Death and people with learning disabilities: Interventions to support clients and carers

Cathcart, F.

doi:10.1111/j.2044-8260.1995.tb01452.x

Cited by 25 publications

(25 citation statements)

References 9 publications

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“…Parkes, 1998), relating to bereavement in adult life, has indicated a manifest need for further research on the factors that affect the duration and outcome of bereavement, and on methods by which detrimental effects can be foreseen, recognised and alleviated. A review by Cathcart (1995) showed that practical interventions and resources now exist in some areas, and others are currently being developed, in order to mitigate the distressing effects of bereavement on people with learning disabilities.…”

Section: Bereavementmentioning

confidence: 99%

Working with elderly carers of people with learning disabilities and planning for the future

Hubert¹,

Hollins²

2000

Adv. psychiatr. treat

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The majority of people with learning disabilities in the UK live at home with their families, usually with their parents (Mental Health Foundation, 1996) or – more commonly in later life – with one parent, usually their mother. Nowadays, people with learning disabilities live much longer than they did in the past, with the result that there is also an expanding population of elderly parents who are continuing to care for a son or daughter well into old age.

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Section: Bereavementmentioning

confidence: 99%

Working with elderly carers of people with learning disabilities and planning for the future

Hubert¹,

Hollins²

2000

Adv. psychiatr. treat

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“…However, other people, because of their difficulties associated with their level of intellectual disabilities (for example, comprehension, communication skills, lack of supports), may display grief in alternative mannerisms, many of which have been described as 'challenging' (MacHale and Carey, 2002;Read and Papakosta-Harvey, 2004;Dodd et al, 2005). Cathcart (1995) has further argued that these 'challenging behaviours' and also possible 'psychiatric disturbances' may be the only mechanisms available to those with significant cognitive and communication impairments. Hollins and Esterhuyzen (1997) found that of 50 people with intellectual disabilities who had experienced bereavement and exhibited an array of challenging behaviours, nearly three-quarters of their carers did not attribute these behavioural changes as expressions of grief.…”

mentioning

confidence: 97%

“…It has been broadly reported that, for many people with intellectual disabilities who experience a bereavement, they can experience the same range and degrees of emotions (for example, sadness, anger, anxiety, loneliness), physical sensations (for example, hollowness in stomach, lack of energy) and behaviours (for example, sleep and appetite disturbances, withdrawal) as displayed within the non-disabled population (Oswin, 1991;Cathcart, 1991Cathcart, , 1995Read, 2005). However, other people, because of their difficulties associated with their level of intellectual disabilities (for example, comprehension, communication skills, lack of supports), may display grief in alternative mannerisms, many of which have been described as 'challenging' (MacHale and Carey, 2002;Read and Papakosta-Harvey, 2004;Dodd et al, 2005).…”

mentioning

confidence: 98%

An exploration of the support received by people with intellectual disabilities who have been bereaved

Gilrane-McGarry¹,

Taggart

2007

Journal of Research in Nursing

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Little is known about the views of the primary and secondary support offered to people with intellectual disabilities by formal carers around the time of a death of a loved one. This paper investigates the perceptions of the types of support provided by front-line staff to this population at the time of, and following, bereavement.In total, 11 people with intellectual disabilities participated in semi-structured interviews. Practical supports (for example, involvement in events surrounding the death and access to the rites of passage) provided to these individuals were reported to be positive interventions, whereas the provision of emotional support (for example, formal and informal supportive counselling) by front-line staff were cited by the participants to be lacking. The use of alternative approaches (for example, reminiscence work, the creation of a life story book/family tree, art therapy and pictorial material) was also reported to be limited.These findings highlight the need for education and training to provide front-line staff caring for people with intellectual disabilities with the insights, knowledge and skills necessary to practically and emotionally support this population who are facing the loss of a loved one. In addition, these training needs should be aligned with ongoing managerial and specialist bereavement supports, so that the specific needs of people with intellectual disabilities can be fully addressed.

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“…Finally, it has now been recognized that grief is experienced by people with mental retardation (e.g. Cathcart, 1995). Therefore, mood assessment could help monitor reactions to life-events, including bereavement, staff changes or changes in residence for people who are unable to talk about their thoughts and feelings.…”

Section: Evaluating Interventions Designed To Reduce "Challenging Behmentioning

confidence: 99%

“…Benson, Rice & Miranti, 1986;Benson, 1994) and bereavement (e.g. Cathcart, 1995). Less interest has been paid to mood and emotions amongst people with severe and profound mental retardation (Favell, Realon & Sutton, 1996).…”

Section: Introductionmentioning

confidence: 99%

The assessment of mood in adults who have severe or profound mental retardation

Ross

Oliver

2003

Clinical Psychology Review

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Empirical literature examining the emotional lives of adults with severe and profound mental retardation is limited. One area to have received attention is mood. It is proposed that the utility of assessment of mood extends beyond psychiatric diagnosis to issues such as the appraisal of quality of life for individuals with limited or no expressive language. Two themes related to the assessment of mood are evident in contemporary literature. First, attempts have been made to clarify the presentation of affective disorders, especially depression, and to improve the assessment of depressive symptomatology in adults with mental retardation. A review of current methods for assessing depression indicates significant problems with reliability and validity.There is a need to develop appropriate assessment methods for use in relation to adults with severe and profound mental retardation who are unable to self-report and behavioral methodology might be useful in this respect. Second, there is an emerging argument that the presentation of depression in adults with mental retardation, particularly in individuals with severe disabilities, includes challenging behaviors, referred to as "atypical symptoms".Methodological and conceptual issues related to this argument warrant closer examination.Finally, it is noted that research drawing on more rigorous methodology is required to interpret the emotional states of individuals with severe and profound mental retardation.

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Death and people with learning disabilities: Interventions to support clients and carers

Cited by 25 publications

References 9 publications

Working with elderly carers of people with learning disabilities and planning for the future

Working with elderly carers of people with learning disabilities and planning for the future

An exploration of the support received by people with intellectual disabilities who have been bereaved

The assessment of mood in adults who have severe or profound mental retardation

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