Samina Vertejee  ( Aga Khan University School of Nursing and Midwifery (AKU-SONAM), Karachi, Pakistan. )
Saleema Allana  ( University of Alberta, Canada )
Rozina Somani  ( University of Toronto, Canada )
Saher Aijaz  ( Aga Khan University School of Nursing and Midwifery, Karachi, Pakistan )

Objectives: The growing number of older people due to demographic transition is paving the way for nongovernmental organizations and the private sector for mushrooming of old age homes (OAHs). These homes function either free or fee for services and the services provided at these OAHs determines the quality of life of older people. The aim of the study was to explore the stakeholders' perception on the quality of services offered to people living in OAHs.

Methods: A descriptive qualitative study design was used to explore stakeholders' perception of elderly living experiences in old age homes. Three OAH were selected through purposive sampling for the study. Data collected from February-March 2015 through the structured interview guide. Participants' for FGDs were recruited through universal sampling, while purposive sampling was used for KIIs selection. Researcher ensured all ethical considerations for the entire study period.

Results: Two major themes were drawn including the reasons and experiences of older people living in OAH, secondly the need for caregivers' academic competencies. Majority of KIIs and FGDs reported common responses under the two themes. Also the elderly experiences varied from living comfortably to being depressed. KIIs and caregivers' FGD participants' strongly urged the need for caregivers' training and institutional accreditation.

Conclusion: The results of the study on the older people's experiences and challenges of living in OAHs, strongly propose community support system and credentialing of the caregivers for age appropriate care. Moreover the capacity building of academia for offering specialized training in gerontology and geriatrics is also highlighted.

Keywords: Caregivers; Elderly; Institutionalization; Old Age Homes, Geriatric health and wellbeing. (JPMA 70: 2205; 2020)

 

DOI: https://doi.org/10.47391/JPMA.606

 

Introduction

 

The demographic transition and resulting increased number of older people entailed serious repercussions globally for past 20 years and if continued, there will be significant toll of older people in the upcoming years.¹ Moreover the substantial increased life expectancy and increased number of elderly is associated with socioeconomic and health consequences; hence their care and needs are becoming a major challenge worldwide.² The poor socio-economic condition compounded with frailty, dependence and frequent hospitalization due to chronic diseases imposes additional burden. The increased dependency ratios spearheads the neglect and relocation of older people Old Age Homes (OAHs) in both the high and low income countries.³ The trend of forced or voluntary relocation of older people to OAHs is also significantly observed in Pakistan. This might be associated with change in family structure; brain drain; diverse family commitment, poor caregivers knowledge of special needs of older people.^4-6 Although in Asian countries filial piety is the key cultural norm; the abandonment of old parents to OAHs is culturally despised.⁷ Pakistan, being an Islamic state and eastern society, is also known to ensure the reverence and preserving the dignity of older people. Hence poor socioeconomic conditions and escalating number of older people with chronic health conditions, increased health care cost and poor caregivers paying capacity has resulted in demeaning of religious and social norms leading to abandonment of older parents to OAHs.⁸ Unfortunately the lack of state-owned OAHs has facilitated the proliferation of not-for-profit or business model OHAs, however not much empirical data is available on the quality of care in these OAHs.⁵ The researchers' personal observation validates the compromised care in these OAHs, absence of structured national monitoring system and recruitment of untrained caregiver (lay workers in many cases) for older people. A survey report of 1998 in Pakistan revealed increased trend of relocation of older people to OAHs while 98% of the older people wanted to live in their own homes. The report highlighted that the quality of services in these OAHs remains questionable.⁹ Under the current scenario, the study aimed to explore the stakeholder perception on the reasons and experiences of older people living in OAHs to relate to the quality of services offered in OAH. It also examined the need for caregivers' competencies and the accreditation of OAHs.

