Works Cited

1. Meyerstein I. Sustaining our spirits: spiritual study/discussion groups for coping with medical illness. J Religion Health. 2005;44(2):207-225.

2. Streltzer J (ed). Culture and Psychopathology: A Guide to Clinical Assessment. 2nd ed. New York, NY: Routledge; 2016.

3. Larsen PD. Chronicity. In: Larsen PD (ed). Lubkin's Chronic Illness: Impact and Interventions. 10th ed. Sudbury, MA: Jones and Bartlett Publishers; 2017: 3-18.

4. Kleinman A. Social Origins of Distress and Disease: Depression, Neurasthenia, and Pain in Modern China. New Haven, CT: Yale University Press; 1988.

5. Larsen PD. The illness experience. In: Larsen PD (ed). Lubkin's Chronic Illness: Impact and Interventions. 10th ed. Sudbury, MA: Jones and Bartlett Publishers; 2017: 19-38.

6. Sidell NL. Adult adjustment to chronic illness: a review of the literature. Health Soc Work. 1997;22(1):5-11.

7. Miller JF. Coping with Chronic Illness: Overcoming Powerlessness. 3rd ed. Philadelphia, PA: F.A. Davis Company; 1999.

8. National Center for Chronic Disease Prevention and Health Promotion. The Power of Prevention. Available at https://www.cdc.gov/chronicdisease/pdf/2009-power-of-prevention.pdf. Last accessed May 17, 2021.

9. Coffey JS. Parenting a child with chronic illness: a metasynthesis. Pediatr Nurs. 2006;32(1):51-59.

10. Hoff LA. Threats to health status and self-image. In: Hoff LA, Hallisey BJ, Hoff M (eds). People in Crisis: Clinical and Diversity Perspectives. 6th ed. New York, NY: Routledge; 2009: 225-268.

11. Hoff LA. Understanding people in crisis. In: Hoff LA, Hallisey BJ, Hoff M (eds). People in Crisis: Clinical and Diversity Perspectives. 6th ed. New York, NY: Routledge; 2009: 37-66.

12. James RK, Gilliland BE. Crisis Intervention Strategies. 7th ed. Belmont, CA: Brooks/Cole; 2013.

13. Stanton AL, Revenson TA, Tennen H. Health psychology: psychological adjustment to chronic disease. Annu Rev Psychol. 2007;58:565-592.

14. Golan N. Identifying and defining the crisis situations. In: Golan N (ed). Treatment in Crisis Situation: Treatment Approaches in the Human Services. New York, NY: The Free Press; 1978: 61-79.

15. Myer RA, Williams RC, Haley M, Brownfield JN, McNicols KB, Pribozie N. Crisis intervention with families: assessing changes in family characteristics. The Family Journal. 2014;22(2):179-185.

16. Roberts AR. Contemporary Perspectives on Crisis Intervention and Prevention. Englewood Cliffs, NJ: Prentice Hall; 1991.

17. Popp JM, Robinson JL, Britner PA, Blank TO. Parent adaptation and family functioning in relation to narratives of children with chronic illness. J Pediatr Nurs. 2014;29(1)58-64.

18. Rolland, JS. Chronic illness and the life cycle: a conceptual framework. Fam Process. 1987;26(2):203-221.

19. Newby NM. Chronic illness and the family life-cycle. J Adv Nurs. 1996;23(4):786-791.

20. Patterson JM, Garwick AW. The impact of chronic illness on families: a family perspective. Ann Behav Med. 1994;16(2):131-142.

21. Kaplan SG, Arnold EM, Irby MB, Boles KA, Skelton JA. Family Systems theory and obesity treatment: applications for clinicians. Infant Child Adolesc Nutr. 2014;6(1):24-29.

22. Berry JO, Hardman ML. The family as an interactive unit. In: Berry JO, Hardman ML (eds). Lifespan Perspectives on the Family and Disability. 2nd ed. Dallas, TX: Pro-Ed, Inc.; 2008.

23. Berg CA, Upchurch R. A developmental-contextual model of couples coping with chronic illness across the adult life span. Psychol Bull. 2007;133(6):920-954.

24. Falicov CJ. MECA: a meeting place for culture and therapy. In: Falicov CJ (ed). Latino Families in Therapy. 2nd ed. New York, NY: The Guilford Press; 2013: 17-50.

25. Sue DW, Sue D. Counseling the Culturally Diverse: Theory and Practice. 6th ed. Hoboken, NJ: John Wiley and Sons; 2013.

26. Smith-Acuña S. Systems Theory in Action: Applications to Individual, Couple, and Family Therapy. Hoboken, NJ: John Wiley and Sons; 2011.

27. Boss PG. The reconstruction of family life with Alzheimer's disease: generating theory to lower family stress from ambiguous loss. In: Boss PG, Doherty WJ, LaRossa R, Schumm WR, Steinmetz SK (eds). Sourcebook of Family Theories and Methods: A Contextual Approach. New York, NY: Springer Science and Business Media, Inc.; 1993: 163-166.

28. Atkin K, Ahmad WI. Family care-giving and chronic illness: how parents cope with a child with a sickle cell disorder or thalassaemia. Health Soc Care Community. 2000;8(1):57-69.

29. Cole RE, Reiss D. How Do Families Cope with Chronic Illness? New York, NY: Routledge; 2013.

30. Saltzman WR, Pynoos RS, Lester P, Layne CM, Beardslee WR. Enhancing family resilience through family narrative co-construction. Clin Child Fam Psychol Rev. 2013;16(3):294-310.

