Mental health articles

This is a mental health essay about a mental health strategy for preventing future mental health problems among adolescents orphaned by AIDS

By Thupayagale-Tshweneagae, et al.

Introduction

Adolescence is a unique phase of development occurringbetween the ages of 14 and 18. This is a crucial transitionalperiod from childhood to adulthood (Stuart & Laria2001). According to UNICEF (2004) several key developmentalexperiences occur during adolescence and theseinclude physical and sexual maturation, progress towardssocial and economic independence and further developmentof identity. Essentially, there is a gradual transitionfrom early adolescence (10–13 years) to middle adolescence(14–18 years), although some of the developmental challengesof early adolescence can continue into middleadolescence (Fontaine & Fletcher 2001).

As the adolescent matures, some issues become increasinglysignificant, including prevention of sexual abuse andexploitation, attainment of life skills and the achievementof overall productive development (Feldman 2008). Foradolescents orphaned by AIDS, mental health improvementinterventions are particularly important because the psychosocialand economic distress that these adolescentsoften experience can lead to risk-taking behaviours linkedwith unsafe sexual practices and substance use (Seboni1997, Tsheko 2005, Osborn 2007). This can be aggravatedby the loss of parental guidance (Seboni 1997), as well asby the fact that while adolescents do understand the natureof loss, they often fail to express their feelings and fears atthe time of the loss. Feelings of resentment and anger at the death of the parent and towards relatives and friends whowant to act as parent figures can therefore worsen thesefeelings (Sento-Pelaelo 2005). The resentment and unexpressedanger may lead to maladaptive coping, which willlead to depression, hopelessness, and increased vulnerability(UNICEF 2004).

This paper illustrates how inclusiveness, a concept thatrequires for an individual to be part of the proceedings,can lessen the pain of losing a parent among adolescentsorphaned by AIDS and, as a result, prevent future mentalhealth problems that may occur because of inappropriategrieving and maladaptive coping strategies. The paper usesdata obtained from focus group discussions held in 2009with adolescents orphaned by AIDS in urbanSouth Africa.

Methodology

Setting

The study took place at a day-care centre run by a nongovernmentalorganization in a township 35 kilometresfrom the capitalPretoria. The centre accommodates criticallyill clients and also serves as a day-care centre fororphans. The centre provides food rations for its clientsand teaches them skills such as knitting and gardening onSaturdays. At the time of the study there were 250 orphansat the centre, and 150 of these were adolescents orphanedby AIDS.

Data collection

Data were derived from four focus group discussions thatwere conducted with the adolescents aged 14–18 yearsorphaned by AIDS, who regularly attended the day-carecentre on Saturdays. The focus group method is a techniqueof group interview that generates data through theopinions expressed by participants, and is used partly toseek opinions, values and beliefs in a collective context(Morgan 1998, Krueger & Casey 2000, Halcomb et al.2007). The basic assumption of this method is that individualsare an essential source of information and canexpress their own feelings and behaviour (Clarke 1999).The four focus groups, the number and size of whichdepended on the availability of the participants, werestratified as follows:

1. A mixed group of seven women and five men;

2. A female group consisting of all the 10 female participantsin the study;

3. A male group consisting of all the five male participantsthe study;

4. A group of siblings from two families (three siblingsfrom one family and four siblings from another family).The siblings were drawn from the female and male groupsin (2) and (3) above.

The focus group discussions were conducted in a privateroom at the day-care centre and the discussions were inSetswana, the vernacular for both the researcher and theparticipants. With the consent of the participants all groupdiscussions were tape-recorded. The focus group discussionswere structured around the following themes: grievingpatterns; coping strategies; experience with loss; andexpectations.

Data analysis

After the data collection, the focus group discussionswere transcribed and translated into English. With particularfocus on the themes around which the discussions werestructured, discourse analysis (Alba-Juez 2009) was used asthe analytical framework. The focus of discourse analysis isany form of written (in this case the transcripts) or spokenlanguage. Through this an investigator attempts to identifythemes, ideas, views, and so on, with the aim to understand,for example, how people construct their own versionof an event, in this case the illness and death of a parent(Fulcher 2005).

Ethical considerations

Ethical clearance for the study was obtained fromtheTshwaneUniversityof Technology’s Ethics Committee andFaculty Research and Innovation Committee at the University’sFaculty of Science. Consent to conduct the study wasalso obtained from the coordinator of the day-care centre.Prior to the commencement of each focus group discussionthe principal investigator also explained to the participantsthat participating in the study was voluntary. It wasfurther stressed that those who did not want to participatein the study would not be treated any differently by theinvestigator and the centre. The participants were furtherinformed that they could withdraw from the study at anytime if they wished to. The participants were also given thecontact information of the researchers in the event that theyhad further questions or comments. After these explanationswritten informed consent was obtained from adolescentswho were willing to participate in the study.

