Abstract
Grief research among American Indian (AI) and Alaska Native (AN) people has been limited to studies on historical trauma and elevated mortality rates among AI/ANs. A lack of validated measures is one barrier to grief research with AI/ANs. Therefore, we conducted three studies to develop and validate a culturally congruent measure of grief. In Study 1, interviews were conducted with 12 AI reservation-based community members to understand perspectives on grief. In Study 2, AI/AN community members (n = 10) and professionals (n = 7) provided feedback on measure items adapted or developed in Study 1. In Study 3, exploratory and confirmatory factor analyses using separate randomly selected samples from a web-based survey of 600 AI/ANs were conducted to identify the factor structure of the Complicated and Adaptive Grief Inventory for Native Americans (CAGI-NA). Findings suggest that the resulting 30-item CAGI-NA is valid, reliable, and suitable for use in research with AI/AN people.
Grief and loss are ubiquitous in American Indian (AI) and Alaska Native (AN) communities and affect health and wellbeing. The present research included three studies to develop a culturally grounded measure of grief for AI/ANs. Findings suggest that the Complicated and Adaptive Grief Inventory for Native Americans (CAGI-NA) has good psychometric properties and has potential utility for health disparities research, practice, and advocacy.Significance of the Scholarship to the Public
Losing a loved one is a universal human experience with wide-reaching impacts on an individual’s mental and physical health. The term bereavement refers to the experience of loss. In contrast, grief refers to the emotional, psychological, behavioral, social, and physical reactions people experience because of the death of someone close to them (Boerner et al., 2016). Grief reactions are shaped by cultural norms, religious and spiritual practices, and personal experiences with loss (Cable, 1998; Clarke et al., 2003). A person’s grief reaction in response to death can also be influenced by one’s relationship with the deceased and how the person died (e.g., sudden death or prolonged illness). Although grief may be experienced in response to losses other than death, and experiences with grief differ from person to person, a review of common reactions to loss found that people typically experience some form of affective, behavioral, cognitive, psychological, and somatic symptoms of grief after the death of a loved one (Stroebe et al., 2004).
Grief and loss are ubiquitous in American Indian (AI) and Alaska Native (AN) communities, with important physical and mental health implications. Many reasons exist for high loss rates and accompanying grief reactions among AI/ANs, including health disparities resulting in early mortality, underlying grief from historical trauma, and large social networks that increase the likelihood of an individual being affected by a given loss. Grief is often experienced communally by AI/AN people, as community members are connected not only by biological family relationships but also by expansive kinship relationships (Mohatt et al., 2004). A wider social network of relatives can increase access to social support in distress (Stumblingbear-Riddle & Romans, 2012). However, being related to more people also increases the likelihood of experiencing more frequent losses throughout one’s life. Given the close-knit relationships common in AI/AN communities, grief associated with losing an individual, even one outside of someone’s biological family or immediate social network, can have wide-reaching impacts across the entire community. Grief can also lead to maladaptive coping strategies, such as substance use, which may increase the risk of further losses.
In addition to grief from current losses, research suggests that AI/AN people are also affected by unresolved grief passed down from previous generations due to colonization. Historical trauma, or the cumulative emotional and psychological effects of mass trauma experienced across generations, is thought to cause this unresolved collective grief (Brave Heart & DeBruyn, 1998; Evans-Campbell, 2008). It is theorized that historically traumatic events cause a historical trauma response in descendants of victimized groups, which includes survivors’ guilt and unresolved grief (Evans-Campbell, 2008), as well as mental health problems such as substance use disorders (SUD) and suicide. If historical trauma is not addressed, these symptoms can be transmitted intergenerationally (Brave Heart & DeBruyn, 1998; Evans-Campbell, 2008) and may compound grief experienced in response to a contemporary loss. Experiencing a loss can trigger reminders of and exacerbate underlying historical grief.
In addition, health disparities leading to early mortality may contribute to widespread grief among AI/AN people. Frequent losses are common in many Native communities, and the resulting grief affects health and well-being. The average life expectancy for AI/AN people in the United States is 73 years, which is 5.5 years shorter than that of non-Native U.S. populations (78.5 years; Arias et al., 2021). Moreover, AI/ANs between the ages of 25 and 44 years experience the highest rates of death from any cause compared to other racial groups (Espey et al., 2014). High mortality rates among AI/ANs are attributed to high rates of suicide, fatal accidents, drug overdoses, alcohol-induced illnesses, and other chronic illnesses (Indian Health Services [IHS], 2021). Although experiencing grief after losing a loved one is normal, some individuals experience abnormal, prolonged, and impairing grief-related symptoms, which, within a Western psychological framework, can lead to Prolonged Grief Disorder (PGD; American Psychiatric Association [APA], 2022). Among AI/ANs, losses may be so frequent that one never has the chance to recover from a loss before another loss takes place.
Prolonged Grief Disorder
PGD, also known as persistent complex bereavement disorder or complicated grief, is characterized by disabling depression and posttraumatic stress disorder (PTSD) symptoms among surviving family and friends. Typical grief-related symptoms differ from PGD in the duration, severity, and level of distress associated with the intense emotional reaction to another person’s death (APA, 2022). Symptoms of PGD include (a) intense sadness or distress that does not improve as time passes, (b) continual yearning for the deceased person, (c) digestive issues, (d) continually ruminating on the death, (e) emptiness, (f) inability to perform daily activities, (g) loss of interest in hobbies, (h) fatigue, (i) hallucinations of the deceased, (j) loneliness, and (k) suicidal ideation (APA, 2022). To meet diagnostic criteria for PGD, an individual must have: (a) experienced the death of a loved one; (b) experienced one of four symptoms related to yearning, longing, and sorrow; (c) exhibited six of the 12 symptoms related to social and identity disruption; (d) experienced clinically impairing distress, and (e) had a grief-related impairment that lies outside of sociocultural norms (APA, 2022). Considering the fifth criterion, understanding cultural norms is essential for determining when someone meets PGD criteria or is experiencing complicated grief. There is no published literature regarding the appropriateness of PGD for AI/AN people or the prevalence of PGD in Native communities.
A valid and reliable measure of complicated grief has been developed and used in non-Native populations: the Inventory of Complicated Grief (ICG; Prigerson et al., 1995). The ICG is a 19-item grief inventory that assesses symptoms of complicated grief (e.g., preoccupation with loss, intense sadness or distress, suicidal ideation). Participants completing the ICG are asked to indicate, on a Likert-type scale, how frequently they experience complicated grief symptoms associated with the death of a significant person from 0 (never) to 4 (always). Items are summed to yield a total score. An analysis of the ICG’s factor structure revealed one factor representing complicated grief. Studies using the ICG have found that complicated grief symptoms predicted avoidant emotional coping (Schnider et al., 2007), greater risk of experiencing insomnia or chronic nightmares (Hardison et al., 2005), more substance use problems (Masferrer et al., 2017), and greater risk of experiencing suicidal ideation (Mitchell et al., 2004). Although initially validated with a group of White widowers (Prigerson et al., 1995), the ICG has been adapted for use in Spain (Masferrer et al., 2017) and Italy (Carmassi et al., 2014) in addition to being used with African American people living in the United States (Goldsmith et al., 2008; Laurie & Neimeyer, 2008). Although the ICG appears to be a useful measure of complicated grief symptoms, it fails to assess any adaptive elements of grieving that may play a role in coping with and adjusting to loss.
