Loneliness,social support and family function of people living with HIV/AIDS in Anhui rural area,China

Abstract

The main purpose of this study was to investigate how loneliness was associated with social support and family function among people living with HIV/AIDS (PLWHA) in an HIV-stricken area of China. Two hundred and nineteen PLWHA were surveyed using the UCLA (University of California at Los Angeles)-Loneliness Scale, the Social Support Rate Scale and the Family APGAR (Adaptability, Partnership, Growth, Affection and Resolve) Index. The results indicated that the majority (84.5%) of PLWHA had moderate to high levels of loneliness, with a mean score of 47.62 and a standardized score of 59.53. The level of loneliness was significantly different in subjects' occupations, but not in other sociodemographic variables. Social support, family function and all dimensions except utilizations of support were significantly negatively associated with loneliness. Multiple regression revealed that less social support and poor family function were associated with more loneliness. In conclusion, loneliness prevails among PLWHA. It may limit PLWHA's ability or access to social relationship. These findings support the hypothesis that if PLWHA are better supported and cared for, their negative psychosocial consequences might be prevented or at least reduced.

Keywords

loneliness people living with HIV/AIDS social support family function China

INTRODUCTION

China is facing a serious public health threat caused by the rapidly expanding HIV epidemic. It is projected that the number of people living with HIV/AIDS (PLWHA) in China will exceed 10 million by 2010 if efforts to control HIV are not increased.¹ As a vulnerable population, PLWHA experience problems associated with HIV infection, including pain of the disease, discrimination by society and lack of resources to care for and treat their illness. In addition, PLWHA have to strive to cope with psychosocial problems such as loneliness, social isolation and so on. All of these psychosocial and physical limitations can increase PLWHA's need for holistic care, including attention to the person's environment and receiving support from family and friends. We hypothesize that if PLWHA are better supported and cared for, these negative psychosocial consequences might be prevented or at least reduced.

Researchers in other countries have conducted a considerable number of studies on the variables related to the psychological status of different populations of PLWHA;^2–6 much of this research is relevant to coping with HIV and AIDS. However, most of the previous studies were conducted in Western populations with few studies performed in developing countries. The purpose of this study was to examine the loneliness in Chinese PLWHA and to investigate the relationships between loneliness and demographic characteristics, social support and family function.

MATERIALS AND METHODS

Procedures and participants

Participants were recruited from 10 villages in JingJiu Town, Anhui Province. Eligibility criteria were as follows: (1) residing in one of the 10 villages; (2) having HIV infection diagnosed by the provincial Center for Disease Control; (3) willing to provide oral informed consent; (4) being aged 18 years or older; and (5) having no diagnosed psychiatric disorder. A total of 219 people who met the eligibility criteria were informed about the study and invited to participate, and all expressed agreement to participate. Literate people filled out the questionnaire by themselves, whereas illiterate people were interviewed by researchers who then wrote the answers in the questionnaire on their behalf. It took about 30 minutes to complete the questionnaire for each subject.

Permission to conduct this study was obtained from Anhui Medical University's ethical committee, and verbal consent was obtained from each participant. Patients were informed of the purpose of the research. Participants were assured of their right of refusal to participate or to withdraw from the study at any time. Anonymity and confidentiality of participants were assured.

Instruments

Questions regarding social demographics were designed by our research team, including age, gender, occupation, marital status, economic condition, education level and family size.

UCLA (University of California at Los Angeles)-Loneliness Scale

This scale has been developed to determine the perception of loneliness degree.⁷ It consists of 20 questions that are between 1 and 4 scored (the total point interval is between 20 and 80). Higher points indicate more intense feelings of loneliness. The validity and reliability of the Chinese version has been evaluated.^8,9 In this study, the alpha coefficient was 0.89 for UCLA-Loneliness Scale (UCLA-LS).

Social Support Rate Scale

The Social Support Rate Scale (SSRS) is a quantitative instrument, revised by Shui-yuan Xiao according to facts of China in 1990, which entails measuring the number of an individual's social ties, with higher scores indicating more social support and the diversity of social networks (e.g. family, friend, neighbour, organization). The scores for the scale range from 12 to 65, with higher scores indicating more social support. It is divided into three dimensions: objective support, subjective support and utilizations of support. The validity and reliability of the Chinese version of the SSRS have been confirmed.¹⁰ This instrument had an internal consistency of alpha ranging from 0.81 to 0.92 for this study.

