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Japan Journal of
of Nursing
Nursing Science
Science (2016)
(2016) 13, 256–264 doi:10.1111/jjns.12105
doi:10.1111/jjns.12105
ORIGINAL ARTICLE
Abstract
Aim: To explored the role of family-centered care in supporting children living with HIV and AIDS in
Nigeria.
Methods: A qualitative research design was adopted for this study with a grounded theory approach.
Children aged between 11 and 14 years living with HIV and AIDS, their caregivers, and nurse practitioners
working in the HIV clinic were engaged in separate focus group discussions in two hospitals in Nigeria.
Results: The findings showed that the value African families place on children plays a significant role in
identifying their care needs and providing their basic necessities; hence, people around the sick child tend to
make him feel better, as attested by nurse practitioners and caregiver participants. Nurse practitioner
participants cited unified families as providing care support and love to the children and the support needed
to alleviate their sicknesses. Children participants confirmed that family members/relatives were always at
their disposal to provide supportive care in terms of administrating antiretroviral medication as well as other
psychological care; although a few participants indicated that disruption in family structures in resource-
poor settings, isolation and withdrawal, and deprivation of care due to poverty threatened the care rendered
to the children.
Conclusion: The study highlighted the value attached to children in the African context as helping family
members to identify the care needs of children living with HIV and AIDS; thereby providing succor to
alleviate their sicknesses and enhance their quality of life.
Key words: children, family-centered care, HIV/AIDS.
© 2016 Japan Academy of Nursing Science © 2016 Japan Academy of Nursing Science
Japan Journal
G. Achema andofB.
Nursing Science (2016) 13, 256–264
P. Ncama Family-centered
Japan care forScience
Journal of Nursing HIV children
(2016)
to promote psychosocial support and holistic care for could address treatment challenges and other param-
children and other family members (Mikkelsen & eters of care among children living with HIV and AIDS
Frederiksen, 2011). (Adato & Bassett, 2009; UNICEF, 2011).
Family-centered care views the family as a special According to Farmer and Mignano (2011) comment-
component in the delivery of healthcare services to the ing on the challenges of family-centered care in the
sick child, and in delivering these services, adequate Nigerian context, inadequate participation, vulnerabil-
collaboration between healthcare workers and family ity of women, and abandonment are core factors ham-
members is necessary to foster interactions for a better pering family-centered approaches in the care of
health outcome (Kovacs, Bellin, & Fauri, 2006; Shields, children; in response, they advocate for interventions
Pratt, & Hunter, 2006). The family plays an integral that could address these challenges and promote acces-
part in the treatment and care of the sick child, and sibility to healthcare in remote villages. In a similar vein,
because family members collectively participate in Bhana, McKay, Mellins, Petersen, and Bell (2010)
enhancing this care, it is crucial for them to have an propose the Collaborative HIV Prevention and Adoles-
understanding of the child’s illness. The core principles cent Mental Health Program (CHAMP) as a model for
of care must be given substance in the relationship addressing the challenges of HIV-positive diagnosis
between family members and healthcare professionals to among children and adolescents in resource-limited set-
ensure an optimal health outcome for the child tings in Nigeria. Studying family dynamics would
(Johansen, 1994; Kohn, Corrigan, & Donaldson, 2001). provide the basis for a comprehensive family-centered
According to Ayieko (2003), loss of their parents and care approach in the care and treatment of children
ailments of HIV-affected caregivers cause orphans to infected with HIV and AIDS (Ehlers & Chiegil, 2011).