 

Subjects and Methods

 

Descriptive qualitative design was used to explore stakeholders' perception of older people living in OAHs. Three OAHs (sample site) were selected using purposive sampling, with the full knowledge of relevant characteristics beneficial to the study.¹⁰ Participants' for Focus Group Discussions (FGDs) at the selected sample sites were recruited through universal sampling i.e. all residents and their caregivers were invited for respective FGDs. Participants for Key Informant Interviews (KIIs) were those who were engaged in managing care and welfare of older people. Therefore they were selected through purposive sampling, so the data obtained was beneficial to the subject matter. Data was collected in February and March 2015 through researchers' designed interview guide until data saturation was reached. The interview guide included following key components, 1). Older peoples' reasons and experiences of living in OAHs; 2) factors effecting the living condition in OAHs; 3) need for caregivers academic preparedness and 4) Institutional accreditation and standardization of the serviced. To maintain the consistency in data collection the interview guides were translated from English to Urdu language. Altogether six KIIs and six FGDs were conducted; each FGD lasted for 60 minutes and two FGDs at each sample site were conducted, one for caregivers and one for older people with 6-8 participants in each. Each KIIs lasted for 30 to 45 minute's. All FGDs and KIIs were tape recorded with prior permission of the participants. Field notes supported the thematic analysis support. The researchers ensured credibility, transferability, dependability and conformity throughout the data collection and content analysis process. This helped in validity and reliability of the research process.¹¹ The data was transcribed and translated back to English language for analysis. The inductive stepwise content analysis process was adopted. The data analysis was carried out manually. The researchers repeatedly read the data diligently to eliminate any chances of data gaps. The researchers assigned the codes to each response according to the interview guide to draw the themes. Two major themes emerged from data; including the older people's reasons and experiences of living in OAH and the need for caregivers' competencies in age appropriate care and accreditation of OAHs. All ethical considerations were ensured including clearance from the institution's Ethics Review Committee, permission from study site, participant's consent, participants pseudonyms and data security. Primarily research team collected the data supported by two data collectors who were trained to facilitate data collection process.

 

Results

 

The total number of participants was 38 respondents including 32 respondents of all six FGDs form three OAHs and 6 KIIs. Six FGDs comprised of 32 participants including 24 older people residing in three selected OAHs/study sites and their 18 caregivers. The data from caregivers' FGDs revealed that approximately 16(89%) of the caregivers were lay workers and only 2(11%) of them were trained nurses. Secondly the female caregiver outnumbered the male caregivers, i.e. 12(66.7%) of them were female while 6(33.3%) were male caregivers. The mean age of female caregivers was 35 ± 18.6 years while male caregivers mean age was 22.5± 3.4 years. Caregivers' average length of experience was 4± 6.4 years. Secondly the data from the FGDs of older people inferred average ages of participant of male and female i.e. 65± 4.6 and 64.6 ± 10.7 years consequently. Again in this group, the females outnumbered males i.e. females were 13(54%) as compared to 11(46%) of males. The average length of stay of these people was 28.7 ± 34.84 months. KIIs included administrators of the selected study sites, the member provincial assembly who was involved in developing the provincial Act for the welfare of older people and the head of the social welfare department who deals in the matters related to older people. Two major themes were deducted from the data (See Figure).

Few quotations under each theme are presented below. These quotations have a short marker which determines the whether the quotation is from FGD or KII with its number. The letter "SC" in the quotation indicates it is from the Older People FGD, while the letter "CG" suggest it is from the caregivers FGD. The numeric attached with either SC or CG indicates the number assigned to each participant. Likewise the KII quotation is indicated by "KII" and number assigned to it.

 

