support needs of caregivers: case studies in south africa

Support needs of caregivers: case studies inSouth Africa

P.T. Sandy1 RMN, BSc (Hons), PGDipED, PGCertED, MSc, PhD, J.C. Kgole2 RN,DLitt et Phil & T.R. Mavundla3 RN, D Cur (Psychiatric-Mental Health Nursing)1 Senior Lecturer, 2 Doctoral Candidate, 3 Professor, Health Studies, University of South Africa, Pretoria, South Africa

SANDY P.T., KGOLE J.C. & MAVUNDLA T.R. (2013) Support needs of caregivers: case studies in SouthAfrica. International Nursing Review 60, 344–350

Background: Limpopo is one of the poorest provinces in South Africa with limited resources to support

caregivers and individuals who are learning disabled. Offering support and care to children with learning

disabilities can be a complex and difficult task to achieve. Caregivers carry great responsibility for ensuring the

needs of children in their care are met. Such responsibility can generate great amounts of stress that may

negatively impact caregivers’ day-to-day functioning. Yet, research concerning how to support caregivers in

meeting the needs of this group of children in Limpopo has never before been carried out.

Aim: To investigate the support needs of caregivers caring for children with learning disabilities.

Methods: A case study design of three families of children with learning disabilities was used. Data were

generated in two phases using a semi-structured interview format. In phase 1, participants were interviewed in

their homes. Phase 2 relates to follow-up interviews of participants in a community clinic. All data were

analysed using Interpretative Phenomenological Analysis.

Findings: The study identified a range of support needs for caregivers. Examples of these include financial,

emotional, practical support, training, respite care, affiliate stigma and partnership working.

Discussion: Caring for children with learning disabilities was perceived as difficult and frustrating, yet

rewarding. This difficulty was noted to be compounded by caregivers’ lack of skills and knowledge of caring

for these children. They also had experiences of stigma, which sometimes involves overt acts of discrimination

and social exclusion that further added to their frustration.

Conclusions: The study findings have implications for practice and policy. Regular training and support

should be offered to caregivers in order to broaden their understanding of learning disabilities and enhance

their caring ability. Nurses are the main source of training and support and offer these during clinic-based

engagement and home visits.

Keywords: Caregivers, Case Study, Children, Learning Disability, South Africa, Support Needs

BackgroundLimpopo is one of the poorest provinces in South Africa withlimited resources to support caregivers and individuals with dis-abilities, including those who are learning disabled. Limpopoprovince has one of the highest incidence and prevalence ofpeople living with human immunodeficiency virus (HIV) andAcquired Immuno-Deficiency Syndrome (AIDS) in South

Correspondence address: Dr Thomas Sandy, Health Studies, University of SouthAfrica, 6-184 Theo van Wijk, Muckleneuk Ridge, Pretoria 0003, South Africa; Tel:+27(12)429-8224 (Office); +27(17)202-715 (Mobile); Fax: +27(12)429 6688;E-mail: [email protected].

Funding: This research received no specific grant from any funding agencyin the public, commercial or not-for-profit sectors.Conflict of interest: No conflict of interest has been declared by the authors.

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Clinical

© 2013 The Authors. International Nursing Review © 2013 International Council of Nurses 344

Africa (Setswe 2009). Tuberculosis (TB) and multiple drug-resistant tuberculosis (MDR-TB) tend to occur with HIV infec-tion and AIDS. This coexistence compromises the health andimmune system of people living with these infections andcauses death within few weeks of being infected (Setswe 2009).It is therefore not usual to find single-parent families in theLimpopo province.

A census conducted on the prevalence of disability in SouthAfrica revealed that 5% of its population lived with a form ofdisability in 2001 and 2005 (Statistics South Africa 2005). Threeper cent of this population was reported to be children withdiagnosis of mild to severe forms of learning disabilities. Thisfigure is expected to grow on a yearly basis because of increasedlife expectancy. Most children who are learning disabled live inthe community with caregivers for ongoing care and support(Keeley & Clarke 2002; Sen & Yurtsever 2007). In addition totime and provision of physical care, caregivers usually dedicatesignificant amount of their personal financial resources tosupport children in their care (Al-Krenawi et al. 2011). Forfamilies with other children, such uneven use of resources couldlead to expression of discontent that may generate stress in car-egivers (McConkey et al. 2008).