Family APGAR Index (APGAR)

Family function was measured by the APGAR (Adaptability, Partnership, Growth, Affection and Resolve) scale, developed by Smilkstein.¹¹ This is a five-item and three-point scale, ranging from ‘hardly ever’ (0) to ‘almost always’ (2). The APGAR contains five domains, e.g. adaptation, partnership, growth, affection and resolve domains, with well-established validity and reliability.¹² The Chinese version of APGAR has been used widely in China, with satisfactory validity and reliability.¹³ In this study, the alpha coefficient was 0.90 for APGAR.

Statistical analysis

SPSS 13.0 (Statistical Package for the Social Sciences, SPSS Inc, Chicago, IL, USA) was used for data analysis. Statistical methods included frequency, mean, standard deviation, standardized score [(mean score/the highest total possible score) × 100], one-way ANOVA, Pearson's correlation and stepwise multivariable regression. A P value less than 0.05 was considered statistically significant.

RESULTS

Descriptive statistics

A total of 219 subjects received an interview. The mean age was 42, ranging from 26 to 68 years. The characteristics of social demographics are presented in Table 1. Participants' scores on measures of loneliness (UCLA-LS), social support (SSRS) and family function (APGAR) are summarized in Table 2.

Table 1

Distribution and ANOVA analysis (or independent t-test) of sociodemographic data on loneliness (n = 219)

Variables	No.	Mean ± SD	F value or t value	P value
Sex			− 1.73	0.09
Male	106	46.24 ± 12.36
Female	113	48.91 ± 10.56
Age (years)			0.07	0.98
25–34	44	47.41 ± 9.28
35–44	106	47.49 ± 11.48
45–54	47	47.60 ± 11.87
55–68	22	48.68 ± 15.23
Occupation			2.36	0.02
Farmer	196	48.24 ± 11.43
Other	23	42.30 ± 11.16
Education level			0.26	0.77
Illiterate	112	47.16 ± 11.63
Primary school	69	48.42 ± 10.75
Middle school and above	38	47.50 ± 12.73
Marital status			1.53	0.22
Unmarried	5	56.20 ± 10.94
Married	179	47.57 ± 11.15
Divorced or widowed	35	46.63 ± 13.20
Family incomes per capita/1 year (yuan)			0.20	0.90
< 1000	56	46.95 ± 11.46
1000–2000	51	48.04 ± 11.28
2000–3000	85	48.11 ± 11.71
> 3000	27	46.67 ± 12.00
Family size (individuals live together)			1.10	0.33
≤ 2	22	50.68 ± 14.03
3–4	114	47.75 ± 10.83
≥ 5	83	46.61 ± 11.71

Table 2

Distribution of loneliness, social support and family function (n = 219)

Score	Mean ± SD	Standardized score
UCLA-LS	47.62 ± 11.52	59.53
SSRS (total score)	34.86 ± 7.74	52.82
Objective support	8.96 ± 3.00	40.73
Subjective support	20.25 ± 4.91	63.28
Utilizations of support	5.65 ± 2.42	47.08
APGAR (total score)	7.10 ± 3.07	71.00
Adaptation	1.48 ± 0.69	74.00
Partnership	1.35 ± 0.72	67.50
Growth	1.37 ± 0.75	68.50
Affection	1.41 ± 0.75	70.50
Resolve	1.49 ± 0.69	74.50

Note: UCLA-LS = UCLA-Loneliness Scale; SSRS = Social Support Rate Scale; APGAR = Family APGAR (Adaptability, Partnership, Growth, Affection and Resolve) Index; Standardized score = (mean score/the highest total possible score) × 100

PLWHA who were farmers scored higher on loneliness than others with other occupations. Loneliness did not show statistical differences in sex, age, marital status, economic condition, education level and family size. The standardized score of loneliness was 59.53, indicating a high level of loneliness. Based on Perry's¹⁴ loneliness classification scheme, 98 of the 219 (44.7%) patients indicated a high or moderately high level of loneliness and the others (121, 55.3%) reported a moderate or low level. The distribution of social support and family function is shown in Table 2. Subjects reported a highest score on subjective support and a lowest score on objective support. PLWHA had low levels of partnership and growth. Adaptation, affection and resolve were only at medium levels.

