Disabled moms

Home  back

As a result the child and young person may face a number of developmental hurdles in their path to adulthood. While the effects of having a parent affected by mental illness are yet to be well documented, the prevalence of emotional and behavioural difficulties among children and young people with a parent affected by a mental illness is reported to be much higher than for the general population (Farrell et al. 1999). These children and young people are also over represented in out-of-home care services (Cuff & Pietsch 1997). In addition, even very young children may need to take on the role of carer for their ill parent.

There is currently a lack of statistical information on the number of children who have a parent with a mental illness in Australia. Australian studies have found that, during survey periods, between 29% and 35% of adult mental health service clients are female parents of dependent children under the age of 18 (Cowling 1999; Hearle et al. 1999; Farrell et al. 1999). Seventy per cent of these children are living with their mother. With the prevalence of mental illness in our adult community estimated to be just below one in five at 17.7% (Andrews et al. 1999) and depression set to become the second most significant world health concern by 2020 (Murray & Lopez 1997) it can be anticipated that a significant number of children and young people will have a parent affected by a mental illness.

However, families that include a parent affected by mental illness can be supported so that the children and young people are effectively parented. In addition, interventions that target the risk factors experienced by these children and develop their ability to cope with adversity can decrease their risk of developing poor mental health and the concomitant disadvantages.

Addressing the need

The Mental Health Promotion and Prevention National Action Plan: Under the Second National Mental Health Care Plan, 1998-2003 (National Mental Health Promotion and Prevention Working Party 1999) identified several actions necessary with regard to children and young people who have a parent affected by mental illness. These included researching effective community-based interventions, evaluating the effectiveness and sustainability of prevention initiatives, and developing positive outcomes for these children including improved support, mental health and parenting, and better knowledge and understanding of parental illness.

In 1999, the Australian Infant, Child, Adolescent and Family Mental Health Association Ltd (AICAFMHA AICAFMHA - Australian Infant, Child, Adolescent and Family Mental Health Association Ltd (Australia)) undertook a national scoping project to identify the services available, and future plans for services, for children of parents with a mental illness. This study, which was commissioned by the Mental Health and Special Programs Branch of the Commonwealth Department of Health and Ageing had the following brief:

To undertake a project that will identify current major State and Territory evidence-based initiatives in relation to how each jurisdiction is addressing the needs of children of parents with a mental illness, and future plans for work in this area. It is expected that the project will result in a report that outlines major activities, identifies gaps and makes recommendations regarding future work and action in this area.

Activities will include:

* gathering information from, and consultation with, State and Territory mental health branches on key projects and services for children of parents with a mental illness in their jurisdiction and any future plans they have for work in this area; and

* analysis and reporting of project findings, including the evidence base of current activities, their availability and sustainability, and recommendations for future action.

The report of this scoping project (AICAFMHA 2001) was finalised in August 2000 and launched by the Minister for Health in May 2001.

Selected scoping project findings

Questionnaires to identify services' awareness of the support needs of these children and young people and their families were distributed to a wide range of agencies in the community. For the purposes of this scoping research, the term "children" encompassed the birth to 18 years age range. The project, while limited in scope and time, was successful in gathering a great deal of relevant information and identifying issues that require attention.

The findings clearly illustrate that there is an emerging awareness across Australia regarding the existence of this group of children and young people and the developmental risks they may be experiencing, and a move towards identifying and meeting these needs. Policy frameworks to support mental health services in recognising the needs of both the parents and their children and responding effectively are either in place or under development in most States. The project also clearly identified that these children and young people and their families may never present to a mental health agency but may come to the attention of schools, health and welfare agencies, or drug, alcohol, youth and justice services.

Recommendations made by previous Australian reports located by the project fall under three main themes:

* interventions are required that support children (for example, services to provide continuity of care, peer support, education on mental illness, and improved resilience and coping skills);

* interventions are required that support the parent (for example, planned care and respite services, interventions that provide validation and support of the parenting role, family-focused mental health services and practical in-home help); and

* policy/service-level changes should be aimed at better identifying and meeting the needs of these children and their families.

The survey, as would be expected, revealed that some States are further developed in their responses to these children and families than others; however, initial collaborative or research work to identify and address these needs was identified in all States. Fifty programs were classified as targeting the needs of children and young people of parents affected by mental illness or the parents themselves. Of these, 44 survey responses were available at the time of data analysis. Indirect strategies included activities such as interagency networks to facilitate effective responses to support these young people and/or their families, or working with adult mental health services to identify those clients who have children and what, if any, their support needs might be. Direct strategies included working directly with the child or the parent, including support groups and respite care.

Table 1 shows the number of national priority mental health targets identified by survey respondents as pertaining to their program.

