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STAY ALIVE, BE HAPPY: THE LIVED EXPERIENCES OF

FAMILY CAREGIVERS OF PATIENTS WITH TYPE 2 DIABETES MELLITUS


Trixia Marie M. Ayala, RN, Adrienne Francine C. Buenaflor, RN, Clarizze D. Dailisan, RND, Reynaflor G. Esmas, RN,
Fitz Gerald V. Jaminit, RN, CNN, MAN, Melanie Faye D. Marquez, RND, Jessica B. Pajalla, RND
PADE-ADNEP DIABETES EDUCATION TRAININGMARIKINA 2014

INTRODUCTION
Diabetes Mellitus (DM) is a worldwide concern causing millions and
millions of death. The International Diabetes Federation (IDF, 2013) says
that there are about 382 Million people living with the disease, and 138
Million is coming from the western pacific region where the Philippines
belong. DM is considered as a family disease for it does not only affect
the patient but their family process and relationship itself. Family
caregivers play a critical role in a diabetics health and long term care
system by providing a significant proportion of the care for both the
chronically ill and aging (American Psychological Association, nd). While
caregiving can be rewarding and positive, many family caregivers
experience significant physical, psychological, and financial stressors in
association with their caregiving role. Thus, study is done to have an indepth understanding of the experiences of family caregivers of patients
with Type 2 Diabetes Mellitus (T2DM).

Theme 3: Gaining Deeper Relationship was among the themes that


emerged from having closer family ties and unconditional love. It
describes the emotional impact of Diabetes Mellitus upon families.
Diabetes as a family disease affects more people than just the person
who is diagnosed. As the patient is required to change old routines (and
adapt new ones) across a wide variety of areas in his or her life,
significant adjustments by all of those close to the patient are also
necessary in order to ensure good disease management and physical
health (American Association for Marriage and Family Therapy, nd). It
describes the effect on their relationships as numerous adjustments the
family caregiver needs to make.
THEME 3

SUBTHEMES

Gaining deeper Closer family ties


relationship

CATEGORIES

Unconditional love

METHODOLOGY

The study used the qualitative research method, specifically descriptive


phenomenology. This type of qualitative research gathers rich data
about experiences, motivations, beliefs and mental and social dynamics
(Healey, M., 2015). Seven participants were involved in the study who
shared their experiences through a one-on-one, in-depth, recorded
interview. Participants were family members living with patients with
T2DM and have been taking care of them for more than five years; six
were female and one male. Data generation ran together with its
analysis until the data collected were already thick and can describe
what it really means to be the caregiver of a family member diagnosed
with T2DM.

RESULTS AND DISCUSIONS


The following themes emerged from the analysis of data.
THEME 1
SUBTHEMES
Being a constant Being present all the
companion
time

A giver of reminders

Less time for self

CATEGORIES
Joining during meals
Company on check-ups
Attendance to medical follow
ups
Medication compliance
Promotion of healthy food
choices
Doing personal enjoyments

Theme 1: Being a constant companion describes the role of the unfailing


presence and companionship of the participants as a pillar in helping
their patients manage the disease better. The constant presence of the
caregiver was necessary most especially to assure that the patients have
continuous support in fighting diabetes. The subthemes being present
all the time, giver of reminders, and less time for self were further
withdrawn.

THEME 2
SUBTHEMES
Hurdling multiple Addressing financial
challenges
burden of DM

Settling
disagreements
Confronting

CATEGORIES
Seeking resources need for financial help
Absence of other financial support
Budget constraints
Disagreements about care
Fear of future DM outcomes

apprehensions

Apprehensions on patients
well-being

Doubts of capability to provide


care
Use of alternative treatment

Managing patients
diabetes

THEME 4
Needs as a caregiver

SUBTHEMES
Reprieve
Support from family
Be understood by
patient

Understand needs of each family


member
Collaborative responsibilities to
care
Patient-centered vs. selfcentered
Giving-in

CATEGORIES
Feeling exhaustion

Family environment

Appreciate sacrifices

Theme 4: Needs as a caregiver. As a caregiver for an ailing loved one,


one takes on responsibilities some which are intimidating and unfamiliar.
The needs of a caregiver usually go unnoticed since they are not the
main recipient of care. There is very little or no assessment done on their
well-being, problems nor concerns while providing care to their loved
ones. There are times when one feels overwhelmed, alone and
frustrated due to the burden of having to adapt to a multitude of
changes. Feelings of anxiety, anger, guilt and grief are just some of the
emotions that a caregiver experiences while providing care. Since not all
participants have medical backgrounds, they become resentful of
themselves thinking about their shortcomings and misgivings. Beating
self-up just to maintain a positive connection with their ailing loved one
in promoting health is part of their experience.
THEME 5
SUBTHEMES
Adapting to
Beginning struggles
needed changes
Being patient
Modifying lifestyle
Having positive outlook

CATEGORIES
Acceptance of future with diabetes
Dealing with bad moods
Adapting healthier food choices
Impetrate better disease outcome

Theme 5: Adapting to needed changes. As the famous adage goes


change is the only constant thing in the world, this applies to diabetes
management as well; a lot of things may change when one in the family
has diabetes, and it is not limited to changes in budget allocations,
changes in food choices, and changes in daily routines but as well as
changes in the family processes and relationships.

CONCLUSIONS AND RECOMMENDATIONS


Caring for a family member with Type 2 Diabetes Mellitus is very
demanding. Tremendous amount of challenges is faced and adjustments
are made by the caregiver leaving limited amount of time to attend to
personal needs. The patient and their needs are always the focus of the
caregiving, but there it is also important to recognize that the caregiver
likewise has needs to be met. In this light, it is therefore recommended
the creation of a support group for caregivers with a counselor that
would serve as a venue to ventilate their concerns, development of an
educational program for caregivers of patients with diabetes on
diabetes care and management by diabetes educators, and a family
counseling session to facilitate adjustment of the family to the demands
of diabetes management.

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Theme 2: Hurdling Multiple Challenges were among the inevitable
predicaments the family members and caregivers of DM patients endure
in a day-to-day basis. It describes the struggles the participants have to
deal with which they withstand steadfastly. Diabetes affects everyone,
everywhere, which poses great impact on the lives of patients and their
families. As the cost of diabetes care is high and increasing worldwide,
addressing the financial burden of DM is a struggle all participants have to
live through along with settling disagreements, confronting
apprehensions and the challenge of the managing the diabetes of their
patients.

REFERENCES
American Association for Marriage and Family Therapy Inc (nd),
retrieved on July 2015 from http://aamfti.org/
American Psychological Association (nd), Family Caregiving, retrieved,
August 9, 2015, from http://www.apa.org/about/gr/issues/cyf/
caregiving-facts.aspx
International Diabetes Federation (2013), IDF Facts and Figures, retrieved
from www.idf.org/worlddiabetesday/toolkit/gp/facts-figures
Healey, M. (2015), Tools for Qualitative Research, eHow, retrieved on
January 2015 from http://www.ehow.com/info_8036314_toolsqualitative-research.html