31. Gies CE. Quality of life. In: Larsen PD (ed). Lubkin's Chronic Illness: Impact and Interventions. 10th ed. Sudbury, MA: Jones and Bartlett Publishers; 2017: 129-158.

32. Livneh H, Antonak RF. Psychosocial adaptation to chronic illness and disability: a primer for counselors. J Counseling Dev. 2005;83(1):12-20.

33. Smith J, Cheater F, Bekker H. Parents' experiences of living with a child with a long-term condition: a rapid structured review of the literature. Health Expect. 2015;18(4):452-474.

34. Olshansky S. Chronic sorrow: a response to having a mentally defective child. Soc Casework. 1962;(43):190-193.

35. Geffen Mintz S. In review of: Pollin I, Golant SK. Taking charge: mastering the eight fears of chronic illness. Fam Syst Health. 1996;14(4):511-513.

36. Roberts CS, Piper L, Denny J, Cuddeback G. A support group intervention to facilitate young adults' adjustment to cancer.Health Soc Work. 1997;22(2):133-141.

37. Foley, DP. Eleven interpretations of personal suffering. J Religion Health. 1988;27(4):321-328.

38. Nicholson NR Jr. Social isolation. In: Larsen PD (ed). Lubkin's Chronic Illness: Impact and Interventions. 10th ed. Sudbury, MA: Jones and Bartlett Publishers; 2017: 57-80.

39. Woody DJ, Woody D III. Middle childhood. In: Hutchinson ED (ed). Dimensions of Human Behavior: The Changing Life Course. 5th ed. Thousand Oaks, CA: Sage Publications, Inc.; 2014: 177-220.

40. Hampel P, Rudolph H, Stachow R, Lass-Lentzsch A, Petermann F. Coping among children and adolescent with chronic illness. Anxiety Stress Coping. 2005;18(2):145-155.

41. Sawyer SM, Drew S, Yeo MS, Britto MT. Adolescents with a chronic condition: challenges living, challenges treating. Lancet. 2007;369(9571):1481-1489.

42. Decker CL. Social support and adolescent cancer survivors: a review of the literature. Psychooncology. 2007;16(1):1-11.

43. Taylor RM, Gibson F, Franck LS. The experience of living with a chronic illness during adolescence: a critical review of the literature. J Clin Nurs. 2008;17(23):3083-3091.

44. Yeo M, Sawyer SM. Strategies to promote better outcomes in young people with chronic illnesses. Ann Acad Med Singapore. 2003;32(1):36-42.

45. Larsen PD. Psychological adjustment. In: Larsen PD (ed). Lubkin's Chronic Illness: Impact and Interventions. 10th ed. Sudbury, MA: Jones and Bartlett Publishers; 2017: 39-58.

46. Erikson EH. Reflections on Dr. Borg's life cycle. In: Erikson EH (ed). Adulthood. New York, NY: W.W. Norton and Company; 1978: 1-31.

47. Rolland JS. Chronic illness and the family life cycle. In: Carter B, McGoldrick M (eds). The Expanded Family Life Cycle: Individual, Family, and Social Perspectives. 4th ed. Needham Heights, MA: Allyn and Bacon; 2010: 492-511.

48. Kreukels BPC, Steensma TD, de Vries ALC. Gender Dysphoria and Disorders of Sex Development. New York, NY: Springer; 2014.

49. Berry JO, Hardman ML. Families: day to day and across the lifespan. In: Berry JO, Hardman ML (eds). Lifespan Perspectives on the Family and Disability. 2nd ed. Dallas, TX: Pro-Ed, Inc.; 2008.

50. Baanders AN, Heijmans MJ. The impact of chronic diseases: the partner's perspective. Fam Community Health. 2007;30(4):305-317.

51. Holroyd EA, Mackenzie AE. A review of the historical and social processes contributing to care and caregiving in Chinese families. J Adv Nurs. 1995;22(3):473-749.

52. Lyons KS, Stewart BJ, Archbold PG, Carter JH. Optimism, pessimism, mutuality, and gender: predicting 10-year role strain in Parkinson's disease spouses. Gerontologist. 2009;49(3):378-387.

53. Berge JM, Patterson JM. Cystic fibrosis and the family: a review and critique of the literature. Fam Syst Health. 2004;22(1):74-100.

54. Barlow JH, Ellard DR. The psychosocial well-being of children with chronic disease, their parents and siblings: an overview of the research evidence base. Child Care Health Dev. 2006;32(1):19-31.

55. Boss P, Couden BA. Ambiguous loss from chronic physical illness: clinical interventions with individuals, couples, and families.J Clin Psychol. 2002;58(11):1351-1360.

56. Fominyh EK. Emotional intelligence as a factor of adaptation potential of personality. Soc Sci. 2015;10(6):785-789.

57. Lazarus RS. Psychological Stress and the Coping Process. New York, NY: McGraw-Hill; 1966.

58. Compas BE, Jaser SS, Dunn MJ, Rodriguez EM. Coping with chronic illness in childhood and adolescence. Annu Rev Clin Psychol. 2012;8:455-480.

59. Folkman S, Lazarus RS. An analysis of coping in a middle-aged community sample. J Health Soc Behav. 1980;21(3):219-239.

60. Moore JL, Constantine MG. Development and initial validation of the Collectivistic Coping Styles Measure with African, Asian, and Latin American international students. J Ment Health Counseling. 2005;27(4):329-347.

