Stigma Experienced by the Families of Individuals with Intellectual Disabilities – Development of FAMSI by Natasha Mitter

Individuals with intellectual disabilities are one of the most ostracised groups and face stigma, prejudice and significant obstacles that restrict their human rights (European Union Monitoring and Advocacy Programme, 2005). Often, people associated with the target individual are also subjected to stigmatisation, referred to as family stigma, courtesy stigma (Goffman, 1963) or associative stigma (Mehta & Farina, 1988). Related to these is the construct of affiliate stigma, which involves the internalisation of stigma by associates, such as family caregivers of individuals with intellectual disabilities

Research on the effects of affiliate stigma on families has been limited. This phenomenon warrants further exploration because families not only face the often challenging task of managing the physical needs of the person with intellectual disability, but they also have to cope with the emotional demands of caregiving, including the accompanying stigma of being undervalued by others. Moreover, there is no clear distinction between many of the terms used to describe the family’s experience of stigma, thus it is still unclear if families perceive stigma in the first place, and what may determine whether this is internalised. Further, poor measurement of these constructs has reduced the interpretability of existing findings.

Development of the FAMSI

Taking the aforementioned into account, this study aimed to:

1. Develop a psychometrically sound measure suited to addressing family stigma among family members of people with intellectual disability from diverse backgrounds.
2. Determine which carer and ‘cared for person’ characteristics predict levels of family stigma.
3. Examine the association between different aspects of family stigma and the following variables: subjective wellbeing, caregiver burden, positive meaning in caregiving, self-esteem and social support.
4. Based on the original Affiliate Stigma Scale developed by Mak and Cheung (2008), ten other scales relating to stigma and caregiving, and the existing literature on perceived family stigma and affiliate stigma, the Family Stigma Instrument (FAMSI) was initially constructed with a pool of 56 items addressing perceived family stigma, affiliate stigma and positive aspects of caregiving. Feedback on the draft items and format was sought from experts and caregivers in the intellectual disability. The FAMSI was then revised, piloted and a final 28-item version arrived at.

What we did

Family carers of people with intellectual disabilities were invited to complete the FAMSI via an internet survey. 407 family carers residing in the UK completed the survey; 79.4% of them were mothers and 91.6% identified themselves as primary caregivers.

Challenges

The sensitive nature of the experience of caregiving and stigma may have warranted face-to-face administration as a detailed explanation of the survey and an opportunity for family members completing the survey to allay their concerns regarding participation. Additionally, older carers, those living in more remote parts of the UK, and those from non-white ethnic backgrounds are less likely to use the internet.

Findings

Family carers, as expected, did perceive family stigma, whereby they were aware that individuals with intellectual disability and their family members often face negative perceptions from members of their communities and within wider society. Subsequently, some of them internalise such negative evaluations and develop affiliate stigma, which cam result, for example, in avoiding social occasion and withdrawing socially so as to avoid negative encounters. On this note, 65% of respondents perceived that family members of people with intellectual disability are at times excluded from social events, despite not necessarily encountering social exclusion themselves.

Carer, ‘Cared for Person’ Characteristics and Contextual Variables

The strongest predictor of affiliate stigma was perceived family stigma – being aware of stigma increases the likelihood that one later internalises it. Perceived family stigma was also most affected by the intensity of challenging behaviours displayed by the family member with intellectual disabilities. White respondents who were in the majority, showed higher levels of affective affiliate stigma and burden related to this. It is conceivable that White respondents were more willing to report shame and embarrassment arising from affiliate stigma. Respondents from Black and Minority Ethnic communities may have been less forthcoming about the stigma and burden they experience in giving care to a son, daughter or sibling with intellectual disability.

The cognitive dimension of affiliate stigma is affected by an awareness on the part of care givers that others view individuals with intellectual disabilities, and their family members unfavourably. For example, awareness of stigmatising glances from others may lead some carers to see themselves as less worthy or somehow flawed. Family carers’ level of awareness of negative attitudes and their self-evaluations can be affected by age and quality of life.

Caregiver burden predicted all aspects of affiliate stigma except the cognitive aspect. It was most strongly associated with affective affiliate stigma, suggesting that caregiver burden plays an important part in feelings of shame, despair and embarrassment that may result in an internalisation of stigma. As a result, interventions aimed at tackling affiliate stigma need to involve reducing the impact of caregiving burden experienced by family members of individuals with intellectual disability.

 What carers told us is important

Caregiving can be positive. It allows for the development of new identities and resilience in the face of adversity.

Stigma and negative reactions are experienced close to home, by family members, friends and professionals, and not just from wider society. This can lead families to withdraw from social occasions as well as professional service

Inadequate government funding places additional burden on families and is a key challenge for carers.

Stigma and negative reactions and the psychological impact of these can vary depending on a number of factors, including the social and political climate, amount of support available, financial stability, and individual factors for the carer and person cared for.

There is not enough research in this field to support the development of interventions that are helpful for family carers.

“I don’t think I ever laughed so hard, cried so many ‘happy’ tears or loved given me perspective and empathy as well as grey hair!”

Moving forwards

More longitudinal studies are needed to examine patterns and changes in family carer stigma over the longer term.

More recognition of the challenges faced by and protection for stigmatised caregivers needs to be reflected in legal and policy interventions. A first step would be to measure the inherent stigma in social structures and for this to inform policy frameworks.

Community engagement could support the translation of research findings into sustainable outcomes.

Final words

We have learnt that family members of individuals with intellectual disabilities are aware of, and at risk of internalising stigma themselves, with negative consequences for them and their lives. It is important to take into account sociodemographic, psychosocial and contextual factors when considering and understanding family carers’ experiences of stigma. This will help inform better support and interventions to alleviate the negative impact of family stigma.