Purpose
The purpose of this literature scan is to provide up-to-date information on what is known about children and young people affected by medical child abuse and Factitious Disorder Imposed on Another (FDIA; previously known as Munchausen syndrome by proxy). It is hoped that this literature scan will contribute to kaimahi being able to articulate the importance of safety-organised assessment and planning when working with affected families or whānau. This is particularly important in assessing the ability of affected families and whānau to achieve safety into the future, as agencies and others step back. As such, this literature scan has multiple intended uses:
- to be shared with kaimahi as required
- to inform professional practice responses to requests for assistance when Oranga Tamariki has kaimahi working with families or whānau where medical child abuse or FDIA may be present
- to know more about this area to inform future policy and practice work. The intended audience for this work is social work practitioners working in care and protection, specifically kaimahi across Oranga Tamariki. The focus is on what is needed for the safety of children and young people experiencing medical child abuse.
Methodology
Scope
This literature scan contributes to the Oranga Tamariki evidence base by providing an overview of current literature relating to the areas outlined below.
Evidence area one: Identification and diagnosis of medical child abuse and FDIA
- What characteristics or types of behaviour might be observed in a person resulting in medical child abuse or exhibiting FDIA?
- How often does FDIA get mis-diagnosed as another type of mental health disorder?
- What is the pathway to getting a diagnosis and how often is this disorder diagnosed?
- What is known about the ethnicity and gender break-down of those who exhibit and/or are diagnosed with medical child abuse (in Aotearoa and internationally)?
- What makes getting a diagnosis so challenging?
Evidence area two: Best practice for management and intervention
- What does the evidence say about the best social work approach is in responding to these child protection cases?
- What are important considerations to factor into the social work assessment?
- How can a safety organised practice approach be taken to engagement, assessment, planning with whānau
- What opportunities exist for establishing best practice in the delivery of services to tamariki and whānau affected by medical child abuse, that empowers self-discovery and upholds people’s dignity (mana enhancing)?
- What are the best intervention options for people with FDIA (including when this is highly suspected but not confirmed with a diagnosis)?
Due to the intended uses of this literature scan, greater emphasis is placed on evidence area two in this report.
For the purposes of this literature scan, the following areas were considered out of scope:
- Literature related to medical child abuse and factitious disorder (previously known as Munchausen syndrome) i.e. where the perpetrator is feigning illness or injury in themselves.
- Cases of medical child abuse where the person being harmed is over the age of 18, or where the person responsible is not in a caregiving relationship with the person being harmed.
- Cases of FDIA where the harmful behaviours are directed at an animal or pet.
- Literature relating to adult survivors of medical child abuse or FDIA (i.e. where the person harmed was a child or young person at the time, but the focus of the research is on supports/services or wellbeing in adulthood).
Literature search
In total, information from 44 journal articles or reports was used to provide a summary of the evidence as it relates to each key research area. The following databases were searched between 6 – 8 May 2021:
- Cochrane Library
- CINAHL
- Google Scholar
- ProQuest
- PsycINFO
- PubMed
- ScienceDirect
- Scopus
- Web of Science
Searches for published evidence relevant to Māori and other indigenous populations were also conducted using the following databases:
- https://evols.library.manoa.hawaii.edu/
- https://nzresearch.org.nz/
To conduct the search, we used combinations of subject/index terms and key words. All search terms used in the literature scan are provided in Table 1 below. Searches were conducted using all possible combinations from each of the columns.
The title and abstracts of initial returns were reviewed for relevance to the key research areas. The references used in articles or reports that passed this initial review, as well as lists of documents that had cited these articles or reports (generated by the databases searched), were also checked for any further relevant information sources.
From this first sweep, full texts for all potential inclusions (254 documents) were reviewed for relevance to the key research areas. Because of the large number of initial relevant returns, further inclusion criteria were developed to reduce the final number of documents included in this literature scan. These new criteria included limiting included documents/articles to those published 20102 and after, excluding case studies/case reports, and excluding documents/articles that only tangentially considered medical child abuse or FDIA (e.g., where the document/report focused on child abuse in general). Further documents were also excluded for various reasons, including the body of the document/article not being written in English, or the subject matter being factitious disorder rather than medical child abuse or FDIA. In total, 210 documents were excluded from the literature scan after reviewing the full text. This left a total of 44 articles and reports included in the final literature scan
Key Results
Characteristics and behaviours associated with medical child abuse
- Illness or disorder in children can be falsified in many ways, both in causing symptoms, or lying about symptoms. These behaviours result in both the direct and indirect harm of children.
- People responsible tend to have histories of trauma themselves, poor mental health, and attachment difficulties.
- Although most people responsible for medical child abuse are married or in long-term relationships, it is common for them to experience relationship dysfunction and/or family violence.
Early detection of medical child abuse
- The literature identifies a number of warning signs demonstrated by both parents/caregivers and children that can indicate the presence of FDIA resulting in harm to a child. These warning signs generally relate to inconsistent, puzzling or deceptive behaviours demonstrated over a period of time.
Confirmation and diagnosis of suspected FDIA
- A diagnosis of FDIA is not required to determine that abuse and neglect has occurred. The primary focus of social work professionals responding to cases of potential FDIA should be on child wellbeing and safety, and of the family or whānau, rather than diagnosis.
- Assessment of parents or caregivers for diagnostic purposes should be conducted by a qualified mental health professional, due to the complexities involved in the diagnosis.
- Record-based behavioural analysis is generally considered to be the most robust way to detect cases of FDIA.
- There is a tendency for cases of FDIA to go unrecognised and unreported. A large contributor to this problem is the tendency of health professionals to trust the reports of parents and caregivers.
Responding to medical child abuse cases: general principles
- The ultimate goal of any response plan in cases of medical child abuse is to stop the abuse from occurring, to ensure that the child and any siblings are safe, and to allow for the treatment of those causing harm in the least restrictive means possible.
- The literature highlights the importance of multi-disciplinary, coordinated approaches for the response and management of cases.
- ‘Informing sessions’ can be held with parents or caregivers once suspected medical child abuse has been established, to build the basis of a transparent and solutions-focused relationship between the multi-disciplinary team and the parents or caregivers.
Safety considerations when working with families and whānau affected by medical child abuse
- There are ongoing safety concerns for children after a case has been identified. For example, people responsible for FDIA behaviours may intensify their abuse in order to ‘prove‘ that their child is sick.
- Where the child remains at home it is crucial that their safety is ensured which requires close monitoring of the behaviour of the parents or caregivers.
Factors to consider in assessment
- A full assessment of the family and whānau should be conducted by social workers after a case has been identified or referred, with the aim of identifying the nature of harm to the child (and potentially their siblings), and the current needs (including mental health needs) of the child, the parent or caregiver, and other family or whānau members.
- The possibility of inaccuracies in existing information about the child and their family or whānau is important to keep in mind. People responsible for medical child abuse behaviours may have engaged in the deceit and manipulation of health and social service providers over a long period of time.
Interventions with families and whānau
- Some parents or caregivers involved may never be able to safely care for their children.
- However, the likelihood of positive outcomes is increased in instances where the person responsible for medical child abuse acknowledges and shows insight into their behaviours.
- Keeping the child safe often focuses on building the skills of parents and caregivers to improve the overall wellbeing of the family or whānau.