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Purpose Research and anecdotal clinical work indicate that complex post-traumatic stress disorder (CPTSD) in families that have children and adults who have a learning disability and/or are autistic may be prevalent. This paper aims to provide a preliminary formulation of complex trauma in families. Design/methodology/approach This report is based on a review of clinical psychotherapeutic work with six families. The themes are derived from the assessment period through examining the assessment reports and clinical supervision notes for thematic patterns. Findings This report suggests that the prevalence of CPTSD in families of people who have a learning disability and/or are autistic needs to be researched across the family lifecycle and that there are specific factors that mediate complex trauma symptomatology. Originality/value CPTSD symptomatology in these families is inadequately conceptualised and this is one of the first papers suggesting this as a potentially helpful framework to consider the experiences of families.

Purpose There is an established literature supporting the idea that families who have children and adults who have a learning disability and/or autism have a greater vulnerability to mental health problems or poor psychological health. There are shortcomings in this literature in that there is a little consideration of the impact the families interaction with services has on their well-being. It is argued that complex post-traumatic stress disorder (CPTSD), with its focus on prolonged chronic exposure to trauma experiences and the recognition that this can occur in adulthood, may well be an appropriate framework to enable a better understanding of the experiences of families. Design/methodology/approach A total of 214 family members completed a co-produced online survey in relation to potential traumatic events, impacts and support. Findings The experiences of family carers of children and adults with a learning disability and/or who are autistic would appear to be multi-layered and complex, with many experiencing a wide range of traumatic events with the associated emotional and personal sequela. The reported responses are consistent with CPTSD with 10% of having received a diagnosis of PTSD. Their experience was that the system failed not only to provide support but also created additional trauma. Practical implications A trauma-informed approach needs to be adopted by agencies and professionals that serve families to ensure they understand their potential contribution to the trauma families experience. Originality/value To the best of the authors’ knowledge, this is the first study that has attempted to examine the experience of families using the framework of CPTSD.

Purpose There remains a lack of clarity regarding what constitutes “normal” or “complicated” grief within this client group. The purpose of this paper is to identify the factors that complicate grief and considers interventions which would be beneficial. Design/methodology/approach The paper draws on previous research by the author and others to comment on some of the issues discussed by Hannah Young in her article. Findings Three domains contribute to complicated grief in people with learning disabilities. These are the learning disability itself, environmental factors and the impact of disability on attachment. Practical implications A relational approach to support is important in preventing complicated grief. If the grief becomes complicated, a relational psychotherapy is recommended as the preferable intervention. Originality/value This paper gives important consideration to practical factors that can lower vulnerability to complicated grief for this client group.

Accessible summary • Many people with learning disabilities are not well supported when someone close to them dies. • This can make it an even more difficult time than it needs to be. • This is about how staff can help people with learning disabilities when somebody close to them dies. It has some questions for them to think about. Summary It is well documented that the death of a family member can trigger a need for crisis intervention and cause symptoms of complicated grief for people with learning disabilities (Bonell-Pascual et al. 1999; Dodd et al. 2005; Emerson 1997; Kloeppel & Hollins 1989;MacHale & Carey 2002) This is in part because of the fact that there are often many hidden losses which company the death of a parent or close relative. When these go unrecognised the original grief is compounded and the person is more likely to have difficulties connected to their grief (Blackman 2003). The bereavement needs assessment tool (BNAT) has been developed to help professionals supporting a bereaved person with learning disabilities to make a comprehensive assessment at the point of bereavement (or even pre-bereavement) in order that concurrent losses are discovered and plans can be put into place as to how to attend to these. An assessment tool has been developed based on experience collected over a number of years of having supported grieving people with mild to moderate learning disabilities. A mixture of learning disability professionals (two psychologists and four learning disability nurses) working in three community teams have tried out the assessment tool and their comments will be used to further refine this tool. The aim of the assessment tool is to clarify the specific bereavement needs of an individual, enabling these to be met. The assessment tool consists of 10 main questions with sub questions. There is a focus on three areas of support: Practical issues – e.g. has this person’s ability to communicate with others been affected by this loss? Social issues – e.g. what impact has this death had on the person’s familial network? Emotional issues – e.g. does this person recognise their emotions and can they express them?

Just like everyone else, people with learning disabilities (PWLD) are living longer. This means that there are new considerations to be made by professionals and services working to support them. However, it is also important to remember that PWLD are a broad group of people with differing abilities and needs, and there are many different issues that need to be considered. These considerations are a challenge, which as a society we are only just beginning to recognise and respond to, despite having known that this situation was approaching for more than a decade. In this article I will probably raise more questions than I will answer, but recognising the issues is the first step towards developing a response.