scholarly journals The supportive care needs of parents caring for a child with a rare disease: A scoping review

2015 ◽  
Vol 8 (4) ◽  
pp. 475-491 ◽  
Author(s):  
Lemuel J. Pelentsov ◽  
Thomas A. Laws ◽  
Adrian J. Esterman
Keyword(s):  
Supportive Care ◽  
Rare Disease ◽  
Scoping Review ◽  
Supportive Care Needs ◽  
Care Needs

scholarly journals The supportive care needs of parents with a child with a rare disease: results of an online survey

2016 ◽  
Vol 17 (1) ◽  
Author(s):  
Lemuel J. Pelentsov ◽  
Andrea L. Fielder ◽  
Thomas A. Laws ◽  
Adrian J. Esterman
Keyword(s):  
Supportive Care ◽  
Rare Disease ◽  
Online Survey ◽  
Supportive Care Needs ◽  
Care Needs

The supportive care needs of individuals recovering from first episode psychosis: A scoping review

2018 ◽  
Vol 55 (1) ◽  
pp. 6-14 ◽  
Author(s):  
Ellen L. Davies ◽  
Andrea L. Gordon ◽  
Lemuel J. Pelentsov ◽  
Adrian J. Esterman
Keyword(s):  
Supportive Care ◽  
Scoping Review ◽  
First Episode Psychosis ◽  
Supportive Care Needs ◽  
First Episode ◽  
Care Needs ◽  
Episode Psychosis

Patients' Supportive Care Needs Beyond the End of Cancer Treatment: A Prospective, Longitudinal Survey

2009 ◽  
Vol 27 (36) ◽  
pp. 6172-6179 ◽  
Author(s):  
Jo Armes ◽  
Maggie Crowe ◽  
Lynne Colbourne ◽  
Helen Morgan ◽  
Trevor Murrells ◽  
...  
Keyword(s):  
Negative Affect ◽  
Supportive Care ◽  
Unmet Needs ◽  
Unmet Need ◽  
Hormone Treatment ◽  
Longitudinal Survey ◽  
Supportive Care Needs ◽  
Fear Of Recurrence ◽  
Care Needs ◽  
Prospective Longitudinal

Purpose To estimate prevalence and severity of patients' self-perceived supportive care needs in the immediate post-treatment phase and identify predictors of unmet need. Patients and Methods A multicenter, prospective, longitudinal survey was conducted. Sixty-six centers recruited patients for 12 weeks. Patients receiving treatment for the following cancers were recruited: breast, prostate, colorectal, and gynecologic cancer and non-Hodgkin's lymphoma. Measures of supportive care needs, anxiety and depression, fear of recurrence, and positive and negative affect were completed at the end of treatment (T0) and 6 months later (T1). Results Of 1,850 patients given questionnaire packs, 1,425 (79%) returned questionnaires at T0, and 1,152 (62%) returned questionnaires at T1. Mean age was 61 years; and most respondents were female (69%) and had breast cancer (57%). Most patients had no or few moderate or severe unmet supportive care needs. However, 30% reported more than five unmet needs at baseline, and for 60% of these patients, the situation did not improve. At both assessments, the most frequently endorsed unmet needs were psychological needs and fear of recurrence. Logistic regression revealed several statistically significant predictors of unmet need, including receipt of hormone treatment, negative affect, and experiencing an unrelated significant event between assessments. Conclusion Most patients do not express unmet needs for supportive care after treatment. Thirty percent reported more than five moderate or severe unmet needs at both assessments. Unmet needs were predicted by hormone treatment, negative mood, and experiencing a significant event. Our results suggest that there is a proportion of survivors with unmet needs who might benefit from the targeted application of psychosocial resources.

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