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Aging & Mental Health
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Rewards and unique challenges faced by African-
American custodial grandmothers: the importance of
future planning
Martha R. Crowtherab, Chao-Hui (Sylvia) Huangab & Rebecca S. Allenab
a Department of Psychology, The University of Alabama, Tuscaloosa, AL, USA
b Center for Mental Health and Aging, The University of Alabama, Tuscaloosa, AL, USA
Published online: 27 Oct 2014.
To cite this article: Martha R. Crowther, Chao-Hui (Sylvia) Huang & Rebecca S. Allen (2014): Rewards and unique
challenges faced by African-American custodial grandmothers: the importance of future planning, Aging & Mental Health,
DOI: 10.1080/13607863.2014.967175
To link to this article: http://dx.doi.org/10.1080/13607863.2014.967175
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Rewards and unique challenges faced by African-American custodial grandmothers:
the importance of future planning
Martha R. Crowther
a,b
*, Chao-Hui (Sylvia) Huang
a,b
and Rebecca S. Allen
a,b
a
Department of Psychology, The University of Alabama, Tuscaloosa, AL, USA;
b
Center for Mental Health and Aging, The University of
Alabama, Tuscaloosa, AL, USA
(Received 2 September 2014; accepted 6 September 2014)
Objectives: This exploratory study examined the context and consequences of custodial grandparenting, along with
attitudes and preferences regarding future planning among 22 African-American custodial grandmothers.
Method: A mixed-method research design was employed. Based on our integration of two theories regarding future
planning and health behavior change, caregiving, emotional distress, religiosity and spirituality, and future planning were
assessed using questionnaires along with semi-structured interviews.
Results: African-American custodial grandmothers (mean age MD53.64, SD D9.58) perceived their caregiving role as
rewarding (72%) yet challenging (86%). More than 40% reported significant emotional distress (CES-D 16) that warrants
clinical attention. Findings showed that while 64% of study participants had future plans regarding who will substitute in
their caregiving role if they become incapacitated, only 9% had completed a living will. Three major themes emerged
regarding custodial grandmothers’ caregiving role which includes: (1) rewards; (2) challenges including feeling overwhelmed
and health concerns; and (3) caregiving decisions including conflicts between ‘My plan was.../put self on-hold’ for
grandchildren and difficulty with future planning. These themes highlighted the dynamics of caregiving across time, including
current context and the ongoing process of decision-making.
Conclusion: Findings suggest that while African-American custodial grandmothers find caregiving rewarding, they face
unique challenges in contemplating and developing future plans. Custodial grandmothers think about substitute caregivers for
their grandchildren but need assistance communicating a plan focused on their own needs for future care. Culturally sensitive
interventions designed to facilitate effective utilization of future plans within this caregiver population are needed.
Keywords: religion/spirituality; cultural aspects; caregiving
Introduction
This study is one of the first to explore future planning
among custodial grandmothers using both quantitative
and qualitative methodology. With the growing number
of African-American custodial grandparents, the psycho-
social, economic, and negative health outcomes associ-
ated with caregiving, and the known disparities in end-
of-life care between racial and ethnic minority groups,
there is a need to better understand the experiences and
unique cultural and caregiving barriers to future care plan-
ning faced by custodial grandmothers. We would like to
acknowledge that future care planning is important to con-
sider for parents and other persons providing full-time
care for children; however, future planning is crucial for
custodial grandmothers given their age, health status, the
highly stressful nature of the caregiving situation, and
often lack of ‘ready’ replacement in the caregiving role.
To fill the gap in the literature, our pilot study explored
experiences and unique challenges faced by African-
American custodial grandmothers. We first describe the
context of custodial grandparenting in the United States
and then introduce two relevant theories that informed our
exploration of future care planning among this population
of caregivers.
African-American custodial grandparents: caregiving
and health outcomes
The 2010 Census data estimates that 4.9 million children
were living in grandparent headed households. This is an
increase of 400,000 children since 2000. Of that number,
2.5 million are custodial grandparents (US Census Bureau,
2010). The trend in custodial grandparents/grandparent
caregivers is overall more common among African-
Americans and Hispanics than whites. Custodial grandpar-
ents are more likely to be female, poor, and to live in the
South (Hayslip & Patrick, 2006). However, since the
recession began in 2007, the number of custodial grandpar-
ents rose 9% among whites, compared to 2% among blacks
and no change among Hispanics (US Census Bureau,
2010).
