Biomedical subjects

Robin A Ray

Publications and source records attributed to Robin A Ray.

3 recordsLinked to original sources

PubMed2006

Caregiver bodywork: family members' experiences of caring for a person with motor neurone disease.

AIM: This paper reports a study of how family members caring for people living with motor neurone disease managed the deteriorating body, their own bodywork and the associated emotional labour. BACKGROUND: People living with the neurodegenerative condition of motor neurone disease face the prospect of dying in 3-5 years from progressive loss of voluntary muscle mass and function, culminating in respiratory failure. Theories concerning the body in illness have been used to illustrate patient perspectives; however, family caregivers' experiences of the body have been neglected. METHOD: An ethnographic case study was undertaken with 18 primary family caregivers and six peripheral caregivers. Primary caregivers participated over 10 months in three face-to-face, semi-structured interviews which included mapping their support networks using ecomaps. Observational data were also recorded as field notes. Peripheral caregivers were interviewed once during the same time period. The data were generated between 2003 and 2004. FINDINGS: Informal caregiving requires engagement in various aspects of bodywork. Three body concepts were identified: the visible body--how the disease affected the patient and caregivers; the dependent body--the resulting care requirements; and the social body--how living with motor neurone disease affected their social support networks. The visible body is a continual reminder of the ravages of the disease, while the dependent body demands physical and emotional care. Social interactions decline over time, depriving family caregivers of the much needed support for sustaining their commitment to the bodywork required in caregiving. CONCLUSION: The demands of bodywork for family caregivers are increased by the continual presence of emotional labour as they seek to implement the best way to support their relative with motor neurone disease. Nurses and allied healthcare workers need to assess each family situation, asking appropriate questions to establish the most appropriate interventions to facilitate supportive care.

Adaptation, Psychological↗

PubMed2005

Who's there and who cares: age as an indicator of social support networks for caregivers among people living with motor neurone disease.

This paper explores the social support networks available to the informal carers of people living with motor neurone disease (MND). An ethnographic case study was undertaken using eco mapping, observation and conversational interviews to collect data from 18 primary carers of people living with MND. Interviews took place in participants' homes in metropolitan, regional and rural locations. Participants discussed the content of their support network and drew lines between individuals to indicate the type and strength of relationship. Changes to the network were depicted on eco maps during subsequent interviews. While health policy-makers assume that healthy social capital exists in Australian communities and that social cohesion will ensure active and available support networks in times of illness or disability, data from this exploratory study indicated that this was not consistently the case. Support networks varied in size and composition; however, age was identified as a discriminator of the availability and consistency of support. People in older age groups identified more diverse but consistent support systems while people in younger age groups reported more fluctuations in the strength of relationships and declines in support as caregiving became more demanding. Individual assessment of support networks at regular intervals in the caregiving trajectory is vital for all carers. However carers in younger age groups may need specific support to manage the psychological crises that occur and more access to paid care. Older carers may need consistent support to handle more of the instrumental aspects of care and assistance to mobilise their support networks. Community workers should be alert to the possible need for crisis intervention when tensions in relationships threaten carers' ability to provide effective care.

Age Factors↗

PubMed2005

Ecomapping: an innovative research tool for nurses.

AIM: This paper explores the use of ecomaps as a research tool for capturing data, using the example of the dynamic nature of social networks from which informal carers of people living with motor neurone disease draw their support. BACKGROUND: The need for social support in relation to health maintenance and disease management has been identified in the literature but little has been published about ways to investigate support networks. Existing discussion in the literature about the use of ecomaps as a clinical tool in social work creates a valuable framework for data collection which can be readily adapted by nurse researchers. METHOD: We used ecomaps as part of a repertoire of research tools to gather data about the social networks of carers of people living with motor neurone disease. Primary carers participated in three interviews and collaborated in ecomap construction over a period of 10 months during 2003. Analytical correlations were made between ecomaps and interview data. FINDINGS: Ecomaps provided a visual means of facilitating discussions around the structure and strength of networks. Being able to represent the social networks visually through ecomapping enabled people to identify each member of the network, examine the strength of each relationship and ascertain the sources of nurture and tension over time. Limitations to this type of data collection arise when participants try to quantify relationships that have been visually produced. CONCLUSION: Ecomapping is a valuable research tool because it provides visual representation of supportive care networks, capturing strategic data through symbols expressing relationships that may be inadequately portrayed in words. The ecomap incorporates the use of consistent symbols that standardize recipient responses, enabling data comparisons to be made.

Caregivers↗