Efficacy of educational intervention for reducing caregiving burden of family caregivers of older adults with disability in Nepal

Abstract

Abstract:

Introduction: The Increasing ageing population with disability and chronic illness has become a global health problem. The population of older adults aged 75 years and above is also rapidly growing in Nepal. The prevalence of chronic diseases, injuries, severity of disability, and risk of disability are increased because of ageing. High migration rates of youth, low fertility rates, a reduced potential support ratio, and small family sizes are possible reasons for the increasing caregiving burden. Besides these, a shortage of institutionalized health services and a lack of formal support to family caregivers may also increase the caregiving burden. Family caregivers are the pillar of providing care to those members who are chronically ill or disabled. They need to be directly involved in performing activities of daily living (ADL), care for disease-related symptoms, and manage necessary care. Continuous caregiving responsibility may affect their employment status, further education, finances, and social life. Caring for older adults with disabilities may be a highly stressful experience. Evidence shows that prolonged burden may lead to emotional stress, burnout, and psychiatric problems. Long-term burden may compromise an individual’s immunity, poor physical health, worsening health-related quality of life, and increased mortality. It also deteriorates work participation, financial problems, and social isolation, and may influence decisions to institutionalize care recipients. The Government of Nepal could not address the rapidly increasing care needs of older adults with its limited health care system. Therefore, it is important to develop an educational intervention program for reducing caregiving burden. To meet the health demands of the ageing population, psycho-educational intervention is a feasible and effective method for low- income countries like Nepal. With limited time, underdeveloped information and communication technologies, and the absence of respite or support groups, educational interventions based on Roy’s Adaptation Model, combined with knowledge and skills, are effective in reducing the care burden of family caregivers. The best method for delivering educational intervention is the individual multiple sessions’ interaction through face-to-face.

Objective: To identify factors associated with caregiving burden of family caregivers of older adults with disability; to develop psycho-educational intervention, and to determine the efficacy of psycho-educational program for reducing caregiving burden of family caregivers of older adults.

Methods: The study entitled “The efficacy of educational intervention for reducing caregiving burden of family caregivers of older adults with disability in Nepal” was followed mixed-method study. A descriptive cross-sectional survey design was used for conducting a pilot study and identifying factors associated with the caregiving burden of family caregivers of older adults with disability. For a qualitative study, a phenomenological study design was used. To determine the efficacy of educational intervention for reducing the caregiving burden of family caregivers, a randomized clinical trial study was used. For the pilot study, phenomenological study and pretesting of psycho-educational intervention, Tokha Municipality was the research setting, and the family caregivers of older adults with disability were the sampling population. Similarly, Tarakeshwor and Gokarneshwor Municipalities and family caregivers of older adults residing in these two municipalities were the sampling population of this study. For educational intervention, those family caregivers who had a caregiving burden were identified in the descriptive study.

The sample sizes for the pilot study were 60 family caregivers of older adults with disability; for the descriptive cross-sectional study was 430 family caregivers; for the phenomenological study, 7 family caregivers; and for the randomized clinical trial, 60 family caregivers (30 in intervention and 30 in control groups). The inclusion criteria were 1) Family caregivers of older adults who were aged 60 years and above and have disability at least in one ADLs and unable to perform more than three IADLs (cooking, shopping and using telephone); family caregivers who were most of the care or assistance for their older adults at least three months. The exclusion criteria for this study were family caregivers who could not communicate clearly, as measured by the Six-Item Cognitive Impairment Test (Score ≥11) and formal caregivers who were paid by family members for taking care of their older adults. A structured interview questionnaire in the Nepalese language was used for the pilot study, descriptive cross-sectional study, and randomized clinical trial. The structured interview questionnaire consists of five sections. Section I: Socio-demographic characteristics of older adult and family caregiver; status of impairment in ADLs and IADLs, status of care provision related variables, section II: Nepalese version of six-item cognitive impairment test scale; section III: Nepalese version of Social support rating scale; Section IV: Nepalese version of 22-items Zarit Burden Interview Questionnaire and Section V: Nepalese version of quality of life questionnaire (SF-36). For a phenomenological study, an in-depth interview guideline in the Nepalese language and an audio-recorder, and field notes were used.

First phase: Instrument validation and pilot study. The English version of the Six-Item Cognitive Impairment Test (6-CIT) and Social Support Rating Scale (SSRS) were translated into the Nepalese language with the help of a bilingual translator and the researcher herself. A nursing experts group comprised of one lecturer from psychiatric nursing, two associate professors from adult health nursing, one retired professor, and one research expert independently rated the content validity index of the Nepalese version of 6-CIT and SSRS. After that, a pilot study was conducted using a descriptive cross-sectional survey through a non-probability purposive sampling technique among 60 family caregivers of older adults with at least one ADL and four IADLs for ≥3 months residing in Tokha Municipality with the objectives of identifying reliability of SSRS and also identifying feasibility of remaining parts of instrument. Data were collected through the Nepalese version of a structured interview questionnaire from September to October 2021.