Adaptive Grief
Although most studies have focused on the negative aspects of grief and its association with mental illness and physical health problems, some research has shifted to include adaptive grieving elements. Adaptive grief is defined as a positive outcome experienced as a result of the grieving process, such as personal growth, spiritual growth or change, improved and more satisfying relationships, greater maturity, changed philosophy of life, and a positive influence on life goals (Gamino et al., 2000; Parker, 2005). The idea of adaptive grief is related to the notion of posttraumatic growth—while trauma is unequivocally harmful, there are situations in which moving through posttraumatic stress can result in positive changes in one’s life (Ortega-Williams et al., 2021). Studies examining predictors of adaptive grieving have found that people with a strong social support network of friends, family, and community members have a greater opportunity to rely on others for social support during the grieving process. Social support and adaptive coping strategies are linked to better grief outcomes and, for some people, positive personal growth in response to loss (Gamino et al., 2000; Parker, 2005). Although experiences of grief are negative, coping with grief can also lead to positive changes and personal growth.
Current Research
Despite disproportionally high mortality rates and the elevated risk of developing impairing grief-related symptoms among AI/AN people, research in this area is limited and primarily focuses on unresolved grief associated with historical trauma. AI research partners on our ongoing community-based participatory research (CBPR) project focused on understanding risk and protection for substance use on an AI reservation (Skewes et al., 2020) emphasized the need for additional research on grief. When assessing substance use patterns among people with current SUD, community partners noticed that the death of a loved one or the anniversary of a significant death was closely linked with relapse. Community partners stressed the importance of assessing complicated grief symptoms in future research on substance use. Although there are numerous measures of grief used in other populations (see Sealey et al., 2015 for a review), little work has been done to assess grief among AI/ANs (Baydala et al., 2006; Kaufert et al., 1999; Stone, 1998).
Moreover, grief measures developed and tested in non-Native populations have not been validated with AI/ANs and may not reflect experiences with grief from a Native perspective. Because cultural factors influence grieving (Koffman et al., 2005; Laurie & Neimeyer, 2008), grief measures developed with or informed by AI/AN perspectives may elicit different responses compared to measures designed with non-Native populations. Understanding cultural aspects of grieving among Native people could improve the measurement of grief symptoms and allow for more valid and reliable assessments of the impact of grief in Native communities. Therefore, our partnership determined that a culturally resonant measure of grief was needed to expand research on complicated grief with AI/AN people. The main goal was to develop a measure of grief that could be used in future studies on SUD recovery among tribal members and other studies designed to address health behaviors that may be affected by complicated grief.
In the current study, we aimed to culturally adapt the ICG to increase its cultural fit and usefulness for AI/AN health disparities research. We made this decision following discussions with AI research partners who shared that the PGD diagnosis and the idea of complicated grief as assessed by the ICG resonated with their experiences. In addition to adapting the ICG, items related to healing and growth after a traumatic event were selected for inclusion from the Posttraumatic Growth Inventory (PTGI; Tedeschi & Calhoun, 1996) to understand adaptive grieving and healing from the loss of a loved one. This decision was made as part of our research partnership’s emphasis on balancing risk factors with protective factors in studies taking place on the reservation. Including complicated and adaptive grief subscales in the measure would allow us to examine these factors independently and together as risk or protective factors for SUD relapse. Using a CBPR framework, we embarked on a series of studies designed to (a) understand cultural perspectives on grieving and elicit tribal members’ input on culturally adapting items from the ICG and PTGI to create a new measure of complicated and adaptive grief, and (b) test the psychometric properties of the resulting Complicated and Adaptive Grief Inventory for Native Americans (CAGI-NA). The overarching goal of this study was to develop a preliminary measure of complicated and adaptive grief that could be used to predict relapse in research studies with AI/AN people trying to change their substance use. The three studies in our measure development project are described below.
Study 1: Understanding Grief and Adapting/Developing Scale Items
To understand experiences with grief among AI/AN people who have experienced the loss of a close person and to identify ICG and PTGI items that may require adaptation, semi-structured interviews were conducted with 12 tribal members living on an AI/AN reservation. The criteria for participation included being an AI/AN person over 18 years old who had experienced a significant loss of a close person and had struggled with grief.
Method
Participants
Participant Characteristics for Studies 1, 2, and 3.
Note. Participants in Study 2 were not asked questions about cultural connection.
Procedure and Interview Protocol
Study materials were approved by the university’s IRB and tribal IRB before data collection. Participants were invited to participate in one-on-one Zoom interviews about their perspectives on grief and loss. Participants were informed that the interviews would involve discussions about death and grieving and told they should only participate if they wanted to discuss these sensitive topics. The first author conducted the semi-structured interviews under the supervision of the third author, who has maintained a longstanding research partnership with this community since 2014 (Skewes et al., 2020). Although both interviewers were outsiders to this community, they had been engaged in CBPR studies focused on substance use on this reservation for 6 years by the time the present data were collected. They were familiar with the culture and trusted by the study participants, which may have facilitated honest and forthcoming responses. Moreover, the second author is a trusted and well-known tribal member from the community who facilitated participant recruitment and advised all study methods.
Prior to each interview, participants received study materials by email, including copies of the measures being considered for adaptation (i.e., the ICG [Prigerson et al., 1995] and the PTGI [Tedeschi & Calhoun, 1996] as well as the proposed Diagnostics and Statistics Manual of Mental Disorder-5 criteria for PGD [APA, 2022]). Participants reviewed an informed consent form and gave verbal consent, including permission for video recording of the discussions, which were later transcribed verbatim and deidentified by trained research assistants. Interviews lasted approximately 1.25 hours (M = 1 hr 11min, SD = 19.86 min). At the end of the interview, participants were debriefed and compensated with a $35 gift card.
After answering questions about grief and loss, how grief manifests in this community, and signs of complicated and adaptive grief among AI/AN people, participants were invited to review and provide feedback on items from the ICG and PTGI and the PGD diagnostic criteria. Participants were asked to examine each item’s relevance and acceptability and to identify taboo subjects (Sidani et al., 2010). They suggested changes to improve the items’ cultural relevance to better fit AI/AN people and suggested items for deletion. Participants were then asked about cultural aspects of the grieving process they believed were missing from the study materials.
Materials
Background Questions
First, information about participants’ demographics and a brief grief history were gathered. Questions about prior experiences with loss were modeled on the Persistent Complex Bereavement Disorder Checklist-Youth Version (Kaplow et al., 2018). Five items from the Cultural Connectedness Scale-short version (CCS-S; Snowshoe et al., 2017) were also included to assess participants’ connection to their cultural identity, traditional practices, and connection to traditional Native spirituality.