Responsibility of raising a grandchild has been found to
coincide with decreased physical health and emotional
well-being (Crowther & Rodriguez, 2003). Approximately
one-third of custodial grandparents were found to experi-
ence heightened health problems since assuming full-time
caregiving responsibilities for their grandchildren (Waldrop
& Weber, 2005). Findings from Fuller-Thomson and
Minkler (2000)’s study showed that custodial grandmothers
were more likely than their non-custodial counterparts to
*Corresponding author. Email: mrcrowther@ua.edu
Ó2014 Taylor & Francis
Aging & Mental Health, 2014
http://dx.doi.org/10.1080/13607863.2014.967175
Downloaded by [Rebecca Allen] at 14:27 30 October 2014
report higher levels of depressive symptomatology. Many
older custodial grandparents reported that they felt unpre-
pared and overwhelmed by the caregiving responsibility
given that they usually take on the caregiving role after dis-
ruptive family events such as incarceration or death of
adult children due to acquired immune deficiency syn-
drome (HIV/AIDS) or addiction (Hayslip & Patrick, 2006).
Multiple studies revealed that custodial grandparents often
express feelings of shame, guilt, anxiety, anger, and resent-
ment as a result of assuming an unexpected role (Kelley &
Whitley, 2003; Minkler & Fuller-Thomson, 2005; Smith &
Dannison, 1999).
Theories pertinent to custodial grandparenting:
uncertainty as a barrier to advance care planning and
the Transtheoretical Model for Health Behavior Change
Two theoretical models were used to guide our conceptual
understanding of future care plans among African-Ameri-
can custodial grandparents. The first model titled, ‘The
Uncertainty in Advance Care Planning for African Ameri-
cans’ developed by Melhado and Bushy (2011), attempts
to explain, describe, and predict future care decision-mak-
ing while taking cultural, spiritual, and familial as well as
sociodemographic characteristics into account. Prior
research reveals two aspects of Melhado and Bushy’s
(2011) theory as particularly relevant to future care deci-
sion-making among African-American grandparents:
stimuli or context and cultural influences. For example,
Anderson and Turner (2010) assessed preferences regard-
ing future care among African-American family care-
givers and found that there is a deep concern about the
possibility that no other family members would replace
them in their caregiving role (e.g., ‘outcome very difficult
to predict’). Additionally, these family caregivers have
worries about ‘having no one left to provide care for me
when I am in need’ (Anderson & Turner, 2010). African-
American caregivers also expressed a strong desire of not
wanting to ‘burden others’ when they are in need of care
(Nath, Hirschman, Lewis, & Strumpf, 2008).
Strong research evidence supports the role of cultural
influences, particularly religiosity and spirituality, among
African-Americans during future care planning. African-
Americans tend to rely on their faith in God as central to
medical decision-making, believing ultimately that God
controls the end-of-life (Nath et al., 2008; Waters, 2001).
Crawley et al. (2000) proposed that African-Americans
may not opt for palliative care due to their values about
enduring pain and suffering that conflict with their spiritual
view of death and the goals of palliative care (i.e., relieving
physical pain). In support of this notion, True et al. (2005)
found that cancer patients who rated high on measures of
religiosity/spirituality were less likely to have a living will
and more likely to opt for life-sustaining treatments,
and more African-Americans than non-Hispanic whites
reported using religious/spiritual coping for their cancer.
The second model, Transtheoretical Model (TTM) for
Health Behavior Change formulated by Prochaska and Di
Clemente (1992), includes five stages of change experi-
enced by individuals across time when considering health
behaviors: precontemplation, contemplation, preparation,
action, and maintenance. Advance care planning has been
conceptualized as a set of preventive health behaviors
(Allen, Phillips, Pekmezi, Crowther, & Prentice-Dunn,
2009; Bullock, 2011; Song et al., 2009); thus, the experi-
ence of custodial grandparents as they consider need for
future care may coincide with at least some of the stages
of the TTM. It is therefore important to address future
planning among this group of caregivers and how it
relates to the TTM stages given the reported impact of
caregiving on their health and well-being along with their
sociodemographic profile. Prior research would suggest
that African-American custodial grandmothers most typi-
cally remain in the precontemplation and contemplation
stages without making preparations or taking actions such
as executing an advance directive in planning for their
own future medical care (e.g., Allen et al., 2009; Bullock,
2011; Song et al., 2009). By integrating both models, we
were able to examine African-American custodial care-
givers’ readiness for future care planning across time.