61. Assari S. Chronic medical conditions and major depressive disorder: differential role of positive coping among African Americans, Carribiean blacks, and non-Hispanic whites. Int J Prev Med. 2014;5(4):405-413.

62. Culver JL, Arena PL, Antoni MH, Carver CS. Coping and distress among women under treatment for early stage breast cancer: comparing African Americans, Hispanics, and non-Hispanic Whites. Psychooncology. 2002;11(6):495-504.

63. Hill SA. Managing Sickle Cell Disease in Low-Income Families. Philadelphia, PA: Temple University Press; 1994.

64. Biegel DE, Sales E, Schulz R. Theoretical perspectives on caregiving. In: Biegel DE, Sales E, Schulz R (eds). Family Caregiving in Chronic Illness. Thousand Oaks, CA: Sage Publications, Inc.; 1990: 29-61.

65. Carter B, McGoldrick M. Overview: the expanded family life cycle: individual, family, and social perspectives. In: Carter B, McGoldrick M, Garcia-Preto N (eds). The Expanded Family Life Cycle: Individual, Family, and Social Perspectives. 4th ed. Needham Heights, MA: Allyn and Bacon; 2010: 1-26.

66. Sulik GA. The balancing act: care work for the self and coping with breast cancer. Gender and Society. 2007;21(6):857-877.

67. Knight BG, Sayegh P. Cultural values and caregiving: the updated sociocultural stress and coping model. J Gerontol B Psychol Sci Soc Sci. 2010;65B(1):5-13.

68. Durant TJ Jr, Christian OG. Caregiving to Aging Parents. Available at https://forumonpublicpolicy.com/archive07/durant.pdf. Last accessed May 17, 2021.

69. Short PF, Stone RI. The competing demands of employment and informal caregiving to disabled elders. Med Care. 1990;28(6): 513-526.

70. Levine C, Hunt GG, Halper D, Hart AY, Lautz J, Gould DA. Young adult caregivers: a first look at an unstudied population.Am J Public Health. 2005;95(11):2071-2075.

71. Katz S, Krulik T. Fathers of children with chronic illness: do they differ from fathers of healthy children? J Fam Nurs. 1999;5(3):292-315.

72. Goble LA. The impact of a child's chronic illness on fathers. Issues Compr Pediatr Nurs. 2004;27(3):153-162.

73. Jordan A, Crabtree A, Eccleston C. "You have to be a jack of all trades:" fathers parenting their adolescent with chronic pain.J Health Psychol. 2015; [Epub ahead of print].

74. McGrath P, Huff N. Including the fathers' perspective in holistic care. Part I: findings on the fathers' experiences with childhood acute lymphoblastic leukemia. Aust J Holistic Nurs. 2003;10(1):4-12.

75. Shaw MC, Halliday PH. The family, crisis and chronic illness: an evolutionary model. J Adv Nurs. 1992;17(5):537-543.

76. Gordon PA, Feldman D, Crose R, Schoen E, Griffing G, Shankar J. The role of religious beliefs in coping with chronic illness. Counseling Values. 2002;46(3):162-174.

77. Greenstreet W. From spirituality to coping strategy: making sense of chronic illness. Br J Nurs. 2006;15(17):938-942.

78. Pargament, KI. God help me: toward a theoretical framework of coping for psychology of religion. In: Lynn ML, Moberg DO, Greer JM (eds). Research in the Social Scientific Study of Religion, Volume 2. Greenwich, CT: JAI Press, Inc.; 1990: 195-224.

79. Pargament KI, Ensing DS, Falgout K, et al. God help me: religious coping efforts as predictors of the outcomes to significant negative life events. Am J Community Psychol. 1990;18(6):793-824.

80. Lee M, Nezu AM, Nezu CM. Positive and negative religious coping, depressive symptoms, and quality of life in people with HIV.J Behav Med. 2014;37(5):921-930.

81. Biegel DE, Sales E, Schulz R. Overview of family caregiving. In: Biegel DE, Sales E, Schulz R (eds). Family Caregiving in Chronic Illness. Thousand Oaks, CA: Sage Publications, Inc.; 1990: 7-28.

82. Pierce L, Lutz BJ. Family caregiving. In: Larsen PD (ed). Lubkin's Chronic Illness: Impact and Interventions. 10th ed. Sudbury, MA: Jones and Bartlett Publishers; 2017: 191-226.

83. Salda DH, Dassori AM, Miller AL. When is caregiving a burden? Listening to Mexican American women. Hispanic J Behav Sci. 1999;21(3):283-301.

84. Ayalong L. Cultural variants of caregiving or the culture of caregiving. J Cult Diversity. 2004;11(4):131-138.

85. Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. JAMA. 2014;311(10):1052-1060.

86. van Exel NJ, Brouwer WB, van den Berg B, Koopmanschap MA, van den Bos GA. What really matters: an inquiry into the relative importance of dimensions of informal caregiver burden. Clin Rehabil. 2004;18(6):683-693.

87. World Health Organization. Reducing Risks, Promoting Healthy Life. Available at https://www.who.int/whr/2002/en. Last accessed May 17, 2021.

88. Transgenerational Design Matters. The Demographics of Aging. Available at http://www.transgenerational.org/aging/demographics.htm. Last accessed May 17, 2021.

89. The Office of Minority Health. Heart Disease and African Americans. Available at https://minorityhealth.hhs.gov/omh/browse.aspx?lvl=4&lvlID=19. Last accessed May 17, 2021.

