AICAFMHA:
promoting mental health for young Australians
Australian Infant, Child, Adolescent and Family Mental Health Association Ltd
ABN 87 093 479 022
Crossing Bridges: a joint CAMHS and adult mental health service
research project to investigate the mental health of children of parents who are
registered with an area mental health service
* Cowling, V., *Luk, E.., **Mileshkin, C., and *Birleson, P.
* Maroondah Hospital Child and Adolescent Mental Health Service
** Maroondah Hospital Area Mental Health Service
Summary
Introduction
Methodology
Project Management and Implementation
Responses to the survey
Discussion
Recommendations
Acknowledgements and references
This paper describes the methodology involved in the implementation of a research project within an adult mental health setting which examined the psychiatric problems of the dependent children of adult clients, the services they received and barriers to service utilisation. The paper describes the process involved and difficulties encountered in implementing this study. Increasingly CAMHS and adult mental health services will need to work closely to provide coordinated services and conduct further research concerning children of parents with mental illness and their families. Research methodologies need to accommodate the fear parents have that their children will be removed and the demands on Case Managers. Consultative processes with both of these key stakeholder groups are needed from the funding submission stage, and it is recommended that formal partnerships be developed to facilitate the implementation of projects such as the one conducted here.
With policies of community care and deinstitutionalisation more adults with a mental illness are living in the community and caring for their children[1]. However, data is not routinely collected concerning the number of adult psychiatric patients who have dependent children, and little is known about the mental health status of those children. In Australia, only broad estimates can be made based on the number of 20-45 year old women, on the incidence and age of onset of schizophrenia and affective disorder, and from published figures on the proportion of such women who have children [2]. This gives a minimum estimate of 27,000 children, with upper limits unknown [3].
The lack of data is not unique to Australia. Wang & Goldschmidt report that there
are no epidemiological studies of a population of psychiatric patients and their children
in Denmark [4] and a similar situation occurs in the U.K. [5,6] As in Australia, national
statistics do not exist for the U.S., although estimates made for the state of New York
identified that 22% of all Intensive Case Management clients had children [7]. An earlier
review of case records in a private U.S. clinic found that only 44% of charts of seriously
mentally ill mothers recorded whether the patients had children [8].
Back to top
Increase risk of mental health problems
Half of the children of parents with mental illness can be expected to experience a broad range of psychological, social and educational problems [9], which are the result of increased genetic and environmental risk factors. There is an increased risk of psychotic disorder itself, as the lifetime prevalence for first-degree relatives is 5%-14% [10]. Environmental risks arise from the poverty, family discord and disorganization experienced by many families, and from the disruption in a child's schooling and care due to repeated admissions of the parent to hospital [11]. The effects of parental psychopathology and social deprivation on children are difficult to separate and probably synergistic. Rutter and Quinton [12] found that the risks for children tended to come not from the illness but from the amount of family discord, such as marital conflict, separation and divorce. Where this was reduced, a decrease in child psychiatric disturbance occurred.
Local Experience
Outcomes for Australian children have been tentatively examined in a recent study. In Western Australia a Child Health Survey of 1462 families found that "one -third of children whose principal caregiver had been treated for a mental health problem in the previous six months had received treatment themselves, compared with over one-sixth of children whose principal caregiver had not been treated" [13].
Experience in other countries
Other studies have used reports from parents and/or service providers to determine the degree of psychosocial disturbance occurring for the children. Riebschleger et al. [14] conducted an exploratory study using purposive samples of parents with mental illness, adult children of mentally ill parents and professionals, (and included 22 children). The developmental needs, as reported by the adult participants, were said to be behavioural and learning problems at school, lack of emotional nurturance and multiple separations from parents. A U.K. study conducted a survey of mental health practitioners and child care services having contact with children of the mentally ill. These service providers reported on a sample of 60 children, among whom only one was seen not to be emotionally impaired according to the U.K. Children Act 1989. Children living alone with a parent with schizophrenia were identified as particularly isolated [15].
The aim of the present study was to ask clients of an area mental health service, who
were parents, to complete survey questionnaires about their children and about the nature
of support they wanted and did, or did not, receive. Case Managers were asked to
facilitate the participation of those clients who were parents of dependent children. This
paper will focus on the processes of implementing such a study.
Back to top
Study Population
Participants were clients of Maroondah Hospital Area Mental Health Service (MHAMHS) who were parents of dependent children up to 18 years old.
