Caregivers’ Experiences in Providing Self-Care Needs of Elderly with

Rheumatoid Arthritis: A Phenomenology Study in Aceh, Indonesia

Iskandar

1,2

, Hajjul Kamil

, Endang Mutiawati

, and Suryane Sulistiana Susanti

Master Program of Nursing Science, Faculty of Nursing, Syiah Kuala University, Banda Aceh, Indonesia

School of Nursing, Faculty of Medicine, Abulyatama University, Banda Aceh, Indonesia

Department of Nursing Management, Faculty of Nursing, Syiah Kuala University, Banda Aceh, Indonesia

Nueroscience Department, Faculty of Medicine, Syiah Kuala University, Banda Aceh, Indonesia

Department of Family Nursing, Faculty of Nursing, Syiah Kuala University, Banda Aceh, Indonesia,

Keywords: Caregiver, Elderly, Self Care, Rheumatoid Arthritis, Phenomenology Study

Abstract: Providing a self-care need of the elderly with Rheumatoid Arthritis is a primarily complex activity

conducted by the caregivers. Varied responses from elderly with rheumatoid arthritis also required different

responses in providing self-care needs. This study aims to explore experiences of caregivers in providing

self-care needs of elderly with Rheumatoid Arthritis at Social Welfare Institution in Aceh, Indonesia. This

qualitative study employed transcendental phenomenology design, and involved eight caregivers of elderly

with Rheumatoid Arthritis. The data collected in the form of interviews and field notes and analyzed by

using Miles and Huberman techniques. This study identified four themes: 1) respond to elderly changes; 2)

universal self-care fulfillment; 3) self-care development fulfillment; and 4) self-care fulfillment in unhealthy

condition. These findings show the conditions that must be considered by the caregivers in providing self-

care needs of elderly with rheumatoid arthritis. This study suggested on preventing the risk of mistreatment

of elderly by improving the caregivers’ knowledge and skill in providing caring to elderly with chronic

diseases, especially Rheumatoid Arthritis.

1 INTRODUCTION

Caregivers are individuals who give attention and

care directly to other individuals both children and

adults. The role of caregivers is assistance in self-

care, mobility, performing nursing tasks and

carrying out household tasks (Friedman, 2010;

Arksey, et al, 2005).

A self–care nursing theorist, Dorothea Orem

(2001) mentioned that there are some self-care needs

or self-care requisite that can be linked to the needs

of the elderly that must be cared for by the

caregivers, namely (1) universal self-care needs, (2)

self-care development needs, and (3) self-care needs

in conditions of health irregularities. Moreover,

Maryam, et al., (2012), explained that the most

contributed factor to the burden of caring in health is

the health status. Novak and Guest (1989) in Gallo

et al (2006) explained that caregiver’s burden is a

multidimensional measure that measures five

domains, including time, development, physical,

social and emotional domains. Allowing the burden

to occur will tend to be risky and susceptible to the

emergence of stress on caregivers and will have an

impact on the elderly.

The World Health Organization (WHO)

estimates that by 2020 the number of elderly people

will reach 28.800.000 (11.34%) of the total

population. The estimated number of elderly people

over 65 years of age in Indonesia is 12.740.265

(5.4%) of the total population of Indonesia

(Indonesian Ministry of Health, 2014). Moreover, in

the province of Aceh in 2015 there were 25.553

(0.57%) of the total population of Aceh, and the

elderly under the care of Aceh Provincial Social

Welfare Department are 1062 people (Aceh

Provincial Social Service, 2016). Indonesian

Ministry of Health (2016) started that medical

aspects become one of the problems with the

increasing number of elderly people. According to

the 2013 Indonesian Basic Health Research

(RISKESDAS) data, the prevalence of joint disease

Iskandar, ., Kamil, H., Mutiawati, E. and Susanti, S.

Caregivers’ Experiences in Providing Self-Care Needs of Elderly with Rheumatoid Arthritis: A Phenomenology Study in Aceh, Indonesia.

DOI: 10.5220/0008395300002442

In Proceedings of the Aceh International Nursing Conference (AINC 2018), pages 119-124

ISBN: 978-989-758-413-8

119

in elderly is 11.9% and the tendency of joint

disease/rheumatoid arthritis/gout (24.7%). Whilst in

Aceh the prevalence of rheumatoid arthritis (18.3%),

where in Banda Aceh alone has reached 8.484 cases.

Several studies explained the experience of

caregivers who provide care for the patients with

rheumatoid arthritis (RA). A study from Brouwer, et

al (2004) explained that caregivers who provide care

for the RA patients considered the elderly as

relatively unhealthy. This become the illustration

that caregivers having the experience of burdened on

the treatments and risk creating caregiver role strain

that will affect the elderly such as the elderly

mistreatment, harmful as well as abusive actions,

neglect, exploitation and crime that can harm the

elderly. Therefore, this study aims to examine the

experience of caregivers in providing self-care needs

of the elderly with RA in Aceh, Indonesia.