Second Phase: A Descriptive cross-sectional survey was conducted among 430 family caregivers of older adults with disability through a non-probability purposive sampling technique, residing in Tarakeshwor and Gokarneshwor Municipalities of Kathmandu District. Data were collected by using the Nepalese version of a structured interview schedule in January 2022 to March 2022 with the objective of identifying factors associated with caregiving burden.

Third Phase: Evidence Generation and Development of Educational Intervention Program. Evidence was generated through a phenomenological study, revision of the basic education system of Nepal, and a narrative review. The phenomenological study was conducted among 7 family caregivers of older adults with disability, who participated in a pilot study by using a non-probability purposive sampling technique in February 2022 to March 2022 to explore caregiving experiences of family caregivers. Likewise, by reviewing the curriculum of primary to higher secondary level education in Nepal, older adults-related course contents were missing in the new curriculum. Based on the findings of a phenomenological study, the structure and contents of the extensive narrative review were done based on published articles available in different sources of literature, especially Google Scholar, Hinari, PubMed, and from different websites. Based on evidence collected from a phenomenological study, review of the education system of school-level curriculum, and narrative review, a first draft of the Nepalese and English versions of educational intervention was developed by following British Medical Research Council (BMRC) guidelines from September 2022 to July 2023.

Fourth Phase: A Randomized Clinical Trial study was conducted to evaluate the efficacy of the educational program. For this, 60 family caregivers who had been caregiving were included in a descriptive study. Thirty family caregivers out of 163 of Tarakeshwor as the intervention group and 30 out of 118 of Gokarneshwor municipality as the control group were selected by using a simple random sampling technique. Educational program was delivered to 30 family caregivers of Tarakeshwor Municipality in 5 sessions by using the Nepalese version of the validated educational program from August 2023 to September 2023. For the control group, no intervention was rendered. After 3 months of educational intervention, the data were collected by using the same interview questionnaires used in a descriptive cross-sectional study from both the intervention and control groups in January 2024. The educational program was also given to 30 family caregivers of Gokarneswhor Municipality as an intervention group, which was in 5 sessions from January 2024 to February 2024.

