Gender differences among Canadian spousal caregivers at the end of life
Palliative Care; Parent caregivers; end-of-life care; Gender differences; home-based palliative care; spousal caregiving
The purpose of this study was to examine gender differences in spousal caregiving at the end of life. The primary research question was to determine gender differences in caregiver strain among spousal caregivers. The study was conducted over a 2-year period (2000–2002) in south-central Ontario, Canada. The study sample included 283 informal spousal caregivers (198 females, 85 males) each of whom were caring for a terminally ill spouse at the time they participated in a cross-sectional telephone survey. The analysis showed that females reported a significantly greater level of caregiving strain than males. When considering source of support in activities of daily living for the care recipient, differential assistance was noted on the basis of caregiver gender. Female caregivers had almost twice the odds of providing support in toileting-related tasks than male caregivers, while male caregivers had approximately twice the odds of providing support in mobility-related tasks. Care recipients who had a female caregiver had lower odds of receiving support from family and friends in tasks associated with personal care. To address gender differences in caregiving, a realistic home-based palliative care approach must take into account the importance of informal caregivers.
2009
Brazil K
Health & Social Care in the Community
2009
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1111/j.1365-2524.2008.00813.x" target="_blank" rel="noreferrer">10.1111/j.1365-2524.2008.00813.x</a>
Families' experiences of caring for technology-dependent children: a temporal perspective
Children; PedPal Lit; Adolescent Caregivers/psychology ChildDisabled Children EnglandEquipment and SuppliesFamily Home Nursing Humans Male Research Support; and who provided technical care during the day and/or at night at home and in other settings. While the children's health and quality of life benefited from the technology; better coordinat(TRUNCATED); depending on the type and number of devices used; dialysis machines and ventilators. Using mainly qualitative methods; employment and social life in general. The need to use and oversee the use of some medical technologies at night also meant that many parents suffered regular disruption to their sleep. In conclusion; families' experiences of caring for a technology-dependent child were examined from a temporal perspective. This involved exploring the multiple 'technological'; limiting their participation in school; Non-U.S. Gov't%X In the present study; parents and siblings were interviewed to establish what the care routines involved and how these impacted on family members. The authors found that the rhythms and routines of care varied across the sample; suction machines; the individual child's needs; the t ime demands of the care routines and lack of compatibility with other social and institutional timeframes had some negative implications for the children and their families
2005
Heaton J; Noyes J; Sloper P; Shah R
Health & Social Care in the Community
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1111/j.1365-2524.2005.00571.x" target="_blank" rel="noreferrer">10.1111/j.1365-2524.2005.00571.x</a>
Desired outcomes for children and young people with complex health care needs, and children who do not use speech for communication
Communication Barriers; Preschool; Non-U.S. Gov't; PedPal Lit; Adolescent Child Child; Disabled Persons Female Great Britain; Health Services Needs and Demand Humans Infant Infant; Newborn Interviews Male; Outcome Assessment (Health Care) Research Support
2005
Rabiee P; Sloper P; Beresford B
Health & Social Care in the Community
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1111/j.1365-2524.2005.00578.x" target="_blank" rel="noreferrer">10.1111/j.1365-2524.2005.00578.x</a>
Decision-making in community-based paediatric physiotherapy: a qualitative study of children, parents and practitioners
Non-U.S. Gov't; PedPal Lit; Cerebral PalsyCommunity Health ServicesDecision Making England Female Focus Groups Humans Interviews Male Parents/psychologyPediatricsPhysical Therapy Modalities Physicians; Family/psychology Research Support
Approaches to practice based on partnership and shared decision-making with patients are now widely recommended in health and social care settings, but less attention has been given to these recommendations in children's services, and to the decision-making experiences of non-medical practitioners and their patients or clients. This study explored children's, parents' and practitioners' accounts of shared decision-making in the context of community-based physiotherapy services for children with cerebral palsy. Semi-structured interviews were conducted with 11 children with cerebral palsy living in an inner city area of northern England, and with 12 of their parents. Two focus groups were conducted with 10 physiotherapy practitioners. Data were analysed using the constant comparative method. When asked explicitly about decision-making, parents, children and practitioners reported little or no involvement, and each party saw the other as having responsibility for decisions. However, when talking in more concrete terms about their experiences, each party did report some involvement in decision-making. Practitioners' accounts focused on their responsibility for making decisions about resource allocation, and thereby, about the usefulness and intensity of interventions. Parents indicated that these practitioner-led decisions were sometimes in conflict with their aspirations for their child. Parents and children appeared to have most involvement in decisions about the acceptability and implementation of interventions. Children's involvement was more limited than parents'. While parents could legitimately curtail unacceptable interventions, children were mostly restricted to negotiating about how interventions were implemented. In these accounts the involvement of each party varied with the type of issue being decided and decision-making appeared more unilateral than shared. In advocating shared decision-making, greater understanding of its weaknesses as well as its strengths, and greater clarity about the domains that are suitable for a shared decision-making approach and the roles of different parties, would seem a helpful step.
2006
Young B; Moffett JK; Jackson D; McNulty A
Health & Social Care in the Community
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1111/j.1365-2524.2006.00599.x" target="_blank" rel="noreferrer">10.1111/j.1365-2524.2006.00599.x</a>
Applying the Delphi technique in a study of GPs' information requirements
Delphi Technique
This article describes some dilemmas and problems encountered in a Delphi study of general practitioners' (GPs) information requirements. The research involved a three-round Delphi administered to an expert panel of 50 GPs in one Welsh health authority area. The Delphi is generally perceived as a qualitative METHOD: However, we argue that the requirements of the technique make it difficult to sustain the kind of inductive analysis - faithfully reflecting respondents' perspectives - that is axiomatic to many of the theoretical approaches that underpin qualitative inquiry. We describe how our attempts to incorporate respondents' views in near-verbatim form in the first round were undermined by the need to classify and reduce statements for later rounds, and to impose judgments about what should count as consensus. The iterative 'consensus-building' process, that is so central to the Delphi, was difficult to take forward without active intervention by the research team, but this involved a re-ordering and reduction of the data, which moved the statements included in later rounds further and further from the verbatim responses on which they were based. Whilst the findings of the study were useful on one level, the final consensus statements took a general, virtually context-free form, which contained few references to background preoccupations (largely concerned with the recent NHS reforms) that were exercising GPs at this time. The method also coped badly with the polarized opinions that existed regarding the development of information systems for commissioning. We conclude that the Delphi is best used for large-scale research in areas where opinions are well established, where the problems and choices confronting the study group are well known, and where a major programme of organizational reform is not already underway.
1999
Green B; Jones M; Hughes D; Williams A
Health & Social Care in the Community
1999
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1046/j.1365-2524.1999.00176.x" target="_blank" rel="noreferrer">10.1046/j.1365-2524.1999.00176.x</a>