Need for study
With the rapid increase in the number of African-American
custodial grandparents (US Census Bureau, 2012;Pew
Research Center, 2010), the decreased emotional health
outcomes associated with caregiving and the known dispar-
ities in end-of-life care between racial and ethnic minority
groups (Krakauer, Crenner, & Fox, 2002), there is a need
to understand the experiences and unique challenges faced
by African-American custodial grandparent caregivers and
develop effective strategies that can better enable them to
engage in future health care planning. It is our belief that
the unique context of custodial grandparents (e.g., raising
children) may motivate this special population to move
from uncertainty/precontemplation to more active stages of
health behavior change in planning for future care when
given information and resources. In an attempt to better
understand future planning process and needs among this
group of African-American caregivers, this study used a
mixed-method design to explore experiences and unique
cultural, spiritual, and caregiving related challenges among
African-American custodial grandmothers.
Methods
Participants
Twenty-two African-American custodial grandmothers
participated in this exploratory study. Recruitment meth-
ods included fliers distributed at community organizations
along with community professionals identifying potential
participants. To be eligible for the study, the participant
needed to meet the following inclusion criteria: (1) serve
as primary caregiver for at least one child aged 18 or
younger who was not their biological child; (2) serve in
the role of primary caregiver for at least six months; and
(3) have a score of 25 or higher on the Mini-Mental Status
Examination. All interested individuals were screened
to ensure eligibility, and if eligible, then scheduled an
2M.R. Crowther et al.
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appointment at an agreed upon neutral location that was
convenient to the participant, safe for the interviewer, and
allowed for confidential discussion.
Measures
Sociodemographics
Sociodemographic information was obtained during the
semi-structured interview to assess participants’ back-
ground characteristics such as age, sex, education, marital
status, employment status, religious preference, and the
number of grandchildren under care.
Depression
Depressive symptoms were assessed by the 20-item Cen-
ter for Epidemiologic Studies Depression Scale (CES-D;
Radloff, 1977). The scale assessed four components of
depressive symptomatology: dysthymic affect, the lack of
positive affect, somatic and retarded activity difficulties,
and interpersonal difficulties. Each question was rated on
a 4-point scale ranging from rarely, none of the time (0) to
most or all of the time (3). The highest possible total score
was 60, with higher scores more indicative of depressive
symptoms. A cut-off score of 16 indicated a significant
level of psychological distress. According to Radloff
(1977), the CES-D scale has good internal consistency,
with a Cronbach alpha coefficient of .84.85 in White
community samples and .90 in clinical samples. This
study has a satisfactory Cronbach alpha coefficient of .87.
Religiosity/Spirituality
Participant’s religiosity/spirituality was assessed using
items drawn from the overall self-ranking subscale of the
Brief Multidimensional Measure of Religiosity/Spirituality
(Fetzer Group/National Institute on Aging Working Group,
1999). This subscale includes two items: ‘To what extent
do you consider yourself a religious person?’ and ‘To what
extent do you consider yourself a spiritual person?’ which
were rated on a four-point Likert scale ranging from ‘Not
religious/spiritual at all’ (1) to ‘Very religious/spiritual’
(4). Fetzer Group/National Institute on Aging Working
Group (1999) reported the reliability coefficient of the
overall self-ranking subscales of .77. In the current sample,
the reliability coefficient of this subscale is .64.
Future planning
Participants’ possession of future health care plans was
measured using the following questions assessing whether
custodial grandmothers have: (1) designated a substitute
for future caregiving responsibilities in case they are no
longer able to assume the caregiving role; (2) completed a
living will and designated a proxy for medical decision-
making; (3) discussed their wishes for medical care with
their physicians or pastors/clergy; (4) made funeral plans;
and (5) discussed any concerns they have regarding con-
templating or developing an advance care plan for them-
selves. All questions were coded as ‘yes’ (1) or ‘no’ (0).
Caregiving
Participants’ experiences and concerns regarding custo-
dial caregiving were assessed using a semi-structured
interview. Sample questions include: ‘What is the most
rewarding aspect of being a Custodial grandparent for
you?’ ‘What is the most difficult part of being a Custodial
grandparent for you?’ ‘What sorts of things have changed
for you since you first became a custodial grandparent?’