90. Lee YR, Sung KT. Cultural influences on caregiving burden: cases of Koreans and Americans. Int J Aging Hum Dev. 1998;46(2): 125-141.

91. Casado B, Sacco P. Correlates of caregiver burden among family caregivers of older Korean Americans. J Gerontol B Psychol Sci Soc Sci. 2012;67(3):331-336.

92. Chakrabarti S. Cultural aspects of caregiver burden in psychiatric disorders. World J Psychiatr. 2013;3(4):85-92.

93. Chilman CS. Hispanic families in the United States: research perspectives. In: McAdoo HP (ed). Family Ethnicity: Strength in Diversity. 2nd ed. Thousand Oaks, CA: Sage Publications, Inc.; 1999: 141-163.

94. Cox C, Monk A. Hispanic culture and family care of Alzheimer's patients. Health Soc Work. 1993;18(2):92-100.

95. Mausbach BT, Coon DW, Depp C, et al. Ethnicity and time to institutionalization of dementia patients: a comparison of Latina and Caucasian female family caregivers. J Am Geriatr Soc. 2004;52(7):1077-1084.

96. Calderon V, Tennstedt SL. Ethnic differences in the expression of caregiver burden: results of a qualitative study. J Gerontol Soc Work. 1998;30(1/2):159-178.

97. Chadiha LA, Adams P, Biegel DE, Auslander W, Gutierrez L. Empowering African American women informal caregivers: a literature synthesis and practice strategies. Soc Work. 2004;49(1):97-108.

98. Groger L, Mayberry PS. Caring too much? Cultural lag in African Americans' perceptions of filial responsibilities. J Cross Cult Gerontol. 2001;16(1):21-39.

99. Kaufman AV, Kosberg JI, Leeper JD, Tang M. Social support, caregiver burden, and life satisfaction in a sample of rural African American and White caregivers of older persons with dementia. J Gerontol Soc Work. 2010;53(3):251-269.

100. Dilworth-Anderson P, Williams SW, Cooper T. Family caregiving to elderly African Americans: caregiver types and structures.J Gerontol. 1999;54(4):S237-S241.

101. Chung DK. Asian cultural commonalities: a comparison with mainstream American culture. In: Furuto S, Biswas R, Chung DK, Murase K, Ross-Sheriff F (eds). Social Work Practice with Asian Americans. Thousand Oaks, CA: Sage Publications, Inc.; 1992: 27-44.

102. Braun KL, Browne CV. Perceptions of dementia, caregiving, and help-seeking among Asian and Pacific Islander Americans. Health Soc Work. 1998;23(4):262-274.

103. Chee YK, Levkoff SE. Culture and dementia: accounts by family caregivers and health professionals for dementia-affected elders in South Korea. J Cross Cult Gerontol. 2001;16(2):111-125.

104. Chao SY, Roth P. The experiences of Taiwanese women caring for parents-in-law. J Adv Nurs. 2000;31(3):631-638.

105. Yamaguchi S, Cohen SR, Uza M. Family caregiving in Japan: the influence of cultural constructs in the care of adults with cancer.J Fam Nurs. 2016;22(3):392-418.

106. Lohne V, Miaskowski C, Rustøen T. The relationship between hope and caregiver strain in family caregivers of patients with advanced cancer. Cancer Nurs. 2012;35(2):99-105.

107. Qualey TL. Assessing the patient's caregiver. Nurs Manage. 1997;28(6):43-44.

108. Hepworth DH, Rooney RH, Larsen JA. Enhancing family functioning and relationships. In: Hepworth DH, Rooney RH, Rooney GD, Strom-Gottfried K (eds). Direct Social Work Practice: Theory and Skills. 10th ed. Pacific Grove, CA: Brooks/Cole Publishing Co.; 2016: 471-506.

109. McGoldrick M, Gerson R, Petry S, Tracking family patterns through time and space. In: McGoldrick M, Gerson R, Petry S (eds). Genograms: Assessment and Intervention. 3rd ed. New York, NY: W.W. Norton and Company; 2008: 81-113.

110. Tracy EM, Whittaker JK. The social network map: assessing social support in clinical practice. Fam Soc. 1990;71(8):461-470.

111. Fowler FJ, Mangione TW. What is a standardized survey interview? In: Fowler FJ, Mangione TW (eds). Standardized Survey Interviewing: Minimizing Interviewer-Related Error. Thousand Oaks, CA: Sage Publications, Inc.; 1990: 11-23.

112. Eccleston C, Palermo TM, Fisher E, Law E. Psychological interventions for parents of children and adolescents with chronic illness. Cochrane Database Syst Rev. 2012;8:CD009660.

113. Berry JO, Hardman ML. Families and the adult years. In: Berry JO, Hardman ML (eds). Lifespan Perspectives on the Family and Disability. 2nd ed. Dallas, TX: Pro-Ed, Inc.; 2008.

114. Biegel DE, Sales E, Schulz R. The outcomes of interventions for caregivers. In: Biegel DE, Sales E, Schulz R (eds). Family Caregiving in Chronic Illness. Thousand Oaks, CA: Sage Publications, Inc.; 1990: 214-296.

115. Al-Janabi H, Frew E, Brouwer W, Rappange D, Van Exel J. The inclusion of positive aspects of caring in the Caregiver Strain Index: tests of feasibility and validity. Int J Nurs Stud. 2010;47(8):984-993.

116. Zarit SH, Reever KE, Bach-Peterson J. Relatives of impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20(6):649-655.

