Family as a Bridge to Improve Meaning in Latinx Individuals Coping with Cancer

Background: Family and meaning-making resources are culturally congruent and help support Latinx coping with cancer. Objectives: To explore Latinx advanced cancer patients' perspectives on the role of family and meaning/purpose in adjustment to advanced cancer. Methods: A qualitative study was conducted. In-depth interviews were performed and transcripts were analyzed using the method from applied thematic analysis. Setting/Subject: Participants were patients with any advanced cancer diagnosis, recruited from Memorial Sloan Kettering Cancer Center (MSKCC), New York; Lincoln Medical Center (LMC), New York; and Ponce Health Science University (PHSU), Puerto Rico. Measurements: Sociodemographic and semistructured interview. Results: N = 24 in-depth interviews were completed by Latinx advanced cancer patients (Stage III and IV). When evaluating patients' perspectives on the role of family and meaning/purpose in adjustment to advanced cancer, the team generated three categories: (1) family support, (2) family communication, and (3) include support for the family. Many patients reported the importance of family as a source of meaning and social support in the process of cancer diagnosis and treatment. They also reported communication as central to process information and planning. Also, participants describe their desire to incorporate family members into therapy and for encouraging them to seek counseling. Conclusions: Results highlight the need to include syntonic cultural values such as family and meaning for Latinx individuals coping with advanced cancer in psychological interventions.


Introduction
Approximately 38% of Latinx individuals will develop cancer in their lifetime, 1 and compared with non-Hispanic Whites, Latinx individuals are more likely to be diagnosed at an advanced stage. 2 Compounding this problem, Latinx individuals are less likely to have adequate access to culturally congruent psychosocial interventions. [3][4][5][6][7][8][9][10][11][12][13][14] The lack of interventions designed to be culturally congruent and relevant for Latinx communities contributes to less access to care for under-represented or vulnerable populations in need of culturally appropriate interventions.
Some end-of-life studies conducted with advanced cancer Latinx patients have noted the importance of including caregivers in the patient's treatment decision and the importance of including the caregivers in this process of care. 15 Additional studies with Latinx cancer patients underscore how family support is essential while coping with cancer 16 and the importance of family involvement in care. [16][17][18] Family support helps meet patients' practical, physical, and emotional needs, 16 and assists in treatment decision making, advanced care planning, and end-of-life decisions. [19][20][21] Moreover, family and meaning-making are resources that may help support Latinx individuals coping with cancer, 16,22 especially when Latinx patients perceive meaning-making as a coping mechanism, 16 even when they migrate to other countries. [23][24][25][26][27][28][29] Many factors lead to cancer patients' meaning making, yet the implication of Latinx family-related content is absent in the literature and is also a gap in the development of culturally appropriate interventions. Specifically, when family relationships are a cultural value that may influence the Latinx meaning-making process in advanced cancer and can aid in the development of future interventions. The aim of this study was to explore Latinx advanced cancer patients' perspectives on the role of family and meaning/purpose in adjustment to advanced cancer.

Participants and procedures
Research staff identified and approached participants (n = 127) between August 2015 and October 2018 to adapt a psychotherapy intervention with advanced cancer patients at two cancer clinics in New York and one in Ponce, Puerto Rico. Eligible participants were adult cancer patients (ages 18 years or older) diagnosed with stage III or IV solid tumor can-cer, self-identified Latinx/Hispanic ethnicity, fluent in Spanish, and selected by convenience. Of the 127 patients approached, 49% refused to participate, and 9% became ineligible after providing consent (i.e., became too ill to participate), yielding a sample of 54 patients.
A nested sample of the first consecutive 24 patients was invited to complete in-depth and semistructured interviews until saturation was reached. This secondary data analysis aimed to explore Latinx advanced cancer patients' perspectives on the role of family and meaning/purpose in adjustment to advanced cancer. This research was reviewed and approved by the three institutions' review boards/privacy boards.

Measures
Semistructured interviews. Interviews ran *90-120 minutes and were conducted in Spanish. The indepth interview consisted of open-ended questions about the patients' meaning-making processes and coping upon diagnosis, sources of meaning in their lives, spirituality, and meaning making after their cancer diagnosis.