Procedure
After obtaining their Informed Consent parents were asked complete the following questionnaires:
i) The Extended Strengths and Difficulties Questionnaire (ESDQ)
This tool has been developed by the Institute of Psychiatry in London [16]. It evolved from experience with the Rutter instruments [17] and has been shown to be highly correlated with these scales, and with the Achenbach Child Behaviour Checklist [18]. Like these instruments, the ESDQ has versions for adolescents, parents and teachers, so that a number of perspectives may be gathered. It covers a range of major symptomatology and is useful for clinical diagnosis as well as measuring change. Some advantages of the ESDQ are: it takes 5-10 minutes to complete and is preferred by parents, it focuses on strengths as well as difficulties, it covers subjective distress, interference with home, school, peer and leisure activities and impact on others.
The ESDQ has two parts. The first part contains 25 items enquiring about positive and negative behaviour of the child. Five subscales are formed each consisting of five items. The subscales are: conduct problems, hyperactivity-inattention, emotional symptoms, peer problems and pro-social behaviour. The second part focuses in impact and burden on the child and the family, which also form subscales.
ii) The Service Utilization Questionnaire completed by parents. The questions on service utilization are adapted from those of Hornblow et al. [19] and consist of whether parents had sought help in the past year and the number and type of agencies contacted if they did seek help.
iii) The Help Seeking questionnaire completed by parents assesses the presence and type of perceived barriers in seeking help [19]. A list of 16 reasons for not seeking help are listed with provision for additional reasons to be recorded. These reasons include the fear of social stigma, the belief that help is unavailable, and practical difficulties in getting help.
iv) An open ended Parent and Child Support and Service Needs Questionnaire was
developed, which asked parents to identify services they would like to have for the
family, for themselves and for their children, and to also list types of services they had
found useful.
Back to top
Project Management and Implementation
Reference Group
A project Reference Group was established comprising the authors, the leaders of each of the adult mental health teams, and a worker who is a consultant and resource to the adult mental health service. The Reference Group initially discussed and approved the format of the questionnaires to be used. Subsequent discussion focused on the method of data collection from parents. Ongoing meetings of the Reference Group focused on progress of the project.
Methods Used to Promote the Project
In response to interest expressed by some Case Managers, five information folders were prepared for each adult mental health service team: the two community teams, the inpatient unit, the mobile team and crisis assessment team. The folders contained a summary of the funding submission and copies of the questionnaires. In order to provide Case Managers with some general background information copies of journal articles were included which addressed issues relating to the impact of mental illness on the family, the parent with mental illness, the effects on the dependent child and adult offspring, as well as a timeline of research and project work undertaken in Victoria, a relevant newspaper article, a copy of a newsletter prepared by a parent support group, and publicity flyers for two recently published books on the subject.
During the project, four newsletters were issued to each adult mental health team giving reports on the response rate, and reporting on early data.
At the conclusion of the process of data analysis, a presentation was made at the monthly Case Presentation Program held by the adult mental health service. A similar presentation was made to the child and adolescent mental health service.
Copies of an information leaflet about the project were placed in waiting areas at the
two community team sites.
Back to top
Recruitment
The Reference Group decided that parents would be recruited to the project in two ways. Case Managers in the two community treatment teams and the Mobile Support and Treatment Team (MST) were to be asked to inform clients who were parents about the project and invite their participation. Parents who were clients of the inpatient treating unit were approached by the Research Officer who was informed of their parental status at a weekly team meeting. The Research Officer arranged to attend a meeting of each team in order to explain the project and request their participation and support. Case Managers were asked to speak with their clients who were parents of dependent children, outline the purpose of the project including the research ethics and their right to not participate, or to withdraw, and to also hand them a leaflet which explained the project. Case Managers were to give parents the questionnaire pack at the time of a contact visit and offer to witness the Informed Consent form. Parents could complete the questionnaires in their own time, with the assistance of the Case Manager where this was feasible, and return them via their Case Manager.
Acknowledgement of the time involved in completing the questionnaires was made through paying parents $10 for each child about whom a questionnaire was completed. Consultation with a consumer consultant in the adult mental health service supported this form of acknowledgement, although seven parents did not want to be paid.
Response Rate to the Project
Data collection formally commenced on 1st November 1999 and concluded at the end of April, 2000. By the end of December it was decided the response rate was inadequate. Consultation internally and externally, and informal advice to the Research Officer from some Case Managers indicated three main reasons for this response rate.
- It took too much time for a Case Manager to explain the project when the agenda for a contact visit was already busy
- Parents perceived as threatening the interest of others in their children’s wellbeing
- Case Managers were also concerned that their relationship with their client might be jeopardised by talking about a research project that related directly to their children.
