Experiences and outcomes of prevention and early intervention programs for young people of parents with a mental illness

Abstract

Parental mental illness has the potential to affect children adversely. Children who have a parent with a mental illness may experience various psychosocial challenges and have a higher risk, than other children, of developing a mental illness themselves. At the same time, some young people are resilient in the face of adverse situations arising from their parent’s illness, especially when appropriate supports and interventions are provided. Although there are several interventions available to support young people of parents with a mental illness, research regarding their efficacy and effectiveness is limited. In addition, and critical to the main objective of this thesis, much of the previous work in this area, including intervention development and evaluation, lacks the young person’s point of view. There is a gap in previous research regarding how positive outcomes for young people whose parent has a mental illness might be promoted and sustained. Moreover, to the best of my knowledge, no research has specifically examined the needs and desires of children of parents with a mental illness regarding their preferred interventions and supports. It is important to elicit the views of young people from these families because young people have the capacity to contribute to the matters that directly affect them and I would argue, have the right to be engaged in the matters that concern them. The overall aim of this thesis was to investigate how different interventions impact young people living in families affected by parental mental illness, from the perspective of the young people themselves. Accordingly, four studies were conducted using a mixed method research design. The first study examined the impact of a DVD intervention called Family Focus for children whose parent has an affective disorder. The second study examined the impact of a booklet called When Your Parent Has a Mental Illness on young people. The third study identified children’s experiences of a peer support program, Kookaburra Kids Camp, and the outcomes of this type of intervention. The final study in the thesis was somewhat different and examined young people’s general perspectives of intervention programs and informal supports. This final study sought to identify what supports young people wanted, from whom, how they wanted it and why these supports were important to them. A mixed method research design was employed across all studies (Chapters 5 and 7, Studies 1, 2, 3 and 4). The first three studies employed three questionnaires administered at two different times: pre and post the intervention (DVD, peer support and booklet; Chapter 5, Studies 1, 2, 3). These questionnaires included two outcome measures (Chapter 5): the Children’s Knowledge Scale of Mental Illness and the General Help-Seeking Questionnaire. An intervention satisfaction questionnaire was also administered, post intervention. Paired-sample t-tests were used to identify changes on these questionnaires after youth engaged with the intervention (Chapter 5, Studies 1, 2 and 3) and frequency statistics using mean (M) descriptors were used on the intervention satisfaction questionnaire (Chapter 5, Studies 1, 2 and 3). In each study, individual semi-structured telephone interviews were employed two to four weeks after children accessed the intervention. Interview transcripts were analysed using thematic content analysis, a systematic means of describing and organising phenomena (Chapters 5 and 7, Studies 1, 2, 3 and 4). In the first study that examined the utility of a DVD intervention (Section 5.1) 29 children aged between 8 and 12 years participated. Post DVD, the children’s knowledge of mental illness improved. However, no change in the children’s help-seeking behaviours was found. According to interview data, the DVD challenged young people’s misconceptions about mental illness. Most children preferred watching the DVD with a parent. The second study (Section 5.2) examined the impact of a psycho-educational booklet. Nine participants aged between 12 and 15 completed questionnaires, and five of these participants took part in individual follow-up interviews. No change was recorded on the Knowledge Scale. Interview data suggested that after reading the booklet, young people were able to initiate conversations about their experiences with their parent. They described using the booklet to inform these conversations. In the third study (Section 5.3), which examined the impact of a peer support program, approximately 69 participants, aged between 8 and 12 years old, completed pre and post questionnaires, and 18 of these same participants engaged in telephone interviews to describe their experiences of the intervention. Mental health knowledge was improved after the program. Additionally, the children were more likely to use an anonymous telephone helpline after attending the program. Children indicated that the program provided a place of respite from caring for their parent with a mental illness and an opportunity to connect with peers. It also promoted a positive change in their perception of their parent’s mental illness. The fourth and final study of this thesis is different from the previous three studies (Chapter 7). The main objective of this study was to present young people’s expressed preferences for supports (for example, informal supports such as talking to peers or parents) and relatively more formal interventions (i.e. developed programs). To achieve this aim, a mixed method research design was employed, including a questionnaire we constructed ourselves followed by individual semi-structured telephone interviews. One hundred and seventy-five participants aged between 13 and 17 completed the online questionnaire, and six participated in individual telephone interviews. The youths identified a need for psycho-education and confidential support, and a preference for accessing information from health care professionals. However, the nature of this support, how it was accessed, from whom and why it was important varied greatly, suggesting that one intervention type may not suit all young people. Across the four studies, ‘talking with parents about parental mental illness’, ‘confidential and anonymous support’, ‘connection with peers’ and ‘information about parental mental illness’ were young people’s preferred supports. In addition, another overall finding of the thesis was that while young people want information about parental mental illness, they also want the opportunity to discuss their parent’s illness and that this conversation is one that is interactive and ongoing with their parent. This involved receiving different types of information about mental illness that was also delivered in different ways, such as through a DVD or booklet or presented to a group of peers. This thesis is the first large body of research explicitly examining young people’s experiences and perceptions of interventions. There are limitations in the various studies around the context of where the studies are positioned and in the use of the various questionnaires employed. Hence, notwithstanding the positive contributions of this thesis, the findings presented here can only be said to be moving towards understanding youths’ views of support, rather than being absolute or definite about their needs and intervention supports. Further participatory research is required to further substantiate and explore what interventions works, with whom, when and arguably more importantly, why. The thesis builds on previous literature regarding intervention programs and provides recommendations, based on young people’s reports, for the ways in which children of parents with a mental illness may be supported.