Table 2 Classification of responses to open questions ‘What did family/carers get and what did they want from mental health services’ according to seven core themes

1. Identify and acknowledge family and carers

15 6%^a

Acknowledge and welcome me to the ward.

Made me feel comfortable during visitation.

Listened.

5

2%

Be more compassionate and understanding.

Listened to the family more.

To have me as a carer involved.

2. Engage and communicate with family and carers.

25 10%

Keeping me informed. As a carer for my mum at a young age for a long time I wasn’t properly informed on what was going on or what she was going through, when this changed as I got older it helped a lot in me being able to provide care.

Ask me about his needs and routine. Talk to me about his progress.

Proactive communication.

32 14%

Better communications is essential.

Listen to me as his carer not ignore me.

Been more inclusive of family (sic) members & their information & opinions & had a professional discussion inclusive of the patient prior to discharge.

3. Involvement in planning/ collaboration in service user’s treatment

9

4%

With my dad (patient) s consent- involved the family in planning his care.

Have case conferences.

Included us in the patient’s health plans.

4

2%

Involved the family in treatment.

Respect and, information on discharge to manage person at home.

Very important for family to have input - family see the patient over the whole day, 7 days per week.

4. Assessment of vulnerable family member or carer’s needs

7

3%

Understanding the ways it affected me and asking important questions about my safety under her care.

Ask about my mental health, due to impact of caring role.

Looking out for the safety of me and my siblings.

9

4%

To look after me more. No one seemed to care about how my mother’s illnesses were impacting on me especially when I was a child.

Checked in with me regarding my own health and wellbeing.

Suggested services that might be helpful for my own health and wellbeing.

Care for how this was affecting me.

5. Provide or offer ongoing support to family and carers

66 27%

Got my younger brother and I to come in for an appointment with his psychologist when we were younger.

Given support to myself and my husband.

Respite care service if required

42 19%

Reassured me as a child that I wouldn’t be taken away just because she had problems, because overall, she wasn’t a bad mother.

More ongoing counselling services

help with supporting me to deal with my own emotions and heart ache when my child has episodes.

6. Provide psycho-education to family and carers

22 9%

Helped the family with how to respond to problems my mum

Communication re the diagnosis and treatment in simple english avoiding medical jargon.

Support services and they were very supportive of me as a parent and gave me lots of valuable advice to help me manage my son.

30 13%

More education and communication about the condition and how to care for her at home,

I would like to have met someone qualified so they could explain to me what is happening and what are my risks in the future for having a mental illness.

When talking in acronyms explain what it means and not in a rushed manner.

7. Provide or recommend referrals for family and carers

13 5%

Linked me in with support services so I had someone to talk to about the effects it was having on my mental health.

Ensured that I had support/respite and explained the next steps.

Helped me to help my son, find services.

12 5%

Providing links for other services available especially in finance.

More respite and help in accessing what help and services are on offer.

Offer referral for counselling.