Another form to fill in! Clients’ reflections on the hospice use of questionnaires

McGrath, Pam; Moore, Alex; McNaught, Meg; Palmer, Gail; Greene, Anne Marie; Atkinson, Dawn

doi:10.1007/s00520-005-0795-6

Cited by 13 publications

(7 citation statements)

References 20 publications

(21 reference statements)

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“…Other studies participants have also commented that study questionnaires were ‘depressing’ or difficult to answer due to their ‘black/white’ choices. (40)…”

Section: Discussionmentioning

confidence: 99%

Patient perspectives on participation in the ENABLE II randomized controlled trial of a concurrent oncology palliative care intervention: Benefits and burdens

Maloney

Lyons

et al. 2012

Palliat Med

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Background ENABLE (Educate, Nurture, Advise Before Life Ends) II was one of the first randomized controlled trials (RCTs) examining the effects of a concurrent oncology palliative care intervention on quality of life, mood, and symptom control for advanced cancer patients and their caregivers. However, little is known about how participants experience early palliative care and the benefits and burdens of participating in a palliative care clinical trial. Aim To gain a deeper understanding of participants’ perspectives about the intervention and palliative care trial participation. Design A qualitative descriptive study using thematic analysis to determine benefits and burdens of a new palliative care intervention and trial participation. Setting/Participants Of the 72 participants who were alive when the study commenced, 53 agreed to complete an in-depth, semi-structured interview regarding the ENABLE II intervention and clinical trial participation. Results Participants’ perceptions of intervention benefits were represented by four themes: enhanced problem-solving skills, better coping, feeling empowered, and feeling supported or reassured. Three themes related to trial participation: helping future patients and contributing to science, gaining insight through completion of questionnaires, and trial/intervention aspects to improve. Conclusions The benefits of the intervention and the positive aspects of trial participation outweighed trial “burdens”. This study raises additional important questions relevant to future trial design and intervention development: when should a palliative care intervention be initiated and what aspects of self-care and healthy living should be offered in addition to palliative content for advanced cancer patients when they are feeling well?

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“…Other studies participants have also commented that study questionnaires were ‘depressing’ or difficult to answer due to their ‘black/white’ choices. (40)…”

Section: Discussionmentioning

confidence: 99%

Patient perspectives on participation in the ENABLE II randomized controlled trial of a concurrent oncology palliative care intervention: Benefits and burdens

Maloney

Lyons

et al. 2012

Palliat Med

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“…The hospice staff in the study came to the conclusion that the very people they would not want to use Qs with are the emotionally fragile and vulnerable. As outlined in detail in another article from the study (McGrath et al., 2005) the findings from the staff resonate with the clients’ experiences.…”

Section: Summary Of Findingsmentioning

confidence: 62%

“…As one response to the lack of research in this area, the following are the findings from seminal work, which examined the impact of the use of Qs with clients from a holistic, community‐based hospice service. The results of the patients and carers’ experience with Qs, along with full details of the methodology used in the research project, are published elsewhere (McGrath et al., 2005): the present discussion focuses singularly on the staff experience.…”

mentioning

confidence: 99%

Making Them More Vulnerable: Nursing Insights on the Irony of Using Questionnaires

McGrath

Phillips

2007

Nursing Forum

Self Cite

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“…However, we should note that up to 10.3% of patients are not willing to say farewell. The reason may be that Chinese people, in addition to their unwillingness to engage in ''tick box'' exercise, 4,35,36 are not good at expressing emotion, having not met the trusted expressing recipient, or still not feeling the inner peace in the process of emotion expressing.…”

Section: Discussionmentioning

confidence: 99%

Expectation in Life Review

Deng

Liu³

et al. 2014

Am J Hosp Palliat Care

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Terms such as spirituality and spiritual needs are abstract and difficult to understand. Realization of spirituality of hospice patients was premise in addressing expression of their spiritual needs. This study investigated expectations expressed during life review and tried to prove that the expectation was intelligible term for spiritual needs in Chinese hospice from May 2011 to June 2013. Among the 107 recruited patients, families were the most frequent emotion-expressing recipients, and 133 expectations related to patients' spiritual needs were identified. The emotion-expressing recipients and the patient's expectations were not affected by demographic characteristics. The expectations in life review with hospice patients and their families had the features of spiritual essence. The identified expectation contents could be used to address spiritual needs in hospice care in Chinese.

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Another form to fill in! Clients’ reflections on the hospice use of questionnaires

Abstract: Questionnaires should not be seen as an unqualified good, and thus should not be automatically accepted as best practice within hospice or palliative care service provision.

Cited by 13 publications

References 20 publications

Patient perspectives on participation in the ENABLE II randomized controlled trial of a concurrent oncology palliative care intervention: Benefits and burdens

Patient perspectives on participation in the ENABLE II randomized controlled trial of a concurrent oncology palliative care intervention: Benefits and burdens

Making Them More Vulnerable: Nursing Insights on the Irony of Using Questionnaires

Expectation in Life Review

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