Analysis
The analyses, integration, and interpretation of the semistructured interview were all completed in Spanish. Initially, 25% of the interviews were coded using an open coding approach; transcribed interviews were coded by marking passages of text with phrases indicating the content of the discussions. [30][31][32] Using ATLAS, it's report and query functions, the qualitative analysts (N.T.-B., M.C., C.Z., and R.C.-M.) independently coded the transcripts and discussed divergence and convergence points. [30][31][32] These discussions continued until the group reached a consensus on the code's application. [30][31][32] A coding dictionary was developed based on the consensus meeting discussions. [30][31][32] The qualitative coders then coded the remaining transcriptions using the coding dictionary. Through consensus meetings, divergence and convergence points were discussed among the group until consensus was met. Intercoder reliability was conducted through team-based consensus. Table 1 summarizes the general characteristics of the patients in this study.

Participants
Perspective of the family of the Latinx cancer patient Participant narratives were grouped into three broad categories: family support, family communication, and inclusion of family into psychotherapy, see Table 2.
Theme 1: Family support. After their cancer diagnosis, participants commented about family as a source of meaning. Many participants discussed the importance of their family as a primary social network and instrumental in coping with a cancer diagnosis. The first and most frequent theme that emerged from the data was the support received by the family members and their importance in the cancer diagnosis process. Patients reported that family gives them meaning, which helps them ''continue fighting.'' They described how they perceived the support through gestures, conversations, letters, and kindness. The actions and attention of the family to the cancer diagnosis provided the participants meaning and support.
I believe that the only thing that has given my life meaning like this is God and my children, to continue fighting. P10 [after the diagnosis] The relatives who knew immediately looked for their closest people, and then I began to receive messages of love, letters, people who, yes. I felt pleased. And that I could talk in a certain way, without feeling. like questioned. I don't know, like. like they could be supportive. P02 Theme 2: Family communication. Family communication is central to ''processing'' the information, planning, and decision making. However, some participants noted challenges in communicating with family members due to other family responsibilities, fear of making family members suffer, and lack understanding the diagnosis. For example, a female patient reported that sometimes her sisters' and parents' responsibilities did not allow her to communicate how she felt about cancer and that she would like to discuss it. Also, a male participant reported that he prefers to ''not say anything anymore'' and refers to it as a cultural norm that states that men ''do not say anything.'' I am living with my parents and two sisters; one is studying and the other one is working, so there is not much communication. However, I feel like I need to communicate how I felt about my diagnosis and process thing with them. P15 Sometimes it is also a lack of communication. Yes, just yesterday I told my wife that I'm going to therapy, and she did not know. And that has also changed a lot, lack of communication. [after a cancer diagnosis] . We as men don't say anything. Now in that sense, I have changed a lot, and I do not say anything anymore. Sometimes talking, sometimes we argue. P17 Theme 3: Include support for the family. Participants described their desire to help family members receive support and commented on their interest in encouraging family members to seek counseling. Specifically, participants would like for the family to receive services to cope with grief, find meaning, unfinished business, communicate about dying, and the emotional process.
The only thing that worries me is the girls. to make sure. that they don't go through mourning. P02 Support for the family. More than anything. people who have cancer have fewer. have fewer mental problems than those next to them. P20 Support for family members after a cancer diagnosis may help patients cope with the advanced cancer   [referiendose a esposo durante trataiento] ''Ahí ha estado conmigo, gracias a Dios, y como le digo en mi caso fue para bien en muchas cosas porque se demuestra en estas situaciones que tan fuerte es el amor en una pareja, el compromiso y la ayuda. Y en este caso é l ha estado conmigo, ahí está presente a lo que puede, me ayuda, me apoya.'' P30 29. [referring to husband during treatment] ''He has been there with me, thank God. And as I told you, in my case it was for the best in many things because in these situations it demonstrates how strong love is in a couple, the commitment and the help. And in this case, he has been with me, he is there when he can, he helps me, he supports me.'' P30 Family conflict 30. ''Antes había mejor comunicació n. ahora no digo nada, sufro yo solo.'' P17 30. ''There was better communication before. now I don't say anything, I suffer alone.'' P17 31. ''Él nunca ha venido al doctor conmigo, nunca, me fue infiel, y desde allí tuvimos conflicto. Me decía loca y discutíamos, no me apoyo.'' P21 31. ''He has never been to the doctor with me, never, he was unfaithful to me, and from then on, we had conflict.
He called me crazy, and we argued, he didn't support me.'' P21 2. Family communication Planning 32. ''Entonces conversé con ella, con mi hermana, no con las niñ as, (risa profunda) con mi hermana y toda esta cuadrada con ella.'' P02 32. ''So, I talked with her, with my sister, not with the girls, (deep laughter) with my sister and everything is square with her.'' P02 33. ''Entonces hable con mis hermanas, acordamos el tratamiento que va a tener con é l, conversamos con é l, o sea todos los temas difíciles, entre comillas, porque sería la suposició n de yo no estoy.'' P02 33. ''So I talked with my sisters, we agreed on the treatment that they're going to have with him, we talked with him, I mean, all the difficult issues (air quotes), because the assumption would be that I am not.'' P02 Lack of communication 34. ''Estoy con mis padres y con dos hermanas, una estudia, otra trabaja, y entonces la comunicació n no es mucha.'' P15 34. ''I am with my parents and two sisters, one is studying, the other one is working, so there is not much communication.'' P15 35. ''A veces tambié n es falta de comunicació n. Si, justo ayer le comuniqué a mi esposa que voy a terapia y ella no lo sabía. Y no eso tambié n ha cambiado bastante, falta de comunicació n. [referring after cancer diagnosis] . Los hombres no decimos nada. Ahora en ese sentido he cambiado mucho y ya no digo nada. A veces hablando. A veces discutamos.'' P17 35. ''Sometimes it is also a lack of communication. Yes, just yesterday I told my wife that I'm going to therapy, and she didn't know. And that has also changed a lot, lack of communication. [referring after cancer diagnosis] .
We as men don't say anything. Now in that sense I've changed a lot and I don't say anything anymore. Sometimes talking, sometimes we argue.'' P17 36. ''No creen que uno esté enfermo, que no creen en la magnitud que uno esté enfermo, porque é l me decía a mí ''tú no tienes eso, que vas a tener eso, esa enfermedad no es para ti''.'' P21 36. ''They don't believe that one is sick, they don't believe in the magnitude that one [could be] is sick, because he told me 'You do not have that, you are not going to have that, that disease is not for you'.'' P21 (continued) diagnosis. The inclusion of family members into therapy in the end-of-life process may help patients and caregivers with fear and emotional needs.