Consideration of the issues identified by the study will help the States and Territories continue to move forward in addressing the needs of these children and families. The report indicates that a flexible network of support should be available in our community. This clearly requires a high degree of interagency collaboration. These children and their families are highly individual and have different types and degrees of need at different times so the type of support required will vary and must be flexible and responsive. These children, and indeed their parents, may present to a wide range of non-mental health agencies that should be aware of their needs, know how to respond appropriately and know the resources that are available.

There are a number of challenges to such interagency collaboration that require consideration. Agencies are not always aware that the adult who has a mental illness is also a parent, and they are often concerned about the adult mental health client's right to confidentiality. The parents may fear that they will lose their children if they indicate they need help. Agencies should also be clearer about their responsibilities, roles and practices. Table 2 clearly shows the priority given to collaboration in service delivery with 70% of survey respondents indicating that the development of interagency networks was a key strategy within their program.

The report recognised that a number of States have already begun addressing the initial identification of these "hidden" children by asking adult mental health clients on intake whether they are parents (Table 2). Other positive changes found to be under way in some services include developing strategies in adult mental health services that are holistic and family oriented, and reorienting services to prevention of mental illness and promotion of mental health. These processes will be assisted if adult mental health workers are educated about identifying the needs of children, and of parents with regard to their parenting role, and initiating appropriate referral and liaison with other agencies. Many workers indicated that the amount of time this takes, as well as current record keeping and funding arrangements, are a barrier to working in this manner.

In addition, the report found that the needs of children of migrants experiencing significant mental health problems, of Indigenous communities and of children living in rural and remote areas (as opposed to regional country centres) are yet to be specifically identified and addressed.

Finally, the report identified the importance of using research evidence as a foundation for practice, and reported workers' interest in accessing this type of information. However, workers were hampered by time and resource constraints in identifying and analysing the research and by the fact that the evidence regarding effective interventions for these children and their parents is scarce. A high level of commitment to program evaluation indicated that, with expert assistance, there may be opportunities for program providers to participate in further developing the research evidence base by upgrading their program evaluations to contribute this type of research information.

Please refer to http://www. aicafmha.net.au/projects/for an online version of the scoping project report, an up-to-date resource list and information on support programs and interagency support networks currently operating around Australia.

Recommendations of the scoping project report

Recommendations were developed with the assistance of the reference group for the project and further refined after consultation with the Promotion and Prevention Working Party and the Commonwealth Department of Health and Ageing.

The report recommends that mental health services be supported through the development of guidelines for responding to children with parents affected by mental illness. These guidelines should be disseminated broadly, with future consideration given to development of programs that adhere to the principles of these guidelines.

The importance of intersectoral collaboration is recognised with recommendations relating to strategies for encouraging the mental health sector to work closely with all sectors involved with children. These strategies need to recognise barriers to appropriate and collaborative service delivery and provide practical approaches to overcome them. Specific education materials relating to the needs of these families are an additional requirement and should also be widely disseminated.

Recommendations relating to research and education incorporate reorientation of clinical practice in accordance with the guidelines developed, and expert research support being made available to services to encourage contribution to current national and international knowledge on good practice.

A national approach

In response to the scoping project report, the Commonwealth Government allocated funding for a three-year national initiative. The Children of Parents with a Mental Illness National Initiative aims to promote better mental health outcomes for children of parents with a mental illness. Participation by families, children and young people will be pivotal in achieving this aim.

The outcomes expected from this national initiative are:

* The uptake around Australia of good practice principles and guidelines by services and people working with children and young people of parents with a mental illness.

* The development and distribution of appropriate resource materials to children/young people of parents with a mental illness and their families, and to people working with them, in line with the good practice principles and guidelines.

* The provision of high quality information to the Department of Health and Ageing to enhance future policy development regarding children of parents with a mental illness and their families.

Implementation of the national initiative will be monitored and facilitated by a nationally representative reference group. Membership of this group will include people from a range of sectors and with varied expertise and experience. Young people, consumers and/or carers will be invited to participate at all levels and stages of the project. The initiative will progress through a number of key stages: consultation, development, piloting, evaluation and dissemination. These are identified in Figure 1.

[FIGURE 1 OMITTED]

The initial phase aims to include consultations with parents, young people, and mental health and education workers across all target age groups and services and across sectors that are concerned with children and families. The consultation strategies used will vary according to what is most appropriate for participants. The involvement of families and young people is a primary objective of the initiative, and a range of innovative and inclusive strategies will be supplemented by questionnaires, focus groups, videoconferencing and web-based discussion.

Several discussion sessions with young people, carers, consumers and professionals were conducted as part of the consultation process at the First National `"Holding it all together" Conference: for all involved in meeting the challenges for children and families where parents have a mental illness' in Melbourne during April 2002.

An all-inclusive survey of South Australian psychiatric/mental health nurses working in adult mental health settings will be conducted to provide in-depth data about the level of knowledge held by nurses in regard to their statutory obligations pertaining to the children of clients with a mental illness.