2 METHODS

This study used qualitative research methods with a

transcendental phenomenology design. It is

directivity to a specific object about experience,

knowledge and the design reflects the meaningful of

life experience in a person's life with a concept or

phenomenon (Creswell, 1998).

The study involved 8 caregivers who provide

care to the elderly with RA health problems at

Rumoh Seujahtra Geunaseh Sayang social welfare

(nursing home) in Banda Aceh, Indonesia. This

research was conducted using in-depth interview

method equipped with field notes. The interview

results were made in the form of transcripts and

analyzed using the Miles and Huberman techniques.

This technique emphasizes on the interactive

steps consisting of data collection, data reduction,

data presentation stage, and conclusion. The results

of the transcripts were grouped and then produced a

theme related to the fulfillment of elderly self-care

needs with RA

3 FINDINGS

There are 4 themes emerged in this study, 1)

responding to changes in the elderly, 2) fulfillment

of universal self-care, 3) fulfillment of the

development of self-care, and 4) fulfillment of self-

care in conditions of health deviations.

3.1 Responding to Changes in the

Elderly

In this theme, the participants referred changes in the

elderly as the physical changes and complaints that

often occur within the elderly. The study resulted

complaints in the joints and musculoskeletal

disorders:

3.1.1 Complaints in the Joints

Participants revealed that the elderly had complaints

in their joints and having musculoskeletal disorders

during the recent years.

I also often see he (the grandfather) massage

his knees, he said they were feeling sick and

numb. (P1)

In the morning, sometimes in the afternoon

they (the elderly) complained of feeling

numb, the sense like something creeping into

the bones, and also feeling sick within their

joint. (P2)

3.1.2 Musculoskeletal Disorders

Beside complaints in the joints, the participants said

that musculoskeletal disorders also appear along

with the elderly physical activity.

Because I can see that he (the grandfather)

has trouble when he walked... (P1)

Complaining about the movement also exists

but sometimes they (elderly) also complain

about experiencing the slow movement

(because of the musculoskeletal disorder).

(P4)

3.2 The Fulfillment of Universal Self-

care

This theme focuses on the needs of the elderly

related to their physical care. These needs consist of

1) The needs of water resources and utilization, 2)

the needs of food and drink, 3) the needs of

elimination/bathing, 4) the needs of rest / sleep, and

5) the needs of exercise.

3.2.1 Water Resources and Utilization

Participants revealed that one of the important things

in providing self-care in the elderly is the source of

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water. The participants expressed that the water

resource in the nursing home was from the well and

local water company (PDAM).

The water resource is available in here, for

taking shower also doing the laundry, so

there is no problem with water (P1)

We use the well and PDAM (for elderly) in

this nursing home. (P2)

3.2.2 The Fulfillment of Eating and

Drinking

Most elderly at nursing home obtained their food

and drinking water directly from the kitchen:

In order to eat... I take the food three times a

day from the kitchen, and then the elderly

ate by themselves, if the grandmothers are

sick, I will feed them. (P2)

I deliver the (drinking) water from the

kitchen, the elderly just wait at their room. I

deliver it (drinking water) three times a day

to their rooms.... (P2)

3.2.3 The Need for Elimination/Bathing

The participants revealed that elimination/bathing

needs were not an obstacle for the elderly in the

nursing home because everything would be taken

care by the caregivers, both healthy and sick

elderly.

The grandfather is independent, he is still

capable of himself. If he is feeling sick again,

I help him to the bathroom. (P3)

For bathing, the elderly is independent so,

mostly they don’t need any support.

However, I keep them monitored. (P4)

3.2.4 The Need for Rest/Sleep

The participants revealed that the elderly had no

complaints about the need of rest or sleep:

There are no complains of sleeping needs,

after the Isha prayer (at the evening) he (the

elderly) went to sleep, sometimes after

recitation of (the qur’an) at mushalla he

went straight to the room to sleep. (P1)

If the grandfather sleep (early) at the night,

he will wake up early in the morning, I

usually help him to bed at 10 o’clock... (P5)

3.2.5 The Fulfillment of Exercises

Besides the biological needs for physical care, the

participants revealed the need of exercises

activities. The physical exercise is part of the

weekly activity in the nursing home, in the form of

elderly light gymnastics which is led by the

gymnastics instructors:

There is gymnastic (activity) every Thursday

morning in the hall of nursing home which

is led by the instructors. (P3)