117. Berg-Wege Maria, Rubio DM, Tebb SS. The Caregiver Well-Being Scale revisited. Health Soc Work. 2000;25(4):255-263.

118. Given CW, Given B, Stommel M, Collins C, King S, Franklin S. The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Res Nurs Health. 1992;15(4):271-283.

119. Radloff LS. The CES-D Scale: a self-report depression scale for research in the general population. Appl Psychological Meas. 1997;1(3):385-401.

120. Zung WK. A rating instrument for anxiety disorders. Psychosomatics. 1971;12(6):371-379.

121. Corcoran K, Fischer J. Measures for Clinical Practice: A Source Book, Volume 2: Adults. 5th ed. New York, NY: The Free Press; 2013.

122. Akhtar A, Rahman A, Husain M, Chaudhry IB, Duddu V, Husain N. Multidimensional scale of perceived social support: psychometric properties in a South Asian population. J Obstet Gynaecol Res. 2010;36(4):845-851.

123. Norbeck JS. Psychometric Properties of the Norbeck Social Support Questionnaire. Available at https://ufdc.ufl.edu/UFE0022029/00001. Last accessed May 17, 2021.

124. Vaux A, Riedel S, Stewart D. Modes of social support: the Social Support Behaviors (SSB) Scale. Am J Community Psychiatry. 1987;15(2):209-232.

125. Rolland JS. The family, chronic illness, and disability: an integrated practice model. In: Fiese BH, Celano M, Deater-Deckard K, Jouriles EN, Whisman MA (eds). APA Handbook of Contemporary Family Psychology: Applications and Broad Impact of Family Psychology. Washington, DC: American Psychological Association; 2019: 85-102.

126. Benjamin EJ, Virani SS, Callaway CW, et al. Heart disease and stroke statistics—2018 update: a report from the American Heart Association. Circulation. 2018;137(12):e67-e492.

127. Ginnis K, White E, Ross A, Wharff E. Family-based crisis intervention in the emergency department: a new model of care. J Child Fam Stud. 2015;24(1):172-179.

128. Earnshaw V, Quinn D, Kalichman S, Park C. Development and psychometric evaluation of the Chronic Illness Anticipated Stigma Scale. J Behav Med. 2013;36(3):270-282.

129. Pinquart M. Self-esteem of children and adolescents with chronic illness: a meta-analysis. Child Care Health Dev. 2013;39(2):153-161.

130. Reed-Knight B, Blount RL, Gilleland J. The transition of health care responsibility from parents to youths diagnosed with chronic illness: a developmental systems perspective. Fam Syst Health. 2014;32(2):219-234.

131. Röing M, Sanner M. A meta-ethnographic synthesis on phenomenographic studies of patients' experiences of chronic illness.Int J Qual Stud Health Well-being. 2015;10:1-16.

132. Järemo P, Arman M, Gerdle B, Larsson B, Gottberg K. Illness beliefs among patients with chronic widespread pain: associations with self-reported health status, anxiety and depressive symptoms and impact of pain. BMC Psychol. 2017;5(1):24.

133. Årestedt L, Persson C, Benzein E. Living as a family in the midst of chronic illness. Scand J Caring Sci. 2014;28(1):29-37.

134. Kita M, Ito K. The caregiving process of the family unit caring for a frail older family member at home: a grounded theory study.Int J Older People Nurs. 2013;8(2):149-158.

135. Limbers CA, Skipper S. Health-related quality of life measurement in siblings of children with physical chronic illness: a systematic review. Fam Syst Health. 2014;32(4):408-415.

136. Knecht C, Hellmers C, Metzing S. The perspective of siblings of children with chronic illness. J Pediatr Nurs. 2015;30(1):102-116.

137. Golub SA, Gamarel KE, Rendina HJ. Loss and growth: identity processes with distinct and complementary impacts on well-being among those living with chronic illness. Psychol Health Med. 2014;19(5):572-579.

138. Ness DL. Supporting family caregivers, who are indispensable to families, communities and our country. Women's Health Activist. 2013;38(1):4-5.

139. Pope ND, Kolomer S, Glass AP. How women in late midlife become caregivers for their aging parents. J Women Aging. 2012;24: 242-261.

140. Drutchas A, Anandarajah G. Spirituality and coping with chronic disease in pediatrics. R I Med J. 2014;97(3):26-30.

141. National Council on Aging. Acute vs. Chronic Conditions: What's the Difference? Available at https://www.ncoa.org/article/chronic-versus-acute-disease. Last accessed May 17, 2021.

142. Bernell S, Howard SW. Use your words carefully: what is a chronic disease? Front Public Health. 2016;4:159.

143. Erdtmann F. Living well with chronic illness: a call for public health action. Mil Med. 2015;180(5):485-487.

144. U.S. Census Bureau. Projections of the Size and Composition of the U.S. Population: 2014 to 2060. Available at https://www.census.gov/content/dam/Census/library/publications/2015/demo/p25-1143.pdf. Last accessed May 17, 2021.

145. Findley PA. Social work practice in the chronic care model: chronic illness and disability care. J Soc Work. 2014;14(1):83-95.

146. Pharr JR, Francis CD, Terry C, Clark MC. Culture, caregiving and health: exploring the influence of culture on family caregiver experiences. ISRN Otolaryngol. 2014;1-8.

147. Willis R. Individualism, collectivism, and ethnic identity: cultural assumptions in accounting for caregiving behavior in Britain.J Cross Cult Gerontol. 2012;27(3):201-216.