The consultation phase will also help in identifying stakeholders, particularly young people, who may wish to be involved in different aspects of the project such as contributing to guideline/principle development and resource review/development.

The identification of existing resource materials during the consultation process will provide a substantial base for the development of further resources. Innovative ways of providing information and creative education tools will be reviewed and their suitability evaluated with regard to the information collected from stakeholders in the consultations. The participation of young people and families in the evaluation and development of resource materials will be actively encouraged. Where gaps are identified between existing resources and the needs of stakeholders, additional resources will be developed by the initiative in accordance with the guidelines.

Figure 2 illustrates key components and expected outcomes for the consultation phase of the national initiative.

[FIGURE 2 OMITTED]

The development of initiative materials and resources will be incorporated into the consultation process time line. Information from key stakeholders, in conjunction with national and international literature, will provide the basis for the good practice guidelines and principles, which will be piloted along with the resources. The guidelines and principles will be targeted for:

* services and interventions for peri-natal and early childhood;

* services and interventions for children aged 8-12 years;

* services and interventions for adolescents;

* services and interventions for parents; and

* the development of collaborative partnerships and cross-agency processes to met the needs of these families.

Resource materials will be developed for:

* workers providing services to parents with a mental illness or to children who have a parent affected by a mental illness;

* adults with a mental illness who have or intend to have children;

* parents affected by a mental illness and their child during the peri-natal and early childhood;

* children aged 8-12 years who have a parent affected by a mental illness;

* young people who have a parent affected by a mental illness; and

* workers and service providers involved in the development of collaborative partnerships and cross-agency processes to met the needs of these families.

The piloting of materials and resources will follow consultation and resource development. A representative sample of pilot sites will consider location, size, setting and clientele characteristics including ethnicity, age and Aboriginality.

Formal evaluation of the materials and resources will be undertaken as part of the pilots. Items will be evaluated for quality and effectiveness with a view to contributing to an evidence base to support future work. Subsequently, materials will be extensively disseminated and supplemented with strategies to encourage the uptake and implementation of the guidelines and principles. Support in using the resource materials will also be available during this time.

Summary

Growing up with a parent who has a mental illness can be a rocky path for a child. However, with appropriate support and information, the path can be smoothed for both the young person and their parents. The Children of Parents with a Mental Illness National Initiative will assist young people, their parents, generic community services and specialist mental health services through the provision of information resources and the promotion of a flexible network of support in our community for these families.

The progress of the initiative can be tracked at the AICAFMHA web site at http://www.aicafmha.net.au/ Alternatively, interested persons can subscribe to the AICAFMHA News email list to receive the fortnightly News in Brief e-newsletter with updates on mental health news, events, resources and AICAFMHA news, including notices of project updates on the web site.

Table 1. National priority mental health targets addressed by the

program



National priority mental health target     Yes       No     No response

addressed                                 % (N)    % (N)       % (N)



Promote optimism, resilience, social       81.8%     4.6%       13.6%

and emotional well-being for children     (35)      (2)         (6)

whose parents have mental health

problems



Engage families where one or both          54.6%    31.8%       13.6%

parents have a mental illness in mental   (24)     (13)         (6)

health promotion and prevention

programs



Initiatives aimed at reducing the          72.8%    13.6%       13.6%

impact of risk factors on the mental      (32)      (6)         (6)

health of all family members



Enhance parenting skills, child            68.2%    18.2%       13.6%

development and family functioning        (30)      (7)         (6)



Promote strong and positive attachments    63.7%    22.7%       13.6%

between parent and child                  (28)     (10)         (6)



Promote child and family participation     40.9%    45.5%       13.6%

in school and community activities        (18)     (20)         (6)



Other                                       6.8%    79.6%       13.6%

                                           (3)     (35)         (6)

Table 2. Service delivery initiative used by programs



Service strategies used                   Yes       No     No response

(ranked in order of frequency)           % (N)    % (N)       % (N)



Education of staff regarding the needs    72.8%    13.6%      13.6%

of children whose parents have a         (32)      (6)        (6)

mental illness



Establishment of interagency networks     70.5%    15.9%      13.6%

of professionals sharing ideas/          (31)      (7)        (6)

strategies



Establishment of best practice            59.1%    27.3%      13.6%

principles to ensure appropriate         (26)     (12)        (6)

service response to the needs of

children whose parents have a mental

illness



Service initiatives to improve the        54.6%    31.8%      13.6%

identification of adults who have a      (24)     (14)        (6)

mental illness who are also parents



Advocacy for children whose parents       54.6%    31.8%      13.6%

have a mental illness                    (24)     (14)        (6)



Other                                      6.8%    79.6%      13.6%

                                          (3)     (35)        (6)