become separated from their families and caregivers. Even though family-centered care has had to face
They are deprived of affectionate care within the family many challenges over the years, it has now been
structure because older children leave the home setting accepted as the bedrock of integrated care for children
for other places where they have an opportunity to live living with HIV and AIDS in providing services that can
a better life. Rochat, Bland, Coovadia, Stein, and Newell enhance health outcomes and in coping with the conse-
(2011) accordingly advocate comprehensive health care quences of HIV (Richter, 2010). The general well-being
with an integrated family-centered approach in provid- of vulnerable children living with HIV and AIDS can
ing supportive care to children and their individual fami- also be improved by a framework of family-centered
lies, which would make it possible to ascertain the care focused on enhancing their quality of life
complexities of the needs of the child in the context of (DeGennaro & Zeitz, 2009). It is on these grounds that
the family care structure. family-centered care is appropriate to consider when
Economic hardship associated with child inheritance designing programs of intervention for prevention,
can create a burden within caregiver–family structures treatment, and care support for children living with HIV
for foster care given to children infected with HIV and and AIDS in African settings (Harrison, Newell, Imrie,
AIDS (UNICEF, 2002a). The difficulty that loss of & Hoddinott, 2010; Sherr, 2010).
inheritance causes for child-headed households is a huge Against this background, the study was conducted to
problem for vulnerable children orphaned by HIV and investigate the nature of care given to children living
AIDS living in poorer households (Maqoko & Dreyer, with HIV and AIDS in Nigeria in order to determine
2008). Research has shown that to reduce the morbidity what kind of care would be most appropriate and what
and mortality of HIV-related conditions and address the underlying philosophy should be for such care. The
other care challenges, these children living in poorer overall objectives of the study were to determine the
households would need assistance in terms of medical value of family life in the care of children living with
and emotional support within the confines of family- HIV and AIDS and to see whether there is inclusion of
centered care (Violari, Cotton, Gibb, Babiker, Steyn, families in the treatment and care services. This paper
Madhi & McIntyre, 2008). reports on one aspect of the study.
Research has also found that single parenting puts
children at risk of isolation or withdrawal, which is METHODS
likely to hamper efficient care given to them at the family
level (Goldman, Salus, Wolcott, & Kennedy, 2003). Design
Good coordination between families and community A qualitative research design was adopted for this study
members is necessary in order to map out strategies that using the grounded theory approach proposed by
Strauss and Corbin (1990) in a bid to analyze the role of AIDS. The target population was deemed to be appro-
family members in looking after children infected with priate in view of their experiences in the care of children
HIV and AIDS. Nurse practitioners (NP), children, and living with HIV and AIDS and in relation to the percep-
caregivers were engaged in separate focus group discus- tion of care within family constructs. The NP, the chil-
sions to ascertain the involvement of family members in dren, and their caregivers had three separate focus group
regard to the roles played by each of them in the care of discussions to get to theoretical saturation based on
children living with HIV and AIDS. Synergy was main- emerging concepts as the study progressed. Studies per-
tained during focused group discussion sessions in a bid formed among vulnerable populations such as children
to allow each participant to feel at ease and contribute living with HIV and AIDS are ethically defensible if the
meaningfully in this study. subjects stand to benefit from the research and if the
study is geared towards improvement of their health and
Participants general well-being (Yan & Munir, 2004).
The study was conducted in two hospitals in Nigeria
(one faith-based health organization and one govern- Data collection measures
ment health institution). There was an initial sampling The present authors’ university’s ethics committee
of four participants among NP working on the approved this study before the actual data collection
antiretroviral (ARV) unit from each of the hospitals, and process began, and gatekeepers’ permission from
this sampling frame was built to theoretical saturation various health institutions where the study was con-
of 10 members, making a total of 20 members for the ducted was received; individual participants endorsed
two hospitals. An initial sampling frame of four informed consent to participate voluntarily in the study.
members each for children and the caregiver partici- The principles outlined by Trochim (2006) were fol-
pants was also adopted, which was built to theoretical lowed in regard to ethical approval, which include
saturation of eight members each, making a total respect for persons, voluntary participation, giving
number of 16 members for each hospital (i.e. eight chil- informed consent, protection from risk or harm, confi-
dren and eight caregivers in each group). The partici- dentiality, anonymity, and institutional board review.
