Caring for a child with autism: A practical guide for parents

book review

Happiness and Well-Being of Young Carers: Extent, Nature and Correlates of Caring Among 10 and 11 Year Old School Children

Young carers often take on practical and/or emotional caring responsibilities that would normally be expected of an adult. For many of these children and young people, caring has been shown to have a detrimental effect on their lives. For example, caring at a young age appears to be associated with poor health and well-being, bullying and poorer educational outcomes. However, previous research has tended to be retrospective, carried out using small surveys of secondary school-aged children or to use qualitative methods with young people associated with caring projects. In contrast, little is known about the extent and nature of caring undertaken by younger children. This paper reports findings from a random sample survey of 10 and 11 year old children in the final year of their primary school education. 4,192 children completed the Kids’ Life and Times (KLT) online survey in 2011. Twelve percent of respondents to KLT said they helped look after someone in their household who was sick, elderly or disabled. Supporting previous qualitative research, this survey showed that children who were carers had poorer health and well-being, reported less happiness with their lives, were more likely to be bullied at school and had poorer educational aspirations and outcomes than their peers who were not carers. These findings suggest that teachers need to discuss the issue of caring with children in the classroom in a general and supportive way so that young carers feel able to confide in them and seek support if they need it.

“It’s like a problem that doesn’t exist”: The emotional well-being of mothers caring for a child with brain injury.

Background: Although research has shown that significant burden and adverse psychological impact are associated with caring for a child with brain injury, limited knowledge exists concerning the qualitative experience and impact of this burden.
Objective: To provide an account of the experiences of mothers who care for a childhood survivor of brain injury.
Research design: Postal survey.
Methods and procedures: A self-report questionnaire was sent to a consecutive sample of mothers (n=86) of children (aged 8-28) with acquired brain injury, registered with a UK children’s brain injury charity. Five essay style questions enabled mothers to reflect on and describe at length their caring experiences, with particular emphasis placed on the perceived impact on emotional well-being.
Main outcomes and results: Thematic analysis identified five key themes: Perpetually Anxious, The Guilty Carer, The Labour of Caring, A Self-Conscious Apologist and Perpetually Grieving. Collectively, these themes highlight two core processes shaping mothers’ caring experiences and concomitant mental well-being. Firstly, the collective and enduring nature of caregiver burden over time. Second, the crucial role played by socio-cultural values in perpetuating caregiver burden.
Conclusions: Societal norms, particularly those relating to the nature and outcome of brain injury and motherhood, serve to marginalise mothers and increase feelings of isolation. Findings suggest the value of peer support programs as an effective means of providing appropriate social support.

Stress processes in caring for an end-of-life family member:Application of a theoretical model

Objectives: Family caregivers play a vital role in maintaining the lives of individuals with advanced illness living in the community. However, the responsibility of caregiving for an end-of-life family member can have profound consequences on the psychological, physical and financial well-being of the caregiver. While the literature has identified caregiver stress or strain as a complex process with multiple contributing factors, few comprehensive studies exist. This study examined a wide range of theory-driven variables contributing to family caregiver stress. Method: Data variables from interviews with primary family caregivers were mapped onto the factors within the Stress Process Model theoretical framework. A hierarchical multiple linear regression analysis was used to determine the strongest predictors of caregiver strain as measured by a validated composite index, the Caregiver Strain Index. Results: The study included 132 family caregivers across south-central/western Ontario, Canada. About half of these caregivers experienced high strain, the extent of which was predicted by lower perceived program accessibility, lower functional social support, greater weekly amount of time caregivers committed to the care recipient, younger caregiver age and poorer caregiver self-perceived health. Conclusion: This study examined the influence of a multitude of factors in the Stress Process Model on family caregiver strain, finding stress to be a multidimensional construct. Perceived program accessibility was the strongest predictor of caregiver strain, more so than intensity of care, highlighting the importance of the availability of community resources to support the family caregiving role.

Knowledge and perceived competence among nurses caring for the dying in long-term care homes

Background: The quality of care provided to dying long-term care (LTC) residents is often inadequate, which may be due to the lack of formal training that LTC staff receive in palliative care (PC). This cross-sectional study assessed PC knowledge and self-efficacy in ability to provide PC in a sample of registered nurses working in LTC homes. Method: A survey was conducted in four LTC homes in October 2009 to June 2010. Nursing staff knowledge of PC was evaluated using the Palliative Care Quiz for Nurses (PCQN). The Self-Efficacy in End-of-Life Care Survey (S-EOLC) was used to measure nursing staff confidence in their ability to provide PC. Findings: Close to 60% of the nursing staff participated (69 of 119). The participants did not score highly on the PCQN: the average correct score ranged from 52.50% to 63.41% across the homes. There were no significant differences between the homes for the mean number of correct responses on the PCQN (P=0.329) or mean scores for the three S-EOLC subscales. Rank ordering of the percentage of correct PCQN answers by item and LTC home demonstrated that similar misconceptions were held across homes. Conclusion: Despite their confidence in PC practice, the participants' PC knowledge gap reveals a need for PC training for staff working in LTC homes. The PC education and training provided should both include a gerontological perspective and address the expertise and knowledge already held by staff.

How well do family caregivers cope after caring for a relative with advanced disease and how can health professionals enhance their support?

Support for families during a person's advanced disease and also into the bereavement period is a major component of palliative care. However, because of the gaps in bereavement research in this area, there is a lack of evidence-based direction for health professionals.