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Table of Contents
Year : 2022  |  Volume : 19  |  Issue : 2  |  Page : 125-130

Needs of patients with opioid dependence: Are the perspectives of substance use disorder – Patients and their family caregivers similar?

1 Nursing Officer, Dr. BRAIRCH, All India Institute of Medical Sciences, New Delhi, India
2 Associate Professor, College of Nursing, All India Institute of Medical Sciences, New Delhi, India
3 Additional Professor, Department of Psychiatry & NDDTC, All India Institute of Medical Sciences, New Delhi, India

Date of Submission30-Oct-2021
Date of Decision30-Jan-2022
Date of Acceptance31-Jan-2022
Date of Web Publication27-Dec-2022

Correspondence Address:
Dr. Denny Mariam Oomen
Dr. BRAIRCH, All India Institute of Medical Sciences, New Delhi - 110 029
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Source of Support: None, Conflict of Interest: None

DOI: 10.4103/iopn.iopn_87_21

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Context: There are more than ten thousand opioid-dependent patients visiting the study setting annually, depicting the serious public health issue associated with opioid use. The upheaval in all phases of life of a patient necessitates active involvement of both patient and caregiver. The importance of need assessment of patient by patients themselves and their caregivers need to be separately assessed to provide holistic care to patients. Aim: The aim of the study was to assess the needs of patients with opioid dependence syndrome as perceived by patients themselves and their family caregivers. Setting and Design: A comparative cross-sectional study conducted in a drug dependence treatment facility in India. Subjects and Methods: The needs of 105 opioid-dependent patients perceived by patients themselves and their family caregivers were assessed using Camberwell Assessment of Need Short Appraisal Schedule. Results: The most common unmet needs of patients as rated by patients themselves were physical health, money, and company. The most common unmet needs of patients rated by caregivers were money, looking after home and daytime activities. The agreement of needs of patient was poor in domains such as self-care (k = 0.17), looking after home (k = 0.16), company (k = 0.13), physical health (k = 0.10), money (k = 0.09), and psychological distress (k = 0.06). Conclusion: Addressing the needs of patients with opioid dependence might help in developing a more holistic management plan which will improve treatment outcomes. Nurses should be active part of communication system and fill the gap existing in the needs of patients.

Keywords: Caregivers, need-perception, opioid-dependent syndrome, patients

How to cite this article:
Oomen DM, Gupta S, Sarkar S, Devi Y S. Needs of patients with opioid dependence: Are the perspectives of substance use disorder – Patients and their family caregivers similar?. Indian J Psy Nsg 2022;19:125-30

How to cite this URL:
Oomen DM, Gupta S, Sarkar S, Devi Y S. Needs of patients with opioid dependence: Are the perspectives of substance use disorder – Patients and their family caregivers similar?. Indian J Psy Nsg [serial online] 2022 [cited 2023 May 31];19:125-30. Available from: https://www.ijpn.in/text.asp?2022/19/2/125/365477

  Introduction Top

Opioid dependence has become a clinical concern with a gradual increase in the number of opioid users across the world over the last few decade.[1] Opioids are associated with considerable harms, including adverse healthcare consequences (such as overdoses and transmission of blood-borne viruses through injecting drug use) and socio-economic harms (like loss of productivity and increased policing costs).[2],[3] Rapid development of tolerance and discomforting withdrawal symptoms often results in users becoming dependent on opioids fairly quickly and increasing the consumption of this class of psychoactive substances. Opioid dependence is often considered a chronic relapsing disorder with many patients resuming opioid use after varying periods of abstinence to illicit opioid use.

The increase in the numbers of individuals with opioid dependence and consequent actual and potential public health damage has been reckoned as opioid epidemic.[4] The morbidity and mortality associated with this epidemic have been considerable.[5] Addressing this opioid epidemic has required the collaboration of the supply reduction, harm reduction, and demand reduction measures.[6] An important component of dealing with opioid crisis has been adequate treatment of patients who are currently opioid-dependent and effective pharmacotherapeutic options are available to help patients with opioid dependence in their road to recovery. One of the important outcome parameters for outcomes in patients with opioid dependence has been drop-out from treatment, which still remains a challenge. Treatment services have attempted to engage patients with opioid dependence, providing them with a range of services with the intent of managing opioid dependence and promoting recovery.

