Attitudes of Muslims Living in the United States Toward Long‐Term Care Decisions and Diagnosis Disclosure for Elderly Family Members

Abstract

This study explored the attitudes of Muslims living in the United States toward long-term care decisions and diagnostic disclosure. Members of six mosques in New Jersey aged 40 and older agreed to participate in a telephone interview. Respondents were read medical scenarios and asked to indicate their preferences from a list of responses. Scenarios were: if they or a family member were disabled, who would they prefer to care for them; would they use a Muslim nursing home for themselves or loved one; who should be informed first if an individual had cancer or would die very soon (the individual or the individual's family); and whether these diagnoses should be disclosed to the individual's family without the individual's consent. If disabled, 62% (n = 103) of participants would prefer care at home, and 65.7% (n = 108) would prefer care at home for a disabled loved one. If there were a Muslim nursing home, 78.3% (n = 103) of participants would consider this facility for themselves and 76% (n = 127) would consider it for a loved one. Fifty-six percent (n = 93) of participants believed the individual should be informed first of a cancer diagnosis, and 54.6% (n = 89) believed the individual should be informed first if their death was imminent. Disclosing an individual's cancer diagnosis to family members without the individual's consent was acceptable to 49.7% (n = 83) and disclosing his or her imminent death was acceptable to 55.1% (n = 92). Participants were from 21 countries. Participants from Western countries were most likely to believe individuals should be informed first about their cancer diagnosis or imminent death.

Access to Long-Term Care for Minority Populations: A Systematic Review

“…We screened 191 studies at the full-text stage and selected 59 studies for inclusion. Of the 60 studies, 42 were conducted in the United States (Ahmed, Ali, Lefante, Mullick, & Kinney, 2006;Ahmed, Allman, & DeLong, 2003;Akamigbo, 2007;Akamigbo & Wolinsky, 2006Andel, Hyer, & Slack, 2007;Angel, Angel, Aranda, & Miles, 2004;Angel, Douglas, & Angel, 2003;Angelelli, Grabowski, & Mor, 2006;Aykan, 2002;Baxter, Bryant, Scarbro, & Shetterly, 2001;Berridge & Mor, 2017;Cai, Salmon, & Rodgers, 2009;Duffy, Jackson, Schim, Ronis, & Fowler, 2006;Feng, Fennell, Tyler, Clark, & Mor, 2011;Friedman, Steinwachs, Rathouz, Burton, & Mukamel, 2005;Gandhi, Lim, Davis, & Chen, 2017;Gaugler, Kane, Kane, & Newcomer, 2006;Gaugler, Leach, Clay, & Newcomer, 2004;Goodwin, Howrey, Zhang, & Kuo, 2011;Harris, 2007;Harris & Cooper, 2006;Iwasaki, Pierson, Madison, & McCurry, 2016;Jackson, Johnson, & Roberts, 2008;Jang, Kim, Chiriboga, & Cho, 2008;Kersting, 2001a,b;Liu, Wissoker, & Swett, 2007;McCormick et al, 2002;McLaughlin, Elahi, Ciesielski, & Pomerantz, 2016;Miller, Schneider, & Rosenheck, 2011;Min, 2005;Putney, Keary, Hebert, Krinsky, & Halmo, 2018;Quigley, 2017;Riley, 2019;…”

“…We screened 191 studies at the full-text stage and selected 59 studies for inclusion. Of the 60 studies, 42 were conducted in the United States (Ahmed, Ali, Lefante, Mullick, & Kinney, 2006; Ahmed, Allman, & DeLong, 2003; Akamigbo, 2007; Akamigbo & Wolinsky, 2006, 2007; Andel, Hyer, & Slack, 2007; Angel, Angel, Aranda, & Miles, 2004; Angel, Douglas, & Angel, 2003; Angelelli, Grabowski, & Mor, 2006; Aykan, 2002; Baxter, Bryant, Scarbro, & Shetterly, 2001; Berridge & Mor, 2017; Cai, Salmon, & Rodgers, 2009; Duffy, Jackson, Schim, Ronis, & Fowler, 2006; Feng, Fennell, Tyler, Clark, & Mor, 2011; Friedman, Steinwachs, Rathouz, Burton, & Mukamel, 2005; Gandhi, Lim, Davis, & Chen, 2017; Gaugler, Kane, Kane, & Newcomer, 2006; Gaugler, Leach, Clay, & Newcomer, 2004; Goodwin, Howrey, Zhang, & Kuo, 2011; Harris, 2007; Harris & Cooper, 2006; Iwasaki, Pierson, Madison, & McCurry, 2016; Jackson, Johnson, & Roberts, 2008; Jang, Kim, Chiriboga, & Cho, 2008; Kersting, 2001a,b; Liu, Wissoker, & Swett, 2007; McCormick et al, 2002; McLaughlin, Elahi, Ciesielski, & Pomerantz, 2016; Miller, Schneider, & Rosenheck, 2011; Min, 2005; Putney, Keary, Hebert, Krinsky, & Halmo, 2018; Quigley, 2017; Riley, 2019; Rodriguez, 2004; Sharma, 2017; Spillman & Long, 2009; Stein, Beckerman, & Sherman, 2010; Stevens et al, 2004; Temple, Andel, & Dobbs, 2010; Yaffe et al, 2002), seven in Canada (Brotman, Ryan, & Cormier, 2003; Forgues, Doucet, & Noël, 2011; Gui & Koropeckyj-Cox, 2016; Kortes-Miller, Boulé, Wilson, & Stinchcombe, 2018; Lai, 2004; Metz, 2007; Qureshi et al, 2021), three in Norway (Arora, Rechel, Bergland, Straiton, & Debesay, 2020; Czapka & Sagbakken, 2020; Hanssen & Tran, 2018), two in Australia (Basic, Shanley, & Gonzales, 2017; Waling et al, 2019), two in Sweden (Heikkilä & Ekman, 2003; Innes, 2020), and one each in Belgium (Ahaddour, van den Branden, & Broeckaert, 2016…”

