is a Senior Occupational Therapist, and Department Head in the National Rehabilitation Hospital (NRH). Through her work in the NRH, Alison has extensive knowledge and experience of working with patients in a vegetative and minimally conscious state. Alison has presented the results of her study at International conferences since the completed work has been published.
Caring For People In Vegetative And Minimally Conscious States:
The Role Of Irish Family Caregivers.
*McCann A.E., ᶤStapleton T., *Delargy M.,
*National Rehabilitation Hospital, Rochestown Ave, Dun Laoghaire, Co. Dublin.
ᶤDiscipline of Occupational Therapy, School of Medicine, Trinity College Dublin.
The purpose of this study was to explore the lived experiences of informal caregivers of people with prolonged disorders of consciousness (PDOC) following severe acquired brain injury (ABI). The study aimed to explore the role of the informal caregiver and the impact of caregiving on time use, roles and occupational engagement patterns. Mixed methods were used to gather descriptive data over two phases. The Next of Kin of 20 patients admitted to the rehabilitation hospital between the years 2000 and 2013 completed a postal questionnaire. The majority of respondents were providing care in residential care units (residential caregivers). Their relatives had a severe brain injury and had survived in a vegetative of minimally conscious state for an average of 6.2 years. Almost half of the respondents had taken on caregiving in addition to working in paid employment. Eighty two percent of residential caregivers visited their relative daily or several times per week with visits ranging one to seven hours. Sensory stimulation was the most frequently carried out care task. Home caregivers (n=3) reported providing from between 75% to 100% of the necessary care for their relative with tasks ranging from personal care to advocacy. Seventy percent of all caregivers reported receiving some or a lot of preparation from the rehabilitation hospital to take on their caregiving role.
Four main themes emerged from the qualitative data obtained from ten interview participants in phase two of this Study.
- ‘Centrality of Caregiving’: caregiving was a central feature in the daily routines of all close family members.
- ‘Self as Secondary’: participants described placing the needs of others, particularly the care recipient ahead of their own needs. Caregiving impinged upon the participants’ self-care, work, social and leisure activities and occupational imbalance was described among the majority of participants.
- ‘Abandonment and isolation’: Participants described their wilful abandonment of previous social and leisure activity on adopting the caregiving role. Imposed abandonment was described with a lack of follow up and support from healthcare experts over the lifetime of the care recipient.
- The ‘constant caregiver’: Caregiving was seen as a relentless and life changing role and participants described feeling obliged to take on the care. Dealing with the ‘system’ and having to ‘fight’ for services were main causes of strain among caregivers.
The findings reflect the trend towards long-term residential care placement for severe acquired disability in Ireland. The amount of time spent engaged in caregiving among the sample was often in excess of national daily averages of informal caregiving (Central Statistics Office 2012). The findings of this study add to a small existing body of literature (Goudarzi et al., 2015) that specifies the informal caregiver role for people with PDOC, spanning practical and intimate care to financial management and decision making. Caregiving was often juggled with other roles including paid employment. The feeling of abandonment by formal care services was consistent with other studies of informal caregiving for people with PDOC (Giovannetti et al., 2015; Covelli et al., 2014). Caregiving for a relative with PDOC resulted in many hidden losses for the participants including loss of autonomy over time and loss of other meaningful occupations in their lives. The enduring nature of caregiving described in the current study impacted upon quality of life experiences and caregiver strain was experienced over prolonged periods of time.
Areas for further research highlighted by this study include an exploration of the hidden costs associated with long-term care provision for people with PDOC and a need for a longitudinal study of occupational adaptation amongst informal caregivers of people with PDOC. Implications of the findings for professional practice include the need for a comprehensive approach to training and preparation of informal caregivers to adopt and manage the caregiver role over the life time of the patient so as to assist with managing caregiver strain and expedite a move towards occupational balance.
Central Statistics Office (2012a) Census 2011- Profile-8: Our Bill of Health. Dublin: Stationary Office. http://www.cso.ie/en/census/census2011reports/census2011profile8ourbillofhealth-healthdisabilityandcarersinireland/. Accessed on: 10/01/2017.
Covelli V., Cerniauskaite M., Leonardi M., Sattin D., Raggi A. & Giovannetti A.M. (2014) A qualitative study on perceptions of changes reported by caregivers of patients in vegetative and minimally conscious state: The “Time Gap Experience”. The Scientific World Journal. Volume 2014, Article ID 657321, 9 pages. http://dx.doi.org/10.1155/2014/657321. Accessed on: 17/01/2017.
Giovannetti A.M., Cerniauskaite M., Leonardi M., Sattin D. & Covelli V. (2015) Informal caregivers of patients with disorders of consciousness: Experience of ambiguous loss. Brain Injury. 29(4): 473-480.
Goudarzi F., Abedi H., Zarea K. & Ahmadi F. (2015) Multiple victims: The result of caring patients in vegetative state. Iran Red Crescent Med J. 17(6): e23571: 1-7. DOI: 10.5812/ircmj.23571. Accessed on 10/01/2017.