The gymnastics for the elderly is every

Thursday morning in the (nursing home)

hall...Most elderly attend but not all of them

join the activity. (P7)

3.3 The Fulfillment of the Development

of Self-care

The elderly focused on the development of self-care

to the things that they thought could support their

self-care and the needs that they categorized as self-

care. The data resulted 3 sub-themes, namely the

availability of facilities and infrastructure, the need

to interact and anticipating threats:

3.3.1 The Availability of Facilities and

Infrastructure

The participants revealed that the nursing home

provides the walking path training for the RA

patients. This path mostly considered for the elderly

whom having the difficulty in mobilizing their

physical activity:

There is walking path training at the front of

the nursing home... Sometimes, I help the

elderly to use it. (P3)

3.3.2 The Need to Interact

The participants expressed that some elderly like to

be alone or rarely want to interact with others. It was

based on the following participant’s statement:

But she (the grandmother) rarely interact

with another, she doesn’t like noisy (having

chat) environment especially close to her

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121

bedroom. Also she has a habit to be alone in

the room. She doesn’t have any problem

with another (elderly), she just like to be

alone…she will have a chat when she need

to chat (with everybody in this nursing

home). (P4)

3.3.3 The Need to Anticipate the Threats

The participants revealed that the elderly had no fear

or worry during their stay in the nursing home. It

was in accordance with the following statement:

As long as I am here there is no complaining

(about fear) from the elderly, why they are

not afraid, because there is a security guard

and (the place) is crowded... (P1)

There is a security guard; they also go

around (checking) in the night. (P1)

3.4 The Fulfillment of Self-care in

Conditions of Health Deviations

In this theme, it explains the needs of elderly people

related to their care when they are in unhealthy

condition. The results of the study obtained 4 sub-

themes namely the existence of health assistance,

receiving care, getting therapy and lifestyle needs:

3.4.1 The Existence of Health Assistance

The participants said that in the nursing home the

elderly receive health assistance from the clinic,

health center, and hospitals.

There was also the Otolaryngology

(specialist doctor) from the RSZA (hospital),

also an ophthalmologist and the staff from

Ulee Kareng Health Center comes regularly

every month to the nursing home. (P1)

3.4.2 Receiving Care

The participants revealed that the elderly received

the care and treatment while in the nursing home.

This was in accordance with the following

participant’s statement:

Some of the elderly were very obedient

while they were sick, but sometimes, some

of them went back to their hometown to get

the treatment in their hometown. (P7)

3.4.3 Getting Therapy

The participants revealed that the elderly obtained

the therapy, such as light therapy, massage and

therapeutic modalities in the nursing home.

The therapist (the nursing home clinic

physiotherapy) usually provide the treatment

to relieve the pain and also to improve blood

circulation of the grandmother – grandfather

(elderly). (P4)

3.4.4 The Lifestyle Needs

The participants said that some of the elderly have a

habit of accepting what they obtained from the

nursing home, but some of them were also have lots

of requests.

Some of the elderly will accept (the care) but

some of them are not... (P2)

The grandfather is very clean and neat in

terms of the habit of placing his goods.”(P3).

4 DISCUSSION

The results of the study found that the participants

responded to the changes within the elderly with RA

health problems. The elderly responded having

complaints in the joints and musculoskeletal

disorders.

Furthermore, McCulley, et. al (2018) described

some of the symptoms that can be marked as RA

including the joints pain in the morning for about an

hour together with the stiffness and limited physical

movement, inflammation of more than three joints

followed by swelling, gradually feeling weak. If this

response improperly handled, the independence of

the elderly in providing their daily needs will be

reduced. In accordance with Ru, et. al (2018), found

a significant relationship between RA pain and the

level of independence in carrying out the daily

activities within the elderly.

Participants revealed that the changes were

perceived such as feeling pain of the knees as if the

feeling of, numbness, felt like something was

crawling on both feet especially in the morning and

when the weather was cold. Moreover, the elderly

also feeling, the difficulty in walking and it affected

their physical movements. These changes have

caused weaknesses, limited activities, and have a

higher tendency to dependent on their caregivers.

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It can be assumed that caregivers need to have

good knowledge and skills in dealing with and

treating the elderly with all the limitations. This

situation allows limited problems that will aggravate

the condition of the elderly with RA health

problems. Therefore, the caregivers will have the

ability in providing the care in the form of physical

problems and the elderly will be less at risk.