148. Ruiz ME, Ransford HE. Latino elders reframing familismo: implications for health and caregiving support. J Cult Divers. 2012;19(2):50-57.

149. Kelly SM, Pacita W, Kiara Durham J. African American communities and family systems: relevance and challenges. Couple Family Psychol. 2013;2(4):264-277.

150. Dong X, Zhang M, Simon MA. The expectation and perceived receipt of filial piety among Chinese older adults in the greater Chicago area. J Aging Health. 2014;26(7):1225-1247.

151. American Psychological Association. Assessment Tools. Available at https://www.apa.org/pi/about/publications/caregivers/practice-settings/assessment/tools/index. Last accessed May 17, 2021.

152. Steffen AM, McKibbin C, Zeiss AM, Gallagher-Thompson D, Bandura A. The revised scale for caregiving self-efficacy: reliability and validity studies. J Gerontol B Psychol Sci Soc Sci. 2002;57:74-86.

153. Panicker L. Nurses' perceptions of parent empowerment in chronic illness. Contemporary Nurse: A Journal for the Australian Nursing Profession. 2013;45(2):210-219.

154. McDaniel SH, Doherty WJ, Hepworth J. Couples and illness. In: McDaniel SH, Doherty WJ, Hepworth J (eds). Medical Family Therapy and Integrated Care. 2nd ed. Washington, DC: American Psychological Association; 2014: 151-168.

155. López-Larrosa S. Quality of life, treatment adherence, and locus of control: multiple family groups for chronic medical illnesses.Fam Process. 2013;52(4):685-696.

156. Rand. Chronic Conditions in America: Price and Prevalence. Available at https://www.rand.org/blog/rand-review/2017/07/chronic-conditions-in-america-price-and-prevalence.html. Last accessed May 17, 2021.

157. Basu J, Avila R, Ricciardi R. Hospital readmission rates in U.S. States: are readmissions higher where more patients with multiple chronic conditions cluster? Health Services Research. 2016;51:1135-1151.

158. Denny B, Kienhuis M, Gavidia-Payne S. Explaining the quality of life of organ transplant patients by using crisis theory. Prog Transplant. 2015;25(4):324-331.

159. Mirabito DM. Social work theory and practice for crisis, disaster, and trauma. In: Turner FJ (ed). Social Work Treatment: Interlocking Theoretical Approaches. 6th ed. New York, NY: Oxford University Press; 2017: 117-130.

160. Anderson EW, White KM. "This is what family does:" the family experience of caring for serious illness. Am J Hosp Palliat Care. 2018;35(2):348-354.

161. Parmanand SP, Benoit E. Structural theory: approaches and applications. In: Capuzzi D, Stauffer MD (eds). Foundations of Couples, Marriage, and Family Counseling. New York, NY: John Wiley & Sons Inc.; 2015: 215-237.

162. Aesha J, Roblyer MZ. Mothers parenting a child with intellectual disability in urban India: an application of the stress and resilience framework. Intellect Dev Disabil. 2017;55(5):325-337.

163. Sullivan K. An application of family stress theory to clinical work with military families and other vulnerable populations. Clin Soc Work J. 2015;43(1):89-97.

164. Warner CB, Roberts AR, Jeanblanc AB, Adams KB. Coping resources, loneliness, and depressive symptoms of older women with chronic illness. J Appl Gerontol. 2019;38(3):295-322.

165. Choquette A, Rennick JE, Lee V. Back to school after cancer treatment: making sense of the adolescent experience. Cancer Nurs. 2016;39(5):393-401.

166. Altschuler J. Whose illness is it anyway? On facing illness as a couple. J Fam Ther. 2015;37(1):119-133.

167. Hassani P, Izadi-Avanji FS, Rakhshan M, Majd HA. A phenomenological study on resilience of the elderly suffering from chronic disease: a qualitative study. Psychol Res Behav Manag. 2017;10:59-67.

168. Robinson CA. Families living well with chronic illness: the healing process of moving on. Qual Health Res. 2017;27(4):447-461.

169. Keisler-Starkey, K, Bunch LN. Health Insurance Coverage in the United States: 2019. Available at https://www.census.gov/library/publications/2020/demo/p60-271.html. Last accessed May 17, 2021.

170. U.S. Census. Health Insurance Coverage: 2017. Available at https://www.census.gov/library/publications/2018/demo/p60-264.html. Last accessed May 17, 2021.

171. Lee AA, Piette JD, Heisler M, Langa KM, Rosland AM, Janevic MR. Family members' experiences supporting adults with chronic illness: a national survey. Fam Syst Health. 2017;35(4):463-473.

172. Coughlin MB, Sethares KA. Chronic sorrow in parents of children with a chronic illness or disability: an integrative literature review. J Pediatr Nurs. 2017;37:108-111.

173. Sirois FM, Molnar DS, Hirsch JK. Self-compassion, stress, and coping in the context of chronic illness. Self Identity. 2015;14(3): 334-347.

174. Desai PP, Rivera AT, Backes EM. Latino caregiver coping with children's chronic health conditions: an integrative literature review. J Pediatr Health Care. 2016;30(2):108-120.

175. Røthing M, Malterud K, Frich JC. Caregiver roles in families affected by Huntington's disease: a qualitative interview study.Scand J Caring Sci. 2014;28(4):700-705.

176. Milligan C, Morbey H. Care, coping and identity: older men's experiences of spousal care-giving. J Aging Stud. 2016;38:105-114.

