Stress and coping in fathers with severely disabled institutionalised children

Abstract

English: This study deals with the stress and coping of parents with severely handicapped, institutionalised children, with specific emphasis on the experience of the father. Little research has been directed at these parents. In this study their stress and coping is considered according to their material, psychological and social resources and their coping strategies. The aim was to reveal how the fathers differ from the mothers in terms of their perceived stress, resources and coping strategies and to provide guidelines to professional helpers who assist parents. Parents of handicapped children experience ongoing and complex grief and recurrent distress-generating crises. These processes impact on the parents’ informal and formal support systems. The extent to which parents are able to find meaning in their loss and manage the tension generated by their various crises may have predictive value in terms of their adjustment. This study is aligned with the tenets of Positive Psychology and stress is approached from a transactional point of view. In particular, the importance of psychological health (Salutogenesis) and strength (Fortigenesis) is emphasised and the role of cognitive and emotional appraisal of the stressor and the stress-reducing function of mediators, such as resources (internal and external) and coping (strategies and behaviours) is seen as central to the outcome of the tension management process. A review of the relevant literature shows that certain child characteristics, such as age, severity of the handicap, gender, behavioural difficulties, care-giving demands, the presence of another handicapped child and cultural factors affect parental stress. Indications are that care-giving demands are the greatest child-related source of parental stress. Certain parental characteristics, such as age, health and income also act as mediators of stress. Previous studies identify internal resources, such as Sense of Coherence, personality characteristics, positive beliefs, religion, history of pre-crisis management, perceived stress and the perceived burden of care as mediators of stress in parents of handicapped children. As far as external resources are concerned, informal support systems such as the spousal relationship, siblings, close family and friends, extended family and neighbours, other parents of handicapped children and respite care are identified as possible mediators of stress. Of these, the spousal support and the support from close friends and family seems to have the greatest stress-reducing effect. Formal support systems, such as support services, associations, organisations, professionals and care facilities are not seen by parents as primary sources of support. Coping behaviours and strategies also function as mediators of stress. Effectively coping parents maintain a relatively normal lifestyle, engage in warm, secure and open spousal and family relationships. They seek further personal development, stay involved with their children, utilise their support systems and follow a planned, practical and problem-focused strategy. In this study 77 parents of severely handicapped, placed children, including 12 couples, were examined by means of the Questionnaire for Resources and Stress, The Perceived Stress Scale, The Sense of Coherence Scale, the Fortitude Questionnaire and the COPE Inventory. Results show that (a) the parents with high levels of perceived stress will be more prone to make negative appraisals of their severely handicapped child, their internal stress-reducing ability and of their available social support systems, (b) the father may be more vulnerable than the mother due to his dependence on the mother as his main source of social support and (c) the father with high levels of perceived stress may be more vulnerable than the mother with high levels of perceived stress. Findings highlight the need for intervention of psychologists in order to assist both parents to fulfil demanding and mutually supportive roles.

Afrikaans: Hierdie ondersoek handel oor die stres en aanpassing van ouers met erggestremde geïnstitusionaliseerde kinders. Daar word veral aandag gegee aan die belewenis van die vader. Min navorsing is nog hieroor gedoen. Bogenoemde onderwerp word bestudeer aan die hand van ouers se materiële, psigologiese en sosiale hulpbronne asook hul aanpassingsvaardighede. Dit was een van die hoofoogmerke van hierdie ondersoek om die verskille tussen ouers ten opsigte van hul waargenome stres, hulpbronne en aanpassingsvaardighede bloot te lê en om, aan die hand daarvan, riglyne aan professionele helpers te verskaf. Ouers van gestremde kinders ervaar ‘n herhalende en komplekse rouproses en die opeenvolging van streswekkende krisisse. Hierdie prosesse het ‘n impak op hul informele en formele ondersteuningstelsels. Die mate waarin die ouers hul verlies sinvol kan verwerk en hul krisisverwante stres beheers, mag hul uiteindelike aanpassing voorspel. In hierdie studie word die uitgangspunte van Positiewe Sielkunde onderskryf. Stres word benader vanuit ‘n transaksionele oogpunt. Die belang van sielkundige gesondheid (Salutogenese) en sterkte (Fortigenese) word beklemtoon. Daar veral aandag gegee aan die sentrale rol van die kognitiewe en emosionele interpretasie van die stressor en die stresverminderende funksie van mediators (intern en ekstern) en aanpassing (strategieë en meganismes) in die streshanteringsproses. Verskeie kenmerke van die gestremde kind, soos ouderdom, graad van gestremdheid, geslag, gedragsprobleme, versorgingsvereistes, nog ‘n gestremde kind in die gesin en kulturele faktore ‘n impak het op ouerlike stres. Veral die versorgingsvereistes hou verband met ouerlike stres. Seker ouerlike kenmerke, soos ouderdom, gesondheid en inkomste speel ook ‘n rol as mediators van stres. Vorige ondersoeke identifiseer verskeie interne hulpbronne, soos koherensiesin, persoonlikheidstrekke, positiewe opvattings, godsdiens, geskiedenis van vorige aanpassing, waargenome stres en waargenome versorgingsvereistes as mediators van stres. Met betrekking tot eksterne hulpbronne, word informele ondersteuningstelsels soos die egpaarverhouding, kinders, naby-familie en vriende, veraf-familie en bure, ander ouers met gestremde kinders en kinderversorgers vermeld. Van hierdie sisteme speel die egpaar en naby-familie die belangrikste stresverminderende rol. Formele ondersteuningstelsels, soos ondersteuningsdienste, verenigings, organisasies, professionele helpers en versorgingsoorde word nie as primêre stresverminderende hulpbronne genoem nie. Aanpassingstrategieë en meganismes dien ook as mediators van stres. Goedaangepaste ouers poog om ‘n relatief normale leefwyse te handhaaf en streef na oop, veilige en warm gesinsverhoudings. Hierdie ouers is steeds ingestel op hul eie ontwikkeling, hul betrokkenheid by hul kinders en hul handhaaf ‘n beplande, praktiese en probleem-oplossende benadering. In hierdie ondersoek is 77 ouers van erggestremde kinders, insluitend 12 egpare, betrek. Daar is gebruik gemaak van die Questionnaire for Resources and Stress, die Perceived Stress Scale, die Sense of Coherence Scale, die Fortitude Questionnaire en die COPE Inventory. Die hoofbevindinge is dat (a) ouers met hoë vlakke van waargenome stres meer geneig is tot ‘n negatiewe evaluering van hul gestremde kind, hul eie innerlike streshanteringsvermoë en hul sosiale hulpbronne, (b) die vader meer kwesbaar is as die moeder weens sy aanwending van haar as sy hoof sosiale ondersteuningsbron en (c) die vader met hoë vlakke van waargenome stres meer kwesbaar is as die moeder met hoë vlakke van waargenome stres. Hierdie bevindinge benadruk die noodsaaklikheid van sielkundige intervensie wat ouers in staat sal stel om hul veeleisende en wedersydse ondersteunende rolle te vervul.