In South Africa, caregivers are the primary persons for theprovision of care and support to individuals with learning dis-abilities. This became more prominent following the establish-ment of the primary health care approach (PHC), a function ofthe introduction of the White Paper in 1997, Transformation ofthe Health Service in South Africa (Mavundla et al. 2009). Theprincipal aim of the PHC is to ensure the provision of compre-hensive and holistic care to individuals in the community,including people with disabilities. In Limpopo, caregivers andthe cared-for have access to community-based PHC clinics forsupportive counselling and prescribed medication. During thesevisits, they mainly engage with nurses. Nurses do play a crucialrole in the PHC service. In rural areas, they are often describedas ‘mini doctors’ with the remit of offering education and train-ing as well as diagnosing and treating common illnesses(Mavundla et al. 2009). In South Africa, nurses are hardlytrained in the provision of psychosocial care, and so the carethey provide remains largely biomedical in nature (Van Niekerk& Sanders 1997).

Defining learning disability

A number of terms such as mental handicap and mental sub-normality have been used over the years to describe people withintellectual impairments. The use of these terms does not onlyindicate healthcare professionals’ perceptions of these individu-als, but it also reflects an ongoing fear of assigning labels thatmay stigmatize this group of people. Healthcare professionals

are always exploring ways of creating a positive image for peoplewho are marginalized in their societies, such as those with intel-lectual impairments (Corbett 2007; Townsend 2003). This questresulted in a collaborative partnership between healthcare pro-fessionals, sufferers of mental impairment and their families.This partnership led to the development of a less stigmatisingterm, learning disability, commonly used in Europe and otherparts of the world, such as South Africa, to describe people whoare intellectually impaired (Clark & Griffiths 2008). Accordingto the Department of Health (DH; 2001, p. 14), the term learn-ing disability includes a• significantly reduced ability to understand new or complexinformation, to learn new skills (impaired intelligence);• reduced ability to cope independently (impaired social func-tioning); and• disability that started before adulthood, with a lasting effecton development.

Although it is explicitly stated in these accounts that peoplewith learning disabilities may experience difficulties living inde-pendently, the social model adopted in the Western world andSouth Africa suggests that people with these difficulties areexpected to live a normal life in their communities (Ali et al.2012). This expectation can be achieved if they are supported bytheir families (Clark & Griffiths 2008). The deinstitutionaliza-tion of mental and learning disability care, which was a criticalpart of the transformation of the South African healthcareservice, supports this view. Deinstitutionalization was thereplacement of institutional or inpatient settings withcommunity-based alternatives for the care of people with learn-ing disabilities and/or mental health problems (Bachrach 1996;Mavundla et al. 2009). The adoption of this strategy made fami-lies to become the main providers of care, with healthcare pro-fessionals assuming a secondary role.

Caring for individuals who are intellectually disabled cangenerate enormous amount of stress in caregivers, particularly if‘caring’ takes place over a protracted period of time (Mavundlaet al. 2009; Merrifield 2011). Yet, there is a paucity of literaturethat discusses how caregivers are supported in their roles ascarers for individuals with learning disabilities. This paperreports on a study that intends to help fill this gap by exploringsupport needs of caregivers.

It is known that stresses of caregivers can arise from thebehaviours presented by children in their care. However, thereis no literature on parents’ experiences in South Africa and, forevidence we have until now, had to rely on studies carried outin the West. For example, children with learning disability candisplay a range of challenging behaviours, which may includeaggression and self-harm (Merrifield 2011). Exposure to thesebehaviours can be overwhelming and threatening to observers

Support needs of caregivers 345

© 2013 The Authors. International Nursing Review © 2013 International Council of Nurses