Results

The data analysis did not reveal any major variations in theexperiences and feelings of adolescents by age or gender.Therefore, no attempt was made in this section to presentthe results by these variables or by type of focus group.

Experience with loss

The researcher started the focus group discussions with therequest: ‘Please tell me about your experiences with the lossof your parent(s).’ The responses were varied and included:‘It took time to accept it but it became better after a year’; ‘Ifelt like killing myself’; ‘It is very painful’; and ‘I am lonely’.Most of the adolescents had lost their parents between2003 and 2006, and it was evident that the pain of losingtheir parents was still intense. Most of the participantsreported that they were told about the death of theirparents by the relative with whom the participants nowlived such as their grandmother, uncle or older sibling.There were variations in the way participants were told ofthe death of their parent(s). Variations used included statementssuch as the following: ‘Your mother has been sickwith TB and flu and now she is gone’; ‘Are you aware thatyour father has been in hospital?’; and ‘Did you know yourmother had a contagious disease?’.

Overall the adolescents stated that the death of theirparent(s) came as a shock because they were of the impressionthat their parents were improving as they have beenexcluded from visitation with them at the hospice or hospital.When the principal investigator asked participantswhat would have been the best way to be told, all of themsaid the relatives should have just told them directly.

Grieving patterns

Grieving patterns are the various ways in which adolescentsmourned or grieved the loss of their parents. Thegrieving patterns included crying, desolation, verbal abuseand refusal to communicate with friends and close familymembers. Crying was cited by the majority of participantsas their main grieving pattern. According to participants,crying relieved the tension but did not take away the pain.There was also a strong feeling of desolation, as if theworld had ended. This was best summed by a participantwith the quote below:

I could not feel anything. There was no emotion. Ilooked at people and did not see them until I asked themwhat it was that they had just said. It was like the worldhad ended.An uncommon pattern of grieving was that of verbalabuse, where two participants reported verbally abusing torelatives and friends who wanted to help them. Participantscontinuously asked those offering condolences why theywere alive and their parents were dead. Participants alsogot angry at those who said in time the pain will go away.One participant explained the abuse when she reportedthat a teacher who had known her parents asked her andher siblings to contact him anytime they were in need, andshe said to the teacher: ‘You should have died so that mydad would look after your children.’

Coping strategies

Coping strategies are patterns of behaviour that orphanedadolescents used to cope with the loss of their parent(s).A variety of coping strategies were used by participants.Strategies used included the following:

Talking continuously about parentsParticipants with siblings reported that continuouslytalking about their parents allowed them to heal as it keptthe memories of the parents alive. They also reported thatcontinuously talking about parents helped them to encourageone another to work hard at school.

Fighting with those who mentioned parents

One participant reported that she fought with every personwho mentioned her parents both at home and at school,and reported that after fighting she felt relieved that she hasdone something good for her mother.

Being alone

Some participants preferred their own company as theymentioned that what they were experiencing was toopersonal. This was best explained by an 18-year-old maleparticipant who described his wish to be alone this way:‘When I am alone I can think about my mother with nointerference and I keep her alive in my thoughts and thathas eased the pain.’

Reading a book on death and dying

Reading a book on death and dying helped one participantand her siblings to accept the death of the mother. Theparticipant said the simple book written in the local languagesimply said ‘there is a time to die for each person’.

This convinced the participant that it was time for hermother to die.

Writing poems about dead parent

Another participant who used poetry to mediate the pain oflosing his mother and the subsequent verbal abuse from hisuncle wrote his feelings and emotions in a poetic form. Heclearly described anguish, anger and the betrayal that hefelt at the death of the mother. His writing is consistentwith Repchuk (2006) who proposed the use of poetry torelieve stress and cope with unbearable situations.Other coping strategies included seeking support fromfamily; receiving counselling at school; looking at parents’photographs and carrying them all the time; and listeningto stories about parents.

Expectations

Participants’ expectations were grouped into three themes:(1) expectations during the time of illness; (2) at the time ofdeath; and (3) after death. Participants reported that theyhad expected their parents to tell them the truth aboutwhat they were suffering from so that people would not useit to rebuke them. The participants reasoned that if theyhad been told the truth, they would have been in a positionto defend themselves. They also expected that parentswould have made future living arrangements for them intheir presence in the event of death in order to stop otherrelatives from wanting to stay with them just for theirproperty or to abuse them.