Materials for Cultural Adaptation
Next, participants reviewed the items on the questionnaires they received prior to the interview (i.e., the ICG and PTGI) and the diagnostic criteria for PGD. In addition to the ICG, items from the PTGI were also considered for cultural adaptation. The PTGI is a 21-item measure that assesses how people adaptively change following a traumatic experience. This measure has five subscales assessing personal growth, including (a) relating to others (e.g., “I have a greater sense of closeness with others”), (b) new possibilities (e.g., “I developed new interests”), (c) personal strength (e.g., “I have a greater feeling of self-reliance”), (d) spiritual change (e.g., “I have a better understanding of spiritual matters”), and (e) appreciation of life (e.g., “I can better appreciate each day”). The interviewer led study participants through each item and diagnostic criterion, asking for feedback and suggestions for revisions that would improve the cultural fit for AI/ANs. In this manuscript, we report the data analysis strategy and findings specific to the questions about measure items; thorough qualitative findings from the discussions about cultural conceptualizations of grief and loss are reported elsewhere (Skewes et al., 2020).
Data Analysis
Thematic analysis techniques were used to identify themes within the data related to complicated grief (CG) and adaptive grief (AG). A thematic approach to data analysis focuses on identifying, analyzing, and interpreting patterns within qualitative data (Braun & Clarke, 2006). First, trained research assistants familiarized themselves with the data by transcribing interviews verbatim. Next, the coding team identified themes related to CG and AG and used participant feedback to generate a list of possible new items representing CG and AG. Suggested item revisions and new items were provided to five undergraduate research assistants, who then read the transcripts and extracted information relevant to item modifications. Once excerpts were compiled from the transcripts, our team reviewed the suggested modifications and assembled a pool of items for further testing. These modifications were then compared to field notes taken by the first and third authors to ensure information was not missed during the coding process. Based on the participants’ suggestions, items were changed, added, or removed from the ICG and PTGI measures.
Results
Item Revision
There were many overlapping areas between participants’ experiences with grief and healing and the original items from the ICG and PTGI. For example, when participants discussed their experiences with loss, they commonly reported feeling lonesome or empty. Feelings of loneliness and emptiness were represented in the ICG with items such as: “I feel that life is empty without the person who died” and were deemed appropriate to include without adaptation. For some items, participants suggested minor modifications (for example, replacing the term “what happened” with “my loss” to clarify the item’s intended focus on losing a loved one). The definition of “close people” was revised to include family and community members who may not have been biologically related to the participant, as participants asked for greater clarification of this term and noted the importance of extended kinship networks in AI/AN communities.
When participants reviewed the PTGI, they identified items related to spiritual change (e.g., “I have a better understanding of spiritual matters since my loss”) and relating to others (e.g., “I more clearly see that I can count on people in times of trouble”) as important aspects of adaptive grief for AI/AN people. One frequently suggested modification was to specify that the life changes were related to losing a loved one. For example, “I have changed my priorities about what is important in life” was edited to include “since my loss” to clarify that these changes were associated with the grieving process. In total, 29 items were revised from the ICG and PTGI, which were categorized into CG (n = 18) and AG (n = 11) items.
Item Development
Significant cultural disconnects were identified during the interviews in three domains: (1) memories of the deceased, (2) communications with the deceased (i.e., “visits”), and (3) connection with community and culture. To capture these missing themes, 17 CG and 14 AG items were developed for inclusion in the culturally adapted measure.
Memories of the Deceased
Participants raised concerns about the original ICG item “Memories of the person who died upset me,” as participants felt this question asked if they had negative thoughts about the person who died. Culturally, it was considered taboo to admit having negative thoughts about someone who died; instead, people should focus on positive memories. One person said: “We don’t think bad of people. When you remember a lost loved one, it always puts a happy smile on your face and possibly brings a tear to your eye” (P8). To address this conceptual difference, participants suggested asking a question about the positive reminiscence of a loved one instead. The items “I enjoy remembering or talking about the person I lost” and “I often remember funny stories about the person who died” were added to the item pool to represent positive memories. It was also suggested that if questions about negative memories were included in the adapted measure, it would be important to differentiate between having negative thoughts about someone who died and being upset about memories that reminded people of their loss. Negative memories, while hard to admit, were deemed to be indicators of complicated grief. The items “It is easier to remember upsetting memories of the person who died than happy ones” and “I often think about what my loved one might have been if they were still alive” were added to capture negative aspects of reminiscence that suggest a complicated grieving process.
Communication With the Deceased
The original ICG included the items “I sometimes hear the voice of the person who died speak to me” and “I sometimes see the person who died stand before me” as signs of complicated grief. When participants reviewed these items, they indicated that seeing or speaking with their loved ones was a generally positive and normative cultural experience. For many AI people, being able to communicate with a loved one who passed away is a sign of healing from grief. Participants also stated that if a loved one communicated with them, they tried to provide guidance. One participant said, I think our relatives on the other side are in a totally different understanding and space of life that we don’t comprehend here, and so I think death is so scary for us because we don’t understand it. In my experience and conversations with people and in my own experience with the people who have visited me, it’s always more or less like reassurance… because we find ourselves worried, [but] our relatives on the other side want to help us. (P4)
While the message received during a visit might be upsetting, it was still considered a positive experience. The items “I welcome visits from the person who died in my dreams or visions” and “I enjoy communicating in prayer with my relatives who have passed on” were added to the item pool to reflect the positive aspects of communicating with a loved one who had died. Items were also added to capture this indicator of maladaptive grief (e.g., “I would not want to hear the voice of the person who died speak to me,” and “Dreams of the person who died would upset me”).
Connection With Community and Culture
Themes related to isolation and connection during the grieving process emerged as a culturally embedded phenomenon. Specifically, in the Native culture of this reservation, it was a traditional practice to isolate oneself and stop attending ceremonies or social events for one year after the death of a loved one. That 1 year is asking the Creator for a time out from the things in life for that family so they can mourn, process, and feel the emotion. At the end of that one year, you’re not asking them not to grieve anymore, but you’re asking them to stop crying and to allow that spirit to pass on. (P1)
Once this 1-year isolation and mourning period had passed, bereaved people traditionally participated in a wiping of the tears ceremony in which they were encouraged to end their mourning and reconnect with the community. In this cultural context, isolation is not viewed as a negative aspect of grieving until after the 1-year mourning period, and healing from loss is reflected in reconnecting with the community. Items were added to the adaptive grief scale to capture this reconnection to community and culture after one’s loss (e.g., “I am reconnecting with my family or community since my loss” and “I have gone back to ceremony or other cultural traditions since my loss”).
Study 2: Expert Review of Items
Following Study 1, we modified items from the existing ICG and PTGI and generated new items to represent indicators of complicated and adaptive grief that participants believed were missing from the original measures. In Study 2, a pool of 60 items for the new CAGI-NA was presented to a sample of 17 expert respondents for pretesting.