A similar experience is felt by another vulnerable population that is elderly, especially who are institutionalized. Proper medical care improves the socialization and thereby get rid of the psychological problems.[7]

The concept of “patient needs” has been put forth to address the issues that are of importance to the patient so that services can focus on these specific aspects.[8],[9] Camberwell and his team worked on the idea in relation to patients with severe mental illnesses[10],[11] and they standardized an instrument that provides an insight into patient needs are according to the patient themselves, the treatment providers and significant others. The intent and clinical utility of such an instrument lie in the development of a comprehensive management plan so that the patients are benefitted. The unmet needs can be worked upon by the treatment team including the nursing professionals who work closely with the patients and solutions could be worked upon wherever feasible. This may better engage patients in treatment and favorably alter their course.

The most common unmet needs identified by the patients on methadone maintenance treatment were the use of nonprescriptive drugs, socialization or company, daytime activities, budgeting or money, psychological distress, physical health and knowledge and access to welfare benefit.[12] Unmet needs were significantly high for the patients on methadone maintenance treatment and unmet need domains identified were substance misuse treatment, daytime activities, socialization, money, and psychological distress.[13]

Caregivers and family members often play a crucial role in the treatment of patients with opioid use disorder.[14] They are the ones who are often adversely affected by the patient's substance use and may be emotionally invested in the patient's welfare. Residing in proximity, they are likely to be quite aware of many needs of the patient. They are also likely to be of pragmatic support to patients in their course for recovery and rehabilitation.[15]

Well-supported evidence shows that the current substance use disorder workforce does not have the capacity to meet the existing need for integrated health care and the current general health care workforce is undertrained to deal with substance use-related problems. The risk for lapse and relapse is particularly high after a period of abstinence, due to differences in perception of needs between patients and their family caregivers. Thus, cognizance of the opinions of the family members about the patient's treatment needs can be helpful in better understanding the current situation of the patient. Thus, this study aimed at assessing the needs of patients with opioid dependence from the perspective of treatment-seeking opioid-dependent individuals and their caregivers.

  Subjects and Methods Top

This cross-sectional study was conducted at the National Drug Dependence Treatment Centre, Ghaziabad, which is affiliated with All India Institute of Medical Sciences, a well-established medical school in New Delhi, India. This publicly funded teaching and clinical facility provide medically-oriented care to patients with substance use disorders. Patients with opioid dependence constitute the majority of those who seek care at the center. Treatment is provided by a team of doctors, nurses, psychologists and social workers. Both outpatient and inpatient treatment services are available. There are about 10,000 new patient registrations and 1,000 admissions annually at the center. For opioid dependence, treatment options are available in the form of opioid substitution treatment or detoxification followed by use of antagonist medication in the form of naltrexone. Psychological interventions are provided as required. Family members often accompany the patients for treatment. Treatment is largely subsidized and clientele mainly comprises patients from lower socio-economic strata.

For the present study, patients and their caregivers were recruited as dyads. On hundred and five adult male patients diagnosed with opioid dependence as per International Classification of Diseases 10 criteria who could understand either Hindi or English were recruited in the study after obtaining informed consent. Those patients who had a specific previously diagnosed psychiatric co-morbidity (schizophrenia, bipolar affective disorder, or depressive disorder) were excluded. 105 adult caregivers who were attending the outpatient services along with the patient who was currently living with the patient and conversant in either Hindi or English were included. Caregivers were excluded if they were dependent users of substances (except tobacco) or who did not consent for the study. The study had institutional ethics committee approval (IECPG-121/February 28, 2019). Informed written consent was taken from the subjects before collecting data. Confidentiality was ensured for all subjects and anonymity was maintained. Data were collected in privacy from patients and the caregivers. Permission was obtained from the respective copyright author to use and translate the tool into Hindi.