“…Of the 60 studies, 33 studies were rated as being of excellent quality (Akamigbo, 2007; Akamigbo & Wolinsky, 2006, 2007; Arora et al, 2020; Basic et al, 2017; Berridge & Mor, 2017; Brotman et al, 2003; Cai et al, 2009; Chui et al, 2019; Chung et al, 2008; Czapka & Sagbakken, 2020; Friedman et al, 2005; Gandhi et al, 2017; Gaugler et al, 2006; Gui & Koropeckyj-Cox, 2016; Harris, 2007; Harris & Cooper, 2006; Heikkilä & Ekman, 2003; Liu et al, 2007; McCormick et al, 2002; Metz, 2007; Miller et al, 2011; Min, 2005; Putney et al, 2018; Quigley, 2017; Qureshi et al, 2021; Riley, 2019; Rodriguez, 2004; Sharma, 2017; Spillman & Long, 2009; Stein et al, 2010; Stevens et al, 2004; Yaffe et al, 2002), 22 were rated good quality (Ahmed et al, 2003, 2006; Andel et al, 2007; Angel et al, 2003, 2004; Aykan, 2002; Forgues et al, 2011; Gaugler et al, 2004; Goodwin et al, 2011; Hanssen & Tran, 2018; Herat-Gunaratne et al, 2020; Iwasaki et al, 2016; Jackson et al, 2008; Jenkins Morales & Robert, 2020; Kersting, 2001a,b; Kortes-Miller et al, 2018; Lai, 2004; McLaughlin et al, 2016; Tenand et al, 2020; Travers, Hirschman, & Naylor, 2020; Waling et al, 2019), and 5 were rated fair quality (Appendix 6) (Ahaddour et al, 2016; Innes, 2020; Jang et al, 2008; Lehnert, Heuchert, Hussain, & König, 2019; Mahieu, Cavolo, & Gastmans, 2019).…”

“…Twenty-seven studies evaluated expectations and preferences of different populations with regards to future long-term care placement (Table 3) (Ahaddour et al, 2016; Akamigbo & Wolinsky, 2006; Arora et al, 2020; Chui et al, 2019; Chung et al, 2008; Czapka & Sagbakken, 2020; Duffy et al, 2006; Forgues et al, 2011; Gui & Koropeckyj-Cox, 2016; Hanssen & Tran, 2018; Heikkilä & Ekman, 2003; Herat-Gunaratne et al, 2020; Iwasaki et al, 2016; Jackson et al, 2008; Jang et al, 2008; Kortes-Miller et al, 2018; Lai, 2004; McCormick et al, 2002; McLaughlin et al, 2016; Metz, 2007; Min, 2005; Putney et al, 2018; Quigley, 2017; Rodriguez, 2004; Stein et al, 2010; Travers et al, 2020; Waling et al, 2019). Fourteen studies were conducted in the United States (Akamigbo & Wolinsky, 2006; Duffy et al, 2006; Iwasaki et al, 2016; Jackson et al, 2008; Jang et al, 2008; McCormick et al, 2002; McLaughlin et al, 2016; Min, 2005; Putney et al, 2018; Quigley, 2017; Riley, 2019; Rodriguez, 2004; Stein et al, 2010; Travers et al, 2020), six in Canada (Brotman et al, 2003; Forgues et al, 2011; Gui & Koropeckyj-Cox, 2016; Kortes-Miller et al, 2018; Lai, 2004; Metz, 2007), three in Norway (Arora et al, 2020; Czapka & Sagbakken, 2020; Hanssen & Tran, 2018) and one each in Australia (Waling et al, 2019), Belgium (Ahaddour et al, 2016), Hong Kong (Chui et al, 2019), Sweden (Heikkilä & Ekman, 2003), Taiwan (Chung et al, 2008), and the United Kingdom, England (Herat-Gunaratne et al, 2020). Eleven studies used quantitative analyses (i.e., surveys or questionnaires) (Akamigbo & Wolinsky, 2006; Chung et al, 2008; Iwasaki et al, 2016; Jackson et al, 2008; Jang et al, 2008; Kortes-Miller et al, 2018; Lai, …”

“…Twenty-seven studies evaluated expectations and preferences of different populations with regards to future long-term care placement (Table 3) (Ahaddour et al, 2016;Akamigbo & Wolinsky, 2006;Arora et al, 2020;Chui et al, 2019;Chung et al, 2008;Czapka & Sagbakken, 2020;Duffy et al, 2006;Forgues et al, 2011;Gui & Koropeckyj-Cox, 2016;Hanssen & Tran, 2018;Heikkilä & Ekman, 2003;Herat-Gunaratne et al, 2020;Iwasaki et al, 2016;Jackson et al, 2008;Jang et al, 2008;Kortes-Miller et al, 2018;Lai, 2004;McCormick et al, 2002;McLaughlin et al, 2016;Metz, 2007;Min, 2005;Putney et al, 2018;Quigley, 2017;Rodriguez, 2004;Stein et al, 2010;Travers et al, 2020;Waling et al, 2019). Fourteen studies were conducted in the United States (Akamigbo & Wolinsky, 2006;Duffy et al, 2006;Iwasaki et al, 2016;Jackson et al, 2008;Jang et al, 2008;McCormick et al, 2002;McLaughlin et al, 2016;Min, 2005;Putney et al, 2018;Quigley, 2017;Riley, 2019;…”