Results: As the current study was completed in 4 phases, the findings of this study were in the following sequence: findings of pilot study, cross-sectional survey, phenomenological study, narrative review and educational program, and randomized clinical trial. First phase: Instrument validation and pilot study. The findings of the content validity index provided by 5 experts on the Nepalese version of 6-CIT and SSRS were 0.90 and 0.75, respectively. Similarly, 23.3% of family caregivers had experienced caregiving burden; 80.0% of family caregivers expressed a moderate level of social support. Cent percent of family caregivers gave responses to all items of the questionnaire as which means the questionnaire was clear and understandable. The Cronbach’s Alpha value of the Nepali version of the social support questionnaire found in the pilot study was 0.794. Second Phase: Descriptive cross-sectional survey. The findings of a descriptive cross-sectional survey depicted that the mean score of caregiving burden of family caregivers was 24.73±10.14, 34.7% of family caregivers had no or mild, 57.9%, 6.5%, and 0.9% had moderate, moderate to severe, and severe burden, respectively. Older adults’ related possible factors of caregiving burden were diseases of older adults {COPD (0.017), hypertension (0.000), paralysis (0.000), urinary problems (0.041), gastrointestinal problems (0.001)}, their health problems category (0.000), memory status (0.003), impairment status of ADLs (0.000) and impairment status of IADLs (0.008). Family caregivers’ related possible factors of caregiving burden were their occupation (p=0.015), economic status (p=0.047), residency types (0.006) and types of family (p=0.001), family size (p=0.038), perceived extra stress (p=0.000), caregivers’ health status (p=0.000), duration of care providing (p=0.042), daily care providing hours (p=0.000), and sleep duration at night (p=0.000). The predictors of caregiving burden were older adults with hypertension as its adjusted odds 1.96 (CI: 1.12-3.43; p=0.09), with gastrointestinal problems as its adjusted odds 3.33 (CI: 1.35-8.21; p=0.009), complete impairment with its adjusted odds 0.37 (CI: 0.16-0.87; p=0.022) as compared with partial impairment status, insufficient economy for less than 1 year with adjusted odds 1.79 (CI: 1.05-3.05; p=0.031) as compared with sufficient for equal or more than one years; the caring duration for 3-35 months with adjusted odds 0.60 (CI: 0.36-0.98; p=0.043) as compared to 3 year or above and the average daily caring hours for 8 or more with adjusted odds 2.84 (CI: 1.14-7.06; p=0.025) as compared to daily caring hours less than 8 hours. Third Phase: Evidence gathering and Development of educational program. As evidence gathering, the findings of a phenomenological study revealed that family caregivers had mixed experiences. Some perceived positive experiences as self-satisfied and self-motivated, learned new skills, perceived good family support, and received appreciation. Some perceived negative experiences as physical or mental exhaustion, social isolation, insufficient family support, more stress while caring male older adult, and perceived lifestyle changes, quitting a job, discontinuation of education, or even suppression. Likewise, most of the family caregivers faced financial difficulties. Besides these, socio-culturally, they expressed that most older adults preferred a son over a daughter. The finding also showed that they had low awareness of physiological and psychological ageing changes, and also had some misconceptions about ageing changes. While reviewing school school-level curriculum found that older adult-related contents were deleted from the environment, health, and population course book of grade IX, while the Government of Nepal only added older adult-related curriculum in the +2 curriculum as an elective course, but still now this course has not started. This review showed that lack of awareness of ageing. Based on evidence generated from phenomenological study, review of education system of school level curriculum, further narrative review was done on following sequences: developmental task of older adults, ageing changes that could exist among older adults, early identification and preventive measures of the psychological changes of older adults, caring for older adults having dementia and Alzheimer’s diseases and different stress management activities for family caregivers. The first draft of the educational program was written in both Nepalese and English. Then, this first educational intervention program was further reviewed by 5 expert committee. Suggestions were adapted in the educational program. Three family caregivers who participated in a phenomenological study introduced 5 sessions of an education intervention. After one week of intervention, verbal and written feedback from them was collected. At the end of this phase of research, the researcher developed a psycho-educational intervention program in the Nepalese language with the consultation of experts, sharing with family caregivers and a bilingual expert. The final version of an educational program entitled “Care of My Older Family Member and Myself” in both English and the Nepalese language was developed after further review by the expert team. The structure and sessions of the educational program were 1) review of the previous session (from the second session), 2) description of the content of the session, 3) summary of the session, 4) exercises at home, and 5) discussion about any doubts. The contents of psycho-educational intervention were developmental task of older adults, possible physiological changes, awareness on different activities that can overcome the possible physiological changes of older adults, risk factors and signs of psychological problems and management of forgetfulness, dementia and its management, Alzheimer and its management especially communication techniques, psychosocial issues of older adults, strategies for supporting people with psychosocial issues and awareness on emotions and its management and awareness and home assignment on practice of Om chanting and mindfulness meditation. Fourth Phase: Conducting a Randomized Clinical Trial Study The findings of the randomized clinical trial depicted that after 3 months of educational intervention for 30 family caregivers residing in Tarakeshwor Municipality in 5 sessions of an individual educational program for an intervention group, data was collected from 30 family caregivers of each group residing in Tarakeshwor and Gokareneshwor municipality, respectively. The findings of caregiving burden of the intervention group were low as compared with the control group, with the mean score of caregiving burden being only 14.6±5.96 intervention group, while in the control group the mean score was still as high as 28.70±5.62. In comparing the mean score of caregiving burden in both groups, it depicted statistically significant association was found p-value of the Mann-Whitney U test less than <0.01. To further quantify the magnitude of the intervention effect, the calculated value of Cohen’s d was 2.43. This represents a very large effect size, indicating that the educational intervention had a substantial impact on reducing the caregiving burden of family caregivers of older adults with disability.

Conclusion: Through expert review, the content validity index of the Nepalese versions of 6-CIT and SSRS were 0.90 and 0.75, respectively. The pilot study showed 23.3% of family caregivers had experienced burden. The Cronbach’s Alpha value of the Nepali version of the social support questionnaire was 0.794. The findings of a descriptive cross-sectional survey study conclude that nearly two-thirds (65.3%) of family caregivers have a burden. The predictors of caregiving burden are hypertension, gastrointestinal problems, complete impairment in ADLs of the older adults and low economic status, continuous caring for 3-35 months, and daily caring hours (≥8) of the family caregivers. The findings of a phenomenological study conclude that family caregivers have positive and negative experiences, have low awareness of ageing changes, and still have misconceptions regarding the perception of ageing changes. There is a lack of awareness programs regarding ageing changes, as no content is included in up to school-level education. Then, the findings of the narrative review help to write the structure and contents psycho-educational intervention program in both English and Nepalese language and finalize a culturally accepted educational program by consulting with experts, delivering educational intervention to 3 family caregivers who participated in the phenomenological study. Likewise, the findings of the randomized controlled study conclude that after providing educational intervention in five sessions at their home setting, the caregiving burden is found to be low compared with the control group. Based on conclusion, it is recommended that Government of Nepal need to include contents of ageing changes and its related management in school level curriculum again to reduce misconception towards ageing family members, allocate budget for the needy family caregivers based on their economic status and implement and continue awareness program to all family caregivers of older adults from local authorities as well as local health institutions.