“There were more decisions and more options than just yes or no”: Evaluating a decision aid for advanced cancer patients and their family caregivers

Abstract

The Looking Ahead PtDA was well received and helped patients with a serious illness realize the importance of prospective decision making in guiding their treatment pathways. We found that this PtDA can help seriously ill patients prior to the end of life to understand and discuss future healthcare decision making. However, systems to routinely provide PtDAs to seriously ill patients are yet not well developed.

Supporting family caregiver engagement in the care of old persons living in hard to reach communities: A scoping review

“…For the quantitative measures, five studies (36%) proposed scales on caregiver learning linked with proposed educational interventions. Bakitas et al () used a questionnaire containing questions about how much of the program subjects had viewed, the length of time they engaged in the program, and the clarity of the language. Kaye, Crittenden, Kelly, and Boylan () used the Geriatric Social Work Competency Scale II with Life‐long Leadership Skills in order to understand the assessments of acquired gerontological social work competencies after the implementation of the program.…”

Advance care planning: A systematic review about experiences of patients with a life-threatening or life-limiting illness

“…The mean score of the methodological quality of the qualitative studies [28][29][30][31][32][33][34][41][42][43][44][45][46][47][48][49][50][51][52] , according to the CASP, was 8 out of 10 (range: 6.5-9.5). Main issues concerned limitations describing ethical issues 30,33,34,[41][42][43][44][45]47,49,51,52 and the lack of information concerning the relationship between (qualitative or focus group$ or case stud$ or field stud$ or interview$ or questionnaire$ or survey$ or ethnograph$ or grounded theory or action research or 'participant observation' or narrative$ or (life and (history or stor$)) or verbal interaction$ or discourse analysis or narrative analysis or social construct$ or purposive sampl$ or phenomenol$ or criterion sampl$ or 'story telling' or (case adj (study or studies)) or 'factor analysis' or 'self-report' or (conversation adj2 analys*)).ti,ab,kw,hw. exp qualitative research/data collection method/ or exp interview/ or exp questionnaire/ health care survey/self-report/nursing methodology research/exp ethnography/discourse analysis/((advance adj preferences) or 'advance care planning' or advance directive* or living will* or end-of-life planning or (future care adj3 planning)).ti,ab,kw,hw.…”

“…exp Questionnaires/exp Self Report/exp Surveys/exp Ethnography/exp Grounded Theory/exp Phenomenology/ qualitative research/ or exp interviews/ or observation methods/((advance adj preferences) or 'advance care planning' or advance directive* or living will* or end-of-life planning or (future care adj3 planning)).ti,ab,hw,id. Cinahl search (EBSCOhost) SU ((qualitative or focus group* or case stud* or field stud* or interview* or questionnaire* or survey* or ethnograph* or grounded theory or action research or 'participant observation' or narrative* or (life and (history or stor*)) or verbal interaction* or discourse analysis or narrative analysis or social construct* or purposive sampl* or phenomenol* or criterion sampl* or 'story telling' or (case N1 (study or studies)) or 'factor analysis' or 'self-report') OR (conversation N2 analys*)) AB ((qualitative or focus group* or case stud* or field stud* or interview* or questionnaire* or survey* or ethnograph* or grounded theory or action research or 'participant observation' or narrative* or (life and (history or stor*)) or verbal interaction* or discourse analysis or narrative analysis or social construct* or purposive sampl* or phenomenol* or criterion sampl* or 'story telling' or (case N1 (study or studies)) or 'factor analysis' or 'self-report') OR (conversation N2 analys*)) TI ((qualitative or focus group* or case stud* or field stud* or interview* or questionnaire* or survey* or ethnograph* or grounded theory or action research or 'participant observation' or narrative* or (life and (history or stor*)) or verbal interaction* or discourse analysis or narrative analysis or social construct* or purposive sampl* or phenomenol* or criterion sampl* or 'story telling' or (case N1 (study or studies)) or 'factor analysis' or 'self-report') OR (conversation N2 analys*)) (MH 'Qualitative Studies +')(MH 'Clinical Assessment Tools +') OR (MH 'Questionnaires +') OR (MH 'Interview Guides +')(MH 'Surveys')(MH 'Interviews +')(MH 'Self Report')(MH 'Advance Care Planning') TI((advance adj preferences) or 'advance care planning' or advance directive* or living will* or end-of-life planning or (future care N3 planning)) AB((advance adj preferences) or 'advance care planning' or advance directive* or living will* or end-of-life planning or (future care N3 planning)) SU((advance adj preferences) or 'advance care planning' or advance directive* or living will* or end-of-life planning or (future care N3 planning)) excluding MEDLINE records researchers and respondents [28][29][30][32][33][34]41,42,44,[46][47][48][49][50]52 ( Table 2). The quality of the mixed-method study 53 was 29 (out of 36) according to the scale of Hawker (Table 3).…”

“…Of the 20 articles selected, [28][29][30][31][32][33][34][41][42][43][44][45][46][47][48][49][50][51][52][53] 19 had a qualitative study design [28][29][30][31][32][33][34][41][42][43][44][45][46][47][48][49][50][51][52] and one a mixed-methods design. 53 All included studies were conducted in Western countries, mostly in Canada (n = 6) ( Table 4).…”

Bridging the Cultural Divide Between Oncology and Palliative Care Subspecialties: Clinicians’ Perceptions on Team Integration

“…36 This allowed patients to better cope with uncertainty by developing problem-solving skills and using decision aids to better manage their illness and guide treatment and end-of-life decisions. 37,38 The results of our qualitative study informed a multicentered, randomized clinical trial testing a nurse-led telephonebased palliative care intervention for patients newly diagnosed with lung cancer at the Department of Veterans Affairs in the Birmingham, Portland, and Puget Sound Health Care Systems (Clinical Trials Identification Number NCT03007953). The study is currently recruiting patients and aims to improve symptom burden, quality of life, and patient satisfaction of care.…”