Effectiveness of an online education intervention on stress and coping of family members after placing a relative with dementia into a residential care facility: protocol of a randomised controlled trial

Previous studies have found that when family caregiving cannot satisfy the care needs of a relative with dementia, family members may choose to place him/her into a residential care facility [1‐3]. Alzheimer’s Association has recently revealed that 42% of residents in residential care facilities and 48% of nursing home residents have Alzheimer’s or other dementias [4]. Residential care transition in fact is a stressful experience not only for persons with dementia but also for their family members. For persons with dementia, admission to a residential care facility indicates loss of their familiar surroundings and people [5], and thus may result in a worsening of behavioural and psychological symptoms of dementia (BPSD) [6]. For family members, residential care placement can to some extent reduce their direct care obligations [7, 8]; yet, it does not represent end of the caregiving process and family members’ stress will never be completely eliminated [9, 10]. Guilt, feeling of loss, and feeling of failure have been reported in family members after residential care placement [6, 9‐13]. Schulz et al. [12] even found that family members who have institutionalised a relative with dementia experienced as a high level of depressive symptoms and anxiety as that while they provided in-home caregiving.

The philosophy of family-centred care emphases that families are essential allies for quality and safety of health care [14], and health care professionals should dedicate efforts to maintain family members’ control when providing care services for an individual [15]. Over the past two decades, several interventional studies have been conducted to assist family members to cope with stressful situations after placing a relative with dementia into a residential care facility; however, the duration and focus of the interventions varied with each other [16‐21]. The Family Visit Education Programme (FVEP) in 1999 can be regarded as a pioneer study in this field [16]. This eight-week group-based education intervention was designed to teach primary family visitors on how to effectively communicate and interact with their relatives with dementia during visiting [16]. McCallion et al. [16] found that the FVEP could significantly reduce primary family visitors’ stress in caregiving and residents’ behavioural symptoms, depression, and irritability. Robison and colleagues [17] have also conducted an education intervention, Partners in Caregiving (PIC), for family members of nursing home residents with dementia, but focused on communication and cooperation between family members and facility staff. Results showed that after intervention residents’ behavioural symptoms were significantly reduced in the intervention group when compared with controls. But family members’ perceived hassles with staff and caregiving burden in the intervention group were not significantly different from that of the control group [17]. More recently, Paun et al. [18] designed another education intervention, Chronic Grief Management Intervention (CGMI) to deliver family members knowledge of dementia, skills in communication, conflict resolution, and hands-on care in the context of long-term care, and grief management skills. This 12-week group-based intervention also showed beneficial effects, with family members who received the intervention reporting significantly lower lever of grief and guilt than those in the control group [18].

Additionally, one psychoeducation intervention [19] and two psychosocial support interventions were also identified [20, 21]. Underpinned by a perspective of empowerment and the model of stress and coping, the 10-week Taking Care of Myself psychoeducation intervention employed group sessions to help daughter caregivers feel at ease with their relatives, express the point of views to health care staff, avoid emotional torment, deal with loss, call upon support network, and take care of themselves [19]. Ducharme et al. [19] found that this intervention was effective in reducing daughter caregivers’ stress appraisal and improving their use of coping strategies. With regard to the two psychosocial support interventions, the Family Intervention: Telephone Tracking-Nursing Home (FITT-NH) was a purely telephone-delivered intervention based on the stress and coping model. This three-month intervention aimed to identify and address the acute stressors (e.g. family-staff interaction, satisfaction with the facility, and guilt about the placement decision) of family members who were within two months of placing a relative with dementia into a nursing home through 10 telephone contacts [20]. In contrast, the Residential Care Transition Module (RCTM) was a multicomponent intervention including psychoeducation, promotion of communication, problem solving, patient behaviour management strategies, concrete goal planning, knowledge about treatments in the residential care facility, as well as ad hoc counselling [21]. Findings indicated that family members receiving the FITT-NH could significantly reduce their feelings of guilt and hassles with facility staff [20], and family members receiving the RCTM intervention reported significantly reduced levels of role overload and caregiving distress [21].