Method
Participants
Participants were AI/AN community members (n = 10; 58.8%) and AI/AN researchers and mental health practitioners (n = 7; 41.2%) from both rural and urban communities in the United States. Several of the community member participants (n = 6; 35.3%) were also participants in Study 1. The sample included women (n = 5; 29.4%) and men (n = 12; 70.6%) between 25 and 69 years of age (M = 45.41; SD = 14.10). All participants reported having a college degree (see Table 1).
Materials
The pooled grief measure items adapted or generated following Study 1 were entered into a Qualtrics survey. The item pool included 35 items representing CG and 25 reflecting AG.
Procedure
Participants were asked to rate each item on clarity (i.e., “This item makes sense;” “It would be easy for me to answer this item”) and cultural acceptability (i.e., “This item is culturally appropriate for Native American people”). Participants were also asked to indicate how well each item reflects CG (i.e., “This item is a good reflection of how Native American people feel when they are struggling with a significant loss”) or AG (i.e., “This item is a good reflection of how Native American people feel or behave when they are healing after a significant loss”), respectively. Items were rated on a Likert-type scale from 1 (strongly disagree) to 5 (strongly agree), with higher scores indicating that items were culturally appropriate and easy to understand. Participants were also invited to provide qualitative feedback addressing any concerns or comments about each item, followed by a final question asking them to suggest additional items that may be missing from the measure. Participants received a $20 gift card for their time.
Data Analysis
Aiken’s coefficient (V) was used to quantitatively assess item quality (Aiken, 1980). Aiken’s coefficient allows researchers to calculate a rating for each item based on the participants’ item evaluation scores on cultural acceptability and item clarity (Aiken, 1980; Penfield & Giacobbi, 2004). The formula for Aiken’s V (V = (X - l) / k) is the sample mean of each item rating (X) minus the lowest possible rating score for each item (l). This value is then divided by the range of possible values for each item (k) to get each item’s content-relevance score (V). Aiken’s V is commonly used in psychometric studies and has been shown to adequately assess the quality of measure items (Penfield & Giacobbi, 2004; Retnawati, 2016). Aiken’s V scores range from 0 to 1, with higher values indicating higher quality (Penfield & Giacobbi, 2004).
Comprehension and cultural appropriateness V scores were calculated separately for community members and academics/professionals. The quality of items was determined by comparing the V value of each item with specific criterion values. Values between 1–0.70 indicate high item quality, values between 0.69–0.40 indicate medium item quality, and values between 0.39–0 indicate low or no item quality (Divayana et al., 2019). Items with Aiken’s V scores below 0.70 were considered for removal from the item pool.
Results
Complicated Grief Items
The Aiken’s V scores for the item comprehension and cultural appropriateness ratings revealed 18 items with a V score below 0.70. Participants rated 10 items below the acceptable threshold on both item comprehension and cultural appropriateness. Eight additional items received low cultural appropriateness V scores but adequate comprehension V scores. These items reflected themes related to upsetting memories of the deceased (e.g., “Memories of the person who died upset me”), fear of communicating with the deceased (e.g., “I would not want to see the person who died in my dreams”), negative feelings towards the deceased (e.g., “I have found it difficult to forgive the person who died”), negative emotions about loss (e.g., “I feel angry or bitter about my loss”), and physical symptoms (e.g., “I have pain in the same area of my body or have some of the same symptoms as the person who died”). Item inclusion was determined using comprehension and cultural appropriateness V scores and qualitative feedback. Ten items were removed, 20 were edited, and five were left unchanged from the item pool.
Adaptive Grief Items
Overall, both professional and community member participants rated the AG items more favorably than the CG items. Only two AG items received cultural appropriateness V scores below 0.70 and no items received inadequate comprehension V scores. Low-scoring items and other adaptive grief items were revised using qualitative feedback provided by participants. Altogether, seven items were removed from the adaptive grief item pool. Six items were removed because they overlapped with other items that participants rated more positively. One item about spiritual connection (“I have a stronger spiritual connection or belief system since my loss”) was removed and replaced with a new item suggested by participants (“Healing ceremonies and practices [e.g., giveaways, wiping of the tears] following my loss brought me great comfort”).
General Measure Edits
One overarching concern raised by participants was using the terms “died” or “death” in the items. Participants suggested that using “passed” or “passed on” would be more culturally appropriate, as people with traditional Native spiritual beliefs view death as the passing of the spirit from the body to join one’s ancestors in another realm of existence. With this concern in mind, CG and AG items were edited to avoid using the terms “died” or “death” to improve the measure’s cultural appropriateness. Also, because of the extent of losses experienced by AI/AN participants, two questions were added at the end of the revised grief measure to inquire which loss the respondent was thinking about when completing the measure. These new items are: “Who were you thinking of when you answered these questions (friend, parent, sibling)?” and “When did this person pass on (month/year)?” This addition was intended to provide insight into participants’ experiences with loss that might influence their responses.
Study 3: Exploratory and Confirmatory Factor Analysis
Based on the results of Study 2, the CAGI-NA was revised, and the resulting 45-item measure was administered to a sample of 600 AI/AN participants over the age of 18 who had experienced a significant loss of a person close to them. An exploratory factor analysis (EFA) and a confirmatory factor analysis (CFA) were conducted using separate randomly selected samples from the survey data (n = 300 each) to determine the appropriate factor structure of the culturally adapted measure. Measures of mental health symptoms, substance use problems, historical trauma, and cultural connection were also administered to examine the construct validity of the CAGI-NA. Measures of anxiety, depression, PTSD, and substance use problems were included as they were positively associated with the ICG (Masferrer et al., 2017; Prigerson et al., 1995) and negatively associated with the PTGI (Long et al., 2021; Tedeschi & Calhoun, 1996; Whaley & Mesidor, 2021) measures from which the CAGI-NA was adapted. Study 1 participants also identified these factors as symptoms of complicated grief, and improvements in these symptoms were considered signs of healing. Finally, measures of cultural connection and historical trauma measures were included in the analysis as participants in Study 1 thought that historical trauma would exacerbate complicated grief and that a greater connection to AI/AN culture would help people cope with grief.
Method
Participants
Participants were 600 AI/AN people across the United States aged 18 to 79 years (M = 39.31, SD = 14.26). The majority of the sample identified as female (n = 425, 70.8%) and male (n = 156, 26%), but other genders were also represented (n = 19, 3.2%). See Table 1.
Materials
Background Information
Participants answered demographic questions (e.g., age and gender) and questions about their spiritual affiliation (“What is your religion or faith-based affiliation, if any?”). Questions about experiences with loss based on the Kaplow et al. (2018) screening tool described in Study 1 were also included (e.g., “What was your relationship to the person/people you lost in the past two years?”).
