Bibliotherapy for Improving Caregiving Appraisal Among Informal Caregivers of People With Dementia: A Pilot RCT

Bibliotherapy for Improving Caregiving Appraisal Among Informal Caregivers of People With Dementia: A Pilot RCT

Bibliotherapy for Improving Caregiving Appraisal Among Informal Caregivers of People With Dementia: A Pilot Randomized Controlled Trial

This is a 8-week pilot randomized controlled trial utilizing bibliotherapy compared with usual care to investigate the feasibility and acceptability of bibliotherapy among informal caregivers of people with dementia in China, and preliminarily examine the efficacy on improving caregiving appraisal.

Background: China is one of the countries with the highest number of people with dementia (PWD), while over 90% of PWD are cared by informal caregivers in the community. Informal caregivers are found to have higher level of stress, and lower level of well-being than non-caregivers. However, positive outcomes of caregiving have also been noted. Caregiving appraisal is caregivers' cognitive evaluation of potential caregiving stressors and the efficacy of their coping efforts related to caregiving experience. Based on Lawton's Caregiving Appraisal and Psychological Well-being Model, caregiving appraisal is an important factor that leads to the positive or negative well-being outcomes of caregivers. Addressing the caregiving appraisal of informal caregiver may be able to help in promoting the caregiver well-being and delay premature institutionalization. Intervention for improving dementia caregiving appraisal is still scarce, especially in China. Bibliotherapy is the process of learning from high-quality written materials for therapeutic benefits, it has been proved to be effective in improving caregiving appraisal of informal caregivers of people with psychosis and depression, its effect on dementia caregivers is unsure. Objectives: There are two research objectives in this study: (1) To determine the feasibility and acceptability of the evidence-based bibliotherapy protocol among informal caregivers of PWD in China. (2) To preliminarily explore the efficacy of bibliotherapy on improving caregiving appraisal. Methods: Sixty participants will be recruited from Zhengzhou, China, and will be randomly allocated to either the intervention group or usual care group. The feasibility of the intervention will be explored in terms of the ease of participant recruitment, attendance rate and the attrition rate. The acceptability will be explored by interviews of participants in the intervention group at post-intervention. The Chinese version of Caregiving Appraisal Scale, the Chinese version of Ways of Coping Questionnaire, the Chinese version of Positive Aspects of Caregiving Scale, the Chinese version of Ryff's Psychological Well-being Scale, Alzheimer's Disease Knowledge Scale and Dementia Attitude Scale will be used to measure caregiving appraisal, coping, positive aspects of caregiving, psychological well-being, knowledge of dementia and attitude toward dementia of informal caregivers of PWD respectively. Descriptive statistics, Chi-square test, Mann Whitney U test, and independent t-test will be used to describe the participants' characteristics and compare the difference between groups at baseline. GEE will be used to examine the intervention efficacy.

Participants will receive bibliotherapy without withdrawing from the usual care. They will be asked to read the designated manual (consists of eight chapters) within a recommended period of time (over 8 weeks). Weekly telephone coaching will also be provided to figure out participants understanding, find out the unsolved problems and guide them for finding out the solution by themselves. An orientation will be organized before the first session. Two booster sessions will be organized during the study.

The participants in the control group will only receive usual care provided by the community health professionals.

Bibliotherapy is the use of reading materials for therapeutic benefits. In this study, an evidence-based modified manual will be used as the reading material. The manual adopts the self-directed problem-solving approach to dementia caregiving, examples of how other caregivers solve the specific problem for each chapter is included in the corresponding chapter. Bibliotherapy also involves guided learning by reading written information, enabling caregivers to solve their caregiving problems "step-by-step", so telephone coach is designed to figure out participants understanding, find out the unsolved problems and guide them for finding out the solution by themselves.

To be measured with the Chinese version of Caregiving Appraisal Scale (CAS). The Chinese version of CAS includes 26 items, divided into 4 subscales: caregiving burden, caregiving satisfaction, caregiving mastery, and caregiving impact. This is a 5 point Likert scale (1 = disagree a lot to 5 = agree a lot). The total score ranges from 26 to 130, with higher scores indicate more positive caregiving appraisal. The Cronbach's α for each subscale was 0.68~0.87.

To be measured with the Chinese version of Ways of Coping Questionnaire. This questionnaire includes 20 items, divided into 2 subscales: the active coping subscale and the passive coping subscale. The passive coping subcale was recoded. The total score ranges from 0-60, higher score indicates more positive coping. It is a 4 point Likert scale (0 = never to 3 = often). The Cronbach's α was 0.90, αs for the two subscales were 0.89 and 0.78.

To be measured with the shorter Chinese version for Ryff's Psychological Well-being Scale. This scale includes 18 items, and is divided into 6 subscales: positive relations with others, autonomy, environmental mastery, personal growth, purpose in life and self-acceptance. This scale is a Likert 6 point scale, with 1 = strongly disagree to 6 = totally agree, higher scores indicate better psychological well-being. The total score ranges from 6-108. The scale has been tested in middle-aged and older people, the Cronbach's α was 0.92 for the total scale, and at least 0.60 for each subscale.

To be measured with the Chinese version of Positive Aspects of Caregiving (C-PAC) Scale. It is a Likert 5 point scale ranging from 1 (strongly disagree) to 5 (strongly agree) regarding the extent to which providing care to their relatives with dementia had enabled them "feel important", "feel appreciated" etc. The scale has 11 items, divided into two subscales: enriching life and affirming self. The total score ranges from 5-55. The Cronbach's α was 0.89 for the total scale, the αs for enriching life and affirming self subscales were 0.85 and 0.84 respectively.

To be measured with the Chinese version of Alzheimer's Disease Knowledge Scale. This scale has 30 items, with "true" or "false" choices for each item. The total score ranges from 0-30. Higher score indicates more knowledgement about dementia. The Cronbach's a was 0.785.

To be measured with the Chinese version of Dementia Attitude Scale. This is a 20-item Likert 7 point scale (1=strongly disagree, 7=strongly agree). The total score ranges from 20-140, higher scores indicate more positive attitude toward dementia. The Cronbach's α was 0.818.

Inclusion Criteria: Caregiver who provides regular care to a person with early to moderate level of any type of medical diagnosis of dementia (PWD) for at least 5 hours per week for at least 6 months; Aged 18 or above; Not paid for the care provided; Assist with at least one of PWD's daily activities; Be able to read; Can be contacted by phone. Exclusion Criteria: Caregivers with unstable physical or mental conditions; Those with cognitive impairment; Those involved in another interventional study.

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