Academic journal article International Public Health Journal

Children in Families with Complex Needs

Academic journal article International Public Health Journal

Children in Families with Complex Needs

Article excerpt


When families are vulnerable and have multifaceted challenges, the additional concerns of raising a child with a disability have consequences for quality of life. Family quality of life has many influences. Research in the field (1, 2) has explored the impacts on quality of life for families which include members with disabilities. In this paper, we apply the formulations and approaches of family quality of life as developed in the field of intellectual and developmental disability (IDD) to other conditions where parents are worried, stressed and have concerns. This paper reports on an Australian study commissioned by the Australian government Department of Families, Housing Community Services and Indigenous Affairs (FaHCSIA) (3), in order to shape more responsive and integrated service delivery. The study aimed at developing a deeper understanding of the experiences of families with complex needs. The study began with families with a broad range of complex needs but what surprised us was how many families included children with a variety of disabilities, including intellectual, sensory and physical impairments.

What emerged very strongly for families were their worries about their children. These concerns were related to a range of issues, particularly the effect of not having enough money, or their ability to ensure their children's basic needs were met. For example, many parents spoke of not always having money to pay for food, bills or for services such as child care (4). However almost a quarter of the parents (23%) interviewed identified their concern of having a child with a need for special support. For some parents, the 'normaF worries about their children were exacerbated by their child's or children's disabilities which included: intellectual disabilities and associated problems at school, and disabilities such as hearing loss and auditory processing disorders, and major acute and chronic health issues that have an impact on families.

This paper first provides an overview of family quality of life in the context of what it means to have complex needs before a brief discussion from the extensive literature on the impact on families when children have either a chronic illness or disability. We then describe the broader families study carried out in 2009 before presenting the findings from families who have serious worries about their children. This is undertaken by reference to the family quality of life framework and we examine the effect of the additional challenge of raising a child with a disability when the family is already vulnerable. We argue that services need to be much more focused on assisting families to meet their children's needs to alleviate the significant stress they experience. And examine the mechanisms for enhancing family quality of life in challenging circumstances.

Families, children and multiple disadvantages

Family quality of life (FQOL) emerged as an extension of the quality of life model from the beginning of the new millennium (5) in recognition that increasing numbers of people with disabilities were living at home and that the environment contributed to quality of life (2). In 2003, Park and colleagues defined FQOL as 'conditions where the family's needs are met, and family members enjoy their life together as a family and have the chance to do things which are important to them' where 'family' was defined as the group of 'people who think of themselves as part of the family, whether related by blood or marriage or not, and who support and care for each other on a regular basis' (6). In our study, we accept the broad definition adopted by Park and colleagues as our interpretation of 'family'. Family quality of life is a relatively recent development in the field of quality of life and yet it has made a significant impact due in no small part to the inextricable connections between an individual and those closely associated with them. Brown and Brown provide a detailed summary of the field of family quality of life (FQOL) from the perspective of intellectual and developmental disabilities (7) and as we will note the principles arising from that field have resonances with our work and therefore extends the ideas to complex needs more generally. …

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