Kay Cook

Parent-proxy and child self-reported health-related quality of life: using qualitative methods to explain the discordance

BackgroundAlthough parent-proxy reports of health-related quality of life (HRQOL) are only moderately correlated with child reported HRQOL, it remains unknown why these scores differ. The aim of this study was to use a qualitative methodology to examine why parents and children report different levels of HRQOL.MethodThe sample consisted of 15 parent–child pairs. A think-aloud technique was used where parents and children were given a generic HRQOL instrument (KIDSCREEN) and instructed to share their thoughts with the interviewer. Qualitative analyses were conducted to assess whether parents and children base their answer on different experiences or reasoning, have different response styles, or interpret the items differently.ResultsThere was discordance between parents and children, in terms of rating scale and in terms of the reasoning for their answer. Children tended to have different response styles to parents, where for example, children tended to provide extreme scores (highest or lowest score) and base their response on one single example, more than parents. Parents and children interpreted the meaning of the items very similarly.DiscussionThis study provides evidence to suggest that discordance among parent-child pairs on KIDSCREEN scores may be as a result of different reasoning and different response styles, rather than interpretation of items. These findings have important implications when parent-proxy reported HRQOL is used to guide clinical/treatment decisions.

Using Critical Ethnography to Explore Issues in Health Promotion

In this article, the author outlines the need for a critical research method in the field of health promotion to explore the determinants of health. These determinants, including healthy child development, employment and working conditions, and education, for example, underlie many of the health issues that individuals experience. They are, in turn, influenced by nebulous factors such as patterns of inequality, and cultural norms, which are difficult to research using conventional methodologies. The author provides an overview of critical ethnography as a method for health promotion research. She describes specific data collection and analysis techniques, with the addition of critical discourse analysis to add scope to ethnographic findings. She concludes with an overview of the congruence between critical ethnography and health promotion research, including a discussion of the differences between critical ethnography and participatory action research.

A Qualitative Examination of the Experience of ‘Depression’ in Hospitalized Medically Ill Patients

Background: Research into depression in the medically ill has progressed without sufficient attention being given to the validity, in this group, of the taxonomic categories. We aimed to describe, using qualitative interviews, the experience of ‘being depressed’, separating experiences that are unique to depression from experiences that are common to being ill and in hospital. Method: Forty-nine patients hospitalized for medical illness underwent a 30-min interview in which they were asked to ‘Describe how you have been unwell and, in particular, how that has made you feel.’ From the transcripts, a ‘folk’ taxonomy was constructed using a phenomenological framework involving four steps: frame elicitation to identify the important themes, componential analysis to systematically cluster the attributes into domains, a comparison of the experiences of patients screening depressed and not-depressed, and a theoretical analysis comparing the resulting taxonomy with currently used theoretical constructs. Results: Experiences common to all patients were being in hospital, being ill or in pain, adjusting to not being able to do things, and having time to think. In addition, all participants described being depressed, down or sad. Patients who were identified by screening as being depressed described unique experiences of depression, which included ‘having to think about things’ (a forceful intrusive thinking), ‘not being able to sleep’, ‘having to rely on others’, ‘being a burden’ to others (with associated shame and guilt), feelings of ‘not getting better’ and ‘feeling like giving up’. Theoretical analysis suggested that this experience of depression fitted well with the concept of demoralization described by Jerome Frank. Conclusions: Demoralization, which involves feelings of being unable to cope, helplessness, hopelessness and diminished personal esteem, characterizes much of the depression seen in hospitalized medically ill patients.

Neoliberalism, welfare policy and health: A qualitative meta-synthesis of single parents’ experience of the transition from welfare to work

Following the United States’ lead, the emergence of neoliberal welfare policy across the western world has resulted in employment programmes for single parents, who are predominantly single mothers. While some governments claim that employment will improve single parents’ incomes and well-being, researchers dispute that single parents can unproblematically move into the workforce, with net positive effects. While researchers have quantified the socio-economic effect of these programmes, in particular on participant health, no study has yet synthesized participants’ experiences of welfare-to-work. Here, I present a meta-synthesis of eight qualitative health-related studies of single parents’ (and exclusively single mothers’) welfare-to-work transition. I report that single mothers faced a combination of health and economic issues which made their transition from welfare to work difficult, including degrees of poor physical and mental health. For participants in the United States, these health issues were often compounded by a loss of health benefits on moving into low-wage employment. In countries where a return to employment was required before children reached school age, a lack of affordable and appropriate child care, especially for children with health problems, exacerbated these difficulties. As a result of scarce resources, single mothers in receipt of welfare benefits often relied on food banks or went without food. A return to the workforce did not alleviate this problem as additional child care and reduced government subsidies depleted the funds available for food. I conclude that welfare-to-work policies are underpinned by the neoliberal assumption that the market more efficiently distributes resources than the State. However, for the women in the studies examined here, labour market participation often depleted access to essential resources. Interventions to address the ‘problem’ of welfare dependency must recognize the complex interplay between work incentives and disincentives and the care-work of single mothers.

