Caregiver stress in traumatic brain injury

Aims Many patients experience physical, behavioural, cognitive and emotional problems following traumatic brain injury (TBI). They may require continuing care for many years, most of which is provided by informal caregivers, such as spouses, parents, or other family members. The caregiving role is associated with a range of adverse effects including anxiety, depression, poor physical health and lowered quality of life. This article explores issues around caregiver stress; highlighting interventions for this group and areas for further research. Methods Literature exploring the impact of caregiving, its influencing and alleviating factors and interventions for caregivers of people with TBI is discussed, with brief critical analysis of key studies. Findings Research suggests that caregiver characteristics, coping strategies, their appraisal of the situation and social networks may be associated with the amount of distress experienced. Many caregivers have unmet needs such as respite care and information provision on TBI. Providing information may help to alleviate strain. Community-based family therapies providing education, support and counselling can help to decrease distress and improve aspects of family functioning, although evidence for these is lacking. Conclusions There is a need for more well-designed, controlled studies evaluating the impact of interventions to alleviate caregiver strain

Dysexecutive symptoms and carer strain following acquired brain injury: changes measured before and after holistic neuropsychological rehabilitation

BACKGROUND: Following acquired brain injury (ABI), deficits in executive functioning (EF) are common. As a result many brain-injured patients encounter problems in every-day functioning, and their families experience significant strain. Previous research has documented the benefits of cognitive rehabilitation for executive dysfunction, and rehabilitation programmes designed to ameliorate functional problems associated with ABI. OBJECTIVES: This study primarily aims to evaluate whether a neuropsychological rehabilitation programme reduces reported symptoms of everyday dysexecutive behaviour and carer strain. METHODS: In this study 66 ABI outpatients attended comprehensive holistic neuropsychological rehabilitation programme. A repeated-measures design was employed to determine the effect of rehabilitation on EF and carer strain, as part of a service evaluation. Outcome measures comprised the dysexecutive questionnaire (DEX/DEX-I) and carer strain index (CSI), applied pre- and post-rehabilitation. RESULTS: Results indicate rehabilitation benefited clients and carers in 5 of 6 DEX/DEX-I subscales, and 2 of 3 CSI subscales, (p<.05). An effect of aetiology on rehabilitation was found on the metacognitive scale of the DEX-I. CONCLUSIONS: Therefore, this study supports a comprehensive holistic neuropsychological rehabilitation programme as effective in reducing reported symptoms of dysexecutive behaviour and carer strain following ABI

Patterns of change and stability in caregiver burden and life satisfaction from 1 to 2 years after severe traumatic brain injury : a Norwegian longitudinal study

Objectives: To assess burden and life satisfaction in caregivers of patients with severe traumatic brain injury (sTBI) at 1 and 2 years post-injury, to examine if change in burden can be predicted by caregiver and patient demographics, patient’s functional status, caregiver’s social network or caregiver’s level of burden at 1 year. Design: Prospective national multicenter study. Self-report from caregivers, patient data collected from a national cohort study on patients with sTBI. Participants: 80 caregivers. Main outcome measure: The Caregiver Burden Scale (CBS), life satisfaction. Results: The total caregiver burden increased significantly between years 1 and 2 post-injury (p=0.04). Life Satisfaction was significantly lower at 2 years follow-up (p=0.03) than at 1 year. Thirty percent of the caregivers reported an increased burden, 55% were stable, and 15% had a decrease in burden between the two follow-up times. Logistic regression analyses revealed that experiencing loneliness was an independent predictor of increased burden from 1 to 2 years post-injury (OR=4.35, p<0.05). Conclusions: The results demonstrate a need for long-term follow-up of patients and caregivers that particularly focuses on professional support to relieve caregiver burden and risk of loneliness or social isolation. This group may benefit from additional follow-up interventions tailored to their needs

Understanding resilience in same-sex parented families: the work, love, play study

Background: While families headed by same-sex couples have achieved greater public visibility in recent years, there are still many challenges for these families in dealing with legal and community contexts that are not supportive of same-sex relationships. The Work, Love, Play study is a large longitudinal study of same-sex parents. It aims to investigate many facets of family life among this sample and examine how they change over time. The study focuses specifically on two key areas missing from the current literature: factors supporting resilience in same-sex parented families; and health and wellbeing outcomes for same-sex couples who undergo separation, including the negotiation of shared parenting arrangements post-separation. The current paper aims to provide a comprehensive overview of the design and methods of this longitudinal study and discuss its significance.Methods/Design: The Work, Love, Play study is a mixed design, three wave, longitudinal cohort study of same-sex attracted parents. The sample includes lesbian, gay, bisexual and transgender parents in Australia and New Zealand (including single parents within these categories) caring for any children under the age of 18 years. The study will be conducted over six years from 2008 to 2014. Quantitative data are to be collected via three on-line surveys in 2008, 2010 and 2012 from the cohort of parents recruited in Wave1. Qualitative data will be collected via interviews with purposively selected subsamples in 2012 and 2013. Data collection began in 2008 and 355 respondents to Wave One of the study have agreed to participate in future surveys. Work is currently underway to increase this sample size. The methods and survey instruments are described.Discussion: This study will make an important contribution to the existing research on same-sex parented families.Strengths of the study design include the longitudinal method, which will allow understanding of changes over time within internal family relationships and social supports. Further, the mixed method design enables triangulation of qualitative and quantitative data. A broad recruitment strategy has already enabled a large sample size with the inclusion of both gay men and lesbians.<br /

Grandparenting a child with a disability: An emotional rollercoaster

Objectives: As our knowledge about the experiences of grandparents when their grandchild has a disability is extremely limited, the purpose of this research was to explore the emotional journey of Australian grandparents. Method: This qualitative research utilised purposive sampling and semi-structured in-depth interviews to explore the experiences of 22 Australian grandparents, whose grandchild had been diagnosed with a disability. Results: Three key themes characterised grandparent’s emotional journey: Adjusting (the transition from anger to acceptance), The ‘Double Grief’ (sadness about what might have been for both their child and grandchild) and Pride in Family (pride in family’s ability to adjust to the challenges of the situation). Conclusion: As the first Australian study to explore the experiences of grandparents when their grandchild has a disability, the research provides important new knowledge about the emotional journey for grandparents. Unlike overseas research, Australian grandparents view themselves as being there to support their own children, rather than ‘holding the family together’. The findings will inform current policy debates about the role of grandparents and highlight the importance of support services that help facilitate grandparent’s role within their famil