These factors, and the time limitation on clinicians led to the development of a
modified approach. It was decided to ask for minimal involvement of Case Managers. Under
the new arrangement an information leaflet was prepared for Case Managers to hand to
clients which contained more detail about the project. The Case Manager explained to the
parent that, with the parent’s permission, the Research Officer would be informed of
the parent’s interest in the project. The Research Officer’s role was to then
first write to the parent, following this up with a telephone call a few days later. The
project, and research ethics matters, was further explained. A set of questionnaires was
then sent to the parent, with a stamped, return address envelope enclosed.
Back to top
Responses to the Survey
Parents
136 clients were identified has having children under 18. 61 parents (44%) participated.
Some parents declined to participate (18) while others did not participate for the following reasons:
17 - received questionnaires but did not return them, despite follow up
6 - were unwell
4 - had the involvement of the Child Protection Service
4 - did not see their children
3 - were out of the area
23 – not possible to contact for various reasons (change of address, itinerant, no contact details, calls not returned).
Case Managers
A small number of Case Managers were able to include all their parent clients in the
project very early in the data collection process. It was necessary to assertively follow
up with other Case Managers to ensure any parents in their case load had been given the
opportunity to participate. A further group was Case Managers who it can be assumed felt
that an almost overwhelming task was being asked of them. When they were eventually
contacted they were surprised and relieved to find that all they had to do was identify
those clients on their list who were parents, and hand those parents the project flyer.
Back to top
1. Case managers do not have time to raise issues perceived as not central to a contact visit where the focus is on treatment issues.
Community mental health services were not developed with families in mind [1], and only very recently are some services making routine enquiries about the parental status of new clients. Therefore it is not routinely required of Case Managers to ask parents questions about their dependent children. Further discouragement to doing so is the fear parents have of their children being removed, which is aroused if someone does ask about their children, and the related anxiety of Case Managers concerning ‘losing’ the client by asking about their children. Speakers from Melbourne adult and child and adolescent mental health services appearing in the Hidden Children video [20] remind us that adult mental health workers have not necessarily received training in child development issues. A number of counties in Michigan, U.S.A., have adopted an integrated service model in which routine questions are asked on admission concerning the wellbeing of the children and the parental needs of the client. This change of procedure has been successful in Allegan County as it had the full support of the service Director, and the process followed to achieve this change was fully inclusive of Case Managers throughout [21].
2. Parents perceived as threatening the interest of others in their child’s wellbeing.
The experience of some parents with mental illness of their children being taken from their care by welfare authorities results in other parents being highly anxious that they too will ‘lose’ their children. Any kind of professional interest in their children is therefore treated with suspicion by some parents, and this includes collection of information for a research project. However many parents expressed support for the implementation of this project and were eager to participate, acknowledging that doing so would not help them in the short term, but would hopefully help other families in the future by increasing knowledge and understanding and improving services. The inclusion of parent/consumer consultants in the planning stages of any research submission, as well as in an ongoing consultation role may contribute to decreasing of the anxiety many parents feel.
3. Case Managers may feel that their relation with the client may be jeopardised by referring to their children.
There is no precedent for Case Managers in adult mental health services to enquire about the parenting needs of their client, or social and developmental issues for the children. Further, Case Managers are justified in feeling concern at alienating a parent by asking about their children. The burden [22] Case Managers may feel in relation to their case load could inhibit any interest in knowing about or contributing to research projects.
Recommendations for preparing a submission and implementing a research project concerning the needs of parents with mental illness and their dependent children
- Bring together key stakeholders at the beginning of the process: for example, child and adolescent mental health, adult mental health, community health, parents/consumers.
- Allow sufficient preparation time, with more people involved the process will take longer.
- Parents/consumers should be paid an agreed rate for their time.
- If the submission is successful, establish a Reference Group that also involves
parents/consumers.
Clearly define the role and responsibilities, and time requirement of all parties. Once again parents should be paid for their time. - When preparing to implement the project use consultation processes with the Case Managers from sectors who are expected to facilitate the participation of service users.
- Before implementing the project make an appointment time to brief the Case Managers, and provide them with written information.
- During implementation provide regular feedback about progress, and seek feedback about factors hindering the collection of data.
- As data is collected and analysed disseminate these findings to all stakeholders, this provides feedback about their contribution to the project.
- Finally, before deciding on a project, consider consulting with, say parent support groups (for parents with mental illness). The issues and needs they identify may lead to useful research directions, as well as establishing a connection that could facilitate the implementation of a future project.