Discussion and Conclusions
Emerging themes from the study include family support as a coping mechanism, family communication among Latinx individuals coping with advanced cancer, and inclusion of family support. Family as a source of meaning is a known coping skill among Latinx individuals dealing with end of life. 16,22 In addition, it is a coping skill that often enables psychological well-being in the dyad 33 and Latinx coping with cancer. 16 Our findings highlight that family is a source of meaning and social support to cope with, and it produces a cancer-derived sense of purpose from their family relationships, which helped them cope with their diagnosis.
Findings also indicate the importance of improving social networks and promoting family support among patients and family members. Specifically, Latinx individuals' strong emotional bonds promote family support. 34,35 Prior research suggests that it is essential to encourage family support by including the family in cancer care and psychosocial cancer care. 35 Literature suggests benefiting the patients and their families by managing family-related needs and psychosocial symptoms. 36 Participants reported their likelihood of including support for family members. In addition, patients described the importance of counseling and included the need to incorporate family into therapy after an advanced cancer diagnosis. These findings are similar to those presented by Kershaw et al 37 and Fri+riksdóttir et al, 38 suggesting the interdependence of symptoms and the importance of simultaneous care. Specifically, these studies stated that patients' and caregivers' mental and physical health significantly influenced each other, 39 and that family members of cancer patients who experienced symptoms of anxiety and depression reported worse quality of life than those who reported no such symptoms. 36 In conclusion, these findings support the need to include family members and address family support when caring for Latinx patients coping with advanced cancer. Specifically, providers and interventions should include the cultural value of family relationships and family as a source of meaning in the provision of end-of-life services. Presenting Latinx cultural values in practice is essential to provide sensitive interventions among Latinx patients coping with cancer. Future research studies should address developing, adapting, and tailoring interventions for Latinx patients and families dealing with advanced cancer. Limitations This qualitative study was limited, as the data are not generalizable. Also, the larger study's main goal was not the exploration of family in the context of cancer or the meaning process, and this response was derived and not further explored in the current research.

Data Statement
The datasets generated and/or analyzed during this study are not publicly available due to Ponce Health Science University and MSK's Data Sharing Policy but are available from the corresponding author on reasonable request.

Funding Information
The team would like to acknowledge the contribution (2U54CA163071 and 2U54CA163068) and the National Institute of Minority