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Publication - Report

Child and Adolescent Mental Health Services: inpatient report

Published: 10 Nov 2017

A report recommending improvements to respond better to the needs of children and young people with Learning Disability (LD) and/or autism.

347 page PDF

2.1 MB

347 page PDF

2.1 MB

Contents
Child and Adolescent Mental Health Services: inpatient report
A3.4 Interviews with families/carers

347 page PDF

2.1 MB

A3.4 Interviews with families/carers

Claire Edwards (working for 'Kindred') carried out face-to-face or telephone interviews with parents or carers who had agreed to be contacted when responding to the questionnaire sent via clinicians. The interviews were designed to provide an opportunity for parent/carers to build on their initial questionnaire responses, sharing their experiences and thoughts in greater depth.

An interview schedule (see Appendix 4.4) was used to guide the interviews, encouraging particular discussion of the following themes:

1. early experiences of mental health within the family

2. involvement of statutory and voluntary agencies outwith health

3. involvement of health agencies

4. inpatient care

5. experience or otherwise of specialist learning disability and autism spectrum disorder input

6. experience of treatment and care in settings at a distance from the family home (distance to be defined by the parent)

7. discharge processes

8. post discharge community support

Interviewees were informed of the purpose of the project as a whole and that the final report, which would include material from the interviews, had been commissioned by the Scottish Government. All interviewees requested a hard copy of the report once published.

Those who agreed to be interviewed were reassured that whilst direct quotes would be used within the report the speaker would not be identified beyond being a mother or father. All agreed that this was acceptable to them.

A3.4.1 Family Interview Schedule

Name of parent: Date:

Name of child: Age:

Setting the context for the questions

  • Reference to invitation in introductory letter sent via doctor/ NHS Board
  • Why we are asking for the information
  • What we will do with the information
  • Option to receive copy of the report

Background questions - acknowledging that some families have had to repeat their 'stories' many times and don't always find that helpful/can find distressing

  • Early experiences/diagnosis
  • What were the things you noticed that alerted you (or others) to potential concerns
  • Family circumstances (siblings/elderly parents etc.)

Social care

  • Do you have social work involvement? if yes -
  • An allocated social worker?
  • What services have you received?
  • Do these/did they meet your child and family's needs?
  • How involved did you feel in decisions about what services you would receive?
  • Do you receive Direct Payments or other funding under Self Directed Support?

Voluntary organisations

  • Have you received any support from a voluntary organisation? If yes -
  • How did you hear about it?
  • What support did you get?

Schooling/education

  • Experience and input/support from Educational Psychologist
  • Who else was involved? E.g. ASL co-ordinator
  • What/who else would have been helpful?

Involvement of any of the following?

- CAMHS

- LD team

- Community health service

- Any other health service

  • When involved?
  • What led you to seek involvement?
  • Any kind of mental health/behavioural interventions provided i.e. Intensive Behavioural Support
  • What was your understanding of the relationship between these services and school?
  • What did the school provide? Any increase in support?

Inpatient care

  • Has your child ever been admitted to hospital for mental health or behavioural reasons?
  • What were the circumstances which led to admission to inpatient care?
  • Was the admission as result of a 'crisis'?
  • If so, was this a planned or emergency admission?
  • Where was your child admitted and for how long?
  • What was your experience of inpatient care?
  • What could have prevented your child being admitted to inpatient care?
  • Was there a time when your child would have benefitted from an impatient admission but couldn't access one?
  • How did you cope?
  • If they were taken into a non-health setting e.g. respite what was the impact of this on them/your family?
  • Was there a delay in transfer to in-patient care? If yes, what did you understand to be the cause?
  • Was there a delay in discharge? If yes, what did you understand to be the cause?

Transfers to English or distant services:

Has your child ever been transferred to England or to a service away from your home? Is your child currently in England or away from home? If yes -

  • What would you define as 'distant'? How far away was it?
  • What impact did/does this distance/travel have on your family?
  • Hospital details
  • What rationale were you given for this setting being chosen?
  • Did you feel it was beneficial?
  • How specialist did you feel it was? e.g. autism specific?
  • What is the long term impact of this intervention?
  • Has any benefit being sustained?
  • What was/is the impact on your family of your child being cared for so far from home?
  • Any differences in the care your child received/is receiving in England?

Discharged from an English or distant setting

If your child has been discharged –

  • When was this?
  • What was the transition like out of inpatient care?
  • Were you confident about the care arrangements to be put in place?
  • What are the current arrangements?
  • What other support/services would have been helpful for you?
  • What did you hope for?
  • What was the reality?
  • What written information was provided for you? Was it helpful?

Anything else?

Any other aspect of the experience you need to share?

Would you like a copy of the report?

If you contacted Kindred directly, then we can send a copy of the final report to you directly.

Appendix 4.4.2 Approach to interviewing parents/families

Claire Edwards Training and Consultancy

Process:

Having reviewed collated questionnaires - themes will be identified that would feed into the development of the face-to-face/telephone interviews.

Aim of the interviews is to capture parents' experiences and this will probably be best achieved by inviting the parent(s) to tell me about their child and then their experiences.

In our prior discussion we will have identified issues/themes that want to hear about - should these not be addressed in the 'free flow' then I will pick these up towards the end and/or probe further if touched upon by parent.

Introduction:

I provide an outline of the purpose of the project -

  • why we are looking at this issue
  • who is involved in this project
  • how important family perspectives are to a full understanding of the issue(s)
  • what we are going to use the information for i.e. to inform models of delivery/service
  • having agreed to be interviewed i am using their questionnaire as a starting point and therefore they don't have to repeat information, however, I may ask more about an answer they have given
  • that I have some questions that I want answers and will use these to guide the interview
  • that I will be taking notes
  • the interview will take about an hour
  • it can be ended by the parent at any point
  • if they change their mind about being involved then my notes will be destroyed
  • they will be asked to complete a consent form

Confidentiality:

I will reassure interviewees that their responses and experiences will be anonymised including identifying details about their children and avoiding geographical location etc.

I share the way this information will be presented i.e. numbers of girls and boys, age range, numbers of single households, ages and gender of siblings, health boards included etc.

Processing of information:

  • Each parent interviewee will be given a code e.g. PA, PB etc.
  • Each theme/issue will be given an alpha numeric code e.g. 1 and each element within that theme will be coded a,b,c etc. e.g. 1c
  • Information/quotes will be mapped onto the identified themes
  • As the interviews progress other themes may emerge these will be coded as above
  • When reporting the information it will be coded - e.g. PA/1a,b/3c
  • Information that falls outwith the identified themes will also be reported

Report:

Examples of my reporting style can be viewed at www.cen.scot.nhs.uk but i can also tailor this to another preferred style.


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