Data analyses
A mixed-method approach (Lincoln & Guba, 1985) was
employed in this study. Quantitative analyses were con-
ducted using statistical package for the social sciences
(SPSS; version 22) to assess participants’ background
characteristics, religiosity, spirituality, caregiving plan,
and advance care plans. NVIVO 10 software was used in
qualitative coding of transcripts. Data from the audio
recordings were transcribed verbatim by a professional
transcriptionist. To ensure accuracy, the transcripts were
spot-checked based on recommendations proposed by
MacLean, Meyer, and Estable (2004). Narratives were
analyzed using the descriptive and thematic analysis
approaches (Sandelowski, 2000). According to Sandelow-
ski (2000), qualitative description is the method of choice
when straight descriptions of phenomena are desired
within a new and exploratory line of inquiry. Thus, the
scientific goal was to stay close to the data and to the par-
ticipants’ own words and description of events.
Best standards of qualitative methodology that support
validity are rigor, trustworthiness and an awareness
of reflexivity, credibility, and believability (Russell &
Gregory, 2003). In this study, we increased the trustworthi-
ness of our findings by directly examining reflexivity, or
what the coder brings to the coding of qualitative data,
through the use of investigator triangulation. A two-mem-
ber analysis team with experience and expertise in qualita-
tive methodology (e.g., Chao-Hui (Sylvia) Huang and
Rebecca S. Allen) independently analyzed transcripts and
developed themes. This investigator triangulation or peer
review helped to keep investigators’ interpretations in
check and supported basic awareness of potential bias
while facilitating solid evidence for the interpretation of
thedata(Thorpe&Holt,2007). Each transcript was read
independently while initial themes and subcategories in the
text were identified. Thematic content analysis (TCA;
Flick, 2009; Lincoln & Guba, 1985) was then employed to
establish major themes at regularly scheduled research
meetings, wherein new themes and refinements to identi-
fied ones were considered by the coding team. Discrepan-
cies were infrequent but, when they occurred, were
discussed with the first author. In addition, the analysis
team kept detailed notes as part of an audit trail, document-
ing each and every step of the research process to help doc-
ument analytic decisions (Bradley, Curry, & Kelly, 2007).
Results
Background characteristics
Background characteristics of the study participants are
summarized in Table 1. The mean age of the sample was
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54 (SD D9.58; range 4275). Half of the participants
were married, while 27.27% were divorced, and 22.73%
were widowed. The majority of the participants (63.64%)
completed some college, while another 22.73% did not
finish high school. Approximately 55% of the custodial
grandmothers provide care for 12 grandchildren, while
another 45% provide care for four or more grandchildren.
Almost half of the participants worked to meet financial
needs, 30% of them were retired and 20% were home-
makers. It is worth noting that while 86% of the partici-
pants reported that they receive pleasure from caregiving;
72% of them also reported that caregiving was challeng-
ing. More than 40% of the custodial grandmothers
reported a significant level of distress (CED-S >16).
Preferences for advance care plan and experiences
with end-of-life care
Participant’s preferences regarding advance care planning
and experiences with end-of-life care are summarized in
Table 2. Results showed that 63.64% of the custodial
grandmothers have thought about who could replace them
as caregivers. More than 60% of the participants reported
concerns about the possibility that no other family mem-
bers would replace them in their role once they could no
longer perform their caregiving duties.
While the custodial grandmothers have worried about
who will replace them as caregivers if needed they have
not thought about who will provide care for them.
Twenty-seven percent of the participants indicated that
they have plans in place for their funeral and 50%
reported having a burial plan. However, only 9.10% of the
participants have a living will and even fewer have
appointed a healthcare proxy (5.45%). It is worth noting
that almost 70% of the custodial grandmothers reported
providing approximately 51.62 hours of care to someone
at the end of their life. Additionally, 64% reported know-
ing someone receiving hospice and 60% reported a posi-
tive view of the quality of hospice care; however, less
than 20% had discussed their end-of-life plans with a phy-
sician. While 95% of the participants reported being a
Table 1. Background characteristics of African-American
custodial grandmothers.
Characteristics % or M§SD
Age (range: 4275) 53.64 §9.58
<45 21.74
4655 47.83
5564 13.04
>65 17.40
Marital status
Married 50.00
Divorced 27.27
Widowed 22.73
Educational attainment
<high school 22.73
High school graduate 13.64
some college 63.64
Employment
Employed 45.45
Retired 27.27
Homemaker 18.18
Religious preference
Christianity 95.00
No preference 5.00
Number of Grandchildren under Care 4.27 §3.25
<3 54.55
46 27.27
>6 18.18
Caregiving experiences
Rewarding 72.00
Challenging 86.00
CES-D Score 15.73 §10.44
High level of distress (CES-D 16) 40.91
Table 2. Custodial caregivers’ preferences and experiences
with future planning.