Complicated and Adaptive Grief Inventory for Native Americans
The initial 45-item
CAGI-NA was included in the survey. Items assessed aspects of complicated grief (e.g., “I feel that life is meaningless without the person who passed”) and adaptive grief (e.g., “Since my loss, I have found new opportunities to help others and serve my community”). Participants were asked to think of a loved one whose loss had greatly impacted them and select the response that best described their experience. Response options ranged from 0 (never) to 4 (always), and at the end of the measure, participants were prompted to indicate who they were thinking of when they responded to the items and when this person had passed.
Mental Health Measures
The Primary Care PTSD Screening Tool for DSM-5 (PC-PSTD-5; Prins et al., 2016) is a 5-item PTSD screening tool originally designed for use in medical settings. A description of traumatic events is provided, followed by a prompt for participants to indicate whether they have ever experienced such an event (yes or no). Participants who have experienced a traumatic event are then asked about PTSD symptoms. For example, “In the past month, have you had nightmares about the event or thought about the event when you did not want to?” Dichotomous (yes/no) responses are summed for a total score ranging from 0 to 5. Scores of 3 or greater signify that participants may meet the diagnostic criteria for PTSD. Internal consistency for the PC-PTSD-5 in the present sample was good (α = 0.89).
The Hospital Anxiety and Depression Scale (HADS; Snaith, 2003) is a 14-item measure used to assess current symptoms of depression and anxiety. The depression and anxiety subscales are comprised of seven items each, and participants are asked to rate the extent to which they experienced each symptom in the previous week on a four-point response scale (0–3). Responses are summed to yield a total score for each subscale ranging between 0–21, with scores greater than 11 signifying a possible clinical diagnosis. Subscales demonstrated good internal consistency in the present sample (depression α = 0.84; anxiety α = 0.85).
Substance Use Problems
The Alcohol Use Disorders Identification Test-Consumption (AUDIT-C; Bradley et al., 2007) is a brief version of the 10-item self-report AUDIT screening tool for hazardous drinking developed by the World Health Organization (Saunders et al., 1993). The AUDIT-C includes 3 items assessing the quantity and frequency of alcohol use and frequency of binge drinking (i.e., six or more drinks in one sitting). Items are scored from 0 to 6, and responses are summed to yield a total score ranging from 0–18, with higher scores indicating greater likelihood of an alcohol use disorder. Internal consistency for the AUDIT-C was good in the present sample (α = 0.88).
The Drug Abuse Screening Test (DAST-10; Skinner, 1982) is a 10-item self-report screening tool for problematic drug use in the past 12 months. A description of drug use was provided, which clarified that this measure asks about the use of drugs other than alcohol. Participants are asked to respond yes or no to questions about specific drug use behaviors, with yes responses coded as 1 and no responses coded as 0. Responses are summed to yield a total score ranging from 0 to 10, with higher scores indicating a greater likelihood of having a drug problem. Internal consistency for the DAST was good in the present sample (α = 0.92).
Historical Trauma
The Historical Loss Scale (HLS; Whitbeck et al., 2004) is comprised of 12 items asking participants to indicate how often they think about specific historical losses experienced by AI/AN people on a Likert-type scale ranging from 1 (never) to 6 (several times a day). Responses are summed to yield a total score, with higher scores indicating greater historical trauma. The HLS demonstrated good internal consistency in the present sample (α = 0.95).
Cultural Connection
The 10-item Cultural Connectedness Scale-Short Version (CCS-S; Snowshoe et al., 2017) described in Study 1 assessed participants’ connection to their AI/AN heritage. Five items with a dichotomous (yes/no) response scale were given values of 5 for each yes response and values of 1 for each no response. The remaining five items were scored on a 5-point Likert-type scale from 1 (strongly disagree) to 5 (strongly agree). Responses were summed for a total score, with higher values indicating greater cultural connection. In addition to the total score, subscale scores for identity, traditions, and spirituality were calculated. Internal consistency for the full CCS-S was adequate in the present sample (α = 0.78).
Procedure
Survey measures were entered into a Qualtrics web-based survey and then distributed to a sample of AI/AN participants to reach a quota of 600 completed responses. Participants were recruited and compensated by a Qualtrics research management team. Prior to starting the survey, participants were presented with a digital informed consent form explaining the purpose and nature of the study. They clicked agree to give electronic informed consent and were presented with survey items. Participants spent approximately 20 minutes completing the survey and received $12 for their time. To ensure data quality, the Qualtrics team screened for abnormally fast survey completion times, used a unique one-time passcode to prevent multiple responses, and used reCAPTCHA technology to detect the likelihood that participant responses came from a bot.
Data Analysis
Descriptive statistics and bivariate correlations were calculated using SPSS version 26.0. Prior to data analysis, variables were screened for skewness, kurtosis, and multivariate outliers using Mahalanobis distance. The AUDIT and DAST scores were positively skewed and transformed using a square root transformation. There were no missing data across study measures.
Exploratory and Confirmatory Factor Analyses
In SPSS, we explored repose distributions for each item to confirm adequate variation to continue with psychometric analyses. Following factor analysis guidelines (Tabachnick et al., 2007; Williams et al., 2010), we conducted a principal axis factoring (PAF) analysis to explore the number of latent variables underlying the set of items by assessing the number of eigenvalues > 1, generating scree plots and conducting parallel analysis to gauge the number of factors above the curve (for scree plot) or line (parallel analysis). Using Mplus, structural equation modeling (SEM), EFA, and CFA were conducted on a randomly selected subset of the sample (n = 300 for each analysis). An EFA was performed on the preliminary CAGI-NA to group items into a set of factors representing thematically similar constructs (Tabachnick et al., 2007; Williams et al., 2010). Based on findings from the PAF and EFA model, items with low uniqueness (< 0.7), high factor loadings (> 0.3), and that were conceptually necessary and interpretable were retained for the CFA model (Tabachnick et al., 2007). After trimming items, the model was re-estimated with models containing between one and seven-factor solutions. The EFA was performed using maximum likelihood estimation and a Promax oblique rotation.
Next, we conducted a CFA using the second half of the sample to test the emergent factor structure suggested by the EFA. The CFA used maximum likelihood estimation. The adequacy of model fit for the EFA and CFA models was determined by the following criteria: nonsignificant chi-square (χ2), comparative fit index (CFI) ≥ 0.90, Tucker-Lewis Index (TLI) ≥ .90, root-mean-square error of approximation (RMSEA) ≤ 0.08, and standardized root-mean-square residual (SRMR) ≤ 0.08, and lower Akaike Information Criteria (AIC) and Bayes Information Criteria (BIC) scores (Finch, 2020; Tabachnick et al., 2007). Finally, we compared nested models using the Sattora-Bentler scaled chi-square test (TRd; Bryant & Satorra, 2012).
Construct Validity
Bivariate correlations were calculated between the confirmed factors from the CAGI-NA and other study variables to examine construct validity. Significant positive correlations between the CAGI-NA and conceptually related variables were considered evidence of convergent validity, and nonsignificant correlations between the CAGI-NA and conceptually distinct variables were considered evidence of discriminant validity (Domino & Domino, 2006).
