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Burden and Needs of Patients with Severe GvHD from the Supportive and Palliative Care Perspective—A Literature ReviewWenzel, Freya, Pralong, Anne, Holtick, Udo, Scheid, Christoph, Herling, Marco, Simon, Steffen T. 26 April 2023 (has links)
Graft-versus-host disease (GvHD) is a frequent, and often life-threatening, complication after an allogeneic, hematopoietic stem cell transplantation (allo-SCT). It can appear in an acute or a chronic form and presents different grades of severity. Particularly, the severe forms of GvHD are often responsible for a change of the curative intent for allo-SCT into a palliative goal of care. For this non-systematic review, we conducted a focused literature search in the MEDLINE database via PubMed to examine whether patients with severe forms of GvHD might have special needs and burdens from a supportive and palliative care perspective. To draw a comprehensive picture of this patient group, we included findings on quality of life (QoL) and physical symptoms and function as well as psychological and spiritual well-being. In most domains, patients with severe forms of GvHD showed greater impairment and a higher symptom burden compared to patients with milder forms of GvHD. However, we could not identify any studies that specifically investigated patients with severe forms of GvHD. Further research in this field is necessary to guarantee the highest standard of care for this very special patient group.
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A supportive care model for mothers of children with intellectual disabilities in selected health institutions of Limpopo Province, South AfricaRaliphaswa, Ndidzulafhi Selina 21 September 2018 (has links)
PhD (Health Sciences) / Department of Advanced Nursing Science / Disability is the most painful experience for the mother and relatives when a child is
born. This is because every parent expects a normal child once a woman conceives.
For a mother to be able to cope with their children they need to be supported
emotionally, psychologically and physically by the family members, community, and
health care professionals and other support service providers.The overall purpose of the
study was to develop a model to support mothers of children with intellectual disabilities
in selected institutions of Limpopo Province.An exploratory sequential mixed method
was employed which includes both qualitative and quantitative approaches to guide the
study.Population was all mothers of children with intellectual disabilitiesand health care
professionals from the selected institutions where the research was conducted. Health
care professionals were purposively selected whereas mothers were conveniently
selected. The study was carried out in two phases i.e Phase1(a & b) and Phase 2.
Qualitative results were used to build a subsequent quantitative phase. In Phase 1a,a
qualitative approach was employed using descriptive and exploratory designs.
Qualitative data was collected through individual interviews.Data analyses were done
utilising Tesch’s open coding method.In Phase 1b was quantitative approach wherein a
cross-sectional descriptive design was used.Questionnaireswere developed and data
were collected from the health care professionals in the selected study areas.Data
analyses were done using the Statistical Package for the Social Sciences (SPSS)
version 24 and the level of statistical difference being set at p<0,05.In Phase 2, concept
analysis, model development and validation of the model were performed. Themes and
sub- themes were identified from the analysed data. Current study revealed that some
mothers were fully supported and some were not supported at all by both the family,
friends, relatives, community members and health care professionals. Hence
continuous support was seen to be very crucial to them.The study recommendations
include: open communication, social, psychological and emotional support, combined
available support services, access to special schools and formulation of support groups. / NRF
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