7 things loved ones of trauma survivors need – according to research

What do the loved ones of trauma survivors need?

If you have been reading this blog for a while and you are a supporter, you probably have a list of needs. Maybe a long list. I know I do.

But who else is exploring the needs of loved ones of trauma survivors? What are those in the field of trauma and stress disorders finding – if anything? Is there any research on the topic?

What do the loved ones of trauma survivors need?

Last month, I featured an interview with Manuel Stadtmann, PhD, University of Z├╝rich. Dr Stadtmann and his team have published four studies focused on the daily life experiences of trauma survivors with a diagnosis of CPTSD. The team explored how trauma survivors managed symptoms outside of a clinical setting.

Most relevant to supporters is a unique study focused on the experiences of relatives* of those with CPTSD. The authors of the study write: “While previous research has examined the relationship between PTSD symptom severity and caregiver burden, this is the first study to gain insight into the social process of relatives providing support in symptom management for sufferers of CPTSD.”

[The study] aimed to understand their views, needs and experiences and possibly to build up a basis for family-oriented support.

Manuel Stadtmann. Mastering Life Together.

The study identified several needs of loved ones and drew conclusions based on the findings. While these conclusions may not be a surprise to you or me, the fact a research study is focused on relative/supporters of persons with CPTSD seems validating.

(Yes, this is only the beginning but I hope it is one step in opening the door to desperately needed discussions around the needs of families with the outcome being and hopefully, better understanding and resources for you.)


7 things loved ones of trauma survivors need – according to research

Information

Loved ones often seek information in the following areas:

  • CPTSD and its causes
  • The course or trajectory of the illness
  • Understanding reactivity in the context of the condition
  • Information on the course of treatment
  • Information on how CPTSD is affecting their own well-being

Involvement in the therapeutic or treatment processes

Unfortunately – and this has been my experience – loved ones often feel excluded from the treatment process. Some loved ones express a desire to know what the course of treatment is about and what to expect. For those expressing interest and with the permission of the trauma survivor, inclusion in ongoing discussions about treatment and the roles of loved ones could be beneficial.

Formal social support

Formal social support could help in so many ways. This support needs to be specific to CPTSD versus inclusion in groups with other types of mental health conditions. The provision of formal social support could do the following:

  • Alleviate feelings of isolation and stigma
  • Provide a place for loved ones to experience connection and community
  • Provide the opportunity for psychoeducation
  • A regularly scheduled time to focus on self
  • In addition, formal support might include awareness of potential triggering when hearing another’s story. Provision of mental health support for those who need it could be included.

Four more things loved ones need. . .

Skills to manage distress and daily life

The study described the stress for supporters of “. . .being under the constant state of living with the unpredictable condition.”

Prolonged support with a lack of coping strategies, difficulties in balancing one’s own needs with the needs to support and in pacing oneself led to a state described as “chronic burden”.

Mastering Life Together

Loved ones could well benefit from specific skills to manage their own distress in the face of another’s dysregulation as well as practical skills focused on management of day-to-day activities.

Guidance on specific topics

Some examples include:

  • How to best respond when a loved one is triggered
  • How to set boundaries around availability for supporting the person with CPTSD
  • How the diagnosis impacts one’s life as a supporter
  • How the diagnosis impacts the relationship
  • How to manage challenging emotions of caregiving

Time for activities and relationships

Loss of a sense of self is a common experience for loved ones. Many struggle to balance their own needs with the needs of the person with CPTSD and other responsibilities.

As one participant in the study shared:

It takes time being there, so I have less time for my other friends. I feel somehow alone.

Kei, 23

A broader support network including friends, adult children, or other family members could alleviate the caregiving burden on the primary supporter and create space for self-supportive activities.

Recognition of financial strain

Although not directly included as an area of need, the study referred to the financial strain.

Relatives may experience psychological distress due to a lack of supportive resources, for instance during times of financial stress.

Mastering Life Together

The value of unpaid caregiving and the subsequent financial strain is an under-recognized and under-valued area. As the study pointed out:

. . .the unpaid informal support provided by relatives makes a major contribution to the health and social service system, which would be very costly to replace with paid formal support.

Mastering Life Together

Conclusions

As I said, this study is just the beginning of a conversation around supporting loved ones. There are many diverse experiences of supporting someone with CPTSD and some may not struggle with overwhelm. However, for those who do, the recommendation is to implement a holistic model of care for those with CPTSD and their loved ones. I agree.

*The study states: “Relatives were defined as persons who are self-defined relatives, who may or may not be bound by blood, law, friendship and who had declared commitment, shared deep personal connections with the participant and provided various forms of support in times of need.”

To read the studies:

Symptom management in complex post-traumatic stress disorder (ICD-11), view and experience of their relatives: a mixed methods approach (Research Proposal)
Proposed ICD-11 complex posttraumatic stress disorder, characteristics and symptoms of adults in an inpatient psychiatric setting: A descriptive study
Why do I have to suffer? Symptom management, views and experiences of persons with a cPTSD: a grounded theory approach
Mastering life together – symptom management, views, and experiences of relatives of persons with CPTSD: a grounded theory study
*all studies are available for download at no cost


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