Results
Exploratory Factor Analysis
Model Fit Estimates from the CAGI-NA Exploratory Factor Analysis.
Note. CAGI-NA = Complicated and Adaptive Grief Inventory for Native Americans. The 7 factors had Eigenvalues ≥ 1. The four-factor solution was selected as the best fit for the CAGI-NA. However, factor one and factor two in this model were highly correlated and represented theoretically similar constructs; therefore, they were merged into a single factor.
Although models with five, six, and seven factors fit the data better, meaningful concepts could not be derived from the additional factors. For example, the additional three factors were highly correlated with factors in the four-factor model, and two were comprised of only two items. Guidelines suggest that factors should be comprised of more than three items to capture a concept accurately (Costello & Osborne, 2019). The four-factor solution provided the most parsimonious model and was a good fit for the data, χ2(373) = 639.37, CFI = .93, TLI = .92, RMSEA = 0.05 [0.04–0.06], SRMR = .03, AIC = 34650.89, BIC = 35143.35. After reviewing the EFA results and item loadings, factors one and two were highly correlated and appeared to be conceptually similar. Therefore, we merged these factors and retained a three-factor model. The three-factor model had adequate fit, χ2(403) = 822.35, CFI = .91, TLI = .92, RMSEA = 0.05 [0.05–0.07], SRMR = .04, AIC = 27819.524, BIC = 28401.02, and was statistically stronger (TRd = 30.98, p = .415) than the four-factor model.
Factor Loadings from the Exploratory Factor Analysis for the CAGI-NA (n = 300).
Note. CAGI-NA = Complicated and Adaptive Grief Inventory for Native Americans, Factor 1 = complicated grief, Factor 2 = adaptive grief, and Factor 3 = memories and communication. Bold values indicate a factor loading ≥ 0.30.
Confirmatory Factor Analysis
Standardized Factor Loadings from the Confirmatory Factor Analysis of the CAGI-NA (ω = .873).
Note. CAGI-NA = Complicated and Adaptive Grief Inventory for Native Americans, CG = Complicated Grief, AG = Adaptive Grief, and MC = Memories and Communication. All factor loadings were significant at p <. 001. ω = omega coefficient.
Bivariate Correlations
CAGI-NA Variable Correlations.
Note. p < .05*, p < .01**. CAGI-NA = Complicated and Adaptive Grief Inventory for Native Americans.
Convergent validity for the AG subscale was demonstrated by significant positive associations with cultural connectedness (r = .45, p = .023) and time since the most significant loss (r = .12, p =.037). There also were significant negative associations with anxiety (r = –.19, p =.036), depression (r = –.12, p = .029), alcohol use problems (r = –.13, p =.021), drug use problems (r = –.12, p = .016), and historical trauma thoughts (r = –.25, p =.017). Discriminant validity for the AG subscale was demonstrated by nonsignificant correlations with PTSD symptoms (r = .04, p = .542), number of funerals attended in the past year (r = .04, p =.988), and number of losses in the past two years (r = .02, p = .803).
Finally, the MC subscale was positively correlated with cultural connection (r = .32, p = .016), historical trauma (r = .42, p = .013), and time since loss (r = .20, p = .032). MC was not significantly correlated with PTSD (r = .08, p = .846), depression (r = –.01, p = .972), anxiety (r = .03, p = .432), alcohol use problems (r = .08, p = .487), drug use problems (r = .06, p = .523), funerals attended in the past year (r = –.02, p = .551), or number of losses in the past two years (r = .07, p = .868).
Discussion
The current project aimed to (a) work with AI/AN community members to culturally adapt the ICG and PTGI to create a new, culturally resonant measure of complicated and adaptive grief and (b) test the psychometric properties of the resulting CAGI-NA. The final CAGI-NA measure included 30 items measuring complicated grief, adaptive grief, and memories and communication. The CAGI-NA provides three separate scores by summing the items for CG (19 items; scores ranging from 0–76), AG (7 items; scores ranging from 0–28), and MC (4 items; scores ranging from 0–16). Higher scores on the complicated grief subscale were associated with more complicated grief symptoms and poorer mental health outcomes. Higher scores on the adaptive grief subscale were associated with better mental health outcomes. Higher scores on the memories and communication subscale reflected more time thinking about and communicating with the deceased loved one and were associated with both complicated and adaptive grief.
In our ongoing research on substance use with a rural reservation community, grief emerged as a possible risk factor for relapse. The impact of grief on health behaviors and outcomes in AI/AN populations is not established in the literature, as few studies have examined grief among AI/AN people, and none have quantitatively assessed complicated grief from contemporary losses. To balance the risk associated with complicated grief, it also is important to assess signs of healing from grief and personal growth resulting from grieving in a healthy way. The decision to include risk and protective factors in our measure was based on past research suggesting that both are needed to understand health and wellbeing in AI/AN communities (Bryant et al., 2021; Verney et al., 2016).
A culturally relevant measure of complicated grief is needed for research in this area to progress. To address this gap in the literature, we conducted three studies to develop a new measure of complicated and adaptive grief to be used in future research aimed at predicting substance use and other health behaviors. This research is an important contribution to both the grief and AI/AN health disparities literature as it is the first study to assess complicated and adaptive grief among AI/AN populations. The need for a culturally relevant measure of grief was evident, as participants in Studies 1 and 2 were able to identify elements of grief that were different for AI/AN people and not captured by existing measures developed in non-Native populations. Grief is deeply rooted in culture, traditions, and religious or spiritual practices. It is important to understand how different groups grieve to know when it is appropriate to intervene, as grief symptoms or coping behaviors become harmful to a person’s mental and physical health.
One culturally rooted aspect of the CAGI-NA is the Memories and Communication subscale. In Studies 1 and 2, participants reported that memories and communication with a deceased loved one were culturally normative and may be signs of CG or AG, depending on how they were experienced by the individual. In Study 3, MC items emerged as an independent factor positively associated with both CG and AG, supporting the findings from Studies 1 and 2. The MC factor was associated with cultural connection and historical trauma, which suggests that people who are more rooted in their cultural practice and traditional spirituality may have different reactions to memories or manifestations of a lost loved one. Further research is needed to understand the role of memories and communication in the grieving process for AI/AN people and to identify the circumstances in which MC reflects difficulty with grief and healing from grief.
Another culturally relevant finding that emerged from this research was that AI/AN people reported grieving multiple losses of loved ones at a time, as more than half of the participants reported losing two or more loved ones in the past 2 years. This differs from other grief research conducted in non-Native populations, as studies primarily focus on the loss of one specific loved one (e.g., partner, parent, child; Sealey et al., 2015). In the case that a person is grieving the loss of a singular loved one, we conceptualize complicated and adaptive grief as a continuum. That is, as a person heals, they will have more adaptive grief and less complicated grief. However, we found the association between these factors to be small in the current sample. It is possible that for people experiencing multiple losses, there may not be a strong relationship between complicated and adaptive grief. It could be that faced with the distress of multiple losses, complicated grief keeps increasing, but adaptive grief may eventually plateau as people start the grieving process anew with each loss. It also may be that someone experiences complicated grief in response to one loss at the same time they experience adaptive grief associated with a different loss. More research is needed to better understand how compounded grief-related distress influences healing for AI people.
