Motor neurone disease (MND) is an uncommon neurodegenerative disease that is terminal and has an insidious onset. With no known cause or cure, the disease triggers progressive death of motor neurones that causes increasing difficulties with mobility, communication, breathing and nutrition. Most research focuses on the disease process, but little is known of the illness experience from the perspective of those diagnosed with the disease. The aim of this study was to explore what it is like to live with MND and how people with the disease negotiate with others to exercise choice over the way they live. A grounded theory methodology was used to explore the life world of people diagnosed and living with MND. Data were collected via in-depth interviews, their stories and photographs, poems and books participants identified as important and fieldnotes. The textual data were analysed using constant comparative analysis. The majority of participants experienced difficulty with verbal communication. Some invited a third person to interpret their speech and others used assistive technologies such as Lightwriters and computers. Analysis revealed three constructs that, together, told the story of the MND illness experience. First, was the “diagnosis story” that described the devastating process of repeated tests had on the participants, shattering their trust in the competence of the health care system. The second construct revealed the process of living with MND as cyclical and repetitive requiring constant decision-making to adapt to the ongoing changes connected with the disease. The core theme and basic social process of “maintaining personal integrity” evolved as the third construct. This process underpinned and explained participants’ decision-making. Finally a substantive theory was conceptualised as the illness experience: “maintaining personal integrity in the face of ongoing change and adaptation”. This theory illustrates that the basic social process of maintaining personal integrity is central to decision and choice making while living with MND. The findings have implications for people with MND, their carers, health professionals and service providers. Recommendations include improved counselling services for people at the time of diagnosis; the introduction of nurse specialists to support health professionals, people diagnosed with the disease and their families; open, accessible, realistic health and funding policies.

Äldre personer utgör en allt större del av befolkningen vilket gör att forskning kring hälsosamt åldrande blir mer aktuellt. Flera studier tyder på att ånger kring det förflutna har negativa konsekvenser för hälsan och att upplevelsen av att vara tillfreds har en positiv inverkan på välmående. Däremot saknas kunskap om hur äldre blir tillfreds med sina livsval. Studien syftade till att bidra med en mer nyanserad bild av hur personer över 65 år förhåller sig till livsval och konsekvenser av dessa, samt hur upplevelsen av att vara tillfreds med livet kan uppstå. Semistrukturerade intervjuer genomfördes med 11 deltagare. Det insamlade materialet analyserades utifrån en induktiv tematisk analys vilket resulterade i fyra huvudteman och 12 subteman. Huvudtemana Positivitet, Acceptans och Självständighet innebär tre olika förhållningssätt till livsval. Social kontext belyser social påverkan på livsval samt hur gemenskap och att vara betydelsefull bidrar till välmående och mening i livet. Studiens bredare definition av livsval och det positiva fokuset bidrar till en mer nyanserad bild av äldres syn på livsval inom flera olika områden. Resultatet visar att upplevelsen av att vara nöjd inte nödvändigtvis kan likställas med att vara tillfreds, och att hur människan förhåller sig till valet och dess konsekvenser blir viktigare än det faktiskt utfallet i det aktuella valet. Äldre som söker behandling för hantering av negativa känslor kopplade till åldrande och livsåterblickande kan behöva olika interventioner beroende på hur de förhåller sig till livsval. / Older people make up an increasing proportion of the population which makes research on successful aging more relevant. Several studies show negative health consequences when regretting the past and that the experience of coming to terms have positive effects on well-being. Although, little is known about how older people come to terms with life choices. This study aimed to contribute with a nuanced picture of how people over the age of 65 relate to life choices and their consequences, and how elderly people come to terms with life. Semi-structured interviews were conducted with 11 participants. The material was analyzed based on inductive thematic analysis, resulting in four main themes and 12 subthemes. The main themes Positivity, Acceptance and Independence involve three different approaches to life choices. Social context highlights the social impact on life choices and how community and being important to others contributes to well-being and purpose in life. The broader definition of life choices and the positive focus of this study contributes to a more nuanced picture of older peoples view on life choices in multiple areas. The result shows that the experience of coming to terms with life not necessarily can be equated with being satisfied, and that how people relate to life choices and its consequences becomes more important than the actual outcome of the choice itself. Elderly people who seeks treatment for dealing with negative emotions related to aging and life reminiscence may need different interventions depending on how they relate to life choices.

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