Relationship among loneliness, social support and family function

Overall social support and family function had significantly negative relationships with loneliness (r = −0.41, P < 0.01 versus r = −0.30, P < 0.01). Loneliness was negatively associated with objective support (r = −0.31, P < 0.01), subjective support (r = −0.39, P < 0.01), adaptation (r = −0.31, P < 0.01), partnership (r = −0.28, P < 0.01), growth (r = −0.19, P < 0.01), affection (r = −0.21, P < 0.01) and resolve (r = −0.29, P < 0.01). On the other hand, utilizations of support (r = −0.12, P > 0.05) had no significant relationship with loneliness (Table 3).

Table 3

Correlation of loneliness, social support and family function (n = 219)

		Social support					Family function
		SSRS	OS	SS	US	APGAR	Adaptation	Partnership	Growth	Affection	Resolve
UCLA-LS	r	− 0.41	− 0.31	− 0.39	− 0.12	− 0.30	− 0.31	− 0.28	− 0.19	− 0.21	− 0.29
	P	0.000	0.000	0.000	0.073	0.000	0.000	0.000	0.004	0.002	0.000

Note: UCLA-LS = UCLA-Loneliness Scale; SSRS = Social Support Rate Scale; OS = objective support; SS = subjective support; US = utilizations of support; APGAR = Family APGAR (Adaptability, Partnership, Growth, Affection and Resolve) Index

Stepwise multiple regression

Multiple regression analysis showed that a higher UCLA-LS score was clearly associated with worse family adaptation (β = −3.25, P = 0.004) and lower subjective support (β = −0.47, P = 0.000). Compared with other occupations, farmers were more likely to have loneliness problems as indicated by higher UCLA-LS scores. Other factors were not statistically significantly associated with loneliness. These variables explained 21% of the total variance of loneliness. The overall model fit statistic (adjusted R ²) was 0.20 (F = 19.05; P < 0.001). Table 4 lists the results for the full regression model.

Table 4

Stepwise multiple linear regression analysis of loneliness (n = 219)

Variables	B	SE	Beta	T value	P value
Constant	74.42	3.93		18.95	0.000
Subjective support	−0.47	0.10	−0.31	−4.71	0.000
Family adaptation	−3.25	1.01	−0.20	−2.94	0.004
Occupation	−5.13	2.30	−0.14	−2.23	0.027
R ²	0.21
Adjusted R ²	0.20
F value	19.05				0.000

DISCUSSION

Loneliness has been studied in groups of hospitalized patients, prisoners, and residential and nursing home residents,¹⁵ college students,^16–18 well elderly who were living at home,¹⁹ blind veterans²⁰ and the hospitalized dying.²¹ However, few studies regarding loneliness in Chinese PLWHA have been reported. This study was conducted to examine the loneliness, and the relationships between loneliness and demographic characteristics, social support and family function in Chinese PLWHA. Previous studies have indicated that PLWHA's psychological status was lower than that of the population average.^22–24 This situation was strongly supported by findings of the current study, which showed that 84.5% of PLWHA have a moderate to high level of loneliness. The standardized score of loneliness in this study is high. The mean scores on the loneliness measure for PLWHA were even higher than the result (36.4) found in a study of patients with cancer.¹⁴

In this study, the standardized scores of overall social support, objective support, subjective supportand utilizations of support were 52.82, 40.73, 63.28 and 47.08, respectively; subjective support had the highest score. The results are higher than that of Li et al.'s²⁵ research in PLWHA in China, which found that standardized scores of overall social support, objective support, subjective support and utilizations of support were 48.52, 34.45, 59.97 and 43.83, respectively; objective support provided the least social support, while subjective support provided the most. This may be due to differences in the demographic characteristics of the populations studied, data collection techniques and duration of data collection. Li et al. ²⁵ studied 85 PLWHA from several different geographic areas and occupations, with an average age of 45 years and an educational level lower than the PLWHA in this study. By comparison, all of the participants in this study were 89.50% farmers and other occupations from the same highly HIV-infected rural area of China. Furthermore, the participants in our study had relatively higher levels of education, an average of 42 years, and migrated to a city for a temporary job and thus may have received adequate information regarding HIV/AIDS. These factors may have affected the social support of our study population.