Patients and their caregivers were recruited in the study after taking informed consent. They were assessed by one of the investigators diabetic macular edema using a questionnaire developed for the study. The questionnaire covered items related to socio-demographic data of the patients, their substance use history, and the amount spent on opioid use. Similarly, demographic details were obtained from the caregivers. The needs of the patients according to the perceptions of the patients and caregivers were assessed using the Camberwell Assessment of Need Short Appraisal Schedule (CANSAS).[10] CANSAS is a 22-item instrument that covers various aspects of an individual's life and mental well-being. The domains include accommodation, food, looking after the home, self-care, daytime activities, physical health, psychotic symptoms, information on condition and treatment, psychological distress, safety to self, safety to others, alcohol, drugs, company, intimate relationships, sexual expression, child care, basic education, telephone, transport, money, and benefits. The domain of 'psychotic symptoms' was excluded from needs (due to exclusion criteria). The needs are classified as met needs, unmet needs and total number of needs. The inter-rater and test-retest reliability of total needs has been reported as 0.99 and 0.78, respectively. The administration of the tool took roughly 10 min. The information about the needs was collected in a single sitting, separately from the patients and the caregivers after ensuring adequate privacy to the participants. Statistical analysis was done using STATA 12.0 (Stata L Corp, Texas, USA). The socio-demographic, clinical variables and needs were represented using mean, standard deviation and frequencies. Kappa coefficient was used to find the agreement on various domains of needs between patients and their caregivers. P < 0.05 was considered statistically significant.

  Results Top

The socio-demographic characteristics of the 105 patients and their caregivers are presented in [Table 1]. The caregivers were parents in 5.2% of cases, sibling in 25.7%, spouses in 15.3% and other relatives (uncle) in 3.8% of cases. The mean age of patients was in the twenties while that of caregivers was in forties. While all the patients were males, a slight majority of the caregivers were females. A slight majority of the patients and caregivers resided more than 50 km from the center, and similarly, a slight majority fell in the lowest income bracket.
Table 1: Sociodemographic characteristics of the patients and caregivers (n1=105 and n2=105)

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The mean age of onset of opioid use was 20.4 ± 6.4 years. A large majority of the patients comprised of heroin users 82.9% (n = 87) while the remaining comprised of those abusing buprenorphine, pentazocine, tramadol, codeine or natural opioids. Thirty-one (29.6%) patients reported a history of injecting drug use and eighteen (17.14%) of them reported sharing of needles. It was seen that 96.1%, 71.4%, 31.4% and 26.5% of patients had been current (i.e., last 1 month) users of tobacco, cannabis, alcohol and nonprescription sedatives, respectively. Fifty-four (51.4%) patients were spending more than the international normalized ratio 1000/day on heroin use. Twenty-seven patients had a history of incarceration.

The met and unmet needs as perceived by patients and their caregivers are presented in [Table 2] and graphically depicted in [Figure 1] and [Figure 2]. The most common unmet needs according to patients related to physical health, money, and company. The most common unmet needs according to the caregivers related to money, daytime activities and looking after home. The least commonly endorsed unmet needs pertained to transport and accommodation. The most common met needs according to the patients and caregivers related to accommodation.
Figure 1: Needs according to patients

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Figure 2: Needs according to caregivers

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Table 2: Met and unmet needs of patients according to patients and caregivers (n1=105 and n2=105)

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The agreement on the needs as mentioned by the patients with opioid dependence and caregivers are presented in [Table 3]. It was seen that agreement of the patient and caregivers' responses was highest for education, telephone, and accommodation. The agreement was lowest for psychological distress, money, and physical health.
Table 3: Agreement of needs perceived by patients and caregivers (n1=105 and n2=105)

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  Discussion Top

This study presents the perceived needs of treatment-seeking patients with opioid dependence. The most common unmet needs of patients rated by patients were physical health, money, and company of people. Many patients reported physical health as an unmet need, which is similar to findings among patients with opioid dependence[12],[16] and addiction in general.[17] The importance of this finding lies in the need to pay attention to the physical health of the patients and use of optimal medications to relieve the complaints. Most of the patients also reported money as an unmet need.[18] One of the possible reasons for this finding could be the expenditure in procuring the opioids. Opioid-dependent individuals need their dose on a daily basis and burden of opioid dependence on finances of the patient and their family members become quite evident. Three-fourths of the patients reported companionship as an unmet need followed by daytime activities and psychological distress. Opioid-dependent patients rated domains of companionship, daytime activities, and psychological distress as important unmet needs.[12] A lack of companionship might be due to experienced stigma whereby other nonusers might keep away from the individuals' using opioids, or self-stigma whereby the individual himself/herself feels excluded from social discourse. However, a feeling of loneliness and exclusion may result in distress and may in some cases lead to relapse to substances.

