Quality of Life

QoL in TBI caregivers has been given little attention in the literature so far, with only few studies conducted. Despite QoL being a multidimensional concept, the majority of studies used measures that did not reflect this, examining, for example, only psychological QoL or consisting of a single question (Kolakowsky-Hayner et al., 2001; Norup et al., 2009). In some cases, studies using the WHOQOL-BREF used a total

84 score rather than scores for the individual domains as recommended by the WHOQOL group (Chronister & Chan, 2006). For these reasons, any comparisons with previous results had to be made with caution.

That QoL was lower in caregivers than in the general public is consistent with previous findings (Hawthorne, Herrman, & Murphy, 2006; Hickey et al., 1997; Krägeloh et al., 2010; Lin et al., 2009; Moules & Chandler, 1999; New Zealand Guidelines Group, 2006; Norup et al., 2009; Shepherd et al., 2010). However, some researchers found life satisfaction to be similar to normative data in non-clinical samples (Ergh et al., 2003; Forsberg-Warleby et al., 2001; Kreutzer, Rapport et al., 2009). Possible explanation for the different findings could be that in some studies results were compared with a caregiving control group, while in others they were compared with a non-caregiving sample or national norms.

No other studies using the WHOQOL-BREF to examine QoL in all domains in the TBI caregiving population were found. QoL in the current sample in the physical, psychological, and environmental domains was mostly higher than in other caregiving populations, while social QoL was mostly lower (Alshubaili, Ohaeri, Awadalla, & Mabrouk, 2008; Chien et al., 2003; Hacialioglu, Ozer, Karabulutlu, Erdem, & Erci, 2010; Khalid & Kausar, 2008; Lo Coco et al., 2005). It is possible that cultural differences such as a higher living standard and better environmental conditions but lower social support through, for example, extended family than in countries such as Turkey, Taiwan, Kuwait, and Pakistan are the reason for these differences in findings.

Compared to New Zealand norms participants experienced lower QoL across all four domains (Krägeloh et al., 2010). However, the finding that the highest QoL was in the physical domain and the lowest in the social relationships domain differed from the general New Zealand public where environmental QoL was the highest and psychological QoL was the lowest. This difference could have been due to other variables such as sample size, age, gender, or ethnicity. However, as these were not examined in the current study, comparisons were not possible. Interestingly, the biggest differences in domains were in the environmental and social domains, which suggest that these areas were affected the most in the participants. However, the smallest difference was found in physical QoL indicating that the impact of caregiving on health related QoL was less evident. The current findings did however reflect the same pattern as reported in a New Zealand sample of caregivers caring for whanau with mental

85 illness, but was slightly higher across all domains (Shepherd et al., 2010). It is possible that the difference in sample sizes contributed to these differences.

According to the Informal Caregivers Literature Review carried out by the National Health Committee in New Zealand, the stress of caregiving affects physical health (Goodhead & McDonald, 2007). Physical QoL was found to be lower than in several other caregiving populations as well as in a New Zealand and Australian reference population, suggesting that TBI caregiving affects health more than other populations (Adams, 2003; Alptekin, Gonullu, Yucel, & Yaris, 2010; Hacialioglu et al., 2010; Hawthorne et al., 2006; Krägeloh et al., 2010). According to Koskinen (1998) out of 15 TBI relatives, nearly half suffered from a serious illness or injury in the 10 years following injury (Koskinen, 1998). Indeed 33% of the participants in the current study rated their health as fair or poor, with 69% stating that they had some worry about their physical health and more than half (53%) saying that their health has declined since their loved one received the brain injury. Comparison with similar age groups or older caregiving samples showed that the physical QoL of the current participants was more adversely affected (Adams, 2003; Hawthorne et al., 2006; Krägeloh et al., 2010).

It also has to be considered that the current sample was mainly female. There is some evidence that QoL is lower in female than in male caregivers (Argimon et al., 2004; Brouwer et al., 2004; Draper, Poulos, Poulos, & Ehrlich, 1995; Hagedoorn, Buunk, Kuijer, Wobbes, & Sanderman, 2000; Larson et al., 2008; Martinez-Martin et al., 2005), however other studies have found no gender difference (Forsberg-Warleby et al., 2001; Norup et al., 2009). In addition, the percentage of female participants was much higher than in the New Zealand norms, making a comparison difficult. However, because of the uneven participant distribution it was not possible to further investigate a gender difference.

The lowest QoL experienced by the participants was in the social domain. This could have been due to the amount of time that is spent caregiving, allowing the caregiver less time for social interaction. Loss of social contact with resulting loneliness and social isolation has been observed in caregivers (Goodhead & McDonald, 2007; Lezak, 1988; Romano, 1974). An Australian study measuring QoL in 22 stroke caregivers at discharge and one month later, found that scores for relationships and social companionship declined and that everyday emotional support decreased. Even though the decreases were not significant, it points to a tendency that these aspects of life are affected in caregivers (Adams, 2003). This is supported by findings into

86 caregiver burden in TBI, which have found increasing social isolation in caregivers (Kreutzer et al., 1992; Livingston & Brooks, 1988). Social QoL was lower than in most other caregiving studies examined, as well as in the reference populations (Adams, 2003; Alptekin et al., 2010; Hacialioglu et al., 2010; Hawthorne et al., 2006; Khalid & Kausar, 2008; Krägeloh et al., 2010). It was however higher than in New Zealand mental health caregivers (Shepherd et al., 2010). Studies have shown that the social characteristics of families of psychiatric patients were significantly related to the stigma attached to mental illness (Phelan, Bromet, & Link, 1998). This possibly contributed to low social QoL in mental health family caregivers.

Overall, it is possible that differences in QoL compared to other countries were due to cultural variations. However, a study of 114 caregivers of physically disabled elderly family members in Israel had similar results to the current findings across all WHOQOL-BREF domains (Iecovich, 2008). In addition, similar results were found in a German sample of stroke caregivers, with comparable levels of QoL in the physical and psychological domains, but lower QoL in the social and environmental domains (Wilz & Barskova, 2007). The differences are unlikely to be due to the instrument used. The WHOQOL-BREF has been developed across 15 international field centres, with culture specific versions, which allow for comparisons between different cultures (WHOQOL Group, 1998).

In summary, emotion-focused coping was used more than problem-focused coping, suggesting that TBI caregivers appraised stressful situations related to caregiving as threatening and uncontrollable more often than other caregivers did. One third experienced psychological distress, with levels higher than in most other caregiving populations. However, the majority of participants experienced only mild distress, suggesting that caregiving has a small impact on their psychological health. QoL was lower than in the general New Zealand public across all four domains.

9.4. Hypotheses