(Sandy & Shaw 2012). Caregivers may react to these experi-ences by distancing themselves or withdrawing their attentionfrom the cared-for (Royal College of Nursing (RCN) 2006).These experiences may also have a negative impact on thequality of care caregivers offer to children. Such reactions canbe attributed to lack of or limited knowledge and skills onhow to respond to behaviour that challenges, a view alsoacknowledged by Sen & Yurtsever (2007). Taking this intoaccount, it is essential that caregivers’ needs are frequentlyassessed and provided with regular support in order to developunderstanding of learning disabilities as well as offer timelyand effective care to children in their care. Despite this urgentrequest, caregivers in Western studies are infrequently sup-ported by healthcare professionals experienced in care provi-sion for children with learning disabilities (McConkey et al.2008). It is therefore not surprising for caregivers to frequentlypresent with symptoms of anxiety, depression and burnout(Merrifield 2011). Frequent experiences of these symptomsmay not only lead to the development of negative attitudes,but it may affect the quality of care provision of caregivers(Sandy & Shaw 2012). Despite these findings, there is currentlyno study in South Africa that has explored the support needsof caregivers for people with learning disabilities. Hence,this study, which seeks to explore the support needs ofcaregivers, as identifying these would lead to the developmentof a training programme. If implemented, such a programmecould result in the provision of tailor-made assistance foraddressing the stresses and anxieties that caregivers mayexperience.

Methods

Participants

A case study design of three families of children with learningdisabilities was used. These families were purposively selectedfrom families with children living with learning disabilitieswho attended, on a monthly basis, a community clinic in theLimpopo province of South Africa for supportive counsellingand prescribed medication. The three families selected haveattended this clinic for over 10 years. They are therefore famil-iar with the support services available and approaches toquality care for their children. Two of the families constitutedboth parents and four children. A third family had four chil-dren headed by a single mother. One child from each family,average age of 15 years, had a diagnosis of learning disability.The other siblings were between the ages of 12 and 17 years. Itis critical to state that only parents of the families took part inthe study.

Data collection

Data were collected in two phases in 2010 using a semi-structured interview guide designed according to the Interpreta-tive Phenomenological Analysis guidelines (Smith 2005). Inother words, the schedule, which also included prompts, wasprepared to include mainly open questions with the intention ofencouraging caregivers to freely tell their stories about supportand empowerment needs. This was done to help guide the inter-view encounters and to engage in exploration of emergingissues with participants.

Phase 1 utilized individual interviews with caregivers of onefamily at a time in their home environment. Interviews typicallylasted for 55 min to an hour. Caregivers’ understanding ofsupport needs and the degree and nature of support theyneeded were explored. Phase 2 relates to follow-up interviewsconducted with parents at the community clinic. The essence ofthese interviews was to explore and clarify issues discussed atthe initial interviews.

At the end of each interview, some time was spent debriefingcaregivers. The possible impact of the interview process on car-egivers was explored by asking questions such as ‘did the inter-view affect you?’ No caregiver experienced distress either duringor after the interviews. All interviews were audiotaped to ensureaccuracy and completeness.

Ethical considerations

Approval to conduct the study was granted by the authors’institution Research Ethics Committee. Permission to conductthe study was also sought and obtained from the Department ofHealth of the Limpopo province, as the community clinic wasmanaged by this department. The interview process was alwaysinitiated by provision of detailed explanation of the aim andprocedures of the study. All caregivers agreed to take part andprovided written consent following this explanation. In addi-tion to assuring confidentiality and preserving anonymity, car-egivers were offered opportunity to ask questions about anyissue they would like clarification with relating to the researchand its process.

Data analysis

All interviews were transcribed verbatim and transcripts wereanalysed manually using Smith’s (2005) IPA framework. Analy-sis proceeded in parallel with the interviews, and was conductediteratively throughout the interview period until category satu-ration was achieved.

FindingsSix superordinate themes emerged from the interviews’ data.These were (1) caring: a stressful experience, (2) partnership

346 P. T. Sandy et al.


working, (3) training and education, (4) supervision, (5) finan-cial assistance and (6) discriminatory practices. These themeswere further divided into subthemes identified in bold italics.Extracts from participants’ narratives are used to support dis-cussions presented. Data from male and female caregivers areidentified by the initials ‘M’ and ‘F’, respectively.