One difference between the present research and other grief measurement studies is that our participants did not have to meet diagnostic criteria for PGD to take part in the study. This might explain why the CAGI-NA was not correlated with PTSD and had low to moderate effect sizes for mental health and substance use measures. This finding is contrary to other studies that found positive associations between PTSD symptoms and complicated grief (Kaplow et al., 2018; Stroebe et al., 2004). One possible explanation for the nonsignificant relationship between PTSD symptoms and complicated grief could be attributed to the PTSD measure used in the current study. The 5-item Primary Care PTSD Screening Tool was used in place of the full 20-item Posttraumatic Checklist, which could account for the findings. Another possible explanation is that the complicated grief items in the CAGI-NA are not capturing “traumatic” grief, but rather typical experiences of grief that may not be pathological in this population. Also, previous research with the ICG was conducted with clinical samples (Kaplow et al., 2018); the use of a community sample in the present research also may explain this finding. Further testing of the CAGI-NA with subgroup analyses of high, moderate, and low complicated and adaptive grief may reveal more robust effect sizes for mental health, substance use, historical trauma, and cultural connection associations.
The positive association between complicated grief and historical trauma supports research related to the historical trauma response, which theorizes that descendants of historically traumatized groups can manifest mental health problems and experience symptoms of survivor’s guilt related to past cultural traumas (Brave Heart & DeBruyn, 1998; Evans-Campbell, 2008). This suggests that greater historically unresolved grief could compound contemporary grief experiences, making coping with current losses more challenging. This is further supported by the negative relationship between historical trauma and adaptive grief. People who have less historically unresolved grief could be better able to cope with current losses. Conversely, people who are better able to cope with current loss may develop skills that help them cope with historical loss as well.
Cultural connectedness was positively associated with adaptive grief, lending support to findings from Study 1. Participants in the interviews indicated that connecting to their Native culture helped them cope with loss. For Native people, connection to traditional spirituality is a key aspect of cultural connectedness. Research conducted on grieving and religion found that involvement in religious practices can give people outlets to cope with their loss and access to a social support network (Hawthorne et al., 2016). Adhering to traditional spiritual and cultural practices may be similarly helpful for coping with loss. Native people who observe traditional spiritual ceremonies have a built-in social support network in their community. Observing traditions related to grief (e.g., 1 year of mourning, wiping of the tears ceremony at the end of the year) can give people a script for coping with loss and a way to find meaning in loss. As participants in Study 1 reported feeling lost in grief, it is possible that a greater connection to culture could provide guidance and support for coping with loss and growing from grief.
Strengths and Limitations
A major strength of this research project was its grounding in a CBPR framework and focus on a community-derived research question. Through the course of an ongoing CBPR research project focused on substance use, community partners identified grief from recent losses as a contributor to substance use problems among their people. As this research question originated from the community, participants were enthusiastic about the topic, reflecting a locally relevant concern and facilitating recruitment. Despite this enthusiasm, it was important to approach the topic of grief in a nonstigmatizing way that emphasized both complicated and adaptive aspects of grief. Including both signs of struggling with grief and signs of healing is unique to the CAGI-NA and allows for a more nuanced understanding of grief and healing among Native people.
One potential limitation of this research was the use of nonrandom sampling methods. Participants in Studies 1 and 2 were invited to participate in the research based on recommendations from the second and third authors, who have knowledge of the community. The majority of participants were adults over the age of 30 years who were closely connected to Native cultural and spiritual practices. Findings from these studies may not generalize to adolescents and young adults or people who are not as connected with their Native heritage. Moreover, aspects of grieving and healing may differ across reservations and tribal groups, and the CAGI-NA may need to be tailored for use with a specific cultural group. Participants in Studies 1 and 2 also had higher educational levels than the sample used in Study 3. People with greater education attainment could have different perspectives on grief, leading to low-scoring items among the less educated sample in Study 3. Also, the Study 3 sample was from a different population than that used in the initial measure development studies. Participants in Study 3 were AI/AN people from across the United States, and whether they resided on or off a reservation is unknown. However, estimates of validity suggest the CAGI-NA has utility beyond the community for which it was developed.
Another limitation is using a single sample to conduct both the EFA and CFA. When items were removed during the EFA and then tested in the CFA final model, the removed items may have accounted for some variability in the retained items. Additional work is needed to test the CAGI-NA in other samples to ensure the final measure was not influenced by the removal of items during the EFA. Also, CAGI-NA items were not randomized in Study 3, and the order of items presented could have influenced the participants’ responses. Regarding other mental health assessments, the measures used in this study (e.g., PC-PTSD-5 and HADS) have not been validated in AI/AN populations. As this study was based on cultural differences in experiences with grief, there may also be cultural differences in the expression of PTSD, anxiety, and depression that could influence the current findings.
It is important to note that the CAGI-NA is not intended to be a comprehensive measure of normative grieving patterns in AI/AN populations. Instead, it was designed to assess aspects of complicated and adaptive grief to predict health behaviors such as substance use in health disparities research. Another limitation is that all data were collected during the COVID-19 pandemic, which significantly impacted Native communities. Not only were there significant losses from the virus, but COVID-19 also disrupted traditional communal grieving practices. Experiencing the loss of a loved one during the pandemic may have amplified complicated grief by making it more challenging to rely on social support and other communal-based coping skills.
Finally, we acknowledge the limitations inherent in our decision to use the term Native American when naming the CAGI-NA. All three studies assessed grief for AI/AN people living in the United States. While there may be potential overlaps in complicated and adaptive grief between AI/ANs and other Indigenous communities, we recognize that this measure may not be appropriate for all Indigenous populations. We believe the term Native American best describes the population that contributed to the development of the CAGI-NA. However, the measure items and title may warrant adaptation and tailoring for use in a specific tribal community.
Future Directions
The development of the CAGI-NA as a tool for assessing complicated and adaptive grief creates future health equity research opportunities. First, additional validation studies are needed to replicate these findings and evaluate the CAGI-NA’s psychometric properties in other samples. Research comparing the CAGI-NA with the nonadapted ICG and PTGI would help determine whether the adapted measure has incremental validity and can better predict grief-related outcomes than existing assessments. In addition, further exploration of the MC subscale is needed to understand when and for whom experiencing memories and communication with a deceased loved one reflects complicated vs. adaptive grief. Study 1 participants reported that visits from lost loved ones were culturally normative and found the original ICG items about seeing or hearing the voice of a deceased relative to be poor indicators of complicated grief. However, in Study 3, the MC subscale was associated with both CG and AG. Future research is needed to understand whether the MC subscale accurately reflects CG or AG, or if it is better understood as a marker for cultural identity or embeddedness.
