A rainbow of differences: Variation in caregiving experiences by LGBT status

While caregiving occurs in many different ways, there is a view that caregiving shares common features irrespective of the caregiver.

For example, recent research* reveals that a caregiver’s sociodemographic features and relationship to the care recipient, influences the health-related outcomes of emotional stress, work, finance, caregiver healthcare and concerns of the future.  Moreover, providing unpaid assistance to another individual with a serious health condition increases the risk of physical and mental health problems and financial strain on the caregiver.

Is this assumption of commonality well founded? Are the caregiving experiences of heterosexual and LGBT caregivers the same or unique?

According to US epidemiological research, LGBT individuals are overrepresented among the population of informal caregivers. More than one in three LGBT adults identify as an informal caregiver, compared to one in six adults from the general population. However, previously large-scale studies have mostly excluded questions regarding sexual orientation and gender identity and/or were limited in sampling design. In order to unearth the largely unknown experiences and specifically health-related outcomes of LGBT caregivers relative to their non-LGBT equivalents, Dr Boehmer, Associate Professor of Social & Behavioural Sciences at Boston University School of Public Health, Dr Clark, Dr Heeren, Ms Showalter and Dr Fredman analysed the 2014 U.S National Alliance for Caregiving survey data.

Ultimately, the research concluded that the experiences of LGBT and heterosexual caregivers are different; in particular, LGBT caregivers are more likely to report financial strain. In addition, the demographic profile of caregivers differs, with LGBT caregivers more likely to be younger and female. These findings have implications for organisational policies and practices, which treat caregivers as a homogeneous group.

Aim:

The aim of the research was to explore whether, in a representative US caregiver sample, caregiving experiences and their health-related outcomes varied by sexual orientation and gender identification.

Methodology:

A secondary data analysis was conducted on the cross-sectional and nationally representative 2014 US National Alliance for Caregiving online. “Caregivers” were determined as individuals providing unpaid care, including assistance with personal or household requirements, management of a person’s finances or arrangement for external services. The researchers hypothesized, that in comparison with non-LGBT caregivers, LGBT caregivers would be subject to worse outcomes. For the current study, the sample was limited to respondents who were between the ages of 21 and 80 years old and had a valid response to the LGBT status question i.e. whether they identified as lesbian, gay, bisexual or transgender. As a result, the analytic sample for this study comprised of 1199 caregivers in total.

Three levels of analysis of the data to obtain insights:

Outcome Measures:

Four measures of caregivers’ health, stress, and strain were included. Caregivers were asked to rate physical strain, emotional stress, financial strain on a 5-point Likert scale (from Not at All to Very Much) and categorise self-reported health as “fair or poor” versus “good or better” health.

Standardised questions helped determine demographic information of caregivers and the care recipients including questions on sex, age, race/ethnicity, education, marital status, size of household, and residence in a rural area, annual income, employment and number of hours employed. Caregivers also reported on characteristics of the care recipient’s circumstances and caregiving duration and intensity.

Key Findings:

Overall, the study found that LGBT and non-LGBT caregiver groups differed demographically and when compared to non-LGBT caregivers, LGBT caregivers reported significantly more financial strain due to caregiving. However, in other outcomes in bivariate analyses, these two caregiver groups did not differ significantly. Specifically, the findings were categorised as follows:

Demographics:
  1. LGBT caregivers were significantly younger in age, more likely to have low socioeconomic status, racially and ethnically diverse (16% reported as black and 29% as Hispanic, compared with 12% and 16% in non-LGBT counterparts) and less likely to be married.
  2. Significant gender differences such that LGBT caregivers were equally likely to be women or men compared to 60% of non-LGBT caregivers were women. LGBT and non-LGBT caregivers reported similar results on other characteristics.
  3. Primary caregivers of a care recipient aged 18 or older were significantly more likely to be LGBT than non-LGBT. However, these two groups did not have differences on other measures of caregiving tasks i.e. communicating with healthcare professionals and nursing tasks, or the intensity of those tasks.
  4. Care recipients of LGBT caregivers had significantly more health conditions than those of non-LGBT caregivers.
Health-related outcomes:
  1. Compared to non-LGBT caregivers, LGBT counterparts reported significantly more financial strain due to caregiving (52% vs. 38%). LGBT caregivers continued to be significantly more likely to report financial strain than non-LGBT caregivers, even after adjustment of significant confounders.
  2. Approximately 50% of all respondents of the survey reported physical strain, as a result of caregiving.
  3. Although not statistically significant, LGBT caregivers were more likely to report emotional stress and being in fair or poor health in comparison with non-LGBT counterparts. Also not statistically significant, employed LGBT individuals were more likely to report poor health and LGBT caregivers with some level of college education and LGBT caregivers with no choice on becoming a caregiver were less likely to report poor health. These findings, while not statistically significant, are still of interest as non-LGBT caregivers results showed reversed associations between these characteristics and self-reported health. These reversed associations suggest employed non-LGBT caregivers were less likely to report poor health and non-LGBT caregivers with some level of college education and non-LGBT with no choice on become a caregiver were more likely to report poor health.

Implications:

With an aging population, the demand for unpaid caregivers is increasing. This study highlights the differences of experiences and health-related outcomes that exist for LGBT caregivers in contrast to non-LGBT caregivers and plays an important role in contributing to the understanding of caregiving and caregiver needs.

The small number of LGBT caregivers in the sample limited the current study. This also prevented researchers accounting for multiple testing and performing supplementary analyses such as

  • addressing intersectionality
  • LGBT subgroup comparisons by gender
  • age or relationship to care recipient;

Which consequently limited the ability to make comparisons with previous LGBT caregiver studies. The limited sample size also played an effect in observing non-significant associations for poor health and emotional stress despite finding moderate-sized odds ratios i.e. these associations should be significant. While this study has limitations, it demonstrates the potential for more detailed studies within the LGBT and caregiving space to better understand LGBT caregivers’ needs. This would enable policy makers, service providers and organisations to provide better support and care to caregivers.

For more information, contact Grace Ling – gling@deloitte.com.au

To read the full article, see Boehmer, U., Clark, M., Heeren, T., Showalter, E. and Fredman, L. 2018, ‘Differences in Caregiving Outcomes and Experiences by Sexual Orientation and Gender Identity’, LGBT Health, vol. 5, no. 2, pp. 112-120

 

*References:

  1. Li QP, Mak YW, Loke AY: Spouses’ experience of caregiving for cancer patients: A literature review. Int Nurs Rev 2013; 60:178–187.
  2. Pinquart M, So¨rensen S: Correlates of physical health of informal caregivers: A meta-analysis. J Gerontol B Psychol Sci Soc Sci 2007; 62:P126–P137.
  3. Hanratty B, Holland P, Jacoby A, Whitehead M: Financial stress and strain associated with terminal cancer—A review of the evidence. Palliat Med 2007; 21:595–607.

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