Caring: a stressful experience

A commonly reported opinion of all caregivers is that caring forchildren who are learning disabled is both stressful and chal-lenging. They claimed that it usually becomes more stressfulwhen they assume parental responsibilities of engaging inhousehold chores, such as cleaning. Most parents referred tothis experience as a double-trouble caring niche.

Although I am always very busy with my child, I also have tofind time to sweep, clean the house and its surroundings. Ifind this very exhausting. (F)

For most part, all caregivers repeatedly associated their expe-riences of stress with lack of respite from their caring responsi-bilities, which they described as a round-the-clock care.Caregivers also talked about emotions such as anger, frustrationand helplessness. Most of them considered these emotions asnormal reactions when caring for people with learning disabili-ties. They also believed that these emotions are generally evokedby frequent exposure to challenging behaviours like self-harm.Although all caregivers claimed to sometimes feel angry at thecared-for, they reiterated on a number of occasions that theiranger was mainly focused on healthcare professionals for failingto offer adequate support. They also added that there waslimited involvement in the decision-making processes of thecare of their children. It was apparent from all caregivers thatexpression of anger was a cry for support and request to workwith healthcare professionals.

Partnership working

Meeting the health and social needs of individuals with learningdisabilities is a complex and difficult task. It therefore requiresrelevant healthcare professionals (psychiatrist, nurses, socialworkers and psychologists) to work in partnership with caregiv-ers and people with learning disabilities (Corbett 2007). Appar-ently, this is not reflected in the experiences of caregivers of thisstudy as all of them talked about limited discussions relating tocare provision with healthcare workers.

At the clinic, they usually give us the children’s medicationswith little or no explanation on how the medications work. Iwould like to be informed about the medication of my child.(F)

Caregivers expressed frustration due to limited informationabout their children’s illness and treatment. Although limited,it was reported that they engage more with nurses relative toother professionals groups, psychologist, social workers andpsychiatrists. The responsibility for quality care depends onhealthcare professionals, children with learning disabilities andcaregivers working together. Caregivers therefore need to worktogether with healthcare workers as well as have access toinformation about available services and treatment of thecared-for. Most caregivers reiterated on few occasions thathaving access to relevant information about care provisionmakes them feel empowered as well as places them in a uniqueposition to confidently act on the behalf of the cared-for(advocacy) as and when necessary. However, it is apparentfrom the narratives that caregivers have limited skills andknowledge of learning disability and how to care for individu-als with this diagnosis.

Training and education

Lack of or limited knowledge of learning disabilities was themain cause identified by caregivers for their experiences of dis-tress and anxiety when caring for children with this diagnosis.It was therefore not surprising to note during interviews thatall caregivers frequently requested training in this area of clini-cal practice. The need for training was reiterated by two car-egivers who specifically stated that they have low healthliteracy in learning disability; meaning, their understandingof what learning disability is and how to support individualswith this condition was inadequate and influenced by culturalbeliefs.

The doctors in the hospital said that my child had a conditionnamed hydrocephalus because he had a ‘big head’. I stoppedthe treatment prescribed and took him to a traditional healerfor traditional medicine that I have faith in. (F)

The need for a whole organization approach to training wasraised a couple of times during interview discussions. Caregiv-ers believed that training with healthcare workers would enablethe latter to understand their needs and those of their children.Some caregivers also offered suggestions of topics that may beincluded in a planned training programme. They claimed thattraining programmes should include types of communicationand activities that would be meaningful to their children.

Working with children who are learning disabled can beemotionally and physically exhausting. Thus, in addition toacquiring knowledge and skills, caregivers may require a sup-portive space for reflection to critically examine the impact oftheir role as carers both on themselves and the cared-for.



Supervision

It is apparent from caregivers’ narratives that supervisionshould be an integral part of practice for individuals workingwith people living with learning disabilities.

I need to see someone on a monthly basis experienced incaring for these children. It will enable me to let the ‘steamout’ as well learn how to do things better. (M)

Although caregivers were offered supportive counselling on amonthly basis at a community clinic, it appears as if they needadditional forums to safely express their feelings. Some caregiv-ers spoke of creating a body system or mentoring approach,which would involve occasional meetings with experiencedcarers to talk about their caring experiences.

