A qualitative study protocol of ageing carers’ caregiving experiences and their planning for continuation of care for their immediate family members with intellectual disability

Family caregiving of their loved ones can be a satisfying and joyful experience. Despite these satisfying outcomes, a main concern has been about the family carer’s health and well-being in general. Family caregiving is known to be a formidable task that is highly emotional and burdensome, and requires timeless commitment and efforts [1‐5]. Indeed, the issue concerning the health and safety of carers owing to the caregiving demands that put them at risks for injury and adverse events has already been highlighted by Reinhard et al.’s work [6] on supporting family carers in providing care. Another key caring issue they highlighted is on the need to help carers learn to be competent people to better protect the care recipients from harm [6]. These issues are especially true for the family carers of persons with intellectual disability (ID) who may be providing care and support of varying scope, intensity and duration. Regardless of whether the person with ID is a young child or an adult, or has varying grades of severity - mild, moderate or severe ID - family carers will always have concerns about the person’s caring needs, and sourcing supportive services and resources that can help them relieve their concerns so that they can continue to manage their loved one’s future welfare and well-being as the ID sufferer approaches old age.

With the awareness of the imminent increasing number of ageing persons with ID, the World Health Organization (WHO) and some international organizations have put emphasis on promoting the general health status of this group of people, and explored conditions that support their longevity [7]. Specific to the carers of these persons, there is limited information about the transitions in the caring process in which carers pass through over time in order to meet the range of changing caring needs of the ID sufferers. Therefore, this study will explore the crux and extent of the caregiving situation. This will serve to collate the current caregiving experiences and the support received directly from the carers concerned, and their plans for future care and the well-being of ID sufferers as they are approaching old age.

Intellectual disability is classified under mental disorders by the WHO. ID is defined as a person who has ‘significantly reduced ability to understand new or complex information and to learn to apply these new skills (i.e. impaired intelligence). This results in a reduced ability to cope independently (i.e. impaired social functioning), and begins before adulthood, with a lasting effect on development’ ([8], p.3). A person is diagnosed with ID by assessing three areas: (1) level of intelligence using an Intelligent Quotient (IQ) test, (2) level of independent functioning using a validated measure or clinical observation, and (3) evidence that these impairments were present before aged 18 years [8]. Based on this assessment, local policies have been enacted to protect persons with ID in the areas of education, employment and rehabilitation.

Comparatively, while the prevalence rate of the number of people with ID has been 0.05–1.55% [9], statistics for Asia is at 0.06–1.3% [10]. Indeed, over the past few years in Hong Kong, there has been an incremental increase in the number of persons with ID from 2008 to 2014 as well. According to the government statistics in 2008, of 269,500 people with disabilities in Hong Kong, 62,000 to 87,000 were persons with ID, giving rise to a prevalence rate of 23 to 32% [11]. By 2014, there were 578,600 persons with disabilities (8.1% of the total Hong Kong population). The numbers have increased from 71,000 to 101,000 persons with ID [12]. Although it is acknowledged that people with ID are living and surviving longer and that quite a number are also reaching old age, it has been difficult to obtain statistics to support this claim. This has partly been attributed to the problems encountered in the under-reporting of persons with ID as mentioned in the government reports [11, 12]. Indeed, a recent news report in Hong Kong [13] also highlighted the inconclusive evidence on how to define an ageing person with ID and their average life expectancy. Without a clear consensus on this issue, instilling coordinated approaches to address the problems of ageing ID sufferers could be difficult. Despite this, a government paper [14] has outlined the support provided and measures taken in response to the ageing of persons with ID particularly on the support services, and issues of manpower, equipment and services in the service units.

The impetus to undertake this study is also timely supported by a recent alarming newspaper report entitled a ‘huge study on the disabled revealed as government accused of ignoring ageing problems’ [13]. It stated that more than 11,000 people with ID who were surveyed in the past year mainly relied on the care provided by their elderly parents. Those surveyed were currently using day centres, care homes and employee support services. Indeed, the plights and conditions of the carers who are also ageing themselves, and their high concerns for the future and continuing welfare of the soon-to-be old family persons whom they are looking after were clearly evident. This outcry was a demand for more help and attention to be given to address the multiple needs of ID sufferers and to provide longer term support such as government subsidized nursing homes or infirmary care units.