In China, a strong family orientation has been a cornerstone of family practice since its emergence in the late 1960s,^26–29 and is also important for PLWHA. The family APGAR was introduced by Gabriel Smilkstein in 1978 to assess a family member's perception of family functioning by examining his or her satisfaction with family relationships.¹¹ It draws its name from a five-item measure of perceived family support in the domains of adaptation, partnership, growth, affection and resolve. The statements focus on the emotional, communicative and social interactive relationships between the respondent and his or her family: for example, ‘I find that my family accepts my wishes to take on new activities or make changes in my lifestyle’. The scale was used previously in some studies.^30–32 However, this study indicated that PLWHA had high standardized scores of family function, especially resolve (Table 2), and it was not surprising. Chinese families tend to take responsibility for their sick family members and relatives – a custom that often differs from what is practised in many Western countries.³³ Also, the personalities of the participants in this study may have been a beneficial factor in enhancing their family function. As rural farmers, they demonstrated simple, unsophisticated, honest and industrious behaviour, had confidence while interacting with family members, and had active interactions and collegiality with one another.

The results of multiple regression indicated that subjective support, adaptation and occupation were statistically significantly associated with loneliness. Objective support, utilizations of support, family partnership, growth, affection and resolve were not significantly associated with loneliness. More social support and better family function might decrease loneliness in PLWHA. These findings support our hypothesis that if PLWHA are better supported and cared for, their negative psychosocial consequences might be prevented or at least reduced. We suggest that interventions or activities that enhance social support and family function would prevent or decrease loneliness in PLWHA.

In summary, the results generated from this study may act as a reference for related health-care professionals, such as administrators or policy makers, to understand the loneliness and related factors among PLWHA in China. All health providers should improve PLWHA's care through intervention that addresses the alterable factors: social support, family function and so on. Our results confirm the findings of related studies that found a negative association between social support and psychological stress.^34,35

Several limitations of this study should be noted. The patient sample was from only one county in the east part of China, where the primary transmission of HIV/AIDS was through unsafe plasma donation. Thus, the findings may not be representative of PLWHA in other geographic areas within the country or of those infected through another route of transmission. Also, the low literacy level of the study population might mislead participants who misunderstood the questions and/or responded inaccurately. Third, cross-sectional studies cannot establish the direction of an association (cause and effect).^36,37 Therefore, further longitudinal studies are necessary to determine the predictors of loneliness and its influential factors among this population and other populations in China.

Footnotes

ACKNOWLEDGEMENTS

The present study was supported by Grants for Scientific Research of BSKY (xj2004007) from Anhui Medical University.

References

Portsmouth

, Stebbing

, Keyi

, Jianping

, Guohua

. HIV and AIDS in the People's Republic of China: a collaborative review. Int J STD AIDS 2003;14:757–61

Murphy

, Moscicki

, Vermund

, Muenz

. Psychological distress among HIV(1) adolescents in the REACH study: effects of life stress, social support, and coping. The Adolescent Medicine HIV/AIDS Research Network. J Adolesc Health 2000;27:391–8

Turner-Cobb

, Gore-Felton

, Marouf

, Coping, social support, and attachment style as psychosocial correlates of adjustment in men and women with HIV/AIDS. J Behav Med 2002;25:337–53

Catz

, Gore-Felton

, McClure

. Psychological distress among minority and low-income women living with HIV. Behav Med 2002;28:53–60

Farber

, Mirsalimi

, Williams

, McDaniel

. Meaning of illness and psychological adjustment to HIV/AIDS. Psychosomatics 2003;44:485–91

Hsiung

, Thomas

. Coping strategies of people with HIV/AIDS in negative health care experiences. AIDS Care 2001;13:749–62

Russell

, Peplau

, Cutrona

. The revised UCLA Loneliness Scale: concurrent and distriminant validity evidence. J Pers Soc Psychol 1980;39:472–80

Ping

. UCLA-Loneliness Scale. Chin Ment Health J (in Chinese) 1993;7(Suppl):227–30

Deng-feng

. Reliability and Validity of the Loneliness Scale. Chin J Clin Psychol (in Chinese) 1995;3:23–5

10.