We need a body system or mentor system. It will help us tosupport ourselves. But this may need money. (M)

Financial assistance

All caregivers except for two were from low-income families. Onmany occasions, the caregivers from low-income familiesdescribed their financial needs as part of a double-trouble. Thisdescription was related to being financially poor and having theresponsibility to care for children who are physically, mentallyand socially demanding. Although the South African govern-ment offers grant to children with learning disabilities, somecaregivers clearly stated that the money they were offered wasnot sufficient to meet the daily economic needs of this group ofchildren. According to some caregivers, being unemployedand/or unable to work because of the need to offer 24-h carecontributed to their financial difficulties.

My child has no clothes for winter. The money I receive on amonthly basis is not enough to buy clothes. Not being able towork adds to my financial problems. (M)

Clothes were not the only items associated with financial con-straints reported by caregivers. Food shortage and deprivationof educational needs were also discussed during interviews.Added to this, most caregivers expressed experiences of affiliatestigma and social exclusion because of their close associationwith children who are learning disabled (Mak & Cheung 2008).

Discriminatory practices

Children with learning disabilities and their carers are oftenstigmatized, and as a result, exposed to discriminatory acts,labelling and prejudice that are usually embedded with nega-tive attitudes from both healthcare workers and members ofthe public (Ali et al. 2012).

I know labelling is crucial when it comes to disability. Mychild is labeled as aggressive. People including other childrentreat us different. They do not want us in their midst. (F)

Discriminatory acts, labelling and prejudice were alsoclaimed to take place in family homes. Disabled persons moreoften than not suffer from discrimination because of prejudiceand ignorance (Statistics South Africa 2005). Only very fewpeople and community organizations are willing to embracethem in their activities. Generally, they experience social exclu-sion. This is a burden for caregivers as they are restricted toa small number of places they can visit or attend with theirchildren.

DiscussionThis is the first study to explore support needs of caregivers forchildren with learning disabilities in the Limpopo province ofSouth Africa. Most of the families who took part in this studywere considered poor with unemployed caregivers who reliedon the government for financial support. One of the familieswas headed by a single mother because her husband died ofMDR-TB, and HIV and AIDS infections.

It is highlighted in the extant literature and outcome of thisstudy that caring for children with learning disabilities andbehaviour that challenges can be an extremely difficult task toundertake (Marcellus 2007). The participants reiterated in theirstories how they were physically and mentally overwhelmed andstressed by caring for their learning-disabled children. Someeven reported of negative impacts on social functioning as the24-h care required prevents them from engaging in activitiesoutside their family homes. Participants’ home environmentswere noted to be untidy, a function of their busy daily caringschedules for addressing the needs of their children and behav-iour that challenges.

Challenging behaviour is not a diagnosis. Some children werereported to have periods of behaviour that challenges, such asaggression and violence that may put themselves and others atrisk. For other children, it was claimed to be more of a long-standing problem that may have been evident from childhood.These behaviours are not under the control of the individualsconcerned; they are largely due to their lack of ability to verballyexpress themselves (Emerson et al. 2012). Understanding theseissues and acquiring knowledge of learning disabilities andneeds of children with this condition may alleviate stresses car-egivers experience as well as lead to effective care provision(Marcellus 2007). Participants in our study acknowledgedlimited knowledge of learning disabilities and thus requested fortraining in this area of practice with emphases on medicationmanagement, communication, use of meaningful activities,



available support services and how to offer day-to-day practicalsupport. Although, caregivers expressed willingness and com-mitment to provide care, this outcome indicates a lack of readi-ness for their role. They are therefore vulnerable to beinginundated by their children’s challenging behaviours and todevelop attitudes that may have a negative impact on careoffered. However, caregivers’ request for a practical-based train-ing and education was appropriate because of their low literacylevel that includes health literacy.