pants gave written consent to participate in this study, The data collection took place in a secluded apartment
and the sampling strategy was guided by theoretical in the ARV unit of each hospital to protect the partici-
principles and constructs in that participant selection pants from unnecessary questioning and undue expo-
was based on emerging concepts as the study progressed sure. The faith-based health institution was tagged as
to ensure adequate representation (Polit & Beck, 2013). Hospital A and the government health institution was
tagged Hospital B. Data collection in qualitative
Sample inclusion criteria research is done in natural settings which gives an
Child participants in this study had to be aged between opportunity to maximize the intensity of the phenom-
10 and 14 years, have had disclosure of their HIV status, enon to be studied and the frequency under which that
and be accessing ARV care at the time of the study. phenomenon occurs (Burns & Grove, 2009; Morse &
Caregiver participants had to be either biological or Field, 1995).
foster parents of these children and had to be involved in The focus group discussions took approximately
their care. NP participants had to be working in the 1.5 h/session and the discussion guides were aligned
ARV units and doing home visitation at the time of this with the parameters of family care approach for children
study. Support for the inclusion of children in the living with HIV and AIDS in order to ascertain how the
research process is gaining prominence under the laws of care was being perceived. The participants received a
adoption and the family law, and any child above 10 sum of 600 naira for transportation and there were
years of age may give consent for it’s own adoption and other gift items for children in participating in this study.
for other activities such as participating in research The period for the data collection was approximately 3
(Family Law, 2011; Brown et al., 2011). months (July–September, 2013).
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© 2016 Japan Academy of Nursing Science 3
© 2016 Japan Academy of Nursing Science
Japan Journal
G. Achema andofB.
Nursing Science (2016) 13, 256–264
P. Ncama Family-centered
Japan care forScience
Journal of Nursing HIV children
(2016)
was done by the coding procedures proposed by Strauss pants in this study who indicated that disrupted family
and Corbin (1998) comprising open, axial, and selective structures with inadequate HIV care posed a challenge
coding. This was validated with the constant compari- to the care of these children in resource-limited settings.
son method at every phase until theoretical saturation The nurses cited disruption of family structure as nega-
was achieved (i.e. at the point where no further codes tively influencing the family-centeredness of care that
and/or relationship emerges from the data). In line with health facilities could be rendering. The following quo-
grounded theory procedures, data collection and analy- tation from one of the nurses sums up this observation:
sis were interrelated and done simultaneously to see the I had a client at the age of 12 years or there about who has
emerging concepts before theoretical saturation. The been accessing care here, an orphan, no father, no mother,
emerging codes, concepts, categories, and their subcat- the only surviving sister has just graduated from school of
egories were ascertained to see the similarities, with health technology here and brought her to the hospital for
confirmation with other research findings to give a thick the usual free treatment and we were told that they were on
description of the theoretical concepts. admission and discharged 2 weeks ago and no money to pay,
so they have to get a loan to pay the hospital bill . . . now the
child is sick again, with the fear of going on admission for
FINDINGS doctor to officially see them, they say no, if the child is
treated, who is to pay; now they don’t want to disclose to
The identified themes extracted from the findings on people because of the fear . . . what will they take this family
strengthening of family-centered care included value of to be. (NP Participant 2; Hospital A.)
the care of the sick child, provision of love and care to
succor the child, and supportive care to alleviate their Provision of love and care to succor the
sicknesses, while disrupted family structures with inad- sick child
equate care, isolation and withdrawal, and threats of The findings further revealed that, living as a unit, fami-
poverty and deprivation were found to pose challenges lies tend to manifest love and care for the sick child;
to family-centered care for children living with HIV and hence, when the child has any problem, it is easily iden-
AIDS. tified by family members and succor is provided within
Value of the care of the sick child that setting. The NP noted that when a child is sick, it is
seen as sickness that affects the whole family; as such,
The findings identify family value of children in African other family members can come to visit and give encour-
societies as the core issue in support of family-centered agement in a bid to provide some level of assistance.