Theme I — Reasons and Experiences of older people living in OAH: The reasons for older people living in OAHs in FGDs and KIIs included, (a) Poor family's understanding of aging issues, (b) Poor family caregivers' commitment to care, (c) family conflicts; (d) brain drain and (e) economic burden. An older person expressed that, "I used to live alone at home; I used to be upset, nobody used to take care of me, so I came here". [FGD 2 (SC 2)]. While other participants in older people FGD said, "I have two brothers, who are businessmen…They don't keep me… their wives tell them to send me to a mental asylum." [FGD I - (SC 4)]. Family conflicts and diverse commitments were strongly highlighted by the participants. Majority of the participants expressed that sons leave their parents at OAHs to please their wives. A KII reported a case of man who left his mother at OAH to avoid conflict between his mother and wife. The KII reported, "When I enquired from the man, he also confirmed that due to the conflict between his mother and his wife, it was difficult for him to manage the care of his mother at home," KII-3. Participants' in older people FGDs also expressed concerns and fear of returning home; although they missed their family members especially the grandchildren. Hence they were reluctant to return home due to fear of constant conflicts and of being abused at home. A participant shared, "I have only one son; he is married…he doesn't even talk to me…He does not come here." The participant further added…If I go home it will be …environment of being physically abused and conflicts. I am not comfortable." [FGD 4 (SC 2)] Never married was another reason for living in OAH, these people reported that they had no one to look after them at home. A participant expressed that, "I used to live in … mental hospital. My family left me here, they left me. I shifted here; I cannot even go home because do not know about the ways and roads". [FGD I (SC 2)] Lack of family resources and chronic mental and physical illnesses was also a common reason for older people living in OAHs. Participants also reported family's lack of knowledge about the care for mentally sick parents, time commitment and affordability for treatment alas reasons for relocation to OAH. The experiences of living in OAH varied amongst older people; some of them expressed discomfort while others were comfortable living in OAH. A participant shared: "It is good all over here…I sleep at night, rest all the time and they provide us all the food. It is good here, no tension. Time passes." [FGD-1 (SC 2)]. The yearning for family was discussed at length in all FGD. They expressed that they wanted to live with family, especially the grandchildren. Some of them expressed a strong desire to spend time with them. A participant mentioned: "It is good here but nobody comes to meet me, I feel alone and bored. I feel like meeting the family members." [FGD-1 (SC 2)]. Caregivers' FGDs revealed that some older people are very caring and compliant, while others are agitated due to anger of being alone and ignored. They also reported older people mood swings and abusive language for caregivers. One caregiver said, "One uncle came; new admission… just told him to take food; he started abusing me verbally…..he said you are not my daughter that is why I verbally abused you, he tried to beat me" FGD I (CG 3). Another caregiver reported that: "We spend time with them but still they miss their family members; they are never satisfied with the care given by us." FGD III (CG 4). KIIs reiterated that these older people live away from home they react negatively with caregivers; they also expressed that the establishment of OAHs disintegrates family harmony and promotes lack of belongingness. One of them said, "The family should keep their parents at home… they should spend the last days of their life in comfort." KII-1 The field notes revealed predominant expression of pain and grief in FGD for older people while they were talking about their reasons and experiences of living in OAHs. Some of them also cried while talking about their children and home. Moreover, varied nature of living conditions were recorded on the field notes; including the poor lighting, ventilation and deteriorated floors in one the OAHs. While in another OAH older people were living on upper story without the facility of elevator to reach to the bed room. In almost all selected settings, the living arrangements did not ensure privacy of the residents, about 6 to 7 older people lived in one big hall. Hygienic conditions of one of the OAHs was also compromised with poor living condition.

 

Theme II — The need for caregivers' academic competencies:This was one of the big concerns determined in the FGDs and KIIs. The entire data revealed strong need for trained and competent caregivers. One caregiver uttered that, "If you ask us, are we trained? So we are not, we have gained on job experience." FGD I (CG1). A KIIs also highlighted the need for specialized training, one of them said: "Needs of aging people are different… therefore, the caregivers should be trained in age specific care," (KII-1). Another KII emphasized that: "Professional care givers' help reduces family fatigue," (KII-4). While caregivers and KIIs were convinced of the needs for specialized training of caregivers, the participants in older people FGDs also emphasized the same. They expressed the need to have trained caregivers who know how to care for older people. One participant in older people FGD said, "They should be taught how to take our care … learn to handle us well physically." FGD-1(SC-2) One KII also highlighted the need for monitoring system to ensure quality of service in these OAHs. The KII expressed, "This will ensure the regulatory system to safeguard the quality of life for senior citizens," KII-2. Public sector role in ensuring the quality of services was also one of the highly discussed topics. The community should take the ownership in establishing the mechanisms of monitoring. One KII said, "I think the licensing is one of the easiest things, you can bribe someone and make it done but communities and authorities should be responsible to make audits for such unethical practice" (KII- 4)

 

Discussion

 