177. Roger KS, Hatala A. Religion, spirituality and chronic illness: a scoping review and implications for health care practitioners.J Relig Spiritual Soc Work. 2018;37(1):24-44.

178. Evans BC, Coon DW, Belyea MJ, Ume E. Collective care: multiple caregivers and multiple care recipients in Mexican American families. J Transcult Nurs. 2017;28(4):398-407.

179. Miyawaki CE. Caregiving practice patterns of Asian, Hispanic, and Non-Hispanic White American family caregivers of older adults across generations. J Cross Cult Gerontol. 2016;31(1):35-55.

180. Skolarus LE, Feng C, Burke JF, Freedman VA. African American stroke survivors more caregiving time, but less caregiving burden. Circ Cardiovasc Qual Outcomes. 2017;10(2).

181. Lun MWA. Culturally competent social work practice with Chinese and Korean family caregivers of older adults: perspectives from the field. Educ Gerontol. 2016;42(6):401-410.

182. Kanti MK, Falconier MK. Asian Americans caring for elderly parents in the U.S. J Cult Divers. 2017;24(3):73-83.

183. Miyawaki CE. Association of filial responsibility, ethnicity, and acculturation among Japanese American family caregivers of older adults. J Appl Gerontol. 2017;36(3):296-319.

184. Francoeur RB, Burke N, Wilson AM. The role of social workers in spiritual care to facilitate coping with chronic illness and self-determination in advance care planning. Soc Work Public Health. 2016;31(5):453-466.

185. Pirskanen H, Jokinen K, Kallinen K, Harju-Veijola M, Rautakorpi S. Researching children's multiple family relations: social network maps and life-lines as methods. Qualitative Sociology Review. 2015;11(1):50-69.

186. Novak M, Guest C. Application of a multidimensional caregiver burden inventory. Gerontologist. 1989;29(6):798-803.

187. Tkatch R, Bazarko D, Musich S, et al. A pilot online mindfulness intervention to decrease caregiver burden and improve psychological well-being. J Evid Based Complementary Altern Med. 2017;22(4):736-743.

188. Meyer OL, Nguyen KH, Dao TN, Vu P, Arean P, Hinton L. The sociocultural context of caregiving experiences for Vietnamese dementia family caregivers. Asian Am J Psychol. 2015;6(3):263-272.

189. Liljeroos M, Ågren S, Jaarsma T, Årestedt K, Strömberg A. Long-term effects of a dyadic psycho-educational intervention on caregiver burden and morbidity in partners of patients with heart failure: a randomized controlled trial. Qual Life Res. 2017;26(2):367-379.

190. Limiñana-Gras RM, Colodro-Conde L, Cuéllar-Flores I, Sánchez-López MP. Clinical efficacy of psychoeducational interventions with family caregivers. Educ Gerontol. 2016;42(1):37-48.

191. Wennberg A, Dye C, Streetman-Loy B, Hiep P. Alzheimer's patient familial caregivers: a review of burden and interventions.Health Soc Work. 2015;40(4):e162-e169.

192. Zegwaard MI, Aartsen MJ, Grypdonck MHF, Cuijpers P. Trust: an essential condition in the application of a caregiver support intervention in nursing practice. BMC Psychiatry. 2017;17:47.

193. Winter MA, Al Ghriwati N, Devine KA. Pediatric chronic health conditions: adaptation within the family context. In: Fiese BH, Celano M, Deater-Deckard K, Jouriles EN, Whisman MA (eds). APA Handbook of Contemporary Family Psychology: Applications and Broad Impact of Family Psychology. Washington, DC: American Psychological Association; 2019: 69-84.

194. Centers for Disease Control and Prevention. Chronic Diseases in America. Available at https://www.cdc.gov/chronicdisease/resources/infographic/chronic-diseases.htm. Last accessed May 17, 2021.

195. National Council on Aging. Get the Facts on Chronic Disease Self-Management. https://www.ncoa.org/news/resources-for-reporters/get-the-facts/chronic-disease-facts. Last accessed May 17, 2021.

196. Raghupathi W, Raghupathi V. An empirical study of chronic diseases in the United States: a visual analytics approach. Int J Environ Res Pub Health. 2018;15(3):431.

197. Partnership Fight Chronic Disease. National Fact Sheet on the Impact of Chronic Disease in the United States. Available at https://www.fightchronicdisease.org/sites/default/files/pfcd_blocks/PFCD. Last accessed May 17, 2021.

198. Distelberg BJ, Emerson ND, Gavaza P, et al. A cost–benefit analysis of a family systems intervention for managing pediatric chronic illness. Journal of Marital and Family Therapy. 2016;42(3):371-382.

199. Stewart L, Stutz H, Lile W. The continuum of dependent family care: a theoretical explanation and model. Community, Work & Family. 2018;21(5):599-619.

200. Ambrosio L, Navarta-Sánchez MV, Carvajal A, Garcia-Vivar C. Living with chronic illness from the family perspective: an integrative review. Clinical Nursing Research. 2020; [Epub ahead of print].

201. Lee J, Cagle JG. Measures of financial burden for families dealing with serious illness: a systematic review and analysis. Palliative Medicine. 2021;35(2):280-294.

202. Janin MMH, Ellis SJ, Lum A, Wakefield CE, Fardell JE. Parents' perspectives on their child's social experience in the context of childhood chronic illness: a qualitative study. Journal of Pediatric Nursing. 2018;42:e10-e18.

