Health & social care in the community
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Health Soc Care Community · Jan 2005
Living with motor neurone disease: lives, experiences of services and suggestions for change.
Palliative care involves the complete, holistic care of people with progressive illness and their families. People living with motor neurone disease (MND) require a range of multidisciplinary palliative care services. However, there are significant gaps in our understanding of these people's lives, experiences of services and their suggestions for service change. ⋯ The findings are presented within three substantive groups: (1) the impact of MND on people's lives (the physical impacts of the illness, including increasing disability; social issues, including restrictions on social activities; and adjustments to people's lives, including methods of coping with the illness); (2) experiences of services (accessing service entitlements, information sources, professionals' attitudes and approaches, and professionals' knowledge and understanding of MND); and (3) suggestions for service change (better information and communication, including information on service entitlements; improved knowledge amongst professionals about MND; and some suggestions for service restructuring). This study brings a fresh approach to understanding the impacts of MND and the ways in which services can be improved to meet people's needs. The paper concludes with methodological considerations, the implications of the findings for practitioners and policy makers, and suggestions for further research.
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Health Soc Care Community · Jan 2005
A qualitative study exploring the experiences and views of mothers, health visitors and family support centre workers on the challenges and difficulties of parenting.
Successive policy documents have referred to the need to support parents as an approach to reducing social exclusion, behaviour problems among young people and crime rates. Much of the rhetoric focuses on professional intervention, and there is less attention paid to the views and experiences of parents themselves. The present study explores the experiences and views of mothers, health visitors and family support centre workers who work with parents on the challenges and difficulties of parenting children under the age of 6 years. ⋯ A number of themes emerged surrounding the challenges and difficulties of parenting and effective parenting, including expectations of others, establishing routines, play, behavioural issues and discipline, empathy, and communication. Similar themes emerged from all groups; however, there were qualitative differences between parents and professionals in the way in which these issues were expressed. Key statements from the parent focus groups have been developed into self-efficacy statements, which will be used as input to the development of a tool to measure the effectiveness of parenting programmes.