Informational needs of family caregivers of people with intellectual disability who require palliative care: a two-phase integrative review of the literature

McKibben, Laurie; Brazil, Kevin; Hudson, Peter; McLaughlin, Dorry

doi:10.12968/ijpn.2019.25.1.4

Cited by 3 publications

(8 citation statements)

References 30 publications

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“…There was an identified need for advance care planning for people with intellectual disabilities and participants promoted the provision of information that was anticipatory of issues that may arise in palliative care. Anticipatory information has been previously endorsed in the literature (Lazarus and Folkman, 1984;McKibben et al, 2019). Previous research also supports the assertion that knowing what to expect reduced anxiety and distress (Hudson et al, 2013;Grant et al, 2013).…”

Section: Planned Changementioning

confidence: 53%

“…The involvement of carers, professionals, and service users through co-design of this model is of utmost importance in linking theory to practice, enabling meaningful provision of support (Donetto et al, 2014). This study itself did not seek the views of the person with intellectual disability; however, McLaughlin et al (2014a) explored the perspectives of service users with intellectual disability in respect to professionals' education in palliative care, this study was included in the literature review component of this study (McKibben et al, 2019) and informed the development of the interview guide.…”

Section: Discussionmentioning

confidence: 99%

“…Focus groups sought to establish perceptions of professionals in relation to the information needs of family caregivers of people with intellectual disabilities requiring palliative care. A topic guide (Supplementary Appendix S1) was developed, informed by the literature (Carlander et al, 2011;Hudson et al, 2013;Harrop et al, 2014;Lewis, 2014;McKibben et al, 2019) to guide discussion around holistic realms of information.…”

Section: Recruitment and Data Collectionmentioning

confidence: 99%

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Determining the informational needs of family caregivers of people with intellectual disability who require palliative care: A qualitative study

et al. 2020

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Objectives People with intellectual disabilities are living longer, and many require palliative care. There is a lack of evidence regarding information needs which may exist for their family caregivers. This study aimed to determine the informational needs of family caregivers of people with intellectual disabilities who require palliative care. Methods A qualitative, exploratory design was underpinned by the Transactional Model of Stress and Coping and the Transformative Paradigm. The study involved five Health and Social Care (HSC) Trusts and two Hospices in one region of the United Kingdom. Family caregivers (n = 10) participated in individual interviews. HSC professionals’ (n = 28) perceptions of informational needs were explored within focus groups (n = 6). Results Family caregivers reported information needs chiefly concerning the disease, financial entitlements, and practical support which could change over the disease trajectory. Findings evidence the expertise of long-term family caregivers, prior to the end of life. Palliative care and intellectual disability teams acknowledged their role to work in partnership and facilitate access to information. Recommendations were mapped onto a co-designed logic model. Significance of results New insights into the specific informational needs of this family caregiving population. A co-designed logic model presents these needs and how they may be addressed. Central co-ordinators have been advocated for these caregivers. This model could have international applicability for similar family carers, supporting people with other disabilities or cognitive impairment, and should be further explored.

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Section: Planned Changementioning

confidence: 53%

Section: Discussionmentioning

confidence: 99%

Section: Recruitment and Data Collectionmentioning

confidence: 99%

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Determining the informational needs of family caregivers of people with intellectual disability who require palliative care: A qualitative study

et al. 2020

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“…Research in this field indicates that informal carers' attainment is affected due to insufficient study time, lack of attendance and socialisation, tiredness and loss of focus as a result of caring duties [16,68,[70][71][72]. Correspondingly, this investigation finds that YICs present queries regarding attainment (a university degree and certain career etc.…”

Section: Yics' Information Needsmentioning

confidence: 82%

Young informal carers’ information needs communicated online: Professional and personal growth, finance, health and relationships

Koya

Chowdhury

Green

2022

Journal of Information Science

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Young informal carers (YICs) are non-professional young individuals providing care and support in various forms, usually to immediate family members, afflicted from a diverse range of both long- and short-term health conditions. Although there is significant knowledge about the information needs of adult carers in general, information needs and information seeking characteristics of the YICs’ community are understudied and are different. This study aims to identify the information needs of YICs communicated over the Internet and understanding their information seeking characteristics through a three-stage qualitative content analysis of posts written by YICs on two notable Internet forums. The analysis of 323 posts dated between March 2010 and April 2019 finds YICs’ needs are categorised by two types of online expression of needs, situational and information. Situational needs are illustrations of current difficult conditions and information needs are direct requests for information. Under situational and information needs, we identify four types of needs expressed: personal and professional growth, health (self and caree), finance and relationships. In addition, the findings indicate 94.36% posts in the sample as situational needs, which depict the uncertainty experienced by YICs under caring circumstances. The findings can assist government organisations and charities by improving the indexing of advice pages of their websites appropriate to the YICs’ search words, better availability of information and advertising, in addition to building quality mobile applications or digital support tools.

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“…24–26 This is important given that family caregivers often provide most of the care to their loved one but may feel unequipped. 27–30…”

Section: Introductionmentioning

confidence: 99%

Evaluating a partnership model of hospice enabled dementia care: A three-phased monitoring, focus group and interview study

McLaughlin

Hasson²,

Reid

et al. 2022

Palliat Med

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Background: People with dementia and their caregivers often lack equitable access to hospice care which is a concern internationally. Domains of best practice in palliative care for this population exist and hospices are urged to become dementia friendly. Aim: This study aimed to evaluate the model of ‘Hospice Enabled Dementia Partnership’ mapped to international domains of best practice. Design: Three-phased monitoring, group interview and individual interview study using a formative evaluation framework. SettingParticipants: The partnership model was a collaboration between a large specialist palliative care hospice, a dementia charity and a Health Care Trust in the United Kingdom. Service documents were subjected to documentary review of monitoring activity and key indicators of service success. Group interviews and individual interviews took place with family carers ( n = 12), health care professionals involved in delivering the service ( n = 32) and senior professionals ( n = 5) responsible for service commissioning in palliative or dementia care. Results: One hundred people with dementia were referred to the service between May 2016 and December 2017. Thirty-eight of the 42 people who died, achieved their preferred place of care and died at home. Four themes were derived from the data ‘Impact of Dementia’, ‘Value of the Service’, ‘Information and Learning Needs’ and ‘Working in Partnership’. Conclusions: Positive outcomes resulted from this best practice model; achievement of preferred place of care and death at home, dual benefits of therapies for patients and families and partnership in cross working and learning between services. Replication of this model should be considered internationally.

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Informational needs of family caregivers of people with intellectual disability who require palliative care: a two-phase integrative review of the literature

Abstract: Informational needs of family caregivers of people with intellectual disability who require palliative care: a two phase integrative review of the literature Short Title: Information and palliative caregiving in intellectual disability Article Type: Review

Cited by 3 publications

References 30 publications

Determining the informational needs of family caregivers of people with intellectual disability who require palliative care: A qualitative study

Determining the informational needs of family caregivers of people with intellectual disability who require palliative care: A qualitative study

Young informal carers’ information needs communicated online: Professional and personal growth, finance, health and relationships

Evaluating a partnership model of hospice enabled dementia care: A three-phased monitoring, focus group and interview study

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