Categories % or M§SD
Advance care plan in place
Do you have a living will? 9.10
Have you talked about your wishes
regarding medical care with a physician?
18.18
Have you chosen a proxy to make medical
decisions for you when unable to?
5.45
Have you made plans regarding who will
care for grandchildren when unable to?
63.64
Designated caregiver for taking over when
unable to
Grandchild’s parents 22.73
Daughter 18.18
Other family members (ex., sister, husband,
and son)
18.18
Family friends 4.55
Funeral plans in place
Have you made plans for your funeral? 27.27
Do you have a cemetery plot? 50.00
Caregiver experiences with end-of-life care
Have you ever provided care to someone at
the end of their life?
68.18
How many hours per week did you spend
providing EOL care?
51.62 §55.28
Were hospice services involved in EOL
care?
18.18
Were life sustaining medical treatments in
place when care recipient died?
13.64
Have you known anyone receiving hospice
care?
59.09
Views on the quality of care provided by
hospital
Excellent 31.82
Good 22.73
Poor 4.55
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Christian and spent an average of 6.2 hours in church-
related activities, none of them had shared their thoughts
about advance care plans with their pastors or church
members.
Associations between religiosity, spirituality, caregiving
plan, and advance care plans
Table 3 presents the correlation between religiosity, spiri-
tuality, caregiving plan, and advance care plans. Results
revealed that caregivers who self-reported as a religious
and/or a spiritual person were more likely to assign a
substitute caregiver when they are unable to provide care-
giving (rD.56, p<0.5). However, no significant correla-
tions were found between caregiver’s self-reported
religiosity/spirituality and advance care plans such as hav-
ing a living will in place and appointing a health care
proxy when they are no longer able to make health care
decisions for themselves.
Qualitative findings: themes emerging from
semi-structured interviews
Three major themes emerged regarding custodial grand-
mothers’ experience of the caregiving role including (1)
rewards; (2) challenges; and (3) caregiving decisions. The
model arising from these themes and subthemes is illus-
trated in Figure 1, clearly integrating constructs from the
Uncertainty in Advance Care Planning and the TTM. Two
subthemes were identified from ‘challenges,’ including
Table 3. Point-biserial correlation between religiosity/spirituality, caregiving plan, and advance care plans.
Caregiving plan Advance care plans
Religiosity/Spirituality Substitute caregiver Living will Health care proxy
Consider self as religious/spiritual .56
.16 .20
Note: Correlation is significant at the 0.05 level (2-tailed),
p<.05.
Figure 1. Simulacrum of major themes and subthemes emerged from semi-structured interview: impact of caregiving on future
planning from the onset of custodial caregiving through current and future time.
Aging & Mental Health 5
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(2a) feeling overwhelmed with caregiving responsibili-
ties; and (2b) health concerns/‘I got old.’ Two subthemes
also were identified from ‘caregiving decisions,’ including
(3a) put own plans on hold for grandchildren; and (3b) dif-
ficulty with future planning (see Table 4). These themes
highlighted the dynamic relationship between caregiving
and thinking about the contrast between current context
and the expected future.
Rewards or gains in raising grandchildren were the
most frequent theme expressed by African-American cus-
todial grandmothers. Several women expressed joy from
mutual exchanges of affection or the opportunity to spend
quality time. One stated that her favorite part of being a
custodial grandmother was ‘the hugs and kisses I get and
the “I love you.”’ Another expressed joy in the ability
‘Just to be around them...watch them grow up.’ Some
grandmothers elaborated on activities that helped to create
quality time. One grandparent stated, ‘It is rewarding to
give them advice and them be able to call me big mama.
It is rewarding to help raise them the right way.’ These
generative activities could include imparting wisdom or
life lessons, sharing family stories or cooking:
Well now I just enjoy them. When they are happy. I love my
grandkids all of them. They are just so good to me... Itell
them to respect people and they can get respect. I tell them
make good of schools and I could have done a lot better in
school. ... sometimes I tell them how different things
happen in the past they never did know their granddad. I tell
them about my mom and dad and a lot of things and some-
times I let them help me cook. Like on different holidays.