Shui-yuan

. The social support rate scale. Chin J Psychol (in Chinese) 1993;7(Suppl):42–6

11.

Smilkstein

. The family APGAR: a proposal for a family function test and its use by physicians. J Fam Pract 1978;6:1231–9

12.

Smilkstein

, Ashworth

, Montano

. Validity and reliability of the family APGAR as a test of family function. J Fam Pract 1982;15:303–11

13.

Fan

, Guang

, Song-nuan

, Tian-lun

, Zhi-qiang

. A Study on Validity and Reliability of the amily APGAR. Chin Public Health (in Chinese) 1999;15:987–8

14.

Perry

. Loneliness and coping among tertiary level adult cancer patients in the home. Cancer Nurs 1990;13:293–302

15.

Francis

. Loneliness: the syndrome. Issues Ment Health Nurs 1981;3:1–5

16.

Jones

, Hobbs

, Hockenbury

. Loneliness and social skill deficits. J Pers Soc Psychol 1982;42:682–9

17.

Mahon

. The relationship of self-disclosure, interpersonal dependency, and life changes to loneliness in young adults. Nurs Res 1982;31:343–7

18.

Wheeler

, Reis

, Nezlek

. Loneliness, social interaction, and sex roles. J Pers Soc Psychol 1983;45:943–53

19.

Rook

. The negative side of social interaction: impact on psychological well-being. J Pers Soc Psychol 1984;46:1097–1108

20.

Evans

, Werkhoven

, Fox

. Treatment of social isolation and loneliness in a sample of visually impaired elderly persons. Psychol Rep 1982;51:103–8

21.

Zack

. Loneliness: a concept relevant to the care of dying persons. Nurs Clin North Am 1985;20:403–14

22.

Sun

, Zhang

, Fu

. Psychological status, coping, and social support of people living with HIV/AIDS in central China. Public Health Nurs 2007;24:132–40

23.

Chen

, Zhou

, Wen

, Effect of mental health and psychological factors in individuals with HIV/AIDS. Chin Mental Health J (in Chinese) 2004;18:850–3

24.

Zhang

, Wu

, Zhang

, Zhou

, He

, Qiu

. Investigation of psychological status of patients with HIV/AIDS. Public Health Prev Med (in Chinese) 2005;16:24–5

25.

, Yi-lin

, Dong-qing

, Xiang-yang

. Investigation on quality of life and social support among people with HIV/AIDS. Chin J Public Health (in Chinese) 2006;22:1307–8

26.

Carmichael

. The family in medicine, process or entity? J Fam Pract 1976;3:562–3

27.

Geyman

. The family as the object of care in family practice. J Fam Pract 1977;5:571–5

28.

Curry

. The family as our patient. J Fam Pract 1974;1:70–1

29.

Medalie

. A Family-oriented Approach in Primary Care. Boston, MA: Little, Brown, and Co., 1976

30.

Mengel

. The use of the family APGAR in screening for family dysfunction in a family practice center. J Fam Pract 1987;24:394–8

31.

Bluestein

, Rutledge

. Family relationships and depressive symptom preceding induced abortion. Fam Pract Res J 1993;13:149–56

32.

Clover

, Abell

, Becker

, Crawford

, Ramsey

Jr. Family functioning and stress as predictors of influenza B infection. J Fam Pract 1989;28:535–9

33.

Yang

, Chen

, Kuo

, Wang

. Quality of life and related factors for people living with HIV/AIDS in Northern Taiwan. J Nurs Res 2003;11:217–26

34.

Murphy

, Moscicki

, Vermund

, Muenz

. Psychological distress among HIV(+) adolescents in the REACH study: effects of life stress, social support, and coping. The Adolescent Medicine HIV/AIDS Research Network. J Adolesc Health 2000;27:391–8

35.

Turner-Cobb

, Gore-Felton

, Marouf

, Coping, social support, and attachment style as psychosocial correlates of adjustment in men and women with HIV/AIDS. J Behav Med 2002;25:337–53

36.

Bowling

. Research Methods in Health: Investigating Health and Health Services. Buckingham, Philadelphia: Open University Press, 1997

37.

Grady

, Wallston

. Research in Health Care Settings. Thousand Oaks, CA: Sage Publications, 1988