Recommendations for Further Research

Research examining TBI caregivers in New Zealand is very limited. The current study’s aim was to look at coping in this population and how the strategies used related to symptoms of depression or anxiety and QoL. The results provide a number of findings, including novel ones, which need to be examined further.

Studies investigating caregivers have measured a variety of outcomes such as stress, burden, psychological distress, coping, QoL, life satisfaction, HRQoL and social support. Some of these concepts, such as coping, lack consistent definition and conceptualisation making them difficult to measure (Martz & Livneh, 2007). Even though coping has been shown to be an important part in dealing with stress, measurement of this construct is still weak (Chronister & Chan, 2006). According to Lim and Zebrack (2004), a more accurate operationalisation of coping is required, with a need to develop instruments that measure this construct more precisely. It is therefore necessary to develop coping measures that are psychometrically sounder and measure effectiveness as well as frequency of coping in specific situations such as TBI caregiving. Previous studies into coping have frequently reduced variables into one or two dimensions, for example, coping into emotion- versus problem-focused coping or overall QoL, which could have obscured potential relations between subscales and QoL domains. The use of two coping domains can potentially result in inaccurate generalisations (Martz & Livneh, 2007). Another problem with the two-type classification is that for example seeking social support can be sought for information (problem-focused) or emotional support (emotion-focused) (Ramjeet et al., 2008). The examinations of those subscales showed indeed several significant and novel findings in the current research. Future researchers should therefore focus on the examination of individual coping strategies and possible effects in providing further evidence in regards to these relationships. Understanding coping in TBI caregivers can be further improved with the assessment of cognitive mediators such as appraisal of control in stressful caregiving situations.

Measurement issues also apply to research into QoL. The WHOQOL-BREF used in the current study enables the researcher to investigate subjective QoL in various domains. Future studies would benefit from using standardised measures such as the

122 WHOQOL-BREF for this reason. In addition, researchers should refrain from using single questions to assess QoL, as these does not allow for a multidimensional assessment. The use of a standardised, multidimensional QoL measure would provide researchers with consistent and appropriate instruments. In addition, the use of identical measures in different TBI caregiving studies would enable comparisons across studies.

As the small sample size in the current study limits generalisability of the findings, a replication with a larger sample is required to improve the strength of evidence in clinical research. In addition, a larger sample would also allow for multivariate analyses, enabling to assess interactions between the examined variables. It cannot be ruled out that sample size was related to the finding that the majority of the significant correlations were weak and a larger sample might increase the strength.

Future research should also attempt to collect samples with even distributions of factors such as gender, age, ethnicity, severity of illness in order to assess their influence on the relationships between coping, psychological distress and QoL. In addition, future studies would benefit from collecting samples of a wider range of caregivers such as those not connected to support agencies in order to gather a more representative sample.

Longitudinal studies are required to get a better understanding of the long-term effects of TBI caregiving on coping, psychological distress, social support, and QoL. Studies using, for example, daily diaries can assess how or if coping in TBI caregivers changes over time and what strategies are being used at different points. This would be in line with the theory’s assumption that coping is a process (Lazarus, 1999). In addition, mood records, subjective assessments of QoL and records of quantity and satisfaction with social support would enable researchers to explore how the use of specific coping strategies at different times following injury is related to outcome. In addition, this would eliminate the reliance on retrieval of retrospective memory. However, as no preinjury information was available in the current research, doubly prospective studies are necessary to examine the impact of TBI on coping, psychological distress, and QoL.

The current study used questionnaires to assess coping, psychological distress and QoL in the participants, but additional information obtained through for example phone calls added valuable information that would have otherwise not been obtained. The use of more than one method within a study has been shown to give a more complete representation of a person’s experience and behaviour (Morse, 2003). Future research

123 could benefit from including qualitative assessments such as interviews to achieve a more complete understanding of caregiver coping, mood, and QoL. For example, psychological distress could initially be screened using a standardised measure such as the BDI-II and BAI, followed by a clinical assessment of those caregivers that showed any signs of psychological distress.

Finally, positive aspects of caregiving are evident in previous studies and not all caregivers experience their role as stressful, suggesting that outcome is not always negative. According to Folkman, Chesney, Collette, Boccellari, and Cooke (1996), caregivers who gain meaning from their role can remain more positive. As the majority of participants only had minimal or mild symptoms of psychological distress, it would be useful to examine the positive aspects of caregiving. In addition, investigation of coping strategies used by caregivers experiencing positive outcomes could lead to the development of interventions assisting TBI caregivers in coping with their role and limiting emotional distress.