These rewards were expressed within the context of
several challenges encountered in the experience of being
a custodial grandparent. Another stated, ‘He (grandson)
was exposed to drugs; on drugs. At first I did not want it
(the challenge), but after it was a reward.’ The challenge
subtheme of feeling overwhelmed encompassed objective
stressors such as lack of financial resources or the need to
transport the grandchild to multiple locations while per-
forming everyday tasks as well as resentment toward the
missing parent. One custodial grandparent stated, ‘Well,
being a grandparent had limited my financial part because
I’m always buying for them. It keeps me broke.’ Another
mentioned cultural influences (see Figure 1), relating her
feelings about the missing parent and directly stating that
she felt overwhelmed, ‘I took over responsibility because
the parent wasn’t doing what they were supposed to do.
But I feel like they (i.e., grandchildren) should be with
their parents and it is overwhelming.’
A second challenge subtheme was related to health
concerns (see Figure 1). One custodial grandmother stated
simply, ‘I got old.’ Aging was identified as interfering
with the ability to participate in activities with the grand-
children, and such ‘quality time’ was clearly identified by
some custodial grandmothers as a positive aspect of the
experience (theme 1). One woman stated, ‘Sometimes I
don’t always go with them to different things I let them
go alone or go with someone else. But if I was young and
see I would go with them a lot more.’ Notions about aging
were linked with health concerns, similar to the stimuli
aspect of the Uncertainty in Advance Care Planning
Table 4. Major themes and subthemes emerged from semi-structured interview using thematic content analysis (TCA).
Major themes Subthemes Statements
(1) Rewards (1a) Enjoy having grandchildren
around
‘Well her here with me (is the most rewarding aspect of being a custodial
grandparent)...She’s a good child. She good in school.’ [Participant #6]
‘Well now I just enjoy them. When they are happy. I love my grandkids all of them.
They are just so good to me...’ [Participant #11]
(2) Challenges (2a) Feeling overwhelmed with
caregiving responsibilities
‘I took over responsibility because the parent wasn’t doing what they were
supposed to do. But I feel like they (i.e., grandchildren) should be with their
parents and it is overwhelming.’ [Participant #1]
‘I do not feel good because it a lot of stress for me. It’s a lot of work and mentally
and physically my health is under stress.’ [Participant #14]
(2b) Health concerns/‘I got old’ ‘You know even though I feel like maybe I’m too old and I feel like the boys need
their dad and they need their mom. Maybe she could do those things with them.
Sometimes I don’t always go with them to different things I let them go alone or
go with someone else. But if I was young and see I would go with them a lot
more.’ [Participant #4]
‘I worry about nothing except my age, health has changed, started breaking down.’
[Participant #9]
(3) Caregiving
decisions
(3a) ‘My plan was...’/put self
on hold for grandchildren
‘Well, I put a lot (of) things I want to do on hold. I would like to do art and my plan
was to do festivals and stuff like but couldn’t do that I had to just every day I
could make things but I’m not I don’t have the time or energy to pursue that. It’s
just on hold.’ [Participant #1]
‘Well, I have less time for individual pursuits, continuing education, working,
helping out what I need to do with my aging mother.’ [Participant #19]
(3b) Difficulty with future
decision-making/planning
‘The most difficult part of being a grandparent for me is making decisions for the
future.’ [Participant #18]
‘I can’t make (future) plans for myself now. When I plan, it’s for her (grandchild),
not for me. The part of my life I was waiting for, I no longer have it.’ [Participant
#15]
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model (see Figure 1). African-American custodial grand-
mothers expressed that they have been worried that their
health condition may compromise their capacity to pro-
vide quality caregiving for their grandchildren. For exam-
ple, one participant reported that ‘I am worried about my
health, not able to do what I am able to do (i.e., caregiving
for grandchildren).’ Another participant voiced that her
primary worry for her caregiving duty was expected
health decline: ‘I worry about nothing except my age,
health has changed, started breaking down.’
The third theme that arose in qualitative semi-struc-
tured interviews was caregiving decisions (see Table 4
and Figure 1), reflecting the dynamic choices custodial
grandmothers make across time and reflecting more
closely constructs within the TTM. Two subthemes were
evident within this general theme: (1) ‘My plan was.../
...put self on hold’ and (2) difficulty with future planning.
Custodial grandmothers tend to ‘put self on hold’ as they
are usually wrapped up with daily caregiving responsibili-
ties. One participant reported that ‘Well, I put a lot (of)
things I want to do on hold.’ Another stated, ‘Well, less
time for individual pursuits, continuing education, work-
ing, helping out what I need to do with my aging mother.’