This project was supported by a grant from the Australian Rotary Health Research Fund.
The participation of parents, Case Managers and Team Leaders at Murnong and Chandler
House community mental health centres, the Mobile Support Team, and the Inpatient Unit at
Maroondah Hospital made the project possible.
Back to top
References
[1] Howard, L. Psychotic disorders and parenting – the relevance of patients’ children for general adult psychiatric services. Psychiatric Bulletin, 24, 2000, 324-326.
[2] Gottesman, I.I. Schizophrenia Genesis. New York: Freeman, 1991.
[3] Cowling, V., McGorry, P.D. & Hay, D.A. Children of parents with psychotic disorders. The Medical Journal of Australia, 163, 1995, 119-120.
[4] Wang, A.R. & Goldschmidt, V.V. Interviews of psychiatric inpatients about their family situation and young children. Acta Psychiatrica Scandinavica, 90, 1994, 459-465.
[5] Poole, R. (1996). General adult psychiatrists and their patient's children. In Gopfert, M., Webster, J., & Seeman, M.V. (eds.) Parental Psychiatric Disorder: Distressed Parents and their Families. Cambridge: Cambridge Uni. Press, 1996, 3-6.
[6] Oates, M. Patients as parents: the risk to children. British Journal of Psychiatry, 170 (suppl. 32), 1997, 22-27.
[7] Blanch, A., Nicholson, J. & Purcell, J. Parents with severe mental illness and their children: the need for human services integration. Journal Mental Health Administration, 21,1994, 388-396.
[8] De Chillo, N., Matorin, S., & Hallahan, C. Children of psychiatric patients: rarely seen or heard. Health and Social Work, 12, 1987, 296-302.
[9] Goodman, S.H. Children of disturbed parents: the interface between research and intervention. American Journal of Community Psychology, 12, 1984, 663-687.
[10] Ritsner, M.S., Karas, S.I. & Drigalenko, E.I. (1991). Genetic epidemiological study of schizophrenia: two modes of sampling. Genetic Epidemiology, 8, 47-53.
[11] Silverman, M.M. (1989). Children of psychiatrically ill parents: a prevention perspective. Hospital and Community Psychiatry, 40, 1257-1265.
[12] Rutter, M. & Quinton, D. Parental psychiatric disorder: effects on children. Psychological Medicine, 14, 1984, 853-880.
[13] Zubrick, S.R., Silburn, S.R., Garton, A., Burton, P., Dalby, R., Carlton, J. Shepherd, C. & Lawrence, D. Western Australian Child Health Survey: Developing Health and Wellbeing in the Nineties. Perth, Western Australia: Australian Bureau of Statistics and the Institute for Child Health Research, 1995.
[14] Riebschleger, J., Freddolino, P., Kanaga, B., & Miller, J. Invisible People: Children of Parents with Mental Illness. Conference on State Mental Health Agency Services Research and Program Evaluation. The National Association of State Mental Health Program directors Research Institute Inc., Annapolis, Maryland, 1993.
[15] Landells, S. & Pritlove, J. Young carers of a parent with schizophrenia: a Leeds Survey. Leeds City Council, Department of Social Services, 1994.
[16] Goodman, R. The Strengths and Difficulties Questionnaire: A research note. Journal of Child Psychology and Psychiatry, 38, 1997, 581-586.
[17] Rutter, M., Tizard, J., & Whitmore, K. Education, Health and Behaviour. London: Longman, 1970.
[18] Goodman, R. & Scott, S. Comparing the Strengths and Difficulties Questionnaire and the Child Behaviour Checklist: Is small beautiful? Journal of Abnormal Child Psychology, 27, 1999, 17-24.
[19] Hornblow, A., Bushnell, J.A., Wells, J.E., Joyce, P.R., & Oakley-Brown, M.A. Christchurch epidemiology study: use of mental health services. New Zealand Medical Journal, 103, 1990, 415-417.
[20] Department of Human Services Victoria. Hidden Children, Hard Words Resource Kit (manual and two videos). Mental Health Branch, Department of Human Services Victoria: Melbourne, 1997.
[21] Allegan County Community Mental Health Services. Integrated Services for Children of Adults with Mental Illness. Michigan Department of Community Health, Lansing, Michigan, 1998.
[22] Meldrum, L. & Yellowlees, P. The measurement of a case manager’s workload burden. Australian and New Zealand Journal of Psychiatry, 34, 2000, 658-663.
Printable Version