Child support research in Australia : a critical review

Abstract The Australian Child Support Scheme impacts on the lives of many Australian families. Yet the Australian evidence base informing child support policy development is relatively sparse and lacks coherence. In this article, we employ an equity framework to consolidate the published Australian empirical child support research in order to identify gaps in current knowledge and assess the various layers of competing interest inherent therein. While researchers have begun to examine the financial outcomes of the new Australian Child Support Scheme, work is urgently needed to understand the effects that the new scheme has on children, payees and payers, and how these effects operate. We conclude by proposing an agenda for future Australian child support research that focuses on the aims of the scheme and the four equity principles we employ, namely, horizontal, vertical, gender, and intergenerational equity.

Maintaining Dignity and Managing Stigma in the Interview Encounter: The Challenge of Paid-For Participation

The interview is both popular and problematic in social research. In this article, we describe and make problematic interviews from a study conducted with impoverished elders in Melbourne, Australia. Participants were paid

Baseline assessment of organizational capacity for health promotion within regional health authorities in Alberta, Canada.

20 for each of two interviews. The result of the paid-for participation was double-edged in that it provided funds for impoverished participants, but the payment modified the exchange of free and open discussion. We describe key exchanges within the research interviews to exemplify how participants managed their experience and presentation of stigma and dignity. We demonstrate, with examples from the transcripts, strategies used by participants to gain agency over the process, while at the same time maintain enough of a semblance of conversational genre to make paid-for participation legitimate. We see this as an interesting methodological event that should inform analysis, interpretations, and the validity of interviews, rather than a problem with the interviewee.

Mental Health Promotion in Childcare Centres: Childcare Educators' Understanding of Child and Parental Mental Health

This paper provides a baseline profile of organizational capacity for (heart) health promotion in Albertas regional health authorities (RHAs); and examines differences in perceived organizational health promotion capacity specific to modifiable risk factors across three levels of staff and across capacity levels. Baseline data were collected from a purposive sample of 144 board members, senior/middle managers and service providers from 17 RHAs participating in a five-year time-series repeated survey design assessing RHA capacity for (heart) health promotion. Results indicate low levels of capacity to take health promotion action on the broader determinants of health and risk conditions like poverty and social support. In contrast, capacity for health promotion action specific to physiological and behavioural risk factors is considerably higher. Organizational “will” to do health promotion is noticeably more present than is both infrastructure and leadership. Both position held within an organization as well as overall level of organizational capacity appear to influence perceptions of organizational capacity. Overall, results suggest that organizational “will”, while necessary, is inadequate on its own for health promotion implementation to occur, especially in regard to addressing the broader determinants of health. A combination of low infrastructure and limited leadership may help explain a lack of health promotion action. (Promot Educ 2008;15(2): 6—14)

Scale Development of Individual and Organisation Infrastructure for Heart Health Promotion in Regional Health Authorities

Abstract Early childhood educators have an important role to play in the development of young children’s mental health yet rarely has their understanding of mental health and mental health promotion been researched. This study aims to explore childcare educators’ and managers’ understanding of child and parental mental health and the early signs of mental health problems. Participants (N = 19) were sampled from low socioeconomic status areas. Semi-structured interviews were conducted to explore their perceptions and experiences of child and parental social and emotional wellbeing. Results suggested that childcare staff were able to explain child wellbeing but were somewhat limited in their knowledge of risk and protective factors for child and parental mental health. They identified a need for additional training. There is a need to match understandings and practice in mental health promotion to existing early childhood frameworks which inform the work of early childhood educators.

The framing of Australian childcare policy problems and their solutions

Objective The purpose of this study was to validate measures of individual and organisational infrastructure for health promotion within Albertas (Canada) 17 Regional Health Authorities (RHAs). Design A series of phases were conducted to develop individual and organisational scales to measure health promotion infrastructure. Instruments were designed with focus groups and then pre-tested prior to the validation study. Setting In 1993 all hospitals and Public Health Units in the province of Alberta were regionalised into 17 RHAs, with responsibility for public health, community health, and acute and long-term care. While regionalisation may offer more opportunity for community participation, reorganisation of the public health system may have fragmented and diluted resources and skills for heart health promotion in some RHAs. Infrastructure (for example, human and financial resources), amongst other items, is believed to contribute to the capacity to promote health. Method All 17 RHAs participated in the study, yielding a total of 144 individuals (that is board members, senior/middle management, and front line staff). These representative employees completed a self- administered questionnaire on individual- and organisational-level infrastructure measures. Results Psychometric analyses of survey data provided empirical evidence for the robustness of the measures. Principal component analyses verified the construct validity of the scales, with alpha coefficients ranging from 0.75 to 0.95. Conclusion The scales can be used by health professionals and researchers to assess individual- and organisational-level infrastructure, and tailor interventions to increase infrastructure for health promotion in health organisations.