One of the important unmet needs for both patients and caregivers in this study pertains to the information about the disease condition and treatment. Previous literature on substance users has found that this was largely a met need.[12],[13] This suggests that lesser emphasis was being given on educating the patients about their condition and their treatment in the current setting, possibly because of the limited time per patient, limited educational background of patients, and lack of healthcare culture that lays emphasis on educating patients and collaborative decision making. Previous literature from the region also has remarked information about the illness and treatment as an important unmet need in patients with other psychiatric disorders.[19],[20] A nurse-led video-assisted Nicotine Replacement Therapy was found effective in educating the tobacco-dependent patients in reducing tobacco use.[21] From the perspective of caregivers, the major unmet needs are related to money, looking after home and daytime activities; as with patients, caregivers were seemingly aware of the financial distress caused by opioid dependence. However, not being able to “look after the home” was seen as an important aspect, which was not given similar importance by the patients. Similarly, self-care being an unmet need was seen by a larger proportion of the caregivers but not by patients; perhaps the patients did not bother about upkeep of residence and themselves when they were focused on the substance consumption and enjoyment of its effects. Similarly, in previous studies from the region (Asia) on patients with schizophrenia, caregivers perceived more unmet self-care needs than patients.[19]

The agreement among the needs as mentioned by the patients and their caregivers was seen to be “fair” to “good” for many of the items in the questionnaire. However, the agreement between the patient and the family was seen to be “poor” (i.e., kappa values of 0.2 and less) for self-care, looking after home, company, physical health, money, and psychological distress, which suggests that among many things, the caregivers were not aware of exact financial difficulties and emotional distraught faced by the patients. Opioid dependence is associated with overdoses which are sometimes intentional and which may have a link with difficult life circumstances.[22],[23] Caregivers being not aware of the patient's current psychological distress may mean that limited efforts would be made in providing emotional support by them to the patient with opioid dependence. This also means caregivers may be having emotional distance with the patients, which might have been contributed by many factors, including their past difficult experiences with the patient.

The implications of the present study are many; patients with opioid dependence syndrome and their caregivers should be advised to seek help from mental health professionals to learn how to assess the needs of the patient and carryout interventions to enhance recovery process. Mental health professionals; psychiatrists, psychologists, nurses and social workers can plan, and implement care according to the needs perceived by patients recovering from with various substance use disorders. Mental health team members should also train the caregivers of patient to assess the needs of patients and develop a plan for intervention to fill this gap. The role of nurse is to become an active communicator, participating in family interactions of Substance Use Disorder patient and analyze gaps in perception of needs of patients recovering from opioid dependence syndrome. Nurses can arrange meetings with the family members to address the communication needs of caregivers with treatment team members to fill the gap in difference of perception.

The strength of the study is inclusion of information about needs being obtained not only from the patients but also their caregivers which enabled comparisons of the two information sources. Furthermore, this study provides information on needs of patients with addiction from developing country scenario, where the service delivery characteristics and social outlook are different from population from developed nations. The limitation of the present study is that it is a single treatment center experience and convenient sampling technique was used which limits the generalizability of findings. Further studies can be done to evaluate the needs of patients with opioid dependence in larger population in different study settings and geographical area.

  Conclusion Top

In the present study, there were discrepancies between the caregivers and patients in perception of needs of patients with opioid dependence syndrome. Thus, the findings reflect the need for posting a mental health specialist nurse who is having training and the skills to assess a specific issue of relapse prevention in a recovering substance use-dependent patients. The nurses if posted in outpatient department can identify if the substance use disorders patients and their family members have understood the importance of common issues that could obstruct in recovery process. The family caregivers need to understand how to identify the needs of the patients correctly and assist the patient to deal with the risk of relapse to substance use, hence provide need-based support and intervention to the patient who is recovering from substance use disorder. The need of the hour is to manage lapse effectively after postdetox period to ensure the recovery process.

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Conflicts of interest

There are no conflicts of interest.

  References Top

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  [Figure 1], [Figure 2]

  [Table 1], [Table 2], [Table 3]


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