The study results revealed poor state of elderly people living in OAHs, hence these can be viewed as contrary to the several pledges including the Universal Declaration of Human Rights and Constitution of Pakistan.^12,13 These pledges deliberate on equality, dignity and rights for "ALL" inclusive of older people, yet they are being exposed to inequalities and unfair treatment. The issue is further heightened by chronic illnesses and frailty along with financial insecurity, lack of government schemes on welfare of old people including health care services, housing and shelter.^5,8,14 The study findings also predominantly highlighted the society's attitude toward aging population. The violation of their rights whether at home or in the institution were significantly indicated in the study results. Several other studies also suggested that weak family ties, disrespect, poverty, hunger and social isolation impact the quality of life of old people.^4,6,15 The results largely revealed poor family support leading to lack of satisfaction, depression and solitude amongst older people. Such situations have paved the way for older parents to be relocated, regardless of their wish to be at home in the later years of their life. Several studies reported lack of willingness of old people to be relocated; a survey report in Pakistan indicated that 98% of old people wished to live in their own homes with their dear ones.⁹ Another study's findings suggested that urbanization, family conflicts, modernization and brain drain play a significant role in denying the care of old parents.⁵ Moreover due to caregiver's diverse commitment, lack of resources to manage chronic and mental illness amongst old people is also a significant reason for relocation to OAH.⁹ The institutional caregivers are key players to ensure the health and wellbeing of old people. Therefore, their specialized training is highly needed to provide age appropriate care. It is important because in some cases the reaction to abandonment is depression, low selfesteem and aggressive behaviour. In such scenarios, the role of trained institutional caregivers is very important in providing person centered care to promote emotional engagement and a sense of security amongst the older people.¹⁶ The physiological and psychological changes in older people demands clear and technical understanding by a caregiver to appropriately respond to the needs. This is well supported by an Irish study finding, which suggested the holistic and individualized care promotes quality of life of old people.¹⁷ Some of the examples of western countries where health professionals are trained to care for old adults are Canada and USA. Though there are lesser number of health professionals going for such specialized courses; yet, there are courses available.¹⁸ The study results also revealed living experiences of old people in OAHs, including lack of privacy, poor lighting, flooring and hygiene. The findings did not vary much between one OAH to another. The situation demands for the need for institutional accreditation and standardization of services to provide comfort care. Thus, the study findings clearly indicated the major gaps in the system at all levels, from grass root to the policy level in lack of provision of age appropriate care. The study findings recommended the following to ensure the care and comfort of the old people in society. These include: community awareness, community support groups to assist family caregivers cope with issues of aging. In some cases when it is unavoidable and parents have to be relocated, the private and public sector should join hands in developing policies on establishment and functioning of OAHs, developing policies for accreditation of OAHs, monitoring system to keep check standardized services, credentialing of caregivers to ensure age appropriate and holistic care to institutionalized older people. Lastly, the training of caregivers in care of old people is one of the most significant finding drawn from the study results. Therefore, it is important for public and private sectors to seriously consider revising the nursing and medical curricula to include content related to aging and issues related to it.

 

Conclusion

 

In conclusion the study results revealed key considerations including caregiver and OAHs credentialing through standardization of services. The results also determined the need for monitoring system to ensure the quality care at OAHs. The major strength of the study was the diversity of the study participants and the thoughtful selection of study sites. Secondly research team was diligently engaged throughout the study period. No data was excluded from the analysis until the researchers achieved consensus on coding. The field notes were significantly helpful in data analysis. However, lack of family caregiver's involvement in the study was a major limitation, which could have been pivotal to explore their perception as well on the subject matter.

 

Limitation

 

Though the research was conducted in 2015 and the results were presented at 12th National Geriatrics Conference KotaKinabalu, Sabah, Malaysia on Aug 4, 2016. However it could not be published due to two of the author's enrolment and commitment in the PhD program.

 

Disclaimer: The study findings were presented at 12th National Geriatrics Conference Kota Kinabalu, Sabah, Malaysia on Aug 4, 2016.

Conflict of Interest: The authors declare no conflict of interest in this study.

Declaration of Source of Funding: The research team declare to have received the funding from University Research Council. The grant number is 70301: Project ID: 142005SONAM.

 

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