Over the past decade, scholarly work has shed some understanding of the caring issues faced by family carers of ID persons. For carers, Mak and Ho’s work [15] on caregiving perceptions of 212 Chinese mothers of children with ID in a non-governmental organization was an attempt to consider the coping style and the experience that could be unique to the Chinese culture. Relationship-focused coping strategies were found to be more suitable for understanding Chinese carers’ perceptions of caregiving stress, burden and family support as opposed to problem-focused and emotion-focused coping strategies. The follow-up work by Lin [16] was a typical example of local work that surveyed the high stress level in caregiving and its impacts on the psychological well-being of 54 parents rearing children with severe ID. The work was able to extend an understanding of perceived stress and coping strategies with their subjectively perceived quality of life. Of the three major stressors identified as the caregiving tasks (such as bathing, toileting, shopping, lifting and physical handling), future planning and child’s health, internal coping strategies were adopted to manage these stressors and parents were less likely to seek help from others. There are also studies conducted to examine stressors, caring burden and coping strategies of parents immediately after the birth and acceptance of a child with ID [17, 18]. These studies suggest areas for further work by exploring and describing in greater depth the nature and impacts of the stressors on family carers’ ability to handle the daily caregiving tasks. Additionally, the kind of support and assistance that these carers would expect to support their needs warrant greater attention, especially when they tend to decline help from others, particularly health care professionals.

For the ID sufferers, some qualitative studies conducted have shed understanding on the provision of life skills training, guidance and employment support programmes so that they can lead meaningful lives, and minimize the strain on their families [19]. Findings from a study on vocational aspiration and the level of assistance needed in decision-making of 23 persons with ID in sheltered workshops indicated that they were motivated to have employment, but they had limited self-determination in the workplace [20]. Another study found that the younger persons with ID could have a higher self-concept than that of a comparison group of people without disabilities [21]. Of importance to them were family self, social self and achievement in school and work. Partnership with the family was important in facilitating them to develop positive self-concepts and achieve community integration.

More recently, Li et al. [22] examined the difficulty and burden experienced by family carers of persons with ID. Physical caring was perceived to be significantly more challenging than social caring and daily caring. Similarly, time-dependence burden was more severe than developmental, physical, social and emotional burden. Although the study categorized the types of caring difficulty and caring burden in terms of its importance and severity, there was no information about the transit points along the caregiving journey that could be linked to the different types of caring challenges faced by the carers. An exploration of each categorization using the actual experiences as told by the family members may be more meaningful in planning strategies and making suggestions to target at different time-points of the caregiving journey.

Despite the growing concerns of life satisfaction and health needs of family carers of persons with ID, there is a dearth of studies that uses a comprehensive approach to exploring the range of caregiving experiences by allowing the carers to truly express such experiences using in-depth interviews. Indeed, this study will produce a theoretical framework to capture these experiences in the caring process that can be best understood by studying it over time [23]. To date, studies conducted in Hong Kong have not adopted this approach in capturing the nature of caring needs, responses to address those needs, and to trace the plans for the future care of ID sufferers in their later life. A better understanding of the impact of the family carers needs and concerns over time would allow interventions to reflect changes over time.

The objectives of this study are to:

This study will increase our understanding of the difficulties and needs of the family carers in taking care of an ageing adult with ID by facilitating the development of appropriate intervention programmes and services to strengthen their caring capacity and empower them to continue with their caring roles.

The theoretical framework that will be generated from this study will be highly practical and useful in generating knowledge about factors that influence the caregiving processes, and tracking the caregiving journey at different time-points so that areas to implement practice changes can be clearly delineated. In this way, the theoretical framework is highly useful in guiding timely and appropriate interventions and project innovations to address the actual needs of family carers as they themselves are ageing and will need to continue to take care of their family members with ID in the community. Therefore, after the identification of the carers’ caring process for persons with ID, various interventions can be planned to address the changing needs of the carers and also the persons with ID at different points in the trajectory of the caring continuum.

With better support, carers can continue their care for the community-dwelling persons with mild or moderate ID for a longer period of time. This will not only benefit the persons with ID and their carers but also relieves the heavy load of the healthcare system in the provision of institutionalized care. In addition, the findings of this study can provide important information about the psychosocial and service support and needs for family carers of home- or community-residing persons with ID, and for the persons with ID. The needs and plans for caregiving established in this research can inform the current situation and future development of community support services and care policy of family-centred care for persons with ID.

The focus on only those with mild or moderate ID who are attending the sheltered workshops and the exclusion of family caregiving of those who have severe ID will be the limitations of this study. Therefore, the emerging theory may not be transferrable to those with severe ID or those who could not be employed by the sheltered workshops. Indeed, as the participants are interviewed once, identification of subtle changes in the caring needs of individual careers and the person with ID they look after have to be based on the participants’ ability to recall incidents and events that have happened at different points of time. More data sources and longitudinal data collection method can be considered to enrich the data and examine the changes in their health needs over time.

Planning for the continuation of care for an adult child with ID requires good physical and psychological health. For the ageing carers, their future health and the health of the family member they care for is full of uncertainties. Indeed, the health of either party can deteriorate sharply, which may have direct impact on the carers’ plan for continuation of care. It is possible that the participants may express their inability to anticipate their future plan for continuation of care or their inability to take care of their family member in the future and their plan is to seek social service for the family member. Therefore, various perspectives should be explored so that the data will have the potential to inform policies and practices about supporting families to minimize caregiver burden, and to give the individuals with intellectual disabilities a chance to live in the own communities.