Participants’ expectations during death were that theyshould have been consulted about the funeral arrangementssuch as being asked to choose the coffin and to say a eulogy.The participants further reported that they should havebeen given all the attention, as they were the chief mournersand should not have been asked to make tea or cook forthose coming to pay condolences.

In the event that parents did not make living arrangements,the participants expected that they should have beenasked where they would like to stay and with whom. A16-year-old female adolescent who lost both parents in2004 and had not adjusted to their deaths, had this to say:I would have chosen my mother’s relatives. My maternalgrandmother is still alive and we are now subjected tothe cruelty of our paternal aunt.

Discussion

A key theme drawn from the orphaned adolescents’ narrationsin the foregoing section is that they felt excludedduring the illnesses, deaths, and funerals of their parents.The adolescents lamented, for example, that they did nottake part in their parents’ funeral arrangements and that atthe very most they were left to be hosts or hostesses – evenasked to make tea – for people coming to pay condolences.This made them feel unrecognized as mourners, and thattheir loss was unacknowledged. One participant stated thatshe was even asked to go to school a day after her motherdied so that she would not miss too much of her schoolwork. Such things, the adolescents argued, delayed theirgrieving process. Overall the adolescents strongly believedthat their greater involvement would have been reassuring,and could have helped them cope better with their loss.This is consistent with the literature where many studiessuggest that children should be included in the decisionspertaining to their parents’ illnesses and funeral arrangementsto curb mental health problems such as guilt, shame,loneliness and depression from occurring (Rando 1984).Wolley (1995) states that people who suffer from HIV andultimately die from AIDS should be given the opportunityto disclose this information themselves. Similarly, Waid-Wimmer (2006) argues that disclosure to an adolescent bya parent who can explain the factors leading to the diseaseas this explanation will help the adolescent to cope withthe death of a parent. This point is further emphasizedby Candib et al. (2002) who noted theNorth Americanculture that supports open disclosures with cancer patientsto enable them to deal with end-of-life issues.

It is noteworthy, however, that in many African societiesthe exclusion of adolescents from decisions about theircritically ill parents and funeral arrangements is embeddedin cultural practices where adolescents are often consideredtoo young to understand the process of death and dying(Muula & Mfutso-Bengo 2004, Sento-Pelaelo 2005).Many African cultures also believe that children shouldnot be told a lot about what happens as a buffer for theirfeelings. Muula & Mfutso-Bengo (2004), for example,associate the sensitivity of disclosure of a diagnosis withHIV and AIDS with the stigma and discrimination, whileTuckett (2004) supports this notion of non-disclosure froman ethical perspective. According to Tuckett, being honestand truthful about the critical nature of an illness to onewho doesn’t have the capacity to understand, such as anadolescent, can be regarded as causing harm.

The findings of this study, however, negate the belief thatchildren should not be included in the decision-makingabout their parents’ illnesses and funeral arrangements.There was a strong emphasis among the study participantsthat they needed to be involved in all aspects of theirparents’ illness, including where they should be nursed andby whom. Active roles in which the participants felt theycould have been involved included choosing a coffin, sayinga eulogy, and selecting songs to be sung during the funeral.The adolescents strongly believed that their inclusion in theillness and funeral arrangements would have allowed themto grieve appropriately, coped better with the impendingloss and the ultimate loss, and would have made closureeasier for them. Issues of guilt and shame would not haveoccurred and would not have suffered unduly from isolation,shame and depression. Including participants in thepreparation would have also demonstrated that caregiversrecognized them as the bereaved. The adolescents’ narrationson what could have been done is supported byWorden (1996), a child psychiatrist, who is of the view thatreciting a poem as a eulogy or choosing a song to be sungfor a parent at the funeral helps feelings of grief.

The findings of this study suggest the need for greaterinvolvement of mental health nurses in educating communitieson the importance of recognizing adolescentsas mourners who need to be involved in the illness and subsequent deaths of their parents. Working closely withother service providers such as social workers, mentalhealth nurses could also be involved in the assessment oforphan placements to ensure family support and caregivercommitment. However, to the extent that culture has a verylarge determining factor on the behaviour and beliefs ofpeople, there is need for research to explore how orphanedadolescents can be included in the decision-making processesabout their parents’ illnesses and funeral arrangementswithin the African cultural context. The extent towhich inclusiveness could be a mental health strategy forpreventing future mental health problems among adolescentsorphaned by AIDS could also be a worthwhile andmajor element of this research agenda.

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