These comments and that of other custodial grandmothers
reflect the continuing choices and decisions they make
about the difference between their desired or expected
future and the realities of being a grandparent raising a
grandchild. One woman discussed her desire to pursue art,
‘my plan was to do festivals and stuff like but couldn’t do
that I had to just every day I could make things but I’m
not I don’t have the time or energy to pursue that.’
Another woman described her desire to travel and the lim-
itations custodial grandparenting placed on that desire:
I can’t travel as much. Its limited life, social activities to a
certain extent I can’t travel as much as I want to cause I
always got to take them considering they are in school.
See with them I could travel any day I wanted to but I
can’t do it now it has limited that a lot of things I do.
Occasionally the mismatch between ‘my plan was’
and realities of custodial grandparenting was linked back
to age. One grandmother stated, ‘at my age I want to be
enjoying my own life and not have a grandchild that’s
why I didn’t plan on keeping him forever.’ The variability
in the custodial grandparenting experience was expressed
by a relatively young grandmother, ‘it took me to do so
spiritual soul searching and finally I was 34 or 35 you
know I’m young enough to bear my own children.’
Another grandmother talked about having already passed
through the stage of parenting only to return to it as a cus-
todial grandparent:
I raised my children and now I’m raising another genera-
tion which I didn’t planned in for my life. So it changed
my life. It changed me from doing the things that I would
like to do in my life but now I have to worry about him.
A second minor subtheme arose within caregiving
decisions: difficulties encountered with future decision-
making (see Table 4 and Figure 1). One participant noted
that one of the most difficult parts of being a custodial
grandparent is ‘making decisions for the future.’ Another
grandmother echoed this concern and reported that ‘I
can’t make (future care) plans for myself now. When I
plan, it’s for her (grandchild), not for me. The part of my
life I was waiting for, I no longer have it.’ Again, these
comments reflect ongoing decisions and resolution of dis-
crepancies in planning for health behavior change across
time within the unique context of custodial grandparent-
ing. Issues and needs of the grandchild or grandchildren
are prioritized while the needs, desires, and plans of the
grandmother are ‘on hold.’
Discussion
This mixed-method study extends prior research by
directly inquiring about specific thoughts and actions
taken to prepare for future care needs within the unique
context of custodial grandparenting. The model arising
from integration of our findings and two foundational the-
ories is illustrated in Figure 1. One of the most important
study findings indicates that caregiving decisions rou-
tinely reflect the unique challenge of providing care for ‘a
skipped generation’ (Smith & Dannison, 1999), and that
this makes future planning particularly difficult for
African-American custodial grandparents (see Figure 1).
Similar to prior research, our study participants conveyed
both a high level of caregiving rewards and burden.
The custodial grandparents discussed caregiving
rewards that included love, sense of belonging, a second
chance at parenting, providing the provision of socializa-
tion strategies necessary for survival, and learning new
skills such as computer literacy. A theme of generativity
or passing down wisdom to a new generation emerged.
Moreover, the dynamics of ongoing decision-making within
the context of custodial grandparenting was reflected; in
that some grandmothers expressed a change of heart across
the course of caregiving for a grandchild, finding rewards
in caregiving even within the context of a grandchild’s prior
drug use.
The unique context of custodial grandparent caregiv-
ing left little time or cognitive resources to attend to mov-
ing forward with health behavior change as reflected in
the TTM and applied to advance care planning (Figure 1).
Custodial grandmothers largely did not attend to their
own emotional needs, think ahead about preferences for
their future health care needs, or discuss their own future
care preferences with others (Moore & Sherman, 1999).
This finding is in accordance with previous research (Bull-
ock, 2011) and underscores both challenges and caregiv-
ing decisions subthemes found in the descriptive
qualitative analysis (see Figure 1): (1) ‘difficulty in deci-
sion-making’ and (2) ‘putting self on hold’ when planning
must be focused on the needs of the grandchild. Our
exploratory findings indicate that while this particular
group of caregivers expressed concerns for making deci-
sions for the future, they were most likely to stay in the
precontemplation stage (Prochaska & Velicer, 1997)in
terms of engaging in preventive health behaviors such as
developing a living will or assigning a health care proxy.
