Table 2 Summary of themes

Theme 1:

Recognising and understanding their relative’s perinatal mental illness was important to make sense of the situation

What’s happening to them? Changes in their relative’s behaviour and mood were distinct and often upsetting

Family members identified several signs and behavioural changes in their relatives including being irritable, low in mood, or withdrawn. Experiences of their own mental health struggles helped them recognise their relative was struggling.

Why is this happening? Making sense of what contributed to their relative’s mental illness

Contributing and causal factors identified included physical, lifestyle, cultural and circumstantial factors.

Wider family networks can be helpful but are often uninvolved

Extended family and friends that were aware of their relative’s mental health problems were a source of support. Some had no understanding, and mental health was not spoken about or supported, often due to their cultural understandings.

Theme 2:

High emotional cost of supporting a relative with perinatal mental illness

Taking on a varied caregiver role is essential for family functioning

Family members gave both emotional and practical support to their relative, and children.

Supporting a relative often had a negative impact on own well-being

Their relative’s illness often had a negative impact on their own physical and mental health and wellbeing, and the relationship with their relative.

Family is important in accessing mental health services

Families encouraged their relatives to get professional support, including therapy and medication. Their own views of treatment impacted the way they supported their relative to access care.

Theme 3:

Varied experiences and expectations of services, with opportunities for improvement

Barriers to accessing support and different expectations from families

Expectations varied, with some concerns about mother and baby units, which did not come into fruition. Barriers that prevented or delayed getting professional support were identified, several related to culture and ethnicity.

Family support and involvement with services was mixed

Staff were understanding and open about the impact mental illness can have on the wider family, but more could have been done to support families. Most felt involved, and felt that their opinions were acknowledged, but some felt uncomfortable at appointments and their views were not taken into consideration.

Importance of good communication with services

Communication from perinatal services was mostly good, and services provided updates and adequate information. At times communication and reliability was poor and unresponsive.