care as members of the family take appropriate care of Even with admission to hospital, the family forms an
these children at the home-based setting. The NP and important part of the health team, which also provides
caregiver participants stated that this value was a crucial opportunities for educating the entire family on issues
element in identifying the care needs of the child around HIV and AIDS, including treatment options and
and providing the basic necessities, especially during supportive care. The importance of love and care in the
ill-health: family context in providing succor to the sick child was
The family values the general care of children in our African also emphasized by some caregivers, especially for
setting, so the family provides the necessities of children; the orphaned children made vulnerable by HIV and AIDS:
family places value on the care of these children, and as such
Living together as one unit families helps in the care of the
interact with them at their levels, in order to identify the care
sick child. In our society here, when a child is sick, it is seen
needs of the child. In African setting, when people are
as the whole family is sick, so when another family visits
around the sick child, the child tends to get better because,
them, they will sit down, talk with them, encourage them,
there is this African saying that, “sickness runs away from
others will even come with gift items; in this way they will
people”. (NP Participant 3; Hospital B.)
feel being loved. (NP Participant 2; Hospital B.)
. . . our family places value on the care of children when they
When they come to the hospital, we interact with them, sit
are sick. (Caregiver Participant 2; Hospital B.)
with them and educate them that they are still useful in the
Disrupted family structures with inadequate society; once they are thriving in their health, we also give
them health talk on the mode of transmission, not to play
HIV care in resource-limited settings
around with opposite peers in sexual promiscuity . . .
Although the value which families in African settings sharing of blades such as needles and sharp objects as well as
attach to care of the sick child has very significant reper- taking screened blood when they are to go on blood trans-
cussions on health outcomes, there were a few partici- fusion . . . we also educate them on the various treatment
available for children infected with HIV and AIDS. (NP Our family members do help us a lot in our care, because,
Participant 9; Hospital B.) they do not allow us to forget taking our drugs. . . they
remind us always, and when we need other care, they will
These children need love and care especially those that
give us; they are happy with us and they do not want us to
have no fathers and mothers. I mean the orphans
be angry at all. (Child Participant 5; Hospital B.)
(Amomayekwu), the family care they need are sometimes
missing, the caregivers should foster these children totally.
(Caregiver Participant 2; Hospital A.)
Threat of poverty and deprivation in
family-centered care
Isolation and withdrawal due to HIV condition Some NP participants indicated that, due to inadequate
with associated stigma resources and the attendant problem of poverty within
Isolation and withdrawal due to HIV condition (causing the family structures, these children may be deprived of
incapacity to care) coupled with stigma, were seen as the care that they should receive, and caregivers in such
affecting the supportive care given to these children at circumstances may find it difficult to provide for the
the family level, even though living as a single unit basic needs of the child, possibly because of spousal
family was a strong factor in providing love and succor death or due to general impoverishment.
to the sick child. Among the findings, this point was Well, the care, it varies, it depends on the financial capabili-
particularly emphasized by NP. The need for family ties of each family as we are talking about the care . . . if
counseling was highlighted as an important component somebody is so poor, he will find it difficult, except his
relations come to help. (NP Participant 2; Hospital B.)
in fostering family-centered care.
Some of the family members will accept the child with HIV My own challenge rests on poverty, maybe you have four or
and AIDS, but some may not accept because of stigma and five children and your husband is no more alive and you
discrimination. So the family needs good counseling to have no job, you cannot put them in school and this HIV
understand the problem of the child. (NP Participant 10; killed their father, so there will be a problem in caring for
Hospital B.) them. (NP Participant 4; Hospital A.)
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© 2016 Japan Academy of Nursing Science 5
© 2016 Japan Academy of Nursing Science
Japan Journal
G. Achema andofB.
Nursing Science (2016) 13, 256–264
P. Ncama Family-centered
Japan care forScience
Journal of Nursing HIV children
(2016)
due to issues of inadequate care coupled with other withdrawal caused by HIV, coupled with stigma and
factors that affect the ability of the family structure at other associated factors, can impinge on the supportive
the household level to accommodate caring for vulner- care given to these children when, in some cases, families
able children (Rochat et al., 2011). Low-income coun- and other people connected with the client may not like
tries presented with disrupted social structures among to be associated with the HIV condition. Nga Tran and
families, which incapacitates the family network in Mwanri (2013) found that HIV-related stigma among
caring for HIV-infected children. Violence and disasters, peers and parents can grossly affect the care given to
as experienced in some African countries, invariably children living with HIV and AIDS at the family/
weaken the family structure needed to cater for the community setting, and in the study by Beard et al.
