Seeing the wood for the trees: Carer-related research and knowledge

Henwood M, Larkin M, Milne A


While research and evidence about carers is now extensive, it is generally fragmented, located in a variety of places and often difficult to access. For the first time, this scoping review pulled together all published carer-related knowledge between April 2016 and January 2017 and provides a unique, comprehensive and detailed mapping of what is known about carers and

The report highlighted some of the major issues and questions. These are:

  • carers are diverse and involve all sections and age groups of the population; people are likely to experience one or more periods of caregiving over the course of a lifetime;
  • there are both similarities and differences in the experiences of carers, but all caring takes place within a relationship, and each relationship is unique. Attention to both parties in a dyad is essential in understanding where interests are shared and where they diverge
  • knowledge about ‘hard to reach’ groups – notably Black and Minority Ethnic (BAME) and Lesbian Gay Bisexual and Transgender (LGBT) carers – remains relatively sparse. The profile of young carers has grown considerably in recent years, but they remain a small proportion of carers overall. Older carers (i.e. aged over 65) are of increasing importance in society, particularly in providing care for an elderly spouse or partner; such carers are the most heavily involved in caregiving but remain relatively invisible both in policy and research terms;
  • the impact of caring is multi-faceted and much of this is referred to within a ‘burden of care’ discourse that can be seen as pejorative, and which fails to take account of the simultaneous reported satisfactions of caring, or of the complexities and interdependencies within a caring relationship. How carers cope, and what strategies are effective in enabling them to do so are attracting increasing attention;
  • many carers face multiple and at times competing demands, not least those trying to balance caring responsibilities with other family demands and paid employment. The business case for increasing flexibility to accommodate working carers is increasingly recognised, but context specific strategies are required to do this;
  • much of the knowledge about carers and their circumstances relates to their characteristics, their lived experience and the nature and duration of their caregiving; relatively less is known about the effectiveness of interventions to support carers;
  • carer-related knowledge and evidence is complicated and nuanced and almost all the conclusions need to be seen within specific contexts and with caveats.