2,850
Views
37
CrossRef citations to date
0
Altmetric
Original Articles

Advanced multiple sclerosis and the psychosocial impact on families

, &
Pages 113-127 | Received 19 Apr 2009, Accepted 19 Aug 2009, Published online: 18 Feb 2010

References

  • Abma , TA , Oeseburg , B , Widdershoven , GAM , Goldsteen , M and Verkerk , MA . 2005 . Two women with multiple sclerosis and their caregivers: Conflicting normative expectations . Nursing Ethics , 12 ( 5 ) : 479 – 492 .
  • Aronson , KJ . 1997 . Quality of life among persons with multiple sclerosis and their caregivers . Neurology , 48 ( 1 ) : 74 – 80 .
  • Boeije , HR , Duijnstee , MSH , Grypdonck , MHF and Pool , A . 2002 . Encountering the downward phase: Biographical work in people with multiple sclerosis living at home . Social Science and Medicine , 55 : 881 – 893 .
  • Bogosian , A , Moss-Morris , R , Yardley , L and Dennison , L . 2009 . Experiences of partners of people in stages of multiple sclerosis . Multiple Sclerosis , 15 : 876 – 884 .
  • Bolas , H , van Wersch , A and Flynn , D . 2007 . The well-being of young people who care for a dependent relative: An interpretative phenomenological analysis . Psychology and Health , 22 ( 7 ) : 829 – 850 .
  • Borasio , GD and Voltz , R . 2005 . Commentary: Palliative care in neurology . Journal of Palliative Care , 21 ( 3 ) : 188 – 189 .
  • Bowen , C . 2007 . Family therapy and neuro-rehabilitation: Forging a link . International Journal of Therapy and Rehabilitation , 14 ( 8 ) : 344 – 349 .
  • Brewin , T . 1996 . Relating to the Relatives: Breaking bad news communication and support , Oxford : Radcliffe Medical Press .
  • Buchanan , RJ , Martin , RA , Wang , S and Ju , H . 2004 . Analyses of nursing home residents with multiple sclerosis at admission and one year after admission . Multiple Sclerosis , 10 : 74 – 79 .
  • Buhse , M . 2008 . Assessment of caregiver burden in families of persons with multiple sclerosis . Journal of Neuroscience Nursing , 40 ( 1 ) : 25 – 31 .
  • Charmaz , K . 2007 . “ Grounded theory ” . In Qualitative psychology: A practical guide to research methods , 2nd , Edited by: Smith (Ed.) , JA . 81 – 111 . London : Sage .
  • Cheung , J and Hocking , P . 2004 . The experience of spousal carers of people with multiple sclerosis . Qualitative Health Research , 14 ( 2 ) : 153 – 166 .
  • Coles , AR , Pakenham , KI and Leech , C . 2007 . Evaluation of an intensive psychosocial intervention for children of parents with multiple sclerosis . Rehabilitation Psychology , 52 ( 2 ) : 133 – 142 .
  • Corbin , JM and Strauss , AL . 2007 . Basics of qualitative research: Techniques and procedures for developing grounded theory , 3rd , London : Sage .
  • Courts , NF , Newton , AN and McNeal , LJ . 2005 . Husbands and wives living with multiple sclerosis . Journal of Neuroscience Nursing , 37 ( 1 ) : 20 – 27 .
  • Cross , T and Rintell , D . 1999 . Children's perceptions of parental multiple sclerosis . Psychology, Health and Medicine , 4 ( 4 ) : 355 – 360 .
  • de Judicibus , MA and McCabe , MP . 2007 . The impact of the financial costs of multiple sclerosis on quality of life . International Journal of Behavioral Medicine , 14 ( 1 ) : 3 – 11 .
  • Department of Health (2005). National service framework for long-term conditions. Retrieved April 16, 2009, from http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4105361
  • Department of Health (2008). Carers at the heart of 21st century families and communities: A caring system on your side, a life of your own. Retrieved April 16, 2009, from http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_085345
  • Edmonds , P , Vivat , B , Burman , R , Silber , E and Higginson , IJ . 2007 . Loss and change: Experiences of people severely affected by multiple sclerosis . Palliative Medicine , 21 : 101 – 107 .
  • Ehrensperger , MM , Grether , A , Romer , G , Berres , M , Monsch , AU Kappos , L . 2008 . Neuropsychological dysfunction, depression, physical disability, and coping processes in families with a parent affected by multiple sclerosis . Multiple Sclerosis , 14 ( 8 ) : 1106 – 1112 .
  • Erikkson , M and Svedlund , M . 2006 . ‘The intruder’: Spouses’ narratives about life with a chronically ill partner . Journal of Clinical Nursing , 15 ( 3 ) : 324 – 333 .
  • Esmail , S , Munro , B and Gibson , N . 2007 . Couple's experience with multiple sclerosis in the context of their sexual relationship . Sexuality and Disability , 25 ( 4 ) : 163 – 177 .
  • Fong , T , Finlayson , M and Peacock , N . 2006 . The social experience of aging with a chronic illness: Perspectives of older adults with multiple sclerosis . Disability and Rehabilitation , 28 ( 11 ) : 695 – 705 .
  • Glaser , BG and Strauss , AL . 1967 . The discovery of grounded theory , New York : Aldine .
  • Green , G and Todd , J . 2008 . ‘Restricting choices and limiting independence’: Social and economic impact of multiple sclerosis upon households by level of disability . Chronic Illness , 4 : 160 – 172 .