Measurement invariance testing is another important future direction for this research. Additional studies with diverse samples of AI/AN people could shed light on possible differences in the CAGI-NA between rural and urban AI/AN populations or between people from different tribal groups. More research also is needed to test for differences in complicated and adaptive grief based on age. For example, someone in older adulthood with greater life experience may have experienced more loss over time, or they may have developed strategies to cope with loss that younger people have not. Efforts should be made to include more AI/AN males, other genders, and younger participants in future studies, as these populations were underrepresented in the current project. Future research is also needed to develop a short-form version of the CAGI-NA for use as a screening tool in clinical settings.
Aside from measure refinement studies, further research is needed to better understand complicated and adaptive grief in Native populations. For example, Native people in these studies reported losing numerous people in two years, meaning they are coping with more than one loss at a time. Grief research conducted in White populations has focused on losing one specific person (e.g., spouse, child, or parent; Sealey et al., 2015). However, in Native populations, it may be more appropriate to focus on cumulative experiences of loss rather than on one specific loss. Longitudinal research and ecological momentary assessment studies could improve understanding of how complicated and adaptive grief change over time in the face of frequent losses. Further research also is needed to understand the effects of social determinants of health (e.g., poverty, racism) on complicated and adaptive grief experiences. Finally, prospective studies are required in order to determine whether and how changes in complicated and adaptive grief affect health behaviors and outcomes among AI/AN people.
Implications for Practice, Advocacy, Education and Training, and Research
The present research has important implications for practice, advocacy, education and training, and research. Counselors should be aware that many AI/AN clients experience repeated losses and may experience complicated grief after loss, which may contribute to mental health problems such as anxiety, depression, PTSD symptoms, and substance use. Clients seeking mental health care may benefit from screening to determine whether complicated grief plays a role in their current symptomatology. Assessing adaptive grief also may help identify signs of healing and growth after loss. The CAGI-NA may be useful in clinical settings in case conceptualization, treatment planning, and measuring change over time.
Advocacy is needed to support AI/AN communities in making structural, systems-level changes to decrease the significant losses faced by Native communities. The CAGI-NA may be useful for raising awareness about the pervasiveness of loss and the need for social justice approaches to improve health equity in tribal communities. For example, poverty, racism, poor environmental conditions, underfunded health care systems, and food insecurity affect many Native communities and contribute to high rates of chronic disease (Warne & Lajimodiere, 2015). These health inequities lead to disproportionate rates of losses among AI/AN people and warrant concerted advocacy efforts.
The present results also can be used in education and training of counselors and other health professionals working with AI/ANs. Health care providers should understand that repeated and impactful losses are common in Native communities and can result in complicated grief, and complicated grief in turn may be associated with mental and physical health symptoms as well as health behaviors. Education and training focused on asking about loss and assessing complicated and adaptive grief with the CAGI-NA can empower providers to address grief among clients and support their efforts to cope with loss in health promoting ways.
Finally, this research has implications for mental and physical health research with AI/AN populations. Existing studies on health problems and health behavior change among AI/ANs have not included assessments of complicated and adaptive grief, despite the potential predictive validity of such a measure. This is understandable given the paucity of grief research with AI/ANs and the lack of a valid, culturally resonant instrument for use in research. However, there is great potential for researchers studying health disparities among AI/AN populations to advance the field by examining whether and how complicated and adaptive grief affect different health outcomes and behaviors, such as substance use, among Native populations. We hope that the present research is a first step toward the systematic assessment of grief in future health equity research and that the CAGI-NA proves to be a useful tool in this endeavor.
Conclusion
The current project originated from an ongoing CBPR partnership with an AI/AN reservation community. This measure development study was conducted to create a culturally resonant measure of complicated and adaptive grief that could be used in health equity research with AI/ANs, specifically to predict health behaviors such as substance use. Three mixed-methods studies resulted in a new measure of complicated and adaptive grief. The final 30-item CAGI-NA demonstrated good psychometric properties, including factor structure, internal consistency, and validity. The CAGI-NA is a potentially valuable tool for future health equity research with AI/AN people.
Footnotes
Acknowledgments
Research reported in this publication was supported by the National Institute of General Medical Sciences of the National Institutes of Health under Award Number 5P20GM104417–02. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The present manuscript includes findings in the first author’s doctoral dissertation but has not been disseminated elsewhere. The authors wish to thank the project’s Community Advisory Board and the study participants.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Research reported in this publication was supported by the National Institute of General Medical Sciences of the National Institutes of Health under Award Number 5P20GM104417–02.
Appendix
Complicated and Adaptive Grief Inventory for Native Americans
This questionnaire consists of a list of thoughts and feelings that you may have had since the loss of your loved one. Please read each statement carefully and choose the response that best describes the way you have been feeling in the
1. I blame myself for the loss of my loved one.
2. I feel that life is meaningless without the person who passed.
3. I feel resentful about my loss.
4. I feel guilty for feeling happy or living a good life after my loss.
5. I feel like the sadness or heartbreak from this loss will last forever.
6. I stopped taking care of myself since my loved one passed on.
7. I think about this person so much that it’s hard for me to do the things I normally do (e.g., keeping up with my work, school, or family responsibilities).
8. Ever since my loss, I have had a hard time caring about other people.
9. Since my loss, I have been using alcohol/drugs, food, or other behaviors to numb my feelings.
10. I have had unexplained physical symptoms since my loss (for example, pain, tightness in my chest, stomach problems, breathing difficulties, or headaches).
11. I worry that I am not grieving in the way I am supposed to.
12. I feel numb or empty, or like I don’t recognize my own emotions since my loss.
13. I feel I have lost control of my life since my loved one passed on.
14. I go out of my way to avoid reminders of the person I lost.
15. I am afraid of burdening others with my feelings of grief.
16. Since my loss, I have distanced myself (emotionally or physically) from friends and family.
17. I feel lonely a great deal of the time ever since the loss of my loved one.
18. I am struggling to make sense of the loss of my loved one.
19. I find it difficult to cope with my loss because I have not been able to mourn properly with others in my family or community.
20. I am reconnecting with my family or community since my loss.
21. I feel I can help others who are grieving without being overwhelmed by my own feelings of grief.
22. I have strengthened my relationship with the Creator or God since my loss.
23. I have found comfort in church, ceremony, or other cultural traditions since my loss.
24. Since my loss, I have become more involved and connected with my family or community.
25. I draw strength from my family and community to help me with my grief.
26. Since my loss, I have found new opportunities to help others and serve my community.
27. Remembering or talking about the person who passed brings me comfort.
28. I find peace when I communicate with my loved one who passed during prayer or ceremony.
29. I welcome visits from my loved one who passed in my dreams or visions.
30. I feel drawn to places and things that remind me of the person who passed on.
Who were you thinking of when you answered these questions (friend, parent, sibling)?
When did this person pass on (month/year)?