Development of a Parent Version of the Manchester-Minneapolis Quality of Life Survey for use by Parents and Crers of UK Children: MMQL-UK (PF).

Background Although it is now widely endorsed that children should as far as possible rate their own health related quality of life (HRQL), there are situations where proxy information on child HRQL may be useful, especially where a child is too ill or young to provide their own HRQL assessment. There is limited availability of generic HRQL scales that have a parallel child and parent version and that are reliable, valid, brief, comprehensible and suitable for use in UK populations. The aims of this study were therefore to develop and validate a parent version of the anglicised Manchester-Minneapolis Quality of Life child form (MMQL-UK (CF)) and to determine the level of association between the child and parent versions of this form. Methods This study was undertaken concurrently with the anglicisation and validation of the MMQL, a measure of HRQL developed for use with children in North America. At that time, no parent version existed, so the MMQL form for children (MMQL-UK (CF)) was used as the basis for the development of the MMQL-UK parent form (PF). The sample included a control group of healthy children and their parents and five exemplar groups; children diagnosed with asthma, diabetes or inflammatory bowel disease and their parents, children in remission from cancer and their parents and children in public care and their carers. Consistency of the MMQL-UK (PF) components were assessed by calculating Cronbach's alpha. Validation of the parent questionnaire was undertaken by comparing MMQL-UK (PF) component scores with comparable components on the proxy PedsQL™ quality of life scales, comparing MMQL-UK (PF) component scores between parents of healthy and chronic disease children and by comparison of component scores from children and their parents or carers. Reproducibility and responsiveness were assessed by retesting parents by follow-up questionnaires. Results A total of 874 children (completing MMQL-UK (CF)) and 572 parents or carers (completing MMQL-UK (PF)) took part in the study. The internal consistency of all the MMQL-UK (PF) components exceeding the accepted criterion of 0.70 and the construct validity was good with moderate correlations being evident between comparable components of the MMQL-UK (PF) and the proxy PedsQL™. Discriminant validity was demonstrated with significant differences being identified between parents of healthy children and those with chronic conditions. Intra-class correlations exceeded 0.65 for all MMQL-UK (PF) components demonstrating good reproducibility. Weak to moderate levels of responsiveness were demonstrated for all but social functioning. The MMQL-UK (PF) showed moderate parent-child correlation with the MMQL-UK (CF) for all components. The best correlations were seen for those components measuring the same construct (Pearson's r ranged from 0.31 to 0.61, p < 0.01 for equivalent components). Conclusion The MMQL-UK (PF) showed moderate to good correlations with the MMQL-UK (CF) component scores. The MMQL-UK (PF) will be of use when comparing child and parent/carer perception of the impact of a child's condition on their HRQL or where the child is too ill or young to provide their own report.

It has had quite a lot of reverberations through the family": reconfiguring relationships through parent with dementia care

In this chapter I explore the accounts of adult children caring for a parent with dementia. Dementia is typically understood to be an umbrella term for a large number of conditions, the most common of which are Alzheimer’s disease, vascular dementia and fronto-temporal dementia. These are progressive – ultimately terminal – conditions that affect memory, communication, mood and behaviour. I examine the accounts of interactions with parents with dementia that fracture and reconfigure normative familial relationships. In so doing I suggest that, in the absence of a primary spousal carer, caring for a person living with dementia can necessitate particular issues for adult children that trouble notions of how we understand familial roles, responsibilities and ‘duties’.

Managing Transition from Curative to Palliative: GP and Bereaved Parent Experiences

Background Children with cancer in the UK are treated in regional childhood cancer centres (RCCC). Families and health care professionals can develop close working relationships over the often-long duration of treatment. Cancer still accounts for largest numbers of childhood disease related deaths and as home is commonly the choice of location for palliative and end of life care, the child and family can face transitions both from curative to palliative care and from hospital to home. This paper reports on findings relating to these transitions from the perspectives of parents and family doctors highlighting implications for both hospital and community based health care practitioners. Aims To explore the experiences of bereaved parents and family doctors following the death of a child with cancer in the family home. Methods Ethical approval was sought and obtained. In this qualitative study one-to-one semi-structured interviews were undertaken with 18 GPs and 11 bereaved parents. The parents were those whose child had received treatment for cancer at a RCCC in the UK and who died at home, the GPs were those involved in the palliative care. Chronological comparative data analysis using grounded theory was completed. Results Cessation of contact with the RCCC when the child receives palliative care at home can be traumatic for parents. Hospital and community based health care professionals need to carefully consider how they establish, maintain and end working relationships with the child and family. Conclusions Findings from this study provide a new perspective to the effective management of transition in paediatric oncology palliative care; managing working relationships. Findings highlight the need for hospital and community based staff to identify and employ strategies that ensure working relationships with families are effectively managed prior to, during and following the child’s transition from curative to palliative care.

Intimate Partner Violence and Pregnancy Intentions: A Qualitative Study

Aim and Objective In this qualitative study we explored women’s pregnancy intentions and experiences of intimate partner violence before, during and after pregnancy. Background Unintended pregnancies in the context of intimate partner violence can have serious health, social and economic consequences for women and their children. Design Feminist and phenomenological philosophies underpinned the study to gain a richer understanding of women’s experiences. Methods Eleven women who had been pregnant in the previous two years were recruited from community-based women’s refuges in one region of the United Kingdom. Of the eleven women, eight had unplanned pregnancies, two reported being coerced into early motherhood, and only one woman had purposively planned her pregnancy. Multiple in-depth interviews focused on participants’ accounts of living with intimate partner violence. Experiential data analysis was used to identify, analyse and highlight themes. Results Three major themes were identified: men’s control of contraception, partner’s indiscriminate response to the pregnancy, and women’s mixed feelings about the pregnancy. Participants reported limited influence over their sexual relationship and Accepted Article This article is protected by copyright. All rights reserved. birth control. Feelings of vulnerability about themselves and fear for their unborn babies’ safety were intensified by their partners’ continued violence during pregnancy. Conclusion Women experiencing intimate partner violence were more likely to have an unintended pregnancy. This could be attributed to male dominance and fear, which impacts on a woman’s ability to manage her birth control options. The women’s initial excitement about their pregnancy diminished in the face of uncertainty and ongoing violence within their relationship. Relevance to clinical practice Women experiencing violence lack choice in relation to birth control options leading to unintended pregnancies. Interpreting the findings from the victim-perpetrator interactive spin theory of intimate partner violence provides a possible framework for midwives and nurses to better understand and respond to women’s experiences of violence during pregnancy.