203. Kirk S, Hinton D. "I'm not what I used to be:" a qualitative study exploring how young people experience being diagnosed with a chronic illness. Child: Care, Health & Development. 2019;45(2):216-226.

204. Sallay V, Martos T, Chatfield SL, Dúll A. Strategies of dyadic coping and self-regulation in the family homes of chronically ill persons: a qualitative research study using the emotional map of the home interview method. Frontiers in Psychology. 2019;10:403.

205. Zelman JJ, Ferro MA. The Parental Stress Scale: psychometric properties in families of children with chronic health conditions. Family Relations. 2018;67(2):240-252.

206. Dutta O, Tan-Ho G, Choo PY, Ho A. Lived experience of a child's chronic illness and death: a qualitative systematic review of the parental bereavement trajectory. Death Studies. 2019;43(9):547-561.

207. Van der Werf HM, Paans W, Emmens G, Francke AL, Roodbol PF, Luttik MLA. Experiences of Dutch students growing up with a family member with a chronic illness: a qualitative study. Health & Social Care in the Community. 2020;28(2):624-632.

208. Lummer-Aikey S, Goldstein S. Sibling adjustment to childhood chronic illness: an integrative review. Journal of Family Nursing. 2020; [Epub ahead of print].

209. Olwit C, Mugaba M, Osingada CP, Nabirye RC. Existence, triggers, and coping with chronic sorrow: a qualitative study of caretakers of children with sickle cell disease in a National Referral Hospital in Kampala, Uganda. BMC Psychology. 2018;6(1):50.

210. Zeligman M, Varney M, Grad RI, Huffstead M. Posttraumatic growth in individuals with chronic illness: the role of social support and meaning making. Journal of Counseling & Development. 2018;96(1):53-63.

211. Nabors L, Liddle M, Graves ML, Kamphaus A, Elkins J. A family affair: supporting children with chronic illnesses. Child: Care, Health and Development. 2019;45(2):227-233.

212. Qiu X, Sit JWH, Koo FK. The influence of Chinese culture on family caregivers of stroke survivors: a qualitative study. Journal of Clinical Nursing. 2018;27(1-2):e309-e319.

213. Kristjansdottir OB, Stenberg U, Mirkovic J, et al. Personal strengths reported by people with chronic illness: a qualitative study. Health Expectations. 2018;21(4):787-795.

214. Toledano-Toledano F, Domínguez-Guedea MT. Psychosocial factors related with caregiver burden among families of children with chronic conditions. BioPsychoSocial Medicine. 2019;13:6.

215. Riffin C, Van Ness PH, Wolff JL, Fried T. Multifactorial examination of caregiver burden in a national sample of family and unpaid caregivers. Journal of the American Geriatrics Society. 2019;67(2):277-283.

216. Diallo A, Cuevas S, Vang C, Vemu SM. Caregiving and stress: family-systems resources and external resources. Journal of Rehabilitation. 2019;85(4):4-13.

217. Rote S, Angel J, Hinton L. Characteristics and consequences of family support in Latino dementia care. Journal of Cross-Cultural Gerontology. 2019;34(4):337-354.

218. Brewster GS, Bonds K, McLennon S, Moss KO, Epps F, Lopez RP. Missing the mark: the complexity of African American dementia family caregiving. Journal of Family Nursing. 2020;26(4):294-301.

219. Cheung S-L, Barf H, Cummings S, Hobbelen H, Chui EW-T. Changing shapes of care: expressions of filial piety among second-generation Chinese in the Netherlands. Journal of Family Issues. 2020;41(12):2400-2422.

220. Lempers J, Clark-Lempers D, Simons R. Economic hardship, parenting, and distress in adolescence. Child Development. 1989;60(1):25-39.

221. Pai S, Kapur R. The burden on the family of a psychiatric patient: development of an interview schedule. British Journal of Psychiatry. 1981;138(4):332-335.

222. Gunter MD. Reducing uncertainty in families dealing with childhood cancers: an integrative literature review. Pediatric Nursing. 2018;44(1):21-37.

223. Distelberg B, Tapanes D, Emerson ND, et al. Prospective pilot study of the mastering each new direction psychosocial family systems program for pediatric chronic illness. Family Process. 2018;57(1):83-99.

224. Pandey MK. Does social support group membership help in coping with chronic diseases? Indian Journal of Health & Wellbeing. 2018;9(3):428-435.

225. van Dongen JJJ, van Bokhoven MA, Daniëls R, van der Weijden T, Petronella Emonts WWG, Beurskens A. Developing interprofessional care plans in chronic care: a scoping review. BMC Family Practice. 2016;17:1-9.

226. World Health Organization. Framework for Action on Interprofessional Education and Collaborative Practice. Available at https://apps.who.int/iris/bitstream/handle/10665/70185/WHO_HRH_HPN_10.3_eng.pdf. Last accessed May 17, 2021.

227. D'Amour D, Oandasan I. Interprofessionality as the field of interprofessional practice and interprofessional education: an emerging concept. Journal of Interprofessional Care. 2005;5(Suppl 1):8-20.

228. Pascucci D, Sassano M, Nurches MC, et al. Impact of interprofessional collaboration on chronic disease management: findings from a systematic review of clinical trial and meta-analysis. Health Policy. 2021;125(2):191-202.



Privacy Policy
Copyright © 2021 CE Resource, P.O. Box 997571, Sacramento, CA 95899-7571
Mention of commercial products does not indicate endorsement.