Within the theme of the fulfillment of the

universal self-care refer to the ability of the elderly

to fulfill their basic needs. The self-care theory from

Orem (2004) mentioned that universal self-care

requisites are divided into eight self-care needs,

including: maintenance of air, water/fluid, food, the

process of normal elimination, balance between

activity and rest, balance between loneliness and

social interaction, prevention of danger for human

life, function and welfare, as well as the efforts to

improve the function and development of

individuals in social groups according to their

potential, limitations, and desires for normality

(Brouwer, et. al, 2004). Ndosi, et. al (2016)

explained the self-care needs of patients with

chronic disease problems, which consist of the

fulfillment of self-care needs: eating, air, bathing,

hair shaving, dressing, elimination of defecation, rest

and sleep, drink and interaction. In accordance with

this study, the fulfillment of daily self-care needs

were conducted by participants in the form of water

resources and utilization, fulfillment of food and

drink needs, elimination/bathing needs, rest/sleep

needs, and exercise needs.

The study emphasized the caregivers to have

good communication skills when they oriented the

elderly in providing their daily needs. The tendency

of mood changes cannot be avoided, since the age

increasing within the elderly coincides with the

occurrence of social changes such as the tendency of

having low interest in continuing to interact with

those around them, which can be caused by the

health problems especially with RA. The caregivers

in dealing with the older adults must embed the

patience and sincere intentions; thus, the daily needs

of the elderly can be continue to be fulfilled

optimally.

The theme of self-care development refers to the

Orem’s self-care theory, which emphasized on the

development of self-care requisite as a stage of self-

development according to the stages that can occur

in humans. It is the provision of conditions that

support the development process in the form of

facilitating individuals in the development stage,

involvement in self-development and activities and

prevention against threatening disturbances. Chung

et. al (2016) describes the family's experience

providing the care and fulfillment of self-care in

patients with chronic disease problems found the

fulfillment of developmental tasks relate to the age

of elderly. This need is connected to the

development process, which can be influenced, by

certain conditions and events. Therefore the form of

different stages experienced by each individual is

affected by the changes in body condition and social

status. Experts explained to achieve re-

empowerment of the elderly can be sought by

creating a climate or atmosphere that allows its

potential to develop, strengthen the potential that has

been owned, protect and prevent the weaknesses of

becoming weaker and through direct practice of the

learning process. In this study, providing the needs

of daily personal care carried out by the caregivers

supported by the availability of facilities and

infrastructure also the need to interact and anticipate

threats.

The study revealed that the assistance system

which is provided by the caregivers to the elderly

with RA in terms of improving the development of

self-care, involvement in self-development and the

development of prevention of life-threatening effects

has been carried out but still inadequate. The study

suggested that participants need to gain the

knowledge and provide the optimal support related

to the utilization of training facilities for self-

development, education and therapeutic modalities

to overcome rheumatic health problems in the

elderly.

Another theme that emerged from the study is

the fulfillment of self-care in health deviation. The

Health Deviation Self-care Requisites in Orem’s

self-care theory is associating the needs with the

deviations aspects of human structure and function.

Someone who is sick, injured with certain

pathological conditions, disability or inability, or

someone who is undergoing treatment still require

adequate self-care. The conditions of health

irregularities or health changes including the health

assistance and awareness of the risk of problems,

therapy, and lifestyle, also need self-care support.

Guoxia & YuDing (2016) described the Health

Deviation Self Care Requisites related to the

existence of health status deviations such as: illness

or injury conditions, which reducing an individual's

ability to fulfill his self-caring needs in a permanent

or contemporary manner. The self-care needs on the

occupational therapy, which in accordance with the

statement from the Department of Health (2006),

were the physical therapy and occupational therapy

can reduce pain in a non-pharmacological way since

Caregivers’ Experiences in Providing Self-Care Needs of Elderly with Rheumatoid Arthritis: A Phenomenology Study in Aceh, Indonesia

123

the physical therapy and physical exercise will assist

in maintaining and restoring the range of joint

movements and reduce the pain, stiffness and

muscle spasms of the elderly with RA.

The fulfillment of self-care needs in the

condition of health deviations carried out by the

caregivers should emphasize on accompanying the

elderly during the physiotherapy. Furthermore the

caregivers should also teach the elderly in order to

perform their simple physiotherapy and activity, in

order to support the elderly being independent in

fulfilling their self-care needs.

5 CONCLUSION

The study identified the caregivers’ fulfillment of

the elderly self-care needs. It was revealed that the

caregivers have the spirit and belief in the value of

worship in order to provide care of elderly with

health problems, especially RA. To sum up the

caregivers emphasized on considering providing the

care to the elderly in the social welfare institutions

as caring for their own parents.

ACKNOWLEDGEMENT

The first author would like to thank the Abulyatama

Aceh Foundation for funding this research and

Nursing Program of the Faculty of Medicine,

Abulyatama University for their support in

completing their study. All the authors thanked the

caregivers in nursing home of Rumoh Seujahtra

Geunaseh Sayang of Social Institution for their

participation in this research.

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