The Construction Of The Family Adjustment And Adapation Program For Caregivers Of Patients With Cleft Lip And/or Palate Focusing On "Family Function"

Objective: This study aims to understand the current situation and influencing factors of family function among caregivers of patients with cleft lip and/or palate,and to find out the key variables affecting family function.Next,to synthesize the evidence of key variables used the method of systematic review of systematic review.Additionally,to construct the family adjustment intervention program for caregivers of patients with cleft lip and/or palate fouscing on family function based on the above contents.Methods: Part Ⅰ: The caregivers of patients with cleft lip and/or palate who met the inclusion and exclusion criteria in the two cleft lip and palate treatment center were recruited from October 2019 to August 2020.The caregivers were investigated by qurstionnaires including demorgraphic and medical information,the Family Environment scale,Perceived Social Support scale,Herth’s Hope scale,Resilience scale-14,Parenting Stress Index Short Form,the Coping Health Inventory for Parents,Revised Life Orientation Test.Epidata 3.1 was used to establish the database and SPSS 20.0 to conduct statistical description,universial factor analysis and multiple regression analysis.Besides,Amos 23.0 WAS conducted to path analysis.Part Ⅱ: The literature of “parenting stress” and “social support” of families with chronic disease children were screened according to the standards of systematic review of systematic review.The methodological quality of the literature was evaluated using the evaluation tool of JBI,and the evidences were extracted and graded by JBI evidence pre-grading system(2014 Edition).Finally,the evidences of key variables were synthesized.Part Ⅲ: Based on the above outcomes,the research panel formed the first draft of intervention plan.The family adjustment intervention plan for caregivers of patients with cleft lip and/or palate focusing on family function was constructed via two rounds of expert consultation.Results: Part Ⅰ: A total of 248 subjects were included in sum.1.The scores of family function of caregivers of patients with cleft lip and/or palate were higher in conflict,moral-religious emphasis,control than the Chinese norm(P<0.05),and expressiveness,independence,achivement orientation,intellectual-cultural orientation,active-recreational orientation,organization were lower than the Chinese norm(P<0.05).There was no statistical difference in the score of cohesion between the two groups(P>0.05).2.The perceived social support of caregivers of patients with cleft lip and/or palate was at the medium level,of which family support dimension was the highest.The level of hope was moderete to high.The level of resilience was moderate.The parenting stress was above the medium level,of which parenting sadness was highest.The score of coping style was at the medium leve,and the most common coping style was“maintaining family unity,cooperation and optimism”,and the least used was“understanding the disease through consulting medical personnel and communicating with other parents”.Optimism was at a moderate level.3.Multiple linear regression of family function of caregivers of patients with cleft lip and/or palate showed the following results : 1)In cohesion dimension,the level of caregivers’ perceived social support(family support dimension and other support dimension),parenting stress(parenting and sorrow dimension)and the coping health inventory for parents(keep family unity,cooperation and optimism dimension and seeking social support,maintain stable self-esteem and psychological dimensions)were brought into the regression equation.2)In expressiveness dimension,caregivers’ perceived social support(family support dimension),parenting stress(parenting distress dimension)and the coping health inventory for parents(communication to medical staff and other parents dimension)came into the regression equation.3)In conflict dimensions,the caregivers’ gender,income monthly per person,caregivers’ perceived social support(family support and other support dimensions)and parenting stress(parenting distress dimension)entered into the regression equation.4)In independence dimension,the caregivers’ parenting stress level(parent-child interaction disorder dimension)and caregivers’ coping style(seeking social support,maintaining self-esteem and psychological stability dimension)entered into the regression equation.5)In achivement orientation dimension,the level of caregivers’ resilience(personal ability dimension)entered the regression equation.6)In intellectual-cultural orientation dimension,mother’s age,mother’s working state,caregiver’s parenting stress level(parenting distress dimension),parents’ coping style(seeking social support,maintaining self-esteem and psychological stability dimension)and optimism level entered the regression equation.7)In active-recreational orientation dimension,the mother’s work status,mother’s religious belief,understanding of social support(friends support dimension and other support dimension)and coping style(seeking social support,maintaining self-esteem and psychological stability dimension)entered the regression equation.8)In moral-religious emphasis dimension,the patient’s gender,family per capita monthly income,caregivers’ parenting stress level(parenting distress dimension)and coping style(maintaining family unity,cooperation and optimistic attitude dimension)brought the regression equation.9)In organizational dimension,patients’ age,mother’s working status,family per capita monthly income,caregiver’s parenting stress level(parenting distress dimension)and coping style(maintaining family unity,cooperation and optimism dimension)entered the regression equation.10)In control dimensions,the per capita monthly income of the family,coping style of caregivers(maintaining family unity,cooperation and optimism)and optimism entered the regression equation.4.The results of path analysis showed that parenting stress(negative)and perceived social(possitive)support could affect on the family function of caregivers of patients with cleft lip and/or palate directly.Whereas,coping style,hope,resilience and optimism could affect on family function through parenting stress and perceived social support indirectly.Part Ⅱ: The theme of “parenting stress” included 34 pieces of literature with good quality,extracting 28 items of evidence from 6 aspects.A total of 15 pieces of literature were included in the theme of “social support”,and the quality of the documents was good,getting 25 items of evidence in 5 aspects.Finally,the evidence with seven aspects were synthesized: the relevant knowledge of “parenting stress”,the source of “social support” the form of intervention,the timing of intervention,the composition of intervention team,and the content of intervention.Part Ⅲ: the final version of the intervention plan consisted of three modules and 16 themes.The three modules were(1)disease-related knowledge understanding,(2)social support exploration and utilization,and(3)psychological and behavioral training.Conclusion: 1.To caregivers of cleft lip and/or palate: The parenting stress is the influencing factor of family “cohesion”,“expressiveness”,“conflict”,“independence”,“intellectual-cultural orientation”,“moral-religious emphasis” and “organization”.Perceived social support is the influencing factor of family “cohesion”,“expressiveness”,“conflict”,“active-recreational orientation” and “moral-religious emphasis”.Coping style is the influencing factor of family “cohesion”,“expressiveness”,“independence”,“intellectual-cultural orientation”,“entertainment”,“moral-religious emphasis”,“organization” and “control”.Resilience is the influencing factor of family “achivement orientation”.Optimism is the influencing factor of family “intellectual-cultural orientation” and “control”.The gender of patients is the influencing factor of “conflict”and “moral-religious emphasis”.The age of patients is the influencing factor of family“organization”.Mother’s age is the influencing factor of family “intellectual-cultural orientation”.Mother’s religious belief is the influencing factor “active-recreational orientation” of family.Mother’s working state is the influencing factor of family“intellectual-cultural orientation”,“organization” and “organization”.The family income monthly income is the influencing factor of family “conflict”,“independence”,“intellectual-cultural orientation”,“moral-religious emphasis”,“organization” and“control”.2.Parenting stress and social support are variables that directly affect the family function of caregivers of patients with cleft lip and/or palate,and they are the key variables of intervention.3.Understanding disease-related knowledge is helpful to alleviate the parenting stress.Communication with other caregivers is one of the important sources of social support.Helping caregivers explore social support actively is one of the contents of following intervention.Online intervention and group intervention are effective forms of intervention.Early intervention is recommonded.Interventions should be targeted at both fathers and mothers,and it is more effective if children can participate.It is necessary to build a multidisciplinary intervention team.Mindfulness intervention and acceptance commitment method are effective intervention projects.4.The formulation process and content of family adjustment intervention program for caregivers of patients with cleft lip and/or palate based on evidence is scientific.The program can provide reference for medical staff,and is worthy of clinical application.