needs of the child (Mathambo, Gibbs, Richter, & Sherr, (2010), capacity to care for children of sex workers
2008). living with HIV and AIDS was truncated because their
In providing love and care to succor the sick child, NP parents did not want to associate with their wards,
and caregivers made the point that, in African societies, creating an obstacle to the family-centered approach in
when a child is sick, the whole family is affected; the their caring patterns.
family thus carries the burden of care and provides the Caregiver and child participants citing the support
needed help for the survival of the child and this is and assistance given by family members in alleviating
possible because in African settings the family members the illnesses of children living with HIV and AIDS made
live with the children. The caregivers confirming this particular mention of help given in taking medications
point emphasized that family-centered care for orphans appropriately together with other psychological support
is all the more important because of their vulnerability. to alleviate anxiety that could aggravate the illness. A
There is a strong emotional tie between children and study conducted in Nigeria by Alubo, Zwander,
their parents in the African family context, as members Jolayemi, and Omudu (2002) reported that if a child is
of the family live together and share their problems, and diagnosed with HIV in a family setting, the entire family
this bond is embedded in the extended family system and/or household is said to be an AIDS family, with the
which includes aunts, uncles, grandparents, and neigh- onus of care resting on that family; supportive care is
bors, and promotes mutual commitment to one another then able to draw on the cohesion that characterizes
in shared responsibility for the care of the child (Bharat, African family settings, as the concerns of the infected
1999; Krishna, Bhatti, Chandra, & Juvva, 2005). Issues child become a personal concern for each family
relating to the culture of African family structures also member. In a similar finding, Iwelunmor, Airhihenbuwa,
mean that orphans and vulnerable children with HIV Okoror, Brown, and Belue (2006) noted that in southern
and AIDS need counseling and psychosocial support African communities, bonding between the parents and
from time to time to enhance their care (Southern Africa their children meant that the family system provided a
HIV and AIDS Information Dissemination Service/ supportive network in terms of emotional care, home
United Nations for International Developments support, and financial assistance to relatives and chil-
[SAFAIDS/UNAIDS], 2000). Studies have shown that, dren infected with HIV and AIDS.
the physical and psychosocial support which children The study also indicated that inadequate resources,
living with HIV and AIDS need in their coping strategies coupled with poverty among caregivers in the family
is provided by the African family network (Heymann, setting, incapacitated the care with family structure net-
Earle, Rajaraman, Miller, & Bogen, 2007; Makoae works becoming increasingly inadequate to cater for the
et al., 2005). When a child is found to be infected by numbers of vulnerable children orphaned by HIV and
HIV, the whole family is considered to be affected and AIDS. UNICEF (2002b) reported an associated poverty
rallies round to provide the care and support needed by with HIV/AIDS epidemic in Nepal among the caregivers
the child (Rotheram-Borus, Flannery, Rice, & Lester, which negatively impacted the care of vulnerable chil-
2005). In African settings, there is a collective responsi- dren affected by HIV and AIDS; most of the children
bility among families in taking care of the sick which is were faced with nutritional, health and educational
clearly reflected in the way caregivers in poorer house- challenges, and some of them were forced to take to the
holds take care of children, especially those orphaned by streets without proper care. Similarly, Human Rights
HIV and AIDS (UNAIDS 2006). Watch (2005) submitted that HIV-infected orphans were
Even though the family structure helps to provide the forced to drop out of school due to poverty of the
needed love and care for children infected with HIV and caregivers making them vulnerable as street children to
AIDS, the study findings also showed that isolation and earn a livelihood; the poverty-stricken parents could not
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© 2016 Japan Academy of Nursing Science
Japan Journal
G. Achema andofB.
Nursing Science (2016) 13, 256–264
P. Ncama Family-centered
Japan care forScience
Journal of Nursing HIV children
(2016)
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