  • Grytten , N and Maseide , P . 2006 . ‘When I am together with them I feel more ill.’ The stigma of multiple sclerosis experienced in social relationships . Chronic Illness , 2 : 195 – 208 .
  • Heward , K , Molineux , M and Gough , B . 2006 . A grounded theory analysis of the occupational impact of caring for partner who has multiple sclerosis . Journal of Occupational Science , 13 ( 3 ) : 188 – 197 .
  • Higginson , IJ and Hart , S . 2006 . Symptom prevalence and severity in people severely affected by multiple sclerosis . Journal of Palliative Care , 22 ( 3 ) : 158 – 165 .
  • Hunt , D and Smith , JA . 2004 . The personal experience of carers of stroke survivors: An interpretative phenomenological analysis . Disability and Rehabilitation , 26 ( 16 ) : 1000 – 1011 .
  • Jones , E and Asen , E . 2000 . Systemic couple therapy and depression , London & New York : Karnac Books .
  • Kapusta , B . 2003 . The emotional facts of life with cancer , Canadian Association of Psychosocial Oncology (adapted from a tool developed at the Northwestern Ontario Regional Cancer Centre)
  • Keeling , ML , Dolbin-MacNab , ML , Hudgins , C and Ford. , J . 2008 . Care-giving in family systems: Exploring the potential for systemic therapies . Journal of Systemic Therapies , 27 : 45 – 63 .
  • Kurtzke , JF . 1983 . Rating neurologic impairment in multiple sclerosis: An expanded disability status scale (EDSS) . Neurology , 33 : 1444 – 1452 .
  • McCabe , MP , McDonald , E , Deeks , AA , Vowels , LM and Cobain , MJ . 1996 . The impact of multiple sclerosis on sexuality and relationships . The Journal of Sex Research , 33 ( 3 ) : 241 – 248 .
  • McIlfatrick , S . 2006 . Assessing palliative care needs: Views of patients, informal carers and healthcare professionals . Journal of Advanced Nursing , 57 : 77 – 86 .
  • Nolan , M and Dellasega , C . 2000 . ‘I really feel I’ve let him down’: Supporting family carers during long-term care placement for elders . Journal of Advanced Nursing , 31 ( 4 ) : 759 – 767 .
  • Ong , LML , de Haes , JCJM , Hoos , AM and Lammes , FB . 1995 . Doctor–patient communication: A review of the literature . Social Science and Medicine , 40 ( 7 ) : 903 – 918 .
  • Pakenham , KI . 2007 . Making sense of multiple sclerosis . Rehabilitation Psychology , 52 ( 4 ) : 380 – 389 .
  • Pakenham , KI . 2008a . Making sense of caregiving for persons with multiple sclerosis (MS): The dimensional structure of sense making and relations with positive and negative adjustment . International Journal of Behavioral Medicine , 15 ( 3 ) : 241 – 252 .
  • Pakenham , KI . 2008b . The nature of sense making in caregiving for persons with multiple sclerosis . Disability and Rehabilitation , 30 ( 17 ) : 1263 – 1273 .
  • Prunty , M , Sharpe , L , Butow , P and Fulcher , G . 2008 . The motherhood choice: Themes arising in the decision-making process for women with multiple sclerosis . Multiple Sclerosis , 14 : 701 – 704 .
  • Rolland , JS . 1990 . Anticipatory loss: A family-systems developmental framework . Family Process , 29 : 229 – 244 .
  • Rolland , JS . 1994 . Families, illness, and disability: An integrative treatment model , New York : Basic Books .
  • Rolland , JS . 1999 . Parental illness and disability: A family systems framework . Journal of Family Therapy , 21 : 242 – 266 .
  • Rolland , JS and Williams , JK . 2005 . Toward a biopsychosocial model for 21st century genetics . Family Process , 44 ( 1 ) : 3 – 24 .
  • Schwartz , L and Kraft , GH . 1999 . The role of spouse responses to disability and family environment in multiple sclerosis . American Journal of Physical Medicine , 78 ( 6 ) : 525 – 532 .
  • Seddon , D , Jones , K and Boyle , M . 2002 . Carer experiences after a relative goes into nursing or residential care . Quality in Ageing – Policy, Practice and Research , 3 ( 3 ) : 16 – 26 .
  • Turner-Stokes , L , Sykes , N , Silber , E , Khatri , A , Sutton , L and Young , E . 2007 . From diagnosis to death: Exploring the interface between neurology, rehabilitation and palliative care in managing people with long-term neurological conditions . Clinical Medicine , 7 ( 2 ) : 129 – 136 .
  • Vetere , A and Dallos , R . 2003 . Working systemically with families: Formulation, intervention and evaluation , London : Karnac .
  • Weinman , J , Heijmans , M and Figueiras , MJ . 2003 . “ Carer perceptions of chronic illness ” . In The self-regulation of health and illness behaviour , Edited by: Cameron , LD and Leventhal , H . 207 – 219 . London : Routledge .
  • Wollin , JA , Yates , PM and Kristjanson , LJ . 2006 . Supportive and palliative care needs identified by multiple sclerosis patients and their families . International Journal of Palliative Nursing , 12 ( 1 ) : 20 – 26 .
  • Yalav , R , Vosburgh , J and Miller , A . 2007 . Separation-individuation processes of adolescent children of parents with multiple sclerosis . Multiple Sclerosis , 13 : 87 – 94 .

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.