Although current evidence in this field is limited, it can be seen that providing family members with emotion management skills [18‐20], enhancing family members’ competence in communicating and interacting with residents [16, 18, 19, 21], teaching family members skills in building positive relationship with facility staff [19, 21], and/or teaching family members strategies to recognise and cope with new roles and ongoing problems after residential care placement [20, 21] can improve family members’ emotional distress (i.e. guilt, role overload, grief) [18, 20, 21], stress appraisal [19], and stress in caregiving [16, 21]. Additionally, improving family-resident communication and interaction or family-staff partnership is promising for reducing residents’ depression [16] and behavioural symptoms [16, 17]. China has the largest number of population with dementia worldwide, and more than half of nursing home residents are reported to be living with dementia [22]. However, no intervention studies to date are available for Chinese family members of people with dementia in residential care facilities. In order to design an intervention for this population, we have conducted a qualitative study in 17 Chinese family members whose relatives with dementia had been placed into residential care facilities to explore their stressors. Findings showed that Chinese family members experienced multiple stressors after placement. Firstly, Chinese family members were criticised as unfilial by people around and thus experienced a high level of guilt and stress after placement. This is mainly because that in the traditional Chinese culture of filial piety older people are supposed to be cared for by the younger generation at home rather than being placed into a residential care facility [23]. Moreover, the facility fees in China were generally high, which to some extent caused a financial burden for family members. Additionally, continuing caregiving at the residential care facilities has aroused a series of difficulties (e.g. communicating with relative with dementia, addressing behavioural problems, building harmonious relationship with facility staff) that created challenges and frustration for family members. Lastly, suboptimal care provided by the facilities also caused worries for family members. As suggested, people in Asian culture tend to adjust to stress with the aim of creating harmony between self and the environment, instead of removing the stressors or changing features of the environment in order to align with one’s needs [24]. In our qualitative study, we also found that Chinese family members were more likely to accept the reality rather than seeking information to resolve problems when faced with stressors.

With the government’s policy inducement, the number of residential care facilities in China has rapidly increased in recent years but the care quality in residential care facilities indeed are still in the developmental stages [25]. Most caregivers working in residential care facilities have insufficient knowledge and skills about dementia care and thus the care they provide is suboptimal [26, 27]. The expenses of living in a residential care facility are not covered by medical insurance in China [28]. Family members’ stress relating to suboptimal care in the facility and high facility fees may need to be resolved from the government level, such as providing standardized dementia care training for care providers and establishing a robust long-term care insurance system [28, 29]. For other identified stressors, we have designed an online education intervention to facilitate Chinese family members reappraise their situations and to enhance their skills in coping with stressful situations after placement. This study aims to evaluate the effectiveness of the online education intervention. The objectives are: (a) to evaluate whether the intervention can reduce stress and improve coping in Chinese family members compared to routine care; (b) to evaluate whether the intervention can reduce caregiving burden and increase care involvement in Chinese family members compared to routine care; and (c) to evaluate whether the intervention can indirectly reduce residents’ BPSD compared to routine care. We hypothesise that at post-intervention and six-week follow-up, family members in the intervention group will report lower level of stress, higher level of use of coping strategies, lower level of caregiving burden, higher level of involvement in their relative’s care, and residents in the intervention group will have lower level of BPSD, when compared to those in the control group.

Family members usually face challenges and stressors after institutionalising a relative with dementia, this study will evaluate an online education intervention for Chinese family members of residential care facility residents with dementia. This will have implications for nursing research and practice. Firstly, with a mixed methods experimental study design, an online education intervention has been developed based on the Chinese family members’ own perceptions and expectations after placing a relative with dementia into a residential care facility. This will provide evidence to health care professionals and researchers in designing and implementing more successful interventions for this group of population. Secondly, interventions to family members that aim to address their stressors may influence the extent they involve in their relative’s care and thus indirectly affect resident outcomes. This study will shed insight on the effectiveness of an education intervention in terms of both family members and residents with dementia. Thirdly, this study will be of great significance in promoting the implementation of family-centred care in practice especially in residential care, and improving family involvement in their relative’s care after residential care placement.

The results of this study will be presented at national and/or international conferences. Findings pertaining to this study will be submitted and published in peer reviewed scientific journals. If the results of this study demonstrated beneficial effects, the intervention will be disseminated to more local residential care facilities.