Research on the effects of family care degree on stigma and psychosocial adaptation among the patients with Parkinson’s disease^†

A total of 246 patients with PD between October 2018 and April 2019 were selected by the convenient sampling method who met the inclusion and exclusion criteria.

Inclusion criteria are as follows: diagnosed with PD and the diagnostic standard is “China’s diagnostic standard for PD (2016)”⁸; >18 years old; informed consent; and willingness to participate in this study. Exclusion criteria are as follows: serious diseases of other systems, such as liver and kidney failure, advanced cancer and the like; a history of mental illness; serious communication difficulties; and cannot cooperate.

This study was conducted between September 2018 and April 2019 on patients with PD, who were admitted to Three-A hospital in Dalian city. The method of questionnaire was used for investigation in this study; these were unified questionnaires which ought to be filled truthfully. The patients were asked to fill out the questionnaire according to the patient’s perception of the true answer. If the patient was not able to fill himself due to reasons such as rest tremor, the researcher or his family members would request patient to answer of each item one by one. At the day of the recovery, a total of 260 questionnaires were distributed; of those, 246 questionnaires were recovered at an effective recovery rate of 94.6%.

Once all the data were collected, a database was set up. The analysis of database was performed by SPSS24.0 software (IBM Corporation, Armonk, New York, United States), including descriptive statistics analysis and independent sample t-test, which were used to explore the influence of family care on stigma and psychosocial adaptation. The independent sample t-test was applied to compare the stigma and psychosocial adaptation of PD patients with different levels of family care.

The study was approved by the Research Ethics Committee of The First Affiliated Hospital of Dalian Medical University, and all participants signed a statement of informed consent.

Variables were participants from Chronic disease insurance (56.5%), male (51.6%), 60–69 years old (37.4%), junior high school or below (48.4%), married (81.3%), living with his/her spouse (81.7%), personal monthly income <3000 yuan, and time of illness 1–3 years (37.8%) (Table 1).

Regarding family care degree, the total score of family care for patients with PD was 6.97 ± 2.46. The categorical data for this measure showed that the total score of family care for patients with PD was 6.97 ± 2.46, family function was good in 132 cases (53.7%), moderate barrier in 92 cases (37.4%), and severe barrier in 22 cases (8.9%). About half of the patients had well-functioning families.

The independent sample t-test showed that participants who reported high levels of family function scored lower on stigma (51.87 ± 10.54) than those who reported low levels of family function (59.11 ± 10.70), and this difference was statistically significant (P < 0.001) (Table 2).

The independent sample t-test showed that participants who reported high levels of family function scored higher on psychosocial adaptation (90.28 ± 13.50) than those who reported low levels of family function (77.30 ± 13.70), and this difference was statistically significant (P < 0.001) (Table 3).

The family care degree, considered as a psychological index, is the subjective attitude of patients toward family, which can reflect the true satisfaction of patients with family functions.¹² The results of this survey showed that the score of family care of PD patients was at the middle level (6.97 ± 2.46), and about 46.3% of the patients had family dysfunction. This reveals that the level of family care in patients with PD is not ideal, which is almost consistent with the domestic research results related to this study.^13,14 The reason may be that the burden and implication of PD is very high and it gets worse and worse as it progresses, which bring great psychological pressure to patients and their families.¹⁵ Therefore, this study found that the subjective sense of family happiness of PD patients was relatively decreased. It suggests that medical staff should pay greater attention to the impact of changes of family functions on patients while helping patients to treat physical diseases, and encourage patients to actively communicate with their families and express their inner thoughts so that the level of family care degree can be improved.

The stigma of PD is a feeling of shame and isolation.¹⁶ It results in decreased social participation, alienation from others or excessive attention to one’s own abnormalities caused by symptoms of patients with PD such as changes in body profile or structure, gradual loss of function, and language problems.¹⁷ Social harmony and keeping them informed regularly are the key to elderly people, and so for elderly, the most important affective relations occur at the family level.¹⁸ Sun et al.¹⁹ found that HIV/AIDS patients and its families live in a social environment of stigma and the perceived stigma was related to their family APGAR (OR = 0.650, P = 0.027). This study showed that participants who reported high levels of family function scored lower on stigma than those who reported low levels of family function, and this difference was statistically significant (P < 0.001). Such results are in line with the majority of the outcomes given in the literature on the subject, which clearly establish that better family function plays an important role in improving stigma of PD.²⁰ Patients with PD are often accompanied by complications and side effects of drugs. They require not only financial support from their families to guarantee the use of drugs but also the understanding and companionship of family members to help them in increasing their confidence in treatment and to reduce the pain caused by diseases. Therefore, improving family functions and increasing family members’ care are the effective measures to help patients to face stigma correctly. It is worthy of reference for medical staff.

Psychosocial adaptation of PD refers to the degree to which individuals are in harmony with social norms and the process of subjective action and cognition after suffering from the PD.²¹ In the clinical practice of patients with PD, it is not comprehensive to simply control the motor or non-motor symptoms of patients.²² Medical workers should also pay attention to the recovery of patients’ psychosocial functions, improve the social adaptability and psychological adaptation level of patients with PD, and promote the comprehensive recovery of patients. In the course of the patient’s illness, family members and caregivers bear a huge burden which can lead to burnout since the caregivers make a significant contribution to people with PD that include economic, social, and personal losses.²³ The results of this study proves that the better the family care, the better the psychosocial adaptation. The viewpoint of this research is basically consistent with Wu’s. Wu et al.²⁴ argued that a significant negative correlation existed between family function scores and the severity of depression and anxiety among potential donor candidates before liver transplantation. People with family dysfunction showed more depression and anxiety. In addition, Zhang²⁵ found that there was a negative correlation between family care and depression in postpartum depression patients (r = −0.638, P < 0.01). More than that, Liu²⁶ considered that perfect family function is the basis of social support system, an important external resource for patients to cope with diseases effectively, and an important part of patients’ social adaptability. Influenced by 5000 years of Chinese culture, most Chinese believe that only by building a harmonious family can make the family member be happy.²⁷ Long-term illness can cause patients to feel tired. The help of families can not only share the pressure of medical expenses but also play a supervisory role in patients’ disease prediction, medication program, and exercise. It can improve patients’ self-management and strengthen their confidence toward recovery. Therefore, the psychosocial adaptability of patients may be caused by family disharmony or family dysfunction. And the improvement of family function helps to improve the psychosocial adaptation of patients with PD. When solving the problem of patients’ psychosocial adaptation, the medical staff can start their treatment process from the aspect of family care.