Aging & Mental Health 7
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In line with Anderson and Turner (2010), our qualita-
tive findings (see Table 4, major theme 2) reveal chal-
lenges of custodial caregiving in relation to future care
planning. Specifically, custodial grandmothers reported
having to put self on hold and concern regarding no iden-
tified substitute caregiver. Consistent with Nath et al.
(2008) about religiosity/spirituality and advance care
planning, our quantitative findings suggest that although
custodial caregivers endorsed a strong sense of religiosity/
spirituality and reliance on God in future care planning
for their grandchildren, there was no relation with advance
care planning for themselves (see Table 3).
Our findings also correspond to the Model of Uncer-
tainty in Advance Care Planning for African Americans
(Melhado & Bushy, 2011), particularly the stimuli and
cultural influences constructs. The model highlights the
importance of contextual factors which may impact the
future planning process. Specifically, this model attempts
to describe and predict end-of-life decision-making
among African-Americans by incorporating a contextual
approach while taking cultural, spiritual and historical fac-
tors, health status, and sociodemographic characteristics
into account. For example, cultural influences and family
factors may interfere with custodial grandmother’s future
planning; when they are preoccupied with primary care-
giving responsibilities, it is difficult for them to think
ahead and make plans to indicate their wishes for future
health care needs. While African-American custodial
grandmothers endorsed strong religious/spiritual beliefs
and values and many had experience with end-of-life
caregiving, these values and experiences did not increase
the likelihood that they had advance care plans for their
own end-of-life care nor had such discussions with pastors
or other clergy members. In addition to these barriers,
there may be other important factors such as health liter-
acy and issues of mistrust described in the Model of
Uncertainty that have not been addressed in this study that
may warrant further investigation to better understand the
low completion rate of advance directives among this
population of caregivers.
Given the context of custodial grandparents, our care-
givers appeared to experience difficulty transitioning from
precontemplation to more active stages of health behavior
change (see Figure 1). Yet there is reason to believe the
unique context of custodial grandparent caregiving that
may motivate health behavior change due to health con-
cerns and tendency to ‘put self on hold’ and prioritize the
needs of the grandchild (see Figure 1). A longitudinal
mixed-method approach could examine motivation for
changes among the custodial caregiver population to
identify what factors move custodial grandmothers from
precontemplation to contemplation and taking action
regarding future health care plans within the Transtheoret-
ical Model for Health Behavior Change (Prochaska & Di
Clemente, 1992). Interestingly, prior research has shown
that advance care planning discussions between older
African-Americans or whites and their adult children
moderates end-of-life treatment preference agreement
(Schmid, Allen, Haley, & DeCoster, 2010). Although
African-American dyads display higher treatment
preference agreement regarding end-of-life care overall,
fewer advance care planning discussions predicted under-
treatment errors on the part of African-American dyads
and overtreatment errors on the part of white dyads
(Schmid et al., 2010). Interventions aimed at assisting
African-American custodial grandmothers in discussing
their treatment wishes and naming health care proxies,
perhaps through discussions with clergy, could build upon
the cultural strength of higher treatment preference agree-
ment and reduce the possibility of undertreatment errors
and the sense of burden experienced when considering
one’s own potential future care needs (see Figure 1).
Study limitations: we acknowledge several limitations
of this pilot study, including the relatively small sample
size and geographic specificity of the sample. This
reduced heterogeneity in some constructs of interest, lim-
iting generalizability of the findings. The complex nature
of the relation between caregiving and future plans lends
itself to further qualitative methods of inquiry such as
grounded theory or phenomenological design.
In spite of these limitations, our study is one of the first
to address issues regarding both the rewards of caregiving
and unique challenges of planning for the future faced by
African-American custodial grandmothers. Our findings
can inform future intervention efforts (Sandelowski &
Leeman, 2012). For instance, Song et al. (2009)usethe
power of religious/spiritual beliefs in illness representation
and advance care planning discussions; this could be
adapted to the specific needs of African-American custo-
dial grandmothers to motivate contemplation of future
health care plans. Additionally, suitable interventions may
focus on education about the purpose of advance directives
and the importance of having treatment wishes communi-
cated in writing (Bailey et al., 2012;Tenoetal.,1997).
Moreover,aninterventionstrategytoimprovecommunica-
tion with physicians, clergy, and mental health professio-
nals may support diverse cultural definitions for the
meaning of quality of life and motivate contemplation and
action toward making future health care plans.
Acknowledgements
This information was previously presented at the Gerontological
Society of America meeting, November 2010.
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