Health literacy refers to an individual’s achievement of a levelof knowledge, personal skills and confidence to take action toimprove his or her life (Nutbeam 2008). Caregivers were notedduring interviews to experience problems understanding andarticulating basic health information about their children.Limpopo is one of the provinces in South Africa with a lowhealth literacy level of its inhabitants and this is particularly thecase for women who are always primary caregivers (StatisticsSouth Africa 2005). Acknowledging this, it is critical for the paceof any planned training and education to be dictated by thelearning needs, styles of caregivers and outcome of trainingneeds assessment. In addition to the need for education andtraining, participants were acutely aware of their need for finan-cial support as they were unemployed and solely dependent onthe disability grant offered by the government to meet their eco-nomic demands.

People with learning disabilities are one of the most sociallyexcluded groups and encounter stigma, prejudice and discrimi-nation (Mak & Cheung 2008). Stigma may also affect those whoare closely associated, such as family member and healthcareworkers that work with these individuals (Larson & Corrigan2008). Such encounters, as reported by caregivers of this study,may result in negative self-evaluations, withdrawal and socialexclusion, which in turn may contribute to experiences of psy-chological distress and ineffective care provision. Thus, the needfor forums, such as supervision, where caregivers can safely ven-tilate their feelings, cannot be overemphasized. The develop-ment of a policy may ensure regular supervisory support forcaregivers.

It is apparent in the narratives that care provision for childrenwith learning disabilities require a multidisciplinary approachwith the cared-for and caregivers occupying a central position.Outcome of the study revealed that it is difficult if not impossi-ble for all the members of multidisciplinary team (which consti-tute nurses, social workers, psychiatrists, psychologists andoccupational therapists) to be available around the clock inoffering care. Taking this into account, the 24-h responsibility ofcaregivers and expectation for quality care provision, it isimperative that caregivers are empowered by members of themultidisciplinary team with the necessary skills and knowledge

of how to care for their children. Hence, the need for robustpractice-based team approach education and training that takesinto account the needs of caregivers and people they care for. Inessence, this involves healthcare workers and caregivers trainingtogether using practical examples or problems, framed in theforms of scenarios, experienced by the latter as learning materi-als. For example, if your child is behaving this way, how wouldyou respond? A caregiver may say ‘my child always make thesesort of signs, what do think he is trying to say?’ Adopting thisapproach may enhance caring and support skills of caregivers.People with learning disabilities are people first and theydeserve to be treated with respect and dignity. To achieve this,caregivers who spend most of their time with these individualsneed to be adequately trained and supported.

Limitations

The authors acknowledged that there are some limitations tothis study, affecting its applicability to caregivers of childrenwith learning disabilities across all provinces in South Africa. Itwas conducted in a single province, Limpopo, with a smallsample size. Thus, the findings of the study may not be applica-ble in other provinces of South Africa, but they are certainlytransferable to other group of carers in this country and thecontinent of Africa, as they offer valuable insights for under-standing support and empowerment needs of the same.

ConclusionsFamily caregivers are the main carers for children with learningdisabilities living in the community. This study recognized theimportance of supporting family caregivers when assumingtheir caring responsibilities. It highlighted the need for caregiv-ers to spend, at least on some occasions, time outside theircaring role, as doing so would enable them to maintain generalhealth and well-being. Meeting this aspect of support need willincrease carers’ ability to continue offering support and care,and hence, ensuring the cared-for are provided with qualitycare.

Caring for children with learning disabilities is a demandingand complex task. It is revealed in the extant literature and inthis study that caregivers generally lack the necessary skill andknowledge of supporting these children. There is therefore agreat need for caregivers to be supported and empowered inorder to provide relevant and appropriate care to these childrenregardless of living in under-resourced or rural areas. Hence, theneed for the provision of tailor-made training and educationprogrammes for caregivers taking into account the levels ofhealth illiteracy.



AcknowledgementsThe authors gratefully acknowledge the caregivers who tookpart in this study. They are also grateful to the Department ofHealth of the Limpopo Province of South Africa for the supportit offered throughout the study period.

Author contributionsTS: conception of design, data analysis, interpretation, draftingand revising the article, and critical revision for intellectualcontent; JCK: conception of design, data collection and analy-sis); TRM: data analysis and supervision.

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